Myeloma Dawg

January 4, 2012

2012-01-04T06:03:00.000-08:00

Visited the O/H yesterday. IGG had dropped to 1472, which is in the normal range; Kappa Light Chains rose slightly to 3.02 (1.94 is upper normal); but they have been higher in the past; M-spike dropped from 1.3 to 1.2. Overall I feel ok and there is no pain. WBC and RBC were low and I need to watch this. I did get a flu shot this past October; hopefully flu will not be an issue this year.

January 1, 2012

2012-01-01T01:00:00.001-08:00

Happy New Year to everyone.

November 20, 2011

2011-11-20T18:31:00.000-08:00

Today is another 10 mg of dex day--probably will not sleep tonight.

Had a visit with O/H last Monday (11/14/2011). lab results of 11/7/2011 were in and can be compared to 10/7/2011 lab results. Kappa Light Chains dropped to 2.45 mg/dl from 2.82mg/dl(uppermost normal is 1.94mg/dl); obviously any drop is good news. M-spike dropped 10 1.3g/dl, which is a drop from the previous months value of 1.4 g/dl. Igg dropped to 1572 mg/dl from 1622 mg/dl. Uppermost normal Igg is 1554 mg/dl. In other words all of the three cancer makers dropped.

I continue to be off chemo (except for the twice weekly dex (10 mg twice a week)). Will go back to the O/H in early January.

October 27, 2011

2011-10-27T08:15:00.000-07:00

Today is dex day; 10 mg before 9 am. I am now on two 10 mg doses per week. Well not exactly, I take 10 mg, then wait 4 days before I take another 10 mg. Thus it is two doses every 8 days. I find that I need 3 nights of good sleep before taking another dose.

October 19, 2011

2011-10-19T13:37:00.000-07:00

I came across some old blood work that I had back in December 2004, before I was diagnosed with MM. Here are the results compared with my October 7, 2011 blood work; the first number is the December 2004 results; all results are in the same units so they can cross compared.

WBC 4.2 4.1
RBC 4.2L 4.8
HGB 15.2 16.0
HCT 42 46
Plt 231 227
glucose 96 (fast) 102 (non fast)
Creatinine 1.0 1.0
calcium 8.7 9.7
total protein 7.3 7.5

Not really much difference; while it may be possible that I had MM in December of 2004; there would have been no symptoms whatsoever.

October 15, 2013

2011-10-15T19:30:00.000-07:00

Last week I noted that my Kappa Light Chains, collected on 9/23/2011, had been significantly elevated at 3.93 mg/dl (from 2.56 mg/dl on 8/12/2011). This was disturbing; however, the higher values came from a different lab. On October 7, the labs were repeated at the lab that I typically use. This time, the Kappa Light Chains were 2.82 mg/dl. This is not far different than the values that I had back on 8/12/2011 (2.56 mg/dl),3.26 mg/dl on 5/18/2011, and 2.68 mg/dl on 4/20/2011.

My Igg values increased to 1622 mg/dl; however, they were 1606 mg/dl on 4/20/2011.

My M-spike is now 1.4 mg/dl.

Everything appears to inching upward; but not as rapidly as the 9/23/2011 lab results suggested.

I am on dex twice a week (10 mg on Sat and Wed).

CBC values are ok wbc, total protein, creatinine,hemoglobin, hematocrit, platelet counts, neutrophils, and RBC are all in normal range.

Will see the O/H in early November; for the time being, no chemo (other than the dex) is scheduled.

October 7, 2011

2011-10-07T09:20:00.000-07:00

Well it looks as if my 15 month reprieve from chemo may be coming to an end.

My Kappa Light Chains, which my O/H thinks are the best MM marker, increased from 2.56 mg/dl to 3.93 mg/dl. Lamda Light Chains were .56 mg/dl which also is an increase but the lower normal is .57 mg/dl.

The rise in the Kappa values is disturbing but at my O/H visit today, the following course of action was decided:
1. Immediately increase dexamethasome to 20 mg (10 mg, twice a week)
2. Do a new set of blood work to confirm if Kappa Light Chains actually are higher or whether the previous analysis is just an aberration.
3. If Kappa Light Chains actually are higher, then go back on chemo (probably Velcade on a once a week basis--higher dosages have caused me significant neuropathy).
4. If Velcade doesn't do much, consider using something different like Revlimid (Some chemo treatments become non-effective with time). On the other hand, if Velcade is reasonably effective, then continue and monitor.

I feel ok but hopefully I can nip this increase in the bud. I should have the lab results by the latter part of next week

September 17, 2011

2011-09-17T08:11:00.000-07:00

It has been 2 months since I last posted; labs have been more or less the same and I feel good. Right now, I have been in Poland for the past 2 1/2 weeks. Will get back to USA on the 21st. Have O/H appointment in early October. Nothing much else to say for the time being.

July 16, 2011 (2)

2011-07-16T09:42:00.000-07:00

I just received my statement for charges from my insurance carrier for my Zometa Infusion on 6/27/2011. I have a Medicare A, B, D plus supplemental provided by my former employer. For the Zometa Infusion, the clinic billed Medicare $3609.00, however of this, Medicare excluded $2,583.23 and only paid the clinic $976.27. My co-pay was $50.00. This included the infusion plus all of the blood work. Since this was my 25th infusion, billings would have been over $90,000 with actual payments being only about $24,400 and my out of pocket being $1250 over a 2 1/4 year time period.

While I don't like to pay more, a $50.00 per infusion co-pay is unrealistically low. Doubling or tripling the co-pay is no big deal.

American seniors are treated like royalty; and the working folks with children must bear the pain of taxation and much higher health insurance. Virtually every senior I know is living like a king taking cruises, weeks at the beach, dinner at nice places, new cars, and so forth.

July 16, 2011

2011-07-15T20:14:00.000-07:00

Lets start with some photographs of our recent vacation to the Finger Lakes of New York. We visited quite a few wineries, probably drank to much.

Visited the H/O this past Tuesday. Kappa Light Chains are back in the normal range at 1.93 mg/dl; the upper normal is 1.94 so I am just in. My O/H believes that Kappa Light Chains are a better myeloma marker than the M-Spike. Igg was 1571 mg/dl which is slightly above the upper normal of 1554. With the exception of my WBC, which was a bit below normal, my other blood counts were normal. We have decided to stay off chemo for another 6 weeks; at that time, we will redo my blood work and reassess my cancer burden. On June 27, I had my 25th Zometa infusion, this was my 25th, and it had been 3 months since my previous Zometa infusion. At the aforementioned H/O appointment, we decided that we would discontinue Zometa for the time being. The H/O believes that since I am more or less in a stable condition; the risks of bone necrosis out weighed the benefits of increasing bone density.

However, I have had a bout of MRSA in the left elbow. This is my third event. After installing new sprinkler heads in the yard, I woke up with a swollen and painful left elbow. I immediately went to a Walk In Clinic, a culture was drawn and I was put on an antibiotic. However, it turned out this antibiotic was ineffective for MRSA and I had to switch to Doxcycline which is supposed to be effective for MRSA. My swelling has diminished and the pain is gone; however, there are still thick areas under the skin. I have consulted with an orthopedic physician that specializes in MRSA and his recommendation is to watch and wait; If it gets worse, he will see me quickly and open up my elbow and treat it with a new drug that kills MRSA on contact.

Next week I go back to north Georgia for some consulting and then on Thursday we take off to Kansas City for my cousin's 50th wedding anniversary.

June 11, 2011

2011-06-11T10:00:00.001-07:00

May 20, 2011

2011-05-20T13:35:00.000-07:00

Nothing new to report. Spent last week in the north Georgia mountains, mostly drinking wine.

Went and had my blood work done in anticipation of my June O/H appointment. From the time I walked out of the parking garage to time I walked back in the garage was only 1 hour. Didn't have an appointment but I am on good terms with the folks at the clinic; thus I just have tell to run the labs and they draw the blood. Minimal paperwork.

April 21, 2011

2011-04-21T20:17:00.000-07:00

Today is dex day (10 mg/wk) so I probably will not fall asleep until 5-6 am; the lack of sleep is more of a nuisance that a real problem.

I went to see the H/O yesterday and got my latest lab results. BP, CDC, and creatine were all in normal range, as of yesterday. I had IGG, M-spike, and Kappa Light Chains done a few weeks ago in anticipation of this visit. Igg went up to 1571mg/dl; but this is only slightly above normal and more or less the same as it was back in November and December of 2010. M-spike went up 1.3 from 1.2; but this is the same as it was back in December. HOWEVER, Kappa Light Chains dropped 1.73 mg/dl; this is the lowest ever and marks the first time since diagnosis that the value is the normal range.

I will continue to stay off Chemo for the time being; but sooner or later, I know I will have to restart. Zometa treatments will now be quarterly instead of monthly; this is because of the marked improvement in bone density.

Presently I live a normal but somewhat subdued life.

April 7, 2011

2011-04-07T05:59:00.000-07:00

For the past few months, I have had aches in my right knee; went to the orthopedic doc and got a cortizone shot and have now started physical therapy; this is not related to my MM. Other than the knee, I feel good.

March 26, 2011

2011-03-26T12:00:00.000-07:00

Yesterday, I had my 24th Zometa infusion; CBC blood work was in normal range except for glucose. Creatin was 0.8, which is good. Nothing much else to say at this time.

February 23, 2011

2011-02-23T13:47:00.000-08:00

Today is the second aniversary of my first going to the doctor for the symptoms that eventually led to my diagnosis with MM. So I guesss this is my second aniversary; although the actual diagnois cam on March 30, 2009.

I got the results of my bone density test that was done yesterday; there was "marked improvement" over the 2008 results, which were pre-diagnosis. Since there has been improvement, I anticipate that the Zometa infusions will drop to a lower frequency after the March infusion (which will be the 24th).

Zometa, after the first 2 or 3, was no big deal; but neverthless it was a once a month activity.

February 19, 2011

2011-02-18T21:50:00.000-08:00

Visited the H/O last Monday and got results of last lab work (labs were done 2/7/2011). BP was normal but on high end (133/87). Weight was up a tad (about 1.5 pounds). WBC = 4.3 (up from last month). Hemoglobin = 15.5. Hematocrit = 45.7. Platelets = 252.0. RBC = 4.59. Creatine = 0.87. Calcium = 8.8. All of the above are in the normal range.

M-spike was 1.2 g/dl, which is a drop from last month. Igg and Kappa LC were not available. When considering that the M-spike went down even though I have been off chemo for 7 months now, I see that as a good sign. Still taking 10 mg of dex once a week; this, however, is manageable. M-spike will not stay in this range forever; so sooner or later I will go back on chemo.

I take my 23rd Zometa bone infusion on the 25th of this month. On the 22nd, I will have a bone density scan. Depending on the results of the scan, a decision will be made about continuing.

My next appointment with my H/O is the first week in April. At that time, I will have been of chemo for 9 months.

January 28, 2011

2011-01-28T10:46:00.000-08:00

Today is dex day; so I probably won't sleep tonight. I am used to this by now.

On Tuesday, January 25, I had my 22nd Zometa infusion. Spent more time in waiting room than for the infusion; 2.5 hrs from checkin to checkout. Two more infusions to go and I will have completed my initial 24-month therapy. After that it will probably be once a quarter; this just gives me greater flexibility.

BP and blood work all fell in the normal range. WBC, however, were at the low end of normal.

Will have cancer numbers checked on 2/7/11 so that they will be available for my H/O for my 2/14 appointment. It takes about 4 days to turn around the cancer values such as IGG, M-spike, and Kappa light chains.

January 15, 2011

2011-01-15T19:43:00.000-08:00

On Monday (1/3/20110), I had my appointment with my H/O and I got the results of my 12/27/2010 lab work. Igg was 1564 mg/dl, up slightly from 1558 on 11/22/2010--upper normal is 1554, thus 1564 is only slightly above normal; total protein was 7.1 g/dl, normal and unchanged; M-spike was 1.3 g/dl up from 1.2 in November (it also was 1.2 last June, thus no large change); Kappa Light Chains were 2.42 mg/dl (normal is less than 1.94)--up from November but less than June of 2010. Because there were no large changes and the values were not that different than 6 months earlier, I decided to stay off chemo for another 6 weeks. I have another appointment on Valentine's Day.

On the 25th, I have my monthly Zometa; only 2 more after this on the 2-year schedule. After that, the H/O suggests every other month or quarterly. Zometa has not been a big deal after the second or third time, when I did experience some aches and minor pains.

Later that same day, I had my teeth cleaned and it was decided that I needed a root canal, which was scheduled for the next day. This was done.

On Thursday (1/6/2011), we took off for a week in Puerto Rico, where we did some snorkeling and lots of sunbathing.

Tonight is dex day thus I probably won't sleep tonight. Tomorrow, I take off for Atlanta for some business meetings.

Nothing much else to say; will keep all of you posted; but there is not much to say right now.

December 31, 2005

2010-12-31T11:22:00.001-08:00

Happy New Year to Everyone:

Yesterday was dex day; so I was up all night; but watched the late Nebraska-Washington bowl game.

When you take steroids such as dex, you have to worry about glaucoma; had my checkup today; everything ok, will go back in 6 months. I have a slight infection in my gum; no pain but I suspect that a root canal may be in order. Will see dentist on Monday.
If I do need dental work, I will need to postpone January's Zometa infusion.

Also will see O/H and get the results of Mondays lab work (it takes about 4 working days to get M-spike, Igg, Kappa LC, etc.). Other than dex, I have been of chemo for 6 months. If the cancer numbers have gone up, then I guess I am back on Velcade again. Also I will start pursuing a stem cell transplant.

December 23, 2010

2010-12-23T14:13:00.000-08:00

We are back from our cruise; had a good time and was able to do some snorkeling at Roatan. Probably ate too much as I weigh 5 pounds more now than when I left.

Had my Zometa treatement last Tuesday; WBCs were a little low; but everything else was ok. Today is dex day so I doubt I will sleep tonight.

I go and see the H/O on Monday after New Years. At that time, I will know whether I can stay off chemo for another month.

December 4, 2010

2010-12-03T22:17:00.000-08:00

Today is dex day again; so I am still up and its 1:30 in the morning. Dex was common when I was UGA back in the 60s. Students would take a pill and stay up all night studying. Generally the day I take dex (usually at about 8:00 am), I feel quite good and productive. The difficulty with dex is that my brain keeps working when I lay down and try to go to sleep.

This past Tuesday, I went to see my O/H. My numbers were as follows: WBC = 3.6; but my neutrophils were good so I am not overly susceptible to infection. Igg is 1558, but this is only 4 over normal. M-spike was 1.2, which is an increase over last months 1.1; however for the two proceeding months it was 1.2. Glucose, calcium, and total protein were normal. Kappa LC were 2.34 and went up slightly from last month but are down from the three previous months. Overall the Myeloma markers went up some but not that much from earlier in the late summer and early fall. I have now been off Velcade for 5 months now. Because there was no marked deterioration in my cancer numbers, I in consultation with my O/H decided to wait another month (actually 6 weeks) before making the decision to go back on chemo. During the spring and early summer, I took Velcade once per week and the cancer numbers stabilized with Igg being in the high normal range, M-spike at 1.1 and the Kappa LC being about 2.6-2.8. These numbers are not that far different than my most recent numbers. I guess I'm inclined to believe that if I go back on Velcade I will not achieve much improvement; nevertheless with these values I can live a more or less normal life. The neuropathy has lessened over the past 5 months; but it is still there.

My wife and I decided to take a cruise starting December 11, 2010, so I will be out of pocket for a while and not blogging.

November 20, 2010

2010-11-20T00:31:00.000-08:00

Thursday was Zometa day; labs were slow so I ended up spending almost 3 hours at the infusion center. Only bad lab was WBC, which was 3.7 instead of 4.0. No reaction to the Zometa. Friday was dex day with 10 mg. It's 3:30 am Sat. morning and I am still awake. Will need Ambien tonight but after that I will be ok until next dex day (next Friday).

November 5, 2010

2010-11-05T11:17:00.000-07:00

Today is dex day; will probably be up all night; but I do have a DVD so I can watch a movie tonight; also have some project work that will keep me busy for a few hours.

I have read many of the other blogs and it seems that most initial symptoms are pain (mainly back pain), the unexplained breaking of bones, or being very tired. I had none of these.

My initial symptom was a gait and balance issue; I felt as if I was forever walking on a giant mattress. That's all. My primary care physician just tested for everything and in 5 weeks, MM was confirmed. To date, I have never had any pain; but the being tired symptom did come on after the initial visit to the primary care physician.

October 29, 2010

2010-10-29T19:50:00.000-07:00

Went to see the H/O today; lab results were better than last month; so we will hold chemo off for another month. The plan continues to be that if lab results worsen, then I will schedule a stem cell transplant.

Will continue on Zometa through March of 2011 (24 total infusions); after that infusions will probably drop to 1 every 2-3 months.

Here are the labs: WBC 4.70 up from 4.2 from October 19; Hemoglobin 15.2 up from 14.9; platelets 264 down from 273; and RBC 4.75 up from 467. All are in the normal range.

IGG was 1459 down from 1506 on September 17(still in normal range); IGA and IGM were both up slightly (still below normal but improving since September 17); M-spike was 1.1 down from 1.2; Kappa LC was 2.27 down from 2.68; Lamba LC was 0.17 up from 0.10 (good) and the Kappa/Lamba ratio was down from 26.80.

Had my flu shot on the 16th and my teeth cleaned on 12th; trying to stay healthy.

Today is dex day so I probably won't sleep tonight. I have learned to deal with this so its not that big a problem.

October 19, 2010

2010-10-19T13:35:00.000-07:00

Had my monthly Zometa infusion today; the infusion center was slow; spent 2 1/2 hrs there from start to finish. Creatine was .9, WBC was 4.2, HG was 14.9, platelets were 273, abd RBCs were 4.67. All good.

October 8, 2010

2010-10-08T06:05:00.000-07:00

Today is dex day; 10 mg in the morning. Dex makes me feel good during the day; but I probably won't sleep tonight. However, tomorrow I will take an Ambien and sleep quite well. This is my pattern now, stay up all night on dex and then get a good night's sleep the next. The dosage that I take is low and so far manageable.

I got my second check from AFLAC on Monday. It covered a years worth of chemo and 12radiation treatments. The AFLAC payments now exceed all my premium payments going back to 1986 and all of my non-insurance covered medical payments. In other words, I have made a profit off my myeloma.

We have made a reservation for a two night stay in St. Augustine next week; the weather in Florida is nice now (low 80s in the day) and walks on the beach will be quite enjoyable.

September 22, 2010

2010-09-22T14:31:00.000-07:00

Had my monthly Zometa infusion yesterday; no big deal. When I first stated taking Zometa, I had numerous aches and pains; but these no longer occur.

I also got last week's (9/17/2010) lab results: Igg up to 1506 mg/dl from 1503; M-spike stayed the same at 1.2 g/dl; and Kappa LC increased to 2.68 mg/dl from 2.55. Overall, very litle change. At this point, I'm inclined to stay off chemo for another month.

I feel reasonably good.

September 16, 2010

2010-09-16T06:51:00.000-07:00

Last Tuesday I drove over to Crescent Beach and walked in the surf; the weather was nice and the beach was almost empty. Stopped off on the way home for beer and shrimp. Very thankful that I can do day trips by myself.

Had the clinic send me a copy of all my treatment charges (doesn't include physician's charges) from Sept 1, 2009 thru August 31, 2010. They total almost $225,000; Medicare, however, doesn't pay this rate. My total cost was only $500. I
also have a cancer policy; will submit it this weekend. Probably will turn out that I am making a profit on my myeloma.

Myeloma is a terrible disease; but without insurance it would be an absolute nightmare.

September 12, 2010

2010-09-12T07:52:00.000-07:00

Chemo or no chemo:

I have now been off chemo for about 2 1/2 months and I feet quite good; however my numbers (Igg, M-spike, and Kappa LC) are probably getting worse; I will know my new numbers in about 10 days after my 9/17/10 O/H visit. This is always a dilemma; feel good with worsening numbers or feel bad with improving numbers.

Of course I will go back on chemo if my numbers worsen significantly.

With Myeloma, the cure is often worse than the disease.

Oh well

September 10, 2010

2010-09-10T14:03:00.000-07:00

I haven't posted for a while; but I have been busy. On August 7, 2010, my family had a surprise birthday party for me. Four daughters and a bunch of grand kids came over and we had a good time. On the 28th I went to a high school reunion in Georgia, which I combined with a business trip.

I completed by my 12 days of radiation on August 6 of the T-7-9 vertebra; this was no big deal. Since I wasn't in any pain, I didn't feel any difference. Most folks with Myeloma feel better after radiation. On August 24, I had my 17th Zometa treatment; these treatments will continue until I have completed a total of 24.

I am still concerned about blood sugar, which may be elevated due to my dex that I take with my Velcade and weekly 10 mg of pills. Right now I am trying to reduce intake of carbs and sugars; will have this rechecked in early 2011.

My last WBC and platelets were 5.3 and 230 thou/cu mm respectively. Hemoglobin and RBC were in the middle of the normal range. Memocrit and Neutophils were in the upper normal range.

Creatinine remains low at 0.9 mg/dl.

Igg increased from 1381 mg/dl on 7/27 to 1503 on 8/10. Still normal; but not moving in the right direction. M-spike increased from 1.1 g/dl to 1.2 over the same time period. Again, not the direction that I wanted. Kappa light chains also increased from 2.36 mg/dl to 2.55. I have an appointment with the H/O on the 17th; and I suspect that I will go back on chemotherapy. Since the numbers did not change drastically, I elected to remain off chemotherapy for another month (i.e., late September).

I have now been off Velcade since June 29th and my neuropathy is definitely diminishing. Actually I feel quite good.

I still don't sleep on the day that I take the dex pills; but during the day, I do nap and generally feel good and productive.

August 26, 2010

2010-08-26T08:48:00.000-07:00

I haven't posted for a while; but I am fine but busy. Will try and get an update out in the next week.

August 1, 2010

2010-08-01T14:12:00.000-07:00

I have now completed 7 of 12 days of radiation therapy; 5 more to go. The radiation is low dose and only last about 30 seconds; adjusting the machine is the time consuming part; but the whole deal only takes about 10-12 minutes.

This past Tuesday (7/24), I had my monthly Zometa treatment. MY CBC's were all normal; I also had the more extensive labs; M-spike was stable at 1.1. Igg and Kappa FLC were down a bit

Will meet with the H/O on 8/10; and we will decide if I continue to stay off Chemo; I have been off a month now and feel noticably better. Still take weekly desamethasome pill (10 mg); and will probalby continue to do so for the forseeable future.

July 15, 2010

2010-07-22T10:13:00.000-07:00

I had my appointment on July 15, 2010 with doctor who will direct my radiation treatment; everyhting went well and I was impressed by both he and the facility. Radiation will continue for 12 days. The first radiation treatment was today; from start to finish and including aligning the equipment took only 1/2 hr; really no big deal. 11 treatments to go.

I have picked up some new consulting work; drove up to Atlanta on Monday and back on Tuesday (800 miles). Work will continue for another few days.

I feel good right now.

Nothing much else to say.

July 10, 2010

2010-07-10T06:28:00.000-07:00

The appointment for radiation came through quickly. Will be Thursday morining (7/15/2010). H/O and hospital, at least, are quick.

July 9, 2010

2010-07-09T07:31:00.000-07:00

Last Wednesday (7/7/2010), I went over to hospital and picked up a CD of my recent CAT-Scan and MRI and took them to another doctor to get a second opinion; he did this and confirmed that the lesions in my vertebra are myeloma. He also called this in my O/H who will be setting up a radiation treatment appointment; hopefully in the next two weeks. I still have no pain and generally feel reasonably good.

The radiologist who rendered the second opinion also suggested that possibly after the radiation treatment is completed, I should consider vertebrolasty (sp?) treatment. This is basically a grout job of the lesions so that they will be less susceptible to fracture. While there is no evidence of fracture so far, I do have several lesions and thus I am susceptible to fractures. The grout job won't cure anything or mitigate existing pain (which I don't have), but will just make the vertebra less susceptible to fracture.

This reminds me of the winter of 1977 when I grouted up a leaking dam in Maine; temperatures were 10-20 degrees below zero; it took 2 months but the leak was plugged.

Today is dex day so I probably won't sleep much tonight.

July 6, 2010

2010-07-05T21:49:00.000-07:00

Good news gone bad:

In my last post, I blogged that my recent CAT Scan did not show myeloma; however, this was only the oral report; the actual written report said that was a lesion on my T-9 vertebra suspicious of hemangioma (a build-up of blood vessels and no big deal) or less likely myeloma. A MRI was recommended.

Well the MRI ruled out hemangioma and the lesion probably was a myeloma lesion. The next step probably will be radiation. Hopefully, a course of action will be developed some time this week.

I haven't had any back pain at all; in fact my myeloma has not been characterized by not any pain whatsoever.

I had my 15th Zometa treatment last Tuesday (6/29/2010); CBC's were all in normal range and creatinine was 0.9 (good).

We drove to north Georgia on last Thursday to work on our mountain house; I felt quite good; had lots of energy.

June 21, 2010

2010-06-21T11:14:00.000-07:00

Good News: the CT-scan that was performed last Friday showed no myeloma; while I will still have a Velcade infusion tomorrow; I hope that chemo will curtailed or reduced shortly. Monitoring, obviously, will continue.

June 15, 2010

2010-06-15T16:06:00.000-07:00

Went for Velcade infusion today; no problems. BP was 130/79, WBC = 7.2, Hemoglobin = 14.5, Hemocrit = 14.5, platelets = 44, RBC = 4.59, and creatinine = 0.9. Also got the results of last weeks (6/8/2010), more extensive lab results: Igg = 1432 (normal and down form 6/1/2010 results, M-spike = 1.1, unchanged, and Kappa LC = 3.12, an increase from the previous weeks result of 2.58.

Last Tuesday (6/8/2010), I talked to the stem cell transplant specialist. He is inclined to curtail or reduce chemo and just monitor my blood chemistry over time. If cancer markers go up, then a stem cell transplant may be in order. He and my O/H will discuss this and develop a recommendation. For the time being, weekly chemo will continue. He also has scheduled me for a complete CAT scan just to see in no additional bone lesions have developed. The CAT scan will take place this Friday.

A review of medicare guidelines is that stem cell transplants require the patient to be at Durie-Salmon Stage II or Stage III. It is not clear that my MM is this far advanced (yeah!!!). The CAT scan may provide additional information on this.

This past weekend. my wife went to St. Augustine and ate oysters and seafood and drink draft beer. Very nice.

June 6, 2010

2010-06-06T11:33:00.000-07:00

June 5, 2010

2010-06-05T06:50:00.000-07:00

Yesterday was dex day. The dex pills (10 mg) usually make me feel good; however not so much yesterday. I did, however, fall asleep last night at 10:30 and woke up at 7:00 today; thus I had a good nights sleep. Maybe my body is handling the dex better as insomnia appears to be easing up.

I received an e-mail from a high sh cool classmate that one of our classmates is now in a nursing home for dementia and/or Alzheimer's. This fellow would be the same age as me; at least my brain is working ok and I have never had "chemo brain" nor any adverse mental reaction to dex other than insomnia and slight hyperactivity.

June 3, 2010

2010-06-03T11:46:00.000-07:00

My latest lab results (June 1, 2010) are in and compared with my previous lab results (March 29, 2010); as follows:

Igg was 1491, which is an increase from 1378
M-spike was 1.1 reamining constant
Kappa LC was 2.58, which is a decrease from 2.69
Ca was 9.7 which is normal
Glucose was 172; however, this, while high, was a non-fasting measurement.

The bottom line is that after 4 weeks off chemo, my lab values are not far different than they were on March 29, 2010.

I do have some good news to report on the stem cell transplant front; Shands, at least, will accept my insurance for a consultation to determine if I am a candidate for a transplant. The consultation is scheduled for June 8.

I slept good this past Tuesday after my Velcade infusion and did not need an Ambien. Tomorrow is my dexamethasome day; normally the dex makes me feel good.

June 1, 2010

2010-06-01T10:26:00.001-07:00

Went for Velcade/Zometa infusion today; again no big deal. BP was 113/77, creatinine was 1.2; CBC's were all in normal range.

However, a big shock came as the stem cell transplant folks at Shands called to say they did not accept my insurance; now I will have to find a hospital in FL that will accept it. This means that I probably have to go out-of-town for the transplant.

More red tape, damn.

May 29, 2010

2010-05-29T12:23:00.000-07:00

Well we are back from our Mediterranean cruise.

On May 11, 2010, I had my the pressure in my eyes checked. In few months ago, I had cataract surgery in both eyes; after the surgery, the pressures in my eyes had increased and there was concern that the dex that I was taking as part of my chemo was the cause. The May 11 results were good and pressures were normal. Will have a follow-up checkup in six months but it appears that my chemo regime is not leading to glaucoma.

On Wednesday, May 12, the day before leaving on the cruise, I became sick as a dog with vomiting and diarrhea. We made it Venice ok but while there, I became ill again. Overall, it took about a week to recover. I, however, attribute my illness to something I ate rather to any reaction from mm or my chemo. While on the cruise, I continued to take my weekly 10 mg of dexamethasome.

On June 1, I restart my treatments with Velcade after a 4-week lapse. Will also get my monthly B-12 shot and Zometa infusion. I also will visit my O/H that same day. M-spike, Igg, and Kappa Light chains also will be analyzed; these results generally are not available 3-4 business days later.

I continue to feel reasonably good. While I have been off Velcade, my peripheral neuropathy has decreased (good); thus I am more agile than I was a few weeks ago.

We had a good time in Europe; but it is good to be home in your own house. Still have a lot laundry to do; but my wife and I will get through it.

May 7, 2010

2010-05-07T09:39:00.001-07:00

Today was supposed to be dex day; however, I didn't sleep well last night so I will take an ambien tonight and the dex tomorrow. I now have a 3-week break until June 1 with no chemo. At that time, I will get back on my once a week chemo schedule. I now have an appointment with the stem cell transplant guy on June 8 for the initial consultation.

Last week we went up to the mountain house to do some wall-paper stripping and painting. Nevertheless, we were able to finish the project.

I will not be blogging until about June 1; when we get back from Europe, I will restart my blog.

May 4, 2010

2010-05-04T09:38:00.000-07:00

Since my last post on 4/15, I have had 3 additional Velcade infusions (39 total) and 1 additional Zometa infusion (13 total). CBCs and kidney function were all ok; my initial stem cell transplant consultation is scheduled for June 8, after my wife and I get back from vacation.

Will write more to this blog later in the week; but I need to do some household chores right now.

April 15, 2010

2010-04-15T20:51:00.000-07:00

Had velcade infusion #35 this past Tuesday; didn't sleep Tuesday night but had good nights sleep Wednesday. Felt good today (Thursday).

April 10, 2009

2010-04-10T09:05:00.000-07:00

Had my 34th Velcade Infusion on Tuesday (April 6); again no big deal; however, I didn't fall asleep until about 5:00 am on Wednesday. Went to bed on Wednesday evening about 8:00 and had good nights sleep with Ambien. Friday was dex day and again I had a hard time falling asleep; but I slept late today (Sat).

April 1, 2010

2010-04-01T12:39:00.000-07:00

Had my 33rd Velcade Infusion on Monday (March 29, 2010). CBC's were all good and in the normal range and generally better than on March 3, 2010 results (closer to mid-range); so was BP. M-spike had increased to 1.1 from 1.0; however, Kappa LC had dropped to lowest ever of 2.69 (this is a decrease from 3.3 on March 3. Igg dropped to 1378 from 1451 (this is good); my lowest Igg was 1363. The plan is that I will continue to do Velcade once a week until about mid-May, at which time I will drop off chemo for about 3-weeks while we go to Europe for 2 weeks.

After we get back from Europe, we will start discussions on stem cell transplant using my own cells.

Also March 30, was my one year diagnosis date.

March 19, 2010

2010-03-19T12:21:00.000-07:00

Had my 31st Velcade Infusion this past Tuesday (3/16/2010). CBCs an BP were all in normal range. Today (Friday) is dex day. Everything is going fine; nothing much else to say.

March 12, 2010

2010-03-12T20:15:00.000-08:00

Went to the family doctor about my elevated glucose levels on the 10th. He feels that the levels, which are not that high, have been raised by the dex. He wants me to go on a low carb-low sugar diet; this is no big deal--will have steak instead of pizza.

Today is dex day; stayed busy today; its after 11 pm but I'm not sleepy. Feel ok

March 9, 2010

2010-03-09T17:45:00.000-08:00

Went to eye doctor yesterday for my checkup on my cataract operation; healing is going great; I have 20/25 in left eye and 20/20 in right eye. Will continue using drops until first of April.

However, my pressures are up and I have pre-glaucoma; the eye doctor thinks my dex is causing this; I picked up some drops today, which I will take for week and then have my pressure checked again.

I had my 30th velcade infusion today; no big deal. CBC's were all good.

May 5, 2010

2010-03-05T19:29:00.000-08:00

The O/H called the me with March 3's lab results: M-spike was 1.0, no change since no Feb 1, 2010. Igg had incresed to 1451 (still normal but barely so) from 1363; Kappa Light Chains had increased to 3.33 from 3.02. This is not the direction that I was looking to achieve. This may be fluctuation; and values, hopefully may go down before my next appointment, which should be late March or early April.

Today was dex day; generally I feel better on dex days and today was no exception.

Neuropathy is more or less staying the same; not getting better and not getting worse.

The plan is to continue the weekly velcade infusions for another month and then see if any trends are developing.

March 4, 2009 (2nd post)

2010-03-04T16:57:00.000-08:00

I just counted that I have had 29 velcade infusions and 11 zometa infusions over the past 11 months. Also have taken 48 dex (10 mg) pills. March 30 will be 1 year from the official diagnosis; although by this time last year, I pretty well knew what was going on.

March 4, 2010

2010-03-04T10:29:00.000-08:00

Last week, I had my weekly velcade and zometa treatments. Everything went fine.

On Monday, I had my second cataract treatment this past Monday; I now see 20/20; quite a change from 20/400.

I had my weekly velcade infusion yesterday (March 3, 2010). Labs were all normal as well as BP. Also had my monthly O/H appointment. Will not get my Igg, M-spike, and Kappa LC until early next week--it ususally takes about 4-5 working days to get these results. Heartburn was a problem last night as well as a severe headache. Feel much better today.

Drove up to the mountain house in north Georgia this past weekend; we have decided to sell the house as 400 mile trips from Florida are quite a drag and we just don't go up there much anymore. Real Estate is a bummer in Georgia; but perhaps we will get a reasonable offer. The house is 3/4 paid; so I am not hurting.

February 19, 2009

2010-02-19T11:56:00.000-08:00

Ultimately last weeks Velcade infusion went ok; insomnia and constipation were manageable.

On Friday, I learned that my glucose level after fasting was 100 (impaired as normal is 65-99) and that my Hemoglobin A1C is 6.8% (normal is < 6.0%). My research, prior to my doctors visit is that the dex may raise blood sugar levels. I have already cut back on carbs and sugar while I am trying to schedule a doctor appointment.

On Monday, I had cataract surgery in my left eye. I now see 2/25 out of that eye; the right eye is still 20/200. The surgery took about 15 minutes and was no big deal; most of the time was spent waiting for my eye to dialate; total time at the eye center was about 1:45 hours.

I had this weeks Velcade infusion on Wednesday. It went fine, CBCs, BP, and creatine were all normal. I am trying to wean myself from Ambien as I have tended to feel groggy the day after I take the pill. Today I took my dexamethasome (10 mg) pill and I will try and sleep without Ambien tonight.

I have generally felt good this week.

February 9 ,2009

2010-02-09T14:00:00.000-08:00

Today was Velcade infusion day; no big deal; CBC's were all normal. For some reason my right toe stated aching about 1 hr after the infusion was completed. side effect???

Tonight, however, is when the fun begins with insomnia and constipation.

February 8, 2010

2010-02-08T09:47:00.000-08:00

I just got the results of my February 1 labs: Creatine was 0.9, the lowest ever (good); Igg was 1363 (the lowest ever; M-spike was 1.0, down 0.2 from Jan 11; Kappa LC was 3.02, down 0.37 from Jan 11. It appears that the reduced Velcade infusions of 1/wk are working. The CBC values were good, except that the RBCs were a touch low.

I have dropped 6 pounds while on a modified Atkins diet.

The rash that I had developed over Christmas turns out not to be anything specific; I will just apply a topical cream twice a day.

My blood glucose levels were high when I last went to my GP; I am having these values rechecked.

January 27, 2010

2010-01-27T05:39:00.000-08:00

Wednesday morning: I didn't sleep at all Monday night after my double whammy of Zometa and Velcade; however, I felt OK on Tuesday and slept fine on Tuesday night. Went to the eye doctor Tuesday morning; and I will need to have cataract surgery. This is no surprise as this had been suggested more than a year ago before I had been diagnosed with MM. Went ahead and scheduled the procedures, which will be intermixed with my Velcade infusions over the next few weeks.

They have a new eye implant that is supposed to make you see so good that you don't need glasses; right now they will be determining if my eyes are candidates for such implants. The new implants, however, are not covered by insurance so the cost will be on my own nickle. The standard implants, however, are covered; but I would continue to need to use glasses.

The rash that developed on legs and back appears to be diminishing on its own; it certainly hasn't gotten worse. I see the dermatologist next week and maybe he can tell me something one way or the other.

January 25, 2009

2010-01-25T13:57:00.000-08:00

Today was a double whammy day; I receive infusions of Zometa and Velcade at a single sitting. I hadn't done this for more than 8 months. In general, I prefer to receive each at a separate sitting as taking both at one sitting is tiring on me. Nevertheless, I did both today without much effort; when I came home I had lunch and then took a nap. Will probably be up tonight with the dex that I took along with the Velcade. Anyway no big deal at this time.

CBC's and BP were all ok. Nothing else to report on the Myeloma front.

Have an appointment to have my eyes examined tomorrow; suspect cataracts.

Have started my taxes on TurboTax; ugh!!!

My wife will travel to Georgia on Thursday for a business meeting and then come back either Sat, or Sun.

January 19, 2009

2010-01-19T19:25:00.000-08:00

I had a Velcade Infusion today; nothing much to say; it went easy; but the side effects probably won't show up until this weekend. CBC labs today were in the normal range except RBC, which was slightly low at 4.9 million/cu mm.

I also got the results of January 11, 2010 myeloma markers (after 6 Velcade Infusions since 11/04/09):

Igg had increased from 1414 (11/04/09) to 1547 mg/dl--this is higher but still in the normal range. Iga increased from 26 (11/04/09)to 35 mg/dl--here the lower normal is 71--thus Iga is still low but closer to normal.

M-spike remained constant 1.2 g/dl. The value was 1.2 on 11/30/09 and 1.1 on 11/04/09. Essentially the M-spike is remaining constant.

Kappa Free Light Chains increased from 2.80 mg/dl (11/04/09) to 3.39. This increase concerned my O/H and I will be increasing my Velcade dosage from 2 infusions per three week period to 3 infusions per three week period (i.e., once a week for the foreseeable future). Lambda Free Light Chains increased from .2 mg/dl to .78 and are now in the normal range. The Kappa/Lambda Ratio decreased from 14.0 to 4.35; while still high the ratio is much closer to the normal range of 0.26-1.65 than it was back on 11/04/2009.

The rash on my legs and back still remains but is generally unchanged. My O/H has sent a letter and referral to my dermatologist for a biopsy and an opinion. I should have this issue resolved in the not to distant future.

My wife and I spent the weekend throwing out old stuff (i.e., 1960s textbooks, old files, household junk) and bundling up old (but usable items) for charitable donations.

My neuropathy has increased somewhat from my last post; but I am still mobile and doing household projects.

I now have 24 Velcade Infusions (16 during last spring and summer and 8 since 11/4/2009. Cancer markers definitely decreased last spring and summer; since renewing Velcade in November the results are not clear cut; the markers are often contradictory and diagnostic trends are unclear.

For the time being, the plan is to increase the frequency of velcade infusions to once a week and continue the 10 mg dex pill once a week. Overall, exclusive of the neuropathy, I feel good and am leading a more-or-less normal life.

January 8, 2010

2010-01-08T19:30:00.000-08:00

The neuropathy resultant from my December 22 and 29, 2009 Velcade infusions is starting to wane; the neuropathy probably peaked between January 2-6, 2010. The neuropathy just manifests itself as weakness and lack of sensation below the knees and tingling sensations in the hands and feet. Yesterday was dex day; and I only slept about 3 hours last night; but other than being a little bit sleepy today was fine. I took an Ambien at 8:00 and hopefully I should sleep fine tonight.

Occasional rashes about the size of dime to a quarter have broken out on my legs (6 total); this likely is an allergic reaction to the Velcade. The don't particularly itch and are more of a nuisance than a problem. I have my O/H appointment on Monday along with my blood work. We plan to discuss the rashes and ascertain the progress of my chemotherapy. If cancer markers go down, the I will continue with Velcade; on the other hand if they start going up, then another drug, such as Revlimid will be considered.

Tomorrow, we will drive north to have Christmas with the Georgia portion of the family; we had Christmas with Florida portion at Christmas. Celebrating holidays with two distinct and geographically separated families is often difficult (Atlanta, Tampa, Orlando, Gainesville, Valdosta, Memphis and St. Pete).

January 1, 2010

2009-12-31T22:27:00.000-08:00

Well it is a New Year; 2009 was a bummer inasmuch as I came down with MM. However, things appear to be going reasonably well. I haven't ever had a fever; I haven't ever been nauseaus; I haven't ever been in pain. I , however, have had joint andleg aches, mild constipation, and insomnia. Back in the summer, the Velcade program of 4 infusions every three weeks induced an allegric rash; this is gone for the most part but I do have an occasional red splotch. Neuropathy has been my primary problem; but I am dealing with it and I still drive, walk, and make minor home repairs. If you saw me you would not think that I had cancer.

This week I had Zometa infusion #9 and Velcade infusion #22. Also yesterday (12/31/2009) was my dexamethasome day. CBC counts and creatitine were all ok. The neuropathy from the Velcade typically peaks about 4 days after the infusion, this should be Saturday (1/2/20100).

Nothing much else to say; I feel reasonably good right now and will try and take in a movie this weekend.

December 22, 2009

2009-12-22T19:31:00.000-08:00

Today was Velcade day; CBC bloodcounts were ok, except for WBC, which was 4.68. The labsheet showed this value to be low; however other lab sheets from previous lab analysis indicate this level to be in the normal range; I'm somehat confused as I have had lower WBC counts in the past.

Velcade was no big deal; however the chemo-lab is so so so slow. Was in 8:45 am and out 12:15 pm. All in all a 4+ hour sesion. No reactions so far; will wait and see as it takes about 3 days (about Friday) to 4 days (Sat.) for the side affects to fully mainifest themselves.

Merry Christmas everyone

December 18, 2009

2009-12-18T00:07:00.000-08:00

The neuropathy resultant from my December 8, 2009 infusion is still with me, even though almost 10 days have passed. It climaxed on December 11-12; since then it has gradually diminished; but I'm not to the point where I was when this Velcade 1/2 cycle began on December 1. My next Velcade infusion is scheduled for 12/22 and any neuropathy resultant from that infusion will be added to any remaining from the 12/8 infusion. It thus appears that the neuropathy will be increasing somewhat with time. Of all the side effects, neuropathy is the worst. Everything else has been quite minor.

Thursday, yesterday, was dex day; no big deal but didn't sleep well Thursday night.

Last weekend we went to a wedding near Atlanta and then spent 2 nights in the mountains. Weather was poor; glad we are back in Florida.

Nothing else to report. Except for spending Christmas in Tampa; we will just take it easy and read a few books and see a few movies until after the New Year.

December 10, 2009

2009-12-10T17:28:00.000-08:00

Date M-spike (g/dl) Kappa LC (mg/d) Igg (mg/dl) Status
3/20/09 2.7 96.00 3962 Initial
4/27/09 1.9 41.00 2176 After 4Velcade Infusions (cycle #1)
5/29/09 1.2 30.43 1623 After 8 Velcade Infusions (cycle #2)
6/9/09 0.9 30.00 1555 After 12 Velcade Infusions (cycle #3)
7/9/09 1.0 28.56 1431 After 16 Velcade Infusions (cycle #4)
7/28/09 1.2 26.40 1462 No infusions since 7/2/2009
8/25/09 1.1 27.40 1575 No infusions since 7/2/2009
9/23/09 1.0 27.40 1413 No infusions since 7/2/2009
11/4/09 1.1 28.00 1414 No infusions since 7/2/2009
11/30/09 1.2 After 18 Velcade Infusions (cycle #4.5)

Today was dex day; will drive to Atlanta tomorrow to attend wedding. Went Christmas shopping; legs tired, but otherwise OK

December 8, 2009

2009-12-08T11:14:00.000-08:00

I went today for my Velcade infusion (#20 overall). No problems and I feel ok; I, however, could actually feel the neuropathy increasing as the infusion was ongoing. My next infusion is 12/22/09; and hopefully, the neuropathy will diminish over the next two weeks. When I had infusions in November, I noticed that it took about 7-8 days for the neuropathy to diminish. Perhaps it will be the same this time.

My creatinine today was 1.2 mg/dl, the same as it was on November 30, 2009, which is a day that I had diarreha. This bothers me as it is at the upper range of normal. I really need to make a concerted effort to increase my fluid content.

CBC counts today were all within normal ranges; results for Igg and K LC were not yet avialable; My M spike, however, increased from 1.1 to 1.2 g/dl. This bothers me as this value was obtained after Velcade infusions #18 and #19. Also this if first time my M-spike has gone up while I have been on Velcade (it did go from 0.9 to 1.1 when I was off Velcade for 4 months). I am scheduled for Velcade on 12/22, 12/29, 1/12, and 1/15. If the M-spike goes up; then I probaly go onto Rev.

December 5, 2009

2009-12-05T06:06:00.000-08:00

The neuropathy (which I attribute to the last Velcade infusion-4 days ago) did not go away as I had hoped; however, it is manageable for the time being. Slept 6 hours Thursday night after taking Dex and 8 hours last nigt (Friday). I am finding that the day that I take Dex generally is good.

Friday was "date" night; we went to a movie and then out to dinner; probably should have laid off the last glass of wine as I have a slight headache this morning.

It is a cool rainy day; so I will just drink hot chocolate and watch football games.

December 3, 2009

2009-12-03T13:19:00.000-08:00

It's been two days now since my Velcade infusion; some minor constipation, some moderate insomnia (6 hours of sleep last night), and some increase in neuropathy. Hopefully the neuropathy will wear off as I am on 2-infusion 3-week cycle in lieu of a 4-cycle infusion cyle. Took dex this morning and will have likely have some insomnia tonight. Generally, I feel good the day that I take the dex as it picks me up. I will have my next Velcade infusion next Tuesday (12/8/09), and be off unitl 12/22/09.

Friday is "date " night so we will take in a movie as well as go to a nice place to eat.

Fredrick Joesph of Drexel Burham Lambert

2009-12-02T03:19:00.000-08:00

Fredrick Joesph who was the CEO of the junk bond firm (Milliken's old firm) Drexel Burham Lambert died of MM yesterday (December 1, 2009). He was 72.

December 2, 2009

2009-12-02T02:41:00.000-08:00

Sunday evening I came down with a bout of diarrhea; ended up having taking pepto-bismo through the night. Really don't know what was the cause; but most likely it was something I ate. On Monday morning, I had my blood work for that days Zometa infusion and Velcade, which was to be done on Tuesday morning.

Creatinine was 1.2 mg/dl, which is the upper end of normal. If the level had been 1.3, then the Zometa could not have been given. Now, I am attributing the relatively high level of creatinine to the diarrhea; the nurse at the infusion center recommended that I drink a gallon of water per day; and for every cup of coffee or glass of wine/beer/bourbon that I drink, match it with an equal volume of water. I don't know if I can drink a gallon of water per day; but I think I should be able to do 2-3 quarts per day.

About 2-3 hours after the Zometa infusion, my knee and ankle joints began aching; this has happened before and generally lasts 2-3 days; hopefully this minor side-effect will be gone by tomorrow (Thursday).

My CBCs were fine; WBC = 5.0 thousand/cu mm; hemoglobin = 15.1; hematocrit = 43.7 %; platelets = 251 thousand/ cu mm; and RBC = 4.56 million/cu mm. MM markers were sent out; the results should be back late this week or early next week.

Yesterday (Tuesday), I had Velcade infusion #19, which was no big deal (no nausua). Ended up taking a nap Tuesday afternoon for about 2-hours; but I could not sleep Tuesday night even with an Ambien. Its about 6:00 am Wednesday now and I am up but don't feed particularly tired.

I weighed myself this morning and my weight (nude) was 219#, which is high for me; I weighed 209# on January 1, 2009 and I was overweight then. I really need to make a concerted effort to get down to 199#, which would be ideal for my 6'4" frame. Between 1984 and 2003, I was an avid runner, often running 5-10-15K races; at that time my weight was in the mid 180s.

My next Velcade infusion #20 is scheduled for December 8, 2009.

November 29, 2009

2009-11-29T07:15:00.000-08:00

My next cycle of treatment starts tomorrow, November 30 with Zometa (#9) in the morning and the O/H appointment in the afternoon. Tuesday is Velcade treatment #19, with #20 comming on December 8.

I got through the previous treatment cycle (Velcade #17 and #18) without much difficulty; some constipation and some increase in neuropathy. I also had some minor rash patches on my legs, which had a slight but not particularly bothersome itch. The constipation lasted for about 3 days have Velcade treatment #18. The neuropathy increase lasted about for about 8 days after Velcade treatment #18; but has now returned to a pre-treatment #17 level. The rash is still present but does seem to be diminishing. Weekly 10 mg of dexamethasome continued with no side-effects now (there were some sleepless nights in the very beginning but with Ambien, I now sleep 6+ hours the night after taking the pill). Overall I feel good but still continue to have weakness in legs and knees.

We went to St. Pete for Thanksgiving. Friday we went strolling to in downtown St. Pete and then had a very enjoyable lunch on the Gulf and a short time on the beach where I enjoyed a cigar.

November 20, 2009

2009-11-20T07:35:00.000-08:00

Well, last Tuesday's Velcade infusion has now begun to have some side effects; was lethargic on Thursday with some constipation. No temperature or nausua, however. Also took my dexamethosome on Thursday (yesterday) and had difficulty going to sleep; only got about 4 hours sleep. Will take a cat nap today.

I will be off Velcade until after Thanksgiving, which will give my body some time to recover. Then in early December, I have my bloodwork, H/O appointment, Zometa, and Velcade (#3 of new cycle).

November 18, 2009

2009-11-18T03:46:00.000-08:00

Received the last of my November 4, 2009 lab results. The Kappa LC was 2.80, which is a slight increase from September 23, 2009 of 2.74; normal is below 1.94.

There has been no reaction to last Friday's dexamethasome; I slept about 6 hours Friday night and 8 hours Sat. night.

This past weekend was very good; felt good and the weather was very nice (sunny and low 80s). My wife and I worked on household projects and then went to an art festival.

Sunday afternoon I drove to Atlanta; had a meeting on Monday morning and then drove back to Florida. 725 miles over a two days. Was tired Monday evening and Tuesday morning; but felt ok when I went for my Velcade infusion Tuesday afternoon. As of 8:00 am Wednesday, I have had no reaction to the Velcade, and I feel ok. CBC's taken yesterday were in normal range and were slightly improved from those of November 10, 2009. By improved, I mean that they had moved toward the center of the normal distribution. BP was ok.

I must say that the drive through Georgia on I-75 was a drag; I had forgotten how ugly my native state is. There are probably more bill boards per mile of interstate in Georgia than any other state. You can see a marked difference as you cross the Georgia-Florida line; it's quite noticable.

November 13, 2009

2009-11-13T11:53:00.000-08:00

Today is dexamethasome day; took 10 mg this morning at 8:00. No reaction or side-effects so far; but this is typical for me.

Insomnia has picked up since I had my Velcade on Tuesday; but I have been getting about 5 hours of sleep each night; hopefully tonight (with the additional dexamethasome) will not be bad.

Other than the insomnia and some very minor constipation, I tolerated the Velcade well. My big concern, however, is neuropathy. This will most likely show up over a longer period of time.

I have a project in Atlanta on Monday; so I will out of pocket until next Wednesday or so.

November 12, 2009

2009-11-12T14:58:00.000-08:00

The x-ray results to check on the lesion in my right upper arm have come in; it is still there; but it is less than 1 centimeter in diameter. It was small to begin with and thus it seems not to have grown since I have been taking Zometa. Bottom line is that it doesn't seem to be enlarging.

November 11, 2009

2009-11-11T08:11:00.000-08:00

I had my first Velcade IV yesterday (17th overall; 1st after four month layoff); no problems and no obvious side-effects yet. The dosage was the same; but I will only be receiving 2 infusions in a 3-week cycle instead of 4. I have a schedule that will carry me through mid-January of 2010; thus I can do my holiday planning.

I now have the results of my remaining November 4, 2009 lab tests. Igg is normal going from 1413 mg/dl to 1414 mg/dl; this is in the normal range and is essentially no change. Albumin had been a little high back on September 23 at 4.1 g/dl; now it is in the normal range at 3.8 g/dl. Total protein remained normal and was 6.8 g/dl on November 4.

My M-spike increased from 1.0 g/dl on September 23 to 1.1 g/dl. I am not surprised by this slight increase as I had been off Velcade for 4 months (but I still was on weekly dex of 10 mg).
Hopefully the renewed Velcade infusions will reacivate downward trend.

November 10, 2009

2009-11-10T06:48:00.000-08:00

This and that:

Went to see the O/H last Wednesday: CBC blood work was generally ok. WBC = 5.2 (ok); Hemacrit = 39.1 (ok, but low); Platelets = 244 (ok but they have dropped over past 3 months); RBC = 4.1 (low, don't like this). At the time of my initial diagnosis, I had a lesion on my right upper arm bonel; since I had been on Zometa for 7 infusions, we decided that a re-X-ray would be appropriate (I don't have the results yet). The Igg and M-spike results are pending; I generally don't get them for about a week.

It was decided that I would go back on chemo; starting today (but 1/2 frequency- 2 infusions in a 3-week cycle). It has now been 4 months since my last Velcade infusion. While I am not overjoyed about going back on chemo; I always knew that the Velcade interruption was only temporary, primarily to recover from the neuropathy (which I still have but much less than back in July and August).

I did continue the dex throughout this 4-month period; the dex doesn't affect me much anymore and it is just a pill I take once a week.

On Thursday, my wife and I went to Ormond Beach for a 3-day mini vacation. We stayed at the same condo that we had stayed at immediately following my bone marrow biospy back in March.
At that time (and before my first chemo), I became tired after a short walk on the beach; this time we walked much further and I was less tired. So there has been some improvement in my walking stamina since March.

Novewmber 3, 2009

2009-11-03T14:35:00.000-08:00

This was Zometa day; creatine ok; infusion no big deal. Tomorrow will be monthly checkup with new blood values.

October 31, 2009

2009-10-31T15:33:00.000-07:00

Just back today from 8 days in New England. Feel good. I must be getting used to the dex as I now sleep the night after as long as I take an Ambien.

Monthly Zometa infusion is Tuesday and monthly blood work is Wednesday (along with monthly visit to H/O).

October 18, 2009

2009-10-18T16:51:00.000-07:00

Nothing much is new; spent much of the past week making house repairs or repairing appliances. Probaby ate too much and drank too much wine. My wife and I found a wonderful place to eat; so we went there twice (last Sunday and then again today).

I feel about the same or slightly better.

October 7, 2009

2009-10-07T09:28:00.000-07:00

I had my monthly Zometa infusion yesterday; and felt quite achy the rest of the day. I feel reasonably good today. It seems, however, that the achy-feelings go away within two days. Zometa infusion (counting preliminary bloodwork) takes about 1 1/2 hours, which is just time to read a magazine or two.

I have learned not to take Zometa on the same day as Velcade chemo. If I have to take both, I would just choose separate days.

If there are any other Zometa users out there reading this blog; what has been your experience?

October 4, 2009

2009-10-05T14:00:00.000-07:00

In 1986, I took out an cancer insurance policy. I did this because both of my parents had come down with cancer. My father had died of it; but my mother survived eventually dying of heart failure some 29 years later at age 94.

Such a policy is generally not recommended by consumer advocates; however, with a family history of cancer, I went ahead and took out the policy 23 years ago. So for 23 years, I made annual premium payments.

Of course, I did not know that I would contract MM; however, once I contracted the disease, I did submit a claim about two weeks ago for my treatments to date and my claim was quickly paid. The payout was approximately equal to 10 years of annual premiums and is about twice my out-of-pocket expenses to date. My total medical expenses for everything related to my MM now total about $60,000; however, virtually all of this has been paid insurance and my out-of-pocket expenses (including dedcutibles) are less than $1000.

The claim forms were somewhat complicated; but the instructions were good; and if one reads them carefully, they are straightforward.

Since I am only in partial remission, it is likely that I will be submitting additional claims in the future.

For the readers of this blog, I would simply say that if there is a history of cancer in your family, then obtaining a cancer insurance policy might be prudent. What you get from such a policy is method of paying your deductibles and out-of-pocket expenses.

October 2, 2009

2009-10-02T13:06:00.000-07:00

Have received the results of latest blood work that was done on September 23, 2009.

Igg is down to 1413 mg/l from 1575 mg/l; that's good and Igg is now in the normal range.

M-spike is reported as 0.1 g/dl; however the lab report narrative suggests that the actual M-spike is 1.0 g/dl. I need to follow through on this to verify which value is correct. Even if 1.0 g/dl is correct, it still will be a decline from the 8/25/2009 value of 1.1; this is about a 9.1% decline.

Total protein is 7.1 g/dl, which is a decline from 7.3 g/dl; this is an improvement.

September 30, 2009

2009-09-30T01:21:00.001-07:00

Update:

It is 4:30 and I wide-awake as Tuesday was my dex day. I end up watching TV and Internet surfing. I should sleep ok tonight and be fully rested by Thursday.

Well it has been 6 months since my official diagnosis on March 30, 2009. I first went to the family doc on February 23; but testing and the bone marrow biospy took several weeks.

I still do not have the results of the latest M-spike, Igg, Kappa LC blood tests that were collected on September 23.

I am feeling generally ok except for weakness in the legs and will try and start walking again today. Last year in late August, I spent a week hiking at high altitudes in the Tetons willout any difficulty; a year later, I waddled like a duck. However, with being off Velcade for 2 1/2 months, the neuropathy has diminished and my walking is improved; but still a long way to go.

September 24, 2009

2009-09-24T17:28:00.000-07:00

I went to see the O/H yesterday. CBC bloodwork was within the normal range; but generally at the lower end of normal. The results of Igg, M-spike, and Kappa LC should be forthcoming in a couple of days.

I have been off velcade since July 11; but have continued to take Dexamethsome (10 mg/week). Neuropathy has lessened somewhat since last post and it is easier to walk.

The general plan is that if Igg, M-spike, and Kappa LC drop, I will stay off velcade; if these parameters stay about the same or increase, I will go back on velcade; but a reduced rate. IV Infusions on days 1 and 8 and then restart on day 22; with monitoring every on day 22.

Zometa will continue on monthly basis; I generally have achey bones 2-3 days after zometa; but that appears the only side effect.

September 11,2009

2009-09-11T05:30:00.000-07:00

When I came down with MM, there were other minor miscellaneous medical issues that I needed to address:

DRY MOUTH: I now have my teeth professionally cleaned once every three months and use Biotene toothpaste, mouthwash, and a gel to keep gums wet. This stuff is expensive; however, if it prevents a problem on down the line, then it is worth it. I also brush several times during the day. So far, no problems.

MINOR ACHES AND PAINS: Lately, my legs have been achey and I still have hot and cold feet from the neuropathy. My physician gave me a prescription for Tramadol, which is a low-level narcotic, about one step above Tylenol. Tramadol keeps the edge off the minor aches and pains and helps me sleep at night.

VISION: I had my eyes checked by a retina specialist: I have minor cataracts; but I will deal with this later.

MINOR INFECTIONS: I developed a minor infection of the testes and the urologist gave me a prescription for Ciproflaxin (which is free). If I hadn't had MM, I probably would have just let this go; but I am concerned than my inmunce system, which is still ok, might weaken and a lingering minor infection could be a problem.

NEUROPATHY: Neuropathy in feet is handled by an over-the-counter sports cream and hot soaky baths.

CONSTIPATION: Prior to going on chemo, I was rarely constipated (perhaps every other year or so); now I use a stool softener, when I am on chemo or Zometa. This seems to prevent problems.

FLU: Flu shots (not swine flu) will be available here on October 1 and I will get the shot (about $25.00) on that day. I had some bad bouts with the flu back in the past; but once I started taking flu shots, I haven't had the flu.

I have now been off chemo for two months now and neuropathy is lessening; it is my general impression (quite unscientific) that it takes about one month of no chemo to offset one velcade cycle.

September 1, 2009

2009-09-01T09:37:00.000-07:00

I have received the results of 8/25/2009 lab work. WBC = 6.10 (ok); hemoglobin = 16.3 (ok); hematocrit = 45.7 (ok); platelet count = 297 (ok); RBC 4.77 (ok); calcium in blood = 9.8 (ok); creatinine = 0.89 (ok).

Igg = 1575 (high, up from 1462 on 7/28/2009); M-spike = 1.1 (down from 1.2 on 7/28/2009); Kappa LC =27.4 (about the same as 26.5 on 7/18/2009). Kappa/Lamba ratio, however, has improved to 17.13. In summary after 6-weeks without chemo, the lab values have not changed significantly and I will continue for another month just taking the dexamethsome pills once a week. I restarted Zometa today and will continue on a once a month basis for the next two months.

Keeping off the Velcade for anothe month should allow the neuropathy to improve; there has been a noticeable improvement over the last two weeks; hopefully I can expect similar improvement in the future.

Achy legs, knees, ankles, and leg weakness continue to be the only symptoms of my mm.

August 23, 2009

2009-08-23T15:13:00.000-07:00

I started chemo with Velcade + dex on 4/13/2009. Prior to starting chemo my numbers were Igg = 3982, M-spike = 2.7, and Kappa LC = 96. After the first cycle, the numbers dropped as follows; Igg = 2176, M-spike = 1.9, and Kappa LC = 41. After the second cycle, the numbers dropped still further to Igg = 1623, M-spike = 1.22, and Kappa LC = 30.43. After the cycle, the numbers dropped still further and I was happy as clam: Igg = 1555, M-spike = 0.9, and Kappa LC = 30.

Up until this point I considered chemo as a "walk in the park"; but with cycle #4 ,which began on June 29, all hell broke loose. During this cycle I began to experience significant neuropathy, particularly in my feet. Also once the cycle was completed, I broke out in rash that covered my arms and legs. Because of the neuropathy and the rash, cycle #5 was cancelled.

A revisit to my O/H in late July had the following numbers: Igg = 1462, M-spike = 1.2, and Kappa LC = 26.42. Cycle #5 was continued to be held abeyance.

My next scheduled appointment is for August 25; this will be about 6 weeks since my last chemo; the rash has gone away but the neuropathy remains. I will keep you up to date regarding my course of treatment from this point on.

August 16, 2009

2009-08-15T11:33:00.000-07:00

At my first visit to the O/H, my initial blood work on March 20 was as follows: CBC's were all in normal range as were kidney functions. Igg was 3982, M-spike was 2.7, and Kappa LC was 96. Not good but not that bad. A total x-ray bone scan was also done that same with only only one small small spot on my right upper arm where there was a lesion; there also were some areas on my spine and hips where there were vague suggestions of lesions. Because the lesion was relatively small, the O/H recommended treatment via Zometa in lieu of radiation.

The first post-diagnosis O/H visit was the next day; March 31. The recommended course of treatment was Zometa, once a month; chemo (Velcade + anti-nausea+dexamethasome) as an IV with a three week cycle (M and Th of weeks 1 and 2; and then 1 week off); and 10 mg of dexamethasome (as a pill) once a week. The Zometa IV was started three days later on April 2; the initial Velcade, however, was postponed until April 13 because of some un-related personal matters.

August 15, 2009

2009-08-15T05:22:00.000-07:00

Yesterday was a crappy day; didn't feel good and my wife and I cancelled plans for going out for dinner. Today seems better; and we will try and go out tonight.

Yesterday, I noted that the time-frame from my initial doctor visit to diagnosis was 5 weeks. My O/H also gives me my CBC (basic blood work) within 1/4 hour of the blood being drawn. So far I have been impressed with the professionalism of the O/H office. Blood work that has to sent to out-of-town laboratory takes about 5-7 working days; but again this is relatively quick.

While I will describe my chemo in later posts; overall, the actual IV process is simple and straight-forward. I didn't want a port in my chest and elected to have IV, switiching arms back and forth (left on day #1 and right on day #2, etc.). This, so far, has worked well with no complications.

Myeloma Dawg

2009-08-14T11:28:00.000-07:00

Hello: My name is Bill and I have Myeloma and I live in Florida. I started this blog mainly as a means of sharing information of my illness with others in the hopes that they can share information with me. As you probably can tell from the use of the word "dawg" that I graduated from the University of Georgia, albeit back in 1963.

Up until I was diagnosed with myeloma, my health was excellent, if anything it was super-excellent.

The very first symptom came last Thanksgiving (2008) when I felt tired after walking with my granddaughters in the north Georgia mountains. I just assumed I was out-of-shape and needed to start exercising. The tired feeling went away quickly and that was that. In January, my wife and I went on cruise and there were some times that I stepped on her feet while dancing; this I just assumed was just due to the ship slightly rocking. In February, I began having slight balance problems and assumed that I needed a better pair of shoes. Basically, it felt that I was always walking on a mattress; just a soft cushy feeling. Also I noticed that throughout January and early February, my legs were progressively becoming weaker.

On February 23, on impulse, I visited my family physician and discussed my gait/leg weakness problem with her. She, at that point, ordered a bunch of blood, urine, and x-rays. The testing went on for several weeks; but there were no true delays; a test would be run; the results would come back a few days later; and some additional tests would be run. On March 16, she notified me that I had abnormal amounts of protein in my urine and that my Igg level was high (about 3750 mg/dl) and that she recommended that I schedule an appointment with a oncologist/hematologist (O/H). This was done: and I had my first appointment was four days later on March 23, where additional blood and urine testing was done, as O/H suspected myeloma. The quickest way to confirm myeloma, however, would be to do a bone marrow biopsy. Again this was quickly done, and the test was done the following Wednesday, March 25. On Monday evening (March 30), the O/H called me to tell that there were 30-35 percent cancer cells in the marrow and myeloma was confirmed.

From start to finish, it only took 5 weeks from my initial doctor visit to diagnosis. None of the testing was difficult or troublesome. I had heard that a bone marrow biopsy was painful; mine was not; and after the procedure I went on a mini-vacation to the beach.