January 1, 2010

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

October 31, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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.