Larry’s Medical blog

Sibs,

Monday was the end of Chemotherapy Cycle 4 and 12 total weeks of chemotherapy. As usual, Irene and I met with the Myeloma physician and the research assistant to review my progress and discuss future treatment, after which I began Cycle 5 with the regular experimental Velcade chemo infusion, a supplemental Neupogen injection for white cell count improvement, and my monthly pneumonia-fighting inhalation therapy treatment of Pentamidine.

In general, my treatment continues to go well and the researchers report my response as being excellent.

LAB WORK, BLOOD COUNTS

On Tuesday my white cell counts and ANC levels had declined from Friday’s numbers – but were still within normal limits. Dr. J’s standing orders are for a Neupogen boost when the trend indicates that I could be at risk for infections, bugs and germs, and thus the Neupogen injection.

SIDE EFFECTS

After 12 weeks of chemo, some side effects that initially were minor annoyances have become more noticeable and more difficult to ignore. The newest arrival is something described in the chemo drug literature as “numbness and tingling in the extremities”, which could better be described as “pain in the contact area of the heels and balls of the feet when walking, and on fingers and the palms of the hands when touching items (keyboards) and gripping objects.” This pain is not excruciating, debilitating, or even strong – I have required no pain medication for any of my treatment thus far – just enough to be a reminder while performing everyday activities (although walking a long distance would probably become very uncomfortable). Dr. J has said that the pain level will increase with each subsequent chemo cycle and that I should not be timid about requesting pain medication should I feel it is necessary.

You may recall that in my last Chemo Update I talked about pain in my right hip/pelvis, and that an x-ray and MRI were ordered to assist in isolating the problem. The good news is that both tests came back negative – nothing’s broken; no sign of Myeloma hot spots on the bone. That leaves two likely possibilities. The first is that this pain is a side effect of the Velcade (a duplicate symptom, hip pain, has been seen in one other patient). The other possibility is that the pain is being “telegraphed” from another area of the body and that my brain only THINKS it’s my hip that hurts. In my case, the Myeloma lesion on my spine at L3 (lower back) is affecting the nerve that serves my right hip, and perhaps that nerve is the culprit. More tests have been ordered…

BONE MARROW TRANSPLANT

Thank you for submitting blood samples to test for a bone marrow/stem cell donor match. At this writing, the first two tests are back (Laura and Mary) and neither of those were a match. The Myeloma assistant warned that this is not “official” – which I interpreted as more of a political issue (“Wait until the Bone Marrow Transplant Coordinator tells you officially” (who is on vacation this week…. thus no news from her); than a medical issue (they stare at the same on-line lab results that the BMT people will see).

This is disappointing news, because these were my two strongest donor candidates: Laura who thought she could influence the results via positive thinking (“I just KNOW I’ll be the best match for you and this is going to work out fine!”); and Mary who was certain that her intensive donor training diet of dark chocolates and red wine would bring success. 😉 David and Micki sent in their samples later, results will likely be back next week…

The first transplant date is still not firm, but it is likely to occur after Chemo Cycle 6 (mid September). Confirmation should arrive today (Friday, 7/27).

That’s the latest news from Hamburg,

-larry

Sibs,

Monday marked the end of Chemotherapy Cycle 3 and Tuesday the beginning of Cycle 4 of my treatments. As customary, Irene and I met with the Myeloma research team Tuesday to discuss my progress and the future direction of treatment. In general, this is all good news – response to treatment is going well but there has been a surprise.

Details follow. Once again a continuing education preparing us for some tough decisions:

YESTERDAY’S LAB WORK, BLOOD COUNTS, and a 4th of July picnic

My blood counts look good, but not as good as two weeks ago. Although my platelet counts and red cell numbers are within normal ranges, my white cell counts have been dropping for weeks and finally dipped below normal (to be expected, they’re hitting me with drugs that kill them). This necessitated a supplemental Neupogen (white cell builder) shot during my clinical visit yesterday. If I react similar to last time, my white cell counts will climb into normal ranges by Friday’s chemo clinic appointment. Unfortunately, this immune-depressed condition threatens my attendance at Micki’s 4th of July picnic today, where there are supposed to be no less than 6 young children (“bug breeders”!; -). We are watching the weather closely. It’s raining right now. If the rain continues we would all be gathered indoors and I will not attend; if it clears up and we can be outdoors with fresh, circulating air, we’re going. [After catching a “minor bug” 5 weeks ago and experiencing the effect it had on me physically and on my blood counts, I take those immune-suppressed precautions VERY seriously]

SIDE EFFECTS

Although I have been reporting to you that I have no serious chemo side effects, I experience minor negative stuff (tiredness, sensitivity to direct sunlight/heat, some difficulty sleeping, lingering metallic taste with diminished taste from foods, digestive irregularity) and one positive effect (minor aches and pains related to muscles and early arthritis in my elbow disappear with the strong steroids I’m getting – powerful stuff!). You also know that each Chemo Cycle is three weeks long and includes two active weeks of chemo drugs/injections plus anti side effect drugs, followed by one inactive week of no chemo drugs – only side effect drugs. Naturally, during that last “no chemo” week many things return to normal – I sleep through the night, food tastes better, my stomach and intestines function without over-the-counter drug assistance, I am not as tired… and my slightly arthritic elbow starts to bother me again. Unfortunately, when the steroids wore off this time something else started bothering me – pain in my right hip/pelvis (surprise!). I reported this to Dr. J (Jakubowiak) yesterday and we do not know what it is – could be a slight pelvis fracture (keep in mind that Myelome attacks and weakens bones); could be a new lesion similar to the one on my spine. Neither of these are good news: took x-rays of the hip/pelvis yesterday (no results yet); MRI scheduled for the 17th. Stay tuned. Until then, with yesterday’s resumption of steroids in Cycle Four I am already pain-free… but I’ve got to be careful lifting any substantial weight and in exerting myself because any pain is only masked. The problem and the potential for additional problems are very real.

THE BONE MARROW TRANSPLANT DECISION

No, no decision yet, probably not for months. 😉

Dr. J has reviewed the clinic notes from our trip to the BMT (Bone Marrow Transplant) folks last week, but has not yet talked to them (he was in Greece at a Myeloma conference). We discussed the alternatives once again, and although he agrees that it is a good thing to proceed with sibling donor matching in the event that we elect to take that route, he is not as … enthusiastic… as the BMT folks about allogeneic transplants due to risks and lifelong side effects. There have only been two published research studies on the combination of autologous (self) stem cell transplant followed by an allogeneic (donor) transplant. A French study, published in the journal Blood, heralded incredible results that caused a huge initial stir in the Myeloma community. However, after closer examine of their “random” patient selection, procedures, and data analysis, the study has been bludgeoned (blood-geoned? har har) by Myeloma experts and dismissed as invalid. An Italian study, published in the Journal of the American Medical Association, followed the French study chronologically (but not procedurally, thank god) and is generally regarded as the only credible research on this autologous/allogeneic combination. The Italians also demonstrated that autologous/allogeneic is successful, but not wildly successfully. In many cases, double-autologous transplants were as successful as the autologus/allogeneic combination. Dr. J suggested that in those cases – especially in patients like me with good chemotherapy responses – the risk does not equal the reward. “It’s your decision, BUT…” ;-). So, we are still in a wait-and-see mode, probably until after getting results from autologous transplant #1.

THE EXPERIMENTAL DRUG STUDY

I’m pretty sure that you all know that the chemo drugs I am taking are within a strictly regimented, tightly controlled, and experimental study. Not that the three drugs (Dexamethasone, Revlimid, Velcade) are all new (Velcade is), but the combination and dosages – and the data collection/collaboration/feedback process involving researchers at 7 institutions – is what makes this an experiment. Dr. J (my doc and UofM’s lead Myeloma researcher) attended a conference last week in Greece. Preliminary results were presented and received lots of attention by other researchers. There is little other reliable data on Multiple Myeloma research (as evidenced by my statement under Bone Marrow Transplant) and even less information on successful treatment programs. As a result my study has garnered global attention; early results remain positive (Dr. J “much better than the Italians”) ; and I am among the more successful guinea pigs in the group.

That’s the news from Hamburg,

-larry