Larry’s Medical blog

It’s been a long, long time since I have posted anything to my medical blog. So… why now? A few weeks ago a former colleague from the University of Michigan called on the phone and wondered how I was doing. Had not spoken to him since leaving UofM more than two decades ago… but he learned of my cancer diagnosis from somebody who knew somebody who knew me (6 Degrees of Separation?).

He poked around on the internet and found this blog, noted that there had been no blog entries since 2010, and assumed the worst.

Well, I’m writing to advise any readers that “the worst” has not happened. In fact, one of the reasons there have been no new postings to my blog is that nothing has happened. I am still on a “chemo light” regimen of Revlimid, which I take daily for three weeks out of every four. I still experience mild side effects from the drug but they are easily tolerated. I still get periodic medical check-ups and screenings to check for re-emergence of the disease. And, most important, my official diagnosis remains “near complete remission.”

In summary – life is good. Multiple Myeloma has no cure (at least not yet) but it has been subdued for over nine years. I attribute this success to the then-ground-breaking drugs and the clinical trial in which I was fortunate to participate.

Chemotherapy Update – Cycle 6 results

Sibs,

This Monday marked the end of Chemo Cycle 6, and the completion of the Chemotherapy Phase of my treatment for Multiple Myeloma. As usual, Irene and I met with the Myeloma physician and the research assistant to review my progress and also to discuss the hand-off from the Oncology Team (we’ll have a follow-up visit with Dr. J in 10 weeks) to the Bone Marrow Transplant Team.

These last 3 weeks have been very busy – at times chaotic – intensified by a short-notice, disruptive schedule that UofM inflicted upon us mid-Cycle. This took an emotional toll on me (and Irene) as I tried to accomplish all of the pre-admission procedures, prepare myself for Transplant hospitalization, and still work full-time for the Burton Group.

How disruptive was it? In addition to the usual twice-weekly chemo infusions, other procedures included a Bone Marrow Biopsy, spine surgery (“kyphoplasty”), a spine biopsy, a cholesterol screening, an ekg, an echocardiogram, a pulmonary function test, a PET scan, a slew of x-rays, an oral exam (the Transplant Team requires a “no disease of teeth or gums” statement from your regular dentist), and separate clinic consults with Oncology, Orthopedic, and Transplant physicians. MOST of the results from all those procedures were good news; but one result requires follow-up treatment.

THE GOOD NEWS

The best news is the Bone Marrow Biopsy, which measured zero% Myeloma cell concentration in my bone marrow and resulted in the “complete remission” statement by the Cancer research team (at diagnosis in April the concentration was 40%). Other good news is that the spine surgery at L3 went well and the hip/pelvis pain that it was intended to correct is reduced (not completely gone, but better). The biopsy of the lesion in that L3 vertebrae (performed at the time of the surgery) was negative for cancer. The other tests on my heart and lungs showed “normal results” – nothing to prevent me from proceeding with the October Transplant.

THE FOLLOW-UP TREATMENT

The PET scan was normal for everything that the Transplant Team would be worried about, however there was evidence of ..something… near the valve which separates the large and small intestines {i think}. “Minimally decreased FDG uptake in the region of the bilateral femora and tibia, which is most likely physiologic/reactive.” Dr. J explained that he doubts this is anything to worry about, but since colon cancer is the number one preventable killer today AND I am due for a colonoscopy anyway that we might as well go ahead and schedule a colonoscopy prior to Transplant (with special instructions to inspect the valve and the terminus of the small intestine… a little farther {aieee !} than where a standard colonoscopy goes). Hey, I wasn’t doing anything for the next week, anyway!

BONE MARROW TRANSPLANT

Being in “remission” does not equate to being “cured.” This disease is still in my body and the best treatment includes transplant(s) to further combat the disease and extend the remission interval (and thus extend life). My hospitalization date for the autologous (self) Bone Marrow Transplant has slipped from September 24th to “one day during the first week of October.” I’ll probably be in the hospital for 3 weeks and then spend 2 – 3 months recovering at home. We still have not decided upon that second transplant, BUT – in view of my excellent chemotherapy results – Dr. J suggested an alternative in our meeting yesterday: delay the second transplant indefinitely until some future date, probably associated with the inevitable recurrence of Myeloma as it progresses from remission to an active state. {I wonder if the Bone Marrow Transplant physician, Dr. K, will concur with the Oncology physician, Dr. J’s, alternative? Stay tuned, bone marrow candidate donors Micki and Laura…}

More statistics from Dr. J yesterday on the donor transplant success rates: 20% are totally cured of the disease (hooray!!); 15% die within one year (boo!!), 20-30% suffer severe graft vs host disease (ugh!), the remainder have the same success/remission interval as a much-lower-risk self-donated transplant. As I have said before: the decision for self- vs donor- stem cells for that second transplant will not be an easy one.

WHAT HAPPENS BETWEEN NOW AND OCTOBER FIRST?

Compared to the previous three weeks, the next three weeks look absolutely boring! The aforementioned colonoscopy is not scheduled yet, but must be performed prior to September 14th or wait until at least after January. On the 14th I begin the 5 day regimen of self-injected Neupogen (4 injections per day, 1200 mg total daily) to build white blood cell counts. Bulked-up on white cells, I then begin “apheresis” (cell harvesting, filtering good stuff from blood very much like a kidney dialysis machine) which will take from 1 – 4 days depending on the volume of each day’s harvest. That leaves me with about 8 days of “nothing to do” before hospitalization – time in which I _plan_ to finalize a number of Burton Group projects before going on a leave of absence, but _suspect_ that UofM will disrupt with things we don’t even know about yet.

That’s the latest news from Hamburg,

-larry

Sibs,

Well, folks, you can pretty much forget the nice, orderly, compact plan I described in my Chemo Update #5 for the Bone Marrow Transplant process to begin with a disability leave from Burton Group on September 17th. {sigh}

Thursday morning I got a call from an “appointment scheduler” from UofM, advising me that she had 9 appointments to schedule for me over the next _2_ weeks, beginning with an appointment TODAY. These 9 appointments did not include the regularly scheduled Tuesday/Friday chemo infusions, nor the new referral to an Orthopedic Surgeon regarding the hip/pelvis pain, nor the week of self-injected Nuepogen, nor the week of harvesting my stem cells. Obviously, this is a huge yank for a guy who is still working full time and trying to tell his employer when he is going to “go dark” on them, and a wife who is trying to keep her employer apprised of when she will begin a family medical leave.

Here’s the news since Wednesday’s official update – I cannot even gather them into good news/bad news categories:

– Have scheduled the 9 appointments into the next few weeks. Moderate disruption some weeks but the week of Labor Day and the week of 9/17 are pretty much wiped out (all out-patient stuff)

– Today’s last-minute-added appointments changed a “routine chemo day” into an all-day event at UofM. Irene and I were in the hospital from 8:00am to 4:00pm

– Had my Pulmonary Function Test (lung capacity and efficiency) today, passed with flying colors

– Met with the Orthopedic Surgeon today and decided to proceed with kyphoplasty surgery which will insert cement into my L3 vertebrae and prevent further collapse of my spine, and perhaps {educated guess} solve the hip/pelvis pain problem. Kyphoplasty to be accomplished within the next 3 weeks (another calendar disruption)

– Today’s chemo went well. I got the Neupogen injection they forgot on Tuesday.

– Today marks the end of 17 weeks of chemo. Only one chemo week left!!

– Learned that my Bone Marrow Transplant admission has slipped from 9/24 to 10/1

I am now dealing with 8 different medical departments for tests and procedures! I have an assigned BMT Coordinator – whom I had not heard from in 2 months – who is supposed to lead me through all this… but yesterday’s scheduler call should have been preceded with some education as to what’s happening and how soon. Do I sound a little frustrated?

Pollyanna has left the building!

-larry

Sibs,

Monday marked the end of Chemo Cycle 5 and Tuesday the beginning Cycle 6 – hopefully my last cycle before transplant. As usual, Irene and I met with the Myeloma physician and the research assistant to review my progress and discuss future treatment. Tuesday’s clinic visit turned out to be an all-day affair: Blood work for regular labs (with a defective barbed needle OUCH!), two urine samples, meet with researchers (who were already running late at 10:00am), supplemental blood draw for the research study, an ekg, regular chemo infusion, supplemental 2 hour Pomidrinate infusion for bone strengthening (has to go into the bloodstream slowly or it damages the liver), more take-at-home pills from the pharmacy, and an x-ray of my spine. Long, long day.

In general, previous trends are continuing: my treatment is going well, side effects are more evident with each cycle, and we now have a date for the Bone Marrow Transplant/Stem Cell Recovery.

LAB WORK, BLOOD COUNTS

On Tuesday my white cell counts and ANC levels had declined – and although still within normal limits, were below where Dr. J’s standing orders call for a Neupogen (white blood cell drug) boost. BUT – the infusion nurses did not catch that detail and we had a voice mail upon arriving home saying we needed another injection (didn’t they poke me enough today already?). Not sure where/when that will happen… I have Neupogen syringes in the refrigerator, maybe I can do it with a self-injection.

SIDE EFFECTS

After 5 chemo cycles, the side effects continue to become more noticeable and more difficult to ignore. The two most troublesome are the “numbness and tingling in the extremities” and the pain in my right hip/pelvis. Despite the gallant claim in my previous Chemo Update Email about avoiding any pain medication, those days are over and I now have a new pill to pop for the hand/feet pain. Lyrica, 50 mg, initially twice per day but already increased to 3 times, a neuropathy drug and not a narcotic, seems to be helping.

You may recall that in Chemo Update #3 I talked about pain in my right hip/pelvis, and that an x-ray and MRI were ordered to assist in isolating the problem. In Chemo Update #4 I reported that both tests were negative. So here in Chemo Update #5 I can report that Dr. J ordered _another_ MRI, this one of my spine with a contrast agent, and this test indicates that the lesion on my spine at L3 has increased slightly in size and that there seems to be some compression of the interstitial space between L3 and L4. Dr. J has referred me to a radiology spine specialist who may insert a needle, which carries a balloon, which he inflates with some form of “cement” to spread the distance between the two vertebrae. This spine-expanding procedure has been around for a long time, is well-established as a permanent solution… but it is done on an out-patient basis {egads!!}. Stay tuned…

(NOTE: despite my good response to chemotherapy in general, the increase in size of this L3 lesion suggests it is somehow chemo-resistant. Future treatment for this bad boy may involve radiation therapy)

BONE MARROW TRANSPLANT

All blood match results are in, and the final results contradict the preliminary results reported in Chemo Update #5. Two siblings (Laura and Micki) were perfect matches – 10 out of 10 indicators; and two (Dave and Mary) did not match. Keep in mind that this experimental study calls for a tandem transplant – the first is always autologous (self) and the second is either autologous or allogeneic (donor). We still have not decided upon that second autologous/allogeneic transplant, and will not until measuring success of the first autologous transplant. But, with two matching donors, we at least know we have that option.

We have a tentative transplant date of September 24th. Unlike a hotel where you have a guaranteed room, a BMT reservation is dependent on the previous patient getting discharged and the absence of another patient in critical condition whom the doctors decide must be slotted in ahead of you. No expedia.com guarantee at this place! 😉

– If we can hit that date I should be back home, immune-recovered, {probably still bald ;-( }, but able to freely mix with relatives by Christmas. That’s an important milestone for me.

– If we don’t hit that date I will have to endure another Chemo Cycle (#7) for no medical reason but waiting for bed availability. I will be sad…

The transplant process includes an intense week (bone marrow biopsy, ekg, 4 hour infusion with 12 hour observation, blood work, echocardiogram, pulmonary function test, more…) of pre-admission procedures and tests, all done on an outpatient basis but requiring lots of time. The actual transplant is 2 – 3 weeks of hospitalization in a sterile room, followed by 2 – 3 months of recovery involving initially 3 per week, then 2 per week, then once per week visits to the transplant clinic for checkups. I will very likely be out of work on disability during this entire time; Irene will apply for a family medical leave to be home with me until my recovery is well-along. This transplant is NOT something I look forward to; after hearing details of the pre-transplant week, it look forward to that even less.

(UNEXPECTED EDUCATION: When patients undergoing radiation and chemotherapy, you hear that it reduces and sometimes destroys [as in my case during transplant] the patient’s immune system. A destroyed immune system means you start over – from scratch!! – including long-ago childhood immunizations like polio, measles, mumps, chicken pox. Unfortunately, your immune system will not be strong enough to create the immunities (without giving you the disease) for a full year. The patient must be careful about exposure to those diseases (think: grandchildren) until inoculation a year after transplant. Weird, huh?)

That’s the latest news from Hamburg,

-larry

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

Sibs,

This week marks the end of Chemotherapy Cycle 2, and I am happy to report good progress with the chemo and only minor problems with side effects. My lab work from Tuesday came back with “normals” for all the key blood indicators, so there are no issues to prevent me from beginning Cycle 3 in next Tuesday’s scheduled rotation.

We were contacted by the Bone Marrow Transplant Team this week, and have a consult (“Meet and Greet”) visit with them on June 26th. By that date, I will have completed 3 Chemo Cycles and – assuming the results continue to be positive – we will tentatively schedule my hospitalization for the transplant. The clinician in the Myeloma Center thinks that I may undergo just one more Chemo Cycle (only 4 cycles instead of the expected 8!) and then go for transplant. August? This is much sooner than expected. No… I don’t know anything about the “self-harvested stem cells” versus “sibling donor stem cells” decision yet – but will let you know as soon as a there is anything to share.

In my last Update, I mentioned that my Myeloma probably became active 2 years ago – based on its spread through multiple bones and the number of hot spots indicated on the CT scans. Several people asked me if the medical community knows what causes Myeloma in the first place, and specifically what incident cause it to become active in me. We don’t know the answer to either of those questions… but the Associated Press ran a news story last Friday “Rare Cancer Found in WTC Workers” describing an outbreak of Multiple Myeloma in the rescue and construction workers involved in the World Trade Center 9/11 disaster. If you Google that title, you will find related news articles about these young Myeloma patients. Perhaps this affected population will aid researchers in finding the root cause of this disease?

That’s all from here, much shorter Update than 3 weeks ago. We’ll keep you posted on any new developments.

-larry

Sibs,

LOTS of news from Tuesday’s chemotherapy session, which included results and education from the research team. I’ll summarize in this first paragraph to avoid keeping you in too much suspense as you endure what is a LONG message: Both good news and bad news. The good news is strategic, long-term stuff; the bad news is (mostly) short term tactical stuff. The net result is it was a VERY GOOD DAY… well except for the two extra injections, added respiratory therapy inhalation routine, the infusion itself, and the resumption of all these drugs in Cycle 2 of chemotherapy. 😉

I’ll divide this into some digestible chunks… yesterday Irene (she went with me, thankfully) and I were clearly into information overload by the end of the visit. You will be too by the end of this message.

BONE MARROW BIOPSY ANALYSIS:

Most people have a plasma concentration of 5% or less in their bones, because healthy bones make good plasma, the amount you need, and pass good plasma into your blood stream. My bone marrow has a 40% plasma concentration, because the Myeloma is creating defective plasma that cannot pass to my bloodstream. Untreated, the cancer increases this percentage until the bones become “full”, the bones themselves become brittle and very easily broken, many lesions occur as the defective plasma tries to “get out” of the bone, the bloodstream stops receiving good plasma. The researchers are not surprised at this 40% number and say I should not be alarmed. Many myeloma sufferers are at 90%. This number will decline with successful treatment, and will drop and climb between remission and flare-up for the rest of my life.

WHITE and RED BLOOD COUNTS DECLINE:

My white and red blood cell counts dropped from previous weeks – not surprising because this is an anticipated (though unwelcome) side effect of chemotherapy. My white cells have fallen very low – from 2.6 (normal) to 1.6 to .6. At .5 they discontinue chemotherapy.. .so I was very close to cut-off. To combat this I received two injections of blood cell stimulating drugs (I think the same stuff Janet self injects, but probably in massive doses). The researchers tell us this is to be expected and is no cause for immediate alarm unless a downward spiral continues and the countermeasures are ineffective (which they do not anticipate will be the case). HOWEVER, at this deeply immune-suppressed state I am “grounded”. No visiting the grandkids this weekend, no crowds, no mixing with people with any kind of infections, no public activities like movies, restaurants, air travel. I have masks to wear for any brief public trips in which I encounter “the great unwashed”.

LIVER COUNTS DOUBLED:

The opposite of blood cell counts, my liver counts have climbed to double my previous numbers. This is also to be expected and is a result of the liver on overload processing all the unnatural fluids coursing through my body. They’re watching this, not alarmed, these are temporary liver problems and not permanent liver damage.

DNA SEQUENCE ANALYSIS, NO DEFECTS:

Two characteristics of Myeloma sufferers is that they carry genetic traits that inhibit disease recovery. These defects add to the required number of chemotherapy cycles (remember I only just started Cycle 2) and shorten the time between remission and re-occurrence of the disease (some have remission intervals of only a few months, whereas sufferers without these DNA defects can have remission intervals of a year of more). Those two genetic traits are: lacking the DNA string normally found at DNA sequence 13 (it’s just not there!); and a reversal of the strings at DNA sequence 4 and 14 ( what should be at 4 is at 14, and vice versa). I have NEITHER of these deficiencies – a very good bit of news. Keep in mind – this is not a predictor of one’s susceptibility for GETTING the disease in the first place (which they say probably began with an event in me 2 years ago) but your ability to fight and overcome the disease once you have it. Since there is absolutely nothing they can do to correct DNA defects like this, not having them is a huge bonus. Thank you, mom and dad!

DRUG REGIMINE CHANGES:

Two changes in drugs based on early results and side effects.

First, to avoid the rash (my torso looked like a cherry tomato) I encountered last week – which they have declared to be an allergic reaction – we have dropped the thrice-a-week Bactrim pills and replaced them with a monthly, 8 minute long, respiratory therapy prescription inhalation. This will be scheduled into my regular clinic infusion visits for the next 12 months. This is the anti pneumonia component of side effect prevention.

Second, my daily self-administered pokeymon injection of Lovenox (LOVEnox, a sex drug? NOT!) has been replaced by a daily dose of good-old, regular 81 mg aspirin pills. I will not miss pokeymon. This is the anti blood clot component of side effect prevention.

All other chemo drugs and chemo-cancelling side effect drugs are the same dose and frequency.

PROTEIN COUNT IMPROVEMENTS:

In a phone call from the clinic today with lab updates, I learned that my IGG Protein counts (do not ask for more specifics than that) have improved dramatically with only the first cycle of chemotherapy. Normal people have IGG protein levels less than 1500 (lower is better with IGG); my initial counts were over 7000; my latest count is down to just under 2000. This is also a very good bit of news.

CHANGE TO PROJECTED GRADUATION FROM CHEMOTHERAPY to BONE MARROW TRANSPLANT/STEM CELL RECOVERY:

More from the update phone call from the clinic today… If you have been paying attention, you may recall that the experimental study’s calendar projects 8 chemotherapy cycles of three weeks each = 24 total weeks, with expected October/November for transplant (IF transplant happens, more on this later). Today, based on early strong results, they slashed my chemo time from 8 cycles to 4-6 cycles (from 24 weeks to as few as 12 weeks to 18 weeks). This is still tentative, but they have already referred me to the Transplant Clinic (separate from the Oncology Clinic – whole new group of people) who should call within the next day or two to schedule our preliminary consult and get me on their busy calendar for the transplant/recovery process. This could happen as early as late July, probably August/September. Expect a 10 -12 day hospital stay.This is a huge deal!

MAJOR DIFFICULT DECISION – SELF-HARVESTED BONE MARROW OR DONATED BONE MARROW?

Finally (after all the other info overload) the researcher left as with “something to start thinking about”.

Initially, we must make a decision to undergo transplant/recovery or not. To decide NOT, my chemo results would have to be so wildly successful and place me so far into remission that transplant/recovery would offer no additional medical benefit. This could happen; it is unlikely.

Second, after deciding to undergo transplant/recovery, from whom do I get it? This is NOT an easy one.

– Self-harvested cells guarantee no rejection problems and no chances of acquiring new diseases or deficiencies. The biggest downside – the only thing it does guarantee is placing me into remission. No chance of that tantalizing word “cure”.

– Donated cells offer a slim, remote chance of that word “cure” – but very slim and very remote. A crap shoot. What the risk carries with it is a lifetime of anti-rejection drugs and the possibilities of other side effects, and the list of those side effects [diseases] is very long and very spooky. If the crap shoot fails, I can be no further ahead than in simple self-harvested remission, and for listed reasons, probably a long way behind.

I may have explained this in a way that sounds like a slam-dunk decision. It is not. We will receive input from the transplant team (whose business it is to do transplants) and the Myeloma Clinic Oncology team (whose business it is to cure cancers). As a final “more food for thought”, the researcher reminded us that this field of medicine is changing almost daily, and the latest research suggests doing BOTH, a self -harvested first followed by a donated transplant/recovery. [best of both worlds of worst of both?] This will obviously be a wait-to-the-last-minute decision.

= = = =
Sorry for the length. I did not know another way to give you all the info without conveying this much detail. In general, we are very encouraged by all that has transpired and doing a Happy Dance in Hamburg. I am still feeling very good through the chemotherapy, minimal side effects, none of the “bad” side effects, and optimistic of an early, positive outcome.

-larry

My medical journey began in late Summer of 2006 when I experienced an excruciating “back spasm” that my primary care physician treated with steroids and anti-inflammatory drugs. The problem went away.

When a second, similar spasm occurred in the Fall my doctor resumed the drugs and ordered 6 weeks of physical therapy. The problem went away.

When a third spasm occurred in January of 2007 my doctor ordered a bunch of x-rays and a spinal MRI. The x-rays were all normal; the MRI results were inconclusive. My physician ordered a CT scan and a repeat of the MRI with contrast agents, and this MRI showed …something… on my spine at the L-3 vertebrae. At this point, I was referred to specialists at the University of Michigan. Here is a note I sent to my siblings on March 22, 2007:

“Sibs,

 Well, although my back is feeling much better than it did a few weeks ago, the results of my recent medical tests are not good news. There is a mass in my back between the 3rd and 4th vertebrae, and it’s going to require a biopsy to determine whether this thing is benign or not. Frankly I was not prepared for this result and didn’t ask any of the right questions… am planning a follow-up call to get more answers.

My doc tells me that this is not surgery but a radiographic procedure – they insert a needle in my back and use an imaging system to steer the needle to the growth. She has referred me to a UofM orthopedic surgeon who specializes in bone cancer, and I’ll certainly know a whole lot more about this when it’s done than I do right now. My only request thus far is that this procedure include enough drugs so that I can be in the next county while they’re doing this to my back.

More later,

-larry”

During the next week, we were on an emotional roller coaster while waiting for a conclusive diagnosis. Here’s an email sent to my siblings on March 30th:

“Sibs,

As you know we had been waiting for the results of Wednesday’s x-rays and cancer blood screening before proceeding with next week’s spine biopsy.

At 10:30am the call came from the Radiology Dept to schedule the spine biopsy for next Thursday afternoon. Good; a game plan; we’re pointed in a direction; let’s get moving.

Thirty minutes later, we received a phone call from the Ortho Surgeon’s office, advising us that the just-arrived blood work revealed abnormal SPEP and UPEP levels, an indication of a blood-related cancer called a “Myeloma”. We’re not sure yet, this is just conjecture, but there is no reason to proceed with the spine biopsy and that appointment is now cancelled.

Twenty minutes later the oncology hematologist’s office called and scheduled an appointment for additional blood work, a face-to-face meeting with the blood specialist MD, and a bone marrow biopsy. That appointment is scheduled for Monday afternoon, 2 April.

So, that’s what we know. The results of Monday’s tests should begin to narrow the scope.

Lots of unanswered questions: What about the full-body x-rays… what do those suggest? Is there no relationship whatsoever between the muscle spasms of my back, my recent bladder/prostate surgery, and the discovery of this blood problem? Did I just get lucky and find this real early because of an MRI?

“

In that meeting with Dr. Jakubowiak on Monday April 2nd I learned that I had a form of cancer called Myeloma, that it was detected in 3 bones in my body and thus would be labeled Multiple Myeloma, and that it had already progressed to Stage 3. Here’s the April 5 note to my siblings:

“Sibs,

The doctor’s appt this morning went as expected — the initial diagnosis of Myeloma was confirmed. We selected a treatment protocol that places me into an experimental cancer study using a new mixture of drugs with lower side effects and high probability of success. Phase I of the chemotherapy treatments may begin as early as next week, and will continue for 3-4 months. Phase II of the treatments will involve bone marrow transplants. Phase III is the control or management phase of the disease and can continue indefinitely. Despite the fact that we {thought we} were prepared for this news, we are in a moderate state of shock, still trying to digest all of the information and details, and just beginning to grasp the changes that will have to be made in our everyday lives.

Thanks for all of your concern and support. As I enter into Phase I, I don’t think there is anything else we need. Phase II may require bone marrow donations, and those can only come from my siblings. The good news is that these “bone marrow donations” are NOT the torture they used to be — all they take from you is blood [like giving blood at a blood drive]… stay tuned for more info.

The very-next step is a phone call from the Oncology Hematology announcing my acceptance into the clinical trail. We expect that call today or tomorrow. Once that is confirmed we begin setting dates and getting details from our next series of questions.

-larry”