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.

Chemo maintenance – end of cycle 54

June 5^th, 2011 marked the end of my 54th cycle of post-transplant chemotherapy. I have not been very diligent in updating my blog for these past 6 months, but there has not been much to talk about. Prognosis remains good – still in NCR, Near Complete Remission.

UofM posted a short summary of successes in its recent treatment of Multiple Myeloma, using the regimen developed in the clinical trial in which I participated. You can read about it here:

http://www2.med.umich.edu/prmc/media/newsroom/details.cfm?ID=1852

IMMUNE SYSTEM PROBLEMS

My immune system continues to be unpredictable. Sometimes the lab reports are in normal range. Other times my immune system indicators are very low – which will prompt a call from the clinic advising me to be very careful in interacting with anyone who may not be real healthy.

One of those tests showed my immune system to be extremely weak and the blood test interval was shortened to weekly while we waited to see if my body could auto-recover without medical intervention – which it did.

Recently I went to a conference and picked up a nasty bug from somewhere. Ended up down at the UofM’s ER with a temp of 101 and a diagnosis of pneumonia/bronchitis. The doc gave me a prescription for antibiotics and within a week I was well on my way to recovery. Other than that episode, and one bad cold, I have been feeling pretty good these past 6 months.

NEWS FROM MY CLINIC VISIT

Not much to report from this clinic visit. Dr. J was not there, and we met with his PA, Tara. Blood counts are good. Previous Bence-Jones urine analysis shows trace amounts of the disease in my system, but those counts are essentially unchanged for the past year.

SIDE EFFECTS

I have had two follow-up tests during these six months to assess changes in my condition that may be the result of Multiple Myeloma or the drugs being used to treat it.

The first was a hearing test. Over a year ago I had reported substantial hearing loss in my right ear. Because hearing loss is one of the reported side effects of my chemotherapy drug {although it is important to note that Revlimid-related hearing loss is almost always observed bi-laterally – both ears – rather than just loss in one ear}, Dr J ordered a follow-up exam to see if there were any chance on my hearing. No change. Good news.

The second test was an x-ray bone scan, analyzing the density of my bones to compare to an earlier scan two years ago. We know my skeletal structure is not as strong as it should be, but is it getting worse or staying the same? Again, good news. No change.

Other than that, the old side effects are still evident, and still tolerable. I tire easily. Still take my power naps regularly (maybe 1 of every 2 days); neuropathy in my feet still bothering me a little; still highly sensitive to heat and direct sunlight.

NEXT STEPS

Without any evidence suggesting any changes in my condition, Dr. J has again extended the interval for blood work to every 90 days (it had been shortened to monthly last year). My next clinic visit with Dr. J will be in early September. Check back with my blog then…

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 43

September 29, 2010 marked the end of my 43rd cycle of post-transplant chemotherapy. Yes – I know I am writing this update on November 14^th and the clinic visit was way back in September. But frankly there are no changes to my medical status these days… and that’s a good thing. Still very good news – the cancer remains in “complete remission.”

IMMUNE SYSTEM PROBLEMS

My immune system continues to be in lousy shape. We visited Europe this summer and I enjoyed two weeks in Belgium, France, Switzerland, and Austria – all without any undo fatigue, side effects, or germs. Life was good… until the flight home. We were stranded on the runway in Atlanta during a flight change – three hours, in the sun, engines off to save fuel, hot cramped cabin. A virtual breeding ground for airborn illness. For the next 3 weeks I was one sick guy, ran a temperature that sent me to UofM’s Emergency Room, lost a few pounds (that’s the good part). Ugh!

Other than that episode I have been a healthy guy this cycle.

NEWS FROM MY CLINIC VISIT

Perhaps there is a medical breakthrough to report in this update, or maybe this news is better described as a change in medical posture.

Multiple Myeloma has always been classified as an incurable disease, which is how it was described to us upon initial diagnosis in March of 2007. However, lots has changed in three+ years, due in part to successful clinical trials such as the one in which I participated. The early results of those experiments, and the extended longevity of patients using new drug regimens, have the medical experts replacing that adjective incurable  with chronic.

This is more than just semantics. It represents a substantial shift in thinking about treatment and prognosis for Multiple Myeloma patients. Contrast a chronic condition diagnosis to the perception of Multiple Myeloma as a death sentence mentioned in the National Public Radio article in January 2009 ( http://www.npr.org/templates/story/story.php?storyId=99970093 ). Yes, Indeed – I will settle for my chronic condition any day!

SIDE EFFECTS

No news here. All the regular stuff, not difficult to tolerate: still taking my power naps regularly (maybe 1 of every 2 days); neuropathy in my feet still bothering me a little; still highly sensitive to heat and direct sunlight.

NEXT STEPS

 I’ll have monthly lab work and continue on my new regimen until my next clinical visit with Dr. J in late December. Check back with my blog then…

 That’s the latest news from Hamburg.

 -larry

Chemo maintenance – end of cycle 40

July 7, 2010 marked the end of my 40th cycle of post-transplant chemotherapy. Irene and I visited the UofM Cancer clinic this morning for the usual lab work, 24 hour urine specimen, and a visit with Dr. Jakubowiak. Still very good news – the cancer remains in “complete remission.”

IMMUNE SYSTEM PROBLEMS

My immune system continues to be in lousy shape. During my previous maintenance cycle I suffered a few really bad colds; this cycle it was a bad case of diarrhea. After suffering for four days with no improvement we called the clinic and got the docs involved – and they prescribed some drugs that solved the problem. Not sure where I picked up that bug but it sure nailed me

NEWS FROM MY CLINIC VISIT

These immune system issues are a known side effect of the Revlimind chemotherapy drug that I’m taking. Aside from my primary medical problem – keeping the Multiple Myeloma in check – Dr. J’s biggest concern is avoiding any cuts, injuries, or exposure to germs that would cause me to become ill due to a compromised immune system. He’s decided to monitor my immune system a little more closely by increasing lab work (blood tests) to monthly – on the same day as when I pick up my monthly batch of Revlimid from the UofM pharmacy.

SIDE EFFECTS

The month-long vacation from Revlimid (discussed in my previous blog posting) was very nice. If there were ever any uncertainty whether Revlimid causes the neuropathy in my feet – this experiment proved it. The pain/discomfort completely disappeared for those 4 weeks. Today, just one chemo cycle into my new regimen of 5mg pills for 3 out of every 4 weeks… the neuropathy is back.

NEWS ABOUT THE CLINICAL TRIAL

If you’ve been following my blog for a while you know that my cancer treatment was part of a clinical trial of new drugs with new dosing levels. The results have now been published and you can read about it: http://abstract.asco.org/AbstView_74_52410.html

I told the folks at the UofM clinic that I copied/pasted the text into Babblefish, hoping to get an English translation! 😉

The disappointing/disturbing/unsettling news is that final line of the abstract (I italicized & bolded the key phrase). “Conclusions: Len-Bz-dex demonstrates favorable tolerability and is highly effective in newly diagnosed MM, with no impact seen from adverse cytogenetics on response or PFS, and similar outcomes with or without ASCT.” Translated this says that the RVD chemo cocktail I experienced was highly effective (hooray!), BUT there seems to be no remission difference between those patients who endured a Bone Marrow Transplant and those who did not. <arghhh!!!> Dr. J is very interested in seeing whether that distinction holds true 4, 5, 10 years post-transplant.

NEXT STEPS

I’ll have monthly lab work and continue on my new regimen until my next clinical visit with Dr. J in late September. Check back with my blog then…

That’s the latest news from Hamburg.

-larry

April 14^th marked the end of my 39th cycle of post-transplant chemotherapy. As usual I donated several vials of blood and a gallon jug of urine (24 hour urine collection) to the UofM Cancer Clinic, then met with Dr. Jakubowiak and his new MD fellow Dr. McDonald to assess my progress. The good news – the cancer remains in “complete remission.”

My Adhesive Capsulitis (shoulder pain – aka “frozen shoulder”) is now at a steady state. If I visit the gym and exercise regularly the shoulders stay lose and the pain is minimal. If I avoid the gym they hurt. I know how to manage this problem.

My transition from private medical insurance to Medicare seems to have gone without a hitch. There have been no big coverage or co-pay surprises. Yet. Amazing…

SOME EDUCATION ABOUT MEASURING CANCER REMISSION

Each clinic visit includes blood work and submission of a 24 hour urine sample. From those the staff measure immune system function and activity of the Myeloma. The important immune system indicators are the blood’s ANC (neutrifil) and WBC (white blood cell) counts. The cancer indicator measured in the urine is called a Bence Jones test {news to me! google Bence Jones – interesting material}. Fortunately my Bence Jones results are listed as “trace amounts, too little to quantify.” As long as that number stays low, things are good; when that number climbs… well, things will not be so good.

IMMUNE SYSTEM PROBLEMS

Speaking of ANC and WBC indicators… my immune system is in lousy shape. I’ve suffered a few really bad colds since my last blog report, and the intervening lab work has shown that my counts are lower than they’ve ever been. Despite poking myself with prescribed Neupogen injections, my immune system has not responded well.

NEWS FROM MY CLINIC VISIT

The immune system issues mentioned in the previous paragraph are not unexpected – in fact they are the known side effect of the Revlimind chemotherapy drug that I have been taking for three years. Dr. J decided to give me a month’s “vacation” from Revlimid, and thereafter to change my dosage and regimen. So in the next 30 days we hope that my body will have a chance to resume normal operation, after which my dosage will change from a daily 10mg pill taken for 2 out of 3 weeks, to a daily 5mg pill taken for 3 out of every 4 weeks.

SIDE EFFECTS

Neuropathy – Nothing new. Although hardly noticeable most days, I am anxious to see if my symptoms change when I don’t receive Revlimid for 30 days.

Neutropenia – My immune system blood counts have trended lower and become less predictable, per previous paragraphs about my month’s vacation from Revlimid. Stay tuned…

NEXT STEPS

I’ll have lab work and resume the Revlimid on May 10^th. Very interested to see what changes.

In the mean time, knowing the germ fighting capability of my immune system is at all-time lows, I must be ever-diligent about handwashing and avoiding people with germs. Purell is my constant friend.

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 35

January 20^th marked the end of my 35th cycle of post-transplant chemotherapy. I donated 5 vials of blood and a gallon jug of urine (24 hour urine collection) to the UofM Cancer Clinic, then met with Dr. Jakubowiak to assess my progress. All good news – the cancer remains in “complete remission.”

Yet another follow-up on my Adhesive Capsulitis (shoulder pain – aka “frozen shoulder”). You may recall that after a couple of months of Physical Therapy, my shoulders got better. Then I reached my maximum annual insurance payout for PT and discontinued PT. Guess what? My shoulders began to regress. Well, “if you can’t beat ‘em, join ‘em” – and we did. Irene and I joined the gym associated with the PT facility and I have been exercising 3 times per week. Same place, same equipment, same exercise routines. Seems to be working because my shoulders are improving and are already a little better than they were even at the end of PT.

Some medical insurance news: on March 1^st I become eligible for Medicare – due to the fact that I will have been considered “disabled” under the Social Security guidelines for 24 months. This means that my COBRA medical benefits from Burton Group expire and I will fall into the federal bureaucratic morass of Medicare Part A, B, C, and D, with associated Medicare Supplemental plans, and Medi-Gap insurance policies. Makes my brain hurt just thinking about it. Do you even know what the acronym COBRA stands for? Consolidated Omnibus Budget Reconciliation Act. Now there’s a capitol hill mouthful for ya’!

NEWS FROM MY CLINIC VISIT

This was another boring clinic visit – no changes from the previous time.

More details about the experimental drug program in which I participated. Although I reported earlier that 3 of the participants have already emerged from remission, I learned Wednesday that those three went directly from chemotherapy to maintenance – no intervening Bone Marrow Transplant due to issues of age, strength, or complicating medical histories. All patients who had endured the transplant remain in remission. The Myeloma community now regards this study as a landmark event that has defined the new standard protocol for treatment of Myeloma. Talk about being in the right place at the right time!

MEDICATION CHANGES

No changes. Dr. J briefly considered changing my Revlimid dosing regimen but – hey, if it’s working, let’s not try to fix it.

SIDE EFFECTS

Neuropathy – Nothing new. The Revlimid chemo drug (taken in pill form) causes some pain and tingling in my feet. But the pain has either subsided  or I’ve grown very used to it. Hardly noticeable these days.

Neutropenia – No news here. My immune system blood counts are inconsistent and unpredictable. Two sequential sets of lab work caused a small panic down in the cancer clinic – November’s numbers were 2.8 (well within the normal range for a human) followed by a December reading of 1.2 (dangerously low). However, a follow-up lab test ten days later showed my immune system recovering nicely at 2.6. We’re not sure what’s causing these wide swings but are encouraged that my body reacts and recovers without any medical intervention.

NEXT STEPS

Se don’t meet with Cancer Clinic staff again until mid-April, so my next blog posting won’t be until then.

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 31

September 16^th marked the end of my 31^st cycle of post-transplant chemotherapy. Had blood work and visited the UofM Cancer Clinic to meet with Dr. Jakubowiak and assess my progress. Things continue to go well, with all indications that the cancer remains in “complete remission”.

No big medical news since my last posting except a follow-up on my shoulder pain. Turns out that I have Adhesive Capsulitis (aka “frozen shoulder”) – more common in post menopausal woman but also seen in chemotherapy patients. Although there are some interventions for severe cases (cortizone injections, surgery), most sports medicine docs advise you to “wait it out” – problem will go away in 12 – 18 months. So, that’s what we’re doing.

NEWS FROM MY CLINIC VISIT

This was another boring clinic visit – no changes from the previous time. My ANC counts (immune system indicator) are still below normal, but not dangerously so – they’re normal for me.

I asked Dr. J about the results of the experimental drug program in which I participated. They have not published anything yet, but an abstract has been written and submitted for publication. He thinks something may appear in a leading cancer journal as early as this December. Dr. J could not reveal any of those specific details, but shared a few things with us: 65 total subjects, 3 have had a recurrence of the disease, the rest remain in remission; many patients did not proceed with a Bone Marrow Transplant (most at UofM did, including me). Although researchers are anxious to publish results of this RVD (the chemo cocktail that I had) study, the real significant factor is the long-term survivability of the subjects. He expects those results to surface in about 5 years, and is curious about survivability statistics of Transplant vs non-Transplant patients. Me, too!

MEDICATION CHANGES

No medication changes, but with the stable blood results we’re seeing, Dr. J has extended my blood work from every 3 weeks to every 6 weeks. One fewer set of needles. Yippee!

Received a flu shot today – the regular kind of flu.

On October 6th I return to the clinic for my final set of childhood vaccinations. I’ll be glad to get those over with (5 injections at one sitting – ugh! Plus an H1N1 shot {if it’s available by then}). At that point, my immune system is supposed to be “back to normal” – or as normal as it’s going to get.

SIDE EFFECTS

Neuropathy – The same – reduced Revlimid dosage has made my feet feel better. Hardly noticeable these days.

Neutropenia – No news here. This “new me” seems stable enough to reduce the inspections (blood work) to bi-cycle (every-other revlimid chemo cycle).

NEXT STEPS

We don’t meet with Cancer Clinic staff again until December, so my next blog posting won’t be until then.

Between now and then, my new immune system will have had its second birthday. Can you believe it? – been two years already since my Bone Marrow Transplant.

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 27

June 23^rd marked the end of my 27^th cycle of post-transplant chemotherapy.

Had blood work and visited the UofM Cancer Clinic to meet with Dr. Jakubowiak’s staff (he was on vacation) and assess my progress. Things continue to go well, with all indications that the cancer remains in “complete remission”.

The biggest event since my last blog posting was our trip to South Korea to visit son Larry. We had a great trip – my health issues only posed a small problem: some discomfort with heat and direct sunlight on a couple of hot days, and shoulder pain again – no lifting luggage, difficulty opening/closing car doors, other stuff {pain has subsided since I started PT}. Despite 30 hours in airplanes neither Irene nor I suffered from any of the common “travel bugs” that regularly affect frequent flyers.

NEWS FROM MY CLINIC VISIT

This was a relatively boring clinical visit – no changes and the only follow-up was the status of the shoulder pain that I reported in my last update.

I had a slew of shoulder x-rays and a pair of MRI’s, followed by a referral visit to an orthopedic doc at UofM. Dr. Graziano suspects either arthritic joints or tendonitis, and prescribed Physical Therapy as the first response. After PT we’ll assess my progress and determine the next course of action. I’ve been in PT twice-a-week since then. The condition has improved, but has not gone away completely. I have a follow-up ortho appointment scheduled in July. Stay tuned for more in my next update.

MEDICATION CHANGES

I’ve now finished four cycles with the reduced dose (10 mg) of my Revlimid chemotherapy drug.

SIDE EFFECTS

Neuropathy – The reduction in Revlimid dosage has made my feet feel a little better. Hardly noticeable these days.

Neutropenia – No news here. My WBC and ANC counts continue to vary from blood-test to blood-test, low – but not dangerously so; however my immune system numbers never manage to climb into the “normal” range. The clinic staff advised me to simply accept this condition as the “new me”, and to continue taking precautions related to infectious diseases and germs.

NEXT STEPS

A few more weeks of Physical Therapy, then a follow-up orthopedic visit. Other than than, it’s just “Chemo Light” – daily pills and a monthly blood test.

We don’t meet with Cancer Clinic staff again until September, so my next blog posting won’t be until then.

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 23

Had blood work today and visited the UofM Cancer Clinic to meet with Dr. Jakubowiak and assess my progress. Things continue to go well, with all indications that the cancer remains in “complete remission” – very good news and a trend that I hope continues for many years.

NEWS FROM MY CLINIC VISIT

At the end of cycle 23 we met with Dr. J alone – due to a collection of circumstances all of his PAs and medical assistants were out of the office. There were no surprises in my lab work, but I did have an ailment to complain about: loss of “range of motion” in both shoulders, particularly my right shoulder, which is quite painful when lifting medium-heavy objects (like a gallon of milk), or when performing familiar tasks (like putting on a coat). Ouch!!

Dr J does not think the shoulder problem is related to Myeloma, but perhaps to other inherited age-related {AGE RELATED?  I ain’t old enough to have “age related” ;-} ailments like the bursitis that my mother experienced. He ordered a slew of x-rays and a pair of MRI’s. Stay tuned for results in my next update.

Dr J also reviewed the results from my recent bone density test, which reveals some osteopenia (bone loss/weakness) in my pelvis, spine and neck. Nothing critical, nor unexpected. This is what Myeloma is all about. We’ll get another test next year and compare.

MEDICATION CHANGES

In view of the “complete remission”, we’ve once again reduced my Revlimid chemotherapy dose – from 15 mg to 10 mg for 14 days of a 21 day cycle. For my bone density problem, he recommended an over-the-counter drug with vitamin D and calcium: Oscal – 500 mg twice a day.

SIDE EFFECTS

Neuropathy – No change from my previous report. However, the reduction in Revlimid dosage may make my feet feel a little better. Sure hope so, I have a l-o-n-g plane ride in my future.

Neutropenia – No big news here. My WBC and ANC counts (see previous update) continue to vary greatly from blood-test to blood-test, but my body seems to be able to recover by itself.

NEXT STEPS

Dr J wants to see what’s happening with my shoulders before we leave for South Korea (vacation/visit with son who is in the Army). So today’s x-rays, and two MRIs, will be the most medical excitement during this next cycle. Other than than, it’s just daily pills and a monthly blood test.

We don’t meet with medical staff again until late June, so my next blog posting won’t be until then.

That’s the latest news from Hamburg.

-larry

March 22^nd 2009 is the second anniversary of my cancer diagnosis. Incredible to look back and review all of this experience, consider how our lives have changed, and to recognize everything that has stayed pretty-much the same.

In general, things are going quite well and I am feeling pretty good. I’ve gotten to the point where I’ve accepted my physical limitations and know how hard I can push myself and when I just need to sit back and say “no, I cannot do that.”

MULTIPLE MYELOMA STORY ON NATIONAL PUBLIC RADIO

In January NPR ran a short segment on Multiple Myeloma. You can read it or listen to it at:

http://www.npr.org:80/templates/story/story.php?storyId=99970093

Be sure to read all of the  comments from patients and patients’ families – those are as interesting and informative as the article itself.

This information parallels the very latest info that the folks at UofM are telling us. Two years ago everybody was getting Bone Marrow Transplants; today new patients are less likely. (although many still do – must be related to the stage of their disease. _I_ for one sure wished I’d avoided the BMT) Two years ago the UofM folks predicted a 5 year median survival rate; now they are saying “many years.”

The article mentions thalidomide as the drug-of-choice in fighting this disease. My chemo drug, Revlimid, is a thalidomide derivative.

NEWS FROM MY CLINIC VISIT

At the end of cycle 19 we met with Dr. J and Christine (Tara took time off to get married) to review my labs and discuss any necessary changes in treatment. There were no surprises in my lab work, and I really didn’t have any ailments to report to Dr J. He talked to me about two things:

First, after this length of time Revlimid starts affecting a patient’s digestive system and they experience “loose bowels” and/or constant diarrhea. When that happens he told me that they can prescribe pills to counteract it. Fortunately there has been no evidence of that problem yet.

Second, I’ll get only one more infusion, in March, of the bone-strengthener Pentamidine. I have been on that medication for 18 months and that is the maximum recommended period before the drug starts damaging other organs – particularly the liver and kidneys. He ordered a Bone Densitometry scan (a fancy x-ray) which will set a baseline so that we can monitor how much and how fast my bones deteriorate without that drug. I’m not really sure what we do when that happens – guess we cross that bridge when we get to it.

MEDICATION CHANGES

Aside from the previously-mentioned discontinuance of Pentamidine, my drug list is unchanged. I only pop 5 pills a day.

I received my second round of immunizations against all the regular childhood diseases. I have one more batch to go, late this year, before I am fully immunized.

SIDE EFFECTS

Neuropathy – No change from my previous report. This at a stable state – no better, no worse. Some individual days are better than others depending on where I am in the 3 week chemo cycle, but it’s been so long since my feet felt “normal” that my brain just ignores my feet most of the time.

Neutropenia – My chemo drug Revlimid reduces WBC (White Blood Cell) and ANC (Neutrofill) counts, key indicators of the strength of my immune system. Normal ANC counts range from 2 to 7 million cells. Last summer when my counts dropped below 2 I’d be instructed to go the refrigerator and give myself an injection of Neupogen. This January when my count dropped below 2 they shortened the time between lab work to watch me more closely and see if my body would correct itself. Over a three week period things got kind of spooky: 2.1, 1.7, 1.4, 1.1… But then ANC started climbing without medical intervention: 1.4, 1.7… not back to normal yet but getting close. We don’t know what happened to me that the numbers fell so low, but we are pleased that I was able to recover by myself. [Of course, with my ANC count at 1.1, advice from the medical staff was that I needed to be extremely careful when out in public places or visiting anyone.]

NEXT STEPS

Things are going to be downright boring the next few months: daily pills, monthly blood tests, one final Pentamidine infusion, quarterly visits with the medical staff.

Unless something goes wrong, my next blog posting won’t be until May.

That’s the latest news from Hamburg.

-larry