Larry’s Medical blog

Chemo maintenance – end of cycle 15

October 4^th was the first anniversary of my Bone Marrow Transplant, a significant medical milestone. Although it seems like forever ago, I recall Dr. Khaled (my Transplant physician) telling us that I would not feel “like my old self” for one year. At the time, I was devastated – a whole year to recover from this thing? Fortunately, I was able to rebound a little quicker than his prediction – I was feeling much improved after 6 months, and approached feeling “like my old self” at 9 months. Not that everything is back to the way it was… some changes are permanent and there’s nothing I can do about those: tire easily, take power naps every day or two, sweat easily from mild physical exertion, overheat quickly in direct sunlight or on days when the temp exceeds 80.

In general, however, I am feeling good and think that I have settled into a consistent pattern with regards to my health.

NEWS FROM MY CLINIC VISIT

Next week will mark the end of the 15^th 3 week cycle of chemo maintenance since my Transplant. Yesterday Irene and I met with Dr. J and Tara, the Oncology PA to discuss my progress. There were no surprises in my lab work, but I complained about the weekly blood tests. I have developed scar tissue from all the needle work in the veins at my elbows. For the past few weeks the lab techs have drawn blood from the back of my hands rather than from my arms. At this point, because we think we understand how my WBC and ANC counts react to the Neupogen injections (see previous post for details), Dr. J extended the blood work from weekly back to monthly intervals. I am thankful for that change.

This first birthday of my new immune system also marks the point at which I begin getting re-vaccinated for all those childhood diseases. I was aware that my clinic visit yesterday would include vaccinations, but I guess I had not imagined getting 5 inoculations on the same day. OUCH! Two in the left arm; three in the right. I am sore. Tetanus and Diphtheria, Influenza, Hepatitus B, Pneumococcal Polysaccharide, Polio. And we’re not done yet. More vaccination appointments over the next few months.

We asked Dr. J if any immune system restrictions would prevent me from visiting son Lieutenant Larry and his wife Kim in South Korea next summer.

“As long as your disease stays in remission” [a threat which will always loom over my head] there is no reason you can’t travel to Korea.” So Irene, Kim’s mother Karen, and I are planning on an early-summer 2009 trip to Seoul.

MEDICATION CHANGES

In August I discontinued all of the medications for neuropathy in my feet… with no noticeable effect. My drug list is now the shortest it’s been in 2 years – I’m down to taking only 5 pills a day (from a high of over 20 post-Transplant). One of those pills is a chemotherapy drug (Revlimid) and the rest control side-affects.

SIDE EFFECTS

Neuropathy – This feeling of swollen feet is at a stable state – has not gone away entirely, but is not getting any worse. Some days are better than others depending on where I am in the chemo cycle, but this level is quite tolerable.

Neutropenia – My chemo drug Revlimid reduces your WBC (White Blood Cell) and ANC (Neutrofill) counts, key indicators of the strength of your immune system. We’ve now been through four months of 3 week cycles where my counts drop, I give myself a white blood cell booster shot (Neupogen), counts recover for 4 – 6 weeks, and then they drop again. This cycle will continue indefinitely.

Of the life-style risks associated with Multiple Myeloma, germs and infections are right there at the top of the list (due to my compromised immune system). While I no longer take extraordinary measures to avoid infections, the clinic staff once again made it clear that if I am feeling sick they want to hear from me immediately, or if I run a fever that reaches 100.5 degrees I am to deliver myself to the UofM Emergency Room.

NEXT STEPS

My revised medical routine now includes a handful of pills a day, lab and blood work every 3 weeks, and a visit with the clinical staff every 3 months. Sprinkled in the schedule every 6-8 weeks is a 2 hour infusion of the bone strengthening drug Pentamidine. As long as the Myeloma remains in remission this routine is only minimally intrusive into my newly retired lifestyle.

Unless there are some dramatic changes [which are unlikely] my next blog posting won’t be until early 2009.

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 11

This week marked the end of my eleventh three-week cycle of medication following my bone marrow transplant. I am still feeling great and living a very-near normal lifestyle with only a few restrictions. In June Irene and I flew out to San Diego to attend my retirement party (which the Burton Group  conveniently co-located with its annual Catalyst conference). This was my first post-transplant experiment with a long flight, and although my feet bothered me a bit after sitting in an airplane for 5 hours, everything else was ok. I did not catch any bugs from the trip… although I was careful and wore a surgical mask on the plane.

Now that Irene and I are retired we’re spending a nice summer around the house. There are still a few seasonal restrictions due to my immune deficiencies: can’t cut the grass, can’t work in the yard or garden, and can’t swim in the lake. These restrictions will disappear after I receive inoculations this October/ December/ February and my immune system is back to full strength.

NEWS FROM MY CLINIC VISIT

Irene and I met with Tara, the Oncology PA, this morning at UofM (Dr. J is on vacation). Once again, my health seems to be proceeding as expected, there are no significant changes since my April checkup, and I am just coasting-along in maintenance mode.

MEDICATION CHANGES

My blood work during this 3 month cycle shows a reaction to long-term exposure to Revlimid, my chemotherapy drug. My white cell and ANC counts (antibody/immunity indicators) began dropping about 6 weeks ago. This disorder, called “neutropenia” is not unexpected of Revlimid patients and not a cause of major concern. My lab work (blood tests) interval was shortened from monthly to weekly – allowing the clinic folks to monitor me more closely. To counteract the neutropenia Dr. J prescribed Neupogen, which I self-inject whenever the clinic calls and tells me I need a booster shot. {Self-injection may sound awful, but it is trivial compared to some of the other procedures I’ve encountered. ;- }

SIDE EFFECTS

Neuropathy – This feeling of swollen feet continues to diminish, to the point now where it is hardly noticeable. In August I am going to experiment by discontinuing all of the medications (a large list of pills for this side-effect alone) that I take for neuropathy and see if those are still making any difference (the drugs are really more of a preventative measure than side effect treatment).  

Vision – As Dr. J. had expected, discontinuing the Dexamathasone steroid back in April reversed the decline in vision that I was noticing. My eyesight now (as far as I can tell, I need to get to an optometrist and get things checked out) is back to its pre-chemotherapy 2006 state. [see the April 30^th blog posting for background on this]

NEXT STEPS

For the time being, I have lab/blood work scheduled every week until we can better predict the interaction of neutropenia with my Neupogen injections. Perhaps the interval will stretch to bi-weekly when we see a predictable pattern.  Sprinkled in the schedule every 6 -8 weeks are an infusion of bone strengthening drugs (pentamidine) and an anti-pneumonia respiratory treatment (pamidronate). I’ll visit with Dr. J and his PA Tara in another 3 months. So unless there are some dramatic changes [which I think are unlikely] my next blog posting won’t be until late October.

That’s the latest news from Hamburg.

-larry

Chemo maintenance – end of cycle 6

This week marked the end of my sixth three-week cycle of medication following my bone marrow transplant. In general, all of the following is good news, and there were no surprises. Due to my continued good response and good cyto-genetics (a pick-up line I’m sure Tara uses on men at single’s bars: “Hey there, big fella. I’ll bet you’ve got great cyto-genetics”;-)

My reporting interval to Dr. J and his PA Tara has been extended again, to every three months or four chemo cycles.

I am still feeling great and living a very-near normal lifestyle with only a few restrictions. Still no foreign travel, still being real careful in large crowds, and some new restrictions this summer regarding outdoor activities and landscaping (for example, they don’t want me cutting my own lawn this summer for fear of the dust, pollens, and mold that may get kicked up from the lawn tractor).

The BIGGEST NEWS since my last blog posting is that I have retired. I have always said that I didn’t want to be that guy who works until his 65th birthday and then falls over dead the next day, and this seemed like the right point in my life to transition to being an official “old fart”. My last day with the Burton Group was March 31st. The other BIG NEWS is that Irene has also decided to retire, and her last day of work will be at the end of the school year, June 20th.

NEWS FROM MY CLINIC VISIT

My blood work this cycle shows all key areas to be within normal ranges, although my white cell counts have dropped a little bit. We’ll be watching them closely after each cycle to see if intervention is required.

MEDICATION CHANGES

Acting on recently published research and my complaint of a decline in vision (see Side Effects below) Dr. J decided to discontinue the steroid (dexamethasone) that I had been taking. This will probably improve my white cell count (reported as low in a previous paragraph), and help with the neuropathy and vision side effects.

SIDE EFFECTS

Neuropathy – Earlier medication adjustments substantially improved the neuropathy in my feet to the point where this is a minor issue. The most noticeable symptom of neuropathy is that, at times, it feels like my feet are swollen [when in fact they are not]. The best way to describe this feeling is that it’s like walking on a beach with shoes and socks on and getting sand in your shoes. Painful? No. Weird and a little uncomfortable? Yes.

Vision – This is the first time I am telling you about this side effect, but actually I had experienced it earlier near the end of my pre-transplant chemotherapy. My vision seemed to have gotten worse and my prescription glasses were a little blurry. The cheap reading glasses I used at the computer were no longer strong enough and I had to buy the next-higher optic number to see the screen clearly.

After my transplant and before resuming my drugs in chemo maintenance, my vision improved and things were clearer. The older cheap reading glasses were clear again and I set aside those newer, stronger lenses. But now, after 6 chemo maintenance cycles, the side effect has returned… things are getting blurry again and I find myself reaching for the stronger reading glasses rather than the weak ones. Dr. J thinks that this is caused by the steroid and the medication change mentioned above should correct this problem.

NEXT STEPS

As usual, I have lab/blood work scheduled every 3 weeks (each cycle) for the next few months. Sprinkled in the schedule every 6 -8 weeks are an infusion of bone strengthening drugs (pentamidine) and an anti-pneumonia respiratory treatment (pamidronate). I won’t see Dr. J and his PA Tara for another 10 weeks (July 23rd). So unless there are some dramatic changes [which I think are unlikely] my next blog posting won’t be until late July.

That’s the latest news from Hamburg.

-larry

Chemotherapy maintenance – end of cycle 3

This week marked the end of my third three-week cycle of medication following my bone marrow transplant. In general, this is probably the least newsworthy update I’ve posted in a long time – not much has changed since my last posting – which I suppose is what you would expect in maintenance mode. My lab results are good and have been stable as I enter into the 4th maintenance cycle. Status quo, boring, same-old same-old.

My energy levels are up and I have resumed almost all of my “normal” lifestyle activities (visiting with family, eating in restaurants, shopping in stores, more physically active). Yes: I still take a power nap every day, I am very careful when ordering food in restaurants, I don’t eat anything from buffet lines or salad bars, I listen closely for the sound of people hacking and coughing near me when out in crowds, I do not go outdoors when the temps are low and dress in many layers when venturing out in any winter weather, I am extremely cautious on snow and ice to avoid falling (weakened bones). But, other than those types of precautions, things are getting back to normal.

NEWS FROM MY CLINIC VISIT

The chemotherapy team (Dr. J and Tara) reports that the compiled results from the experimental chemotherapy study in which I participated were very good. They are really excited about what they have seen so far. My results are recorded as “near complete remission”, which means there are trace amounts of the disease in my urine. One patient did reach “complete remission”. Tara still says that I am their “model” patient. I consider myself fortunate to have been able to participate in the study.

MEDICATION CHANGES

If you review my previous postings you will recall that in maintenance Dr J decided to discontinue one (Valcade) of the three drugs in my chemotherapy cocktail in an attempt to minimize the neuropathy in my feet. Even without the Valcade the neuropathy worsened after only two maintenance cycles with just the Revlimid and Decadron drugs, and Dr. J suspected that the Revlimid was also contributing to this problem.

We experimented by discontinuing Revlimid during one week of the third maintenance cycle and saw positive results. As a result Dr J has reduced my Revlimid dosage from 25mg to 15 mg, and dropped my Decadron (steroid) pill frequency from 4 days to 2 days during each cycle. Recent studies have shown that lowering the Revlimid dosage reduces side effects without detrimental clinical affects – so we do not expect these changes to have an impact on my recovery nor the length of time before the disease recurs.

SIDE EFFECTS

Neuropathy – As mentioned above, we have been adjusting medications to minimize this particular side effect. Of the three neuropathy symptoms in my feet – swelling, tingling, numbness – the most noticeable is numbness on the bottoms of my feet. At these new medication levels this is not as bad as it had been, and I consider the current level of discomfort to be tolerable.

Bladder / prostate issue – No real change here. We’re watching this closely and I am meeting with the urology docs to monitor it and decide on future intervention.

Food, eating, weight loss – I think we can remove this item from future “side effects” lists. My appetite is definitely back and my weight is up to 148 pounds… which is about where I would like it to be. Now I’m wondering if I need to worry about the steroids propelling me past my ideal weight and back up to the 167 pounds that I reached under chemotherapy last summer? (sigh – I guess you just cannot win. What did Clemens and Bonds do when they took their vitamins?)

General disposition and chemo brain – I think we can also remove this item from future “side effects” lists. I believe that I am back to the “the old me”. Perhaps the only lingering problem is focusing on a single topic for long periods (hours), but this is dramatically better than how I felt back in November and December.

NEXT STEPS

As usual, I have clinic appointments and lab/blood work scheduled every 3 weeks (each cycle) for the next few months. I also have inoculations scheduled for the 12 month, 14 month, and 24 month anniversaries of my October transplant (Remember that I lost my childhood defenses when undergoing chemo – I have to have TB, polio, measles, mumps, chicken pox, tetanus… shots all over again. Until then, I am highly susceptible to those diseases)

NOTE – I’m never sure how often people visit my web site for changes/updates, and I wanted to advise you that postings will become less frequent here on the web site. I usually publish a new posting each time we meet with the clinical staff. At one time that was every three weeks, then in cycles 2-3 of maintenance it changed to every 6 weeks, and now Dr J has extended clinic visits to every 9 weeks.

That’s the latest news from Hamburg.

-larry

Saturday January 12th marked the medical milestone of 100 days after Transplant. Reaching 100 days without serious medical complications indicates that the procedure was generally successful, and is the day on which my immune system should have recovered to the point that I can resume the activities of a “normal” life. For the most part, all of the following paragraphs describe VERY GOOD news. The Bone Marrow Transplant was highly successful; this week’s blood work indicates that the disease is in even further remission than when tested only 3 weeks ago; and the research team believes that I can sustain this momentum in maintenance mode for many years.

WHAT MAINTENANCE MEANS (version 2)

Now that I am “in maintenance” I am discovering that this is just as disruptive as the Chemotherapy cycles were months ago. There are lots of pills to take every day: some before food, some with food, some after food, and some related to when I took other pills. Still a very complicated pill-popping schedule.

There are still tests, procedures and clinic visits: Monday this week was lab work, a 24 hour urine analysis, a pulmonary function test (exact same results as pre-Transplant – yippee!), a nuclear medicine MUGA cardiac analysis (66% cardiac function after Transplant – a very good result), Wednesday included a Pentamidine breathing treatment (prevent pneumonia side effect of chemotherapy) and a 120-minute Pamidrinate infusion (strengthen bone walls weakened by the disease).
Wednesday also included two meetings: one with the Transplant Team (Dr. Khaled) and one with the Chemotherapy team (Dr. Jakubowiak).

• The Transplant Team feels that the procedure was a success and that I am recovering well. Dr. Khaled lifted many of my restrictions: I can drive again, I can shave with a safety razor, I can begin eating most foods (pepper, salads prepared at home (NO restaurant salad bars or buffets!!), eating in restaurants, visiting & limited travel (still wear a mask in large crowds, no international air travel (keep in mind I have no natural immunities to measles, mumps, chicken pox, tetanus, polio… and will not for one year after Transplant), must wear a mask on domestic air flights) .

• The Chometherapy Team expects to see further improvement in my lab results over the next several weeks/months. So even though the transplant is over, the chemicals and replaced stem cells are still battling the disease within my bone marrow, and the team expects me to reach a point of “complete response”. This is indeed good news – predicting that I will remain in maintenance mode for many years.

SIDE EFFECTS

neuropathy – I still have the pain/tingling/numbness in my feet, but it seems to be getting better. I have changed the drugs that we are using to attack it… and we are not sure whether the drugs are responsible for the improvement or the side effect is simply wearing off. I am also not sure how this side effect would be affected by air travel: could I sit still in a cramped airline seat for 4 hours? What do neuropathy feet feel like in a pressurized cabin at 36,000 feet?

bladder / prostate issue – my bladder seems to be getting gladder but it is definitely not functioning as well as it was prior to Transplant. We’re watching this closely and I have future clinic visits scheduled with the urology docs.

Food, eating, weight loss – I am happy to report that my appetite has returned and that I no longer barf at the smell, sight, or sound of food. (hooray!!) I am still underweight, however, at 140 pounds and Dr. Khaled suggested today this is due to the loss of muscle mass and will be regained through (GASP) exercise.

General disposition and chemo brain – Irene reports that I continue to improve and am acting and behaving more like “the old me”. I agree with this assessment, but have found it impossible to focus on, and complete, the projects that I thought I would be working on during my recovery.

TWO MINOR SETBACKS – having a weak immune system

We were able to visit with Irene and my families during the holidays. However, despite special precautions and making sure everybody we met was healthy, I still managed to get a bug somewhere and came down with a cold and sore throat (which I was kind enough to share with Irene). Fortunately, I was able to bounce back without medical intervention and no serious consequences.

As reported above under “side effects”, the bladder/prostate situation had been improving until I came down with a bladder infection last week. We are treating the infection with antibiotics and expect it to clear up this week… then we can resume progress on solving the urinary retention and self-catherization issue.

NEXT STEPS

Once again, I have discovered a gap between reality and my expectations – particularly what it means to be in “chemotherapy maintenance mode”. Looking at the activities of this past week, tracking the confusing pile of 20+ pills I take every day, scheduling the 3 pages of medical tests and clinic visits spread over the next several months – are a lot more work and require more attention than I anticipated.

And I am a geek, a detail person, anal-retentive! How does a normal person handle this? How do old people handle this? (egads)

That’s the latest news from Hamburg.

-larry

BIOPSY RESULTS

The biopsy results indicate that the Transplant was successful, putting me in a state of “partial complete remission”. [does that sound like an oxymoron or what?] The results show a successful Transplant that pushed the disease further into remission to a level of 0.4 percent. [for comparison: my initial diagnosis biopsy showed a level of 40%, my post-chemo but pre-transplant was 1%; this post transplant is 0.4%]

PROPOSED FUTURE TREATMENT

As expected, Dr J continued to be skeptical about doing another transplant immediately, and feels that our best choice is going on a “maintenance” program and 1) allow me more time to recover from the Neuropathy, nausea/appetite, and bladder/prostate side effects, 2) expect to do another transplant years from now when the disease emerges from remission and 3) hope for a medical advance that cures the disease in the future. Unfortunately, the neuropathy in my feet limits my maintenance drug choices, so rather than the previous three drug RVD (Revlimid, Valcade, Dexamethasone) cocktail I will just be taking a two drug combo of RD (R& are pills… which means that the RD combo would not involve chemo infusions. That’s kinda nice!). More unfortunately, due to the absence of V from my maintenance regimen, the disease is likely to recur more quickly than if I were getting the complete RVD package. [sigh]

WHAT MAINTENANCE MEANS

Maintenance involves a 3 week cycle of two weeks with the RD chemo drugs, one week without (just like my chemo cycles before, but with lower doses). At the end of each 3 week cycle I get blood work to measure progress and check for recurrence. At the end of every-other cycle (every 6 weeks) I meet with the chemo team to discuss any problems or side effects. The first cycle is set to begin December 21st and Dr J tells us to plan on continuing this maintenance routine for a calendar year.

IN THE MEAN TIME

I am still within the critical “Transplant plus 100 days” window, still immune suppressed, still being very cautious with any travel outside the house or contact with people (I wear a surgical mask in large crowds. I wonder what would happen if I walked into my local bank with that on?!?) I am feeling good and the side effects mentioned in my previous blog postings are gradually improving.

I did manage a brief experimental visit with family at Thanksgiving (with no ill effects, hooray!), have gotten my driving privileges back, and went Christmas shopping by myself for a few hours (small stores, no mall visits). So I am getting back to normal although progress is slow. I expect to be able to visit both Irene and my families at Christmas, but have been advised to wear a mask if there are little kids around and to stay home if there are people with colds or recent illnesses.

That’s the latest news from Hamburg.

-larry