Larry’s Medical blog

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

Thanks to all for your blog comments, emails, cards, and phone calls with prayers and encouragement. I cannot express how much those mean to me.
– – –
Transplant recovery continues, still very slowly. The hair on my face is growing back and I shave daily (with a shaver… still can’t use my usual safety razor for fear of a cut and infection). The hair on my head, however, has not resumed growing and all I have up there is the lingering stubble that never fell out during chemo. I was hoping to have hair by Christmas.

Since my last posting we have met with the Chemotherapy Team and had an MRI… but other than that things are pretty “normal”. Irene has returned to work full-time, leaving me home alone all day to fend for myself and prepare my own meals.

Due to my weakened immune system, I still stay in the house all the time. Aside from medical appointments, I have only left the house a few times for other events – one of which was the Gauthier Thanksgiving gathering, which I attended briefly after 1) determining that everyone was healthy and wouldn’t infect me with anything and 2) waiting until they had all finished eating before showing up (due to problems with food sight/smell and nausea). Although I didn’t get a Thanksgiving dinner out of it, I was able to visit with family members whom I had not seen since before my Transplant.

The success of that short Thanksgiving visit raises my comfort level for attending family Christmas gatherings – as long as everybody is healthy I should be able to mingle with the Lirette and Gauthier families.

SIDE EFFECTS

– NEUROPATHY – still have the pain in my feet (numbness/tingling). This is a lingering side effect from my original chemo last summer, and unfortunately may be a factor in determining what treatment and drugs are available to me in the future. (If the experimental chemo drugs gave me this problem, we cannot continue to use these drugs as “maintenance mode” therapy for fear that it will cause even more trouble with my feet.)

– the bladder/prostrate issue. The urology docs are hoping that this problem self-corrects, and there has been some improvement here (albeit slow). Last week’s MRI revealed a small mass in the bladder, which set off a medium panic on my part until the urologists compared last week’s MRI to pre-chemo and pre-TURPS MRIs that showed the same benign mass.

– food, eating, weight loss. My problems with nausea and vomiting at the sight/smell/sound of food has gotten MUCH better. I can eat anything that Irene prepares for dinner, although the portions I eat are still smaller than my pre-transplant appetite. I also prepare my own meals (breakfast, lunch, snacks) in the kitchen, something I could not do when the sight/smell of food sent me running to the bathroom. I have stopped losing weight (yippee!), but have only gained back a pound or two and am still under 140 pounds.

– my general disposition and “chemo brain”. Aside from the Neuropathy (AKA pain) in my feet, I am not in any pain nor taking any pain-related medications. The chemo brain seems to also be getting better, but like everything else very slowly. I’d still like to request “Please return me to my old self.”

NEXT STEPS

Tomorrow (December 5th) I return to UofM for a Bone Marrow Biopsy. The results (probably a week later) of the biopsy will shape the decision on the next Transplant: do another Transplant immediately or wait? Unfortunately, that decision has now been complicated by the Neuropathy problem and the fact that drug side effects may limit the treatments available to me during a remission or maintenance period. Perhaps UofM will recommend a second Transplant immediately rather than wait several years for the disease to emerge from remission. Can my body tolerate another Transplant now? Would I lose more weight? (egads)

Stay tuned…

-larry

The Bone Marrow Transplant team released me from the hospital on Tuesday, Oct. 16th. I was happy to be home. Being in my own bed and eating semi-normal food has made a difference. Not that everything is wonderful though. I still have a long road ahead of me.

Generally, I am feeling pretty good. I do not have any serious pain. Although the neuropathy in my feet has returned and is uncomfortable, it is not as bad as it was at the end of chemo.

Obviously my recovery from the transplant went real well. I was released from the hospital after only 13 days, which is faster than average. I am still very happy that I did not get the dreaded chemo mouth sores. My appetite is ok but not back to normal levels. I am not having trouble eating but have an occasional nausea episode prior to a meal. I have lost about 10 pounds from the time that I was admitted until now. Sleeping in my own bed is a whole lot better than in the hospital.

I will be pretty much homebound for the next 100 days. This imprisonment comes with a complete set of instructions regarding special diets and immune system precautions. Hopefully I will be able to keep myself occupied for this time and manage not to go stir crazy. One of the effects was something that nurses talked with us about called it “chemo brain”. Patients report that they just don’t feel like themselves. I am definitely feeling this – it is hard for me to focus on a single topic. For example, none of plans to work on the genie web site have happened, and I cannot seem to wrap my brain around any of it right now. So I walk around trying to figure out what I am supposed to do all day. I am hoping that this stage does not last long… I’m finding myself watching a lot of “spaghetti westerns” on cable – at least it’s not the soap operas.

I am sick and tired of Catheter Zeta Bones and Elsie. We have an appointment on Monday to see the Urology team the find out what is happening, or is not happening, with my bladder and prostate. Elsie is scheduled to be removed on November 6th. That will be a good day.

The next three big steps from a cancer treatment standpoint will be: meeting with the Transplant Team on November 6th to review blood level progress since being released from the hospital; meeting with the Chemotherapy Team on November 13th to review progress since chemo; and finally, the “transplant +60 days bone marrow biopsy” which will reveal the real success of the bone marrow transplant itself.

From this data we will make the decision about a second transplant: if at all? how soon? from whom?

That’s the latest news from Hamburg,

-larry

The comment from the doctor this morning was “you are a poster patient”.

On Saturday, I bottomed-out on my blood counts and am now on the way up. My progress in the last two days has been very good. I have not had all of the terrible symptoms that were described to me. I was very fortunate to have missed the mouth sores. My hair started falling out two days ago – still a lot left but won’t be for long. I am still tired and sleep a lot.

The hardest part has been trying to eat. I have worked hard to get the food down. Even though my numbers are up my appetite has not returned to normal. That may be the result of the wonderful hospital food. Hopefully things will be better when I get home. For the most part I am feeling pretty good, although my earlier problem with Catheter Zeta Bones has not been resolved.

Irene has been here with me every day. Usually from 7:30am until 9:00pm. I do not know how I could have gotten through this without her encouragement.

So after nearly two weeks in the hospital, I have been told that I have made enough progress from the bone marrow transplant that I will be discharged on either Tuesday or Wednesday and sent home to continue to recover from there. I will probably be meeting with Urology later this week. Until then a portable Catheter Zeta Bones will be coming home with me.

I want to thank everyone for their encouraging comments, emails, cards, pictures and cookies. They helped me get through my days here at the hospital.

-larry and portable Catheter Zeta Jones (Forrest Pump was disconnected)

Well, we are now 4 days beyond the Transplant and 6 beyond the Melphalan chemo infusion. Of those 2 events, the one-time chemo infusion remains the driving factor affecting my frame-of-mind, health, appetite, digestive functions. My blood counts are continuing to fall (as expected) and hopefuly they will bottom-out in the next few days. After that (lord willing and the creek don’t rise) we turn the corner and begin a gradual climb to recovery. And, about a week after that we go home.

For the most part, I am doing pretty good. I am not in any serious pain; I am tired and sleep a lot. I managed to get rid of the clanging pump. They replaced it with a much quieter pump which I now call Forrest Pump. But at least I can sleep at night.

The chemo seems to have affected my bladder functions so, four days ago, I was outfitted with a catheter. The good news is that I don’t have to get up in the middle of the night to go to the bathroom; the bad news is that this is NOT real comfortable when performing my daily 1/2 mile hike for exercise. This morning, the urologist decided the catheter was no longer needed, so out it come (ouch!). This afternoon he decided it was probably necessary after all, and ordered a new catheter inserted (ouch2!). I have come up with a nickname for my catheter that I think is appropros: (drum roll) CATHETER ZETA BONES!

That’s the latest from Ann Arbor,

Larry, Forrest Pump and Catheter Zeta Bones

All,

Well, yesterday’s transplant went quite well. A little weird on the receiving end… the frozen cells rolled into my hospital room inside a stainless steel liquid nitrogen container that looked like R2D2. The cells are normally maintained at minus 160 degrees C, and had to be warmed in a liquid bath immediately before being pumped into my veins. The entire procedure took about an hour from start to finish…. then I was real tired and just wanted to sleep.

I got a good nights sleep last night, compared to Wednesday night which was awful… I am connected to a continuous feed IV pump that is very loud – had to get used to that thing clanging all night long.

Not real easy typing in this hospital bed – perhaps I’ll write more when I can get more comfortable.

-larry

My fashionable haircut

Sibs,

Yesterday was the ugly Melphalan chemo infusion (as an outpatient) and this afternoon I’ll return to UofM to be admitted for my Bone Marrow Transplant/Stem Cell Recovery.

LAST-MINUTE PRE-ADMISSION PROCESSES

I prepared for my admission to the hospital by getting the recommended “pre-chemo buzz haircut”. The medical staff advised that, since it is certain I will lose my hair during this treatment phase, many patients find it better to get a buzz rather than experience the emotional trauma of having it come out in large clumps in the shower or on the pillow every night. Thus, my new image.

Yesterday’s schedule for a chemo infusion was much like every other infusion for the last six months: go to the lab for the blood draw, meet with the docs regarding the lab results, go to the infusion area and get the drugs. Two things were different than normal:

– it took THREE HOURS for my blood analysis to get posted in the computer, messing up the schedule and making me and the docs very unhappy. We did not get home until after 8:30pm.

– the Melphalan chemo is nasty and required special measures. First, Melphalan is one of the those drugs that give you nasty mouth and throat sores, so they advise you to eat/chew ice chips continuously while getting the infusion. Ice cools the mouth and throat, and reduces blood flow, thus limiting the impact of the chemo in those area (or so they say). Second, this drug has special administration requirements so it took about 2 hours, along with 1 large bag and two large bottles on the IV tower, to get this into me.

COMMUNICATION FROM ME WHILE IN THE HOSPITAL

I have been trying to develop a better mechanism than daily emails for keeping you updated on any medical news during my hospitalization – some of you may want to know on a daily basis how I am doing; others may find daily email to be overwhelming. So, I have started a personal blog – short for web log. Click here: www.larrygauthier.com

A blog is very much like a public journal or diary, designed for one person to share his/her experiences and ponderings with a large community of people. For the most part, blogs are intended as one-way communication, although you can press the “Send Feedback” button and reply to a posting – just keep in mind that your feedback will be visible to the entire group. For more private replies you should probably send me an email (which I will be reading while in the hospital).

For phone calls please DO NOT call the hospital directly, see email instructions with cell phone numbers.

That’s all for now. Next Transplant Update will be from the hospital via the blog (assuming that the patient wireless network functions properly).

-larry

Sibs,

Well, it appears like almost all the necessary poking, prodding, peeing, bleeding, and whining have been accomplished. I am scheduled for admission to UofM on Wednesday afternoon, October 3rd.

PREPARING FOR TRANSPLANT

This transplant (and maybe the next one) is a self (autologous) transplant in which they harvest my own stem cells and give them back to me after a serious dose of immune-system destroying chemotherapy. In preparation for the harvesting, I self-injected large volumes of Neupogen, a white blood cell booster. I also received a port in my chest, that I have named “Elsie” – a triple lumen catheter that will be used for drawing blood, administering chemo drugs, harvesting stem cells, and giving the stem cells back to me.

I walked into the harvesting (Apheresis) clinic last Monday with a white cell count of 42 – way beyond the normal range of 5 – 12.Based on my height and weight, we learned that my stem cell harvest goal was 6 million cells – enough for two transplants of 3 million cells.

Despite my off-the-charts white blood cell count of 42, we only collected 2.3 million cells on Monday. On Tuesday my white cell count was even higher (50!), but we only collected 1.2 million cells. Hmmmm…. On Wednesday the Apheresis clinic staff “manually” adjusted the stem cell collection process, and collected 2.7 million cells. Victory! We had 6. 2 million cells and I could stop the four-needles-a-day injections of Neupogen (which was causing painful side effects). This was the last hurdle before the Bone Marrow Transplant/Stem Cell Recovery.

ADMISSION TO THE HOSPITAL

On the afternoon of Tuesday, October 2nd, I have an outpatient visit with the transplant physician and support staff, who will outline more details of the process and answer any questions. I will also receive the infusion of the immune-system destroying chemo drug Melphelan. Then they send me home.

The next day, Wednesday October 3rd, I have an appointment at 2:30pm in which they will admit me to the hospital. I’ll be in a single room with isolation restrictions. The restrictions are not as bad as I originally thought (no masks, gowns, footies needed). They limit the number of simultaneous visitors, require visitors to wash their hands on the way into the room, restrict anyone from using my bathroom, and of course require that all visitors be healthy and not carrying any active germs.

THE TRANSPLANT

Compared to all the other stuff I’ve been through, the actual transplant is very anti-climatic. On Thursday or Friday a nurse will walk in the room with a partially filled IV bag, connect it to my IV pole, and in 20 minutes I will have received my stem cells. Ta-Da.

For the next 2 – 3 weeks, the medical staff will monitor my immune system’s recovery from the Melphalan and my progress in the areas of eating, not throwing-up too much, not having diarrhea, and having enough energy to get up-and-around. When they think my immune system is strong enough, and I am healthy enough, they’ll send me home. At that point, I begin the “100 Day Count” – 100 days of recovery from receipt of stem cells until I am healthy enough to leave the house… although special precautions may be required. More about this later.

VISITORS – IN THE HOSPITAL AND AT HOME

During my hospital stay and my recovery I cannot predict how I will be feeling or whether it is safe for me to have guests. If you feel like visiting please call Irene and check – she’ll be the gatekeeper for those decisions. Please don’t be offended if the answer is no.

Finally – we were told that I am not allowed to have any flowers or plants in my hospital room or near me at home. So, if you were thinking of anything in this category… cross it off the list.

That’s the latest news from Hamburg.

-larry