Stem Cell Transplantation Coverage Expanded

The Centers for Medicare & Medicaid Services (CMS) announced Tuesday that it is expanding Medicare coverage of autologous stem cell transplantation (AuSCT) for primary amyloid light chain (AL) Amyloidosis.

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1-Year Evaluation Test Results

This morning I contacted my doctor to discover the results of my bone marrow and immunofixation tests. I had written on Wednesday that the preliminary test results were mixed, and that it could have gone either way. As I had guessed, the actual results were just as complicated.

The Good

• My bone marrow and serum tests were very good. They still do not show any signs of amyloid production.
• My standard blood tests show an overall improvement, which is to be expected as I recover from the chemotherapy.
• Light-chains production is slightly elevated, but the ratio (which is what is important) is still normal.

The Bad

• My urine still shows a slight abnormality. These numbers suggest that there is still amyloid in my system.
• The protein in my urine is not changing -- at all. Based on the improvement of the other numbers, this is unusual.
• Some of the numbers on my blood tests are starting to slip, which could be connected to presence of developing amyloid.

The Ugly

• Based on the data above, I have not attained a complete response to the treatment.
• Although I may have options on how I want to continue to be treated, my protocol states that if a complete response is not accomplished after the first transplant, then I need to go through a second transplant.

Next steps: I go to BUSM for a 'sanity check' urine test, to verify that the numbers they are seeing are correct. The doctors will consult with each other on July 9 on a game plan, then will present options to me on on the week of July 12th.

I am a little upset that I was not successful the first time around, but these results really make sense considering how I am doing and how I am feeling. I seem to have peaked health-wise, and my kidneys have not improved significantly in the last few months, so this could explain the slow recovery. I am willing to go forward and do what it takes to get this thing out of my system -- at any cost.

To be continued...

One Year Evaluation: Day 3

Well, it's finally over. Three days of tests, meetings with doctors, more tests... Although half of the time you are twiddling your thumbs in the waiting room, it is a grueling experience. The bone marrow biopsy really takes a lot out of you. It's been over 48 hours and my back is still a little sore.

There won't be any definitive answers about my status until Friday, but the preliminary blood and urine tests are very clear on two things. The first conclusion is that my body is recovering nicely from the stem-cell transplant. The blood tests do not show any red flags of a potential relapse. The second conclusion is that my kidneys have yet to receive the memo. There has been no significant change in its condition since I was released last August.

This means that one of two things are happening:

1. I have achieved a durable response with the treatment, however, my kidney is too damaged to recover. To see this after a treatment is unusual, but not rare.
   
2. There are still active amyloid deposits within my kidney (and body). The old amyloid is being flushed out of my system, however new amyloid is causing new damage. This would explain why I am not getting worse (but not getting better).

Obviously, I am not happy with either of these outcomes, but obviously, I'm rooting for the former and not the latter.

Perhaps the most positive note is my tryglycerides. They are down to 430 (from 644 in May). This recent drop I credit to not any of the medications I am on, but the fish oil I am now taking every evening.

It's been a long day, so I will cut this short. I make a phone call to my doctor on Friday morning to learn the results of the biopsy and light chain tests. Then we will take it from there.

One-Year Evaluation: Day 1

It was approximently one year ago that I came to BUSM for my amyloid pre-evaluation. Between the drugs I was on, and my constant fatigue, I don't remember much at that evaluation, but I do recall an episode right after my first bone-marrow transplant. I remember that the doctors were having trouble getting a bone marrow sample, and they dug into my bones not once or twice... but six times. It was a horrible collection, and the procedure left me bloodied and weak. I remember walking back to the waiting room, with my shoes in my hands, for I was unable to bend down and put them on. Bending down to sit took forever, and was very painful to do. It was at that moment that I realized the gravity of my situation. This was not a simple thing that I had, and there would be a long road ahead of me.

Deflated and fatigued from the procedure, I sat in that waiting room chair for a couple minutes, trying to reflect upon the situation. I was nearly about to doze off when a woman who had been sitting across from me introduced herself. She said she was also an amyloid patient, who was there for her one-year evaluation. "I promise you," she said, "in one year, you will feel better than you do today."

That is all I remember her saying. I don't remember much about her other than that she didn't look sick like an amyloid patient, and those words. And I had forgotten about those words, until I walked down the clinic hallway into the waiting room this morning, one year after that rueful day. She was right, after all. I am bruised from all this, but definitely not beaten.

The first day of an amyloid evaluation is packed with a number of tests -- blood and urine samples are taken, a chest x-ray is performed, and of course, the bone marrow biopsy. I was going to surprise everyone with some pictures this time, but my mother wasn't able to take pictures due to, shall we say, technical difficulties. I promise to purchase a camera with a big red button that says "PRESS HERE" for my next visit.

Some of the lab results are coming in, but I won't have numbers until Wednesday, and the results from the bone-marrow biopsy until Friday. So far the general numbers look good. My triglycerides have dropped significantly, but are still dangerously high. My kidney is doing well, but preliminary tests are confirming what we had feared -- that there has been no significant improvement in my kidneys since the treatment.

I will report some numbers on Wednesday after I've consulted with the doctor. Fingers crossed.

One Week

It's coming fast... my one-year evaluation at BUSM starts next Monday, for a three-day extravaganza of tests, doctors appointments and of course, the never-ending stays in the waiting room. I will have every time of bodily fluid sampled, and have a 10-inch needle dug into the back of my hip. I can't wait.

I'm pleased to report that I have been able to get control of the swelling in my legs. The trick, unfortunately, is to use the thigh-high compression stockings. They are as uncomfortable as hell, but they do the trick. After wearing them for a couple days in a row, I'm able to keep the fluid buildup down for a couple of days without wearing stockings. This will come in handy during the weekends, when it is simple too hot to wear anything but shorts. Plus, I'm learning that when it is excessively hot, it makes me swell up easier (sigh)

That's not to say that things are fine and dandy in edema land. I am still taking 80mg of Lasix twice a way along with a low-sodium diet just to keep it in check. It has slightly improved over the last few months -- but only slightly.

Stay tuned.

Declining Fortunes

It has now been eleven months since my stem cell transplant. This means that the time is closely approaching for my 1-year evaluation. On the week of June 26th, I return to Boston Medical Center for three days to confirm if the treatment is continuing to keep my light-chain levels down. They will essentially perform the same tests that they did not be in January -- a ton of blood tests, a 24-hour urine collection, and of course, the dreaded bone marrow biopsy.

While the 6-month mark is a good barometer on the progress of the treatment, the 1-year really confirms it. If your light chain count is within normal range at the 1-year mark, the doctors say you have had a "complete response". Personally, I find that holding off on this diagnosis until the one-year mark is arbitrary, as you can still relapse after this point. I've met a couple of other patients who have had two stem-cell transplants, and they had relapsed anywhere between 6-months and 4 1/2 years from their first treatment.

I had been feeling good and flying high until my last appointment with my kidney doctor two weeks ago. It was at then that I had learned that my kidneys were not improving at all. This really brought me down, and has had me surprised, since I felt that until then I was doing very well. It has change my outlook on my upcoming evaluation. Before that appointment, I was cautiously optimistic. Today, I am anxious and somewhat worried at what they will find.

To make matters worse, I seem to have peaked in my recovery. My stamina and energy levels seem to have stabilized, and my edema has not changed -- if anything, it has gotten worse. These last few days I have found myself upping my Lasix dosage to keep up the increased fluid in my legs. Since I have been tracking my weight and medicine intake for the last year in my daily log, I can tell when things are acting a little wacky. It was only a month ago that I had finally succeded at finding a standard dosage to keep the edema in check. Now, I am having trouble again, and I am unable to tell yet if this is just another 'hiccup' or the beginnings of a problem. I'll be able to get more information by how I manage during the week.