Let's go do Some More

Well got the biopsy results today and the discrepancy in the cell count is not as large as last time but the biopsy # is still too high to go forward with the transplant (15%). So 2 more rounds (months) of chemo thus the transplant won't be till late June or early July at the soonest.

I was hoping against this result. Here's wishing that the month I've been off the Chemo will reduce the side effects when I get started again. The last week of the last round was pretty nasty with them.

Another downside of this change will be that everything is pushed back a couple of months. A direct result is that I will miss doing my thing at the Day Out With Thomas event which I kind of enjoy. Right now it looks like it will be mid October before I'm back in full circulation.

Speed bump in the road

Had a bit of a setback on the transplant process.  Went through the 4 cycles of chemo (which was rougher this time than las). The blood tests at the end of the last cycle indicated that the chemo had done its job. There were only 5% myeloma cells in the blood which is a low enough to move on with the transplant. So we scheduled the pre transplant tests. One test was a bone marrow biopsy to confirm the blood numbers. Well low and behold the myeloma cell count from the biopsy was 40%, way to different from the blood work, and if correct is way too high for the transplant. That was 2 weeks ago. 

So have scheduled another biopsy to see what the results are this time. If it continues high we will need to do more rounds of chemo (I hope not). Did the biopsy today and unexpectedly it was painless, the last one was quite painful. So more uncertainty and won't know for a couple of weeks where we go next.

Not as optimistic as last time.

Visited with the transplant folks at Rush to plot the way forward. Although the now primary Dr. was part of the team last time I had never worked with him before.

Maybe its just his view of things, or perhaps things are significantly different but the tone was a lot less optimistic than last time around.

First let's look at timing. They would like me to do 4 Chemo Cycles, have completed 2, so the transplant would be late Feb or early March.

Before that we will have to go through all the prequalification tests again (Lung function, heart etc.) before the procedure will be aproved. The Dr. was quick to point out that I am 3 years older and weaker than last time so getting past these tests may not be so easy. 

The next downer was the question of more stem cells. If you recall we came up short on collecting enough for 2 transplants last time around. The Dr. seemed to dwell of the fact that it is very hard to get more the second time around. Wish they had told me that before.

Next fact was that the Chemo drug that they use forcthe 2nd transplant  is much harsher that last, so be prepared for a rougher experience.

The good news is that I didn't use Medicare for the first one as they allow only one so they'll pay for this one.

So some interesting issues to address before the transplant is a sure thing.

It's different

I have to say the whole Chemo experience this time around is quite a bit different than 3 years ago. 

On this go round I get 4 drugs on Monday and 3 on Tuesday. There aren't much in the way of side effects on those days. But come Wednesday, around noon it hits me. Dizziness, shortness of breath if I try to do anything and inability to fall asleep. It's especially bad this week as both Eileen and I have bad colds/flu. 

Another issue is the hunger that results from the steroids. Last go round gained 30 lbs, not that bad yet but I can feel it coming.

I'm going to see the transplant team on Tuesday at Rush to plan the way forward, let's see where that goes.

Part II

Well it looks like we will be reactivating the blog. The latest biopsy shows a recurrence of the myaloma, which I guess I have been expecting. We will be starting a chemotherapy regimen soon with another stem cell transplant next year. I got the lowdown on all the side effects yesterday. But before it all starts, it's time to take a couple of trips! 

I'm going to go chase some diesels next week, more details to follow

EXIT stage right

I haven't posted much recently as there really hasn't been much news. That's a good sign.

Yesterday was my six-month follow-up with the transplant Dr. At six months they feel that you are close to being back to normal, whatever that is. All was well with my blood work and they felt that I had progressed fairly well. So at this point it will simply be continued maintenance on chemotherapy until such time as the myeloma reappears. My oncologist keeps reminding me that it will reappear but also points out that there are legions of new drugs coming out to combat this disease. He feels that the next time around we will be using a drug that we don't even know about yet. So I guess that's an optimistic way to look at it. So with that I guess I'll exit stage right and discontinue any updates on the blog unless and until  myeloma  issues resurface. and once again thank you everyone for your support throughout this process!


One more thing, I have been quite surprised if one item relative to this blog. The blog does keep track of the location of the readers. Here is a list of those locations in the number of times the blog has been accessed from there.

I can guess who some of the folks are that are looking at the blog from places like Japan the UK and Germany but for the life of me I can't figure out who is interested that lives in Pakistan or Morocco or the Ukraine. Oh well guess I'm just an interesting character.

United States	2020
Germany	121
United Kingdom	119
Russia	63
Ukraine	20
Pakistan	13
Morocco	12
New Zealand	12
Japan	8
China	4

Day +75 Wait, just a little bit longer, but it was worth it!

When last we talked the 60 day marrow biopsy had been postponed because of blood thinner issues.  The doctors appointment right after the postponed date (4/29}was uneventful and it was decided to wait 2 weeks for me to return to the Dr. as the results weren't expected to be available until last Wed anyway and my blood numbers were excellent. 

The biopsy that had been rescheduled 5/1 was completed successfully and almost painlessly except for one jolt that seemed to touch every nerve in my body. It was a bit frustrating waiting for thr biopsy results that were the measure of how successful the transplant was.

So today was the day of reckoning, no more waiting.  And the results were great.  No myeloma cells in the marrow were detected.  This means that they aren't creating the rogue blood cells that attack the kidneys, bones and the immune system.  So GREAT!!!

However the Dr. did remind me that this does not represent a cure and the development of the myeloma cells is related to chromosome issues that are not affected by the transplant. So what we are looking at is remission, not a cure. (Having said that the doctors have pointed out that some patients, about 10%, given the same treatment I had had have gone 5+ years without a recurrence.  In some circles that could be considered a cure.)

Anyhow, the plan is to continue with a low dose of chemo to limit the possibility of a relapse.  I'll take it.

I'm not totally out of the woods yet however as my immune system continues to be compromised, less so every day, and I should be careful until day 100. So there are still cautions.  In addition I will need to repeat all the childhood shots vaccinations etc. as all that immunity got wiped out in the transplant process.

BUT ALL IN ALL a great success! Thank you for all your support, it means a lot to me. And thanks to all those medical researchers that developed this procedure, as well as the hospital staff that has to put up with me.  And thanks Eileen for being there through this all.