Tuesday, April 20, 2010

Satisfied With Stability?

The news yesterday should be measured against expectations. Depending on what we/you hoped for or expected, it could be good or not so good, but definitely not bad. Thirty days after transplant, the IGGs haven't moved. They're in the low 1900s, and were at 1875 in early March when this latest treatment started. (normal being between 600 and 1600) I had a bone marrow biopsy today and we'll have a bit more information next week. So what does this mean? Any reduction in IGGs would be caused, at this juncture, primarily by the high dose chemo I received prior to transplant. That didn't happen. The main chemo drug was melphalan. That was the main drug in my first transplant and also a key drug in my second transplant. We know how well that worked in those transplants. NOT. I repeatedly told Dr. B in Arkansas that melphalan did not work with me and my concerns were dismissed because, I was told, melphalan would given along with 8 other drugs. Those 8 other drugs didn't do anything to my disease either, other than make it even angrier than it already was. And, of course, the combo package made me extremely sick.

I told Dr. G. that melphalan does not work with my disease. At least he acknowledged my concern but told me melphalan is in every myeloma protocol they use and that the allo transplant would also have my brother's cells to work with. How is it that I know what won't work with me but the docs don't, or refuse to believe I could know such stuff? Yes, I'm frustrated. That being said, it's probably fair to say there isn't a chemo drug that could be given in high dose that would work with me, since I received every possible drug in Arkansas and nothing worked. As Dr. Rifkin noted upon my return from Arkansas, we need to use a little more finesse with my treatment.


Dr. G's spin on my IGGs is that my disease has been stable for more than 2 months and that is nothing to dismiss. In that he is correct, as my experience in Arkansas was that after about 2 to 4 weeks of each of the 3 high dose chemo treatments I received the myeloma counts started rising again. Dr. B's flame throwing super beam plus couldn't even stabilize my disease! Also, we won't know the full effect of the pre transplant chemo until 90 days post transplant, so downward movement could still occur in the next couple of months. Stable disease is definitely better than raging disease.


All is not lost, however. Because I have Mike's cells, they stand at the ready to attack this myeloma. They haven't been highly active in that fight because the anti rejection drugs mask my cells. So the plan is to start weaning me off the anti rejection drugs in about 3 weeks, being careful not to let graph host disease set in. Once off the anti rejection drugs, I'll get another infusion of Mike's cells and start on a low dose of revlimid. I asked Dr. G if remission is still possible. After a long pause he said, "I'm going to say yes. Definitely." I'm not sure what to make of that. Not to put the pressure on, buy I'm still counting on you, Mike.


Susan's expectations were higher than mine. She looked at me and said, "I was hoping for a miracle." My response: "Don't ignore the miracle standing right here in front of you. It's been five years and I'm still here." The anxiety of all this has taken its toll as she came down today with a nasty bladder infection. When it rains it pours.


On a more positive note, my counts continue to be very good and stable. I'm also getting some energy back and haven't slept 18 hrs a day for at least the last 4 days. I'm probably down to 12 hrs. a day. We go into the clinic a little less frequently, which is nice, especially since we now get the weekends off.

7 comments:

Jeffery said...

I believe in miracles :) and I also believe that you're still on the planet for a reason, I guess we all are.

Thanks for the lessons in patience, faith, humor and trust that you keep teaching me every day.

I love you and continue to affirm "your life is unfolding in absolute perfection with a divine plan"

Love - light and knowing!

Jeff & Merlin

Mom said...

Hang in there,Dan. You're going to make it. With both you and Mike fighting it MM has no chance. Prayers are flowing down from North Dakota. With lots of love, Mom

Steven L. Ritter said...

Up and down post. I really have come to trust what MM patients say about "their" myeloma. Everyone's MM is different and we learn very quickly how ours works. I too am keeping you in my prayers every day. I stand firm is the belief that we are doing his work until he calls us home, and we will all be called home in his time. You aren't done with this walk so keep fighting... I'll also add your wife to my prayers for health the next few days... Bladder infections..no fun..:-(

Four Winds said...

When doctors get a segment in their education called "How to Listen to Your Patients" then I will have real hope for medical progress!!
And, from my experience with bladder infections, it is my body telling me I am really "P'O'ed" and it is anger coming out... lots and lots of cranberry juice or cranberry extract needed for the next week for your wife. And maybe a walk in the park... with you now if you can do that.

tim's wife said...

Hey Susan and Dan.
I think you guys are in great shape and I'm NOT just saying that. With anti-rejection drugs, Mike's cells, at this point, are still sitting in his corner of the ring getting the shoulder rub from the coach. When they taper the drugs down, that's when the dukes come up. The fact that you are stable is fantastic at this point. The fact that Mikes' cells engrafted and are taking over making blood cells for you is nothing short of a fist pumping miracle and really where any allo patient needs to be at this stage. I have followed several allo transplants. It takes time to go into remission and I think that is DEFINITELTY a big possiblity here.
I know it's hard to be patient but this all takes time. It's all part of the process. Also, Mel didn't do anything against Tim's disease either but it is myeloblative and in that respect, that's why they used it for you, I'd bet. Even if it was not gonna knock the MM down any further, it did succeed in knocking out your marrow(along with the other drugs) so Mike's could move on in. One guy I know came out of an allo with his numbers coming up at first. Then they tapered the drugs, did the Rev.for awhile to help things along and he remains in CR today. Smile, you're doing great! Jersey hugs to ya!
Denise

sigun said...

Dear Dan,

Not great news,but not bad news either. We keep our fingers crossed for the biopsy results. Hang in there! Lots of prayers and love coming your way from Paris. Bises, Sigun.

sigun said...

Dear Dan,

Just read your blog -- thanks for explaining everything so well; as you said, a stable disease is better than a raging disease... Bises, Sigun.