Tuesday, April 18, 2006

Confused Again

Well, I am a little bummed out, a little confused and a little ticked for the first time with my doctor. Also, back on steroids of course . (Even took my Ambien three hours ago and still wide awake.)

Today, actually Monday because it is now 3 a.m. on Tuesday, was my fifth round of chemo. That went fine as usual except my heart rate got too low for the chemo nurse -- in the 40 bpm range which made her machine beep every time -- and some restless leg, more of a restless feet, syndrome. She said next time we will do the Benadryl by pill instead of infused and along with not taking my blood pressure medicine the morning of chemo, I now won't take my beta blocker, Tenormine, either. I take the blood pressure med and the Tenormine to keep my heart rate down. Without them my heart rate is 150 or above, even when sleeping. I have been taking this combo for 20 years and it keeps my pulse rate in the 60 and 70 bpm range. I slept through the vast majority of the treatment and didn't even hear her change the last three bags and Cheryl said I snored through BP and pulse readings, too. She said I snored louder than she has heard me since I lost all that weight a year or two ago. I am sure THAT pleased all the others in the infusion room. Maybe that is why when I woke up there were no other patients left.

However, I am upset about the doctor visit before the infusion. I had blood work first as usual. As you know from previous postings, I have been very pleased with the progress so far. Well, the first thing he said was, "I think we need to stop the treatment, do a bone marrow biopsy because I think we have plateaued and you are only getting a partial response. Then if the bone marrow biopsy still shows 50 or 60 percent involvement, as I suspect, we need to change treatment to CHOP or FCR." (When we started the marrow was 90% infiltrated) WHAT??? I told him I thought we were getting a great response because my nodes had disappeared, my WBC and Lymphocytes were in the normal range. He said that is true, but my platelets aren't coming up and the Lymphocyte percentage is still 57 percent (at least I thought I heard 57, but it is really 52.6% and I didn't have a copy of today's test, yet) . I was shocked and went into my "no Fludarabine" speech about the long term affects they are seeing and the chance of Richter's transformation. He basically pooh-poohed that and said it would be a waste to keep going with treatment that isn't working. He then said I had to be careful about all the internet research I was doing because you can always find anything to support your position and FCR has had great results. I told him I knew that FCR got great results but I was researching legitimate sites that quoted actual CLL research documents from respected doctors. (I am going to find a bunch and email them to him tomorrow. I hope he reads them.) We bantered for 10-15 minutes about this. Anyway, bottom line is he is again going along with what I want and I will finish up with the one more round scheduled for three weeks from now, May 8th, then do the BMB (which I will insist be done by conscious sedation). I hope and pray the marrow involvement is way, way down. Cheryl wants me to listen to him because he is the one with all the diplomas on the wall. True, but I also know from reading in the CLL forum and other lists that doctors are not the all-knowing OZ and some are down right scary. Although I respect him, I can't put blind trust in him. Remember he wanted to treat immediately a year ago.

My daughter, Cindy, who is more supportive of my research, suggested that maybe I go back to Dr. Weirda at MD Anderson, do the BMB there and see what his opinion is. I was due to go back to see him in May of this year after he put me on watch and wait last year in May. That might not be a bad idea.

Here are today's blood results:WBC - 5.4; LYM 2.8 & 52.6%; *MID 0.3; GRAN 2.2; RBC 4.31; HGB 13.9; HCT 41.9%; MCV 97.2; MCH 32.3; MCHC 33.2; RDW 14%; PLT 93; MPV 10.1"
*MID cells may include less frequently occurring and rare cells correlating to monocytes, eosinophils, basophils, blasts and other precursor white cells."

Now this is a different lab from the tests from a week ago. But, the ONLY ones out of this lab's range are MCV, high by .2; MCH, high by .3; and PLT obviously low by 47. So how the heck can he say it isn't working when EVERYTHING else is in the normal range???? Even the Lymphocyte percentage is within his lab's normal range of 10.0 to 58.5%.

Told you I am getting grumpy.


Karen said...

Way to stick to your guns! On my blog, I once mentioned a friend who has had two heart transplants. He told me that when it comes to doctors, to always remember "you are the boss of what happens to you!" I've never forgotten that. If I had gone along with what one of my doctors wanted last winter, I'd be having a bone-marrow transplant right now! After getting other opinions and doing lots of research, it turned out I needed NO treatment for now. (Needless to say, I have never gone back to that doctor!)

And good plan getting the sedated BMB! That's the only way to go, espcially if they give you cookies afterward. :)

DavidE said...

We're with you...I like th eMD Anderson path myself?

You mentioned Grumpy, Sleepy and Doc; what about the other four dwarves?


Terry Hamblin said...


It looks as though you have a good partial remission. You need to think about what are the aims of treatment.

Melissa O'Mara said...

Hi John,

Melissa O'Mara here. I understand your frustration. We were in a similar predicament when Dan was halfway through RFC (on the MDA protocol under care of Dr. Weirda, for whom we have incredible respect). They were going to take him off the clinical trial b/c they felt he was not having an acceptable response. We pushed to keep going as well, partially b/c we could not deal with much else mentally, I was 9 months pregnant at the time. And we were in denial, we did not want to lose the hope of RFC doing the trick. Unfortunately for us, Dan did not achieve remission. In fact, overall, his nodes increased during RFC (although the visible neck nodes came down, each month, but came back up a bit before then next round). His marrow had a minimal response, maybe from 93% to 89%. He took 3 months off, while we started the donor search, and started hyper cvad in the fall.

I don't say this to discourage you. I know you know Dan's story well - and his has not been "typical". Mostly I wanted you to know that we understand the frustration of being told that you might not be getting the response you want, and also to let you know about Dan's disappearing and reappearing neck nodes. I guess that should have been a clue! I don't recall his platelet counts, and if they recovered in between.

Dr. Weirda is generally very responsive to important e-mail, and it might be worth running by him via e-mail... just a thought...

On a different note, thanks so much for your support of Dan and our family on Dan's caringbridge site. He is sitting next to me on his hospital bed - doing MUCH better, and hoping to go home soon!

Take care, and we'll be following you, and sending positive energy your way.


Paula and Earl said...

John: We don't have any wonderful insights or clinical information, but we do care, and we will be praying that you will have the clear signs that you need, as you make decisions. MD Anderson sounds like a good resource as you try to make up your mind what to do. Hang in there. We love you and Cheryl.

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...
This comment has been removed by a blog administrator.