AIHA....... watch & wait.

[Guest guest]

Thanks Carol and others for AIHA discussions. I have been watching and waiting with unmutated CLL for 4 years. Against the advice of Keating and Kipps who both rx'd tx when my white count hit around 150 I decided to keep watching and waiting as I've been functioning well. Then in April my hemoglobin dropped from 12 to 3.1 in two weeks. 6 days in the hospital, and doing better after R and high dose prednisone. My hemoglobin got up to 14 until we started taking me off the prednisone.

I wish that I had treated the CLL earlier with my unmutated status. Only God knows for sure, but...... I believe reasonable to assume that earlier tx would have wiped out the CLL cells that caused the AIHA and that I'd be dealing with a more mild beast of CLL rather than CLL and AIHA as well.

Thanks to e-mails with Carol, my hemotologist is putting me on cyclo sporin now at a low dose..... Hopefully it works.

Because the AIHA returned when we dropped the Prednisone from 80 mg/day. My doc wants to treat me with FCR now even though my white count is only 7.5. Wondering if any have an opinion on more treatment just after finishing one regiment.

The Rituximab and prednisone worked really well except that the AIHA clone is still in there some where. He feels FCR may wipe out the CLL causing the AIHA. I'm not so sure.

I just don't want to go with another form of treatment after just barely finishing the first.

Thus, I have talked my hematologist into seeing if we can manage the AIHA with cyclosporin instead of attacking the little CLL that is there now with FCR. that way we can get me off these uncomfortable high doses of prednisone. I suppose I'll have to go that route of FCR anyway when the CLL builds up again.

Bottom line.......... Watch and Wait may not be such a great idea all the time if you have more severe diagnostics............ Unmutated CLL in my case. I wish that I'd have treated myself when I hit about 150 k per Kipps and Keating.

I suppose that this is just part of the adventure of living life and the CLL journey. I don't fault myself for choosing W & W so long, but, if there's someone out there living what I lived with unmutated CLL and higher white count numbers, food for thought if nothing else. We can't return to the past, but if I could...I would've treated sooner than I did.

Also, any educated opinions about immediate FCR verses taking the approach of controlling the AIHA only?

thanks,

Leo

In a message dated 6/28/2010 4:34:07 P.M. Pacific Daylight Time, heartsong11@... writes:

It is certainly depressing to think about the CD20 being used up bydoing Rituxan or Ofatumumab. I am choosing to do the latter soonbecause other things are not working to keep my AIHA in check. Sowhat does one do? Everything we do has one risk or the other. When Ifirst was diagnosed I swore I would never do chemo. I have been veryhealthy, ate well, bla bla bla. And for 7 years after diagnosis, eventhough I had extreme fatigue that made it impossible for me to work atmy former job, I managed my life very well.Then 3 years ago I ended up with AIHA. Steroids on and off, mostly onfor 3 years, depressing my immune system, causing myopathy so Icouldn't walk at times, osteopenia, severe depression, anxiety andbouts of terrible anger and fragility. Then I did some Rituxan,probably needed more as it didn't hold. Then one cycle of PCR whichreally loused up the immune system and worsened the AIHA. And nowjust finished 5 rounds of RCD just to try to stabilize the AIHA. I'vecome a long way from wanting to do nothing! My mother died of stomachcancer and back then they had very little to work with; she hadsurgery and radiation. She didn't survive very long. Even 40 yearslater, I know that all the chemicals inside me have depressed myimmune system and I will have a shorter life because of them.I'd love to do CAL-101 or something like it that doesn't hit theimmune system like these other drugs. But so far I have limitedoptions. I have come to accept that my choices are small and since Ican't do FCR or PCR anymore (which have their own risks), I will haveto do ofatumumab or something with those risks. I panic sometimesthat I'm making the wrong decision as I did with the PCR. But I can'tpossibly know that beforehand. Everyone responds uniquely to CLL aswell as to the drugs. It's just so hard to have to make thesedecisions when what's going on is immediate. It was easier for me tosay I wouldn't do this or that when I had less acute things happening.So I try to accept where I am and even though at times it's very hardbecause I feel I have so little control, still I have to make the bestpossible decision I can, never knowing what will come of it. Carol