tag:blogger.com,1999:blog-19102494.post843000809308686414..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: My visit to the NCI, Part 3 - An enlightening meetingDavid Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-19102494.post-39251051357373899752009-02-03T07:26:00.000-07:002009-02-03T07:26:00.000-07:00The only thing which seems inevitable is the demis...The only thing which seems inevitable is the demise of the USA...how long it takes to unwind is the unknown.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-36461367016938583372009-02-02T20:39:00.000-07:002009-02-02T20:39:00.000-07:00I don't know why anyone would resist free health c...I don't know why anyone would resist free health care. I'll repeat. It's free! People live 20 or 30 years longer in free medical care countries. Only a knee jerk right-winger would oppose the inevitable.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-92016256621464965532009-02-01T21:07:00.000-07:002009-02-01T21:07:00.000-07:00MY WORD!! I can't believe I spelled Chaya's name "...MY WORD!! I can't believe I spelled Chaya's name "Kaya" in my above comment. Sorry Chaya. I have three excuses .. 1)chemo brain, 2) old age, 3) my long time racquet ball friend's name is Kaya Weaver.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-19819779909963304562009-02-01T16:26:00.000-07:002009-02-01T16:26:00.000-07:00PC's death shook me deeply and surprised me. I lov...PC's death shook me deeply and surprised me. I love PC and Kaya. I think of PC every time I use his fabulous "blood counts" spread sheet which has been, and still is, my most valuable tool. In spite of the wrenching loss of PC, I am an advocate for the transplant. As a member of that club, I see much anecdotal evidence of quality survival. Granted it is not for everyone, but at transplant savvy centers, I feel the sacles are tipped way in favor of survival over the alternative.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-23524628101427921012009-02-01T11:26:00.000-07:002009-02-01T11:26:00.000-07:00Interesting how Denny and Bob bring such different...Interesting how Denny and Bob bring such different perspectives to this. I think we all have to decide what is right for us as individuals -- so much of CLL decision-making is a matter of personal preference, of how we choose to live our lives and the risks we are willing to take.<BR/><BR/>Bob, your story is a useful reminder to me that someone has walked the path I am walking and is here to tell the tale. As much as we read statistics and try to go by logic and reason, our sense of things is often formed by personal stories, anecdotes, vignettes. I would be lying if I didn't say that PC Venkat's death has made me think twice about jumping soon, but stories like yours -- and that of my friend in Ringwood who is doing quite well against terrible odds going in -- remind me that the outcome can just as easily take a good turn.<BR/><BR/>Ultimately, when it comes to transplant, our fate is out of our hands. To proceed with one, I think one has to be ready to give up (the illusion of) control. You bite the bullet and hope for the best.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-54750428238388744532009-01-31T21:11:00.000-07:002009-01-31T21:11:00.000-07:00I relate to so much of this, and to you, as usual....I relate to so much of this, and to you, as usual. It seems like ages ago when I bit the bullet, leaving my business down south to escape lousy insurance that would not cover the recommended SCT. I relocated to CT; got a job at a big household name retailer (was that ever culture shock); waited for the insurance to vest (one year); then did my transplant at Dana Farber 4/05. My new insurer was spectacular. They assigned me a CLL savvy advocate; cut a turnkey deal with the transplant center; stayed with me through the whole ordeal; and lived up to all obligations. My fervent wish is that you can find as good an avenue to SCT if it becomes a step for you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-82172141316386039622009-01-29T15:05:00.000-07:002009-01-29T15:05:00.000-07:00I think that transplants for CLL are the modern-da...I think that transplants for CLL are the modern-day equivalent of Frankenstein's experiments. The statistics are lousy, and I think that the medical establishment is more interested in gathering more data for the future than in discouraging prospective patients with the nightmarish scenario that is more than likely to play out. I'll die the "natural" way before I let them kill me with "complications from leukemia."<BR/><BR/>DennyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-70049142061809998622009-01-29T14:49:00.000-07:002009-01-29T14:49:00.000-07:00Thanks, Lynn. I plead "chemo brain" and have updat...Thanks, Lynn. I plead "chemo brain" and have updated the post to reflect the correct year!David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-19926516968208925742009-01-29T14:30:00.000-07:002009-01-29T14:30:00.000-07:00Just past the picture of the mouse in a maze, you ...Just past the picture of the mouse in a maze, you wrote "And so, here I am, in January 2008." This only makes sense if you meant January 2009.Lynn M.https://www.blogger.com/profile/04108435081445060650noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-5657841136701096822009-01-29T06:24:00.000-07:002009-01-29T06:24:00.000-07:00Thanks David, yes I have been offered FCR and it i...Thanks David, yes I have been offered FCR and it is probably what I will choose. You're right, I am in the UK. I have discussed an SCT with cells from a matched unrelated donor. My consultant has suggested it is not the right way for me to go as I have been so ill with previous treatments. He feels the time for SCT has passed for me. He says he doesn't want to kill me off!! I also have history of heart disease which is a factor.<BR/>I have also seen top CLL expert in London. Her advice for me was RFC or Campath. Cyberhugs, SoapyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-8036249220511160622009-01-28T10:22:00.000-07:002009-01-28T10:22:00.000-07:00Soapy,As I recall, you are in the UK, so things ma...Soapy,<BR/><BR/>As I recall, you are in the UK, so things may work a little differently over there. A SCT with cells from a matched unrelated donor is much more likely to be long-lasting and possibly curative than a SCT using your own cells (autologous). Have they run a preliminary donor search?<BR/><BR/>Meanwhile, can they possibly add Rituxan to your therapy? Not only is FCR more effective than FC, the R has been shown to act against AIHA. Here in the US it is often given as a single agent for that purpose.<BR/><BR/>I agree that these are difficult choices and that we patients always want a choice. There is something reassuring about having many options open. But I think at some point in progressing disease we need to develop a long-term strategy in which we make use of those choices in as effective an order and manner as possible.<BR/><BR/>Rethinking my long-term strategy is what I am doing now; my visit with the NCI helps fill in part of the picture in terms of one possible alternative. <BR/><BR/>I'll be posting a lot more of my considerations in the near future; in the meantime, all the best to you. <BR/><BR/>DavidDavid Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-6358738792170968972009-01-28T04:32:00.000-07:002009-01-28T04:32:00.000-07:00David, I am sure that now you feel you don't know ...David, I am sure that now you feel you don't know which way to jump? I was originally thinking of a stem cell transplant, but at that time they couldn't get any cells from me. I was upset, it wasn't that I wanted a transplant, what I wanted was the choice. As someone who has done FC for 6 months, then FC ending after 2 cycles in sepsis, Campath and in relapse again with AIHA, I have been advised to try FC again (!) or Campath again.<BR/>The question is - what to do? What a difficult decision for you. Thankyou for your excellent, informative blog. SoapyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-45463261855328764282009-01-26T14:47:00.000-07:002009-01-26T14:47:00.000-07:00I don't know if the second comment was a joke, but...I don't know if the second comment was a joke, but would point out that any program that places healthcare spending under government aegis necessitates cost controls (controls that have never successfully been implemented with Medicare) which in turn brings up the issue of healthcare rationing. No one can say for certain how this will be implemented, but governmental agencies akin to the UK's NICE are a distinct possibility...and costly procedures of uncertain outcome in older people are less likely to gain approval than more mainstream medical care.<BR/><BR/>It is ironic that legislation was passed years ago to "contain" Medicare costs and never followed. Each year congress has passed "emergency" legislation to turn back the proposed cuts in reimbursements. My belieef is that physicians would grouse about it, but very few would cease to care for Medicare patients.<BR/><BR/>We'll see what happens<BR/><BR/>11qRickAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-68809173905061613082009-01-26T03:22:00.000-07:002009-01-26T03:22:00.000-07:00DavidThanks for the latest posting. The informati...David<BR/>Thanks for the latest posting. The information you provide is very informative. My partner is only 39, nearly stage 2 CLL. <BR/><BR/>We have all this to come.<BR/><BR/>Keep up the postings and thank you.<BR/><BR/>Kindest Regards from AustraliaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-72757985696861230462009-01-25T20:39:00.000-07:002009-01-25T20:39:00.000-07:00Don't worry about health care! Obama will make al...Don't worry about health care! Obama will make all health care free. I'm sure whatever health care you want, will be available, no matter how expensive.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-51028121733499963972009-01-25T16:49:00.000-07:002009-01-25T16:49:00.000-07:00David,You write so well that I wouldn't begin to w...David,<BR/><BR/>You write so well that I wouldn't begin to write specifically about my visit last week to discuss the issue of possible HSCT... but I will point out that save for the characters involved, the disussion was essentially the same...almost as if I had taped my visit and you, in turn, wrote about it.<BR/><BR/>These are very difficult choices indeed!<BR/><BR/>11qRickAnonymousnoreply@blogger.com