Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Just a comment that timing of treatment seems an important question and guidance is needed -- assuming instinct about its importance is confirmed by evidence and basic knowledge - that waiting too long can matter, as might treating too early. With such guidance patients will be given an important role in clinical decision making. My concern is that some may be waiting too long too often, as feels he might have. Anyhow, it would be nice to get more input on this question from experts in various ed forum ... and perhaps how we might begin to account for the impact of timing of therapy on outcomes in clinical trials. Karl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Thanks, . Hope things become stable for you soon--or as much so as possible. I promise I won't wait too long. On Saturday, July 25, 2009, at 02:26 PM, S. wrote: > > > > I wouldn't wait until weight loss, night sweats, or other B symptoms. > I never had weight loss, and the only night sweats I've ever had were > during treatment. > > I followed the advice of a CLL expert doc. > > My opinion is that tracking the absolute lymphocyte count on a > spreadsheet or a graph will pinpoint when the CLL is starting to make > its move. I'd consider treatment then or at least ask the doc. > > My CLL expert doc tracked the growth of the numbers. They were > steadily, but slowly increasing. Suddenly, they took off like a > rocket. Obviously, something happened. Perhaps I acquired a more > aggressive mutation. > > In any case, don't wait too long. (I did, even though my oncologist > and I knew treatment was needed. I wanted a particular trial, and that > trial took almost a YEAR before it opened. I don't know why he sat by > and let me wait that long, to be honest. I should have been treated > earlier. By waiting, I acquired the 11q deletion, and have been > struggling ever since.) > > You are at an early stage and I don't think you have to worry about > treatment soon. Just be sure and track your ALC numbers. Sudden > departure from the previous indolent cancer should be obvious; it was > in mine. > > Original message: > > > > > Re: Should I participate in CLL study? - > > > I am gathering from Dr. Furman's excellent post below that the grounds > > for deferring treatment are shakier than they once were, and that > > testing for IgVH mutational status, while not foolproof, is the best > > indicator of whether the disease is aggressive or not. > > Is that right so far? > > I've been untreated for over 6 years. The WBC and ALC numbers are > > climbing slowly and there is some not-very-worrisome nodal enlargement, > > which was recently checked by a CT scan. No symptoms. My new > > hematologist calls me Stage 0; when the lymph nodes were noticed almost > > a year ago, that hematologist moved me to Stage 1. (You pays your money > > and you takes your choice!) > > So, though apparently I was never tested for mutational status (CD 38 > > negative, likewise Zap 70), is it fair to assume that it's probably the > > favorable status, and that in my case W & W is the way to go? Has enough > > time elapsed since diagnosis so that I can simply wait for symptoms > > (night sweats, weight loss, etc.) before considering treatment? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 What I come away with from all this is: More can be determined, perhaps, about what to treat with (when the " time comes " ) than about when to treat, which still seems to be a judgment call. I'm still in the dark--maybe most people are--about what harms various treatments themselves can cause, and how to balance those harms--which are often not known beforehand--with what harms might be caused by not treating. I wish there were a way of knowing more about that balance, but I'm afraid that covers a huge area of unknowns. As I say, it seems to me it's still a judgment call. My only fear is that there's not yet enough experience on which to base the judgment in order to make the call. On Sunday, July 26, 2009, at 08:22 AM, karlamonyc wrote: > > Just a comment that timing of treatment seems an important question > and guidance is needed -- assuming instinct about its importance is > confirmed by evidence and basic knowledge - that waiting too long can > matter, as might treating too early. > > With such guidance patients will be given an important role in > clinical decision making. My concern is that some may be waiting too > long too often, as feels he might have. > > Anyhow, it would be nice to get more input on this question from > experts in various ed forum ... and perhaps how we might begin to > account for the impact of timing of therapy on outcomes in clinical > trials. > > Karl > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 , You have said it very clearly on your post "what to treat with (when the "time comes")". I am an example of not wanting treatment, but it was mainly I did not want the treatments offered or suggested. I was and still are a very stubborn person, following my own instict, however I do listen to the experts and have tried to learn and understand the different treatments available. I waited to treat until I got what I thought it was best for me, I had the least posible toxic damage with treatments in my body and kept a very healthy life even during the time I had marrow failure. Having accepted the fact that non of the treatments worked for me and accepting the posibility of palliative treatment after 6 years of living with CLL, I was then offered to go through the transplant route on the basis that even at my age I was a very healthy person, of course apart from CLL. Like , I do not worry about my CLL, although I am always very well informed. Now that the tests showed there is no CLL in my body, I find hard to sink in, after so many years of discusing what to do after each treatment failed to give me a complete remission, I was sort of expecting the same thing with a SCT, I know 4 months is early days, but being seen at the clinics every 2 weeks is just amazing freedom. regards Chonette (UK) Chonette dx 10-02 (aged 57)unmutated, CD38 19%, ZAP70 9%,2004 Prednisolone 8 weeks 50 mg. a day,2005 Prednisolone 8 weeks 50 mg.a day, followed bylow doses chlorambucil (2 mg.),2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14 daysoff) 6 rounds,2007 Low doses Rituximab,2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)Partial Remission, multiple pea size nodes on neck,Started 16 week Campath/HDMP Protocol in June 2008, to follow SCTCMV activation plus two other infections end week 8th of Campath.Hopitalised for 4 weeks. 2 months gap to allow body to recoverDec 2008/Jan 2009 - HDMP to reduce nodes, bone marrow clean - no more Campath neededAdmited to The Royal Free Hospital 15th March, SCT March 24th following Prof. McKinnon's protocol.Feeling well 4 months post transplant with good engraftment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Hello, Is Rituxan or other treatments that are less than full chemo helpful for those of us in early stages of CLL who experience fatigue, painful (uncomfortable) nodes, slow healing, bone pain, etc.? Is it harmful in the long run? These symptoms have become more prevalent (on average) since being diagnosed in 2008. My WBC is still low but has risen from around 12-13 to 19 within a 6-month period. Being able to work (at a job that does not require a lot of physical effort but is mentally stressful) is doable but sometimes difficult (like going to work with a mild case of the flu). At 53 I still have a few years until retirement but would like to increase the quality of my life; however, I don't want to start treatment too early. In summary, I would really like to increase my quality of life but don't want to close the door on future treatments. My present status is able to work (sometimes barely) and (70% of the time) don't have enough energy to do much else. Any help, including personal experiences of anyone who was in the same situation and had treatment that was less than full chemo, would be greatly appreciated. Thanks, R (Poconos, PA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Hi I had treatment with single-agent Rituxan after 3 years of w & w. It was very helpful for me: restored much energy & shrank the nodes back to near-normal. I didn't have a WBC problem at the time (that came a few years later.) Effects lasted 3 years. Risks in the long run with continued use include immune suppression; I have not experienced it from Rituxan. (Fludarabine is another story!) Just a story of one. Good luck - SLL dx 10/2001 > > Hello, > > Is Rituxan or other treatments that are less than full chemo helpful for those of us in early stages of CLL who experience fatigue, painful (uncomfortable) nodes, slow healing, bone pain, etc.? Is it harmful in the long run? > Quote Link to comment Share on other sites More sharing options...
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