Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Jerry - welcome - the theory several years ago would have certainly been watch and wait, with your counts and symptoms - Lately, the idea of "prognostic indicators" has begun to play a big role, and oncologists are deciding on the basis of these whether one is a "slumberer" or whether the prognosis is not so great and earlier treatment is warranted - In my very personal opinion, your indicators are not very scary, and my instincts would be to wait - However, you have to make the call, based on the docs and YOUR OWN FEELING - Dana Farber is certainly excellent. MD are generally aggressive, and I doubt you will come away from there with anything but a "treat" conclusion. - MDA usually treat with Fludarabine+Rituxan+Cytoxan, not an easy regimen, they have been successful with it. Lately on this group there has been a good deal of dialog about Chlorambucil, in careful dosage, with or without Rituxan. Europeans treat this way a good deal, although points out that Chlorambucil can also be toxic. I would ask your doc about this alternative, but be careful of dosage. Monotherapy with Rituxan is more and more used now. Did they determine in pathology what CDs you have expressed? A good expression of CD20 is a very favorable indicator for taking Rituxan. In any case, you certainly do not need to rush, take your time, and make a well evaluated decision. Good luck, Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Thanks for the insight,. You raise some excellent points and this gives me something else to ponder. As far as the CD20 marker is concerned. My pathology report indicated it's at DIM 5%. I'm not too sure if this is even enough for Rituxan to be effective. Maybe Campath or another trial Monoclonal would make more sense. Thanks again for the site and I will review and jump in whenever possible. Stay positive everyone! > Hi all- > > This group has been comforting to me as I read about other CLL > patients and what their game plan is. at CLLtopics.org is also > another very helpful site for researching this disease. After my > diagnosis on 9/11/03, the first thing I did was research and educate > myself as much as possible. That being said, I still feel > overwhelmed at times. > > I'm 38 years old, my most recent counts are: WBC 42.2 / HCT 39.4 / > HGB 13.7 / RBC 4.62 / Poly 12 / Lymphs 86 / Monos 1 / Absolute > Lymphs 36.37 / Mi Beta2 2.9 Only sign is swollen nodes throughout > my body (1-1.5cm) > > I also had a FISH test done, but my oncologist said it was mixed > (some good deletions and some bad e.g., 17P deletion in 9 out of 10 > nuclei **I know this is correlated to a P53 deletion, but is 9 out > of 100 hi or low?? > > I'm leaning towards a Rituxin only first line treatment, but my > Oncologist in Boston is of the mentality of wait and then treat with > Chemo/Rituxan... I was on a cruise last week with my wife. I was > treated by the ship Dr. for another matter. We started discussing my > CLL and he informed me that in the UK, I would already be in > treatment (no watch and wait). Suffice it to say, this even clouds > my thinking even more. > > I am seeing another Dr. at Dana Farba next month and maybe will > travel to MD in Houston as well. Does anyone have any > suggestions with what might make sense for me with respect to > treatments, waiting, etc? > > Many thx to all and keep your attitude up! > > Jerry > Dx 9/11/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Jerry - Campath can be tough - Don't jump into that unless you're pretty sure - sometimes given subcutaneously, that's supposed to be easier to take - most docs give Campath as a second choice, or after a primary treatment as a "mop-up", to achieve a fuller remission. - My understanding is that it is not a very easy drug to take. - Good luck, keep in touch, Balan Quote Link to comment Share on other sites More sharing options...
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