NIH CLL Clinical Study
Fairly recent CLL dx, Stage 0 RAI. In process of joining NIH in Bethesda, Maryland long term tissue study for CLL. Would love to hear of experiences with other CLLrs involved in this study.
I'm heading to NIH for first appointment with natural history study on Wednesday, June 20. I've heard from several people that it's a great thing to do and that Susan Soto (lead nurse) is a lovely person. I'll be curious about your experience and glad to let you know how it is for me. I'm also new to this and Stage 0 (13q, unmutated), but eager to understand how to live better in W&W.
Thank you. I go July 13 for first visit. Keep in touch
I just return from my visit June 8th. It was a good visit, I am stable. I have been enrolled since 2009 and I am still on w&w. The Doctors and nurses are great! I am stage 2, mutated, 13q all good markers.
Thank you. I am new to this and did not know you could be w and w at stage 2.
Staging in CLL is a bit different from other cancers - it's more a measure of how extensively the CLL has affected your body, rather than a firm indication of when treatment will be needed. Due to the chronic nature of CLL, it's possible to stay in an advanced stage for a very long time without needing treatment and conversely, need treatment fairly soon despite being in a lower stage, due to the way it can suddenly take off. The uncertainty of knowing if/when treatment will be needed is one of the psychological stresses of living with this condition. I've been in watch and wait stage IV for 9 years...
Thank you Neil you're a good teacher👍👍
Read good information on good sites like Healthunlocked will help you understand and live better on w&w. Also it gives you confidence when you go to the doctor, you will know what to ask and what the doctor is explaining.
to this study, which are clearly outlined, but it is an interesting look at the impact of CLL on younger...
Truthfully I would like to knock my disease down, but docs will not treat low risk CLL patients unless...
patients. For Rai Stage 0 and 1 CLL, untreated, SLL Stage 1 http://clinicaltrials
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