NIH CLL Clinical Study

[Friverapt]

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.

[lynnsb6754]

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.

[Friverapt in reply to lynnsb6754]

Thank you. I go July 13 for first visit. Keep in touch

[lynnsb6754 in reply to Friverapt]

Will do.

[kathyg]

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.

[Friverapt in reply to kathyg]

Thank you. I am new to this and did not know you could be w and w at stage 2.

[AussieNeil Administrator in reply to Friverapt]

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...

[Sushibruno in reply to AussieNeil]

Thank you Neil you're a good teacher👍👍

[kathyg in reply to Friverapt]

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.