Newly Diagnosed, W&W, yearly visits?

[Freeskier989]

Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know that these are all favorable prognosticators but i do not know my IGHV mutation status, so do you think that a yearly visit is enough? I am planning to follow up with a CLL specialist, and even ask my primary doc for a CBC w/ diff at 6 month interval to check progress, but was curious what you all thought. Thank you-

[lankisterguy Volunteer]

Hi Freeskier989,

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That sounds like a great plan to me, but you will get the best input from the CLL Specialist. So you may want to push for that sooner vs. later.

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You may also want to follow these suggestions: cllsociety.org/toolbox/buil...

Having a team of cancer experienced doctors like a dermatologist, cardiologist, pneumologist, etc. can also help you deal with all the curve balls that CLL creates.

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And get all your vaccinations up to date: healthunlocked.com/cllsuppo...

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And please check out these ideas: healthunlocked.com/cllsuppo....

Especially #3 and #12

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Len

[GMa27]

From day one I saw my hematologist every 4 months. A year is not usual. Definitely need to know ur mutation status. I am 13q mutated. Felt fine for all 12 years on W&W. Treatment done and in remission 2+ years. FCR chemo was uneventful.

Hopefully you are mutated.

Best to find another hematologist. If you can get a specialist that would be great. If too far you can use local and have specialist if you have any issues. I didn't use expert till treatment was mentioned in my 11th year. 💕

[AussieNeil Partner Administrator]

ZAP70 and CD38 negative correlate with around a 60% likelihood of being IGHV mutated, which I expect is why your oncologist said it would most likely be 10-15 years before you would need treatment and has scheduled your next appointment in a year.

However, establishing a relationship with a CLL specialist and arranging a CBC with a WBC differential at 6 monthly intervals are well worthwhile. If you are indeed IGHV mutated, also being 13q del certainly puts you in good stead of meeting your oncologist's expectations.

Neil

[lexie]

I have the same markers as you, but do know I am mutated. Within a week of diagnosis in 2015 I made an appointment with a CLL specialist. My reasoning was to get established early with the specialist in case something unexpected came up. Then he would have all my background to act quickly.

I also was told it can take months to get an initial appointment with the specialist so I got right on it. As it turns out I was seen in only 2 months instead of 4-6 months because of a cancellation. Some have a faster initial appointment from what I have read, though.

Still in W&W, stable in the teens, stage 1-2. I have annual appointments with the specialist but see a local hematologist recommended by my OSU specialist for 6 month blood tests to keep my foot in the door for local intervention. So to sum up. I am seen by someone for CLL every 6 months. If I lived closer to OSU it would simply be annually.

[janvog]

You can never go wrong watching and observing your health and healthcare! Better to concentrate on optimal nutrition and daily exercise and mental auto-therapy (music, humor, intellectual challenge), then wondering about the vast complex of genetic markers and scientific data which requires years of proper studies. However watchfulness is important about which medical professionals attend your care. After 12 years "watch and wait" with CLL, two years ago I had suddenly Stage 3 . My hematologist gave me option of 6 month' chemo - or the daily pill of IMBRUVICA: After one year on IMBRUVICA my CBC was close to normal. Now after two years of IMBRUVICA my CBC is almost normal. But I have optimal nutrition (salmon, vegetable, fruit, non-fat yogurt ) and walk (indoor treadmill) and climb steps (15 floors) daily. The muscles seem to be important for the absorption of targeted therapy, plus exercise requires oxygenation.

[wizzard166]

A year is a bit too much at this point. When I finally crossed the threshold of 5000, the FISH and Flow Cytometry enabled the full diagnosis. At that point I went on every six month visits with the Hematologist. I too think once a year is too long

[Lisa-1959]

I guess everyone is different (I have the same markers as you do...also know I am mutated), but for 10+ years, I only had annual visits with my oncologist, and that worked out fine. It wasn't until my white cell count went over 50,000 that I started going in every 6 months. I was actually on W&W for almost 22 years before starting treatment, so a long W&W is very possible!