Watch and wait is awful

[NANACAROL]

I was first diagnosed with cell in 1996 I was 48. It was scary. Watch and wait began. Each doctors visit whites weee up but that I found is not the only thing doctors care about. A lot has to do with size of nodes how you feel sweats etc . I kept getting sick pneumonia, lung cancer, flu, etc. I wasn’t treated for another 3 years. Then it was because I was so run down and lymph nodes and spleen got big. I was treated then with rituxin and fludarabin I went into a 10 year remission. I handled treatment well but got regular therapeutic massages throughout whites always lower after massage. Another 10 years of a sort of remission counts started going up

Platelets down sweats nodes, spleen getting bigger, not until I lost 20 lbs did I start treatment. I am now on ibrutinib for about 9 months everything counts spleen sweats etc. all much much better. There are some side effects for me(not all get same) not awful mostly handled with meds as needed but wbc 68k down from 175k platelets up from70 to 100.

Watch and wait is HORRIBLE like watching a thief in your house waiting to see what he will steal. I am good now and all of you keep hope treatments so much better than when I was 1st diagnosed. I need to start getting those massages again.

[Shedman]

Thanks for sharing a positive message - my parallel journey began this year with diagnosis.

I often think about massage - in the shower I always wash my arms and legs upwards towards the heart, as likely best for draining lymph and tissue fluid, also good for veins. Massaging neck lymph nodes is fine, but my letter armpit became really sore -- there are a lot of lymph nodes on that side (we are not symmetrical!)

What do you tell the therapist before massage?

"Gentle therapeutic massage please - don't put effort in to lumps and bumps; they might be lymph nodes!"

Massage needs adding to my monthly regime, as it feels likely beneficial, and is so relaxing.

[NANACAROL in reply to Shedman]

Told the therapist what I had and she took it from there. Did not rub hard but with some pressures. If you can find a good one they will know what to do

Good luck on your journey. My prayers are with all on health lock.