What was your greatest source of suppo... - CLL America Support
What was your greatest source of support when you were diagnosed with your CLL?
The only support I got came from reading the medical literature and a hematology book I bought. My support took the form of knowledge.
Knowledge is a really good source of support! For me, it helps me feel in control and know what's going on.
I really didn't get any support. The info I got came from the Internet. I was diagnosed 1year ago, which ironically was the same day my 38 YO niece went on Hospice from brain rumors. She died 2 wks later, the day before my first Oncologist appt at MD Anderson, Houston TX. I'm still on watch and wait but by white count spikes and then it goes back down. I have fatigue like crazy. My lymph nodes swell off and on all the time. I have a hard time breathing sometimes and my voice gets weak. Are these common issues?
How am I notified if there are answers to my comments. Sorry, I'm new here.
No problem, shortcake2. You should receive notifications on the top of the screen, through the little bell icon.
Hi Shortcake2, these are common issues. Have you watched any of Patient Power's CLL videos? They might be helpful to you- patientpower.info/chronic-lymphocytic-leukemia
Has anyone tried essential oils,such as Frankincense ?
I received support from my friends and family but this site is so positive with prognosis etc. this site made me feel the best! Initially, I went to see a CLL doc and he told me the prognosis for CLL was 10 years! I have the Q13 and no other or minimal cd expression etc. I changed docs and he said my CLL was mild and the 10 year prognosis was wrong! This information seemed to be what was reflexed on this site so I thank you! If it wasn't for this site then I wouldn't know any different.
We're so glad Patient Power is helpful to you!! Thanks for the kind words!