What was your greatest source of suppo... - CLL America Support

CLL America Support

1,618 members467 posts

What was your greatest source of support when you were diagnosed with your CLL?

tclementi profile imagetclementi18 Voters

Please select all that apply:

9 Replies

The only support I got came from reading the medical literature and a hematology book I bought. My support took the form of knowledge.

tclementi profile image
tclementi in reply to

Knowledge is a really good source of support! For me, it helps me feel in control and know what's going on.

Shortcake2 profile image
Shortcake2

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?

Shortcake2 profile image
Shortcake2 in reply toShortcake2

How am I notified if there are answers to my comments. Sorry, I'm new here.

tclementi profile image
tclementi in reply toShortcake2

No problem, shortcake2. You should receive notifications on the top of the screen, through the little bell icon.

tclementi profile image
tclementi in reply toShortcake2

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

Shortcake2 profile image
Shortcake2

Has anyone tried essential oils,such as Frankincense ?

Annfromseattle profile image
Annfromseattle

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.

tclementi profile image
tclementi in reply toAnnfromseattle

We're so glad Patient Power is helpful to you!! Thanks for the kind words!

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.