New here. After 10 years of CLL, Ibrut... - CLL America Support

CLL America Support

1,649 members470 posts

New here. After 10 years of CLL, Ibrutinib treatment needed for decreasing hemoglobin and platelets.

G_A_L profile image
5 Replies

I have avoided any treatment so far but extreme fatigue fluctuations have drastically restricted daily activity such as walking, cooking, gardening etc. It's been a gradual progression and now I want some energy back so I can stay independent. Last summer I also acquired a severe allergic reaction to mosquitoes. Has anyone else developed this? I had been offered chemo many times but the side effects stated in research were more than I was willing to experience. Now Ibrutinib will necessarily be my first treatment. Can hemoglobin be increased with diet? ... low carb, increased foods with iron? I'm afraid of the many side effects that could be coming... when I start. I wish I could say, if I start but with decreasing hemoglobin and platelets, it's Ibrutinib or eventual blood transfusions. I am grateful for this forum.

Written by
G_A_L profile image
G_A_L
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Jm954 profile image
Jm954

Hi, this site is closing down.

You may want to consider joining CLLSA on HU, it's the biggest on line community with more than 12,000 members and a wealth of experience.

Here's the link: healthunlocked.com/cllsupport

Smakwater profile image
Smakwater in reply toJm954

To bad patient power went to Facebook.

I dropped Facebook last October, because it became a job just to avoid divisive political toxicity.

Promote Hope not Hate.

JM

G_A_L profile image
G_A_L in reply toSmakwater

I agree, completely. I can access my facebook account but I would only read the items and not make comments as Facebook mines data from Facebook users. Then again I will continue with to access CLLSA as it is an excellent site.

cath910 profile image
cath910 in reply toG_A_L

Hi How do I sign up for CLLSA. I have CLL since 2013 no symptoms yet but want to be prepared

Would appreciate any info I could get. Thanks

G_A_L profile image
G_A_L in reply tocath910

Hi cath910,

The site link is healthunlocked.com/cllsupport. In the top right corner there are two boxes one says Follow. Click on that and you will be good to go. If anyone has a different suggestion, that would be helpful.

GAL

Not what you're looking for?

You may also like...

My Cll progression

Hi have been on wait and watch since 1908 my WBC has increased and platelet count is dropping....
Ninagram profile image

Good News from the Doctor Venetoclax is working!

I started my Venetoclax journey September 7th. A few bumps on the way up from 20mgs. to 400 mgs....
ReneeSusan profile image

CLL diagnosis and diet

was Diagnosed with CLL a day after my 60th birthday party. I hadn't been feeling well for months. I...

Choice of doctors

Ok so I've got a real dilemma. I'm on W&W. I have two top CLL specialists in two sister hospitals....
JerrysGirl3 profile image

Hubby about to begin Obinutuzumab infusions....feeling anxious

Aloha! My husband (age 74) was diagnosed with CLL back in 2003 and had eighteen years of zero...
keikikumu profile image

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.