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

CLL America Support

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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.

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G_A_L profile image
G_A_L
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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

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