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Leukemia

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I Was Diagnosed With Chronic Eosinophilic Leukemia About 2 1/2 Years Ago. Been On Hydroxyurea Ever Since.

I Was Diagnosed With Chronic Eosinophilic Leukemia About 2 1/2 Years Ago. Been On Hydroxyurea Ever Since.

CEL must be rare. I have not seen where anyone else has it. Right now my worst reaction is extreme itching. I take two
prescriptions for itching daily. Plus, I use Sarna Lotion and CeraVe lotion daily. I am hopeing for more relief somehow.
Any suggestions that have been successful for others with CEL would be welcomed.

A MyLeukemiaTeam Member said:

I also have a gene mutation that caused my CEL. Have you been given medication. I take Hydroxyurea - 1000 MG for 6 days and one day at 500 MG.
Itching… read more

posted 4 days ago

What Is The Best Way To Get Relief From Pain Caused By Mouth Sores?

What Is The Best Way To Get Relief From Pain Caused By Mouth Sores?

My daughter has horrible mouth sores caused from methotrexate. How can we treat these and avoid them in the future?

A MyLeukemiaTeam Member said:

I found baking soda for tooth paste helped along with a water pick and diluted mouthwash helped. Weirdly, drinking Ensure helped a lot. It helped to… read more

posted 10 days ago

Hi Has Anyone Been Put On Blincyto My Daughter Started It Yesterday

Hi Has Anyone Been Put On Blincyto My Daughter Started It Yesterday

Chemo stopped working numbers aren’t where the doctors want them to be so transplant is on hold

A MyLeukemiaTeam Member said:

That’s great! The first round I went through I could barely walk and lost 40 lbs. food all tasted like metal. At a low dose I was fine. When they got to… read more

posted 3 days ago

Cll And Side Pain

Cll And Side Pain

Hi, I was wondering if anyone has had any side pain under my right breast, there is a hard area....didn’t know if this was related to my liver....my Dr appt isn’t for another 2 weeks...

A MyLeukemiaTeam Member said:

Call your Onocologist/Hematologist, that's what they are there for.

posted 11 days ago

Intestinal Distress Following Conditioning Chemo?

Intestinal Distress Following Conditioning Chemo?

Hello, I'm Day +6 post-stem cell transplant, seven days after conditioning chemo ended. Experiencing severe abdominal cramps, interfering with sleep, and frequent diarrhea. What have you done to alleviate this?
-- Brian

A MyLeukemiaTeam Member said:

I did experience Bad diarrhea also after my transplant. Imodium helped. Eventually, it did get better. Make sure you keep hydrated.

posted 29 days ago

ALL And Relapse/secondary Cancer

ALL And Relapse/secondary Cancer

Does anyone have B Cell PH- ALL with an allogenic BMT as treatment? Did you relapse or acquire a secondary cancer? My mind is sometimes consumed by the thought of getting cancer again whether it be the same or a different one altogether. I guess I'm wondering about the odds of it happening.

A MyLeukemiaTeam Member said:

I had AML and an allogenic BMT transplant 11 months ago. I am in remission, but yes, the thought of relapse or another cancer always lurks in the back… read more

posted 2 days ago

CML

CML

Has anyone taken tasigna? If so what side effects are you having or had and do they ever ease up or disappear. I start this pill next week and I'm scared. I was diagnosed in July 19 with CML and was on sprycel but had so much fluid retention got lots of fluid in my lungs so my doctor took me off of it. I was lucky though in a short time with sprycel my numbers went down to undetected and that was the only side effect. But man what a bad side effect. Feels like your drowning. Any help is appreciated.

A MyLeukemiaTeam Member said:

Hi RandeeRice you sound like me I also. Filled up with fluid from sprycel. Then they put me on tasigna well it wasn't good for me either, everyone is… read more

posted 2 days ago

Chronic Pain Due To Long Term Side Effects.

Chronic Pain Due To Long Term Side Effects.

I was dx with ALL in 2007. 3yrs of treatment. Was absolute hell. Lots of pain before, during and post treatment. My question is; Has anyone continued to experience moderate to severe joint, spinal and neuropathy pain that did not go away after tx and instead got worse as time went on. I'm 10yrs post treatment now and have had a lot of damage to my lower and thoracic spine. Both the vertebre, discs and the cord it's self. I had a Nevro hf 10 Spinal Cord Stimulator placed… read more

A MyLeukemiaTeam Member said:

Oh I feel for so bad for you Robert &Camliaann43 . There have been so much abuse the drs. Are afraid to order pain meds because theyll get in… read more

posted 2 days ago

PLEASE READ THIS QUESTION!!! Who Has/got A Terrible All Rash All Over Their Body!!

PLEASE READ THIS QUESTION!!! Who Has/got A Terrible All Rash All Over Their Body!!

My 1st phase of feeling bad with CML was bruises, not sleeping, really dizzy.
The WORST!!! I got a rash on my arms, back, chest and upper legs. I can deal with not sleeping, being super dizzy, not being able to remember anything, not being able to eat etc. BUT, the rash has tormented me for 5 months. I'm pretty tough, and keep focused, but this is beyond description! I was put on steroids, but told I can't stay on them. I went to… read more

A MyLeukemiaTeam Member said:

I feel for you so sorry. I have extremely dry skin. I just got off steroids, mine was caused by poison oak. What chemo pill are you taking? It might be… read more

posted 2 days ago
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