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Leukemia

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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:

You may have an enlarged liver. I have constant pain on my right side, under breast and tender @ rib cage.

posted 17 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 about 2 months 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 24 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 24 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 24 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 24 days ago

AML Long Term-UNC Hospitals Molecular Genetics Laboratory

AML Long Term-UNC Hospitals Molecular Genetics Laboratory

I have AML diagnosed Oct 2017 and have been on a chemotherapy drug of Dacogen every 28 days since. This is year three and my NPM1, QUANTITATIVE TYPE A, NPM1 mutant RNA: Positive at 2 transcripts per 10,000 cell equivalents in blood. This result suggests the residual presence of leukemic cells containing an NPM1 mutation. This low-positive result is similar to previous results for this patient since October, 2019.

Is it time to consider SCT. I am scared to… read more

A MyLeukemiaTeam Member said:

Cheryl, always good to hear from you. Congrats on the year celebration. I am praying and hoping for you to celebrate many, many more happy years. Our… read more

posted about 1 month ago

Imbruvica Use

Imbruvica Use

I have been on Imbruvica for about 1 month now for CLL. When my WBC count hit 68 in mid March 2020, the doctor put me on it. 2 weeks after starting the drug my WBC count was 95. Today I had another blood test and it is up to 111. I spoke with the oncologist today and he said to not be alarmed and to expect a spike when starting the Imbruvica for the 1st month or 2 (it can double according to him), but after that it should drop dramatically. Has anyone else that is on Imbruvica noticed this initial… read more

A MyLeukemiaTeam Member said:

Yes. WC went from 49 to over 130 before it started to drop. It took 3 months to go down to 68.
Do labs again in 6 days so hoping to see another drop.
read more

posted 6 days ago
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