strange thing...: I have been doing some online... - CLL Support

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strange thing...

loveRicky profile image
9 Replies

I have been doing some online research this morning about CLL, after dropping off some prescriptions at the pharmacy on Sunday. I did some grocery shopping while waiting. I did not bump my finger/hand, but had a bloody mess and had to buy a box of bandaids. My nails have been splitting in the middle. My little finger, fingernail broke down so low it was bleeding. it was cracked in the middle, so I lost half of the top of the nail. My hair is getting thinner. My skin continues to worsen. I am now experiencing growths everywhere. My left leg/foot continue to get worse. I have not had any treatments yet for CLL...Only for the WM which was is 2012/2013...bendamustine, rituxan and prednisone. I have Stage IIIA kidney failure and as a reminder, had my aortic valve replaced with a pig valve in 2016. Has anyone had any skin/hair/nail issues without having treatment for CLL? Trying to stay upbeat and positive, but I feel like I am falling apart piece by piece. I also had a terrible incident happen on Saturday. My left leg (bad leg) began to hurt really bad...worse than it ever hurt. I then got very nauseous and very sweaty. I took my pulse and it was 101! I have ginger louzengers for nausea and took one, but the minute I put it in my mouth, I started gagging and had to spit it out. I layed across the bed and kept telling myself....You will be OK! You will be OK! RELAX! I had a doppler done of both legs and it showed no vascular issues.

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loveRicky
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9 Replies
Spark_Plug profile image
Spark_Plug

I know computer screen resolutions and such can alter color differently. But, I see a green/black shade to those sores. I can't believe your doctors are not concerned about them.

Donnamccll profile image
Donnamccll in reply toSpark_Plug

Agreed. I've had multiple forms of skin issues on my legs and my dermatologist has me using tretinoin now to reduce the incidence of reoccurring skin cancers. That leg looks serious.

loveRicky profile image
loveRicky in reply toDonnamccll

Thank you so much for your response and information on Tretinoin. My hematologist/oncologist and family doctor believe they are ulcers from the lymphedema. The scary thing, the right leg is beginning to start with the discoloration and a few sores too. I am planning on trying a new dermatologist. I had been seeing one on a regular basis and he simply looked at that leg and said....Ewe! You have pipe issues!!! I had a doppler done of both legs and it showed no vascular problems. I am very fearful I will never loose a leg due to this. Here is a question for everyone. Every time I get bloodwork done, it says they must warm it up to 37 degrees due to agglutinins and globulins, yet I test negative for cold agglutinin disease. I can NEVER get a SED rate due to a "substance" in the blood. Is any of this CLL related? I know there is a disease called cryoglobulemia too. Haven't done much research on it.

Adlucy profile image
Adlucy

My heart goes out to you for all you are suffering. You must be in agony. Please make a nuisance of yourself with your doctors. They should be concerned as Spark_Plug says.

LeoPa profile image
LeoPa

I'd show this to my dermatologist. The sooner the better.

MisfitK profile image
MisfitK in reply toLeoPa

Agreed. I'd head to an ER and show that leg if you can't get into a dermo...today.

Stamphappy profile image
Stamphappy

I agree- this needs to be seen by dermatology and your general physician to monitor for infection. Together, they should have an appropriate treatment plan to prevent worsening symptoms. Have you seen your oncologist/ hematologist recently?

DRM18 profile image
DRM18

Hi there,

To address your question, I had some pretty severe skin infections before treatment for CLL.

During/after treatment, such problems minimized significantly. (I also see a dermatologist every six months.)

--Dave!

Islandvibes profile image
Islandvibes

my friend has lower legs that look like yours. She had a plastic surgeon remove the lesion because it kept growing back. She had had it removed before from dermatologist. For sure see derm if can. . Your foot also looks swollen ( edema ) I think they need to do more work up on that leg, she wears a leg cuff and hour a day to help with circulation. I’m sorry you feel so bad. Hope you find some help with pain.

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