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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLeukemiaTeam Member asked a question ๐Ÿ’ญ
Greenwood S.C

Trichodysplasia Spinulosa. I know it says this is rare but I feel like I may have this. Something is very wrong it feels like needles and fiberglass. The higher my numbers go the more this spreading. Maybe it not connected. It driving me crazy. Any advice plz plz

March 31
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A MyLeukemiaTeam Member

Fortunately for me nothing like this happened. However, I have seen a marked increase in skin cancer spots on my face and lower legs. Some of the leg spots have morphed into ulcers about the size of a quarter. All my doctors says is, "this is normal with leukemia and treat the ulcer spots with a antiseptic cream and see a dermatologist".
So that is what I do; every 6 months I see my dermatologist. As for the ulcers, they stay about the same size and I've been using a ointment for treatment. Not much help though.
I sure feel bad for you folks with the stinging, prickly irrational problems. This makes my issues minute in comparison.

Hang in there people, I'll be praying for you!!! ๐Ÿ™

April 1
A MyLeukemiaTeam Member

Hi Beth. My advice is to have what you are thinking it is, get proof/validation/confirmation from a dermatologist. They will do a skin biopsy and can confirm whether or not it is what you think it is. Truly is best not to worry and overthink something when you don't have a concrete diagnosis. Stress adds to compromising your immune system even more as well.
I just had another skin cancer removed...have another spot that dermatologist will be doing a biopsy on in 2 weeks. Total of 3 Mohs surgeries & high potential of another one next month being done. Have had CLL for 10 yrs and it is only in the past 3 yrs that more skin cancers have arrived. LOL. Rich has also had many show up and has his dermatologist take care of them. I also see my dermatologist every 6 months. Please try not to let what others think/see affect you either. Its who you are as a person that matters. Those that truly love and care for you don't care what you "look" like, they care only that you take care of yourself & put your health first. The priority for you is to get seen, get a diagnosis as to what it is and move forward.

April 2
A MyLeukemiaTeam Member

Well said RobertG. I have leg pain daily in my fibula of my left leg. Also have knee joint pain. My oncologist said that occasionally the leukemia cells will pool in areas where an injury has occurred previously.
Anyway, the bottom line is to do whatever you can to alleviate the pain and discomfort. It is always a good practice to consult your doctor with issues that develop from your leukemia.
Take care ya'll. I'm praying for you... ๐Ÿ™

April 30
A MyLeukemiaTeam Member

I hate you going through so many different cancers . That doesn't seem normal to me. It may be something that happens ,but not something that should be normal. I also hate that blood cancer effects so much stuff and now it has to be their on my face and maybe yours for everyone to see. Of cource no one knows just by looking that I have blood cancer they just see something very wrong with my face and I get those strange looks.

April 1
MyLeukemiaTeam

Are you experiencing skin problems, particularly on your face, that feel like needles and fiberglass, and seem to worsen when your blood counts increase?

Skin issues are quite common with leukemia, affecting 30-50% of people with CLL and about 25% of those with other types. The sensations you're describing could be related Show Full Answer

Are you experiencing skin problems, particularly on your face, that feel like needles and fiberglass, and seem to worsen when your blood counts increase?

Skin issues are quite common with leukemia, affecting 30-50% of people with CLL and about 25% of those with other types. The sensations you're describing could be related to several leukemia-associated skin conditions.

When leukemia numbers rise, you might experience:

* Increased skin sensitivity or unusual sensations
* Rashes or lesions that spread
* Itching or prickling feelings
* Changes in skin texture

The needle-like sensation could be related to peripheral neuropathy, which can cause tingling, burning, or sharp feelings. This sometimes occurs with certain leukemia treatments or the disease itself. It's really important to talk with your healthcare team about these symptoms right away. Keep a journal noting:

* When the sensations started
* Where they're spreading
* How they correlate with your blood counts
* Any changes in texture or appearance

Your doctor can examine the affected areas, possibly do a skin biopsy if needed, and determine if this is related to your leukemia or treatment. They can also provide appropriate treatment to help relieve your discomfort.

A MyLeukemiaTeam member shared similar concerns: "I have terrible itching and hives. These are all side effects from the CLL medication." Many skin symptoms can be managed with proper medical care.

March 31

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