Unusual condition

[LinnyPooh]

Haven't written in a while. Had interesting development. Had sore on my ankle that looked like a bug bite. Got red and painful. Went to family doc, thought it was cellulitus. Put me on antibiotics. said to go to ER if worse, 2 days later went to ER. Told them what Dr. said., The Er doc agreed and put me on IV antibiotics and admitted me because of my CLL. While waiting for a room a very long time, shift change and new doc came in. She didn't agree with dx and said she thought it was a rare condition called Pyoderma Gangrenosum (PG). Said she saw her first case recently, (most docs never see it) that's why she recognized. Said may need biopsy. She took a picture of it and called my Oncologist and sent the picture. He thought so too. Said that it was likely caused by the Imbruvica. Sent me to dermatologist the next day. She didn't do a biopsy because it was on my ankle bone. Scraped it to get a better look and confirmed the diagnosis. Showed me an article that made the connection between Imbruvica and PG. It is very painful to touch.. My Oncologist put me on steroids and said to stop the Imbruvica until I see him next week. Sending a Home Health nurse to come in several times to change the dressing and teach us how to do so in between visits. So, has anyone else had experience with this? Very frightening couple of days.

Linny

[lankisterguy Volunteer]

Hi LinnyPooh,

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That is certainly an unusual skin condition, and we had another earlier this week:

healthunlocked.com/cllsuppo...

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My reply mentioned that there are many skin issues associated with CLL-

Our archives has 800 replies that mention skin issues and CLL:

healthunlocked.com/cllsuppo...

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The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:

healthunlocked.com/api/redi...

SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".

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Len

[LinnyPooh in reply to lankisterguy]

Thank you. I alsays like to know as much as I can regarding my health. I didn't know some of the things you mentioned, particularly the reaction to insect bites. That explains my unusual reactions and scarring from mosquito bites! I will read all the info referred.

Thank you.

LinnyPooh

[CLLerinOz Administrator]

This is outside my experience, Linny, but it sounds as if you're fortunate that someone who had experience with this condition was involved in your care. The latest literature that I could find on the topic which is in the public domain (and which may be the one you were given) is this one which includes details about different treatment approaches that were adopted for five different CLL patients:

mdedge.com/dermatology/arti...

I hope your problem heals up soon.

[LinnyPooh in reply to CLLerinOz]

Thanks. Not sure if it's the same article but I find it very informative. I will see if I can find the one the doctor showed me. I am thirsty for as much information as possible.

Thank you.

LinnyPooh

[GMa27]

That is exactly why I go to my dermatologist whenever I get anything on my skin. I don't know if my hematologist would assume it's CLL related or would know the difference but a dermatologist is expert in skin issues. Glad they caught it! Good to be aware. Never heard of it.

[LinnyPooh in reply to GMa27]

Thank you. It's a new one to me also.

LinnyPooh

[studebaker]

You were lucky there was a shift change and the new doctor diagnosed you correctly.

I never heard of the PG and Thank you for posting about it, but sorry for you to go through, which must have been scary few days and nights for you.

I have been “blessed” with a lot of skin cancer. Some basal cells for some time, but since taking Acalabrutinib I had two large squamous cells removed surgically. I am Thankful for having a great dermatologist who is checking me every 4-6 months and keeps me sane and safe.

Very best with your treatment and do let us know how you are getting on please.

Dana

[strongmouse]

Thanks for all the information. My husband has CLL and is diabetic - type 2- which he has managed well. This year he had a wound which took 5 weeks to heal. One doctor thought that some of the medication he is on for Rheumatoid Arthritis might be aggravating the diabetes. I wonder though if the CLL might also be a part of this?

Complicated, but useful to know.

[LinnyPooh]

Wanted to update everyone regarding my Pyoderma Gangrenosum (PG). The dermatologist that I saw also submitted a wound culture "just in case". She called me a couple days later and said it was positive for Staphyloccus Aureus. Was put on Doxsicyclene (sp?) and antibiotic cream. The general thought is that with the open wound of the PG, the staph infection got it's way in. My oncologist still wants me off the Imbruvica until I see him next week. This has been quite a ride, but the wound is slowly clearing up. Thank you, everyone, for your care and concern.

[Jm954 Administrator in reply to LinnyPooh]

Thanks for the update, sounds like you're on the road to recovery thank goodness

Jackie

[LinnyPooh in reply to Jm954]

Thanks. Yes, I think I am!