CLL and skin issues/genetic markers

[Gman2]

Hi everyone, I am a 67 yr old male and just had a visit to the hematologist. After reading many posts I realized I know very little about my cll. I asked about the genetic markers as I wanted to find out my specific cll. The PA looked at the chart and it said that my markers were not the typical markers found in cll but they were not the markers that usually indicate a rapid progression and the need for treatment. Is there anyone else like this? If I am able to find the information would anyone know anything about this? Also, while my blood work looks ok for now I will periodically experience some hives at night and recently have had a few minor bumps behind both of my ears that itch a little. I never had any skin issues before the cll. Also, my bones are very sensitive and bruise easily.Thanks for your help and support. Wish everyone a Happy Thanksgiving.

[AdrianUK]

Regarding skin I have had an increase in urticaria since having CLL which I suppose to me is probably an increase in allergies (my nasal issues have also been worse too). For me at least it doesn’t seem to be directly related to CLL cells themselves as it continues after getting to MRDU. I guess it’s to do with a broken immune system.

I get some relief from using a very high dose of an antihistamine called fexofenadine (only do this under medical supervision. I had ECGs etc to be sure that the drug wasn’t effecting my heart). For the nose I also take dymista a combined Steroid and antihistamine spray and also a sterimar nasal washing spray.

[Gman2 in reply to AdrianUK]

Thanks Adrian! I have never had any skin issues until the cll. Of course, the PA and hematologist say it's not related to the cll. I say BS!

[AdrianUK in reply to Gman2]

Yeh. The way I see it is for me at least it’s an allergic thing. And my immune system is messed up so that allergies are worse and attacking infections aren’t. It’s like my immune system can’t be bothered about true invaders but gets too excited about pollen dust mites and other things.

So in a sense it may not be the CLL lymphocytes themselves causing the problem (I currently have so few of them anyway!) but rather the disrupted immune system which possibly even predates CLL and causes it as well as is damaged by CLL and then by all the current treatments.

[Gman2]

Thank you Scott! Of course the PA is on vacation this week so I have to wait until she returns next week. Bummer!

[virdieblue in reply to Gman2]

They don't just give you a copy of your results??

[Gman2 in reply to virdieblue]

Hi Va, no, that would be too easy. I was diagnosed at MD Anderson and am going back to try to navigate the portal. Originally from NY as well. Wish you the best and a Happy Thanksgiving!

[Izuni]

Hi Gman2,

I was suffering from chronic urticaria for over 4 years before CLL diagnosis. My oncologist say there is no connection with CLL,except that chronic urticaria shows a dysregulation of the immune system.

[AdrianUK in reply to Izuni]

So if CLL causes a dysregulation if the immune system....and of course you’d have had CLL cells floating around for ages before diagnosis.

[Izuni in reply to AdrianUK]

You are very right, it is obviously connected, but oncologists somehow don't want to admit it. I wonder why, maybe there is not enough data behind this...

[Gman2 in reply to Izuni]

I also wonder if it is directly related to the cll if they would be responsible to provide some kind of treatment if not a referral

[Newdawn Administrator]

It always amazes me when medics reject skin problems as possibly being CLL related when we consider skin is the largest organ in the body and we have on average 22 square feet of it! It’s presumably why we are more predisposed to skin cancers.

I’ve certainly had my fair share of skin issues with lots of bruises, petechiae, red blotches and itching not to forget a malignant melanoma!

At the moment the skin on my neck feels inexplicably tender with little to show for it. All unfortunately seems part of the CLL landscape to me.

Best wishes,

Newdawn

[Gman2 in reply to Newdawn]

Newdawn, I have some similar issues periodically like the bruises, red blotches which seem to be like the hives but it is gone all day and shows up in small areas at night, the small bumps that itch behind my ears. I have always taken care of myself and had the good fortune of health until the cll. And they tell me it is not the cll. Don't believe it.

[WinJ3]

After years of battling chronic urticaria, my hematologist finally concluded CLL was the cause. All my rashes started to go away when I was in remission from obinutuzumab treatment. The rashes came back when my CLL became active again. 🥺

Win

[Gman2 in reply to WinJ3]

I understand and it makes sense.

[michaeledward]

My hematologist has me see a dermatologist every year for a head to toe skin examination. Of course, one of the things they are looking for are any signs of skin cancer, but their examination invariably find other things, including fungal infections which has been thought to be caused by CLL. They have also have removed several growths which, fortunately, turned out to be benign. Bottom line, whatever the cause of any of this (and other skin conditions), it is helpful to visit a dermatolist annually.

[Gman2 in reply to michaeledward]

Your advise is very good. I have been meaning to do that so I appreciate the reminder. Happy Thanksgiving!

[michaeledward]

Happy Thanksgiving!