Itching

[Txnocally]

I was diagnosed in 2017 with CLL and am on watch and wait since then. On July 1 2020 I started itching all over my body and so bad that I scratch till I bleed. Saw a dermatologist this week and she thinks it is my CLL. Has anyone here had this problem? I see my oncologist in 3 weeks. Thanks for any help.

[lankisterguy Volunteer]

Hi Txnocally,

Please look on this page for the box labeled Related Posts

*Itching

*cll related itching solutions

*severe itching any advise?

*CLL, Rashes, hives and itching

*Itching getting worse

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I have had a rash on my legs, arms and torso (mostly small light red dots connected in a web pattern –most days no itch or discomfort) since 2006 before my CLL diagnosis in 2008. Now in 2020 my skin is very thin and most contact with branches or furniture corners will cause bleeding.

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Each of the 4 times I was treated for my CLL it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.

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I also have lots of seborrheic keratosis that seem to wax and wane along with the red dots and rashes. Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.

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The common result from expert pathologists that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

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My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

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In winter - dry cold weather, if it becomes itchy and bothersome, I use Triamcinolone Acetonide (prescription steroid cream) for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.

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A 2016 diagnosis by a research pathologist eliminated CTCL and its cousins, but attributed it to T-cell Dyscrasia. ncbi.nlm.nih.gov/pubmed/176...

My CLL expert doctor believes that it is caused by a HHV-6a infection (roseola infantum or exanthem subitum) which we discovered in 2012 but like most of the HHV viruses is not curable and stays dormant in our cells until the immune system declines and it re-emerges. en.wikipedia.org/wiki/Herpe... ref: HHV 3 is Chickenpox & Shingles, HHV 4 is EBV & Mononucleosis.

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Our archives has 500 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:

ncbi.nlm.nih.gov/pubmed/174...

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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I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping treat your sores will be part of that care.

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Len

[Txnocally in reply to lankisterguy]

Thank you so much for your info. Much appreciated.

[WinJ3]

Yes, I’ve had very bad itching all over my body. Mine was so bad, I was scratching and bleeding. My itching was the beginning of all kinds of rare skin conditions. I was seeing all kinds of specialist and took all kinds of steroids and corticosteroids. My dermatologist and hematologist finally agreed it was cause by cll.

One medication that help me was Doxepin. So, that’s one to consider if the itching continues. I wish you well and hopefully your itching will just go away.

Win

[Txnocally in reply to WinJ3]

Thank you for your info will pass this on to my dr.

[mrsjsmith]

Mine started when I took Septrin I believe.

There are a number of creams mentioned on posts over the years here, but one I like is Aveeno Anti-itch lotion. It contains a small amount of calamine lotion.

Good luck. Mine is under control now but it can be unpleasant.

Colette

[Txnocally in reply to mrsjsmith]

Thank you for the info I'll try anything.

[Ghounds]

Yep. My gp just thinks it's eczema but it isn't, it's nothing like the two types of eczema I have suffered on and off all my life.

It comes and goes. Just getting over a flare on my neck and upper chest, looks like a cross between nettle rash and severe sunburn. My skin goes deep purple and very sore, can't stand water on it and if I perspire it's agony. Covered the whole of my upper body just prior to diagnosis, now thankfully much more localised. Seems to be triggered by humidity and stress.

Sorry I don't have any easy answers.

[Txnocally in reply to Ghounds]

Thank you for your reply. Good luck to you.

[Artygolf]

Hi l was diagnosed with CLL about 2 years ago!

I also suffered from rash and itchy skin! I was referred to dermatologist who took a biopsy ! The diagnosis Psoriasis! So maybe unrelated?

[Hidden in reply to Artygolf]

My skin condition completely cleared up during chemo. After chemo, it returned worse than before. Now I'm on prescription Ketoconazole 2% shampoo and Triamcinolone Acetonide Ointment USP, 0.0025%. Both work good. The ointment has been amazing at clearing up red rashes anywhere I've used it on my body.

Here's more info on this medication:

dailymed.nlm.nih.gov/dailym...

[Txnocally in reply to Hidden]

Thank you for your reply.

[lankisterguy Volunteer in reply to Artygolf]

Actually Psoriasis is an auto immune disorder / disease, and some CLL patients get one or more of the 60 autoimmune diseases

healthline.com/health/autoi...

webmd.com/a-to-z-guides/aut...

CLL seems to disrupt the delicate balance of our immune system so it under reacts to bacteria and viruses, but over reacts to attack our own cells.

However there is no statistical proof connecting the them, ( yet ).

cllsociety.org/2017/04/auto...

ncbi.nlm.nih.gov/pmc/articl...

SNIP: We all understand that CLL is a disease of the immune system, but we need to keep in mind that its dysfunction can be manifested both as its diminished capacity to fight off infections and secondary cancers, and its increased tendencies to attack our own healthy cells, especially the blood cells.

Len

[Artygolf in reply to lankisterguy]

That is interesting because l also have Under active thyroid which is also an autoimmune disease! Thank you!

[Txnocally in reply to lankisterguy]

Thank you I did not know this.

[Sushibruno in reply to Txnocally]

Maybe it's something you're eating and that could be anything, even an ingredient herbs spices ect.. maybe u should go to an allergist.

[Sushibruno]

Prior to my diagnosis I had unexplained itching all over my body for about 2 weeks. I think it had allot to do with the cll.i knew something was going on then I was diagnosed with cll. It did go away eventually. Have u tried benadryl?

[Txnocally in reply to Sushibruno]

No l have not but at this point I will try anything.....driving me crazy.

[Hidden]

Took a Diphenhydramine 25mg (Benadryl) to go to sleep last night because I couldn't stop itching. First time I've done that and it really worked well. Got good rest.

[Txnocally in reply to Hidden]

Yes I take one too sleep well but bad dreams.

[Hidden in reply to Txnocally]

I'd try 2 Benadryl 25mg next time. That's still just a full adult dose.

[RZ8983DV]

I had eczema as a child. I didn't get if for along time after that. I was diagnosed with CLL in 2008 which has been indolent not requiring treatment. I have had the eczema or irritation with a need to scratch on several occasions since diagnosis, most recently this year

[Txnocally in reply to RZ8983DV]

Thanks.

[ClassyLady3]

What I experienced was ‘paraneoplastic itching’ and is a part of my overall ‘paraneoplastic syndrome’. Since it was not histamine-related, Benadryl did not help. This was the reason I was started on Ibrutinib after 7 years of watch and wait. The itching has resolved on this medication.

[Txnocally in reply to ClassyLady3]

That is interesting to know. Thank you.

[skinkade]

Oh yeah this skin thing is real. Mine started when I was undergoing my first treatment in 2016 for non-hodgkin's lymphoma. Just a slight rash that started on my forehead. I'd had mild eczema off and on as an adult and apparently it was worse when I was a baby. The docs assumed it didn't have anything to do with the cancer or treatment. It progressively got worse through treatment and especially when I was in remission. Cancer came back in 2018, all the Dermatologist specialists I was seeing at that point assumed it would go away after I went through treatment again. It got better only because I had to do oral steroids as part of my treatment. Then after I was done it got really bad. All the hematologist and oncologist just shake there heads and tell me they don't know why?? Very frustrating. Mine is slightly under control as I'm on a compound now that has helped.

[Txnocally in reply to skinkade]

Thank you and good luck to you.

[Txnocally in reply to Txnocally]

Thanks for your input. I've been itching since July 1 2020 oncologist said it has nothing to do with cancer. I am on hydroxyzine and seems to have helped a LITTLE but this med. Makes very tired all the time. See dermatologist again in 1 week hoping she can do something for me. This is awful to live with as you know. Have you seen help with your new compound?

[JB656]

Hi

My GP has told me that itching particularly after a shower is a textbook sign of CLL