CLL and Skin Cancer: My husband has a small... - CLL Support

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CLL and Skin Cancer

lisakc1 profile image
13 Replies

My husband has a small innocuous growth on the side of his nose prior to needing treatment for CLL. His doctor and dermatologist both said it did not look dangerous. He is now on cycle 8 of O+V. The growth began to bleed a couple of months ago, and his primary doc thought the dermatologist should take a closer look. The Dermatologist removed it and sent it out for biopsy. Sure enough, skin cancer. He will begin noninvasive low-dosage radiation in a week or so. My thought is that since it began BEFORE treatment, it was probably CLL related, and it blossomed due to his suppressed immune system during his treatment. We have messaged his specialist to ensure this will not interfere with his O+V treatment. Any insight from this forum's compassionate and brilliant minds is appreciated more than you know! Trying to keep his spirits up! Thank you all again!

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lisakc1
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13 Replies
CycleWonder profile image
CycleWonder

I don’t have any experience to offer but I can offer my hopes that this treatment will be successful and not interfere with his O&V.

lankisterguy profile image
lankisterguyVolunteer

Hi lisakc1,

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Clinical trials and studies have shown that CLL affects our immune system and allows us to develop skin cancer 5x or more often than people with normal immune systems. For many of us it takes a few years for CLL to produce enough extra Lymphocytes to be diagnosed.

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Rather than thinking that CLL caused the skin cancer, you might consider it like the CLL lowered his defenses (before his CLL was diagnosed) so his immune system didn't kill the first few skin cancer cells when they were young and vulnerable. It allowed them to grow unimpeded.

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Len

Pacificview profile image
Pacificview

As if CLL is not enough of a pain. What is the type of skin cancer?

lisakc1 profile image
lisakc1 in reply toPacificview

I believe it is squamous cell, just one more thing that I'm hoping will be in the rear view mirror once his treatment is complete! Thank you!

ViPOR profile image
ViPOR

I have had O and V treatment included in my VIPOR Trial after my CAR T relapse and when I developed more aggressive DLBCL. I am not a CLL patient but have taken many similar meds such as Ibrutinib for my aggressive FNHL. I am routinely checked by a dermatologist since I have developed so many skin cancers. They have been slower growing Basal cell or faster growing Squamous. It is probably due to my not having any B cells from the CAR T and also from past chemos and immune therapies. I have had them biopsied and removed. My trial docs have not stopped any treatment due to my skin cancer. I am now 21/2 years in a CR thanks to CAR T and to VIPOR trial! Best wishes to you for health!

lisakc1 profile image
lisakc1

Thank you and wishing you many days of good health and happiness!

skipro profile image
skipro

Yes

Skin cancers are far more common and far more aggressive in CLL so frequent whole body check ups with biopsies of anything suspicious is so important

I had 1 pre FCR treatment and 7 squamous cell, 1 melanoma, multiple AK’s and basal cell since.

Although my oncologist disagreed, I believe the FCR damage to B cells, T surveillance cells and NK T cells lead to all this

Just started V + O for relapse and will be extra cautious

My skin cancer doc says prevention of melanoma requires both B and T cell function

A study in NEJM showed Taking Niacinamide (B 3 vit) 500mg twice daily reduces risk by 30%

You can get it on line

Did the path report show CLEAR margins

What type was the cancer

God bless

Skipro

lisakc1 profile image
lisakc1 in reply toskipro

Thank you, it’s squamous cell, he will continue with venetoclax and start SRT since it’s on his face, Mohs surgery leaves more scarring

skipro profile image
skipro in reply tolisakc1

good luck

I had a few MOHS surgeries. Some left no scar because the surgeon did an ellipse after all the cancer was out. Closing the ellipse left no scar.

I had another where the surgeon basically dug a big hole next to my eye then used a skin graft from behind my ear. As a surgeon I could have made the elliptical incisions and closed it with no scar but pretty hard to do surgery on myself.

I had a plastic surgeon colleague do a wide elliptical excision of one melanoma on my neck and one squamous cell above my eye and I can’t see either scar.

My personal opinion as a patient and a surgeon is that although MOHS requires “less tissue removal” a wide excision with an elliptical or any number of other techniques, is more likely to get all the tumor and little dendritic extensions and if closed by skilled plastic or other surgeon leaves a barely visible scar than a MOHS trained dermatologist.

Perhaps a plastic surgeon can look at the cancer and get a nice wide excision and closure with minimal scar so there’s no need for radiation which takes s lot longer to heal over and could cause other radiation induced problems.

Best of luck whatever you do.

lisakc1 profile image
lisakc1 in reply toskipro

Thank you! I've heard that Mohs Surgery is 98% effective and SRT is 95% effective, its one of those things where you don't know what you're getting into until after you're committed. I'm hoping that SRT will have very minimal side effects... my husband is worried he would be disfigured with MOHs surgery. This all just sucks. Thank you so much for your support!

skipro profile image
skipro in reply tolisakc1

I hope it goes well for you

🙏

Skipro

Poodle2 profile image
Poodle2

So sorry to hear this, it really isn't fair. I hope they can deal with it quickly and that you can overcome this. It's actually worrying reading all these skin cancer stories. Thank you for letting us know. All the best to your husband ❤️

lisakc1 profile image
lisakc1 in reply toPoodle2

Thank you! Glad we caught it and will be happy to get rid of all of it! Hopefully minimal side effects with SRT!

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