I am wondering if others are having difficulty with skin cancers if they have CLL.
Not sure if the skin cancer is progressing due to disease or side effect of Imbruvica.
My mother has needed many progressive surgeries to treat her skin cancers and wants to come of the Imbruvica which seems to be helping her white counts currently. Her doctor has discussed taking her off this med due to this issue.
Any advise?
I'm not a doctor but I'm told that our CLL makes us more vulnerable to secondary cancers and skin cancer is the most common. I get checked every six months and always have several basal cell and squamous cell carcinomas that need to be removed. Got to stay on top of it.
Thank you. I wish you all the best on your CLL journey. Keep just getting skin checks...my mom goes every 3 months now since she has had so many. (At least we think so)
I saw my Heamatologist a week ago. He pointed out a red mark on the side of my face and said "I would get that checked out. You guys (meaning people with CLL) are much more susceptible to skin cancers than otherwise. Anything unusual you should get it checked out quickly." So I did and it was.
How do you take care of your basal cell wounds afterwards. How long does it take them to heal? I just had some biopsies and have 2 that need to be removed. One on each forearm. Go next month to have done. Currently healing from biopsies.
Bill1288
Bill: I had one taken off my nose and one off my ear. The wounds are small and they heal quickly. Nothing really to do to care for them. It isn’t a big deal. The only pain and pain is an overstatement, a pinch is probably the correct description, is from the numbing agent shot before the procedure. Good luck.
Hello,
The Dr should tell you what they want you to do to care for your skin after the biopsies. Maybe a little topical antibiotic and bandage etc...
Just watch for any signs of infection (increased redness, pus, fever etc ..) since with CLL you are potentially more prone.
You might want to repost this as a new question, as it shows up in the middle of an old post where many wouldn't find it. When I had a skin cancer removed I assumed that an antibiotic ointment would be the follow up of choice. In fact, it was plain Vaseline. I have seen others post this as well. Always ask your treating doctor. I'm sure follow up has to do with the size and characteristics of the specific area in question.
I found out on this forum I need to be checked every 6 months for skin cancer....I got the referral from my doctor just a few days ago. Thank you for freeking me out some with your post 
Scott
Why did none of my doctors tell me I needed to be screened for skin cancer? I had to find out from some people on the Internet
I argued with a medical oncologist from Miami ( who was Scottish by the way and very insulting to me) who was subbing for our regular doctor about this issue. He maintained that there was no correlation with CLL and skin cancers. My husband has had 2 malignant melanomas and 2 basal cell carcinomas removed........hmmm......not just random in my opinion.
Bummer! Most Scottish people are smart, but this gentleman does not know what he is talking about. This points out the need for a well informed CLL specialist.
My doc said not to be concerned about skin. To be more concerned about other secondary cancers. And I live in FL. Guess her patients have not had problems. I think the damage was done 45 years ago when we sat out with aluminum foil and iodine instead of lotion. We are prone to everything. Luck of the draw, who gets what. My non CLL friends have more problems with skin than me. I think as we get older our skin is thinner and more susceptible. I do my check ups and put lotion on. Life in the tropics is sun, boating, golf, etc. Always wise to take precautions.
Hi NJCTMas,
CLL’ers have an established 8 to 10 times greater risk of developing skin cancers than the unaffected population. It’s believed to be due to immune dysregulation which fails to address the development of the skin cancer cells (rather simplistic explanation I appreciate).
I’m not entirely sure what you mean by your ‘mother’s skin cancer progressing’ or what kind of skin cancers she has. The one of most concern is obviously malignant melanoma which has the potential to infiltrate the lymph nodes and eventually the organs if not caught early enough. Has she needed therapy and meds for these cancers or have they been dealt with by excision and/or cauterisation type techniques etc?
It sounds like the imbruvica is essentially working well for her CLL but is somehow suspected to be fuelling the skin cancers. Is that right? I really have no idea if Imbruvica could be implicated and she’d need to be medically guided on that but I’d be concerned about stopping the imbruvica personally. Others may know if an association has been established.
I was diagnosed with a malignant melanoma less than 2 years after my CLL dx. Thankfully it was surgically excised and then a further area around it essentially cut out for safety. The NHS sadly offers no routine dermatological surveillance even for CLL’ers. I need to report any issues to my GP but the onus is on me to detect possible problem area. It’s not acceptable but I’ve been told Dermatology Depts. are badly oversubscribed.
I hope things go well for your mother but she needs the very best advice she can get.
Newdawn
Thank you for your insight. So far all procedures have been either handled with topical medication or surgey.
Most recently, she has 3 new spots that showed up that require the plastic surgeon again, which is why I am saying progressing because she sees the demo every 3 months and these are new but require a more in depth surgical procedure that mohs procedure was not recommended for by the dermo due to size and depth.
The second part of concern is the oncologist discussed possibly coming off the Imbruvica if her skin cancer kept this pace. The Imbruvica is currently doing its job with the white cells etc.
I was wondering if others had many skin cancers and if their doctors recommend coming off the Imbruvica for this reason as well. It does seem the skin cancers are showing up frequently at this point.
Thank you!
I’m sorry your mother is finding herself with this dilemma and it must be a great worry to you too.
I’m sorry I can’t help with the imbruvica interaction question because I’m presently untreated with no personal experience of imbruvica (Ibrutinib).
It must be a relatively new area to the Consultant Dermatologists too.
Hopefully others may be able to relate or know of research on this issue.
Best wishes,
Newdawn
Thank you! Best wishes in your CLL journey
Well
I am not that bad in terms of my CLL BUT my skin has really taken a beating and I am getting stuff removed pretty much every 3 months also and growing all kinds of strange stuff and bleed and risk infection from what seems to be minor bug bites
So far because I stay on top of it nothing has gone beyond simple removal but it’s definitely nerve wracking
The last visit to the Dermatologist they had me see their Allergy Specialist as there a bit baffled and I was pretty impressed because he did not really know anything about CLL but spent some time researching it so he could be more helpful and I left without a solution but was comfortable as he is really putting in the effort to help me
I have had both basal and squamous cell carcinomas but they occurred prior to my taking imbruvica by a year or two. My understanding is that the CLL makes me prone, not so much the targeted therapy. I also have a skin "rash" that has defied diagnosis by an army of dermatologists ever since I had bendamustine for my CLL (7 1/2 years ago.)
Have the mds taken a biopsy or tissue sample/skin scraping of rash? I will assume they did. However, mom has not had that particular drug. She was treated with conventional chemo but that has not caused a skin rash.
Good luck on your CLL journey.
I've had so many biopsies from all parts of my body arms, legs, abdomen, chest, back, and they are each and every one inconclusive to diagnosing the strange rash.
My husband has had 5 basal cell cancers, one squamous cell, and will have another spot biopsied next week.
Though I am very early stage CLL, and still on watch and wait, I have problems often with pre-cancerous skin spots. About every 3-4 months, I see my dermatologist, who acknowledges that he treats/removes spots more so from folk diagnosed with CLL. He was somewhat knowledgeable about the problems associated with CLL, so that helped my feelings.
I suspect that some of us are more genetically prone to skin cancers, regardless of our CLL, but that, as Newdawn says, our likelihood of having a melanoma is amplified due to the CLL. My father had a malignant melanoma removed many years ago, and I have a sister who recently had the same...neither which had a CLL diagnosis. So, I suspect other factors may be more involved with the likelihood of melanoma than just your moms meds, but it sure would be interesting to know any connection.
Best wishes, and may God bless!
Stairbuilder
Thank you very much. I wish you all the best on the bumpy road of CLL. You will be at a higher disposition of melanoma since your family has a history of it. Best wishes to you
Same here. Squamous cell cancers popping up. Mohs. Sure get tired of wound care.
Indeed!
Despite my husband's skin cancers, our doctor has never suggested coming off Imbruvica. Just said he might be more skin sensitive. He wears 70 sunscreen and hats. Long sleeves etc. as he is an avid golfer.
Oh boy... mom does cover up outdoors and literally stays inside during peak hours! I wish you both the best in the CLL journey
I was diagnosed with CLL three years ago. Prior to that, I have had a long history with Basal cell skin cancers. My dermatologist told me that with CLL I was more susceptible to skin cancers. I go in for a check up every 6 months. I might switch to every 3 months. Facial wound care is almost the rule and not the exception for me.
Check out the research of niacinamide + aspirin in regards to skin cancer. A couple of years ago I had about a dozen actinic keratosis removed. The next time I went to the dermatologist I had - zero - removed. Zero. I can only explain it by the use of niacinamide + aspirin as well as drastically reducing PUFA in my diet.
I will definitely look at that info. That is great news that it worked so well for you. Diet is definitely key to improving illness.
I was advised at my first visit at OSU to start seeing a dermatologist.
I am also early stages of CLL.i was diagnosed 8 years ago and on a watch and wait program. I have also had have had both basal and squamous cell carcinomas and get my skin exams 2x a year to stay on top of it. No one can seem to confirm any relation to CLL and I’m not qualified to make any statement , however, I definitely believe there is a connection. I’ve seen a lot of people post comments on these forums that all seem to share a similar connection. I just follow a cancer diet, exercise and get my skin exams on a regular basis to be safe. Best of luck to everyone. There just doesn’t seem to be a good place to get information around connections of CLL ant any other conditions. Love to hear others opinions and experiences as I continue my own journey to stay healthy and free from progression!
If it helps you my mom has had this illness for 21 years. We have been through so much (believe me!) but the great mds and her persistence got us all these years. Do not give up...stay positive and be good to you!
My own Doctor has never mentioned anything about checks for Skin cancer, even after several blood test sessions now, after discovering I have CLL last year. At a recent CLL support group meeting, first - another long time CLL patient mentioned marks on my skin and Said "You should get those checked". Then the Lukaemia specialist nurse said "of course you guys (CLL patients) are more susceptible to those sort of things (Skin Cancers). Better get that checked."
So yeah! Always get anything in doubt checked if you have CLL.
In my case I went 7 years after being diagnosed with CLL before chemo. I never had skin cancers til after chemo. Now I get a few skin cancers every year.
I took imbruvica for 6 months. It helped me a lot but i had to stop taking it due to sores that developed on my skin. 2 years later after imbruvica I'm still in remission. I had skin cancers before and after the imbruvica.
Just another data point.
Oh good for you that you are still in remission! I wonder if what mom currently has are sores then. We will notknow until the removal at this point but definitely something to consider!
Thank you and wishing you all the best
I was diagnosed with CLL fifteen years ago and didn't need treatment until six years later. I live in Canada and was put on prednisone and Leukeran. It has been nine years since then requiring no treatment and have only needed to have blood work checked twice a year since then. In the last year we are watching enlarged lymph nodes on my spleen and beside my pancreas. I have an appt. In August and hope to find out if some form of treatment will start or not. But I find it very interesting to read on this site about skin cancer. I have had one instance of basal cell carcinoma removed and am waiting on biopsy results of a new specimen. I will ask my dermatologist if there is any relation to CLL and skin cancer at my next appt. in two weeks as well as at my next appt. at the cancer centre in August.
It would help if you described the skin lesions as to how many there are and where they are located and how big they are. What types of skin cancer ( basal cell carcinoma versus squamous cell carcinoma versus melanoma). Can the skin lesions be excised readily? It would have to be very serious skin cancers I would think to stop taking your leukemia medication. The threat from skin cancer and chance of progression of that disease would have to outweigh the threat of CLL and the progression of the leukemia. Without all those details, I may not be able to give you helpful advice. You would have to trust the advice of your physicians.
But I would ask what plan B is for the CLL if you stopped the IB?
Sorry to mention this but this post is a year old. You might get an answer with a PM.
Jeff
Not sure how I got in here. Thanks for letting me know
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