This is my first post on this forum. I am a 58 your old man, and I was diagnosed with CLL two years ago. I have been asymptomatic, and have been monitored on a “watch and wait” basis, with blood tests every 6 months.
A couple of weeks ago, I became concerned about a mole on my back, and went to see my family doctor. She thinks it is a melanoma and is referring me for tests/treatment - probably surgical removal. Hopefully, it will have been caught in time, and all be well.
As you do when you receive news like this, I have looked on the internet, and found that an extensive study in Rochester, NY found that people with CLL have a 600% higher risk of getting melanoma than normal. It further suggested that people with CLL should routinely monitor their skin for any symptoms.
I thought it might be helpful for readers of this forum to be aware.
Keep well
Written by
Donutto1
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Yes that’s good advice Donutto because unfortunately CLL’ers seem to have an 8 to 10 x greater chance of developing skin cancer than non affected. Like you, I was diagnosed with a melanoma found in a mole on my back about two years after my CLL diagnosis. Thankfully it was early stage and successfully removed without requiring a sentinel node biopsy or more invasive procedures.
Hoping yours will also be successfully eradicated.
I have cll and am not on treatment. Have been close but so far so good. I found a mole on my elbow and it took me a while to find a dermatologist. It was thru my oncologist at city of hope in duarte, california usa. It is stage pT2a which isn't bad and according to the cancer society should not affect my lymph nodes but the oncology surgeon wants to do surgery and take out 2 lymph nodes to see if the melanoma has spread on August 26. She has not cut back the melanoma wound to margin at this point and the dermatologist just did a shave on July 19. I am very concerned that the cancer is left in the wound instead of them cutting it out when found and that she's not going to cut it back until more than a month after it's been discovered. I keep voicing my concern but no one hears me. I have no immune system like all of us and i can only imagine the cancer cells rushing to the site and by the time they get to it, it will be in the lymph nodes. Not to mention what a surgery like that will do to my cll. Would appreciate any comments or suggestions.
If you have concerns about your melanoma treatment, I recommend you seek a second opinion. With regard to your concerns about surgery, with CLL it's our possible higher risk of infection if we are neutropenic, or greater risk of post operative bleeding if we have a low platelet count or are on a BTK inhibitor that need to be considered, not the possible potential of worsening our CLL.
Had the surgery. 4 lymph nodes were removed and tested. 3 of them have melanoma in them. I am scared. Melanoma is very aggressive. All that I have read it is fatal in us because we have compromised immune system. I am 77 and in good health but?? they are still staging at this point. I tried to get the surgeon to do the surgery earlier but she said in her professional opinion of working with people like me, it would not spread to the lymph nodes. I just rejected a pet scan because I had 2 ct scans earlier because of abdominal and pelvic nodes, and MRI'S have no radiation and pet scans have double the radiation of ct's. She has agreed to the MRI's. I am very easy going and dislike confrontations but seems like I am always researching trying to stay of top of things so that I can get the appropriate care. There is no protocol for the collision of Melanoma with CLL so few doctors do both. Anyone survive melanoma?
Sound advice. I sought out a dermatologist two years ago just for this reason. I see him once a year for screening, no big deal at all.
My diagnosis of lymphoma was concurrent with one of an infiltrative basal cell carcinoma at the side of my right eye. It was successfulky treated with brachytherapy,a type of targeted radiotherapy used commonly here in Spain.
I’ve been on watch and wait for about 8 years. Like many CLL people I have constant problems with skin cancer. I see the specialist here in Australia at least 6 monthly. Each time I have some cut out , some frozen off, use a cream to remove BCC and most recently a SCC was treated with Aldara cream. My specialist couldn’t understand why I had so many until I was diagnosed with CLL. These days I start treatment with Aldara as soon as I see one.
I have a basal cell carcinoma on the back of my neck. It was removed by my gp who did dermatology. The biopsy confirmed the diagnosis but they told him he hadnt left enough of a border and it might come back.It is growing again and hospital dermatologists will cut it out after xmas. I hope this is the right treatment. Anne uk
Once you have one you usually start getting more so worth pushing for a specialist now So you are checked every 6 months When they find them early you can use cream. I’ve had a number cut out in surgery. I recognise them myself now and start applying cream as soon as I see one. Normal skin doesn’t react to Aldara just the bcc and scc. Good luck with your surgery. Best to get it all so no worry in the future. Melanomas are the scariest ones - I’ve never had any. I blame my Scottish skin. It wasn’t meant to live in Australia. 😀
Thanks I will take your advice. I have seen a consultant this week. I will ask her to check me over. I am very pale skinned and burn easily. It drives me mad plastering suncream on but I have no choice. I tend to sit in the shade. My skin has changed since taking ibrutinib. I looked slightly brown when I had only had a coffee sitting under the parasol. My husband said I looked like I had been on holiday. We dont get your hot weather but I will be careful, Anne uk
Reassuring to hear that I am not alone. And yes, need to watch the sun ... I have spent a lot of my life working in tropical countries. The doc reminded me: wear sunblock and a hat!
Sorry to hear about your possible melanoma. I too have had a few skin cancers removed - more common in those of us with CLL,’. My dermatologist suggested I take nicotimamide twice daily to significantly reduce the number of skin cancers that we are at risk for. So far it seems to be helping - you might want to check this out with your oncologist.
Sad but true. Like you I am on W&W, but older with a dysfunctional immune system. Had my share of skin cancers; now on a three month schedule for full body checks. Skin cancers can be more aggressive with CLLers, better to find them early.
My melanoma is in stage 1. the shave biopsy was taken on July 19, I am not going to get the wide excision until August 26. My concern is that without the wide excision sooner, the cancer remains in there and definitely will spread.
This website with its melanoma warning and recommendation to get a dermatologist on your “CLL doc team” was the very reason I did just that.
Took me 5 months to get an appt with a good dermatologist to start the skin monitoring mode, but glad I’m dialed in w/dermatologist in case I have a sudden appt need.
Your post is a great reminder to all us CLLers, thanks for posting!
Sadly, routine dermatological monitoring is not offered on the NHS even with a history of skin cancer. The argument is the GP is the first point of call but they are not specialists and won’t carry out routine monitoring either. I’ve had to report something ‘suspicious’ to receive a check up on the 2 week cancer protocol but the way the waiting list is presently, I’d be surprised if that could be guaranteed. The NHS cite shortage of resources as the reason routine checks cannot be offered but frankly I think it’s a disgrace and serious risk for people with CLL.
Via this website I’m slowly learning that other countries (like yours, UK) are not as fortunate as we have it in US for greater ease of seeing specialists. I feel your frustration regarding that!
The care here is excellent but we don’t have ease of access and choice that’s true. I was fortunate to see one of the best dermatologists in the country to have my melanoma treated. I only wish he’d been my haematologist too! Not been so fortunate in that regard 😟
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