I was first diagnosed with CLL back in 2011 and since then I have been on watch and wait with my blood results rising relatively slowly over the years my latest blood test results :- WBC 79.0 AL 73.0 HG 136.0 PLAT 264.0 NEUT 5.2. during all this time I had always been in good health. Then in January 2019 I was diagnosed with Melanoma on my back, I had this surgically removed and at the same time I had two sentinel node biopsies carried out on the lymph nodes on both armpits, all the biopsies on the three area's came back with negative results. Marvelous I thought! but then in October 2019 a lump appeared under my right armpit biopsies taken and this came back positive for Melanoma, I have since had all my lymph nodes removed on that side, I have briefly spoken to the Dermatologist regarding future treatment and she told me that having CLL could restrict the type of treatment available to me, is there anyone who has experienced a similar diagnosis, or anyone who could throw some light on this for me I would be most obliged.
Kind regards
Terrence
Written by
terrence
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I see you are in the UK and have been a member here for a very long time (2013), and your post from 3 years ago talks about finding CLL cells in your prostate.
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You probably know that we CLL patients are 5 times more likely than the general population to get skin cancers.
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You may want to read some of the previous (related) posts that mention Melanoma-you can find them on this page:
Related Posts
*Incidence of Melanoma
*Cll n Melanoma
*Melanoma linked with CLL, close monitoring recommended
*Recent diagnosis and CT scans.
*Dads recent CLL diagnosis
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Each time you open one of those pages, you may find additional links in the Related posts box.
This is when you need your dermatologist and haematologist to be having a detailed conversation on your behalf about your treatment options for melanoma with a curative intent. Your haematologist may be able to reassure her regarding various treatments.
Your dermatologist should also explain to you how having CLL could restrict the type of treatment available. Do you know if your melanoma is BRAF V600 positive as that can offer other treatment options into the mix.
There are other members on this site who have had a melanoma diagnosed who may be able to offer their experiences.
Hi Jackie Thanks for taking the time to reply to my message, I was tested for the BRAF V600 but this came back negative, and I will certainly follow up conversations between the both consultants.
I am sorry to learn that you are in this predicament. Others may reply if they have had this too.
lankisterguy has suggested searching the Forum - that I would definately do.
In the UK your case will be discussed in a Multidisciplinary meeting in your hospital. I cannot imagine your situation is so rare and I would expect good guidance to be available.
I am not sure where you are based, but it may be worth considering a 2nd opinion from one of the big Cancer Centres in the UK. Marsdon, London, The Christie, Manchester, Leeds, Cardiff etc. All these Centres have the CLL "super"specialists, and no doubt the "super" skin Drs too.
Please do keep us in the loop - for we will all learn, and it would be my hope that we can support you too.
Thanks Jig for taking the time to reply, your quite right my case will be discussed in a multidisciplinary meeting which I'm hoping will be in the near future, I'll await the outcome of this before I take any further steps, but thanks for the suggestions re 2nd opinion.
Read “The contrarian who cures cancers” posted yesterday. Use search bar. It is particularly pertinent to the successes achieved with melanoma. Good luck to you in your fight. Elizabeth.
Terrence, last year I have a similar story to yours, mole removed , followed by a wide-incision, followed by a malignant node in my left armpit and all the lymph-nodes removed, (all last year) This is known as stage 3 melanoma.
I'm not sure where in the UK you are. I am fortunate to live in London, and for the op and the follow up procedure to reduce the chances melanoma returning or spreading, I am at the Royal Marsden. However this follow-up treatment is not compatible with Ibrutinib, which I was taking for CLL, but that is the only counter-indicative issue I'm aware of.
My CLL team, at a different hospital, and the melanoma team at the Marsden talk to each other about me (which is good), and both agreed that the melanoma was the more urgent, and in the long term dangerous, of the two diseases.
Dermatologists are not CLL specialists. Speak to a CLL specialist or a specialist skin cancer specialist if you are worried, but if you are still on W &W for CLL and don't need treatment, and you may never need treatment, why worry.
Thanks Roger for you informative reply, could I ask you if you had a BRAF test during this treatment and if so were you positive or negative for the v600 mutation, also are you on any kind of treatment for the Melanoma since your operation.
Terrence, I'm pretty sure a biopsy of the malignant node did test positive for BRAF600 .
Within 3 months of having the lymph nodes removed and with no evidence of melanoma in my body I started a 12 month course of two drugs, Dabrafenib and Trametinib. I have monthly blood tests, 3 monthly CT scans (neck to groin) and I anticipate 6 monthly MRI scans (head). This is all to try to prevent a re-occurrence, not to treat the disease.
Thanks for the prompt reply Roger, unlike you my test result was negative and the drugs you are taking would not be suitable for me because of that, hopefully I will meet all my consultants in the not to distant future to decide on what would be suitable for me. All the very best for the future on your treatment, wishing you every success.
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