Melanoma

It’s a difficult time my husband has also been just diagnoised and awaiting results of wle and slnb 

It is the most difficult time ever and for me the waiting is the hardest part. My story is there for you to read if you wish, I am nearing completion of the 9 doses of pembro immunotherapy and physicay I have been fine. Mentally…. Well that’s a whole different ball game I have struggled so much since I heard that word melanoma last April. Best advice … don’t google , down over do forums, seek help I began some hypnotherapy therapy , spoke to a counsellor and had CBT through work and even took up reiki …. I was at breaking point this time last year x 

side effects … a little tiredness on occasion and after dose 7 and 8 I took a slight allergic reaction ( swollen face )  that was quickly treated with piriton. 
The side effects booklet absolutely terrified me and I chose not to read it after that. Stored away in a drawer and it’s remained there ever since x 

I wish you husband well x 

Hi,

So sorry to hear about your husband’s news, however I think it’s important to be aware of the fantastic care that’s available nowadays.

I am Stage 4, and commenced a combined Ipilimumab/Nivolumab therapy late last year and I’m now on just Nivolumab. You’re right when you say that the list of potential side effects are daunting, however these aren’t guaranteed, and you only have to look at the potential risks of taking paracetamol to see that you’ve been given a “worst case” scenario.

Personally, I have one long-term side effect (to date) - my immune system has attacked my adrenal glands so I now need hydrocortisone tablets every day (but on the plus side, the cancer in my lungs/liver has disappeared).

I know from looking at this forum that some people have significant side effects, however from a my point of view, they haven’t been too bad, and I think it’s important to know that it’s not always a massive struggle.

All the best to you both and good luck!

Hello Lal,

I understand and empathize with the difficult circumstances affecting your family.

I am a 64 year-old male and I was diagnosed Stage 3 melanoma in early 2020 with tumors in the lungs. After completing the one-year immunotherapy infusions and receiving the post-treatment PT-scans and CT-scans my Oncologist pronounced me to be in full remission and cancer-free as of last month.

My only advice to you is to trust the process. Immunotherapy has been accomplishing amazing things unheard of a decade ago. Also give the body the best chance to fight the disease by exercising, eating healthy and get proper rest. Keep everything as normal as possible. Don't change any short-term plans and don't be afraid to make new ones. 

I had no debilitating effects from immunotherapy and never missed a day of work or play. I had irritating but manageable effects such as itchy skin, short-term memory disruption and Keytruda induced colitis. I noticed that the more that I kept to a healthy lifestyle the less bad effects that I felt.

There are so many success stories out there....stay positive and God Bless.

What sensible & wise words, Dave, thank you.  I almost mirror your condition, though have malignancy deeper than WLE on scalp, metatstesis upper neck, another melanoma yet to be confirmed on a lung.  Thoracic appt tomorrow, then see Consulant in charge on Monday.  So it looks ominous, but treatment (or no treatment) to be discussed - I am in my 76th year.  The cancer nurses are v reassuring & comforting in that they will be alongside me throughout, regardless, which is wonderful.

I would be very glad to hear from anyone in just this situation - very especially around my age.  Love and prayers for you all.

It’s a really difficult time but immunotherapy has been a game changer for so many people. My husband was diagnosed last year and we have finished  treatment with just a final CT scan next week. Like you Emo_Bham the immunotherapy knocked out the adrenal gland so he is having to take hydrocortisone everyday.

Try not to change your plans, hopefully he will be given the dates of his treatment in advance so you should be able to work around them. Side effects are different for each person but you are given the worst case scenario. The cancer nurses are always on hand if you need any advice. 

hope all goes well for you. X