Melanoma/ Immunotherapy

BimboBob said:
Although this seems a weird time of year to discuss this subject, it being the winter and all, I thought I'd share my experience of the last year and a half with you all in the vain hope that a few of you will at least check for any unusual skin blemishes, moles changing colour etc etc.

last April my Wife noticed a mole had gone a bit weird in colour and after a few checks etc etc I had a small op to remove it. I hadn't checked it for ages so never noticed it had gone a funny colour. It was found to be cancerous so I then had a bigger operation to cut out a larger area on my back and the nodes under my right arm as the nuclear dye they put in showed it would probably go there.

All well and good until early this year when one of my three monthly checks revealed that the cancer had not disappeared as first thought but had gone for walkabout into my left armpit and my lung. This is called stage 4. Scary sounding but it only means it's gone somewhere else.

I am now about to start immunotherapy on Wednesday. Which, according to my specialist, will knock it back a bit but not cure it. I am never going to be in remission. I so wanted to ring the bell as well. Life expectancy is not something discussed. If it all goes well then years, if not then...who knows...

So please, check yourself, men, women and children, if you have moles keep an eye on them. Check your skin. Anything that appears odd get it checked.

Now...a quickie...

If anyone has experience of immunotherapy please share your experiences. I know everyone is different but I'd still like to know.

Cheers all.
Click to expand...
Wow. This mirrors my experience practicably word for word. In April 2020 I noticed a mole had got darker and bigger on my shoulder while in the shower. Because of Covid and the thought I may be wasting the NHS's time, I put off going to my GP for advice. The reason for this is, a few years previous, I had sought advice from my GP about a mole that had changed in colour on my thigh. When I got to see the GP, she said, "oh, that's a cute mole". This response made me think I was wasting her time, and afterwards made me reticent to seek advice going forward. In June of 2020, I decided I probably needed to seek medical advice, mainly because of badgering from family members. I sent a photo of the mole to my GP, (different from the previous one), and she asked me to attend the practice within 30 minutes. On examination, she wasn't sure what was going on, so referred me to Withington Hospital for further tests. I had the mole removed there, and was told I would likely receive the results in 6 weeks. When I received a phone call from the consultant to attend the hospital that day,(after only 10 days), I knew something was wrong. I was told then that the results had come back as stage 2 melanoma, and I was then referred to The Christie for further tests. I then had a wider portion of flesh removed from the site where the mole had previously been. I also had some sentinel lymph nodes removed to see if the cancer had spread. Less than 2 weeks later I was asked to attend The Christie for a consultation. I knew then that it was bad news, because before the op, I was told I would hear something after approx 8 weeks, unless they had found something in the biopsy's. I was told I had had stage 3 melanoma, as the cancer was found in one of the lymph nodes. I was then put on a course of immunotherapy (Prembolizumab). Unfortunately, after 5 ( out of 9) treatments, it was suspended, as one of the side effects was colitis and this triggered an episode of a previous condition. I have suffered with ulcerative colitis since 2001, although at the start of the treatment, it was dormant. Since my initial op, and subsequent scans, I have been disease free, although the chances of recurrence are medium to high. Because the immunotherapy treatment is still in it's infancy, they don't know what the optimum amount of treatments are for the best survival prospects. I have my next set of scans in February and just keep my fingers crossed for the best.
I wish you well Bimbo, because I know you will be in good hands, and keep positive thoughts throughout and I'm sure you'll be fine. I know I do.
 
Thank you for all the wishes, I'll be fine, hopefully! Did I mention getting yourselves checked out?

@Bluechipblue I'm having Ipilimumab and nivolumab intravenously 4 times 21 days apart. After that I should be on the same but in pill form. Apart from the Colitis, which sounded horrendous, did you have any other side effects?

Fingers crossed you get the results you need in February.
 
BimboBob said:
Although this seems a weird time of year to discuss this subject, it being the winter and all, I thought I'd share my experience of the last year and a half with you all in the vain hope that a few of you will at least check for any unusual skin blemishes, moles changing colour etc etc.

last April my Wife noticed a mole had gone a bit weird in colour and after a few checks etc etc I had a small op to remove it. I hadn't checked it for ages so never noticed it had gone a funny colour. It was found to be cancerous so I then had a bigger operation to cut out a larger area on my back and the nodes under my right arm as the nuclear dye they put in showed it would probably go there.

All well and good until early this year when one of my three monthly checks revealed that the cancer had not disappeared as first thought but had gone for walkabout into my left armpit and my lung. This is called stage 4. Scary sounding but it only means it's gone somewhere else.

I am now about to start immunotherapy on Wednesday. Which, according to my specialist, will knock it back a bit but not cure it. I am never going to be in remission. I so wanted to ring the bell as well. Life expectancy is not something discussed. If it all goes well then years, if not then...who knows...

So please, check yourself, men, women and children, if you have moles keep an eye on them. Check your skin. Anything that appears odd get it checked.

Now...a quickie...

If anyone has experience of immunotherapy please share your experiences. I know everyone is different but I'd still like to know.

Cheers all.
Click to expand...

I can only wish you and your family all the best and a speedy recovery. You have got this, stay positive and beat the fucker blue.
 
BimboBob said:
Although this seems a weird time of year to discuss this subject, it being the winter and all, I thought I'd share my experience of the last year and a half with you all in the vain hope that a few of you will at least check for any unusual skin blemishes, moles changing colour etc etc.

last April my Wife noticed a mole had gone a bit weird in colour and after a few checks etc etc I had a small op to remove it. I hadn't checked it for ages so never noticed it had gone a funny colour. It was found to be cancerous so I then had a bigger operation to cut out a larger area on my back and the nodes under my right arm as the nuclear dye they put in showed it would probably go there.

All well and good until early this year when one of my three monthly checks revealed that the cancer had not disappeared as first thought but had gone for walkabout into my left armpit and my lung. This is called stage 4. Scary sounding but it only means it's gone somewhere else.

I am now about to start immunotherapy on Wednesday. Which, according to my specialist, will knock it back a bit but not cure it. I am never going to be in remission. I so wanted to ring the bell as well. Life expectancy is not something discussed. If it all goes well then years, if not then...who knows...

So please, check yourself, men, women and children, if you have moles keep an eye on them. Check your skin. Anything that appears odd get it checked.

Now...a quickie...

If anyone has experience of immunotherapy please share your experiences. I know everyone is different but I'd still like to know.

Cheers all.
Click to expand...
Best wishes Bimbobob
I've an op coming up soon for mole removal - hoping it's caught early, but the date's still awaited.
Cheers
 
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