Malignant Melanoma Metassis

Hi sorry to hear about your diagnosis. I had melanoma which spread to my lymph node and had a left groin dissection where the doctor took out some of my nodes. I then developed a tumour near my kidney but it couldn’t be removed because of its nature as too many blood vessels attached I have been on immunotherapy for over 3 years. Initially the dam trab tablets which I personally didn’t get on with but I have read others have tolerated them   I then had ipi and Nivolumab together for 4 treatments. My tumour shrunk considerably and I am now on just Nivolumab every 4 weeks. My scans shows my tumours continue to shrink or remain stable. A pet scan last year showed the tumour maybe dead but to be cautious I am on the treatment indefinitely. I didn’t inform you that I had tumours in my lung and near my spine and both are gone. 

People react differently to treatment. I was one of the lucky ones who didn’t suffer too much from side effects. I developed vitiligo on my arms which is more noticeable in Summer. I had a slight rash and slight joint ache. Now I only have tiredness after the infusion   At first I was anxious and used to go to my local cancer help centre. I now try to live my life as normal as possible and go walking everyday. 

I also developed lymphodema in one leg and have to manage it. I at first went to see a specialist and had various treatments but now have learnt to live  with it .I could and probably should wear specialist support stockings but I am afraid I find them restricting and uncomfortable.

i do wish you well and I hope this has reassured you a little. Write down all your questions as I found that helps or I find once I get in the room with the consultant my mind tends to go blank. 

Hi

Thank you so much

This is really helpful I am so glad to hear you have a positive outlook I know we are all different & how we react to treatment depends a lot on the individual . It must have been worrying for you when another tumor was discovered on your kidneys It helps a lot to hear of how other people are getting on. My tumour is in my right groin & im praying that’s it . How did they find out about the one on your kidneys ? Was it by a scan & how long after your surgery was it discovered . 
 Thank you again & I too wish you well on your road to recovery . 

Labbie

It was 7 years after my groin disection. I had regular check ups and scans for 5 years then just yearly checkups. I began to loose a lot of weight and my doctor put it down to stress and even when I asked the doctor if it could be melanoma she  replied highly unlikely. I was checked at the hospital and the consultant noticed my stomach was lumpy and I had a scan. I had a 18cm tumour near my kidney a tumour in my lungs and one near my spine where I was told at first I would need an operation to strengthen my spine. I didn’t have the operation and the tablets shrunk the tumour and eventually it disappeared When these treatments work they are amazing and feel so grateful to be able to have immunotherapy.  My advise to anyone is to always ask if you are worried about anything no matter how small you think it is.

Hi Labbie, I’m sorry to hear about your diagnosis, but glad you’ve found us here ! 

I looked to see if you’d completed your profile, when you are ready and if you want to you just click on your user name press the edit button type a bit and press save. I was looking to see if you had a primary melanoma or wether you were diagnosed when the lump came up. My diagnosis was 6 years ago now Metastatic Melanoma occult primary, no primary found but scans revealed lots of enlarged lymph nodes in pelvic and abdominal nodes to many to do surgery on so I started on targeted therapy and then immunotherapy. I have had surgery to remove a groin lymph node a few years later but it was done laparoscopically as part of a trial, which I don’t thing is the norm, the difference being I have no experience of a drain for fluid and my healing and walking was quicker. My story is in my profile.

There are a few people on here who have had melanoma just in a few lymph nodes and had them removed and then have either started or are about to start immunotherapy after that, as a preventative treatment (adjuvant) you will probably see their posts as you have a little look through the group. You might want to add a line to ask any questions or say hello, unless of course they pop in here to say hello. 

Its good you have a date for surgery, (my immunotherapy started up again about 3 weeks after my surgery) I always thing it’s good when you can look at things moving on and being something positive to treat you.