Stage 4 melanoma - is anyone else going through this?

I'm Jamie and 34 years old, last year I went into remission, this was in September after having stage 3 melanoma, my oncologist saw my last CT scan results and was happy with it, nothing was there and also finished my treatment, I was happy when I though I was clear.

End of December and beginning of January I come down with alot of pain in my stomach and had alot of nausea and sickness, got rushed into hospital because the pain was around my appendix area, had a CT scan of the area, within an hour I had 2 oncologist Dr come to my ward and explain to me there is newly discovered lesions on my liver, spleen and adrenal gland and this happened within a few months, I was shocked, wasn't emotional, sort of had to stay strong as now iv got stage 4 melanoma, the plan of action was immunotherapy, had my first treatment on the 27th January, didn't go very well, I got an infection on my chest, which is cleared now then afterwards it hit my kidneys, so I'm currently on steroids but I'm currently being weaned off them as my kidney levels are coming down( creatine) so it's currently the 23rd February, just waiting to come off my steroids so I can start my second round, hopefully it goes well.

Is anyone else going through this similar situation? 

Parents
  • Hi Jamie, 

    Seems we are in a similar situation with stage 4 melanoma.  Im 44 and had it 15 years ago, had the mole cut away and a daily IV of Interferon for 5 weeks.  I discovered a lump in my thigh and have now been diagnosed with metastatic melanoma.  I am due to have it removed next week and start on the same treatment as you.  I would be interested to keep in touch to see how you are managing through it. I can see you have had some issues with the treatment and honestly mentally I am on the edge about it all.

Reply
  • Hi Jamie, 

    Seems we are in a similar situation with stage 4 melanoma.  Im 44 and had it 15 years ago, had the mole cut away and a daily IV of Interferon for 5 weeks.  I discovered a lump in my thigh and have now been diagnosed with metastatic melanoma.  I am due to have it removed next week and start on the same treatment as you.  I would be interested to keep in touch to see how you are managing through it. I can see you have had some issues with the treatment and honestly mentally I am on the edge about it all.

Children
  • Hi, sorry to hear you've discovered this, it's not nice news to hear, I was the same when I found out it spread through multiple organs. Honestly immunotherapy is the best way to do it, first time round, I had some bad side effects, I was put on steroids and recovered pretty quick I recently had my 2nd dose of ipi/nivo as they wanted me to re challenge this for me, I'm week 2 into my 2nd dose, so far iv had no side affects, I'm having my bloods checked regularly just incase I have kidney toxicity again. Just remember to ask loads of questions to your oncologist or nurse they help alot, that's what I did before my first treatment, if you wanna know anything else let me know :)

  • Thank you for the reply.  Yes mentally to know its gone through your organs is quite hard to get your head around.  I have my op this Wednesday and I gather the treatment will start the beginning of June.  Good news about the second dose for you.  I will keep my fingers crossed it keeps like that.  I was thinking maybe the first dose would be ok and it gets worse. I suppose everyone is different.  I really appreciate your reply.  I hope you dont mind me keeping in touch..

  • At first it is hard to grasp how far it's spread but with the treatment and the kind words from my oncologist and specialist nurse, it makes the situation alot better. I really hope your first treatment goes very well and you have minimal to no side affects, they should give you a book of information on what to look out for on side affects. It's really helpful. That's no problem at all, I'm happy to tell you on my situation and what's to come. Keep my posted on how you get on after your surgery.

  • Will do thanks Jamie.  My name is Natalie  :-)

  • It's nice to meet you Natalie :)

  • Hi Natalie, how did the surgery go?

  • Hey Jamie thanks for the message. It went well. Im a bit sore but so glad its finally been removed. Its been a long time coming lol. Hopefully if I heal ok I will start treatment in the next few weeks. How are you keeping? 

  • I'm glad it went well you are gonna smash this treatment when you start :). I had to go into hospital for an emergency colonoscopy for suspected colitis as my stomach was hurting alot, they raised my steroids for the day, iv been checked all over and there's no concern, the problem is gone away and now I'm back down to 10 mg of my steroids. I didn't need this as iv got my 3rd cycle coming up soon but it looks like it's still going ahead 

  • Aw Jamie, sounds like your going through it.  How are you feeling now?

  • Pretty good now, luckily they couldn't find anything so my oncologist put me through for my 3rd dose of ipi/nivo which happened yesterday and my steroids have been reduced to 7.5mg so I'm close to finishing them. So far so good. How's your recovery coming along?