Stage 4 melanoma Ipi/nivo

Hi. It is scary and I had many sleepless nights. I had a very large tumour burden. Spine,lung and a large one near my kidney. I had targeted tablets for 7 months then progression. I moved onto IPi and nivolumbab and found I had less side effects. I continued with nivo for a few yrs Probably more than I needed but was afraid to stop. I have been off everything now for over 2 yrs and have no evidence of disease. I now have scans every 6 months. So hang in there. If immunotherapy works it is amazing. I do still get anxious waiting for scan results but so far everything has been fine. I found once I started the treatment I decided to enjoy myself. Going where I wanted and taking regular holidays. During treatment I tended to feel tired on certain days and just took it easier. I realise some people had worse side effects than me. Good luck 

Hi Sheila,

I have been where you are it’s horrendous & it’s ok to struggle but good you feel able to reach out . There are many here like you & I .. I find this community so supportive & a great place for info & advice..I often struggle & I’m a year down the road & have got great scan results as a result of ipi & nivo I had 4 session last may/june/July & now I’m on the nivo maintenance does every 2 weeks for another 12 months depending on my scans .

please god it will work for you too. I’ve had lots of side effects but most minor & annoying… aches & pains everywhere chest pain mouth sores skin rashes headaches tinnitus all at different times & not long lasting … speak to you cns as soon as you notice anything different as steroids will deal with most & you don’t need to suffer any additional illness you have enough on your plate. My biggest side effect is adrenal insufficiency & pituitary gland damage which I’m taking daily hydrocortisone for & will be for the rest of my life but it doesn’t affect my treatment & my biggest problem is the fatigue which goes with it but I just nap when I need to & I’m still able to get on with things.

this time last year I was given 6/8 months prognosis without treatment or if treatment didn’t work … I’m still here I’m still fighting & goin on holiday for 2 weeks to Italy next month all going well

so chin up you got this , I don’t know where the strength comes from to cope & face this horrible journey but it does I’m fighting to be here to see my 2 young kids grow up so I do it for them when the goin gets tough 

sending you hugs 

best wishes 

Alli x

Thank you, it’s the unknown future and knowing my life is at risk, I don’t want to even think about it.  I’m trying all I can to try and keep positive.  I love to hear positive stories but I do dwell on the bad  ones too.  We were going to go on a road trip round Switzerland and Germany but obviously can’t go but I want to survive and get more years to see my little granddaughter grow up etc etc. Hearing stories like yours gives me hope, thank you. 

Sheila

Hi Ali, I’d love to be where you are at now, it’s great to hear you’re getting on with your life and going to Italy etc.  I can deal with the side effects if I had outcome like yours.  I was 10 years NED and thought I’d missed a bullet but it was  not to be.  Thank you for your input much appreciated 

Sheila 

Your amazing! Thank you for your kind words of encouragement! Hope it keeps going well for you! 

Thank you for replying.  I am Braf negative so I can’t go on targeted treatment.  I was so relieved to finally get on treatment as I was visiting doctors with big  bruising on breast sore lymph nodes etc but just sent for blood tests.  Once I developed lumps it was a different story.  Given my history of melanoma I think I should have been referred way earlier! 

I just want to extend my life but I hope I get a response like yours   It’s great you’re having a good life now and making the most of it 

Sheila 

Hopefully you will get  to NED again too Sheila, keep strong ..the immunotherapy treatments available now really are amazing 

there are others on here who have had successful outcomes from ipi & nivo also 

we are only ever 1 scan away from trouble so much so I have put off my ct & mri brain scans until the end of June after our holiday  just incase!! so I plan to make as many memories as I can going forward with my family just incase my time is cut short …

Try to something you enjoy  to distract yourself & be kind to yourself …

I found reflexology really relaxing & therapeutic or even just a massage or spa day with a friend 

keep in touch 

always here to chat Alli x

Ipi/Nivo is fantastic stuff. It is the Biggest of the Big Guns and if it has an effect on a person then it is greatly effective. It reduced my tumour burden partly and it stopped all of the cancer growing for now.

It can cause side effects in some people, some of them severe side effects. But rest assured, even if severe side effects come, it will only be for a short time. I had severe effects on my liver after my 2nd dose but I was immediately given steroids and it magically got better! I suffered a bit too long before being given the steroids. I wish I'd reported the incremental changes sooner. 

People only ever get (generally) 4 doses maximum. I was taken off after 2 doses (because of side effects) and switched to just Nivo on it's own.

I'm now exactly 2 years into the treatment for my Stage 4 melanoma. I'm so grateful for this time! All of the side effects settled down in the end. I just have some challenging fatigue and have changed my lifestyle. I still work full time and go on holidays although I'm more tired more easily. 

I love Ipi/Nivo. I hope you will too. Like others have said, report any small changes immediately. Don't suffer. Don' 'push through' anything. It's the nurses' job to tell you whether what you're reporting is significant or not, so don't second guess yourself. Just ask them! 

I wish you the best of luck with your treatment. I hope you get the care you need.

Warm wishes,

Dots

Hi Dots

I hope I get a good response because this dual immunotherapy is giving me such a sore mouth.  I’m trying bonjela and Difflam as recommended by the nurse but still suffering.  I keep looking at the bigger picture and know I really have no choice but to endure.  

Reading your story is so positive because being Stage 4 and having noticeable tumours I have to be strong.  Thanks for sharing your story,  it does give me encouragement in dealing with this treatment.

Sheila 

Also did anyone get a sore tongue on Ipi/nivo.  Any remedies or tips please. My appetite isn’t great so hoping to overcome this. 

Sheila