› Forums › General Melanoma Community › Pneumonitis after 1st Immunotherapy Treatment
- This topic has 8 replies, 4 voices, and was last updated 6 years, 6 months ago by
Sar4h.
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- December 15, 2018 at 12:00 am
Hi all,I have been trawling through 100s of posts on this forum over the past month and I just wanted to say that I think this forum is a great place for support, reassurance and advice – so thank you.
Following a seizure in October my partner (45 years old) was diagnosed with stage 4 melanoma with 3 brain mets and 1 lung met in November. He had brain surgery to remover the larger tumour to give his brain some ‘space’. One down – 3 to go.
He had his first dual immunotherapy (ipil & nivo) on Wed 5th Dec.
I had to rush him to A&E on Tuesday 11th Dec following a temperature of 39.3, a skin rash and a slight cough. It turns out he has pneumonitis.
He is currently recovering very well in hospital from these side effects and we are hoping to have him home for Christmas to celebrate our 5 month old daughters 1st christmas together as best as possible.The Dr’s have advised that he will have to come off of immunotherapy and try an alternative treatment. He is BRAF positive which is good as that gives us another option.
However, I am petrified.
I have read so many great stories of people of immunotherapy surviving many years with Melenoma or NED and was hoping the same for us but with immunotherapy now out the window I worry that his chances have been halved. Am I wrong in thinking this? Have there been good survival stories on just BRAF targeted treatment and stereotactic radiotherapy?If the BRAF and radiotherapy are successful and the melanoma was to return, would immunotherapy be an option in the future still?
He is my absolute world and such a good daddy to our beautiful daughter. I can’t bear the thought of her not knowing him and what an amazing person he is.
We are in the UK so we are a bit behind you guys in the USA in terms of melanoma treatment plus I think some treatments are not available on the NHS so I worry the doctors won’t tell us about them but we do have private health care that we can fall back on if needed. I will do anything for him.
Thank you in advance for any help or support you can give. I’m broken and am not sure where to turn. Xx
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- December 15, 2018 at 12:53 am
Ipi & nivo immunotherapy for melanoma has been successful some people who could complete only one treatment.
Could your partner continue receiving only nivo? My first ipi & nivo infusion caused very bad diarrhea and too much wait loss. My oncologist prescribed Prednisone to control my side effects and postponed my second ipi & nivo treatment until 9 weeks after my first one. I needed to regain weight. I received only nivo at 3 weeks and 6 weeks after my first ipi & nivo infusion. I completed all 4 ipi & nivo treatments and continue receiving nivo.
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- December 17, 2018 at 11:21 am
Thank you for the response Edwin.
Its good to hear that people have responded well on one treatment, fingers crossed he will follow that trait. Its just so scary to think that we may not have the dual treatment available that I’ve read so many good things about. I think I just feel in the dark again with it all.
Sorry to hear you also experienced side effects, I do hope you are now doing a lot better. -
- December 17, 2018 at 2:29 pm
My November 5, 2015 PET scan showed cancer in 2 ribs. I began receiving Keytruda immunotherapy. Walking became very painful in February 2016. My March 1, 2016 PET scan showed cancer in my spine, hips, ribs, femurs and right shoulder. I began Yervoy + Opdivo immunotherapy on April 1, 2016. Due to very sever side effects my oncologist postponed my 2nd infusion of Yervoy + Opdivo until June 3, 2016 and reduced the dose of Yervoy by 50% for my remaining 3 combo treatments. Walking became less painful in May 2016. So, I think my first combo treatment helped shrink melanoma tumors. My August 2016 PET scan showed my tumors were less active. My bone cancer seems to be gone and I have been healthy for over 2 years. I do have cancer under my left jaw and will have a PET scan on December 27.
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- December 17, 2018 at 4:49 pm
Hi Edwin,
Thank you for sharing the details of your journey. I’m so pleased to read that you are much better than at the beginning of your journey.
I wasn’t aware that you could just have 50% yervoy so I will ask about that also.
We will be thinking of you on the 27th December and sending you best wishes for the results of your PET scan.
Thank you again for your advice.
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- December 15, 2018 at 1:38 am
Hi Sarah,
I also was diagnosed with Stage IV (2 brain mets and 27 additional tumors). I was able to complete two combo treatments before side effects. There's definitely hope still with even one combo treatment. I went back on nivo only with no major side effects. I'll spare you all the details but the two original brain mets are gone and nivo plus radiation got the one that grew while I was off treatment.
I hope my story gives you a little hope. The only way I do this is one small bit at a time. The doctors move very swiftly and sometimes it doesn't give us any time to process what's happening.
I hope your partner is home for the holidays. Good wishes to you both.
Jennifer
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- December 17, 2018 at 11:23 am
Hi Jennifer,
Thank you so much for the positive feedback. Whilst I don’t wish this awful thing on anyone, it’s good to hear that people that have experienced side effects have gone on to be successful with other treatments. I think I need to do some reading into nivo only.
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- December 15, 2018 at 3:39 am
Hi Sarah, I’m so very sorry for what you and your husband are dealing with. I was diagnosed as Stage 4, with a very large brain tumor, less than 3 weeks after my daughter was born in February so I know the horror of having a beautiful life interrupted by the horrible. While I haven’t experienced exactly what you’re going through I will echo what others have said — there are several people who have had to stop the combo after one dose and still had a great response. If I were in your shoes, here’s what I would do (although, please note there is no “right” answer for everyone, this is what I personally would do).
1) Get the bed of the tumor that was removed radiated and ask about radiation to the other spots. There have been several studies that show radiation and immunotherapy work better together.
2) Instead of moving directly to another therapy, see if you can proceed with just Nivo. Then, maybe when your husband has recovered, he can try to add in ipi again.
3) With all the BRAF inhibitors available, there are several people who have had long-term success on those. From my understanding, it seems like people with lesser tumor burden do better. Additionally, there are people who are able to use a BRAF inhibitor for a short period of time and then switch to an immunotherapy drug before the inhibitor stops working.
You’re at the beginning of this crazy, stupid adventure and there are still lots of good options for you and your husband!
I’ll be rooting for you both.
Amanda
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- December 17, 2018 at 11:28 am
Oh Amanda, I am sorry to hear your story. How on earth did you cope.
Im struggling with my little one at times and I’m just the caregiver. It’s so tough when they are so blissfully unaware.Thank you for the advice. We have an appointment with the oncologist on Wednesday so I will definitely discuss the radiotherapy and nivo only options with him.
Thank you again and all the best with your treatment. Hope your little one is well too and has a lovely first Christmas.
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