Marilyn Nolan

Hi cristinad

Congratulations on getting through all 4 ipi nivo treatments.  I am embarking on this journey beginning this morning with my first combo treatment.  I have taken pembro alone and made it through 3 treatments with terrible colitis (diarrhea) which made it almost impossible for me to leave my house.  I am now on inflixumab to treat the colitis and it is better.  I want to say thanks for sharing your experience with the group and understand everyone has very different experiences with the combo but have heard its pretty tough.

what is the anti nausea med you had luck with?  I want to ensure I get meds that help from my oncologist so I have what I need at home.  Right now all i have is Zofran –  did that work for you?  I have had luck with the protein drink called core power 24 from fairlife.  Tastes great.  Better ingredients than ensure.  Walmart carries it and can ship it to your home.  I hope you keep on getting  better and finally get to say no new evidence of disease.

Best to you as you as you continue on this difficult journey.

-Marilyn

I am not looking forward to the fatigue since I still work full time but at least work from home, so it is manageable.  Was it the 2nd treatment that hit you hardest?  35 pounds is a lot of weight to lose!

thank you so much for sharing the details of your treatment.  I am stage 4 metastatic melanoma of unknown primary and was stage 3b when first diagnosed (pembro failed me and the disease metastasized to the spine and needed spinal surgery before this treatment.). I’m hopeful this will work for me.

Hi Ellen,

I’m Marilyn, also a stage 4 melanoma patient of unknown primary origin.  I just recently was upgraded(downgraded?) from 3b to 4 after taking 5 -6 doses of Keytruda as adjuvant therapy.  I got some of the side effects; GI stuff was the worst and I had to add a biological ‘inflixumab’ to help with the colitis, now something spread to my L5 spinal disk and I had to have back surgery to remove a malignant tumor (they told me 80% of these kinds of tumors that show up on scans are benign, but not mine).  It all began with a lump on the back of my neck and I had 2 neck dissection surgeries (Aug 2020 and Jan 2021 – after they found another swollen lymph node in the same place deeper down where they already did the surgery).  So there were some delays starting the Keytruda, but it was all good for a while and since there was nothing to watch on the scans, they didn’t know whether or not it was working; but thought it must be.  Anyway, wrong and now 6 weeks post serious back surgery and 2 weeks of radiation – ending this week; I am waiting to see what the new treatment will be –  no doubt a combo of 2 immunotherapies which I hope will work.

I just want to reassure you that the Keytruda treatments were nothing to worry about and had I not gotten the colitis, I would have stayed on it, but because of all the interruptions in the treatments due to the side effects, I think the Keytruda didn’t get its chance to do its thing.  Remember to stay in touch with your onc team so they can treat any of these inflammations that crop up to keep you going with your immunotherapy.  Best of luck to you and keep on fighting.

Also, can you please let me know what your first treatment plan was, if you care to share – even though the ‘unknown primary origin’ type that I have makes it more difficult to treat.

-Marilyn

 

Dear Christinad,

Thanks so much for all this very valuable information from your experience and for mentioning your friends had such good luck.

I appreciate this more than you will ever know.

I am so far doing OK, but it is only day 2.  I will try to keep posting to share my experience with others.

Wish you continued success with the single treatment and all through your treatment.

I am also stage 4 unknown primary and was wondering if you care to share the meds he took that worked and his experience with them.

i am about to start Yervoy/Opdivo combo since I have Mets to the spine and have just undergone back surgery and radiation to remove the tumor.  I also had neck lymph node surgery twice to remove malignant nodes.  Then did Pembro alone only to find out the spine had a tumor; so the pembro alone did not work.

Would love to hear others stories about successful treatment and how bad the side effects were.

Thanks for sharing and best of luck with your good news.  Hope to be able to share this exciting news someday soon!

Marilyn

 

Hi All,

I am stage 4 unknown primary and wonder if anyone on the forum would like to share their treatments which were successfull!

 

I have had 5-6 Keytruda infusions and then got a malignant tumor on my L5 lumbar spine.   Had to have surgery and now radiation.   Wondering what the next treatment will be.  Anyone with clear scans please share with me what worked for you, if you don’t mind.   You give me hope and that is so appreciated even at this point.

Congrats to all and so happy to hear so many good positive postings.

Thanks!

Marilyn (MelMal)