HeidiZ

Hi, I was stage IV Feb 2016 with metastasis pretty much all over including scalp, liver and spleen. I got through all 4 doses of ippi/nivo without many side effects and continued on with keytruda there after and last treatment was August 2017. I go for scans every 6 months and they continue to be stable. Next scans scheduled for November. Fingers crossed. We are very fortunate they now have these medicines available to us. Heidi

Hi, I’ve been stable stage IV since August 2017 and didn’t have any metastases to my lungs or brain but pretty much everywhere else including my liver and spleen. I never had radiation and my MSK doctor told me that I’m still immunocompromised because of my history of cancer and to take precautions.
Heidi

Hi, I used to live in Stony Brook, L.I. but now Port Jeff Sta., I started my treatment 4 years ago today with Chapman at MSK and then switched to Dr. Wolcholk. I’d rather travel into the city and see the very best then go local. I ‘m very happy with him but have to be honest, most of the time I see the Nurse Practitioner.
Heidi

When I had a recurrence in my clnd scar, the scar itself had black spots on it and very tiny spots around the area that looked like freckles.
Heidi

Wow, Celeste you sure have been through so much. Thank you so much for keeping it real because we can learn so much from you. Since I’m a stage IV melanoma patient with vitiligo that’s good to know just in case something like that ever happens to me. I would have probably freaked out but now I know it doesn’t mean I have mucosal melanoma too. You help so many people with your blog and I want to say I really appreciate you and all the information you share with all of us. Take care – Heidi

Hi Lucy, That’s terrific news! I had 4 combo doses and than 16 of keytrudya until my body couldn’t take it anymore due to severe arthritis. I was a little nervous to stop before the 2 year mark but I’ve had good success so far. My last treatment was August 2017 and now I just go for 6 month pet scans. Go celebrate the good news.
Heidi

Hi, my own experience has been that my eosinophils were always high while on treatment and now 2 years after treatment ended they are still slightly increased.
Stage IV since Feb 2016, treatment ended August 2017. NEAD since then.
Heidi

Stage IV February 2016. Had to stop treatment August 2017 after 4 ippi/nivo and 16 keytruda treatments because of too much inflammation. I’ve been getting Pet/ct scans every 6 months now. Next Pet scan scheduled for end of July. Fingers crossed.
HeidiZ

Hi David,

I just emailed you my cell. You can text or call anytime.

Heidi

Hi Suzana65, I also live on Long Island and go to SLoan in the city and same group of doctors who are wonderful. I’m sure they will come up with a great plan for you. I have been stage IV since Feb 2016. It’s totally normal to have this kind of fear so your not alone. Do you live in Nassau or Suffolk County? Heidi

Hi Suzana65, I also live on Long Island and go to SLoan in the city and same group of doctors who are wonderful. I’m sure they will come up with a great plan for you. I have been stage IV since Feb 2016. It’s totally normal to have this kind of fear so your not alone. Do you live in Nassau or Suffolk County? Heidi

Hi, I also had melanoma of the scalp and a neck dissection just like you. Mine progressed pretty quickly also. Went from 3c November 2016 to stage IV Feb 2017. Most of my melanoma was all over my liver and spleen, neck and enlarged lymph nodes throughout my body including my scalp.  My oncologist said let’s fight back hard and we did the first 4 doses of the ippi/nivo and thereafter 16 keytruda.  The shrinking of tumors seemed to disappear very slowly but eventually my pet/ct scans show no cancer activity. Your doctor can add ippi to your opdivo and your tumors can be tested for the Braf+gene that can reduce your tumor burden very quickly. It sounds like you have a terrific support system surrounding you which is great!  Take deep breaths, quiet walks and one day at a time. Heidi

Mike, glad you’re lung surgery is finally behind you and your back on the board posting! Here’s to a smooth 2019 for all of us! Heidi

Sending prayers all day for a speedy and remarkable recovery.

HeidiZ