1. < Cancer

Stage IV melanoma: What's your experience with immunotherapy?

Posted by Annie @mlenney167, May 26, 2021

Trying to help someone with a recent diagnosis - Interested in patients’ experience with immunotherapy or other treatments.

Interested in more discussions like this? Go to the Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 6, 2021
In reply to @emmasmimi123 "I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small..." + (show)
@emmasmimi123

I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small tissue involvement. After four immunotherapy treatments, Pet Scan showed great results in liver, breast, lung and initial tissue on shoulder, but new places along the spine. Is it unusual to have positive & negative results?

Jump to this post

@emmasmimi123, I hope you'll also ask that question about positive and negative results of your oncologist. I would be interested in what you learn. I'm also tagging @bboseski12 and @texastribble on this discussion.

You may be interested in this related discussion that @mlenney167 started:
- Stage IV melanoma: What's your experience with immunotherapy? https://connect.mayoclinic.org/discussion/stage-iv-melanoma/

Emma, when do you meet with your oncologist again? How many more treatments do you have?

REPLY
1 reply
bboseski12 | @bboseski12 | Sep 6, 2021
In reply to @colleenyoung "@emmasmimi123, I hope you'll also ask that question about positive and negative results of your oncologist...." + (show)
@colleenyoung

@emmasmimi123, I hope you'll also ask that question about positive and negative results of your oncologist. I would be interested in what you learn. I'm also tagging @bboseski12 and @texastribble on this discussion.

You may be interested in this related discussion that @mlenney167 started:
- Stage IV melanoma: What's your experience with immunotherapy? https://connect.mayoclinic.org/discussion/stage-iv-melanoma/

Emma, when do you meet with your oncologist again? How many more treatments do you have?

Jump to this post

It sounds like you are starting the maintenance phase of dosing for immunotherapy. Congratulations! This should mean you have had interval re-stagging imaging studies such as PET/CT or plan CT that revealed stable disease “no growth/metastasis” or response “ decrease in tumor burden or “ shrinkage”. Not to mention you tolerated the immunotherapy without any significant side effects.
This is great news!

REPLY
1 reply
emmasmimi123 | @emmasmimi123 | Sep 7, 2021
In reply to @bboseski12 "It sounds like you are starting the maintenance phase of dosing for immunotherapy. Congratulations! This should..." + (show)
@bboseski12

It sounds like you are starting the maintenance phase of dosing for immunotherapy. Congratulations! This should mean you have had interval re-stagging imaging studies such as PET/CT or plan CT that revealed stable disease “no growth/metastasis” or response “ decrease in tumor burden or “ shrinkage”. Not to mention you tolerated the immunotherapy without any significant side effects.
This is great news!

Jump to this post

Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures consistent with progression of disease, from PetScan report. I’m wondering if there is an additional intervention or therapy.

REPLY
2 replies
Annie | @mlenney167 | Sep 7, 2021
In reply to @emmasmimi123 "Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures..." + (show)
@emmasmimi123

Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures consistent with progression of disease, from PetScan report. I’m wondering if there is an additional intervention or therapy.

Jump to this post

I’m so sorry to hear this terrible news. I hope there are treatment options to consider. Sending prayers your way

REPLY
1 reply
emmasmimi123 | @emmasmimi123 | Sep 7, 2021
In reply to @mlenney167 "I’m so sorry to hear this terrible news. I hope there are treatment options to consider...." + (show)
@mlenney167

I’m so sorry to hear this terrible news. I hope there are treatment options to consider. Sending prayers your way

Jump to this post

Thank you. Just met with Dr. Will continue with planned treatment and scan again in 2 months. He definitely wasn’t as concerned as I was. Trying to stay positive!

REPLY
1 reply
Annie | @mlenney167 | Sep 7, 2021
In reply to @emmasmimi123 "Thank you. Just met with Dr. Will continue with planned treatment and scan again in 2..." + (show)
@emmasmimi123

Thank you. Just met with Dr. Will continue with planned treatment and scan again in 2 months. He definitely wasn’t as concerned as I was. Trying to stay positive!

Jump to this post

Staying positive is key! Are you at Mayo Clinic .... wish we were.

REPLY
bboseski12 | @bboseski12 | Sep 8, 2021
In reply to @emmasmimi123 "Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures..." + (show)
@emmasmimi123

Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures consistent with progression of disease, from PetScan report. I’m wondering if there is an additional intervention or therapy.

Jump to this post

I’m sorry to hear that. Did the oncologist do any molecular testing on the tumor tissue to see if you have any targetable mutations? An alternative treatment option are clinical trials. Generally you will be required to have a “washout” period prior to enrolling. This means no treatment for either 2 or 4 weeks.
I would ask about potential clinical trial options or start researching some clinical trials in your area at Clinicaltrials.gov.
Good luck

REPLY
emmasmimi123 | @emmasmimi123 | Sep 8, 2021
In reply to @emmasmimi123 "I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small..." + (show)
@emmasmimi123

I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small tissue involvement. After four immunotherapy treatments, Pet Scan showed great results in liver, breast, lung and initial tissue on shoulder, but new places along the spine. Is it unusual to have positive & negative results?

Jump to this post

I was told that because I was actually showing progress I would not be enrolled in a clinical trial. I wondered about the cancer vaccine and immunotherapy trial

REPLY
bboseski12 | @bboseski12 | Sep 9, 2021
In reply to @emmasmimi123 "I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small..." + (show)
@emmasmimi123

I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small tissue involvement. After four immunotherapy treatments, Pet Scan showed great results in liver, breast, lung and initial tissue on shoulder, but new places along the spine. Is it unusual to have positive & negative results?

Jump to this post

If there are new areas of disease that were not identified on previous imaging studies it is considered disease progression. With immunotherapy drugs like Yevory and Nivo there can be what is called “ inflammatory response” but generally if there are multiple areas of new disease the oncologist should try an alternative treatment. Vaccines are an option but most of them are only used in clinical trials.
Try to remember all drugs have to go through the clinical trial process for approval. It wasn’t that long ago that I worked on the studies for the very same drugs you are receiving as standard of care now. Best of luck!

REPLY
emmasmimi123 | @emmasmimi123 | Sep 13, 2021
In reply to @emmasmimi123 "I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small..." + (show)
@emmasmimi123

I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small tissue involvement. After four immunotherapy treatments, Pet Scan showed great results in liver, breast, lung and initial tissue on shoulder, but new places along the spine. Is it unusual to have positive & negative results?

Jump to this post

Thank you for your comments. After another treatment I will have another scan. If it shows continued progression should I insist on an alternate treatment plan?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.