Battling Metastatic Melanoma is a Lonely Experience

Hi BTM,
I have always received great support in this forum. Melanoma is one word but has so many facets. What has your treatment been so far? My info is in my bio.
In the forum You can search topics such as side effects and learn what others done to deal with it. For me, my latest issue after 18 months, keytruda gifted me with a nasty bout of diarrhea. Treated with steroids and Imodium, plus daily calls with my nurse for a full week. It’s day 26 and now fewer loose stools. I had my last infusion last month so keytruda got rid of the cancer and I want to heal from keytruda.
Hang in there! Cindy

Hi there,
Welcome to the forum. There are lots of kind and knowledgeable folks here. Hopefully it will be less lonely experience for you.
I always wonder how do they come up with the names of the medications? I never heard of this medication. Interesting choice for your doctor instead of Optivo/Yervoy. It’s hard to remember and harder to pronounce the names of these medications. 😀
I m getting Optivo/Yervoy after failed Keytruda and after targeted therapy stopped working Braftovi/Mektovi about 7 months of treatment.
Mets in bones, couple in liver, couple brain ones treated with SRS.
Lots of pain, not sure if it’s arthritides/ inflammation pain in joints or it’s cancer pain or both. In two months I turned from active vibrant woman into a handicap who uses her hands to get her legs(physically pulling them by the pants)to get in a car.
I m not comfortable sleeping in a bed anymore. I sleep on a couch propped with pillows. Every time I need to roll from my back to my side I wake up and reposition myself.
Morphine and oxycodone around the clock. I m thinking if I haven’t gotten worse since I started treatment, I finished cycle 3, maybe I still have a chance and I will better?!

I m hoping the treatment will work for you. Good luck to you. You are not alone! Best wishes and positive vibes to you.

Dear Brian,

Sorry for not writing earlier. There are many fellow sufferers here but unfortunately in recent months less postings and less activity than 3-4 years ago, when this Board was super helpful.

We have some experts here like Celeste and Ed and others who are good on the technical side and on the latest treatments. I dont know NKTR-214 but I know some others have tried it. As Daisy mentioned I think the standard would be adding ipi to nivo rather than nktr-214. But ipi is quite toxic and so can give rise to side effects. There are new anti-lag3 treatments (relatlimab) too which I think are in trials now and you can add to nivo. Results have come out in the last few months and show promise.

That said while ipi-nivo is standard I failed ipi by itself (side effects) so I was put onto keytruda (helped but didnt resolve) and then added t-vec to keytruda which seems to have worked. So the ideas of adding something to nivo, like nktr-214, can make sense. You can use the search function on this board and type in nktr and lots of posts came up. Also try celeste’s blog and search there, she will have summarized some articles.

BTW on keytruda I did have side effects, like most of us here, but not too serious or I just tried to ignore them. My tumour burden though was light. Adding t-vec gave me pretty bad fever, esp from the second treatment onwards and i guess i was worn out and would sleep some weekend afternoons. But the side effects can be a sign the treatment is working.

I hope that your tumour burden is light and not spread too much. (I worry for Daisy, I am lucky and did not have to experience this). Also of course you need to check if you have BRAF as this gives you extra options. Celeste’s blog has a primer / overview of various treatments.

If you have specific questions please post them and someone here will try to help out. Sadly the board is less active now, so it may take time. But others may read but not be able to answer, but I know they will be concerned for you and wishing you the best.

Good luck and I hope the infusions go well
Mark

Hello Brian,

Sorry for all that you are enduring (from melanoma and the treatment effects) but thanks ever so much for being a rattie and know that there are many of us in your shoes! I was first diagnosed with Stage IIIb melanoma in 2003. However, back in the olden days there was nothing to do except cut it out and/or take interferon for a year which made you sick as a dog and had zero impact on survival. I opted out of the last and just did what we called cherry picking that year and again in 2007. In 2010 I advanced to Stage IV with lung, brain and tonsilar mets. After zapping my brain and cutting out the rest, I was lucky to find a Nivolumab (Opdivo) as a single agent phase 1 trial 6 months later. None of the current immunotherapies or targeted therapies were FDA approved at that time. However, my fellow ratties and I did surprisingly well! We didn’t grow three heads and many of us are still alive and kicking. I had my last dose of nivo in June of 2013 and have been NED for melanoma ever since. So…there is HOPE!!! Yes, side effects and melanoma suck great big green stinky hairy wizard balls!!! I dealt with fatigue, arthralgias, rashes, wheezing, mouth ulcers – but continued to work and take care of my family – and I’m still here!!!!

I’ve been reporting on NKTR-214 since 2013, though given its relative newness in melanoma world there are few folks on that therapy on this forum. Here are some reports if you are interested: Bempeg and the PIVOT trial

An important thing to remember however when reading treatment data is to compare apples to apples. That applies to treatment as well as melanoma stage. Melanoma patients who are stage II obviously do much better than folks who are Stage IV with advanced disease. So you have to keep that sort of thing in mind.

Your therapy is very promising. Especially when you know that nivo alone can work for advanced melanoma patients! So you are getting that – plus some! Take care. I wish you my best. Celeste

Hi Brian,
I agree with Celeste. You are getting nivo and something else so it sounds promising.
I would ask my doctor why is the preference of this trial vs ipi/nivo?

Please don’t look at ageing itself. I look at it as a disease process. I might be in a bad shape now but I will bounce back if I beat this thing. It’s hard not to be able to play with your children the way you used to or would like to. I have couple high schoolers and a cute little grandson. I know, lol. I m not even 50 y.o. Feels weird. I feel bad not being able to pick him up or chase him around.
The important thing is to beat this darn melanoma and then everything will come around. Human body is an amazing thing. We can put ourselves back together pretty nicely once certain conditions are met.
Unfortunately I don’t know if my treatment is working. I had 3 infusions and hanging in limbo until we will do 4 one, then it’s the time to see if it worked or not. I m hoping since I m not upping up on my pain meds maybe I m not getting worse.🙏The trend in LDH is looking hopeful.
Hang in there! Hugs!

To set the record straight, the grandkid is my oldest son’s son not my teens kid. Lol.

You are very welcome Brian!
Post questions, talk, connect.
It does feel little less lonely to talk to people in the same situation.
Positive things happen at the time of need I m certain of it.
I recently met a woman while walking my pup and she had became my angel suppport person. I feel she was sent by higher power
In a time of need!
Stay positive! I told myself I can be miserable and scared or I can enjoy and be greatful for every little thing I still can do for myself and for every day seeing my family.

Hi Brian,
I am a fellow OHSU patient. I’m currently going to the Knight Cancer clinic in Beaverton. I had a really great oncologist (Gary Takahashi) who was a victim of this vaccine mandate mess. I’m currently being seen by Dr Anderson in Portland. Seems like a really good Doc who listens. My dermatologist is Dr Berry and her team (she was a previous Mel researcher).
I was a 3C until I advanced on Nivo after 10 months. Did 3 doses of Ipi which seemed to be working. After finding new spots, I was put on targeted therapy (since 7/2021). Several nodes have shrunk, however I have a couple that a stubborn in my lungs.

I live out on the coast so I’m local.. I try not to go to Portland or through Portland 😁. DM me.. my email should be in my bio
Bruce

Hi Brain,

I had a wide excision removed on the back of my leg 1/5/16 It was stage 1B. I was 40. Assumed after 6 years was in the clear from that sight….I have been seen at Moffitt for my skin checks since 2016. My last apt was September and all good. I felt a swollen lymph node in my groin on 1/6/22. I was diagnosed on 1/12/22 with a reassurance in the lymph node so now stage 3b. I started treatment on 1/29/22 in a clinical trail at Moffitt. I was very lucky I was already in the system so things moved very fast. I am doing Braf/Mek 12 pill combo neo adjunct. I have been every week for blood work since starting b/c my liver enzymes jumped up from dosage. Initially had a lot of side effects but my body seems to be adjusting. Will know more tomorrow re liver if I have to cut dose or stay on the initial dose.

I am just over a month over diagnosis and I feel very isolated in my experience as well. I posted about the trial on here a couple of weeks ago and found someone else participating in the same trial at Moffitt. We both had appointments last Thursday and were able to meet up. It’s great having someone to text and chat with who can relate since on the same plan. Also super lucky b/c she is very upbeat and positive. Hasn’t been an easy month but glad I joined the forum b/c it has given me someone else who understands the entire process and the heartache of it all.

Hang in there. Happy to chat offline if you want.

MM

Hi Max…

Neo-adjuvant means giving a medicine before all tumor has been removed. Here are some post/articles if you are interested: neoadjuvant treatments may be targeted (BRAF/MEK) or immunotherapy

Hope that helps. Celeste

Hang in there. I was diagnosed in Feb 2013 with stage 3b mel and opted for surgery and nothing else. I had a 1 year old and my wife was pregnant-I was crushed. There were not a ton of treatment options and my natural tilt is towards worst case scenarios. I found this forum and it was a life saver. People in similar situations sharing stories and knowledge-it’s an outstanding place to be! By the way, I am cancer free and only look in the rear view mirror on my diagnosis anniversary-9 years ago! Heck-I’ve even forgot about mitosis rates and waking up at 3am to google some treatment that may be coming on the market. You will get through this!