MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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betsyl's picture
Replies 4
Last reply 11/4/2018 - 2:04pm

My husband’s Keytruda treatment stopped working. The good news is he still only has one measurable spot, and a surgeon is going to cut it out. Then he may or may not need radiation. After that, it will be watch and wait.

The Keytruda shrank the tumor by about half, making the surgery less complicated. The surgery decision is because the tumor started growing again while he was still on Keytruda, and also because he was having bad immune side effects.

Instead of surgery, they could try a different systemic immunotherapy, but with my husband’s medical history, they're too afraid to try it on him.

They are saying that in the future, there's a very high likelihood that new tumors will pop up in different places, but maybe that won't happen, and if it does it might be years from now. Or it might happen fast. Uncertainty is the water we swim in.

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Rick from NC's picture
Replies 8
Last reply 11/4/2018 - 6:27pm

I just realized today that it's now been 27 years since that day in 1991 that I was diagnosed with Stage 4 disease, with multiple mets to both lungs and numerous sub-q tumors.  I was metastatic at diagnosis.  My doc referred me to Duke, who suggested that I go to NIH.  I was accepted as a patient there, and was most fortunate to have a complete response to IL-2.  Since then, I've had a squamous cell CA and several basal cells, with 3 Mohs surgeries, but I've never had any more melanoma.  I fully recognize how fortunate I was, and I'm very grateful.  I still read this board, and my best wishes go out to all of you.

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AMcReader's picture
Replies 9
Last reply 11/4/2018 - 12:28pm

Hello fellow fighters,

I got the results of my latest body scans and although one of the tumors has shrunk some more, another one has grown by 1CM since July. It wasn’t terrible news but, of course, not what we were hoping for. My oncologist still believes Nivo has been working wonders for me — after brain surgery in March that removed a fist-sized tumor in it’s entirety a new tumor popped up in the month between that surgery and when I did my MRI for SRS and since the SRS and Nivo my brain has been NED. So, since the Nivo seems to be working everywhere else, she doesn’t want to add in Ipi just yet and instead wants to remove the tumors that remain in my lungs, rendering me NED. Her hesitation with adding Ipi is that I am young and, as we all know, the effects of Ipi are no joke and can require long-term steroid use. I’m in agreement with this plan but I’m hoping to hear from those of you who have had robotic lung surgery:

1. How long was your recovery post-surgery?

2. I’m told the incisions should be small but how long will I need to dodge the hugs and climbing of my 8month old?

3. If you have a desk job where you can occasionally work from home, how soon we’re you able to go back to work?

4. Anything else I should know or ask about before meeting with the surgeon next week?

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

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Elizabeth123's picture
Replies 16
Last reply 11/7/2018 - 2:44pm

It is with great sadness I post this.   Ezio last Monday lost the battle with melanoma.   We had tried targeted therapy with dabrafnib and tremetinib. Switched to pembro. And then in combo added in ipi.   We just ran out of time.  After 3 gamma knife , whole brain radiation and additional SRS.  We still lost.    The lungs and adrenal glands all shrank.  But the brain kept progressing.  Things went out if control the last month. And things changed overnight.  He lost the battle last Monday. He will be Forever missed.  

Elizabeth   

 

 

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MelanomaMike's picture
Replies 5
Last reply 11/3/2018 - 12:25pm

Hi yall, quick question, some may remember Elizabeth123 on behalf of her husband Ezio? (Or if your reading Elizabeth please post!!) I researched her last post about him and it was early October and nothing since. I was following the ol guy (not doing so hot) & the time distance without an update worries me...im gunna send a direct message now & if i get response ill post back here..

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mortalMike's picture
Replies 18
Last reply 11/4/2018 - 12:27pm

Sorry about the anonymous first posting, I'm new. I just found out that I have "malignant melanoma". I am scheduled for a consultation tomorrow to get ready for a upcoming test/surgery next week. Getting a Sentinal lymph node test and Wide local excision. I'm 69 and I admit I'm nervous. I have been shot at,blown up and stabbed but that was when I thought I was immortal. I could sure use some advice now.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/4/2018 - 12:10pm

I just found out that I have "maligant melanoma". Am scheduled to see Doctor for consultation tomorrow for upcoming test/surgery next week. Getting Sentinal lymph node test and Wide local excision. Im 69 and I admit I am a little scared. I have taken being shot at, blown up and stabbed but that was when I thought I was immortal. I could sure us some advice now

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VinceMart's picture
Replies 24
Last reply 11/6/2018 - 3:30pm

Well I am not going to be a candidate for the TIL trial at NIH.  During my visit, I was informed that my brain MRI showed a BB size tumor on the right cerebellum, last scan was in June and this was not there. That puts me out of the trial and looking for answers and next steps.  Cerebellum tumor doesn't sound good, ipi/nivo was the back up plan if I didn't get into this trial.   However, I failed Taf/Mek, Keytruda, and Braftov/Mektovi so I don't know if this will work either.  This sucks!  Trying to switch to a Melanoma specialist closer to home now.  Any advise is appreciated knowledgable Melanoma friends.  

Thanks in advance!

Vince

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KellyH's picture
Replies 12
Last reply 11/4/2018 - 12:35pm

Hi everyone. 

My son is 6 months into to his adjuvant Nivo therapy for his Stage 3a melanoma......his only scan so far was a PETscan in March following his initial diagnosis and prior to any of his surgeries.  He had his sentinel node biopsy and WLE  at the end of March, positive for microscopic melanoma, and a partial neck dissection at the end of April, and all those  lymph nodes were negative.  He began his Nivo treatment at the end of May when he was finally staged. 

We are scheduled for his 6 month mark CT scans of his head, neck, and chest on Nov12....I received a letter from the insurance company stating that his neck and chest CT were approved...however I did not get a letter about his head CT  being approved...the nurse at the doctors office returned my call today because of course I was all over that, and she said the insurance company denied the head CT. She said she forwarded more info and is hoping to hear back from the insurance company in the next couple days. 

So my question is I guess ....how often and what kind of scans do Stage 3 patients usually get????  I think I may be in for ongoing battles with Blue Cross and Blue Shield for years to come and I just wondered if this is something other people go through...up until now I have had little to complain about...everything was covered with minimal copays...but I’m sorry....with the reputation melanoma has for sneaking back in after surgery you would think frequent routine scans are justified....I’m furious...I know my doctors office is doing everything they need to do to get it approved by Nov 12. But I still do not understand the denial in the first place!!! 

So frustrated and not looking forward to calling BCBS tomorrow....

Kelly :/

 

A Melanoma mom ❤️

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Coragirl's picture
Replies 21
Last reply 11/4/2018 - 12:15pm

Hi all, we got some good news today. My husband's tumor is shrinking, really shrinking! The radiation and immunotherapy seen to be kicking in. He also has nothing  new. Hopefully things will continue to go in this positive direction. Thinking of you all.

Amie Taylor

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kcmtnbiker's picture
Replies 11
Last reply 11/3/2018 - 8:41am

I had a scan yesterday. After round 2 of 11 months on Opdiov my scan yesterday showed NED! I am switching to monthly Opdivo treatment for the foreseeable future. But, the Opdivo is doing it's job. Round one was 32 treatments. After about 8 months off, I started round 2 with 24 treatments thus far. So far my body is tolerating the Opdivo very well. 

kcmtnbiker

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AndrewB84's picture
Replies 9
Last reply 11/4/2018 - 12:41pm

Hello!

My name is Andrew. I have stage 4 melanoma. I have a tumor right next to my inguinal lymph node that was about 4cm x 4cm, I had another growth in my mesenteri c node in my mid abdomen, and a couple of other small spots. My doctor placed me on a treatment of both Nivolumab and Ipilimumab. I have received two rounds of both drugs. After the second round I noticed a dramatic decrease in the size of my tumor on my leg. When I went to get my third round of treatment my doctor noticed that my aspartate aminotransferase numbers were high. They put me on prednisone to get them back in line. My doctor wanted to taper me off the steroids, but my liver isn’t having that. The numbers went back up as soon as I tried to lower the dose. My doctor wants me to stop taking Nivolumab, since it’s what did this to my liver. I’m still going to be taking Ipilimumab.  I’m about a month late for my third round, has this sort of thing happened to anyone else? I’m wondering if this is a bump in the road, or something that just happens to other people taking both drugs. 

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MelanomaMike's picture
Replies 9
Last reply 11/1/2018 - 6:03pm

Hi ya'all, well, i hope my post " Will" post this time, i tried earlier but reCAPTCHA wouldnt let me, huh, i thought it was ONLY my computer that MRF has a hard time recognising me as NOT a robot or a Spam threat, now its my phone, just great...
I digress, im good other then the Nerve pain that has come back since starting back up on Nivo, being almost 40 days without it, my bodys Nerve pain was subsiding quickly to really nothing! These pains are severe when i wake, not so much through the day. Double up on the Naproxine time!! Stronger cups of Joe & im good!..im anticipating Novembers "surgery", (Right Lung) it gives me the creeps thinkin about it but its gotta be done!..
Ok folks, just puttin out a wire to let you know im alive! Well, atleast thats what iv heard...

Im Melanoma and my host is Mike..

www.covvha.net

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MelanomaMike's picture
Replies 1
Last reply 10/30/2018 - 12:36pm
Replies by: Raco

Im conducting a Posting check to see if i can post now, i couldn't earlier..

Im Melanoma and my host is Mike..

www.covvha.net

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STL Mike's picture
Replies 2
Last reply 10/30/2018 - 12:43pm
Replies by: Raco, WithinMySkin

Had another scan last Wed ( 24th ).   All labs and scan were good.  So far so good have been NED since Dec 2017.  Slight hiccup with scan, Report said stable 3mm nodule in right lower lobe of lung.  Was news to me since nothing was said about it in last scan in July. 

Had Doc pull and compare images and sure enough it was there in July.  No change.  Doc was unable to get prior images pulled up to see when it first appeared.  Evidentially the radiologist who interpreted the scan in July didn't think it was significant enough to mention!!

The opinion is that since it hasn't changed at all since July it's not a concern right now.  Going to make a special note to look at it again on next scan Jan 23rd. If it's changed, Doc says we're going to do a PET.

Another event...FINALLY almost off the damn prednisone!!! Been on that crap ( dosages up and down ) since Dec 2017 looks like the skin issues are going to stay away. Last dose is 2.5mg tomorrow.

Lastly, was out at the motorcycle dealer getting a patch sewn on my vest.  Had to leave quickly.  They had a 2007 Harley Heritage Softail that the sales man almost got me to trade in my 2004 Yamaha V-Star Classic and buy.  Nothing wrong with my bike.  But that was one damn good looking Harley.  Case of want vs need.

That can also be read as GF would do severe bodily harm to me if I came home on a different bike needing to make payments on it.

 

Hang in there evryone.  We may not have a cure but we can fight it to a stand still til one in found

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