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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Anonymous's picture
Anonymous
Replies 10
Last reply 6/21/2019 - 11:06am

I am starting Opdivo tomorrow and wanted to see if you have advice for me. Is there anything I should do to prepare?

I have been researching and it looks like it’s hard to know how each person responds. I would love to hear your thoughts.

Thank you!

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Melody55's picture
Replies 6
Last reply 6/18/2019 - 5:24pm

I’m new to the forum. Diagnosed in Dec 2018. Had surgery in Jan 2019. Started Opdivo in March. My melanoma was at the base of my fourth toe. My surgery resulted in the amputation if 3 toes. Currently my scans are good. I’m scheduled for -2 treatments -1 every 4 weeks. I’ve had some side effects but have managed. I’m just so glad to find this forum. It’s hard to find someone to talk to

Melody 

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MelMel's picture
Replies 1
Last reply 6/17/2019 - 11:56am
Replies by: melanomamafia

Danish study links hydrochlorothiazide, a diuretic to increased risk for lentigo and nodular melanoma.

https://www.medpagetoday.com/hematologyoncology/skincancer/73157

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Maureen038's picture
Replies 9
Last reply 6/25/2019 - 2:44pm

My husband, Bill had scans yesterday and they were excellent!! It’s been such a long journey with 3 clinical trials, 3 VATS surgeries, 1 liver surgery, DTIC and now being on the second Her2 drug regimen after he had lung nodules on the first drug. Thanks so much to Sloan-Kettering for finding out he has an over expression of the Her2 mutation. He has some neuropathy in his fingers and feet and he has restless leg syndrome, but he is doing so well!!
Thanks to the many wonderful people on this board for helping me with awesome advice and support especially Celeste, Brian P and Ed!! I hope you are feeling better Celeste!
Love to all!
Maureen

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RichInLife2's picture
Replies 2
Last reply 6/14/2019 - 1:55pm
Replies by: Bubbles, RichInLife2

Turns out that fecal transplants to improve gut biome by transferring beneficial gut flora can also transfer harmful bugs too. Researchers will have to move more cautiously in the future, screen donors and their samples. I think that this also means that any hope of fast-track trials in the near future are probably dashed.

https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-pote...

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guynamedbilly's picture
Replies 5
Last reply 6/17/2019 - 12:06pm

I've reached the first fork in the road that I am having trouble deciding on. I have possibly six lesions in my lungs and possibly two in my liver, along with others that have recurred in my skin.

My primary Oncologist has recommended stopping immunotherapy currently and not undergoing radiation for tumors in my lungs and instead signing up for a trial for MGD009. I think one of the reasons they recommend this route is because it's an easier treatment path than radiation and all, and it's a promising drug also. There's only a possibility that I could get on this trial anytime soon. I don't know the odds, but it's not guaranteed.

The 2nd opinion is to continue immunotherapy and add radiation to the two largest, riskiest lesions in my lungs. Also, start another round of IPI/Nivo. IPI/Nivo did cause the lesions in my liver and one that was near my kidney (that we are unsure of atm) to shrink, but the ones in my lungs still grew. I have not had radiation treatment internally yet. Best hope is an abscopal effect response will trigger an immune response in the other lesions. This is all while waiting on my TIL therapy cells to hopefully mature properly. The big wrinkle to me is I showed three potential trials from my primary Onc to the 2nd opinion and the one they picked out and liked best was the MGD009 trial.

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Kelley888's picture
Replies 6
Last reply 6/17/2019 - 1:12pm
Replies by: Kelley888, Melody55, MelMel

Hi. I have consulted this forum often in the last three months, but this is my first time posting. I was misdiagnosed in Dec. 2018 with an ovarian adnexal mass (grapefruit) that turned out to be recurrent melanoma (15 years after a 1a tumour was removed with negative SNB). A small met had also developed under my breast that three doctors had dismissed as nothing. On the day of the surgery by a Gyno-oncologist, I pointed out the breast lesion, which had grown considerably. I think he may have realized at that point that he was not dealing with a gynaecological issue, but he operated anyway. The preliminary pathology for both the mass and the lesion was positive for melanoma.
It was a nasty recovery and, between the surgery and the first dose of Keytruda, the blobs spread like wildfire. About 30 subcutaneous lesions developed in the week before and after my first treatment as well as lung/adrenal/liver/pancreas mets.
I had hyperthyroid issues, now finally under control, as well as insane fatigue and pain in my lesions and everywhere else. Lots of bizarre side effects that came and went. Most of the visible lesions have disappeared. Not sure about visceral mets, the CT will be done down the road. I just did my 4th dose three days ago. I had been feeling almost normal. By yesterday, I had abdominal pain and nausea that was absolutely insane. Today the nausea is gone but my gut still hurts a lot. Not as much as yesterday, but I have trouble walking. Have any of you experienced anything like this?

Kelley

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MarkR's picture
Replies 8
Last reply 6/26/2019 - 5:10pm

Went to see the Dr today to get the MRI & CT results from earlier this week after 3 months on Nivo Mono following progression earlier this year. Some good, but not great results, in that the Lung nodules are ‘stable’.

He did say there was a very small amount of growth in some but believes that may be some enlargement due to treatment. When I was on Ipi / Nivo my 3 months scans actually showed progression to my lungs (although it wasn’t identified as that at the time) and then I had a partial response at the next 3 month scan. I’m hoping the pattern repeats itself this time.

As I haven’t had any side effects as yet - its on with another 3 months of Nivo mono and see what happens in 6 months

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MelanomaMike's picture
Replies 5
Last reply 6/17/2019 - 9:24am

Quick question guys, i began the search for ClinicalTrials here on MRF under the EMERGINGMed.com section, it asked for my profile, mek, mek2, braff, cd1 hundreds damn near of these abbreviations what exactly is this? And how come i wasnt told what my melanoma profile is? Is it a test to find out what DNA structure i have? What is the official term that this is called ??? Please help!!!!!! Thanks guys

Im Melanoma and my host is Mike..

www.covvha.net

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Scooby123's picture
Replies 1
Last reply 6/13/2019 - 3:54pm
Replies by: Scooby123

Hi all , anyone having issues with posting , I write a post to put on but error always comes up.
Scooby

Lynda

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MelanomaMike's picture
Replies 7
Last reply 6/14/2019 - 7:49pm

Hi family, well, as my last CT scan lit up, my small intestine lit up brightly in the Jejunum area, explains my new bowel habits, watery at times and yes, you guessed it, blood. Sorry for the Graphicness of it haha...ok, so that we already knew, but now theres a Light Up in my right butt cheek! Ha! It must be deep cuz i cant feel it like half the tumors that grow on me, either the scans catch em, or i catch em!
So, that explains the mild pain iv been havin lately when i roll over at night in the fetal position! It felt just like a Bed Spring! Atleast thats what i thought, but in hine sight, we have a fabulous topper by "My Pillow" and it is thick,! Theres NO Springs gettin through to any body parts with this Topper! (Their pillows are great to! Im a paid spokesperson YA RIGHTT!)) I wish...
And, of course the tumor on my left side (Stomach) is gettin yanked out in July, that one were aware of already. Thank God thats it! This Mel Monster thinks it can go anywhere it wants! And sadly it can..well, except maybe our " Hair" haha....
Well family, thats my current standing, dont think Opdivo is gunna help anylonger, IL2? Interleukin type stuff? Thats what my Oncologist and top Mel Doctors are saying other then surgerys, shes in with docs at 2 other Kaiser locations, they also have spoke of Trials....
Talk 2 ya soon guys, Mike

Im Melanoma and my host is Mike..

www.covvha.net

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Julie in SoCal's picture
Replies 11
Last reply 6/15/2019 - 6:40pm

Larry!

Ok joking aside. I went to see the Rock Star Doc yesterday afternoon and the news is that I have lung cancer, not melanoma, in my rib (yes, that's why it hurts), and neck lymph modes. The abnormal PET uptake in my right shoulder is from a torn rotator cuff. Seems perverse to be happy about a torn rotator cuff, but I am.

So the plan is to have Mel surgery probably next Monday to remove 2 small pieces of mel funk on my left arm. Then probably take Vizimpro, a targeted TKI chemotherapy for the lung cancer. Vizimpro is a new "third generation" TKI that targets a gene mutation that is in my lung cancer. It's relatively new (2018) but the outcome data is a tad better than the other TKIs. And I am a mutant, but then you knew that.

In talking with the Rock Star and his band, they say that it's better that it is lung cancer as I have already burned through a lot of Mel treatments and coming up with something that will work may be a little creative. I suppose this is good. I am only on my second line of LC treatment., but I have moved from stage 3 to stage 4. And from treat with curative intent to palliative intent. And the TKI chemo drug is a long haul ("continue until progression or untolerable side effect). I'm not sure I'm ready to "have the flu" for the foreseeable future.Ok I"m starting to whine now,...

Still trying to wrap my head around all of this..

Thank you, friends!
Shalom!
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Gene_S's picture
Replies 1
Last reply 6/13/2019 - 8:36am
Replies by: Anonymous

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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