MPIP: Melanoma Patients Information Page

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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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Tsvetochka's picture
Replies 5
Last reply 8/30/2019 - 12:55am

I have Stage IV melanoma, but it's not on my skin. It's all internal tumours. After four times with Keytruda I had a scan to see how it's working. Everything has decreased by about 50%. To me that sounds great! Is it about normal? Better than usual? Or not? Can I expect continued progress like that? (My usual doctor was out of town, so I have to wait 3 weeks to ask her questions like this.)

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MelanomaMike's picture
Replies 13
Last reply 8/31/2019 - 1:59pm

Hi Family!! I have GREAT NEWS! Im In like Flynn with Dr. Hamid, Sept. 10th!!, i spoke with his coordinator Jasmine, ha, the one who originally failed to call me back, i put all that drama behind me & was nice! haha, maybe she was busy busy!!....
You all are Amazing, and like i said in my recent update that i wrote on the GFM page, im seeing through the money, the love and compassion is what i feel & thats a Therapy in itself that Dr. Jang, Dr. Hamid, Dr Seuss cant give!...Im really, really lookin forward to see if Hamid can come up with a different battle plan, that "ancient" stuff Jang offered seems Ruthless! But! On the other hand, if Hamid comes up with similar meds or the same then "kudos" to Jang, but untill then no! I refuse what i believe to be Ancient remedys! Haha...thank you all again, i feel so at ease knowing Dr. Hamid is around the corner & may be my new treating Oncologist! Love ya'll!

https://www.gofundme.com/f/mike039s-melanoma-fight?utm_source=customer&u...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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gmschmidt's picture
Replies 4
Last reply 8/29/2019 - 9:38am
Replies by: Bubbles, tedtell1, lkb, Hukill

Hi Everyone,

My husband is off treatment (for now), after two years of nivolumab. It's been three months and most the side effects have subsided, which is great. However, the extreme dry mouth and slimmy film in his mouth continues, and hasn't changed one bit. I'm just wondering if there is anyone else on this forum who dealt with dry mouth and is not longer getting treatment, that could tell me if the dry mouth ever went away.

Thank you
Gail

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Replies by: MelMel, DoubleTT

Loooookking for NRAS patients and their experiences please! and thanks

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MelanomaMike's picture
Replies 6
Last reply 8/28/2019 - 4:16pm

Hi Family!!!!!! Im back home in good ol' Van Nuys Calif.!..it was good, REALLY good seeing my 2 brothers Tim & Dan, and my nephew Tony, And of course the rest of my extended family, i really needed it plus to gain a clear prospective of my near future! I thought a lot about my past visit with that Dr. Jang cat, not once did he give me the impression that "We Got This!" Ya know??, that i shouldnt worry, hes got some stuff up his sleeve to kick some Melanona ass! Remember guys, i came in to see him after my Plea
for him to Refer me to Dr. Hamid so, that alone should have brought out the "Best" of Jang and as a decent human being that he Should be, and me being a late stage Mel Cancer patient near the edge, why didnt he quote "Sell" himself to me? He really didnt! It hit me in Texas! Texas allowed me to Reflect back to our 10 min visit! Am i wrong? Freakin sell yourself to me! Tell me you have the same tools and meds as Hamid does! He did not choose to, he knew prior i was lookin for a referral to Hamid.....anyways!
So! Heres where were at, my wife Hillary chose the Weekly dispersment of funds wich is Sept 3rd according to GFMe so, ill make an appt. with Hamid tomorrow, i was gunna wait and make appointment when the funds are ready (Sept 3rd) incase of problems with the transfer of the money to my card and id miss my consult! But then i decided no, make it now, God will make sure it all goes Smooooothly! All you folks have changed my life EVEN MORE then this group already has, even if you couldnt donate, so FREAKIN what! Alot of us are doing bad and i get that, duh! Thats why im doing this GFM! Im behind you no matter what you do or not for me!!...all of you thank you!... gotta go! Time to browse other MRF posts! Lovevya guys....
https://www.gofundme.com/f/mike039s-melanoma-fight?utm_source=customer&u...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Moquet's picture
Replies 17
Last reply 9/3/2019 - 9:54pm

Hello everyone,

I had a 2,05 mm melanoma with SLN-negative in the neck when I was 30 (in 2014). This summer, my doctors detected a recurrence close to the parotid gland. I had a parotidectomy and a CLND, showing that 2 of my nodes were metastatic. Now, I am NED, but my doctors want to try an adjuvant therapy. As we are just starting to give adjuvant treatments in France, they are hestitating between immunotherapy (pembrolizumab) or targeted therapy (dabrafenib and trametinib). Could you tell me what are the actual treatments in your countries at stage 3 ? What would you decide if you had the choice between these two treatments ?

Thank you very much for your help

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searching2's picture
Replies 3
Last reply 8/27/2019 - 8:31pm
Replies by: Bubbles, searching2, Anonymous

As the wife and caregiver for my husband's stage 4 melanoma I feel obligated to ALL of you to post this information about T-Vec or (Imlygic) which should NOT be used on large tumors!!! I see that my posting back in 2017 has been removed, also removed from any "Google Search," probably by Amgen Pharmaceuticals or FCS as it might affect their sales/profits. After retiring to SW Florida at age 62 we were referred to Florida Cancer Specialists for my husband's cancer treatments. Melanoma was first diagnosed in MN 2010 behind a mole on his right calf, surgery was done immediately and the cancer quickly spread to his lymph nodes in the right groin. Surgery was done again at Methodist Hospital and the cancer removed from the groin area. A new tumor started to grow at the surgery site next to the main artery. When we left MN for retirement to SW Florida the new tumor was the size of a walnut. The doctor at Florida Cancer Specialists tried a whole group of different immunotherapies, each time we would visit her she measured the tumor until a year later it had grown to emass his whole thigh...Huge! Why were we not referred to Moffitt at this point????

I was panicked and searched the web every evening to find the latest information on new drugs available to shrink the tumor. In 2017 I found a new medication, T-Vec - IMLYGIC (talimogene laherparepvec) that was supposed to help. Three doctors, two from FCS and one from Mayo Clinic Rochester MN, approved of the Imlygic vaccinations (7 sessions of 4 vac) to be given directly into the massive tumor. My husband wanted to document how the tumor would shrink and had me take photos of the procedures. Within a few months the tumor exploded and tore through the skin at the site of his previous surgery and formed a Huge Black mushroom of necrotic tissue at the right groin!!!!

His doctor at FCS didn't seem concerned. I took him to 4 surgeons in the area who refused to de-bride the narcotic tissue as they said, "he could bleed to death" if they came near the main artery in the leg. We got on the next flight to MN and drove to Rochester Mayo to see if they could do anything for him. After two oncology surgeons saw him they wanted the Ortheopedic surgeon to view the tumor. The Ortheopedic surgeon came in and said, "the leg needs to come off up to the hip" I was horrified that this was happening to him! Wanting a second opinion, I brought him back to SW Florida and was going to bring him to Moffitt Cancer Center (EXCELLENT) He ended up in local hospitals with Sepsis 4 times, then had a stroke before I was able to get him to Moffitt where he had his right leg removed to the hip. Moffitt literally saved his life!

After the leg was removed I looked at the Amgen Pharmeceudical website and found information on giving T-Vec treatment, it states: NOT to be used if the patient has had previous surgery at the injection site!!!

Why, when 3 doctors had this information in their files about his previous surgeries did they miss this?????

I have nothing but praise for Moffitt Cancer Center and the wonderful doctors and staff there, nothing less than excellent!!!

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Happygal's picture
Replies 10
Last reply 8/31/2019 - 1:01am

Ok, so now I wait, to meet with the oncologist, weds. Wait to see what new symptoms come, no more meds, no more radiation, just Decadron to keep the brain swelling at bay. Oh and the last thing showing. I can hardly hear. My eustachian tubes got shut down with the whole brain radiation. There's fluids behind them and I need to take flonase for about 6 months to see if it will clear it.

I am scared beyond belief. I don't know what to do, say, or think , am I just waiting for the end?
Every time I get a test or diagnosis, it isn't good.
I am so confused with my life

Tyais

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Hanaln's picture
Replies 7
Last reply 9/9/2019 - 7:08pm

My husband is having his first PET scan today since starting Keytruda for stage IV melanoma in May. I’m an anxious person to begin with but it is really hitting me today. How can I be strong for him and take care of myself at the same time? We have a 1 year old daughter and he is only 33 years old. Welcoming all positive stories and encouragement. Holly

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fedupnurse67's picture
Replies 7
Last reply 8/31/2019 - 12:11am

So definitely a recurrence of my melanoma. Not a candidate for resection. Location in the left iliac chain and the left periaortic region. BRAF positive. Looks like my treatment will be ipilimumab with nivolumab. Not sure when treatment will start. Having a PET scan next week, seeing the oncologist in 3 weeks. So let the fun begin again!

Questions will be now side effects? Can I work? I couldn't while on the interferon.

Donna

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Anonymous's picture
Replies 12
Last reply 9/7/2019 - 5:12pm

I had a suspicious lesion removed at the end of July (shave biopsy).

The initial pathology report came back as invasive melanoma Breslow Depth at least 0.8 without ulceration (Stage 1(b)). I was preparing for a WLE and SLNB at the end of this week with a team of melanoma specialists. These melanoma specialists have their own dermapathologists review all slides before surgery to confirm the diagnosis.

To my surprise, the second opinion from these dermapathologists came back Melanoma in Situ-- NOT invasive melanoma.

I'm at THRILLED that this could actually be melanoma in situ but also pretty flummoxed as to how one pathologist can see invasive melanoma at 0.8 and another melanoma in situ.

Does anyone have experience with the "downgrading" of a diagnosis to this degree? Do I need a third opinion on the biopsy slides?

Thank you in advance for your thoughts.

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KateD's picture
Replies 1
Last reply 8/26/2019 - 8:15am
Replies by: MLD1973

Hello, I am returning to MPIP after a long time to help deal with some scanxiety, after experiencing some new neurological symptoms. Everything has changed on the website since my last visit! It took me an age to find my profile to update it. Is it still possible to search users' profiles, e.g. search by melanoma stage? I can't seem to find how to do this - can anyone talk me through it? Thanks!

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MelanomaMike's picture
Replies 14
Last reply 8/30/2019 - 11:50pm

Hi Family, below is my GoFundMe link so i can pay to see Dr.Hamid a Melanoma specialist as
Alot of you already know or have heard of him in Melanoma medical field, as much as i was apposed to doing it, my wife put it together...i know Hamids initial consult is $700 after that i have no idea, havnt seen him yet but, i do know i can change my insurance around back to straight Medi-Cal wich he takes! (Calif State ran Ins.) To get it switched from Kaiser to straight Medi-Cal can take up to 90 days "or less" im hoping!! I figure what ever money is left and unused i can donate here....thank you all for supporting me, i finally dropped my pride and now i know i need help....i love you guys.....https://www.gofundme.com/f/mike039s-melanoma-fight?utm_source=customer&u...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Thisisnottheend's picture
Replies 3
Last reply 8/27/2019 - 1:31pm
Replies by: Coragirl, lkb, ed williams

Hi there!

Has anyone else experienced a slight cough while on opdivo? Mine started a few months ago....it’s not bad it’s like maybe a coughing fit 2-3 times a day max. But as you melanoma people know, your mind can go to the worst place and assume progression. I’m stage 3c if that makes a difference. Due for a CT scan in the next few weeks, so I’ll know for sure soon, but my anxiety is getting the best of me. :/

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MelanomaMike's picture
Replies 15
Last reply 8/27/2019 - 7:41pm

Hay Family! Just a quick check in, im here in Laredo Texas visiting my brothers, boy, Laredo SUCKS ASS!! Sorry for the foul mouth, its my ONLY opinion! And "Downtown" Laredo? Freakin Dirtbag capital of Texas if not America, when i see dogs, stray or not (who knows) walking around the streets, thats a dirtbag town in my book...i tell ya, if ever lived here, my job would be a Rescue for those dogs, even cats (didnt see cats) i actually love Cats the best, dogs second...but nevertheless id be busy as hell tell you that! Where im at now (my hotel) is nice, better part of town. Its been good seeing my bros Tim & Dan though!! I really needed this and i told them that..
Hope ya'all are good, im starting to debate that Dartmouth treatment, VERY low response rate with NO significant Overall Survival rate, Zero really in the study..i dont know folks...i DO know i love you guys....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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