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.

Scan results after 4 rounds of ipi/nivo

Hi all, 

I had my first CT scan after finishing four rounds of ipi/nivo so I thought I did share my results  No detectable signs of melanoma!  I could not be more thrilled  The small met near my original groin lymph node site was gone (This is the location that appeared when the Taf/Mek began to fail) and the possible 3mm met (unclear because of lung scaring from loads of pulmonary embolisms last year) was gone too  

 

One Week Out

Me: Stage iv, large lymph node tumor, a few small ones, LDH normal. Diagnosed 5/22.

I’m a week out from my first infusion of Yervoy +Opdivo. I’m feeling overwhelmed, among many other things. I slept most of the day after my treatment, was little less fatigued the next day, but had neck pain and fever Mon-Weds, which has lessened tonight.

I read this board and participate in another online support group, and have learned a lot and gotten much-needed support from the only people who can understand what I’m going through. But...

Sharing some good news

Hi, warriors, wanted to share some good news with you. This morning mum had first CT scan after staring Taf/ Mek in a trial for Stage 3 C unresectable in the end of March and we just got the results - the oncologist told us that the results are great and the pelvic nodes decreased in size! I am so happy, this is the best news we got since November 2017. On our way to NED! Honestly I expected the nodes to disspear knowing that target therapy acts fast, but we will take one step at a time and pray that the drugs are our miracle.

how i was cured from cancer using Cannabis oil

i was battling with prostate cancer for 2 years. Until my consultant
Dr Ahmed Mustafa from Dubai told me about a cure of another patient who got treated by one of his
colleagues in Dubai using cannabis oil. According to Dr Ahmed's story, the treatment lasted for 3 and halve months. So,
he said i too can be treated by this same method. So, he contacted his colleague and he came down to discuss how this can be done.
I was placed on four months treatment. This happened early 2017 and now i can confidently say i am free from any cancerous cells.

Mycosis Fungoides/Sezary Syndrome

My husband has had this horrible (whole body rash) since just before X-Mas.  He has seen 3 different Dr's in Tucson, AZ.  He has now seen another dermatologist (PA) in Sierra Vista, AZ.  Now his Primary has referred him to yet another dermatologist in SV, AZ.  It takes a month to month and a half to get in and see each new Dr.  This rash is driving him crazy.  He is weak, has no energy, has lost his appetite and lost c. 30 pounds since the beginning of the year.  We spent c.

Future biopsies? Switching docs?

Hello! I’m thankful for the info I’ve gained from this board in the last six months. I had a melanoma stage 1a diagnosed at the end of last year. My thoughts are that it “flared” during pregnancy. I was sick with worry over it but am thankful it was only 1a. At the time of biopsy (shave) my doctor didn’t palpate my nodes and he didn’t at the WLE either which was performed by him in his office. Once he palpated them at my “first” skin check follow up I left his office and read about the role of lymph nodes.

Stage 4 with good news

Hi Friends,
I always like reading good news here. It gives me hope. Maybe my report will help someone, also. I recently advanced from stage 3 to 4 and had a thoracotomy 8 weeks ago to remove 2 lymph nodes in my chest that were adhered to an artery. After a few rough weeks, I am healed and my pain is gone. The best news is this week's CT showed no active disease. Now to step off this rollercoaster for the next 3 months. Feels weird to have stage 4 cancer but have nothing detectable. I'm sooo thankful!

Allergic to ipi

I saw my oncologist and she is almost positive that I'm allergic to Yervoy. I've had 2 treatments and 4 days after the second one my lips, tongue, and face swelled. After a trip to the ER, I've been on benedryl around the clock. I'm still having swelling episodes 2 weeks later. Opdivo only from here on out. Hopefully what I've had will shrink my lymph nodes.

On a positive note.......

My mouth is in much better shape after using coconut oil suggested by Gene_S. Thank you!

@ MDA - Decision Time!

Labs, Full CT & Brain MRI on the menu for today. Meet w/ the Team, tomorrow to discuss known (kidney tumor) & unknown. Hoping nothing else turns up, though I've had a 1" hard lump behind my left nipple, since the beginning of May & am still recovering from prostate surgery, early April. That recovery has been surprisingly difficult, even though I'm now 9 weeks out. I'm pretty sure I've developed another UTI (ugh!) but the doctors here were kind enough to order a urinalysis & save me from waitning another 2 weeks, before my appointment w/ the urologist back home.

Coming Off Treatment

Hey all,

Good news up here - my sister Leisa is scheduled to conclude 2 years of immunotherapy with last infusion on June 22. She's a bit nervous about it but I'm so happy for her!!

She's right on the "sweet spot" as far as timing is concerned too (from my understanding of it), two years of immuno in total and NED for the last year. 

So, a couple of things in case the info is of use to anyone:

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