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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Charles died at home on February 1st, If I hadn't wanted to give him more time to snooze before readying for his last, one of 10, full brain radiation treatments. The next day was to be advancement to Keytruda, or even perhaps a new clinical drug.  In lucid moments, I am sure he understood that discussions of health aide workers and in home hospice was fast approaching the horizong..............I believe he reached through a window and climbed away, to be at peace, pain free - never to have his worst nightmare of dying in a hospital reallized.  It's been 38 days, and it's still so hard to breathe..................I will work to fight against this disease, but with a heart so bruised and hurting, making my way through a world that is empty for now, filled with lonliness and yearnings for one last hug.............

Please all fight on, kick butt, or at the end cling with love.............for those left behind now suffer in a different way,

I will still visit the site, this forum helped me so much, it sustained me and educated me.  For all those that went before him, hold each other tighht and shine down on us to let us know your spirit still surrounds us.

Please all take care, I love you all like family.

Rita

Rita

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dmalone's picture
Replies 5
Last reply 3/18/2017 - 2:23pm
Replies by: dmalone, Anonymous, jennunicorn, stevenallenschwartz

I am scheduled for surgery to further excise my newly diagnosed 1A melanoma on the back of my thigh in the morning. The surgeon was very brief and gave little information regarding my recovery other than I will have stitches for 3 weeks and shouldn't do squats. He told me I could continue running and walking.

I've done a little research and am finding rest after surgery is important and to expect pain.  Has anyone had an excision on their thigh that could share recovery expectations? Did you need more than local anesthesia for your procedure? Were you prescibed post-op antibiotics? What activity were you prescibed after surgery?

Honestly, I was planning on going in for the procedure on my own tomorrow and going back to most of my normal activities, and could use some realistic expectations. 

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mom3girlsFL's picture
Replies 2
Last reply 3/13/2017 - 9:22am
Replies by: marta010, UBContributor

Hi Friends!

Longtime member, frequent lurker...sadly, not much of a poster.

 

I have been on this forum since (roughly) 2003. There have been many people here who I've been blessed to journey with and many more who I've been able to learn from. There have been times when I've  "stepped away", sometimes because it can be so overwhelming, and sometimes because of battles being lost by the most courageous warriors. I am so grateful to you all who continue to regularly post and update and share information.

With so many current stories of people battling-people who you cant help but love,  I thought maybe my past year (year and a half) could offer optimism and hope.

2003 stage 1.  2010 groin dissection, start interferon...later 2010 fail interferon, inguinal node surgery. Clear scans, watch and wait. 2015 stage 4 lung, retroperinoteal lymph nodes, para-aortic lymph nodes.

Started Taf/Mek combo-cant remember if we were into 2016 by this time.  Immediate responder! It hasn't  been easy, have changed dosing, switched to zelboraf/cotellic (was bad!), took only taf for a while, have had a couple med "vacations"...currently full dose.

So far 3 scans (last one December) have shown no recurrence. I continue to try and stay cautiously optimistic about the future knowing, statisically, things can change.

Dont know if anyone else here has been on T/M this long as well?

Anyway, much love to all!

Laurie

 

Do not fear tomorrow, God is already there.

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Julie in SoCal's picture
Replies 10
Last reply 3/11/2017 - 7:52pm

Greetings Melahomies!

Start the happy dance music!  My very small lung met came back stable.  It hasn't grown or changed!  Woohoo! Also my brain is normal, which is always a relief to know! Sometimes my friends wonder...

So, the plan is to remove the very small lung met and find out what it is.  It hasn't been biopsied so it could be primary lung cancer or mel or some other kind of funk. I'll talk with the Rock Star on Monday about the timing of this, but we're in no great hurry!

I also have immune related inflammatory arthritis in my knees, back and shoulders and thumbs. This has been very painful and debilitating (my knees and shoulders don't bend like they should). So, with mel being stable and not clamoring for attention, I'll see a rheumatologist and we'll move on to addressing my joint issues.  Yea!

So, this is where it's at with me. 

Thanks for all of your encouragement and wisdom!

Shalom!

Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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Renee87's picture
Replies 6
Last reply 3/13/2017 - 9:01am
Replies by: BillMFl, Renee87, Anonymous, kimmyl

Hi, I hope there is someone out there with similar experience to me as so far only a hand full of cases have been recorded so I am feeling a little isolated in finding information particularly to me case. My pure coincidence for another surgery during key hole my surgeon found an internal melanoma within my belly button. At first he thought it was a little bit of dirt and scrubbed it until he popped my belly button inside out to find the growth. Thankfully it's stage 1. I have surgery next week to remove belly button and area surrounding. Has anyone had experience with an internal melanoma? 

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AVeryHopelessPerson's picture
Replies 4
Last reply 3/15/2017 - 2:01pm

Hello everyone. I have been trying to avoid this community ever since my boyfriend has been diagnosed with Melanoma (three weeks ago) He discovered a mole on his back shoulder and after a lot of begging and shouting from me to get him to a hospital, he finally agreed. And then he got diagnosed with stage 3 C Melanoma. He got the surgery to remove it and some lymph nodes but there are still traces left in his lymph nodes. He's currently getting chemotherapy and so far it didn't spread. The doctors say he has a 35% chance. I couldn't stop crying. My aunt survived stage Three breast cancer and she told me to not think of him as a percentage. (Her doctor told her she is a person, not a percentage.) I think it took her five years to finally be cancer free. I'm not sure what else to say but I don't want to lose my boyfriend at all. All I keep thinking is "he's going to die." Te doctors are already asking him to write a will. Do you think he has a chance to survive this?

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/14/2017 - 8:30pm
Replies by: Anonymous, Bubbles, Casitas1, Charlie S

I'm a Stage IV, long term (NED) survivor who is contemplating leaving the workforce.  I'm over 55 and under 60 and tired of my extremely stressful but lucrative job.  The day to day grind and stress is not and has not been healthy both during the battle and even now at NED.  Corporate cuts, continuously looming layoffs and not being a millenial is starting to really get to me...I know that I am very fortunate to have the job, the healthcare coverage and feel very lucky/blessed to have survived through a lot of surgeries, treatments, etc.  I've been NED for almost 9 years and am only getting annual scans and not on any treatments or meds.  Would I quality for SSDI? 

Luke 1:37

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CindyCo's picture
Replies 8
Last reply 3/14/2017 - 9:16pm
Replies by: kim1224, Cathy M, Bubbles, Anonymous, CindyCo, debwray, BrianP

Sharing an update here in the forum in case it helps someone else.

After being told no more immunotherapy for my mom due to dose limiting toxicities, we were pretty disheartened since all the advances right now are in immunotherapy.  We were offered Abraxane, which only seems to buy time (and Dr. Ribas confirmed that the hope is to slow down tumor progression).  Celeste sent me a lot of trials to look into, and I also emailed Dr. Weber at NYU who she has said will recommend trials that aren't his own (he did! he responded very quickly as well).

In short, this is where we are at right now:

1.  Leaning towards getting the Abraxane as scheduled with hope that there is synergistic effect with the one dose of Keytruda. I know there are Abraxane/Avastin trials at the Rochester Mayo Clinic, but we asked Dr. Ribas about the combo and while he thinks that the role of Avastin is currently unclear, he is open to giving it to us, with the only caveat being that insurance might not approve.

2.  Getting the tumor tested by Foundation One for mutations for targeted therapy.  Dr. Ribas says that there aren't many actionable mutations in mucosal melanomas, but it is worth a shot.  We are also looking into NCI-MATCH, I-PREDICT (supposedly a more flexible version of NCI-MATCH, and the rare tumor clinic at UCSD. Waiting to schedule the appointment with UCSD, which does all three of these.

3.  Seeing Dr. Hamid tomorrow.  He called me today and said that there may be trial options at the Angeles Clinic, so we are going to see what they are.  I have a feeling that it is the Glembatumab + Varililumab combo that Paul is offered, since my mom is excluded by other trials by her severe hepatitis.  Coincidentally, Dr. Weber told me about a varililumab + vaccine trial by Celldex in his email. 

4.  Depending on what my mom's tumor testing reveals, we may look into MEK inhibitors, which Celeste suggested.

5.  Looking into two trials with Palbociclib that Celeste sent to me.  However, these are in PA and Boston, so we have to take the traveling into consideration.

6.  Looking into OX-40 trials that my mom might not be excluded by, as suggested by Dr. Weber. Will do this tonight.

7.  Looking into a Hu5F9-G4 Phase 1 trial at Stanford that Celeste had suggested for Josh.

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Anonymous's picture
Replies 6
Last reply 3/12/2017 - 1:58pm
Replies by: Anonymous, jennunicorn, Bubbles, youngann

Has anyone on here had to request Patient Assistance from Bristol Myers Squibb? We are in the unfortunate position of having to do so. We have been waiting for over a week, and are anxious about our chances, We are well below the income requirements, but it is my understanding that there are no guarantees. My husband does have Medicare, but unfortunately, his oncologist requires a little over $6000 as his part before they will begin treatment, and we don't have it, nor have any way of getting it. It would really make us feel better if someone here might be able to share their experiences with Bristol Myers Squibb or any other drug company?

Alison - wife of Roy, Stage IV Metastatic Melanoma

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snow white's picture
Replies 20
Last reply 3/11/2017 - 11:10pm

I have some good news to report.  My Dad just had a Brain MRI today, the Doctors office called him a few hours later to tell him that he has NO new tumors and that the ones he had are all DEAD!!!!  SO HAPPY!!!

Dad had his second IPI infusion on February 24th and he has experienced little side effects so far.  Mostly just fatigue and a very small amount of bowel issues the day after (and really flaky skin). I remain cautiously optimistic at this point.  Paul's death shook me pretty hard, it felt so close to home. All i know is this, I am confident that Dad will be here for my daughter wedding in September and that makes me so happy!  Prayers and plosive thoughts to all of you.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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BrianP's picture
Replies 11
Last reply 3/13/2017 - 12:57pm

Just got my 12 week scan results for my Cellular Adoptive Immunotherapy + Ipi trial..  Good news is the lesions in my abdomen continue to remain stable and marginally shrink.  I'll take that result any day.  Bad news is there is a 5x7mm lesion on the brain.  My Doctor seems to think it's the real deal and needs to be dealt with.  Over 5 years in the game and this is my first foray into the Brain Met Club.  I'm at MDA now and they are scheduling me consults for Gamma Knife..  They scheduled me for a consult with Dr. Caroline Chung (radiologist) today and tomorrow with Dr. Sherise Ferguson (neurosurgeon).  Curious if anyone has had any dealings with these two? This is moving fast and it sounds like I'll be back down here the week after next to get zapped.  Normally like to have more time to research and get 2nd opinions but I think this is the right move to get things taken care of quickly.  Curious what others think about finding the "best" Gamma knife guy or gal.  Seems unlike surgery where there is definitely an artistry to it the gamma knife is mostly computer controlled based on "carefully" inputted parameters.  Feel like anyone at MDA and the equipment is probably topnotch.

Will spend the next couple weeks looking at post gamma knife options.  Leaning toward going back to nivo as soon as possible to maybe capitalize on some abscopal effect.

Brianj

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glesch's picture
Replies 1
Last reply 3/9/2017 - 5:39pm
Replies by: J.bun

My husband was diagnosed with Stage 4 Melanoma in the Lung December 23, 2016.  MERRY CHRISTMAS TO US!!!   His doctor started my husband on Zelboraf and Cotellic on February 3 by February 19 he was taken off the meds for severe rash and diarrhea.  We started back on March 3 with a lighter dose of the same medicines.  By the afternoon the diarrhea and internal itchy happended.  Doctor took him off that evening.  We are now trying Mekinist and Tafinlar.  We hope these meds will be kinder.  

yes

GLesch

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Lddaughter's picture
Replies 5
Last reply 3/9/2017 - 4:45pm
Replies by: debwray, Bubbles, Lddaughter, Mat

So my mom  got back that we are BRAF positive and we have a few more scans for her eyes, pelvis and heart. They want to start her on a S1320 trial. Honestly googling it I have a hard time interperating the results, facts and informations posted online. So I decided to stop. Has anyone heard of these? Is the BRAF Positive indicatior a good thing?

We had a great first meeting with the specialists where they want to work on pain management and then start treatments. The tests are to make sure she qualifies for this trial. I will tell you, a good specialist seem to make a world of difference. 

Any input would be fantastic. We still have so many questions but we know that is going to be the case for a good while. 

Thank you!

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NSNewf's picture
Replies 8
Last reply 3/13/2017 - 1:59pm
Replies by: NSNewf, Delores T., Mark_DC, debwray, Anonymous

As an update I am awaiting path for neck dissection (possibly 4 weeks). I met with oncologist prior to surgery and my options  are limited to HDI. 

Other than through a trial have other Stage 3 Canadians been offered other treatments?

 

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