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 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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aquamak's picture
Replies 2
Last reply 3/9/2017 - 2:24pm
Replies by: NSNewf, jahendry12

Hello all, havent posted in quite a while.  I'll be going for my annual PET/CT scan in a week and a half (I alternate PET/CT and CT every 6 months).  Hoping for the best and if scans are clear, I will have reached the 4 year NED mark!  Hoping and praying!

Mela-No-More

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momof4boys's picture
Replies 2
Last reply 3/9/2017 - 2:14pm
Replies by: CindyCo, jahendry12

Josh if you are checking in, I've been thinking of you. Wondering how you are doing? Hoping everything is well.

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Nicklindner's picture
Replies 13
Last reply 3/10/2017 - 12:50pm

I have found that reading peoples good news has given me encouragement and hope so I wanted to share some of my good news as well. 

Quick Background - I am a 33 year old male initially 3c in 2011 was given a favorable outcome/prognosis after all melanoma was surgically removed.  Found a lump on my right chest wall October of 2016 and became stage 4.  PET showed that it has spread to my lung, spleen, groin, right side of my body and was not given a favorable prognosis. 

I started IPI/Nivo combo 12/15/16 and got nearly every side effect imaginable - it was comical.  After 3 treatments I got a severe case of gastritis.  I was throwing up blood, liver enzymes were elevated, Spleen was inflammed.  So they cancelled the 4th treatment and put me on high dose prednisone. 

Due to debilitaing back pain my doctor thought that the cancer might have spread into my spine so we scheduled a CT scan.  I got the scan results back today.  So the scans did not show any progression into my back - that remains a mystery.  The good news is that the melanoma is no longer detected in my groin or on my right side.  The tumor on my lung shrunk from 3.8cm x 3.4 to 1.8cm x 1.7.  The tumor on my spleen shunk from 1.6cm x 1.7 to .5cm x .6. 

My doctor was very encouraged by this as was I.  It was so awesome to hear the excitement in her voice as she shared this news with me.  We are planning to resume the opdivo treatment at the end of this month or in April once bloodwork gets back to normal. 

I wanted to thank everyone on here for the knowledge, time and compassion that they have shared.  You have helped make this journey for me much more manageable and have provided medical hope when I wasn't sure that there was any.  I realize that this journey will probably never end for me and I will treat this like a chronic illness for the rest of my life but I am starting to think I might be able to see my kids grow up and have kids of their own and that is a good feeling.  I think about many of you daily and pray for you and your families as well.  I wish you all the very best. 

Thank you!

 

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Dreaf01's picture
Replies 2
Last reply 3/8/2017 - 12:34pm
Replies by: Hukill, UBContributor

Hi all! Hope everyone is kicking Mels A**. I was diagnosed officially as Stage 1b on early Jan. After a wle and slnb, margins came back clear with negative nodes. Primary was 1.5mm on my right upper thigh, no ulceration, but 4/mm2 mitosis. Anyways over the last week I have noticed 3-4 hard little lumps in the middle of my upper abdomen. They almost feel rubbery and seem to move slighty. Could this be mets? I have also had some pain off and on, on my right side upper abdomen. I dont go back to see my surg. Oncologist until 4/5, and am wondering what doctor to call. Any advice would be appreciated.

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daughter1's picture
Replies 1
Last reply 3/8/2017 - 12:27pm
Replies by: Hukill

I was wondering if you could help me. I have been reading number of "mets" and wonderful news about the immonotherapy.   My mother is a patient at Sloan.  She had a new cat scan and MRI done at Sloan prior to starting her opdivo/yervoy treatment.  

The scan came back with good news in the brain- nothing

but the liver had two large masses.

 Numerous bilobar hepatic metastases are

identified. Although differences in technique likely account in part for

the apparent change many more lesions are seen on the present scan than on
the previous. A 4.0 x 4.3 cm mass in the posterior right hepatic lobe
previously measured 3.5 x 2.8 cm. A 5.4 x 4.1 cm mass previously measured
5.4 x 3.5 cm. Tumor likely invades through the hepatic capsule. Additional
numerous lesions are now evident that were barely if at all perceptible on
the previous examination. No intrahepatic biliary ductal dilatation.

 

My question is this-  it seems as if this is all over her liver.  Providing this combo works, can it truly shrink these masses after only 4 treaments?

She is doing very well with very little side effects. just fatigue so far.  

I am just confused because I read all these promising stories but they all seem to refer to "mets" and have heard very little about "masses"

is it the same thing?  how do you all know the number of mets?  

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