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
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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Anonymous's picture
Anonymous
Replies 14
Last reply 3/12/2017 - 1:33pm
Replies by: Anonymous, jennunicorn, JustJaren, Bubbles, Ed Williams

First of all, sorry for my bad English.
I'm 21 years old middle eastern female and a mother for a new baby for the first time.
Two suspicious lesions was removed today. One of them resembles SSM and the other one looks like nodular melanoma, both lesions are dark black and nasty looking. I noticed them during my pregnancy.
I'm in a deep mood depression and loneliness which I haven't told any one from my family about this except my husband. I just don't want to but my family in stress and worry. My husband is very supportive but he is expecting that my results will be totally benign, but for sure it's not! I feel like I got my PhD in skin cancer due to the hours I've spent in the last few months googling about melanoma and I'm really sure I have it. Instead of enjoying with my new baby I'm thinking about my death all the time and what the future had hidden for me, will I even live until the age 30? Will I be able to see my little girl growing? Only God knows.
I'm so sorry guys but I found this community very supportive and I really don't know what to do by this stage:(

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Tamlin's picture
Replies 2
Last reply 3/12/2017 - 10:13am
Replies by: UBContributor, Anonymous

Hi
I had a toe amputation on right foot 11 years ago due to 4mm ulcerated melanoma. It returned to my right groin in May 16 (golfball size) and had a lymph node dissection (11 nodes removed and cancer contained to one node) For the past couple of weeks i have had a burning pain across upper back and neck, a dull pain in right rib at back, and an occasional throbbing pain at my right hip bone. Can this be a sign of metastases?
Thanks

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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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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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jennunicorn's picture
Replies 50
Last reply 3/11/2017 - 2:54pm

I always love to see some of my fellow melahomies post good news on here, brings a bit of hope to our world that can be full of doubts and uncertainties. 

So, yesterday I got some good news of my own after my PET/CT scan on Tuesday... the left groin that we knew for sure had a recurrence of melanoma is now showing NO ACTIVITY on the PET scan and much smaller on CT!

The other lymph nodes that had been lighting up but we didn't really know if they were lighting up because of melanoma or because of the treatment (can't go around poking my whole body with needles to find out if every area that lights up is positive for mel) are now either not lighting up at all or have much less uptake and are all smaller in size. My spleen is also back to a normal size.. it was quite enlarged at my last scan.

This is the closest to NED that I've gotten in quite a while... doc won't throw that term out there just yet, but perhaps after the next scan in a few months I'll be able to use those lovely letters again. Continuing on Nivo only infusions every other week for a year... as long as everything continues on the right path.

As far as the anemia mystery, still don't have an answer for that. I am still showing as anemic on my blood tests. No iron deficiency. Reticulocyte count is normal, so it's not hemolytic anemia. Waiting on my B12 blood test results to see if I'm deficient in that. For now, the mystery continues. But, I feel pretty good.. besides my joints making me feel like an 80 year old some days. 

Enjoy the weekend everyone, sending love and hugs to anyone who needs a little extra right now.

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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RitysMom's picture
Replies 11
Last reply 3/11/2017 - 8:28am

Hello all,

I have been a lurker since August 2016 when my 31 year old daughter was diagnosed with Stage IV Metastatic Melanoma. I’ve found lots of info on this board, but have not been led to post til now. I’ll give as much background as I can before asking my specific questions.

Kristine’s primary was a melanoma on her back in 2013. They did a wide excision and that was that. She was visiting in May 2016 (she lives in Alabama, we live in California) when she felt a lump under her breast that was painful. After returning to Alabama, she saw her dr and had the lump biopsied. It came back as melanoma. She had a PET scan and MRI at the end of July. On Aug. 3, 2016, we received devastating news. She had numerous lesions throughout her body, including in her brain, liver, lungs, and spine. They said they were too numerous to count. She had three weeks of brain radiation and then began the tafinlar/mekinist combo. She very quickly noticed the tumors shrinking. In early Nov, she had a brain MRI and it showed that all the brain mets were gone! We were thrilled. She was struggling with side effects, but we were seeing amazing results. She had another brain MRI in January...still clear. Now we were just waiting for another PET scan to see how taf/mek was affecting the tumors in her body.

She had the scan last Thursday and got the results today. The encouraging news...there are only four tumors left in her body. The discouraging news...two of them were not in the July scan. Her oncologist expressed concern that they were new. He said to continue on taf/mek until she stops responding and then move on to immunotherapy. He is going to try and get her another PET scan in 3 months when she sees him again.

Some questions that I have now:

My hope is that the two ‘new’ tumors could have developed in the five weeks between the July scan and when she began taf/mek in September...is that possible?

The dr said to stay on taf/mek til she stops responding and then move on to immunotherapy...will she ever be able to be off meds?

Dr also said that she’d know she isn’t responding to taf/mek when she starts to feel lumps returning...does this mean that the cancer is not really going away?

Is surgery and/or radiation a possibility for the four tumors that are left? She sees her radiation oncologist in April.

I’ve read that she really needs to be seeing a melanoma specialist. She will be looking into whether her insurance covers a second opinion. Does anyone have any insight into the process? Could anyone recommend a specialist? We know she’ll need to travel. She is located in Foley, Alabama, near the Gulf Coast and halfway between Mobile and Pensacola.

Thank you for reading and for any insight you can give.

Cindy

Cindy 

Mom of the beautiful Kristine

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Cathy M's picture
Replies 24
Last reply 3/11/2017 - 8:22am

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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KRob's picture
Replies 5
Last reply 3/10/2017 - 10:30pm

Long time stage IV  survivor and (one time) regular poster, I like to drop in to see what the latest is and share with all the new folks that there is hope in surviving melanoma.

I just passed the 12th anniversary of being diagnosed stage IV and am currently NED. 

I am always thinking of my fellow MELS and hoping nothing but the best for all of you in your journeys.

Also, anyone in the central Ohio area who is looking for a melanoma support group, we have one that meets at 6:30- 7:30/8:00 p.m. the 3rd Wednesday of each month at the Stephanie Spielman Center at OSU/James Cancer Hospital in Columbus, Ohio.

Information on our annual melanoma symposium, the latest in research and treatment options, as well as, guest speakers and recreational outings throughout the year, make it one of the best support groups in Ohio! Our facilitators are members of the melanoma team at OSU. They and other members of the group, including our docs, ride and/or participate every year in Pelatonia- they really live, breathe, and dedicate their lives to fighting melanoma. 

Come join us!

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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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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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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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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