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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Nal64's picture
Replies 31
Last reply 6/6/2017 - 12:57pm

I wasn't sure  if anybody would see this when I posted it under the last inquiry about Josh. Hence, the new topic.

Josh brings so much  to the message board and has always been the person I look to here for info on  the rare "desmoplastic mel"  diagnosis. We use the same doctors and he has always been just a step ahead of us in treatment (my husband is also stage IV).  When I couldn't find him on the message boards anymore I got scared and somewhat stalker-y.  I was able to locate his brother who had set up a go fund me page for Josh.  I sent him an email inquiring about Josh and got this reply:  

Hi, Nancy
I was with josh last night and read your email to him he was touched! My brother is fighting, he was put on hospice two weeks ago. They have stopped treatments and now the hard part . Josh is a wonderful person and has done so many good things in his life.
He served his country in the Marines he is an amazing father , husband and the best big brother anyone could ask for. There will be a special place in heaven for him. He has touched so many on his journey. We pray for your family and for your husband to heal. God bless and thank you for reaching out it mean a lot.
Mike

I know many were wondering about him and I tried to convey how important Josh is to us all.  Keep his family in your thoughts and prayers as they go down the road none of us wish we were traveling.

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Hukill's picture
Replies 13
Last reply 6/6/2017 - 12:47pm

I feel bad posting this as some of the people I have followed for the last year are not doing so well. In May of 2015 I had a stage 2B on the crown of my head, june of 2016 it became stage 4 with 1 tumor in my neck removed by surgury and 7 in my lungs that were non-surgical. I started the ipi/nivo combo in July 2016. After 5 combos and 13 nivo doses all 7 nodules in my lungs are gone!!!!!!!! I did have a 3 cm cyst on a kidney that was not there on my last scan but the radiologist and onocologist don't beleive it is melanoma and we will will look at it in 8 weeks and continue on the nivo every 2 weeks for now. So with the new spot on my kidney I am not as happy as could be but I will take it. For those who are not sure to go the combo treatment due to side effects for me it was worth all of them, even the 5 I am still dealing with everyday. I will always stay on this website as there are so many wonderful and very knowledgable people here. In 2015 I knew melanoma would show back up and it did, I expect it will again. Thank everyone for your support as it really means so much.

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FaithRun's picture
Replies 11
Last reply 6/6/2017 - 10:26am

It has been one heck of a journey.  3 years ago I had a mole that turned out to be melanoma.  It was surgically removed and the sentinel lymph node was not taken because it was in a complicated area.  I went in for my 6month regular dermatology check ups and 3 years later I develop these nodules on my scalp.  Biopsy results came back as metastatic melanoma.  Around the same time I had fallen off my horse and got an MRI that revealed a tumor in my sacrum.  All in all, I have tumors in my scalp and other areas in the skin, my sacrum, hip, vertebrae, shoulder and sternum, liver and left lung. 

My Oncology Dr has been fantastic!  From the moment I had met him to now he has been charging forward a complete and non tiring man fighting with me for my wellness.  I was admitted to the hospital the first day I saw him and was in the hospital for a week to get myself good with radiation therapy on the worst spots, biopsies, blood tests and immaging.  I am currently home and doing well.  I have taken a very serious role in my diet and how that is helping me stay healthy (I am glad to hear when my Dr says that I am looking strong)

I have hit some hurdles along the way.  My Sternum is very weak due to the tumors and I have fractured it after a simple cough.  And my shoulder is fractured due to a tumor breaking through the bone.  But, I am dealing with that.  Ice, medication, bone broth and good nutrition. 

We received the results of the genetic testing of the biopsy and it is a BRAF +.  So, we are starting treatment with Tafinlar and Mekinist.  I am very excited to start treatment and get further along the road of healing. 

My question is how has this treatment worked for other people.  In their personal experience?  I have read about the side effects and the clinical trials.  Any insight or things that have helped along the way would be greatly appreciated.

Riding on Faith

 

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daughter1's picture
Replies 8
Last reply 6/6/2017 - 10:20am

HI.   I haven't posted in a while and I just wanted to give an update and post a few thoughts/questions about my mothers journey.   August of 2016 she had a CT scan because she was experiencing discomfort.  Nothing was there.  Not a thing.  February 2017- she thought she was having gall bladder attack.  We took her to the hospital thinking that she needed gall bladder surgery.   Gall bladder was clear.  Liver was not.  In hospital for a few days.  Doctors suspected melonoma because of her history (2 wide excisions performed on her back- 12 years ago- deemed clear)   Biospy came back benign.  we were elated- but I couldn't rest until we had the best of the best telling us she was fine.   Made an appt with Sloan (we live in NJ- thankfully!)  There testings came back with absolute certainty- their biopsy- Stage IV metastatic melamona.  Found in her liver, spleen and tiny in her lungs.  Started ipo/nivo in March.   First treatment- fine with very little side effects (occasional fevers and sweats)  Second treatment-  fevers worsening and night sweats something fierce.  Kidney and liver levels postponed third schedules treatment.  Was put on steroids and monitired twice a week with blood work in Basking Ridge.  

 

I should mention that when we arrived for the third scheduled treatment that she didnt receive- we got the results from the first cat scan since starting immunotherapy.   Report was positive- ofcourse I was looking for a miracle but I was assured that the results were good   Slight decrease in all tumors and even more remarkable was the density of these tumors.  Dr. assured us that going off the schedule wasn't that big of a deal because the meds would still be working.   

 

Ok- so moving on-  three or 4 weeks- (I don't remember!) of steroids and blood work, she was approved to receive third treatment yesterday.  She received a second cat scan last week prior to this third treatment.  Dr. came into office very pleased.  Said that he is now going to move her to just Opdivo every two weeks.  He was concerned that the combo would have side effects that could hospitalize her.  He was happy so we were happy.  

I got home and took a look at her cat scan report.  (he didnt show us the results yesterday in his office- and at times, I will be honest, he makes me feel awkward asking questions.- I will accept all of that- just save my mothers life- you can make me feel any way you want!!)  

So the report showed little to no decrease at all.  Positives- no new tumors.  (remember how aggressive this is from august to feb) but the size of the tumors didnt really shrink at all.  

I guess there is a part of me that wanted better news.  I know I know- this is a marathon not a sprint- but her side effects weren't totally crazy from the combo- why couldn't we just continue with it. 

 

Thoughts?  This is a true nightmare. I hate when I hear this extends lives- although its wonderful that lives are extended by this amazing revolutionary thing called immumotherapy and I thank God that he put brilliant scientists on this earth to tremendously improve the way we treat cancer,  I am constantly worried about this-   how many months years, are you talking?  I know we don't have a crystal ball- but is it possible my mom could live like this for years and years.  Is it possible she will be here to see my sons get married.  

Need some hope here.  THanks in advance.  And thanks to all of you that selflessly respond and share your own stories. 

 

Sincerely ,

Robin

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Anonymous's picture
Replies 9
Last reply 6/6/2017 - 9:24am
Replies by: Nemesis, Anonymous, ida_aud, Janner

Hello Everyone,

I have two questions in regards to this new journey.

First, I will talk about my diagnoses, I am 22 and was recently diagnosed with stage 1a melanoma with 

0.23mm in thickness

ulceration: absent

Regression: present

deep margin: negative

peripheral margins: positive (have already had the WLE procedure and got the all clear that got everything)

Mitotic Rate: 0

Microsatellitosis: Absent

Lymph-Vascular invasion: absent

Lymph nodes: N/A

The mole that was cut out was on my upper trunk above my scapula near my shoulder, I am almost certain this was caused by a nasty blistering sunburn I had as a child. I have known about the dangers of melanoma way before this diagnoses, and before this mole was biopsied, I have had 15-17 other moles biopsied before this, all have come back mildly atypical at the worse. With this being said, my question in regards to my recent diagnoses is how low of a risk is this mole? I know that my risk falls somewhere as the ten-year survival rate of stage 1a is 95% but just wanted to hear some others that can add to these findings. I am pretty scared but am ready to move past this and am glad that I found it early. Is there any advice anyone can give for this diagnoses and how to deal with it?

 

Second question:

I am also worried about now having another melanoma on me right now.. I wanted to see if anyone could give any advice on how common it is, if it is at all to have two primary melanomas on your body at the same time. I have read that my risk for a new primary is around 4-8% but wanted to see if anyone could point me to studies or from own experience on if they have had two primaries at once or if they occurred later in life. Thank you for reading this, and please let me know your thoughts. 

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Anonymous's picture
Anonymous
Replies 17
Last reply 6/6/2017 - 7:34am
Replies by: Anonymous, Rocco, Mat, marta010, raun cesar, Newmanbell, MovingOn

Hi - has anyone experienced recurrent acute anterior uvieitis bilaterally and headaches while being treated with ipilimumab? If so, was discontinuation of ipi reecommended? Thank you 

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Jeff_in_FL's picture
Replies 7
Last reply 6/5/2017 - 11:16pm

Hi all,

Here's a question that just popped into my head: Just had Excision w/nodes. If everything comes back clean, would a PET scan possibly be a good idea just to wrap things up a little better? 

Just trying to keep things straight in my head. The surgeon took the closest SLN, and said that there was no need to take any others that lit up on the scan because any irregularities would show up on the closest one ...no need to check beyond that point. Hope he's right! Anyway, just wondering how often a PET scan is used after a clean margin, node check.

Just loved those pre-scan injections!

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Replies by: Anonymous, jennunicorn, AliCat61, Newmanbell, HopefulOne

Hi all,

First I want to thank you for all that you do to answer questions (especially Celeste!) from us terrified patients with this terrible cancer.  I am addicted to this site and read everything I can daily.

My husband is State IIIb, had a primary removed in 2012, a tumor off his chest earlier this year and 22 lymph nodes removed under his right arm with one just having melanoma.  They have him on 10 mg of Ipi as an adjuvant treatment.  He has done 3 treatments so far.  He is having awful headaches and his eyes really are very red.  I noticed fatigue is playing a roll here too.  We expected some type of reaction.

I realize some of the combos out there are for Stage IV, but everything I am hearing about Keytruda, has anyone had ths for adjuvant treatment or is it only for Stage IV treatment?  I had asked our doctor about the combos but he stated that was more for treating multiple tumors.  I hear so many good things about Keytruda and overall surval, wondered if this was possible for adjuvant.

Please pipe in the treatment everyone has endured for Stage III (he is Stage IIIb).  Thank ou.

 

Donna

 

 

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Nick44's picture
Replies 6
Last reply 6/5/2017 - 12:30pm
Replies by: Threefitty, Franny, UBContributor, Anonymous

Hi all, I'm in that terrifying window after my first-ever biopsy. Being pretty freaked out, I thought I'd try to gather some info here while I wait. My main question is basically how worried I should be about the following situation:

I'm a 35 year old white male, and just had my first dermotologist checkup in 2 years. She immediately noticed a funny looking mole on my outer ear, which is apparently a danger zone. I saw a different dermotologist for this same mole about 2 years prior, and he wasn't very alarmed. I haven't noticed it change shape or color. It was a little blueish, not raised at all, totally guessing but maybe 4mm, fairly symmetrical, and a few people like my mom and wife have commented on it.

So the new dermatologist immediately says she wants to biopsy this thing, and before I know it my ear is numbed and they've got the scrape razor out. I'm ok with all of this - safety first. So they scrape out a big old chunk of my ear. The mole was not raised, but they dug down pretty deep - again totally guessing but maybe 2mm or a little more. It's a good size chunk out of my ear.

Here's why I'm freaked out - that sucker goes deeper than that! She said she wasn't going to take all of it since it went that deep, and she had enough for the biopsy. You can still clearly see the mole in the crater left behind. So here's the million dollar question -- does this funny looking THAT DEEP mean cancer for sure? Do benign moles go deep into the skin? Any insight is welcome as I settle into this terrifying week of waiting for results. Thank you!

-Nickk

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Bubbles's picture
Replies 9
Last reply 6/5/2017 - 7:40am

Though it is with a heavy heart....I have begun plowing through what I think are the most pertinent ASCO abstracts for folks here.  There are many sites through which you can read the abstracts and reports as well as see videos of presentations and discussions for yourself and I encourage you to do so!  However, I will be putting abstracts grouped as they seem to read best, with pertinent background data if I have it, and my interpretation of the expert's jargon in red up on my blog.  The rough topics I have made are:  brain mets, ipi 3mg vs 10mg, outcomes after stopping immunotherapy, new combo's and meds (ipi with CD47, pembro with entinostat, nivo and anti-LAG-3), intralesionals, news for NRAS folks, and a few others.  

Here is the first installment - posted today:   ASCO 2017: Nivo or Ipi/Nivo combo in melanoma after progression on ipi or anti-PD-1

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-nivo-or-ipinivo-combo-in.html  

In honor of Jamie and Joshie....

I wish each of you well.  Celeste

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Shaneswife's picture
Replies 13
Last reply 6/5/2017 - 2:58am

It's with a heavy and broken heart, that after a lot of talking, Shane has decided to cease life sustaining therapies. He wants to spend what time he has left enjoying family. We have in home hospice supports being put into place. My heart is shattered but I understand that this has weighed heavily on his heart but this is the right decision for Shane. 

 

Janis

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snow white's picture
Replies 21
Last reply 6/4/2017 - 11:56am

Hello my friends.  

I wanted to let you know the latest with my Dad.  Its been a bit of a roller coaster ride for sure.  BUT, as of this moment ALL of his scans are CLEAN!!!!  His doctor is absolutely amazed at the response he has had to opdivo/ipi.  His liver numbers have been on a roller coaster ride, but we think we finally have it under control.  Dad went for his MRI a few weeks ago and the doc said it was "as clean as a whistle", words that you want to hear from your Neuro.  They took him off of anti-seizure meds and steroids, oddly enough he had a small seizure about 3 days later and had to go to ER.  So he is back on the seizure meds and a very small does of steroids.  He had his first Keytruda infusion about 9 days ago, so far so good.  He is not feeling that "well' since the seizure, but we attribute it to the meds.

So as of this moment he is NED.  Its shocking to be able to say that, and I know that could change quickly, but for now I am so grateful.  His doc at the Angeles clinic is an absolute doll, we love her so much.

To be honest, I have held off posting this because I am still scared.  I am not superstitious, but I am almost afraid to say it out loud, i don't know if that makes sense.

Anyway, I am still reading the board often, I am so sorry that there are so many new members:(

Thinking of you all especially: Josh, Deb, Jenn, Niki, Celeste, Adrianna & Rob, Ed, and a few others I am sure I have missed.

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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Replies by: AliCat61

I came across this article today and there is a list on the bottom that shows risk factors for melanoma. There are a few that surprised me.

http://www.news-medical.net/news/20170523/Melanoma-could-affect-anyone-r...

"According to the Rush Department of Dermatology, a variety of physical, historical, and genetic traits increase the risk for developing melanoma, including the following:

Having a mole present within the first two weeks of life (a birth mole) (10-fold increased risk)
Having a personal history of melanoma (nine-fold increased risk)
Having a family history of melanoma (eight-fold increased risk)
Having numerous moles and/or atypical moles (eight-fold to 40-fold increased risk)
Having had a Spitz tumor removed (eight-fold increased risk)
Having had an atypical nevus removed (seven-fold increased risk)
Having had at least 2 moles removed in the past (five-fold increased risk)
Prior treatment for psoriasis with more than 200 PUVA treatments (psoralen pills and ultraviolet A radiation) (five-fold increased risk)
Having had a basal cell cancer or squamous cell cancer (four-fold increased risk)
Presence of dense sun-induced freckles (three-fold increased risk)
Immune suppression related to disease or medication (three-fold increased risk)
Having red hair (two-fold increased risk)
Having Parkinson disease (two-fold increased risk)
Multiple sunburns in early childhood (two-fold increased risk)"

The first thing they asked me when I was diagnosed was about sunburns. I know I haven't had many sunburns in my life, in fact I tan quite easily. This is the first time I read something that agreed with my thoughts on the matter.

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judyk's picture
Replies 2
Last reply 6/4/2017 - 7:49am
Replies by: KG, foodie22

i was dx with naso/sinus mucosal melanoma 5 years ago i opted for surgery and radiation and more surgery to keep it at bay in my nose. now the PET shows 2 spots in my liver. i feel well but need to have a biopsy and then decide from there. i have been putting off immunotherapy since i dont have any of the markers and it is for skin melanoma. they dont have any specific treatment for mucosal other than use the immunotherpy for skin. recently, i am hearing that there is a 5 year survival rate for 20% of patients. hope that is true.  please let me know if you have mucosal and how you are doing. and what the treatment has been.

thanks   jk

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HopefulOne's picture
Replies 13
Last reply 6/4/2017 - 7:25am

Today marks my husband's second "birthday" as he calls it. Two years that he's been NED. Two years since he started Keytruda. 

As we celebrate this day, I remember where we were just four years ago. Faced with a Stage IV diagnosis, a tumor ensnared around his spinal cord, the despair of a failed clinical trial and all two weeks before our wedding. 

Fast forward two weeks from then ... Despite undergoing major back surgery, Joe got on a plane and we flew to Vegas to get married on the day we had planned, June 1, 2013. Our overall amended wedding/honeymoon plans now included driving up to Lake Tahoe to visit with vacationing family and then return to Vegas to fly home to Pennsylvania. 

But by the time we made it to Tahoe, the trip was taking a toll on Joe and we had to fly home from Reno just two days after arriving there. 

At all the airports during our travel, I was pushing Joe around in a wheelchair and he wore a pretty heavy-duty back brace. If someone asked what was wrong, Joe just said, "I had back surgery." He didn't share the cancer drama. 

At Reno, we boarded our Southwest plane first and got settled in the first row. Joe next to the window, I in the middle seat. Next to me sat an older gentleman. He asked Joe what was wrong and, to my surprise, Joe revealed: "I've got cancer. I had a tumor around my spinal cord." The guy said wow and wished him well.

As the plane sped down the runway for takeoff, the man turned to me and said, "I had cancer too. Twice." "Wow," I said back, wondering in my head what kind he had.

As the plane soared into the air, he turned to me and said, "It was melanoma. Twenty years ago when there really wasn't any treatment at all. It was under my armpit and in my lymph nodes." This is EXACTLY how Joe's melanoma had resurfaced after 18 years of being "gone." Just seven months before his back tumor.

I feel that day, as we flew thousands of feet in the air, we were touched by a hope angel. 

That the road ahead might be rough. That more surgeries might be in our future. But that more important than anything was to never give up, to always have hope.

The reason I share this story with you? My sincerest wish is that it brings you hope, at this moment you so yearn for it like I did that day, whether you're reading this at 35,000 feet or while sitting at home nestled on your couch.

All the best always,

Kimberly

 

 

 

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