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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Michellebelle's picture
Replies 1
Last reply 6/7/2017 - 3:43pm
Replies by: FaithRun

Hello everyone, 

 

I recently went to the doctor for a suspicious mole. Unfortunately, it's on my face. It was very tiny, black, and almost looked like a white head (but was black). It was new, had just showed up sometime within the last year on my cheek. I went in as a precaution since skin cancer runs in my family (but not melanoma). The doctor said it was black and blue with an outline of brown. It was a normal circle shape, popped up like a pimple. I think it was 2mm. 

She told me it's a 50/50 chance for melanoma or just a blue navius. I had a melt down at the doctor. I'm 29, about to be 30 next week, and I can't believe it.

Right now I'm playing the waiting game, which I'm not doing very well. I keep thinking about how I had swollen glands in my neck a few weeks ago, and really scaring myself. 

I'm just curious if any one out there has had a similar mole. Mine doesn't look like a clean cut case of melanoma. It could be a blue navius. I'm praying it is. 

But in the meantime, I'll be praying for all of you. When something like this happens, you don't realize how lucky you have it. I've never realized how much I loved my face until they wanted to start possibly cutting it all up. I hope my results come back ok, and I won't ever return to this forum again, but in the meantime, I'm thinking of you all, and wishing you all strength. Just the possibility is devastating for me. 

 

Thinking of you guys

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Bubbles's picture
Replies 9
Last reply 6/7/2017 - 10:54am

Two abstracts addressing ipi 3mg/kg and 10 mg/kg in both Stage IV melanoma and Stage III now up on the blog.  Spoiler alert:  No difference in response....big difference in side effects at 10!!  Cool link to Dr. Weber addressing the same (as well as 4 other reports) in a video discussion from the Edster on the post and also on the "ASCO brain met" link below.  Are you listening FDA?????  Have a great Monday, everybody.  C

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-ipi-3-mg-vs-10-mg-in-advanced.html

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gowlandang's picture
Replies 3
Last reply 6/7/2017 - 1:25am

Hi, I am new to the board and this is my first time posting.

My husband was diagnosed with mucosal melanoma on his vocal cords in February this year. Originally the oncologist thought it was a wrong pathology report as they had never seen it before, but after retesting it came back with the same result. They suggested surgery due to concerns of restrictions to his airway, we opted to wait and have tests to find if it was anywhere else in his body, all came back negative.

When we went to see the radiation oncologist he told us that the surgeon suggested not to go with surgery but recommended radiation. After 20 sessions of radiation it is no longer bleeding and there are no breathing issues, his voice is horse all the time and the radiation has made him very fatigued. We now have to wait for a scan date and the next appointment is not scheduled until August.

Anybody out there in a similar situation? Any suggestions what other treatments maybe available ?

We live in Canada by the way.

 

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Nick C's picture
Replies 13
Last reply 6/7/2017 - 12:56am

Just wanted to update where I am in my treatment. After being upgraded ( or is it down graded) to Stage IV in August 2015, I elected to continue observation. At the end of October, I had a node removed (golf ball size) that came back cancerous. A follow-up scan showed progression. After going thru all my options, I started on pembro the first of the year. I had a scan last week.The scan showed that all except one spot had been "resolved" or not found. The one that is still there has gotten smaller. There was signs of one new spot of uncertain significance (which we look at in three months). And today is my birthday.

Although I wanted to share some good news, I feel a little guilty in doing so. I know that there those on here that are much worse shape than me...some fighting for their lives and some that didn't make it.

I think about what my surgeon said...If you are going get melanoma, this is a good time to get it. Five to six years ago there was very liitle they could do. Hopefully,  the reserchers will be able to glean info from our individual treatments to be able to put togehter the pieces to find key in destroying mel.

You all are in my thoughts and prayers. Stay strong!


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RitysMom's picture
Replies 4
Last reply 6/7/2017 - 12:52am

Kristine is in the midst of tapering off steroids and has had a new side effect/symptom pop up. She has been feeling numbness in her right foot, and both legs from the knees down feel restless. Has anyone experienced this? Could it be a result of the tapering or the brain mets themselves? On a positive note, the other side effects she was experiencing (headaches, blurred vision, dizziness, etc.) have subsided.

Cindy 

Mom of the beautiful Kristine

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Shaneswife's picture
Replies 10
Last reply 6/6/2017 - 10:03pm

I'm so sad these past few days. I watched cancer in a single week span take my husbands cognition and comprehension away. It's taken away his independence as he has to be watched 24 hours a day. My heart is so broken and hurts for him. The rapid decline is so hard to watch and I can only imagine what it's like for shane. The brain damage caused by swelling in his brain appears to be a permanent condition as even a week at 16mg of dex hasn't resolved it. 

My nerves are so shot that I'm experiencing hives constantly and scratching raw. I feel like they are caused from emotional pain as Benadryl doesn't even touch them. And as soon as I start to get anxiety they start too. How weird how the body reacts to stress. 

I'm hoping that by tomorrow the hospice doctors are able to start engaging while we keep Shane at home for as long as we can. Our hpc doctors make house calls. 

 

janis

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Shannon B's picture
Replies 7
Last reply 6/6/2017 - 8:43pm

We met with Willie's new medical oncologist today and got the results of his MRI and PEt scans yesterday. Good news- no brain mets. Bad news, loads of places lite up. Liver, spleen, femur, bone in right shoulder, spots on ribs, lymph node areas all over. Possibly small spots in lungs. Dr. says that since lymph node under L arm tested positive for Melanoma that they are sure that is what all the spots are. 10 years ago his other oncologist said he didn't like PET scans, too many false positves. I guess my question is, should I hold out some hope that these spots aren't melanoma and request they do CT's. BRAF negative so he is going to start ipi/nivo next week.

Shannon- Willie's wife.

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Hi all,

Haven't updated on my sister, Leisa, in a little while, so here goes:

- now down to one tumour left in the liver (from 5) - that's the biggest change since her last thoracic scan 3 mos. ago

- spleen is still working at getting clear but from reading the scan it's hard to tell how many are left there - they seem to only talk about the largest one (or at least only give measurements for the largest).

Best news: nothing new and no further progression - yayyyy!!!!

She had a brain scan yesterday morning and we're holding our breath waiting for this one. If all is stable, she'll be cleared to drive again. Her last scan 3 mos ago was rated as "stable" - there were no new visible lesions. There were however innumerable little white spots which they wouldn't rule out as new mets starting but they really felt these were the result of WBR damage beginning to appear ... and as it coincided with cognitive damage showing up (her short term memory has been affected), we're hopeful the doc's correct in that appraisal.

1st Q - Re. lymphocytes - she peeked at her blood results a couple of weeks ago while getting an infusion and there were several items circled in red - one was the lymphocyte count - it's low. Researching this, it seems that low lymphocyte counts are a disease marker (and associated with poor survival) but I'm wondering if hers are low specifically because her spleen is still compromised. Otherwise, you'd think that after 20+ infusions, that count would be normal or even a bit high. If anyone has any info on this, I'd appreciate hearing it.

2nd Q - Re. trial protocols - originally, she was to have 24 infusions of nivo over 48 weeks (a couple of times, we've been given wrong info about this, including that it was to be 48 infusions over 2 years). She's had 22 infusions and though they are giving her one more next week, they say she's done and that her trial is not so much concerned with number of infusions but that it's the time factor - the 48 weeks - that's more important. Has anyone else ever encountered this?

She's undertandably nervous about coming off treatment when we are nowhere near NED. Yep, we know the nivo will keep working but still ... A year ago, with a huge tumour burden and numerous brain mets, this looked hopeless - now she's come this far, it seems crazy to go with "wait & see" when we are (possibly) so close to NED. We also inquired about removing the spleen completely - nope, they won't.

So, that's where we are at. Just want to say that, in the midst of our successes, we know how quickly this disease can turn, for better or worse and we continue to hope, pray and plead with the "gods that be" for that "magic bullet" for everyone here!!!!

Best thoughts and big hugs to all of you!!

Barb

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AliCat61's picture
Replies 5
Last reply 6/6/2017 - 4:02pm
Replies by: smiller, AliCat61, Bubbles

Roy was unable to get the 4th and last  infusion of the Opdivo/Yervoy combo last Wednesday.  After reviewing the results of all of the recent tests, there is some concern that the drug combo may be causing damage to his heart and lungs. He is scheduled for a PET scan early next week. The pet scan will more provide more information. If the PET scan indicates that he is responding to the Opdivo/Yervoy,  he may be able to skip the fourth treatment and proceed to the next phase, where he will receive just one of the immunotherapy drugs rather than the combination.  A single drug infusion should have far fewer side effects. 

Have any of you experienced any heart/lung damage and or extreme shortness of breath, etc.? The NP (doc was at a conference) said that if they gave him the 4th treatment it could potentially cause irreversible damage to heart and lungs. I must have been in shock because I should have asked so many questions...yet I didn't. I should have asked, is the damage caused thus far reversible? What are the long-term implications of skipping the last treatment? What's next if PETSCAN doesn't show response to combo? And what I really should have asked is  WHY DIDN"T YOU LISTEN TO ME WHEN I TOLD YOU 2 MONTHS AGO THAT HE WAS HAVING EXTREME SHORTNESS OF BREATH?

He's 70, and sometimes I really think they blow me off when I express these kinds of concerns, thinking to themselves, well he's 70, what do you expect?. But I know what's normal for him and what is not. I'm considerably younger (55) and I have plenty of energy to question. I'm pretty sure that most of his doctors consider me to be a giant pain in the rear, but I don't care! He needs an advocate, and I'm it.. The petscan is scheduled for Thursday the 8th and we see his doctor on the 9th. I'll be asking all of those questions and more then. As always I highly value input from any of you who have experience with these kinds of symptoms while on Ipi/Nivo.

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Anonymous's picture
Replies 7
Last reply 6/6/2017 - 1:44pm

SITUATION:
- 43 year old male
- Diagnosed with Stage IIIC Melanoma 2-weeks ago
- Had SNB surgery 3-weeks ago to remove 3 primary lymph nodes
- 2 out of the 3 lymph nodes came back positive for micrometastases (just over 1mm each)

I'm currently scheduled to have a CLND surgery on Wednesday at UCLA w/ Dr Economou.  He seems highly reputable but I found some of his explanations to be a bit confusing.  I understand the difficulties giving clear recommendations for Stage III patients, so I don't fault him but I did seek out a second opinion.  I didn't question the need for surgery, it was really about getting more information.

I went to Angeles Clinic and met with Dr. Faries who was excellent. He was able to answer most of my questions without me having to ask, he just anticipated where I was going and provided full details in a clear, concise manner.

I'm considering switching to Dr Faries, but I have a tendancy to over-think things (analysis-paralysis).  Both Doctors have been performing the surgery for more than 20 years, 30+ years in Dr Economous' case.  

I'm sure they're both talented, although I have my suspicions that each doctors may have a Resident or Fellow actually conduct the surgery under their observation.

Further complicating things, my wife and I have already rearaged our work schedules to have the surgery this week.  Waiting another week is going to cause some complications, but nothing impossible to overcome.

QUESTION:
- Am I over thinking this decision?  
- Should I just have the surgery on Wednesday as planned?
- Is there a significant varaition in outcomes / methodology for surgeon to surgeon?

 

 

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Bubbles's picture
Replies 10
Last reply 6/6/2017 - 1:35pm

Ok...so my brain is tired.  This is probably the longest and most complicated report I'll be putting up.  I combined what I thought were the most salient of the brain met abstracts here:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-melanoma-brain-mets.html  

Wishing peace and joy for each of you.  celeste

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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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