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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aziza's picture
Replies 4
Last reply 3/6/2017 - 10:15pm
Replies by: Anonymous, aziza, CindyCo, Bubbles

I am quite new here.

We are Thai and live in Thailand.  My mother, aged 77, found a breeding so she went to see an OB GEN doctor on January 13, 2017, at a small hospital. She had a biopsy and a results shows a malignant mucosal melanoma. She was referred to an OB GEN doctor at Chulalongkorn University Hospital. The doctor confirmed that the melanoma is at vagina and cervix. Not sure it started from cervix or vagina.

She had an operation on February 6, 2017, removing her ovaries, tubes, uterus, some upper part of her vagina. However, the doctor said he could not remove all dark spots in her vagina that he found during the operation.  The specimens have sent for more biopsies for BRAF and blood test for MSI. 

She will have a radiation (external beam) next week, which will last almost 7 weeks.

Melanoma is such a rare case in my country.  Mucosal Melanoma is even worse.

In case you have a similar case to my mother's, please advise me in what treatment that works well. Or if there is other methods that work, please let me know. 

I also have biopsies results.  Can I post them here? So you can help me.

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Today Dr. Ribas told us that immunotherapy is not an option anymore for my mom.  After getting hepatitis and colitis from one dose of ipi/nivo, then high liver numbers from one dose of keytruda, he does not think her body is able to take immunotherapy.  He is planning to have her start Abraxane next week, which is a chemo.    A quick search of this forum shows that not many people are on Abraxane and it's mostly offered when there aren't many more options. It also looks like a lot of clinical trials will be out too, since most are immunotherapy based. 

I'm afraid to ask, but can anyone share their experiences on Abraxane?

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Replies by: cancersnewnormal

Interesting article ofrom the New York Times today on health and who to tell if something is up...

This part reminded me of how much we teach and help each other:

When patients seek out others with similar illnesses, their knowledge grows exponentially. “It’s more scalable, less serendipitous,” he said.

Even my mother, when she broke down and divulged her operation to a friend, who happened to have the same condition, radically changed her course of treatment.

Dr. Wicks’s research shows that patients who participate in peer groups have learned tips about drug sequencing or little-known specialists that proved critical to their care.

“The value of a tweet-length piece of information can be the difference between life and death,” he said.

Keep Calm and Lurk. - What a great heading!

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CindyCo's picture
Replies 5
Last reply 3/6/2017 - 12:19am

Mom's CT shows progression to liver and lungs, in addition to her inguinal lymph nodes.  We are very devastated.

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So we saw Dr Spreafico today at PMH. They want to move Shane off the braf/mek inhibitors and onto ipi/nivo. But there are major roadblocks to getting good to that point. The first is that Shane is on 16mg of dexamethasone per day. You can't be on steroids and immunotherapy according to the specialist (although I've read a cpl articles suggesting that isn't entirely true).

The problem is when they taper his steroids he gets the shakes like a Parkinson patient in his hands, horrible cramping all over his body and terrible headaches along with an inability to eat.

So she said he needs more radiation. She's doing a consult but she was frank and said she believed he had too many tumors for gamma knife. So that he probably will need an additional 5 treatments. But because he already had 5 high dose, he will lose his short term memory permentaly.

The next roadblock is ipi and nivo are not approved as a combo in Canada. Only separately. So we'd need our provincial health care to pick up the nivo and we have to convince our insurance company to pay for ipilimumab.

The doctor was highly concerned about the aggressive quick spread of his cancer. There will have to be a washout period between the radiation and the immunotherapy so he will have to stop the braf/mek drugs before radiation. She had serious concerns about tumor growth during the washout period of upto 6 weeks as they have to wean him off the steroids.

That was my day in a nutshell.

Janis

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/5/2017 - 3:40pm
Replies by: messedmelanocytes, Anonymous

Hi Everyone,

Firstly thanks to all of you for being here, you have anchored my sanity for the psat few weeks since hearing the words MM from my doctors office. I have been roaming around the internert but mostly on this site to reeducate myelf about MM.

My first education on this subject was back in 1995 when my Father died of this illness. I was in my 30s then, I was told I have his skin so this disease will come one day for me too. So, I started visiting dermatologists annually and had many biopsies of moles, all of which were negative. After ten years of annual visits and negative biopsies I dropped off in both my visits to dermatologists and my attempts to understand MM. I had always been sun smart, wore sunsreen, knew the right ones to use, never had a sunburn, never visted a tanning bed, avoided mid day sun or prolonged exsposure. So, I fugured I had out smarted the threat.

Fast forward to Jan 2017 at my annual physical my GP recommended i see a dermatoogsit for two moles she didnt like the look of. One biopsy came back as MM in situ and the other as dysplatic nevi. Wide excision was recommended for both. Last month, the wide excision showed them both to be MM in situ. I dont fully understand the pathology report which says:

Microscopic:

1) An increased number of abnormal melanocytes disposed as solitary units and in nests are present at the dermo-epidermal junction and above it.

Diagnosis:

1) Melanoma in Situ, residual, completely excised

2) Scar tissue , Negative for Malignancy  

Note: 1) This neoplasm is located 3.8 mm from the closest lateral margin 

The plastic surgeon said I must go back to have more removed from #1 because the margin in not wide enough.

My questions on the pathology report, if anyone knows are, 

1)what does the residual term mean for #1 site?

2) what is the refernce to scar tissue for #2 site? Why is it negative for malignancy? Does that mean the biopsy saying MM was wrong? Or is it possible that the biopsy reomved all of the malignant melanocytes? Why does it not say how wide the margins are and no mention of a neoplasm?

3) why is there a microspcoic description for site #1 but not for site #2?

4) does the reference to the dermo-epidermal junction mean that this was almost a stage 1 rather than an in situ?

Outside of the pathology reports, I also have some in general sort of questions.

1) Should I consider genetic testing, would that be of any benefit to me? My Father's father died of prostrate cancer and  he also had a brother die of pancreatic cancer. If I understand the genetic information on MM, these are all involving similar gene mutations.

2) How can there be a link between MM and the immune system not recognizing the cancerous cells if the circulatory system does not meet the epidermis where the Melanoma in situ resides ?     

3) Can the process of biopsy and excision introduce the malignant melanocytes to the circulatory system increasing the risk of them travelling to other organs?  

4)  Going foreward what lifestyle changes do most patients make? Do you avoid all sun, pretty much avoiding going outside at all when it is sunny? Is it too late now to benefit from a change of habits for me?

I am going back to the dermatologist this week to have more moles looked at and to take mole mapping pictures i have that were done 20 yrs ago. I will feel muich beter if she says she sees no additional sites of concern, somehow though, I think this is unlikely. So, then I will wait and hope that if they are biopsied there are no more mm in situ or worse found.  

I know I am lucky because what has been found was caught early, I am worried though about a few other moles now, which I read is a common reaction at my stage in this situation. It is taking a really big toll on me mentally. If I didn't have the family history I would feel like I will be one of those people who deal with this and then never hear from MM again. But because of my genetics it is so hard to be optimistic, I feel like I'm stanidng in front of a firing squad just waiting to hear the guns fire.

I want to exploit my good fortune in find this early, but im not sure how to best do that.

Thank you all for being here, your electronic hand holding is increadibly valuable.   

  

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UBContributor's picture
Replies 5
Last reply 3/5/2017 - 3:40pm
Replies by: J.bun, UBContributor, jennunicorn, Anonymous

Forum folks, what is the regular follow up should be in my case? I keep hitting odd drs who recommend me nothing, but I can see you all being followed up, well and regularly.

Mid Nov 2016: dx-ed by dermatologist Dr Porres of MD, he gave me a very basic report "MM, margins are clear", no stage, depth or mitotic rate. A week later he made 5 mm cutting of the skin around the initial spot and sent me home saying nothing else is needed ever, no follow up.

Early Jan 2017:  After reading Internet and consulting here with you, guys, I found a different hospital, got pet scan, more skin cut and 2 lympnodes removed in groin, all is clear. Here the drs suggested to get MRI annually if i wish, nothing else.

Don't I need at least a dr's check 3- or 6 monthly? The mole was an inch above ankle bone, pencil eraser size, nasty looking, colorations, thicker, I would say, most probably stage 1b. 26 y.o, male, otherwise totally healthy.

Thank you for support. 

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BrianP's picture
Replies 2
Last reply 3/5/2017 - 1:59pm
Replies by: 45_dps, Ed Williams

Sounds like these trials would be available for stage III resectable patients.  I wasn't aware of these type trials being available in the US.  Would be an interesting option for some patients if they were available.

http://www.oncologytube.com/video/neoadjuvant-therapy-in-bulky-stage-iii...

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/5/2017 - 1:48pm
Replies by: dmturner, BillMFl, brendon, Jon M

Hi All;

 

I am familiar with Jenn Unicorn (thanks for your posts!) 

Anyone else out there decide to do a 'watch and wait' instead of the groin dissection? 

If so, how are you? What was your first dignosis (thickness, ulceration, etc.) and have you reoccured? If so, when/where? Age range? 

I have previously done some crowd sourcing here on this topic without much response. Hoping everyone is out living life!

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/4/2017 - 12:05pm
Replies by: David McCaw

Hi Guys,
Does anyone know if you can have your cells frozen if it works for when you need it. Thought that i have wounderd. Till not available or doing any trials in UK at moment. So i know you would have to pay private not sure how much it is either. Playing on my mind so thought i would ask you guys if possible to do.

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snow white's picture
Replies 45
Last reply 3/3/2017 - 9:31pm

It is with a very heavy heart that I have to relay this news.  Our dear friend and warrior Paul passed away on Friday 2/17/17.  I have been in touch with his daughter and she asked me to relay this news.  I am so very sad about this.  He gave me and my family so much hope, he was fighting so hard just to get back to LA to start the trial.  I had been keeping in touch with him via text after I met him in person at The Angeles Clinic. Such a great guy and will surely be missed, especially him humor!  His daughter has asked me to let all know that his services will be on Saturday at Pine Lake covenant church in Sammamish.  If you need more details I am happy to text her.  I know his family was a great support to him and will miss him dearly.  I will miss his posts on here so much.

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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TamSchubert's picture
Replies 13
Last reply 3/3/2017 - 7:18pm

Hey all,

My husband was recently diagnosed with Stage IIIB, and may now be stage 4.

His primary tumor was on his *left* mid-upper back & only 0.82mm in depth, non-ulcerated. Despite the shallowness, it spread to a sentinel node on the *right* side (2.2mm tumor in node, still fully encapsulated). Two left nodes were tested, and were negative. A full axillary nodal dissection was performed on the right side, and all nodes from that surgery were negative (in total, one positive node (the right sentinel) & 28 negative nodes)

His first PET/CT scan showed two nodules on his *left* lung, 2mm & 9mm. Our oncologist told us they weren't metabolically active & didnt take up the FDG tracer. He booked us for a follow up CT in two months, and said the nodules were too small for a needle biopsy.

He did NOT say that he is stage 4 yet, and seemed relatively nonchalant about those two spots on the left lung. No VATS procedure was offered, just a follow up CT.

We opted out of Interferon in November because he only had one positive lymph node & a relatively shallow primary tumor with no ulceration. We instead chose the "wait & see" route - mainly because the risk/benefit wasn't worth it (I was 5 months pregnant at time of diagnosis, and we wanted him to maintain his quality of life while we prepared for our first little one.)

However, now that these lungs spots have been seen, I don't know if the "wait & see" choice is the best anymore. Our oncologist didnt seemed too worried about them & didn't mention starting interferon or any other therapy yet, but I'm beside myself with worry.

Has anyone else had benign lesions on their first PET/CT like this?

My husband does work around a lot of things that could cause lung issues, and has a history of lung infections including a bad cause of walking pneumonia that resulted in a large peel in his right lung - but it is the left lung showing these nodules. We were told it is fairly likely that these are benign... but we really don't KNOW. I am now 9 months pregnant & beside myself with worry. We contacted MD Anderson & have had his scans and reports sent - we are just waiting to be scheduled in there.

I want to push for a VATS procedure, but it wasn't even mentioned as an option to us at our last visit. I only learned about it after we left & I began researching independently.

Anybody with experience in this department?? I cannot stop worrying about these lung spots.

 

Tam S

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CindyCo's picture
Replies 4
Last reply 3/3/2017 - 4:35pm
Replies by: CindyCo, debwray

Unfortunately, we were not able to get the second dose of Keytruda as planned.  We went to UCLA, but my mom's blood test showed high liver enzymes.  She is getting a full body CT scan today instead to see what is going on.  Dr. Ribas doesn't think it is hepatitis again (like it was after one dose of the ipilumumab/nivolumab), because alkaline phosphate also went up.  So now we are worried about mets, as usual.  Not sure what else could be causing the liver enzyme spike.... infection?

We hoping that we'll be able to continue with Keytruda, since it seems to work well for others

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youngann's picture
Replies 9
Last reply 3/3/2017 - 1:28pm

I was diagnosed stage 3 in May 2016 and had a brain MRI before my CLND. When I went to see my onc last week, I asked if I should have a repeat MRI and she said that she doesn't recommend them unless a patient is showing symptoms.

After thinking about it, I wondered if it wouldn't be better to have them regularly before there are any symptoms...what are your thoughts on this? Are brain MRIs normally recommended on a regular basis for stage 3, or is it normal to wait until symptoms appear?

I have been having regular chest, abdomen & pelvis CT scans.

Thanks,

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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45_dps's picture
Replies 2
Last reply 3/2/2017 - 12:15pm
Replies by: miaka618, Anonymous

Hi,

I just wanted to ask if anyone else can share their recovery experience after a complete lymph node dissection of a full side of their neck?

It has been a little over 2 weeks since mine (44 lymph nodes, some skeletal muscle, and a plum-sized submandibular gland). I start physical therapy tomorrow for my left shoulder and neck. I will also start seeing a speech therapist but that hasn't been setup yet (probably next week).

Here is my big question: The left side of my tongue is limp (when I curl my tongue only the right side curls, my tongue can touch my back teeth on the right side but only as far back as the canine tooth on my left side). Also, my left lower lip is limp but this is very subtle because the middle and edge of the lip are responding normally. Are these effects temporary?

Reading about nerve issues regarding the tongue it sounds like nerves do heal themselves quite well. So hopefully it is just a matter of giving my tongue and lip some more time to heal.

But any advice of nerve healing and/or physical therapy exercises for the neck would be greatly appreciated.

I start on Ipi in a week, so in many ways the nerve healing and physical therapy are good for me to focus on instead of worrying too much regarding Ipi.

Thanks!

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