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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MaPerny's picture
Replies 7
Last reply 1/30/2017 - 7:46am

Hi, 

I have been trying to post this for a while, we have a tough situation to swallow and for nearly 4 years we have focussed on Hope and the next solution that is round the corner.  I recommend that approach for everyone on this board and for the newly diagnosed there are lots of new, exciting options that will bring up the survival and complete cure %'s I am completely convinced.

We saw Dr Glitza as recommended to discuss the possible LMD treatment for Juan.  She was excellent, explained everything and the expected prognosis without treatment.  After going through multiple hospital stays, surgeries, radiation, immunotherapy, chemo, TIL...  Juan has decided that he wants to spend as much quality time with me and our 11-year-old son as he can while he is feeling well.  This means that he will have no more treatment except palliative pain management.  They have put him on steroids finally and the difference in pain and energy levels has been wonderful.  He is feeling better than he has been for a year!

He wants to go to the mountains so on Feb 7th we will be off to Steamboat, we haven't been able to go for three years and we love going there.  Juan won't ski of course but will be enjoying the beautiful mountains and fresh air, a million miles away from the hospital.  Eduardo can't wait to ski again.

Juan is so strong and has a wonderful attitude about it all, he wants to be in control and to enjoy his time with dignity.  That helps me hold it together for the sake of both of them although my heart is breaking.  

Sending love, hope, prayers and thanks to everyone.  

Maria

 

 

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Tink88's picture
Replies 4
Last reply 1/28/2017 - 6:07pm
Replies by: Tink88, 45_dps, jennunicorn

I went to the Dr on Monday for a skin exam, and one of my moles are melanoma 2mm. I am going to UCSF early next month for further testing. Waiting is a bitch, a scary bitch. I appreciate these site

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katieherwig's picture
Replies 3
Last reply 1/31/2017 - 2:11am

I'm being treated for Stage 4. I'm 2 1/2 years in and on my 32nd dose of keytruda. The last few weeks I've had swelling in my feet, legs, and arms. Has anyone else experienced this? My doctors can't find why. All my labs are great. I need a solution to stop the swelling if possible!

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casagrayson's picture
Replies 9
Last reply 2/1/2017 - 11:12am

I know that no one can diagnose a lesion on the internet.  I know the only way to determine if it is a serious problem is to have a biopsy.  However, I'm going to ask anyway.  My husband has had multiple primaries, none of which required SNL.  About a month ago, he had a nodule pop up.  It has continued to grow, and appears ulcerated.  

How common would it be for a person to have had superficial spreading melanomas but then have an amenolotic nodular melanoma?  Or does a sub-q ever present in this manner?  Maybe I'm being too paranoid, and this is nothing but a benign lesion or a squamous.  My husband has an appointment with the dermatologist at the end of February and doesn't want to reschedule for earlier due to a hectic travel schedule.  Based on the appearance of this thing, should I insist he get to the doctor sooner than later?

http://s102.photobucket.com/user/casagrayson/media/IMG_2717.jpg.html

Strength and Courage,

Susan

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AimeeB's picture
Replies 6
Last reply 1/29/2017 - 9:43pm
Replies by: AimeeB, Charlie S

Hi there all, I am new here. I have an area on my face/scalp/hairline. I am not sure when it started exactly, but have been aware of it for about a year. It has been slowly growing, but I have been successful in ignoring it, lol. I only really notice it when I blow dry my hair. Finally, I realized I needed to have it examined. I had a biopsy on Monday. Normally the doc will say "I will call you tomorrow (in 2 days, etc) to give you the results. This time he said, let's set up a time for you to come in and talk about the results. Ugh! We have online chart system, but they only put normal results on, until they speak to you. Of course, I have been stalking that site, and my results are not there. I am scared, as my father had melenoma on the top of his bald head 3 years ago and now has a big crater. I wish I knew how to post a picture. I also wish I knew either way, since the doctor didn't give me any non-cancerous diagnosis.

Thanks for listening to me. Just scared.

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/27/2017 - 6:22pm
Replies by: Mark_DC, Anonymous, Polymath, Aloha14, cancersnewnormal

Any help with this would be appreciated. I have spinal problems at multiple levels.

Neck especially c4 /c5. Large prolapsed disc at T10/11 and T12 also multiple problems lumbar region including L5/S1 . THis has been imaged by MRI at intervals and has remained stable.for well over a year.

Just had CT scan results-as part of ipi nivo treatment. Examiner is indicating melanoma spread  ( CT with contrast ) to T10/11, T12 and L5/ S1. THe last spinal MRI was May 2016. The previous CT with contrast was late September 2016.

Is there any chance that my disogenic disease has been mis- identified as melanoma ?

Which is the better imaging technique for spine ?

Is melanoma more likely to spread to areasof the spine which already have issues ?

Struggling to take on board the latest- with new disease identified in skull, lungs, groin, pelvis and spine

Probably clutching at straws...but thought I would ask anyway.

 

 

 

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Hello everyone,

On Monday I went to a dermatologist for the first time in my life. I'm a 29 y/o male, and I just learned about the ABCDEs of skin cancer two days earlier. Unfortunately I had a mole just north of my navel which seems to have met all 5 of the criteria:

Here's another picture showing the size better (the black ring is 6mm):

So you can see that it is about 10mm in length, bi-colored, and misshapen. Furthermore I found a photo of myself from 10 years ago, and the mole didn't exist back then. A photo from 4 years ago shows it, but it did seem a little smaller at the time.

Luckily I was able to get a same day appointment with the derm on Monday. After seeing the spot on my stomach, he let slip "Oh we definitely need to have that looked at" -- not the most comforting thing to hear. He also found a spot on my back shoulder which he was less concerned about, but he took a shave biopsy of both. I'm currently waiting on the results =/

I honestly wasn't very worried until the next morning when my wife was helping me change the bandages on my biopsy sites. The scar on my back looked pink/white, pretty much how I would expect it to:

However the scar on my stomach, the big ugly one, looked a lot darker. It made me wonder just how deep this thing really goes:

I know I have to wait for the biopsy results to come back to know anything definitively, but I'm very curious to hear your opinions about the scar on my stomach. Does the dark color (where my skin was removed) indicate deep roots? If so, do lots of moles tend to go deep, or is it more so a trait of cancerous moles? Did any of your biopsy scars look like that one, and if so what was the eventual diagnosis? Any other general thoughts?

I know I'm supposed to be taking my mind off of it while I wait, but I would much rather pre-process as much of this as possible. You guys seem like a very kind and welcoming crowd - I hope you don't mind my asking those questions. Thank you very much for your time.

Derek

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David McCaw's picture
Replies 7
Last reply 1/27/2017 - 6:12pm
Replies by: David McCaw, Anonymous, Bubbles

I moved from stage 3c with unresectable melanoma in transits to stage 4 with  mets in lungs and liver. I will be receiving combo #4 today nivo / ipi  Unfortunately my immune is not responding according to med onc after 8 weeks and 3 combos with CT scan.  The plans 1) Army 1 - continue with immunatherapy for today, 3 nivo wks, 5 wks nivo, CT scan at 6 weeks , if progression 2)  Different Army with Targeted therapy - Cotellic & Zelboraf 3) Investigating Adoptive T-cell Therapy at Princess Margaret hospital.  Any other suggestions. 

also note,my braf mutation is k601n.  I live in Ottawa, Canadaand will be seeing  Ed Williams today.

Thanks,

David

 

David, ( Stage 4, mets lung and liver)

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WallyE's picture
Replies 2
Last reply 1/27/2017 - 8:49pm
Replies by: Mark_DC, debwray

I have just received the following. Can anyone tell me how serious this is please? I live in fear.

Macroscopy

Well circumscribed lobulated creamy white extensively necrotic mass measuring 70x57x40mm (64 grams)

Microscopy

Representative sections show a very pleomorphic high-grade malignant epithelioid/spindle cell tumour with evidence of extensive tumour necrosis. On the periphery of the tumour, there is tissue resembling compressed atrophic pancreas.

In some areas the tumour is bordered by non-neoplastic soft tissue and in other areas the tumour extends to the histlogical perimeter.

Immunohistochemistry

1. S-100 - strongly possitive

2. Mel A - very strongdiffuse membrane and cytoplasmic possitivity

3. HMB45 - strong diffuse positivity

4. MITF-1 - strongly possitive

5. Ki-67 - 50%

Comment

The above immunohistochemical profile would support the morphologic and clinical features suggesting those of Metastatic Malignant Melanoma

In view of the above findings, the BRAF mutation analysis will be performed as this has prognostic and therepeutic implications (BRAF request no 4007/G)

ICD10 coding C77.9

Diagnosis

Metastatic Malignant Melanoma.

 

One day at a time.

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/28/2017 - 6:04pm

My husband was first diagnosed in 2010 with melanoma in his right leg under a mole on his calf.  Now, going on his 7th year battleing this disease, he is at a stage IV.  Over the past he has gone through 5 or 6 surgeries, 3 brain radiations, chemo, numerous immunotherapy and most recently Opdivo immunotherapy.  The immunotherapy has been the best treatment thus far, and his recent PET and MRI scans have come back clear with the exception of a very large ( the size of two soft-balls) tumor in his upper leg/ groin area which has continued to grow.  His oncologist and the surgeon have said that it is inoperable due to its placement on top of the main artery in his leg. . Desparate to find something that would shrink the tumor that continues to grow, we asked to be approved for T-Vec.

About two months ago he was approved to try T-Vec, which is 4 vaccinations directly into the tumor per session.  After the 5th session of T-Vec, the skin broke open on the tumor and the necrotic tissue is litterally pushing out of his leg and leaking fluid out of the wound.  Not knowing this would happen with a trial medication, we need to change his bandage 3 to 4 times a day which has made the situation much worse. We immediately stopped the T-Vec after his wound got an infection and he spent 6 days in the hospital.

MY QUESTION: Is there anyone out there who has had oncology surgery near a main artery?  I have a hard time believing that a team of surgeons including vascular surgeons could not remove this tumor.  Any advice out there?  HELP!

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_Paul_'s picture
Replies 27
Last reply 1/30/2017 - 10:54am

I have been having problems trying to post an update. So I will it in chunks.

To exist is beyond fantastic.

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dori's picture
Replies 5
Last reply 2/8/2017 - 6:25pm

Hi everyone,

My best friend was just diagnosed with melanona. I don't know all the details but she is devasted. She is having an assessment and consultaiton tomorrow with a doctor.

I have offered to help and do research on options for the best treatment, best doctors that specialize in melanoma.

We are from Toronto Canada but want to know about any special clinics in the US as well. I heard the Mayo clinic is great?

I would appreciate any feedback as this would truly help my friend.

 

Thank-you

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Hikeratheart's picture
Replies 3
Last reply 1/27/2017 - 1:10pm

Hi everyone,

This forum has given me so much information and comfort since my melanoma diagnosis in May, 2015.

Brief history:
Surgery on July 1, 2015 to remove malignant melanoma from my right arm. 4.5 mm, no lymph involvement, non-invasive
.4 mm melanoma removed from my back. Two primaries.
Stage IIb
Since my diagnosis, I've had skin checks and scans every 6 months, showing NED. The August, 2016 scan showed a tiny pulmonary embolism in my left lung. I have been treated with Delphine( blood thinner) since then.  My next scan is Feb, 2017.  Praying it is gone, and I can stop the blood thinner.

About two weeks ago I felt a small lump/bump on my left groin area, and another  lump a bit larger, on my outer left thigh. My dermatologist examined and given my history, suggested that both be biopsied. She has referred me to a plastic surgeon for consult on the biopsy, which is set for Tuesday, Jan 31st.

I am hoping it's all nothing, but preparing just in case. Since I love and trust this board, input about my situation is appreciated.

Thank you !   Kathy

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Aloha14's picture
Replies 3
Last reply 1/27/2017 - 1:00pm

During December I had IV's put in 4 different times in my left hand/arm. Plus, some techinicians that didn't know how to do an IV and poked my vein in several different places on my arm. Now I notice there's 2 places where close to the surface veins feel hard. It doesn't hurt but I'm wondering if this is something my doctor should look at.?

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