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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SamS's picture
Replies 10
Last reply 5/17/2018 - 10:31pm

Not BRAF, KIT or KRAS.. my recent met tested as  NRAS. Currently all mets have been in my leg, PET showed no evidence of ‘avid lymphadenopathy or metastatic disease’. Just recovering from massive LWE and graft, and handed my results. Freaking out a bit as the report comments NRAS is more aggressive and a worse prognosis. Not offered any treatment besides surgery. Anything I should know ? I’m in New Zealand so things are handled differently here. So I thought I’d ask if anyone has any first hand experience relevant to this. Thanks for your help ! 

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/20/2018 - 10:38am

Has anyone else been diagnosed with Type 1 diabetes after starting Opdivo treatment?  I was after 3 treatments.  Boom there it was!  Good news is that I have been in remission since Mar 2017!

BK

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MelanomaMike's picture
Replies 7
Last reply 5/17/2018 - 11:37pm

Hi Family, boy this stuff {Opdivo/Yervoy} better be working cuz i feel like poop, like Flu like symptoms, mild nausea that never leads to vomiting {not yet anyways}, achy body, my head pounds when i get up to quickly but then goes away, its just like the flu...Im drinking plenty of water to stay hydrated & my hunger is ok, i get full fairly quicker then normal but thats ok, i wrap it up and reheat for later...I just wanted to share whats going on with me, im off work for a bit {thank god} but may go in tommorrow if i feel better. Ive noticed i feel worse at night....take care ya'all, and if yer feeling the same, well, im right with ya, this sucks but we have to warrior through!...Love ya guys, Mike...

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guynamedbilly's picture
Replies 3
Last reply 5/17/2018 - 2:55pm

I've pretty much only been putting on sunscreen when I'm going to be outside for a significant time, or I'm going to be in direct sunlight for more than a couple of minutes.

I don't do it when just walking to my car from my house, but with the hot sun shining down now I wonder if I should just do it everyday.

What do the rest of you do?

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tedtell1's picture
Replies 5
Last reply 5/17/2018 - 6:51pm
Replies by: maryb-z, marta010

Friends;

A friend who has been undergoing chemo and immunotherapy for another type of cancer said she had been told that doing a double dose of claritin (not d) can help with body aches associated with therapy. You take the doses for a couple days before then a couple days after. She has not tried it yet. Has anyone tried it and did it work? My body aches after infusions are getting really bad...especially my hips and thighs. Would love to find something that could help.

Blessings to all of you warriors,

Ted

Ted

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Anna.helena.gray's picture
Replies 6
Last reply 5/17/2018 - 11:13am

Hi everyone! I'm having difficulty navigating the site so I hope I made it to the right place! I'm up nursing my 2 month old.
I guess I'm posting here because they all the diagnosis and scans and surgery I feel like I've lost touch with the seriousness of a this. The doctors remain positive and that is their job, my family remains uneducated. The shock of the whole thing has worn off and I feel like I'm walking around convincing ppl that this is serious. And maybe it's with off on me... I realize the statistics have changed over the years and aren't valid..
I think I just need to be told by people who are in this that my fears are valid... I feel like I'm being meladramatic with my fear...
I think I just feel alone sometimes and sometimes I feel like I'm making a mountain of of a mole hill. Pun intended.
Oh I'm a mom of 2, son is 2, daughter is 2 months... Daughter was born prematurely to allow my surgery to happen. Stage 3b melanoma.

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Tset's picture
Replies 2
Last reply 5/15/2018 - 12:55pm
Replies by: Tset, Janner

Hi all. I’m in a bit of dilemma on what treatment to do for this local recurrence. The path report said local recurrence of melanoma in situ which I guess is good if it’s right. Duke is where I’m going for this and they have got my original slides of my previous lentigo maligna MIS biopsy and WLEas well as this recent recurrence biopsy and they are having their dermopathologists come up with their own report to make sure nothing was missed and it matches. The dr seemed to think it would match up but we shall see. She said being that it is still considered insitu that it would not have spread but being in rather freaked out about a few larger than normal lymph nodes in my armpit she is sending me for an ultrasound for my piece of mind. She said that would highly unlikely be why those were a little enlarged. Anyway, her recommendation was to excise with a bit wider margins than last time and get clear margins. She said if the path is correct and it is still considered in situ that she wouldn’t be opposed at me doing MOHS surgery with this but if it came back a thin melanoma versus MIS then she wouldn’t recommend. I had a consult with supposedly the best MOHS surgeon in this area and he said if it were him he would do MOHS. He said that some melanoma like my lentigo maligna has what he calls tentacles that spread out beyond the mole and said it’s like an octopus. He said sometimes those tentacles of cells are further out than what a standard wide local excision would get and can leave some behind which is what happened in my case. He said new studies are showing it to be better than a wide local excision. He said he would do a modified MOHS where he basically does kind of like a wide local excision and does MOHS on all the tissue and surrounding tissue. He says a pathologist is there during surgery and that they stain the skin with some type of stain that lights up melanoma cells and they remove them. He says if they keep seeing cells beyond the margins they keep going until it’s clear. Sounds good right? But from what I’ve read it’s mainly for the other types of skin cancers. He says he does MOHS on melanomas every day. Just want to make the right decision being this is a recurrence because if any gets left behind next time I may not be so lucky and it could end up invasive. What’s everyone’s thoughts on this and has anyone ever expierenced a true local recurrence in their scar? Thanks so much, TSET

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mbrrna's picture
Replies 6
Last reply 5/15/2018 - 2:31pm
Replies by: mbrrna, Linda5, Anonymous

So, got mom's pathology report, following WLE of her right heel for ALM (2cm margins, with skin graft) in February.  (I've also listed the PET scan results below - she has nodal involvement - no biopsy/lymph surgery though.)  Would appreciate any thoughts on the path report - she's 84, staged locally advanced 3C.

She had her third dose of Keytruda today, but there is concern that the tumour has come back in the original site as one section of her heel is not healing after three months, and appears ulcerated. Met with the oncologist who wants to see what growth there is over the next three weeks.  What concerned me is that the Dr said there are no other options to Keytruda, so if it's not working that's basically it - other than "studies". 

Is Keytruda the only currently approved treatment in Canada?  I've read here about other treatments like opdivo, ipi/nivo, taf/mek etc and understand the side effects can be difficult. She's tolerating the Keytruda well. Any thoughts on what I should ask for if they decide the tumour is back and Keytruda isn't working? Two small satellites appeared then disappeared within a couple of weeks, so I'm hoping that's a good sign. They won't redo the CT scan for another two months. Isn't it too soon to decide whether it's working, even if the tumour is growing? She is Braf positive. Thank you.

DIAGNOSIS
Part A - Skin excision right calcaneous:
- Invasive melanoma
- Anatomical level: 5
- Vertical thickness: approximately 7.0 mm
- Ulcerated
- Mitotic rate: 7/mm. squared
- Perineural and lymphovascular space invasion: present
- Completely excised

Specimen
Procedure: Excision Tumour
Tumour Site: Skin of lower limb and hip -
Calcaneous
Tumour Size: 45.0 Millimeters (mm)
Histologic Type: Melanoma, not otherwise classified
Tumour Extent
Macroscopic Satellite Nodule(s): Not identified
Ulceration: Present
Vertical Height (mm): 7.0 Millimeters (mm)
Mitotic Rate: 7 mitoses / mm2

Accessory Findings
Microsatellite(s): Not identified
Lymph-Vascular Invasion: Present
Neurotropism: Present
Tumour Regression: Not identified
Peripheral Margins: Uninvolved by invasive melanoma
Distance of Invasive Melanoma from Closest Peripheral
Margin: Cannot be determined - .
Status of Melanoma In Situ at Peripheral Margins:
Uninvolved by melanoma in situ
Distance of Melanoma In Situ From Closest Peripheral
Margin: Cannot be determined - .
Deep Margin: Uninvolved by invasive melanoma
Distance of Invasive Melanoma from Deep Margin: 4.8
Millimeters (mm)
Regional Lymph Nodes: No lymph nodes submitted or found
Pathologic Stage Classification (pTNM, AJCC 8th Edition)
Primary Tumour (pT): pT4b
Regional Lymph Nodes (pN): pNX

PET SCAN

FDG avid lymph nodes in right inguinal region and along right external iliac chain. Largest node is right inguinal measuring 28 x 18 mm, SUV max 9.6. Additionally there is an FDG avid lymph node right ileocolic distribution measuring 17 x 13 mm, SUV max 6.3. FDG avid node posterior to the inferior vena cava, SUV max 3.5. This node is small, measuring 5 x 8 mm on CT.

 

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HeidiZ's picture
Replies 5
Last reply 5/15/2018 - 8:46pm

Hi All, I feel like I know everyone because I've been coming to this site for good information for awhile but this is the first time posting. I'll try to summarize as much as I can because it's a long story.  2013 a new co worker has a young husband diagnosed with stage 3 melanoma.  Shortly after that he advanced to stage IV and then July 2014 my co workers husband succumbs from the melanoma.  Ippi didn't work for him and by the time he looked into trials it was too late for him.  September 2014 I find a mole on my scalp not the derm because he never checked my scalp during full body checks so I show it to him, tell him how concerned I am because my friends husband just died etc.  derm tells me the mole looks fine and doesn't need to be removed. He said they don't take things off just because it can become something and also says you know what the chances are that you would have melanoma?? Well 7 months later guess what, I ask my daughter to take a look it again and now it's all black. Go back and get it removed punch biopsy size was 2mm, mitotic rate 3. Schedule my surgery end of May, two nodes from neck removed and one node had a protein that melanoma cell would make and other one was clear. So stage 3a now going for 3 month follow ups including ultra sound of my neck basin to check nodes for melanoma plus going for scans and body checks. During one of these checks the technician finds nodes on my thyroid which turns out to be papillary thyroid cancer. Within a week of that diagnosis I find a lump in my neck which turns out to be melanoma. So now its November 2015, I have a complete lymph node dissection with 55 lymph nodes removed and my whole thyroid is also taken out. Now stage 3c melanoma. Still watching and waiting, February 2016, ct scan shows lesions all over my liver, spleen and in my neck and behind my ear you could see many black spots of cancer. Now stage IV.  Start ippi/nivo March 2016, got through all four doses and then continued on with 16 does of keytruda thereafter up until August 2016. Things got smaller and things seem to be stable for the most part  but ct scan still showed lesions on liver.  I started to get a lot of side effects so Dr order my first ct/pet scan in December 2017 and it showed 3 nodes lighting up in my neck so we weren't sure if it could be melanoma or possible thyroid cancer spread. Well glad to report my latest ct/pet scan last month showed no uptake, nothing lit up and the nodules got smaller!! Finally some really good news!  So it's beeen a crazy 3 years but I'm hoping things will only continue to get better and I will be able to call myself a cancer survivor at some point. For now I can take breather for a bit and then I go for my scans again in August. I also have to be vigilant on checking my scars for any abnormalities too. Just keep fighting everyone. Much love to you all, HeidiZ

 

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https://ecancer.org/news/13945-shooting-the-achilles-heel-of-drug-resist...

 

Interesting post about combatting resistance to braf treatment. If the link does not work (as my tech skills are sketchy) I found it on the ecancer website.

 

Mary

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VinceMart's picture
Replies 8
Last reply 5/15/2018 - 10:28am

Just wondering if when you need to visit ER due to treatment side effects if you ask them to consult with your melanoma specialist or trust them to make the correct decisions?

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iskitwo's picture
Replies 6
Last reply 5/15/2018 - 4:44pm

Well the fight is on!! Thanks to all those that post and answer so many questions for all of us. This is a crazy scary journey we are on. I am a mother of 2 little ones and reading stories of you all continuing to work and raise your babies are very inspiring and give me so much hope! I started Nivo treatments twice a month (insurance wouldn't approve the once a month) Praying for great results!! 

Missy

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stevek1959x's picture
Replies 10
Last reply 5/18/2018 - 9:10am

So the big day is this Wednesday for starting Opdivo as an adjuvant treatment.  My onco said 12 monthly treatments.  Whoa!!!  Thanks to the folks on this board I said maybe I should learn to walk before I run so I suggested starting with the 2 week treatment.  I did not get any pushback at all but I was surprised they were moving new patients to the 4 week treatment right away.  Meanwhile, I still have my drain in from the lymph node dissection (3 weeks).  My onco said no problem that the treatment could start with the drain in.  They want me to see a PT/Lymphedema specialist but I thought I should hold off until this drain is gone - right?  One of the nurses said it was almost a for sure event that I would be on thyroid  medication as a result of the Opdivo.  Is this what everyone is experiencing. 

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Raco's picture
Replies 2
Last reply 5/15/2018 - 12:39pm
Replies by: Raco, dessie

My last appointment which was on 5/3/18 and I told my Oncologyst that I was having a little shortness of breath when I was doing light chores.  He suggested I get an X-Ray which I did last week. 

Had my chest e-ray end of last week because of shortness of breath. Results today 5/14 which says

Impression: No evidence for acute cardiopulmonary process.

I go back for my 4th Opdivo treatment 5/17/18 and im sure the Dr will go over the results.

Question: has anyone else experienced shortness of breath and if so, what was causing it as it seems like my results were clear.

your input would be appreciated.

RACO

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Jlpendley's picture
Replies 4
Last reply 5/16/2018 - 12:14am

My husband had a mole removed from his back that grew quickly I think it was bleeding and scabby. I am not sure if it was an existing mole he had for years or a new mole. Its seemed to happen so quickly.  It came back as melanoma.  I instantly went on the internet to look up information and now I'm paralyzed with fear.  He has an appointment with the sergeon on Wednesday and his dermotologist said he may remove more of the area around it.  That is all the information he was given except that he will have to go back to the dermotolgist for 3 month visits. I'm so afraid that the doctor on Wednesday is going to say he is stage 4 and only has about 6 months to live, like some of the stories i have read on the internet. 

Jennifer pendley

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