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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SOLE's picture
Replies 15
Last reply 10/31/2016 - 5:33pm

I am asking for your guidance please.

And also, for all of you who might read this and think: "Sole is so negative man, he just lets melanoma poison his life and he surely wants to die or something", please dont comment. For now.

I just came back from yet another depressing meeting with onco surgeon and hemaro oncologist. Suffice it to say that except pembro in Quebec and the braf and mek inhibitors and maybe two ro three more (less effective?) drugs, there wont be much more medicine available if/when I progress to stage 4.

Apparently, the nivo/ipi combo was just approved by Health Canada yesterday. But it is up to every province to administer their health funds and in Quebec, we will not ever be able to afford such a thing. It is simply too expensive for our society to spend a million bucks on a patient. I'm afraid my sand box has suddenly gotten very small.

So here is my question to you canadian friends (Ed are you there?): adjuvant therapy for stage 3 aside, what is available in your part of the country for stage 4? Do you have access to ipi? We'll have to see which province agrees to reimburse the combo but I am faced, yet again with more difficult choices.

As for my decision about interferon or c'inical trials and therefore CLND, it will depend if my low aggregate patelet condition can get through or not with the two administrators of those trials.

I will find out sometime soon next week I presume

If there is a richer province, I might have to consider moving if I can and leave all behind me if/when I progress.

On the other hand, some of you have survived despite all the new drugs available today. But I feel very helpless at the moment, contemplating the possibility of not being able to possibly survive this.

My apologies to everyone who gets offended by my attitude. It is not my intention. My melanoma picture has just drastically changed.

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/29/2016 - 8:04pm

Did your surgeon remove all nodes that lit up during the lymph node mapping prior to surgery? I had my mapping done just before surgery and out of the 5 that lit if he only took 2....I'm having a hard time understanding why he wouldn't have just taken all 5?? 

 

 

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Anonymous's picture
Anonymous
Replies 19
Last reply 11/1/2016 - 11:49pm

Hi everyone-  I want to apologize for my previous post. I replied on it too but wanted to make a new post in case people don't go back that far.  Thank you for your posts particularly Ed, momof4boys, starts, debwray, snow white, bubbles...I took them to heart. 

I really need this online community.  Maybe I needed my little meltdown, too.  Thank you for reaching out to me and supporting me through it.  I have gotten so much and learned really everything I know about melanoma from the resources provided here.  You are all remarkable people. 

We are strangers walking along the same path, sharing our experiences, bumping into each other at times, pulling each other up when we fall.  Thanks for not leaving me laying there amongst the autumn leaves.

Much love and gratitude

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lindanat's picture
Replies 5
Last reply 10/29/2016 - 10:57am

I was recently diagnosed stage 4 unknown primary source.  Tumor removed right axilla 13cm and about 20 lymph nodes. Surgeon got 99% but had to leave some that was wrapped around artery in my arm.  Onc wants to do radiation but melanoma specialist wants to start keytruda right away and bypass radiation so that keytruda can work.  Any thoughts on radiation? I want to get going with keytruda. 

 

Thanks,

Linda

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SOLE's picture
Replies 18
Last reply 11/2/2016 - 9:18am
Replies by: SOLE, Kim K, Bubbles, Ed Williams, Anonymous, Johnjk04

A fairly recent (2014) German study on how to better predict survival than AJCC. More than 1000 patients followed so this is serious.

http://journals.plos.org/plosmedicine/article?id=10.1371%2Fjournal.pmed....

Has anyone already seen this?

Thoughts?

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totaroswest's picture
Replies 2
Last reply 10/29/2016 - 8:10pm
Replies by: stotesbery, landlover

My husband was diagnosed in August with brain metastases. He was given steroids to reduce the swelling.  He had a ct scan done that showed some nodes in lungs and a suspicious something on his kidney. After 2 months of recovery from brain surgery he had a pet scan done and nothing lit up. The nodes in lungs and kidney are still there but they did not light up. Also initially they could not tell if the brain tumor they removed was melanoma or something else. So they sent it to Cleveland Clinic and they finally determined it was melanoma.The doctor said that when you take steroids it changes the tumor so it is hard to tell what it is. What do you all make of this?

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imgonnabeatthis's picture
Replies 6
Last reply 10/26/2016 - 9:49pm

I had a bump removed from my back in September 2016.  Shortly after I was told it was malignent, 1.2 mm thick, not ulcerated.  Last week I had surgery to test a lymph node and remove the skin around the cancer.  The lynph node came back clean.  They said the edges of the removed skin were also clean, but the thickness was adjusted to just over 5 mm.  I am meeting with my surgeon and oncologist next week.  They advised no additional surgery is needed, but more treatment is suggested.  The doctor said we would discuss more at my appointment, but said High Dose Interferon was likely indicated.  Any information about this treatment, experiences, options or the road ahead of me would be greatly appreciated.  I can't even think straight right now and articles on the internet tend to put me into panic mode.

Thank you.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/27/2016 - 7:42am
Replies by: debwray, Janner

I recently had my wide excision and 1 cm margins where used based on the information the shave biopsy provided. However, the tumor thickness, based on pathology report, revealed the margins shoud have been 2 cm as the melanoma was greater than 2 mm in thickness but my surgeon says we have enough margin that is clear and further surgery is not necessary at this time.

Should I seek a second opinion? My surgery was done through the Navy and now I am wondering if I should seek a second opinion through a civilian location. I have tried to locate guidelines for what the standards are for clear margins are but I am unable to find exactly what I am looking for. If anyone of has any links available that provide information on safety margins for clearance please let share. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/26/2016 - 3:44pm

 My  60 year old brother was told last Friday he was terminal he was diagnosed 16 years ago with Uveal  melanoma at that time he had proton beam radiation and after five years of follow-ups said he was good to go!  On May 27, 2016 he went to see in that Tom at tryst as he was having vision and headache problems at that time they discovered a brain bleed fast forward to June 2016 they found a brain tumor which was removed after an MRI  they found he had a liver tumor in July he had half of his liver removed subsequent follow-up showed everything was good after 10 Madar and radiation as of last Friday he was told he was terminal a pet scan revealed lymph nodes in his groin and neck on fire they said no need to biopsy they know  they know it's melanoma they will put him back on 10 Madar today five days at 360 mg 28 days off and then five days does anyone know anything that can be done at this time his surgeon told him no clinical trials for his B ref negative help

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Anonymous's picture
Anonymous
Replies 9
Last reply 10/27/2016 - 10:10am

Hi ,

Am due to start ipi nivo on Monday- large number of diffuse liver mets.

Am still on high dose antibiotics Cipro and rifampicin following a severe infection in a previous surgical scar on the knee- post CLND on that leg. - although infection now seems to have gone .

Have started BioKult- pro biotic  to try to improve gut microbiome pretherapy.

My question is- are antibiotics likely to interfere with efficacy of ipi nivo combo ? Anyone been given advice re this from their oncologist ? 

Very keen to do what it might take to make the combo work...and reduce risk of side effects. Any hints or tips out there ?

Thanks in advance

 

 

 

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SOLE's picture
Replies 9
Last reply 10/27/2016 - 9:38am

When your lymph nodes starded appearing recently, how were they? Small, moderate, big? How so? All swollen I suspect? Firm, movable? Really obvious to palpation? Redness, could you see them clearly to the naked eye? Painful? Did you experience sharp pain that would last a few seconds and stop or else? Did they appear ovenight? A few days, two weeks?

I am asking all these questions to get a clear sense about how this happens.

Thank you Jenn. I dont mean to intrude in your personal life, I really want to understand.

And tell us how you become a complete responder to the combo! If I progress, I hope to be able to try that first and foremost (given that it is available in Canada...)

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Anonymous's picture
Anonymous
Replies 14
Last reply 11/16/2016 - 9:01pm
Replies by: _Paul_, John-Q, SOLE, Ed Williams, Geoff Linschoten, Anonymous, Janner

Hello I was diagnosed with stage 3 melanoma last year and now have shown a recurrence in the same leg and small spots on the liver. I have been looking into Rigvir for a while and many look at me as if I'm crazy. I have small children and need help and have heard back from their clinic but want to speak to people wgo have tried it. hope4cancer.com

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lmccann2016's picture
Replies 14
Last reply 11/24/2016 - 2:42pm
Replies by: John-Q, lmccann2016, imgonnabeatthis, SOLE, Anonymous

Recently diagnosed with melonoma. It has been removed however tumor was 4.7 mm mitosis was 7 not ulcerated and margin cleared by 0.3 mm. Seen oncologist and had fine needle as I have swollen node and shows cancer from pathology report. Nov 4th under going wide excision to clean up neck get more margin and SLN biospy removing all nodes on left side of neck where original melonoma detected. Well I am scared. My name is Lisa 3o have a family and now after this I have just stopped everything. Depressed anxiety you name it. My biggest fear is dying funny I work as a personal support worker.

They haven't given me a stage however I have been reading and if it's in nodes I am stage 3 I guess I'm confused some say two some say three from what I read. So far organs are OK no spread at this time.

Any advice would be greatly appreciated

Lisa McCann

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Karensway87's picture
Replies 3
Last reply 10/26/2016 - 8:13pm

I recently went to a chiropractor who noticed a wierd mole on my back. Two spots. One of them I knew was a tiny round mole from as long as I can remember. But, it has gotten bigger and it is very uneven. And ragged edges. I went to dermatologist and he did biopsy ( no results yet) but, what I am concerned with is him talking to the nurse while doing it saying 12 mm with irregular pigment. He then said to me , it's probably nothing but, then he handed me a brochure on skin cancer as I left. I have one week to wait for results & am nervous. I just knew someone who died from skin cancer. And a friend who had melanoma & had surgery. The other spot was also biopsied & he said 6 mm irregular pigment. Any insight? I don't know what any of this means. Thanks

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