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.

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Hi all, I have posted a few times on this board about my father and every time you give the most wonderful information and support. My dad was hospitalized about three weeks ago due to extreme fatigue and lack of appetite. On a ct scan they saw a mass in the abdomen as well as several spots in the abdomen and one on the lungs. They are assuming it is melanoma, as he had stage 1 three years ago and was considered cured. I am quickly finding out what a sneaky bastard mm is. He was discharged from the hospital yesterday and is much better in terms of strength and vitality and appetite. Though he need s a walker. A month ago he was perfectly fit ! He still does not have a diagnosis as they did two unsuccessful biopsies and were only able to get a sample the other day. Now we wait. 

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Jango's picture
Replies 2
Last reply 10/29/2016 - 5:22pm
Replies by: Jango, debwray

Hi all, I have posted a few times on this board about my father and every time you give the most wonderful information and support. My dad was hospitalized about three weeks ago due to extreme fatigue and lack of appetite. On a ct scan they saw a mass in the abdomen as well as several spots in the abdomen and one on the lungs. They are assuming it is melanoma, as he had stage 1 three years ago and was considered cured. I am quickly finding out what a sneaky bastard mm is. He was discharged from the hospital yesterday and is much better in terms of strength and vitality and appetite. Though he need s a walker. A month ago he was perfectly fit ! He still does not have a diagnosis as they did two unsuccessful biopsies and were only able to get a sample the other day. Now we wait. 

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Hi all, I have posted a few times on this board about my father and every time you give the most wonderful information and support. My dad was hospitalized about three weeks ago due to extreme fatigue and lack of appetite. On a ct scan they saw a mass in the abdomen as well as several spots in the abdomen and one on the lungs. They are assuming it is melanoma, as he had stage 1 three years ago and was considered cured. I am quickly finding out what a sneaky bastard mm is. He was discharged from the hospital yesterday and is much better in terms of strength and vitality and appetite. Though he need s a walker. A month ago he was perfectly fit ! He still does not have a diagnosis as they did two unsuccessful biopsies and were only able to get a sample the other day. Now we wait. 

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SOLE's picture
Replies 5
Last reply 10/29/2016 - 2:56pm

Can the former prevent the latter?

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/29/2016 - 5:43pm

I am a 43 year old female from Indiana who is new to this website.  I was diagnosed with melanoma on the right side of my neck near my clavicle in May 2008.  The melanoma was surgically removed in June 2008.  Since the melanoma was in very early stages, all margins were clear, and no lymph nodes were affected, it was determined by my doctor that no chemo or radiation was needed.  I have been faithful about going to my dermatologist to have yearly full body checks, blood work, and chest x-ray.  My last exam and tests were in July of this year, and once again, I was given a clean bill of health.

About a month ago, I started having some swelling on the left side of my neck and pain in the clavicle.  I went to my GP who recommended I have a chest x-ray and blood work done (even though I had just had these tests done 4 months ago).  I went for both tests and results were good.  She then scheduled me for an sonogram on the left side of my neck and chest.  Results showed no abnormalities.  My doctor wanted to run one more test so last Monday I went for a neck CT with contrast (my doctor wanted both the neck and chest scanned, but my insurance would only approve the neck).  I got the results yesterday.  Once again, nothing was found on the left side of the neck or chest where I'm having pain and swelling, but the CT scan did show 2 noncalcified pulmonary nodules (6mm and 7mm) on the top apex of my RIGHT lung.  I am now scheduled for another CT scan this coming Wed. Nov. 2 on the neck and chest.  My doctor said she is not overly concerned because 90% of lung nodules are benign, not to mention my blood work was good, but with my history of melanoma, she wants to investigate this further. 

Needless to say, I am very worried.  My paternal grandfather and my dad both died of lung cancer.  Last month, I quit smoking after 20 years (cold turkey), but now am worried it might be too late.  I've talked to my husband, mom, sister, and best friend, and they have all been very loving, encouraging, and supportive, but I just can't stop thinking this isn't going to turn out good. 

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jennis3b's picture
Replies 6
Last reply 10/29/2016 - 10:15am
Replies by: jennis3b, Tim--MRF, MoiraM, Anonymous

Hi! My name is Jennifer. I am a 32 year old woman. Married to my husband Joe. We have an 8 year old.

I went to the Brevard Skin and Cancer Center 9/9/2016 for a freckle that darkened to black and turned into a mole that was growing on my right forearm. I saw the ARNP-C who thought maybe it was a pyogenic granuloma. The mole was removed as well as other raised spots around it and sent to pathology. On 9/19/2016 the office called me and informed me that I had nodular malignant melanoma. Clarks level at least 4, at least 1.8 mm in depth. Staged at pT2a, pNX, pM N/A. 9/23/2016 I met with my surgeon Mark Talbert (EXCELLENT) from Health First (Holmes Regional Medical Center). On 10/17/2016 At HRMC I had lymphatic mapping followed by a wide excision of the primary tumor and a sentinel node biopsy. On 10/18/2016 my surgeon informed me that one of my lymph nodes came back positive for metastatic melanoma. The lymph node was 1.2 cm in greatest dimension. I was Staged as IIIB- T2a, N1b, Mx. On Monday 10/24/216 I was back at HRMC for a axillary dissection to remove the lymph nodes under my right arm pit. On 10/25/2016 my surgeon informed me that of the 14 lymphnodes removed none of them were positive for melanoma. I have been referred to Dr. McClure, oncologist. I am waiting for my first appointment.

Do you know what will come next as far as treatment options? Do you have preferences on treatment and why? Where are the best (safe) places to research my options?

Thank you in advance!

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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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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