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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Mtnears's picture
Replies 18
Last reply 9/2/2016 - 7:07pm
Replies by: Mtnears, jennunicorn, Ed Williams, Becky, Fen, Anonymous

First, this community has been great for getting information as we've been learning about the road ahead of us.  Now that we have more information I thought I would post it and get feedback from others!

My wife was recently diagnosed with Melanoma.  49 years old, no family history that we're aware of.  Developed a nodule under a blue mark on her skin that she had forever, decided to have it removed and we found out the results.  

Since then, she has had a PET scan which was negative as well as a WLE and sentinal node which the pathology from that was all negative as well (phew).  Tumor was on her bicep, from a report I have it says:

Tumor thickness 7mm, Clark's level V, Not ulcerated, histology unknown, no evidence of metastasis and Serum LDH elevated.  Classification T4 N0 M0 AJCC Stage IIB.

So, based on that info they want to proceed with Interferon Alpha 2B for 4 weeks at a high dose, 48 weeks at a low dose.  

Doctor said that with a IIB it is debatable on adjunct treatment but that most recommend it, especially with her age and health being good, better to attack hard now.

Any comments / suggestions / expectation setting appreciated.  We have a couple weeks before she will start treatments.

 

Thanks!

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Hello everyone,

I was wondering if there was anyone out there that has run into Adrenal Insufficiency post Immunotherapy treatment? My treatment ended late May 2016 (Nivo) due to side effects and a recurrance in a lymph node. Continued to feel poorly and was put on Prednisone for 4 weeks 40mg tapering down to 10mg. Felt great and then a few weeks passed and began to feel poorly again. Finally last week, I was refered to an Endrocrinologist and I was diagnosed with Hypophysitis / Adrenal Insufficiency and have been put on Hydrocortisone 20mg morning 10mg afternoons. I'm feeling ok but not as good as when I was on the Prednisone. Better, just not 100%... maybe 85%. Also, Thyroid is weak so they put me on a low dose supplement. I'm an athlete and during this time I lost at least 40% of my muscle mass. Trying to gain some back but it's a slow tiresome process in my current state.

Was wondering if anyone else has gotten this and how they're dealing with it? Are you on Prednisone or Hydrocortisone? How do you feel? Any long term effects, things to watch out for? Were you able to get completely off the steroids?

Finally, does anyone have recomendations for Endrocrinologists that has experience in Immunotherapy side effects. There are a lot of good Endros out there but few with this experience.

Thanks!

Juan

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Joycem's picture
Replies 7
Last reply 9/2/2016 - 5:20pm
Replies by: Joycem, Bubbles, Ed Williams, Anonymous

Hi

While obsessing/second guessing over my decision today to decline adjuvant interferon recommended be oncologist, I came across this article that I felt was helpful, but I am unclear what "translational oncology" (in "the Oncologist-Journal of Translational Oncology") means. Is this a mainstream reliable source in your opinion? 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I'm guessing since author is associated with Sloan-Kettering this is pretty solid source? 

There seems to be some murkiness as to whether I am properly staged at 2C or 2B according to my oncologist, (which significantly impacts my prognosis.) He said he was going to seek clarification from pathologist. I guess what is, is tho, and I don't think it would change my decision or follow up plan.

Best to you all, 

Joyce

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michaelinsocal's picture
Replies 6
Last reply 9/2/2016 - 3:23pm

Hello fellow melanoma warriors. Just a quick update on me.

DX stage 3A Nov '13. Been nearly three years, which is a bit of a milestone for anyone who's fought the good fight. 3rd year CT scans came back "all clear", NED. Praise the lord and the wonderful support from family and friends, my wife in particular and of course, this community which helped me coupe of all the initial uncertainty.

There is never a good time to get any type of cancer but things are changing for skin cancer. The awareness is spreading like wildfire and the research and options to fend this horrible disease off is expanding. Its definitely not the same fight it was 5-10 years ago.

Never lose hope and live life to the fullest.

Thank you, community, for all of the love and support.

Michael in SoCal

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Regarding recent comments on this forum, it is all very well for those with the benefit of insurance in the US to imply that an SLNB is a no brainer with thin melanomas, be your own advocate etc etc. Many readers of this forum will be from Europe where, as is mostly the case and definitely is where I am in the UK, consultants will follow nationally set guidelines. As medical treatment is free to all in most European countries, there is a limit to funding and patients cannot just demand procedures just because they might want them. The guidelines in the UK are backed on the AJCC 2010 guidelines and these di not call for an SLNB under a depth of 1mm so it would be highly unlikely that you would get one.

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SueDan's picture
Replies 2
Last reply 9/2/2016 - 12:05pm
Replies by: SueDan, Anonymous

My husband (Dan) was diagnosed stage 1 in October 2014, but the Drs. had varying opinions on the length of time to have 3 month follow-up visits so I'd appreciate any insight anyone has.  Dan wants to cut down to 1 or 2 visits a year now, but that makes me nervous as he always has something frozen or biopsied at every 3 month visit (biopsy results are anywhere from benign to severely atypical).  Thanks for any info you can give us!

Sue Byre

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/2/2016 - 11:55am
Replies by: Bubbles, Ed Williams, MoiraM

Has anyone seen any research on what may make someone more likely to respond to treatments (specifically ipi and radiation).  Our dietitian said not to have too many fruits and vegetables during radiation-something about too many free radicals.  I know this is the million dollar question, but just curious what we can do to improve the odds-3c.

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marcelwshorts's picture
Replies 1
Last reply 9/2/2016 - 9:37am
Replies by: Ed Williams

Hello,

I'm new to this so bear with me. We found the first melanoma on my back in 2014, during a normal physical. (I am  caucasian and have many moles). 10 months later we found a second one. Now I'm going to the dermatologist every three months. This time they want me to get set up with a mole mapping appointment. So that will happen in the next few weeks. 

However, the only reason they found the second melanoma so soon was because I asked my doctor to take one mole off to ease my paranoid mind. Unfortunately it came back positive for melanoma. 

Since then they have only done one biopsy (which thank goodness was negative). I try to wear sun screen every time I go out. I go every three months to get skin exams. But I still feel like a ticking time bomb. 

So I guess what I'm asking am I doing everything that can/should be doing? 

Thanks 

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Anonymous's picture
Anonymous
Replies 0

See other post

Stan

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Nikkib's picture
Replies 7
Last reply 9/2/2016 - 2:20am
Replies by: Nikkib, Cindyrandy, debwray

Hi everyone. I am new to this forum. This week I was diagnosed with Melanoma after watching a very small change on my leg over some time. I am glad I got it checked out, as my GP didn't think it would come back as anything. My diansosis after the initial encision is Melanoma In Situ (no ulceration) supervening on active regressing compound melanocytic naevus. I was told this is good news as it is in situ. My concern is that on the report it states that the tumor was found in the top layer of the skin extending to the granular layer. it states however "in the papillary dermis most of the change comprises of an infiltrate of lymphocytes and melangophages with a small number of bland naveoid melanocytes. These changes represent active regression in a melanocytic tumor. There is no ulceration. Deeper levels wer performed which confirm the changes discribed.". This has me worried as there has been regression. Does this mean that they can't actually determine how big the melanoma was as it may have started to regress? Are they able to be sure it is insitu in this case? I am terrifed. I have been referred to a dermatologist who I see in two days to see if I will need a wider excision as the margin is only by 0.3mm at present. 

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casagrayson's picture
Replies 2
Last reply 9/2/2016 - 2:01am
Replies by: Anonymous, jennunicorn

I was just looking over my husband's pathology report from his first primary.  The report says that the lesion is melanoma in situ.  However, it is 0.4mm deep, references a Clark's Level II, and has a mitotic rate of 1-2. 

I think I remember Janner saying that in situ has no depth listed.  Is that right?  What would be the staging on this lesion?

Strength and Courage,

Susan

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Sflynn's picture
Replies 24
Last reply 9/1/2016 - 4:54pm

Good evening everyone... 1 year to his diagnosis, I lost my husband to this terrible this disease on Thursday 8/25.  He was only 50. I pray everyday that a cure will be found. I am left to pick up the pieces at only 40 years old with a 16 and 19 year old. It's not fair. 

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FengSFamily's picture
Replies 14
Last reply 9/1/2016 - 4:49pm

Dfeng lost his battle with Melanoma on August 6, 2016. He is survived by three young daughters ages 5, 3, and 2 years old, as well as his wife.     

 

https://www.melanoma.org/community/profiles/dfeng/activity

 

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maboco3's picture
Replies 3
Last reply 9/1/2016 - 4:22pm
Replies by: Kim K, Patrisa, JoshF

Okay. I was diagnosed about 5 weeks ago after a painful lesion was removed from the middle of my back. My initial appointment with the cancer center is tomorrow, and although I've been dealing quite well with it, I'm nervous. Labs are Breslow 3.1, Mitotic rate 15, and the such. I know what to expect tomorrow from medical websites, but thought I'd ask here for first hand knowledge from real people. Thanks for any advice.

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Lee Parlier's picture
Replies 4
Last reply 9/1/2016 - 4:17pm

I just got the news from my doc at Duke that she she positvive that I am not a resonder to yevoy. She has recommended a trial involving Durvalumab, Tremelimumab, IMCgp100. Does anyone have any knowledge or experience that you could pass on? Any info would be appreciated.

Lee Parlier

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