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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Anonymous's picture
Anonymous
Replies 1
Last reply 3/17/2016 - 12:04pm
Replies by: Adam-MRF

We are getting all sorts of spam on this board, which I'm sure has been reported to you. It would be helpful if you could please check in at least once a day to remove any spam. If that's not possible, then maybe you can consider making a member who visits this board freqently an admin.

Thank you.

Stage III, Unknown Primary; 1 positive node in left axilla

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Bubbles's picture
Replies 4
Last reply 3/19/2016 - 5:43pm

Any chance we could use the words 'drivers license', 'pass ports' or 'hemp oil' as triggers to the spam blocker instead of D!@k K....the name of an amazing gentleman and cancer survivor??  Just wondering?? Who knows? Might be a good idea. Not to mention the rick simpson web address? C

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Suzi's picture
Replies 8
Last reply 3/27/2016 - 10:20am

Hi all
I'm trying to educate myself and I get a lille confused with some of the abbreviations, is there a list around here anywhere?
Suzi

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jennunicorn's picture
Replies 10
Last reply 3/17/2016 - 11:59am

I found a recommendation for this book on a blog of a young woman going through cancer. I am almost done reading it and I am so glad I found it!

"Everything Changes: Insider's Guide to Cancer in Your 20's and 30's" by Kairol Rosenthal

It's not a guide really, but it's written by a woman who found out she had thyroid cancer at age 27 and decided to write a book made of many different young cancer patient's stories. 

This is the description from Amazon:

On a shoestring budget and with tape recorder in hand, Kairol Rosenthal emerged from treatment and hit the road in search of other twenty- and thirtysomething cancer survivors. From the Big Apple to the Bible Belt, she dusted the sugarcoating off of the young adult cancer experience, exposing the gritty and compelling stories of twenty-five complete strangers. The men and women in Everything Changes confess their most vulnerable moments, revealing cancer experiences they never told anyone else—everything from what they thought about at night before going to bed to what they wish they could tell their lovers but were too afraid to.

Being 29 myself, it definitely feels lonely sometimes... all of my friends are getting married, having kids, getting engaged and have never had cancer of any kind. Every day it seems like a new fun life event is happening to someone I know on Facebook... and I'm over here like, yeah I just got my first ultrasound and it wasn't for pregnancy! 

Anyway, for anyone else that is young and wants a good book to read to not feel so alone in this cancer world, this is a great one. It's good for all ages, really.

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Hikeratheart's picture
Replies 7
Last reply 3/16/2016 - 8:53pm
Replies by: Anonymous, Hikeratheart, Janner

Hi All,

I want you to know how important this forum is to me since I was diagnosed July 1, 2015, stage 2b. I did the happy dance when after a SNB they found no lymph involvement. My left arm had a breslows 4.5 tumor which was surgically removed. I know this is concerning. I have had numerous excisions(benign) on my legs, and moes surgery on my face in about 4 spots. 

My derma is diligent, and I am also continually self checking.

About 5 weeks ago, I noticed a thick "blister" on my left foot, top of my second to the last toe. It presented like a wart, and so thats how I treated it.  Soaking it and applying compound W.    No amount of compound W, and those wart band aids effected it. It is hard, and pink to clear color, about the size of a dime.  I also have one my right foot, between my toes, a small clear bubble with a dark irregular dark spot next to it.  This to me is worrisome. Neither spot bleeds nor itches.

I see my derma about the following on  Monday, 3/28. 

Please share any thoughts as I move forward, thank you so much!

And a special thank you to all the care, knowledge, information and hope that you all give through this board.

 

Kathy McC

hikeratheart

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jodaro's picture
Replies 2
Last reply 3/14/2016 - 9:09pm
Replies by: Anonymous, Bubbles

Read this yesterday and thought it might be interesting to this forum.

http://www.nytimes.com/2016/03/13/opinion/sunday/the-neuroscientist-who-...

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Yikes! We drove back home, 4 hours from Tampa on March 5. On March 6 new symptoms began, which turned out to be the "other" brain tumor in the frontal lobe. This frontal lobe tumor was scheduled to be radiated the week of March 21 along with the tumor bed of the parietal tumor. However it would not cooperate and generated enough vasogenic edema to impair speech, swallowing, facial muscles and typing. Mac had a second craniotomy 7 days after the first, but this time in our hometown as we had no time to get to Tampa. He is stil recovering in the hospital and will get a feeding tube tomorrow. He hasn't eaten since last Wednesday. We are waiting to hear from Moffitt officially about the dabrafenib and mekinist and whether they can be crushed and administered through a g tube. The research I have done so far indicates that will not be a possibility. 

Mac's oncologist has mentioned Keytruda in the past and it may become the next option. My question is:are there any of you who are managed by a cancer center that is not close to home, but have been able to get the Keytruda infusions in your hometown?

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Kare83's picture
Replies 3
Last reply 3/14/2016 - 12:06pm
Replies by: liberty04281, Janner, CHD

Just a query.. When reading some patients stories, it says Stage at Diagnosis and then Current Stage.

Some patients put Stage 0 or 1 at diagnosis though their current stage might be higher.. Does this mean they originally had a Stage 1 and then the melanoma came back later, at a further stage? 

And first diagnosed date is from their very first Melanoma?

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Smilgon's picture
Replies 5
Last reply 3/14/2016 - 10:28am

Hello everyone,

i just wanted to say hi to all.  I was diagnosed as stage 3B in 2014 and was progression free until last month. A PET scan showed 4 lesions, one in each of my lungs. Insurance here in Switzerland will only allow Ipi monotherapy and, if I don't respond, then I would go on Keytruda.  My question is, are there any trials currently ongoing within Europe on the combination?   From what I have seen and based on recommendations from the US, I should fight for the combo, but don't want to wait too much longer to start a treatment.  Does anyone have any thoughts?

 

Sincerely,

Mike Baker

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Anonymous's picture
Replies 11
Last reply 3/19/2016 - 2:26pm
Replies by: Anonymous, Janner

 

Hi, I'm new here. My 40 year old husband was just diagnosed with t1a melanoma. (His mole taken was on his back). I've read enough online to know the prognostic indicators from his path report are Breslow .45mm, <1 mitosis, no ulceration, and margins "not involved" on biopsy. I realize we are lucky to have caught this early on. However, I am a nervous wreck!! My husband is quite the opposite, very calm and doesn't consider himself as "having cancer". He is able to wait out the results from his WLE (which was this past Thursday) without any apparent worry. I have read that his chances of things coming back clear from the WLE are good, and I am grateful for those odds! I am looking for some reassurance I suppose, although I know there is no one that can tell me for sure that he will be fine. I don't like him to see me get upset so I thought I'd ask here. I've read quite a bit and while I have heard some pretty scary stories on my searches, I have learned a lot about what we are dealing with. I'm wondering if someone in a previous but similar situation can tell me if they have had any recurrences or what the liklihood is? His doc didn't check his lymph nodes, which I know is standard for his thin melanoma, but shouldn't he have at least felt for any lumps? This waiting game is awful!! I am not doubting his doc's competency, he comes well reviewed and is a dermatologist specializing in melanoma. Biopsies were sent to a dermatopathological (sp?) lab. I am more looking for positive stories, perhaps from someone who has been in our situation with similar findings. I have read so many stories about stage I coming back more advanced and with all of he what if's, especially when I think of our kids, I am overwhelmed with worry! I appreciate your replies. 

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Bubbles's picture
Replies 9
Last reply 3/14/2016 - 11:06am

I thought this was a wonderful webinar that Weber presented covering data from recent trials with a view to what we can anticpate to improve melanoma treatment in the relatively near future.  I have written a synopsis on my blog with a link to the webinar itself.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

While the webinar addresses both targeted and immunotherapy, as well as anticipated combo's....Weber's final remarks include:  "I think we...all agree that it is a very bright era for immunotherapy in melanoma...and for cancer in general."

Thanks to all the ratties who have made it so.  Yours, celeste

 

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Maria C's picture
Replies 9
Last reply 3/19/2016 - 7:43pm

Just finished reading "When Breath Becomes Air," a memoir someone on these boards recommended in a post (can't remember which one/when). Can't thank whoever it was enough for the recommendation! I finally felt connected with someone grappling with the intensity and reality and ambiguity of being diagnosed with a terminal illness (like Stage 4 melanoma, despite the hope that it may (or may not) be a chronic illness).

If anyone else has found a memoir or book helpful in this journey, please do share!!! Would love to hear what others are reading to help cope and process this life-altering, future-smashing, unpredictable, and humbling diagnosis of metastic melanoma....

Many thanks -

Maria - Stage IV, MM, partial responder to ipi/nivo combo

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vickiaa0529's picture
Replies 23
Last reply 3/19/2016 - 1:05pm

Hi

I am completely new here but I am scared to death, I was diagnosed with Melanoma last Feb (2015)

I was staged at 1B. I am not sure of the measurements or depth. I did not have a SNB at the time they removed my Melanoma. About three weeks ago I felt one of my groin nodes swollen. I have been having digestion/colon issues and went to my Gastro Dr. She said it was not a node. However yesterday I went for my node scan and yes it is definetly a regional node. Indiganial (sp). They did a ultrasound needle biospy and I am waiting for results. My surgical oncologist said he will remove all of the regional nodes and order a Pet Scan. Then possible other therapy. I am freaking out because he never really said what my chances are of full recovery or any recovery.

Does anyone know if I am going to be OK?

Sorry I am just really scared

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/12/2016 - 2:35pm

Why do you suggest going to a specialist for melanoma? Do you typically just have that specialist do the surgery and give you a plan and never go back? Or do you follow through with that specialist to the end? Are there any of you who do a combination of home town and specialists?

Rebekah

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jaco's picture
Replies 3
Last reply 3/19/2016 - 7:56pm

Stage IV as of August 2015, started the combo drug in September.  I had mild side affects, fatigue main issue. This winter was tough, picked up every bug - colds- flu finally ended up with pneumonia.  I had a pet scan the end of February and saw my oncologist......drum roll.  The combo drugs worked!  I had two tumors, on in my lymph node under my arm and reoccurring tumor in my right groin.  Both are gone and there is no signs of any active cancer cells.  My oncologist said for now I'm in remission.  They took me off the combo drug while I was recovering from pneumonia and have a short "holiday" but will start back in a week.  I can handle the side affects if the combo drug keeps working. Yippee

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