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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Jsneathen21's picture
Replies 6
Last reply 12/18/2014 - 10:37am
Replies by: Janner, Jsneathen21, Anonymous

I am 26 years old it took approximately 2weeks for the dermatologist to tell me my results of this even... They sent it off for second opinion at a university even.. To tell me today I have this? And that it's rare in my age group and at all!! Does any one know anything about this rare type? Please let me know thank you!

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jenny22's picture
Replies 4
Last reply 12/10/2014 - 10:36pm

Hi to all who may read this....

It is hard to stop my mind from wandering, and my fingers from clicking away on the internet. After making it through 6 years with my husbands stage IIIA lung cancer diagnosis, I thought i would have been better able to handle all these feelings and fears.  He is a SURVIVOR and doing great almost 6 years later.

But I remember the beginning and all the those awful thoughts you cant stop thinking.  So now I am stage IIIB melanoma, just 14 months after stage 1B.....everyone said i had better than a 90% chance of no recurrence....so i guess i am just one of the unlucky ones.

A few things I wonder about:

1.  Is it worse to be diagnosed at stage III, or progress from stage I to Stage IIIb......?

2. I am considered IIIB based on intransit mets, (2 very small .5mm subq bumps near orig site) but with negative nodal status.....considered N2c....i have even been able to find some data that says N2c has a 69% 5 year survival as compared to overall IIIB which shows 59% 5 year survival.  (though we know all these stats are old)

3. So hard not to have many treatment options in the adjuvant setting for recurrent, resected IIIb......watch and wait doesnt feel great.....working on vaccine trials.

4. I know some poeple do survive this, but how likely is it that IIIB always progresses to IV?

5   It recurred in 14 months after stage 1, so worried that makes it more likely to spread again, and faster....

I have seen MEL experts at SLoan and NYU (michael postow and anna pavlick)....waiting for further info on vaccine trails from NYU, sloan has none.  Monday seeing Philip Friedlander at Mt. Sinai who may have trials and similar consultation tomorrow at Rutgers with Janice Mehnert for other trial info.  Even keep wondering about Interferon, though less interested in that.

I am a voracious reseracher and find myself online after midnight when i cant sleep.....wodinering if i should be running to MD anderson, Dana Farber....etc

What to do, how to get thought this???????????????  as we know many who have survived this are no longer here and writing daily...as they are out just lviing their lives..... so we see more of "us" who are in the thick of it, everyday

As the subject said: "so many questions, so much fear"

Thanks in advance for any replies and insight!

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_Paul_'s picture
Replies 9
Last reply 12/12/2014 - 6:27pm

I started ipion 9/24 and was scheduled for my last infusion on 11/26. My onc suggested to skip the last one as my pituitary more than doubled in size and I am now on prednisone and testosterone as a result. My next PET/CT scans are not scheduled until end of January and I can feel change occurring in my abdomen (it feels like a new tumor is growing on my left side under my rib cage). I don't want to wait that long since according to the onc the conventional outlook after stage IV diagnosis is less than 1 year, and it has already been three months since I was restaged. The way I look at it is if the ipi failed, then I have used up 3 of those months. I know it takes time for ipi to work but if there are new tumors or a lot of growth I am hoping to get on Keytruda sooner rather than later.

My onc is going to coordinate with my clinical trial Dr. (I am on a trial that combines ipi and stereotactic radiation of one tumor) so see about doing just a CT earlier.

So let's say I end up on the Keytruda. From what I have been reading Keytruda is slow too, but maybe not as slow as ipi. When do you decide whether its working or not? How long does one wait? I know these are subjective questions, and individual reactions are all different, but there is so much experience here on this board.

In the meantime, my sister who is a GP suggested I investigate palliative care while I am still in good shape. So I met with the folks at SCCA in Seattle and while it was a difficult conversation, I am away feeling good about their ability to manage pain should treatment fail. The nurse practioner I spoke too promised me that they could prevent a horrible agonizing death. Of course I am hoping to avoid dying any time soon, but it is comforting not to have to fear a bad outcome!

Thanks! - Paul.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/10/2014 - 3:05am
Replies by: JerryfromFauq

Trial for mucosal melanomaa journey men:   ---- http://trialx.com/clinicaltrial/86899/mucosal-melanoma-su011248-patients...

 

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/27/2014 - 3:03am
Replies by: Anonymous, casagrayson

Has anyone had any success using alternative therapies in treating their melanoma either in conjunction with mainstream treatments or as stand alone treatments?

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spitfiregirl's picture
Replies 4
Last reply 12/10/2014 - 2:20pm
Replies by: Ed Williams, spitfiregirl, Anonymous

hi everyone, first time joining the board, but have been reading your posts and gaining knowledge and strength!

I'm a few weeks away from determining which clinical trial to participate in (or worse case - biochemo!). I will time out of these options around 1/8 or 1/9. I'm stage 3A resected (1 SLNB found, other 18 nodes clean - they thought it was .5mm but they went back and were able to find aggregate cells to bring it to the >1mm mark, which should allow me to participate in the BRIM study)

It turns out I may qualify for the BRIM 8 clinical trial - I was wondering if anyone has participated in this, and what sorts of side effects I could expect. This is a placebo/drug trial (2 of 4 will receive drug).

The vaccine Trial is placebo/drug trial, but 3 out of 4 will receive the drugs.

Lastly, my (new to me) oncologist also suggested BioChemo - which I know is very toxic and intense. Has anyone done this and what were your results.

 

Thank you so much for your help & support!

~h

 

 

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yazziemac's picture
Replies 8
Last reply 12/10/2014 - 12:25pm
Replies by: yazziemac, Anonymous

Hi Everyone

I've posted several times about my Stage 4 husband, Pete, who is soon to undergo Gamma Knife radiation for brain mets after a successful Craniotomy 11 days ago.  He is being treated at Princess Margaret in Toronto.  I was hoping to find some fellow Canadian patients/caregivers, as sometimes our treatment options are a bit different than those in the US.  I live in Kitchener, Ontario, an hour west of Toronto.

Yasmin

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/10/2014 - 6:22am

Hello,

My Husband has had three spots of melanoma found and surgically removed in the last 6 months. All of the spots have been caught early, in situ, thankfully. My Father-in-Law passed away in March from stage IV melanoma. He survived about 18 months after he was diagnosed. We have seen first hand the devastation this cancer can do and we are scared. Luckily, all of my husbands spots have been caught early but he just had three more biopsies taken and we are waiting on the results. The doctor also noticed that his lymph nodes are now swollen. I am hoping that it is nothing but it is worrisome. I guess I am hoping to hear from some people who have been living with this cancer. We keep hoping for a clean skin check but so far that has not happened and does appear that it ever will. It seems like we just have to adapt to living with this cancer. We were planning on trying to start a family but we have decided to post pone. The doctor says that my husbands moles do not not have the usual markers for melanoma and he has been surprised each time the biopsies have come back. I am scared that we might miss a spot until after it is too late and it has spread. Does anyone have any advice on living with this cancer hanging over our heads.

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5dives's picture
Replies 9
Last reply 12/13/2014 - 7:07pm

Hello all, 

Let's go ahead and agree that anxiety comes along with melanoma, okay? 

I'm a (barely) 3b who is on a staggered 3mo rotation with oncologist and derm. I'll basically be seeing somebody every six weeks for the forseeable future. 

Still, some things worry me. I don't like to "bother" my docs, but I find it difficult to navigate things that *might* be indicators of a greater problem / recurrence. For instance, a questionable spot or a new pain. 

Is 6 weeks too long to sit on a new problem? Thoughts? 

Thank you, 

Elaine

http://melanomadame.blogspot.com/

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ChrisB's picture
Replies 6
Last reply 12/18/2014 - 12:27am

Today marks the 20th anniversary of my diagnoses with melanoma.

 

Although I don't come to the boards often these days, my patnet is available for anyone that would like to know my melanoma history.

 

I have been fortunate in that I have been able to live a somewhat normal life (with the exceptions of doctor/scan appointments - etc) and continue to work full time.

 

While I know that this might not be the average life of a stage IV patient I’m hoping this post gives at least a glimmer of hopefulness to others in similar circumstances.

 

My Sincere Thank You to all of you that continue to frequent this board and offer comfort, support and hope to the newly diagnosed and others unselfishly.

 

My heart goes out to all of you, patients and caregivers alike.

 

Chris

Stage IIb December 8, 1994

Stage IV February 19, 2003

Manageable Disease since October 1, 2004

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shz1256's picture
Replies 7
Last reply 12/10/2014 - 1:19pm

Hello all! I've read your inspiring stories every now and then, but have never officially introduced myself. 

My name is Shannon and I was first diagnosed in April 2011 with a small primary on my right forehead while I was pregnant and in my third trimester. WLE and SNB showed one tiny met on one lymph node, putting me at Stage IIIC (due to ulceration on the primary). The primary came up fast and out of nowhere, and after some research, I'm convinced it was nodular, even though they diagnosed it as superfical spreading. After WLE/SNB, I had a radical neck dissection and a partial parotidectomy to try to get al the possible lymph nodes downstream. None of the 17 nodes biopsied were positive. 

After I delivered my daughter, I had PET/CT and MRI, showing all was clear. When my daughter was about 3 weeks old, I started high-dose Interferon for a month (did not do low dose). After that, I had scans to monitor, and was fine until this July, when a 1.5 cm nodule in my right lung popped up on the PET. I had surgery to remove that, went to see a specialist at Memorial Sloan Kettering (since I have Kaiser, and I know they don't have a great reputation), and then started Yervoy in October on the advice of both my Kaiser oncologist and the MSKCC doc. 

On Nov 5, I went into the ER with severe belly pain (thinking it was a side effect of Yervoy). It took a while to figure out what was going on, but it appeared there were 3 large masses on my liver and 2 on my kidney. These looked to be new mets :( I had a scan on Dec 1 to follow up on those shadows, and sure enough, they were definitely cancer. Along with those ones (which had grown), I also had a bunch of other new mets in various places, including my lungs. I should be starting BRAF plus MEK inhibitors as soon as tomorrow, and I am praying that my tumors are responsive (I am positive for the BRAF mutation). 

In the meantime, I'm trying to be as optomistic as possible (which can be hard when I know what my belly looks like), and trying to think about all the amazing stories on here. I'm also trying to be a bit realistic and trying to prepare things for my 3.5 year old daughter and my incredible husband, just in case. 

I've been blogging about this whole journey at http://sunshine-and-shadows.com, if anyone is interested.

I'll try to be on here more often, as I know I can glean so much from all the wisdom here. Thank you and please keep up the hopeful stories! I certainly need them right now!

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Erinmay22's picture
Replies 7
Last reply 12/8/2014 - 10:46am
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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yazziemac's picture
Replies 3
Last reply 12/30/2014 - 5:47am

Hi all

This is from Princess Margaret Hospital in Toronto where my husband, Pete, is getting treated for his Stage 4 Melanoma by Dr. Hogg.  I found it easy to understand and I learned a lot about how immunotherapy works.  It will be basic information for the more seasoned of you, but I thought I'd pass it along.

Yasmin 

 

http://www.campbellfamilyinstitute.ca/CFI/media/Documents/PMCFImmuneTher...

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arthurjedi007's picture
Replies 3
Last reply 12/31/2014 - 9:09am

I was wondering if anyone has heard from Shane? He did the TIL harvest and they had his cells ready but he was in too much groin pain so he was getting it radiated then was going to continue with TIL. That's the last I heard.

Artie

 

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Linda56's picture
Replies 3
Last reply 12/7/2014 - 11:20am
Replies by: Linda56, rick1981

Hello everyone,

 
Thought I should post another update which will give hope to other fellow sufferers.
 
In March 2014  changed from Zelboraf to Tafinlar which shows lesser side effects for sun sensitivity and skin problems.  Tafinlar contains the same substance as Zelboraf, namely vemurafenib.
I had some troublesome months since April 2014 when small lesions started to appear on the scan.
There was among others a possible bone metastasis on the sacrum wing and the doctors were already planning some radiotherapy sessions, but since it didn't hurt anymore, they decided that it was not appropriate to start the irradiation.  They decided to wait until the next scan and the lesion showed unchanged after two months.  
In the meantime, I had an accident and I broke my hip.  This happened in August and during surgery they placed a hip prothesis.  My scan of September showed also various lesions, but the doctors said that this was due to the accident.
And then in October 2014, I passed another petscan which shows NED again.
This is just to say that when the scan shows sometimes worrying lesions, that these can dissappear again after a few months.  During all this time I didn't stop my medication and I feel very good for the moment.  I have very little side effects now and I'm fully recovered from my hip surgery.  
I will be able to celebrate another wonderful Christmas together with my family. 
 
Greetings to everyone  :D 
 

Linda

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