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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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, brain mets, 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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Anonymous's picture
Replies 5
Last reply 3/11/2016 - 5:29pm
Replies by: Anonymous, Kim K, utee72

Hi everyone-

I went to the skin doc in early Feb to have a mole looked at. It actually looked nothing like a mole, more like a red blister, but it had been a little itchy for a few months, and I am fair-skinned with blue eyes (and have many, many blistering-sunburns in my past) so I thought I would get it looked at. The dermatologist that I saw did a biopsy and sent me away saying she would call within a week with results. Well, 2 weeks passed and no word so I called them. The office said that the sample had been sent to France and was "under consult" and they would call me within the next couple of days with some answers. So 2 days later they called and said that the biopsy did NOT show melanoma, but was so atypical that I need to be referred to a skin surgeon to perform the Mohs procedure. Well I waited and waited for they to contact me (as I was told they would) and finally about a week later my dermatologist called me and told me that the skin surgeon wanted me to go to an oncology surgeon instead and have a sentinel lymph node biopsy and skin excision at the site with 1cm margins--apparently he surgeon read my pathology report and decides that would be the best route for me. This was all (and still is) blowing my mind. So I go and see the surgeon 2 days ago and am yet to get an answer whether or not this thing is melanoma. They say they can't tell until they do the biopsy of the lymph nodes and if those are clear then "I'm all good." The report says that the sample had findings raising concern for melanoma, but also reassuring characteristics. Whatever that means. I am a worrier. I have spent countless hours crying and confused over this situation. I got a copy of the pathology report and it is like looking at a different language. The dermatopathologist says on the report that overall he favors "atypical dermal epithelioid cell nodular melanocytic proliferation with indeterminate biological potential, associated with dermal nevus remnant, extending to the margins." Can anyone tell me what that means? Or offer any advice when it comes to dealing with this? I want to be positive but I am terrified. And even if the lymph nodes are clear does that 100% exclude this from being melanoma? I am going for SLNB and surgery next Tuesday:(

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Anonymous's picture
Anonymous
Replies 13
Last reply 3/17/2016 - 5:32pm
Replies by: Anonymous, keepthefaith11, Mat, MoiraM, Maria C

I am having a bad reaction to yervoy and radiation combined that i am doing at the moment.

I was up all and down from around midnight seven or eight times for bathroom visits and that is despite taking 12mg of steroid at onset of symptoms.

What would be the usual dose for a bad case ?

And is dose given a couple of times a day?

I will probablyhave to go to hospital anyway i think.

 

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DZnDef's picture
Replies 3
Last reply 3/12/2016 - 3:18pm
Replies by: Mat, DZnDef, Polymath

Hello all you wonderful people!

My brother has just today started Zelboraf.  Could any of you that have been on this drug share your experiences?  It will help us to know what to expect.

For those of you that have followed my brother's story, he was supposed to start Nivo this week.  But unfortunately, he had swelling in his brain due to reducing the Doxymethasone too quickly over this past weekend.  He has been hospitalized ever since.  They've reduced the swelling via IV steroids so he no longer speaks as though he is on an acid trip.  But his doctor determined he is too weak and his tumor burden too high to start with Nivo so he is starting with Zelboraf.

As a side bonus, I took him with me to visit my own oncologist, Dr. Steven O'Day, two weeks ago and Dr. O'Day offered to consult with my brother's Doctor on his treatment.  I thought that was awfully kind of him.  So my brother's Kaiser doctor has been speaking with Dr. O'Day.

Looking forward to any Zelboraf (Vemufranib (sp?)) stories you all can share.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

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jennunicorn's picture
Replies 31
Last reply 4/2/2016 - 12:28pm

Got my scan results this morning..

Good news: no mets in distant organs. Yay!

Inconclusive news: lymph nodes in my neck, one in my left armpit and one in my left groin lit up. My oncologist is sure the neck ones lit up from a cold that I had a couple of weeks ago. She's not sure why one lit up in my armpit, maybe also related to the cold. The groin one is most concerning since it is the area that I had my SLNB in which 3 nodes removed had melanoma. 

So, tomorrow my oncologist will be going over all of this with the tumor review board to see what to do next. If they feel it is concerning enough and they are able to get a needle in the nodes to check for melanoma then they might do that. Or, I might just get another scan sooner than planned. I would normally have another scan in 12 weeks, and now might have another in 6 weeks to check on everything.

Has any other stage 3 folks had a similar experience?

I'm relieved that it's not terrible news. Of course, it isn't fun not really knowing why certain lymph nodes decided to light up. 

Thank you to everyone for their positive thoughts while I was having my scanxiety! 

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

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Maria C's picture
Replies 6
Last reply 3/11/2016 - 7:30pm
Replies by: Maria C, jpg, DZnDef, Kengeo3

Hi all,

Just did a search on this forum about steroids as I've been on and off them for the past 5 months, and am currently on another fairly long dose of them. Starting to get concerned about the short and/or long term side effects of taking predisone for the side effects of ipi/nivo. (like so many health issues, one complication leads to another...)

Has anyone learned (by either research or the hard way!) what to look out for, and if there's anything one can do naturally to counterbalance whatever havoc steroids tend to unleash on one's system?

Many thanks in advance for any advice -

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

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Gordknight's picture
Replies 4
Last reply 3/11/2016 - 5:00pm

So just to give you a bit of history here back in October of 2014 I was diagnosed with stage 1a melanoma on my neck.  It was .22 mm depth, clark 2, no regression, no ulceration, no mitotic figures identified.  I obviously did not have SLNB.  Fastforward to two weeks ago I noticed a tiny (less than pea sized) lump about a half inch away from my scar.  I instantly paniced thinking it was a subq in transit met which would then obviously fast track me to stage 3.  

I went and saw my derm today and he looked at it and removed it saying that he thought it was just a new mole developing ( I couldnt see pigment with the naked eye, could just feel it.)  I asked him about my fears and asked him what were the chances that this was related to my melanoma IE in transit met.  He said as close to 0% as he could say without actually saying zero.  He said the .1% chance it was related is the reason he removed it.  He then said less than 2% of melanoma patients with a melanoma as shallow as mine was recur and even then its almost always a local recurrence.  He has been practicing for over 15 years and he said that he has only seen in transit melanoma four times, all of which were black in color and from lesions deeper than mine.  He said they can be non pigmented or red or pink but they are almost always black if subq.  

Now I trust my derm with my life, but I am back into full panic mode now.  I can't help but think this is an in transit lesion.  Any thoughts or reassurance would be great if you have a similar experience or hell even if you havent but have something to add.  Id really appreciate it.  Thank you!

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Fsudom959's picture
Replies 8
Last reply 3/21/2016 - 6:06am

I am on my second quarterly dermatologist visit since being diagnosed with stage 2a melanoma.  The first visit the doctor found 3 spots he wanted checked out, a shave biopsy, a punch biopsy, and a excision with .5 cm margins(no biopsy).  I had to get them all done on separate days.   Now I just got my second check up and he wants to do three more biopsies; two punch, one shave.  All on seperate visits.  They say that they can't do more than one biopsy on the same day.  Is this customary? 

 

 

 

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