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 9
Last reply 1/31/2016 - 4:15pm

If I'm taking yervoy and have no side effects does that mean it's not working. I mean do you have to have side effects for it to be working. Anon

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keepthefaith11's picture
Replies 15
Last reply 2/4/2016 - 9:15am

Hi everyone

I have been lurking since my father's initial diagnosis back in December. He had a mole on his chest that started bleeding. The biopsy came back as stage 3b tumor. 3.2 mm, ulcerated, mitotic rate 1. Doctor could feel a lymph node in the armpit enlarged so he asked for a scan, which came back clear with the exception of the node. Last Thursday he had a SNL which showed cancer in the suspected mole. While in surgery they took out a total of 8 nodes. We got the results back today, 2 of 8 were affected. The enlarged on was extracapsular, which really got me worried. The doctor wants to start Yervoy within two weeks. He said radiation was not necessary since the lymph nodes have all been taken out. Everything had clear margins.

I am really worried, how bad is this? I know it's very advanced, but we were just thankful it had not spread to any other organs. Any help would be appreciated. Any advice? Is this the normal progression for treatment?

Thank you so much for reading, you seem like a wonderful community!

Ps. My mother has stage 3 breast cancer 14 years ago. 7 nodes involved. She is fine and has never had a recurrence. I guess this is what gives me hope and makes me not completely lose it.

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DZnDef's picture
Replies 6
Last reply 1/28/2016 - 7:49pm
Replies by: DZnDef, WithinMySkin, BrianP, Anonymous

Hi everyone,

I took an MPIP "holiday" over the Holidays and pretended I didn't have cancer for a while.  It was nice to just enjoy living life for a bit.  I started lurking again earlier this month but decided today I should finally post again.

Today is the 2-year anniversary of my recurrence.  After being NED from surgery in 2012, a chest X-Ray on today's date in 2014 revealed new spots in my lungs.  I thought I was a goner in a few months.  I never expected to be around in 2 years still feeling "healthy".  So I thought that was worth celebrating.

As for the update, some of you may recall that I made the wacky decision to pursue alternative treatment first which I started in March of last year.  This was after January 2015 scans showed both growth and a new met (after several mostly stable scans).  In December 2015 I decided to have scans again after an 11-month interval.  I was really hoping the scans would be definitive (either definitely working or definitely not) so my next steps would be obvious.  Unfortunately, as is so often the case with this disease, the results are not so cut and dry.

The good news:  No new mets!  (Yay!)

The bad news:  All mets are larger.  (Boo.)

My conventional doc (the pulmonologist in this case) wanted me to start conventional treatment right away.  My NY doc (the alternative one) was not concerned with the results as she claims the growth is likely inflammation not true growth and to focus on the news that there were no new mets over an 11 month period.

Additional odd tidbit:  They only mentioned one met in my right lung where previously they always mentioned two (one of which was always stable at 3mm).  They didn't say it went away or is no longer visualized.  They just didn't mention it at all.  Maybe it fell between the slices this time and is still there.  At least it didn't get any bigger or it would definitely have been mentioned.

Which is all to say I can't be sure this treatment is working and I can't be sure it isn't.  I'll just keep at it for now and continue to reserve my right to change my mind at any moment.

I appreciate so much everyone sharing their stories on this site.  I'm constantly re-evaluating what my next steps might be based on the valuable information you all share.  I am such a coward when it comes to drugs. I hope I can muster the courage to jump in if it proves necessary (and I hope I have the wisdom to identify that moment if it hasn't passed already).

Happy New Year to all of you and I wish you all good health

Maggie

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

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jamieth29's picture
Replies 24
Last reply 1/30/2016 - 2:10pm

Just got done at my local oncologist visit and found out they approved it for me. I was very surprised just wanted to let people know some doctors and Insurance may let people get it. I still have some hurdles to get through the first big step is pet/ct and MRI next Thursday. I asked my doctor how long we would go for and his opinion was 6 months or a year. I'm still unsure about my decision and am not going try and not Look past scans on Thursday hopefully the come out clear. I tried getting Nivo through a trial before but relapsed locally before trial started. So I am basically getting trial at home. Everything in 3c N.E.D is kind of a unknown as far as side effects and such but leaning heavy on going for it. I have read info on the trial that Celest went through a couple times so there is some data. Any thoughts or questions?

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Anonymous's picture
Anonymous
Replies 11
Last reply 1/28/2016 - 6:15pm
Replies by: Anonymous, JuTMSY4, BrianP, Polymath, Mat, Bubbles, pookerpb

I need some advice on treatment options.

I have mets everywhere in the liver, bones, spine, neck, lymph nodes , lungs and abdominal wall.

I have been on Keytruda for five months.

The doctor wants to switch me to Nivo to see if i respond to nivo. He says he has patients that responded to Nivo that didnt respond to Keytruda but I believe it is basically the same drug so am not really keen on doing it.

I mentioned Ipi and he said i could try that.

What do other people think? Which is the better option?

Thanks

 

 

 

 

 

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ashleyc's picture
Replies 5
Last reply 2/1/2016 - 3:47pm
Replies by: mary1233, ashleyc, Kim K

Father has mucosal melanoma. Had a recurrence after four years from diagnosis. It was removed surgically and now our options are watch and wait or choosing chemo with interferon or Cisplatin and Temozolomide. Anyone else been faced with this decision have any advice? I did ask about ipi but was told there was only one study using it as adjuvant therapy, the dose seemed too high and risky, and it was for those in stage III with a positive lymph node. So oncologist made it sound like it wasn't an option. Thank you to all in advance. 

ashley chavez

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Okay, so I was at work today and I noticed a black dot under the palm of my hand. It's about the size and looks like a sharpie mark on my hand. I could almost swear that it used to be a freckle but i can't find any proof (previous pictures) I didn't have any pictures of my hand where the dot is. 

What im asking is: is this worth going to a dermatologist to get checked out? Could it be a blood blister I just realized i had? Or should I just give it time and see what happens from there? I am currently flipping out and I don't know what to do 

anything helps I appreciate it a lot 

please email me personally: jrvermilya@me.com

i will then send a picture as I can't figure out how to tag it in the forum. Much Thanks

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I am getting opinions on treatment for a 1.3 mm melanoma on my leg that was removed and microscopic cells were found in 1 of 2 sentinel lymph nodes that were removed in my groin.  My surgein is recommending all the lymph nodes be removed in that area - I am deathly afraid of getting lymphodema.  It seems some people wait and see and then end up doing it.  Please tell me if you had it, did they find melanoma in your other lymph nodes, do you have lymphodema?  Is it as bad as I think - should I do it?  Thank you to all - I have been so humbled by this experience that has changed my life 3 weeks ago,  I am blown away by the generosity and kindness of strangers to help each other.

 

God Bless you ALL!!!!!

XOXO

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Renate's picture
Replies 5
Last reply 1/27/2016 - 2:10pm
Replies by: Renate, AllysonRuth, Janner

I had a 1.3mm melanoma removed from my thigh and microscopic cells were found in one lymph node.  They did a MRI and PETCT Scan and the results were clean except there is a gumball sized hotspot on the PET Scan on the opposite side of my pelvis where the melanoma was found.  My dr thinks it is probably metabolic activity in my small intestine but to make sure they are going to do a CT Scan to see if its solid - Has anyone had anything like this???  This waiting and worrying is hard to handle.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/27/2016 - 12:00pm
Replies by: Anonymous, Fen

Just recieved scan results.   I have been on ipi/nivo treatment and appear to be responding.   No major side effects.  My results look like a response so far. It's been 6 months and I feel good.   I'm interested in the thinking about the longer term durability of the treatment.   What is the likelihood or relapse or additional mets.   Thanks  for feedback.   Chris.  

Chris. 

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LoveLife's picture
Replies 8
Last reply 1/29/2016 - 8:12pm
Replies by: Cynlee, LoveLife, Janner, Anonymous

I wanted to share my story since I am going in for a biopsy for an atypical mole on my foot. It will then be sent to a pathologist and it's irregular, discolored and with black dots. For those of you with short attention spans, I'll ask my question now before I share. I am having a wide exision biopsy on my foot? How long was your recovery? What was the procedure like?

Now that my question is out, I also wanted to share my story because I'm scared and I've already learned so much from reading this Bulliten Board. Today is the day I audition for a dance company that I've been training several months for. I'm 30 and even though I was overweight and miserable for most of my early schooling, I had a great life change in my 20's and started to salsa dance more intensely. The irony of it all was that I was told I was not the ballet type when I was 5, but Salsa is like ballet with congas!

It took me a long time to feel comfortable in my body. I hadn't seen my doctor in a while. I had a blood clot in my leg that traveled to my lungs (pulmonary embolism) when I was 24 but this is the healthiest I've ever been. I got really sick with a random virus before Christmas and booked a last minute appointment to show my doctor a growth on my pinky toe. It wasn't discolored but she sent me to a podiatrist to have it removed. What I thought to be a superficial visit to the podiatrist became a concerning visit. I actually felt weird going to the doctor for it.

The Podiatrist looked at my toe and then started asking about another mole on my foot. I've had this mole since I was a child. I've had two and while one of them has faded, the other has become more discolored and dark. I made a joke about it and then the Doctor looked at me with a look of concern I couldn't shake off. He asked me if anyone in my family had skin cancer and then took a step back and said, "You need two surgeries and I'd like to do that in my outpatient clinic at Beth Israel Hospital in Boston.

He then asked, "Can I draw on you?" My first reaction was, "Can I audition on Tuesday?" He didn't look amused or say anything about dance. He then drew the shape of an eye-lid on my foot. He explained how that I needed a wide-local excision. At that point, between his concern and urgency, I felt scared. I asked if this is something that could happen on an existing mole and I can't remember what he said. All I heard was, "My staff will call you from the hospital," and there I was sitting in the doctor's room alone. 

I left the office and went for an x-ray. He said that the grow could be an extra bone but also wanted to remove the mole and the skin underneath to have a biopsy. I usually have a delayed emotional reaction to things. I'm really good at responding to a crisis but this visit was different. I called my primary care doctor since I need to get clear for surgery and she said that I'd have to go on medication before the surgery since I've had a pumonary embolism and bed rest is risky for me.

I took a good long look at the mole when I got home. It's irregular, two different colors and I have some black dots on the side. I remember is scabbed the last time I went on vacation. I also have a new one that appeared on the sole of my foot. I'm scared and in what I've read I have a lot of respect for those with Melanoma. I do not have an diagnosis since I am days before my surgery but I kept telling my friends two weeks before this happend that I felt like I needed to start juicing and change my diet to feel more energy. I've been calling the office everyday since the doctor needs to submit his notes in order for me to be scheduled. He hasn't done that since Thursday.

I know it could not nothing, something, or life-changing. Either way, foot surgery at the peak of my dance is really upsetting. I went to rehersal last night and cried the whole way home. I wanted to ask if anyone else has had a wide exision on their foot and if so, how long did your recovery take? I obviously won't be able to place any pressure on it and I walk to and from work.

Any advice would be appreciated and for those actively fighting melanoma, I thank you for sharing your story. It's helped me a lot during this time of uncertaintly. In my gut, something wasn't right about that visit. When I played sports we always had to get to know our opponent to create a strategy. I feel like the more I read, the better I can be prepared but at the same time, I just want to know what's going on with that mole.

Thank you for reading and sharing in advance.

<3

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faisrum's picture
Replies 5
Last reply 1/27/2016 - 1:40pm
Replies by: dnovak, faisrum, Janner, JuTMSY4

Dear Forum members,

Yesterday ( 25th Jan, 2016 ), my 7 yr old boy was diagnosed with Spitzoid Melanoma. This information is hard to absorb for me, as if this is true, this is one of the rarest case. Am originally from asia, my boy came to this country when he was 1 year old. I have a brown skin and my son is having brown skin too. He never had sun exposure. Neither my family or my wife's family has a history of melanoma or skin cancer. 

My boy had a normal looking mole and overtime it changed color. We were planning to take him be seen by doctor. But last month my boy got hurt on his mole while he was playing. His doctor's visit and diagnosis started right away. His mole was shaved off from his arm and was sent for biopsy. The biopsy result came out with a dilemma as below:

It stated: Significant atypia is noted but the degree of atypia could possibly be seen with a traumatized Spitz Nevus. This case presents conflicting features. Although the lesion is superficial in sampling, the degree of nuclear pleomorphism and immunostaining pattern are worrisome for the possibility of a Spitzoid malignant Melanoma. Despite this, a diagnosis of a traumatized benign spitz nevus is more plausible in a 7 yr old patient. Given the diagnostic diemma, the case will be sent out for a second opinion.

And as stated in the beginning, I received the second opinon that it is Spitzoid Melanoma.

Dear members, I have no clue where to start with. I live in Allentown, PA. Please advise me how can I reach out to the best facilities that can further diagnose and treat this.

May God bless you all.

Best Regards,

M.Haque

 

 

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Anonymous's picture
Replies 2
Last reply 1/26/2016 - 12:02am
Replies by: jennunicorn, Janner

Hi, this is my first post on here so I'm sorry if this isn't the right place for this, I'm just starting to get very nervous and my regular dermatologist doesn't have an appointment for almost a year.

Anyway, I have a family history of melanoma (my uncle passed away a few years ago shortly after being diagnosed with aggressive melanoma and both my mother and sister have had "precancerous" moles removed) and have very light skin and despite always wearing sunscreen burn very easily and have suffered several sunburns severe enough to make my skin blister. I used to be regularly checked by a dermatologist for an unrelated skin condition and she remarked I should keep an eye on a mole I have on my elbow but I honestly forgot and haven't been for several years now. A year or so ago I started noticing new moles but they were small and I didn't think too much of them. Then about 6 months ago one very small one got very itchy and started bleeding periodically for a week or two, but the itchiness has since dissipated.  Then the other day I noticed yet another new but normal looking mole (small symmetrical distinct edges etc.) so I started checking the rest of them and see that the one on my elbow is about 5mm, asymmetrical and has blurry edges, but I honestly don't remember how it looked the last time my derm saw it or if it changed. None of my other moles seem to have changed including the one that was itchy and bleeding. I called my derm but she doesn't have an appointment for almost a year and my insurance won't let me see someone else. I asked my pcp about it but they said there was no point checking it out because it isn't raised or changing dramatically. 

I guess my question is do I need to be worried and if so, enough that I should pay out of pocket to see a different derm, or is it safe to wait the year and just keep an eye on it? I'm just really nervous because my uncle put of getting his mole checked and by the time they caught it there was cancer all throughout his system...

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jenny22's picture
Replies 13
Last reply 2/3/2016 - 12:34pm

Hi to everyone,

Many of you have responded in the past to some of my posted regarding treatment options for stage 3B......

I now feel like I have a decision to make and no idea how i am going to make it.

Quick recap: Recurrent 3B.....2 intransit/local recurrences....one 11/14 and one 11/15....

Vaccine Trial Spring 2015 after 1 st recurrence

Just completed  (1/12/16)  high dose radiation.....5 treatments...by the way, side effects VERY mild and now bad.....

Radiation for local control...thought being since both recurrences were in the same place, maybe this would do it ...but of course we know it had no benefit for distant spread.

So of course my main concern at this point is what is the best option to prevent further recurrence and obvously distant mets? 

Current MED ONC-

NYU- ANNA Pavlcik- whom I adore- will not give me IPI due to microscopic colitis from Vaccine trail...it reseovled on its won and never needed steroids, but as a result she will not give IPI even at 3mg.....she is reccomending Leukine now that I have compelted radiation.

MSK- Mike Postow- not inclined to offer IPI......

U PENN- I met with Lynn Shcucter last week...she feels IPI at 3 mg is the way to go, and feels my risk of ANOTHER recurrence is 50% or better...including distant mets....Pavlick never acts as if she thinks its quite that doom and gloom. Schucter seems to think she can manage any side effects and at the first sign of anything we would stop it...even if i only got one dose in, or maybe would get all 4.....

She was kind enough to call Dr. Pavlick and discuss with her....to explain her point of view......and mine...

Dr. Schucter knows that i am leaning towards doing something more aggressive.....I cant help but think that IF this does come back that  i wont be able to live with myself......wondering why i didnt do something more agressive than leukine when i had the chance.  (BUT i would hate to leave dr. Pavlick)

I know some will say it has almost the same chance of working if it does come back, but i think that is game changer...then having to live witht knowing you are now stage IV, something all of us hope to prevent.

I am scheduled to see Dr. Pavlick on Monday.....Dr. Schucter gave me her thoughts on waht i should say to dr. pavlick...

Just curious to hear anyone else's  opinions....TOP DOCs with completely different opinions.

Schcuter said to me" I hate when we put patients in this position"...no wrong answer, but all differing opinions.

Thoughts friends?

THANKS!

Jenny

 

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Gothikchile13's picture
Replies 1
Last reply 1/26/2016 - 7:19am
Replies by: rosa1

Hello all. My dad was diagnosed with malignant melanoma under his right arm back in June. He's had many different therapies including radiation, keytruda, and one dose of chemo. Between having radiation and the chemo he developed sepsis pretty bad. Since then he has been very confused (though he still knows who me and my family are, he's just out of it).

He's had a few brain scans and the cancer hasn't spread to his brain or anywhere else really. After they did the first chemo treatment the doctor said that he was too weak to continue chemo and recommended we check him into hospice. He is completely unable to care for himself due to the confusion and weakness in his limbs from lack of activity. I'm just wondering if there are any other options then to let him rot in a hospice center.

I know it sounds really bad and there probably isn't any hope in this situation but I'm trying to do anything I can to help him.

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