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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gcooperbl's picture
Replies 7
Last reply 4/1/2016 - 8:19am

So my dad got very bad news today....Pembro failed after three doses and it has spread to spine and gotten worse in brain. Doctor doesn't think Pembro will do anymore good, and it's having a bad effect on his body. He didn't even recommend chemo, we are devastated and we don't what to do. Palliative care I guess and make his last few months a joyful one. 

i hate this disease I hate it so much but we must continue to fight it and keep up the research

 

 

 

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OzzieK's picture
Replies 5
Last reply 3/31/2016 - 10:47pm

In the beginning of 2014 I reached out to this board for help after my then vibrant and active 69 year old dad was diagnosed with stage 3 melanoma after having a nodular growth removed from his back. After a wide local excision and the removal of several infected lymph nodes from his arm pit, the melanoma returned just several inches away from where the original growth had been. We knew it was very aggressive.

At that point and after much research and consultation, my dad began seeing a melanoma specialist in Los Angeles. With a new aggressive growth on his back, his doctor had the green light to immediately start him on Yervoy. The results came quickly and the growth began to shrink after the second dose. Unfortunately, following the third dose my dad began to experience severe diarrhea. He was immediately taken off the Yervoy and started on a short course of antibiotics.

At this point, some decisions had to be made. His doctor was involved in clinical trials for anti-PD1 (still months away from FDA approval), but my dad was not eligible.You see, a couple of years before he had been diagnosed with stage 1 LLC (chronic lymphocytic leukemia) during a routine blood test as part of an annual physical. While he had no symptoms of this disease and was seemingly not impacted by it in any way, he was still disqualified from being a candidate for any melanoma clinical trials. It was also discovered that the LLC may have weakened his immune system just enough to allow the melanoma to develop.

Because the FDA was very close to approving anti-PD1 and because my dad was not eligible for clinical trials, his doctor was able to start him on the drug as part of a program that allowed those otherwise disqualified from clinical trials to still receive the medication. Almost immediately, the growth on his back (which had grown very large at this point) began to melt away and eventually disappeared completely.

Fast forward to present day. My dad has been receiving 3mg of anti-PD1 infusions - now Keytruda - every 3 weeks for almost 2 years. He just had his 6 months scans and he is still NED. This summer, his doctor feels comfortable taking him off the Keytruda. During his time on Keytruda, with the exception of a loss of his thyroid function (easily treated with one pill a day), he has had NO side effects from the drug. He continues to bike, play tennis, and carry on with the active life he had prior to the melanoma diagnosis. Remarkably, there is also no sign of his LLC on blood tests!

I'm sharing my story now because I want to give others hope that positive outcomes are very real and very possible. The advancements in melanoma treatment have been nothing short of miraculous and they just continue to get better and better. Educating yourself to what's out there and working with specialists in the field who are at the forefront of melanoma research is absolutely key. No one knows what the future holds, but this much is true - advanced melanoma is closer and closer to becoming a manageable chronic illness and, quite possibly, an eradicated one.

 

 

 

 

 


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Anonymous's picture
Anonymous
Replies 12
Last reply 4/3/2016 - 10:45pm
Replies by: Maria C, Anonymous, Scooby123, Janner

Hello! 

 

My mother was diganosed last year with vaginal melanoma.  Had surgery, tried that chemo combo cisplatin/temodar, but it really messed her bloodwork up, so she had to stop.  We just found out it has returned in several places.  We do know that she is NRAS positive, but Braf negative.  Trying to do a brief eduation for myself before we go to her appointment tomorrow.  I want to be fully prepared!

My question is this, becasue she is BRAF negative, would she be able to take Keytruda? Or is that not an option because BRAF negative? 

Any information would be helpful!

Thank you!

 

 

 

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Bobman's picture
Replies 10
Last reply 4/3/2016 - 12:44pm
Replies by: desertsun, Bobman, Anonymous, DZnDef, Janner, JuTMSY4

I will have the sutures  removed this Monday  from primaries  8,and 9. Primary  number  7 was just a few weeks  earlier .  In the meantime,  I have several  new lesions  popping  up all over. Forehead , neck,back,legs,and abdomen . They all look as funky as can be...a few dark as coal. Even among my sea of a typicals the new ones stand out. I saw my primary  care nurse practitioner  on Monday ,who helps with biopsies  between  visits to the dermatologist .  I told her I  am now experiencing  fatigue  like I have never known .  She asked me what the oncologist  wanted to do,and I explained  that he said nothing  he could  offer until I reached  a different  stage. He did send me for a pet/CT scan  a couple  of years  ago when I was on about my 4th,or 5th primary , combined  at that time, with put me on the floor pelvic bowl  pain. I lit up both scans in exactly  the same area  of my pain. Was scoped front and back,with nothing  found,and in general  have only experienced  that same pain a few times since. She suggested  another  pet scan now.

I am totally  confused  as what to do here. Technically  I  am still stage 1,but something  is definitely  going on. I've  only  been  on this road for 5 ,or 6 years  now but the changes  on my body  are speeding  up. If I had Mets to anywhere  would  I  still  be throwing  out all these InSitu , and stage 1 lesions ?  My surgeon  actually  said to me after primary  number  7 that I was a ticking  time bomb. I actually  appreciated  the comment , as it seemed  real,and mirrored my thinking . Then a week  later we were  at it again , and most  likely  it's going  to be repeated  in a couple  of  weeks . .....wtf ?

Appreciate  any thoughts  on this you all may have.

Aloha , 

Bob

We are one.

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WithinMySkin's picture
Replies 14
Last reply 4/2/2016 - 7:58pm

Hello friends and fellow warriors! My onc just threw me a serious curveball, and I would love your input. 

Quick history: April 2015 diagnosed stage IIIB, 2.1mm primary on thigh, >2 mitosis, BRAF+, with ulceration.  SLNB positive 1/2 nodes. Decided to watch and wait. 

November 2015 found In-transit on leg. Stage IIIC. CLND showed 6/30 nodes positive, 2 "grossly positive" with extracapsular extension. Started Sylatron. 

March scan showed 2 possible in-transits on same leg, everything else clear. Watching the in-transits. 

So I've been watching the in-transits, and one has been growing. Just met with the Onc, thinking of dropping the Sylatron and going to Ipi at 10 mg. (Because clearly, the Sylatron isn't doing its job). But he really shocked me when he said we COULD leave the in-transits and go to the Ipi/Anti-PD-1 combo. I get the jist that he is being extremely liberal with the phrase "unresected" stage III, and giving me a balls-to-the-wall option. I clearly hadn't though of this as a treatment option, because I've only had leg and nearby node involvement so far, so this is a whole new world for me. 

SO, what to do?!? My options: 1- have the in-transits resected and go back to watch and wait. 2- go to Ipi 10 mg and have the in-transit resected 3- leave the in-transits, and go guns a blazing with the Ipi/Anti-PD-1 combo. Clearly, the side effect profile for the combo will be greater than the Ipi alone, and greater still than the watch and wait. I currently don't have any distant mets, and I'm still classified as IIIC, but clearly my Mel is knocking, and 6/30 nodes aren't good odds. I think the Onc is leaning towards being aggressive due to the pathology of my case. I'd love to get ahead of the beast, but is it OK to jump to the combo?!

This is a big fork in the road, and a big decision. Any and all input you all have, I'd greatly appreciate! Hope you are all kicking melanoma tail! 

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Scooby123's picture
Replies 14
Last reply 4/2/2016 - 5:19pm

Today I went to see a specialist in Gamma Knife. I was very nervous and not been sleeping very well since told I had a spot on brain. 

I saw 3 different nurses who explained every thing in detail which made me feel more confident in the treatment.

The specialist showed me my scan of my brain and where it was he said its small but I could see it clearly. It is located at the back of my brain on the right side. He did say that this treatment is good for tumours which are small. He also said when I have my MRI on Monday before treatment if there is any more they would also treat but praying there is not.

There has been no mention on me starting keydruda  after this , I did ask my nurse she said that due to me stable eles where and just this on brain this treatment is best to treat it and save keydruda for when I need it. I am Brad negative.

Do you guys think this is what you would do , the only thing worries me if more pop up on brain but I will have scans every 3 months but like some a lot can happen in 3 months as we all know.

will have to pray it does not develop any more on brain

hope you all ok and had a lovely Easter break.

scooby123❤️

 

 

 

 

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Angsta39's picture
Replies 1
Last reply 3/30/2016 - 1:06pm
Replies by: Bubbles

I had Stage IIIB Amelanotic nodular melanoma and was NED for 7 months. I went into see Derm in December and pointed ot two spots on my leg that concerened me. After biopsy, it was found that I have in-transit melanoma which moved me to Stage IIIC. By January I had 7 lesions and by February and my first set of T-VEC injections, I had over 30 lesions. 

Started T-VEC injections in February with only 7 injections. After waiting 3 weeks for next injections, doctor decided that I needed 20 injections because of all of the melanoma lesions that have popped up on my thigh. The 20 injections didn't hurt really because I have no feeling in my thigh from prior surgery, but the side effects afterwards were not fun. Within three hours of the injections, I was shaking uncontrolably, running a high fever and vomiting. I was not able to hold down any solid food for three days. I was worn out and sore for the rest of that week and finally got back to normal a week later. This time, I had 20 injections and I didn't even make it home before the shakes started. It was quite scary driving myself home like that, but I made it safely. Again, high fever, vomiting, and shakes but this only lasted over night and today I'm a bit wornn out, but not as bas as I was with the first 20 injections. 

The next time I go in, the doctor wants to do 30 injections. I am not looking forward to that at all, but at this point, I don't know what else to do. I have a new melanoma lesion pop up on my leg daily, it seems. Some have even come together to form one big one. I am just afraid with the waiting for them to be big enough to inject and watching them get so big (even bigger than originl melanoma) that it will end up spreading and I will become stage IV. 

I just feel like I am not doing enough to become NED from this disease. Any advice would be greatly appreciated. 

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A. A.'s picture
Replies 4
Last reply 3/30/2016 - 2:30pm
Replies by: A. A., Polymath, MoiraM

I've had a few melanomas now and with each suspicion there is some uneasiness tinged with fear but an internal dialog that overrides the worse case scenarios. Until this time anyway.

I saw the first mole in November 2009 and it was biopsied in December. Came back positive so was excised later that December and again by a wide margin in January. Caught it early and it was not a big worry. In fact, they didn't expect any more would appear. But three years later a new mole about two inches from the first appeared. It grew faster, deeper, darker. A few excisions later, it was deemed solved. Several moles since have been precancerous, but not a worry. So, after being diligent through 2015, I slacked on checking for moles after my visit in August 2015. A factor was that I got pretty sick starting in September with an upper respiratory cold and have been fighting one bug or infection after another all winter long. So I slacked.

But yesterday the Spring weather came out and I decided to take care of getting my legs ready for skirt season. That's when I saw them. One small but very ugly mole about half an inch from the second site. And a tiny black freckle two inches from that, and 8 more tiny dark black freckles, mostly on the left leg (where all previous melanomas and precancerous moles have been) but also two on my right leg--one of which is exactly mirroring one on the left leg. I then did a thorough body check and found a new, ugly, thick, raised mole on my labia that wasn't there last summer. And half a dozen small, flat, raised moles under my breasts and one beside my belly button. None of this was present last August when I had my last exam. 

And now I am beginning to question the underlying reason that I have had one bug after another since September, and the painful lymph nodes in my groin that were just on the right side in November through February but became both sides and more painful since the beginning of March. And the steadily increasing tenderness of my left breast. And that I haven't recovered my lungs full function since September.

And I can't quiet the worrisome voice anymore. Because my appointment that was scheduled for April 22nd was bumped to right away when I told them about the new moles. My instinct on whether a mole was a problem or not has so far been 100% accurate. Maybe I am being a worrywort but I just can't get my mind to find a way to not think, "This is it kid. You're done for". And the next thoughts are immediately, oh my poor girls, and their dad, and my darling dog. And I won't see my eldest graduate college next year, nor my youngest start college in the Fall, nor them get married, buy a home, have children. All the civic projects I am building in my community for the arts won't come to be. And all the children who will be less engaged with the arts because I can't make these projects materialize without me. And how visual art saved me as a child during difficult times and circumstances and how I wanted to create a legacy of beauty, expression, access. But I spent too much time doing unimportant things. And now time is up.

I do hope I am wrong. I hope that next week I find instead a renewed energy toward those things I will be sad to have not built and seen. But for tonight, I cannot sleep.

 

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gale123's picture
Replies 2
Last reply 3/30/2016 - 9:52pm
Replies by: BrianP, WithinMySkin

Hello,

my mother got yervoy and opdivo in combination 7 days ago but she got pneumitis as side effect. She is in the hospital for the last 4 days and getting oxygen. Has anyone any experience with this side effect and how long it can last? She got a lot of steroids but i dont see that she is bether.

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/30/2016 - 8:06am
Replies by: JuTMSY4, jennunicorn

Hello, I am new to this forum and was wondering if I could get some advice. I noticed a mole growing a couple of months ago and didn't really think anything of it. It is now a bit bigger and is starting to worry me. I know the best course of action is to see a doctor but I was wondering if anyone could tell me how serious it looks/if I should see one asap as opposed to my next checkup.

 

Here is a picture, zoomed in. Thank you for taking the time!

http://postimg.org/image/5i8kv06rv/

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Christine.P's picture
Replies 2
Last reply 3/30/2016 - 7:21am
Replies by: Anonymous, jennunicorn

Does anyone have a favorite sunscreen to recommend? I can't seem to find one with all the right protections that feels and smells nice. Spring is coming and I want to get out of the house and won't dare without my sunscreen. 

Ideally, I'd like to find a light, soft lotion with a shea or coconut scent (or at least one that is not fruity or perfumy). 

Christine P. 

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Hi,

Melenoma runs in my family (my mom passed away from it when I was 12), so I've always been concerned that I'd develop it. I've watched my moles closely and I noticed one in particular that my dermatologst had said to watch had changed.

I went back to the dermatologist to have it looked at and sure enough she said we should remove it and send it in for a biopsy. I'm not sure if she did a shave or an excision (I didn't watch or ask because it kind of freaked me out). Anyways, I got a call back today and the results came back as severely atypical and they want me to come back on Monday to remove more and send it in for a second biopsy.

Of course I'm concerned due to my family history of it, but do I have anything to really be concerned about? Is it possible that this is a melenoma?

Thank you!

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WithinMySkin's picture
Replies 2
Last reply 3/29/2016 - 12:21pm
Replies by: jennunicorn, Mat

Jimmy Carter seems to be raising awareness (and money) for Melanoma, whether he wants to or not!

https://www.washingtonpost.com/news/to-your-health/wp/2016/03/29/bloombe...

WithinMySkin

www.Withinmyskin.com

 

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Tamlin's picture
Replies 2
Last reply 3/29/2016 - 11:58am
Replies by: JuTMSY4, Anonymous

 

Re: Lump in groin 

Tamlin -  (3/29/2016 - 8:43am)

New update: consultant called today to say that although nothing else seen near enlarged lymph node which is a good sign, he has referred me to have lymph node removed and tested for melanoma. I'm starting to get a bit scared now. To meet consultant next Tuesday so he can go over the operation with me. Does anyone know if it's safe to fly after this operation as I'm due to go on holiday in May? How long were you in hospital and how long for recovery? 

Thanks 

 

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Charlie S's picture
Replies 13
Last reply 3/30/2016 - 5:59pm

I guess for me, it is never going to end; maybe that is good maybe that is bad.

1987 Stage III unknown primary, hot lymph nodes , surgery and silence until 1996 then recurrence to Stage IV.  

Slew of surgeries, interferon, interleukin, seven recurrences through 2008; then quiet again.

And now, 29 years later, here we go again.

Swollen belly, big leg pain and bad scan.

I kind of thought (with my fingers crossed) that maybe I had paid my dues; but just saying so does not make it so.

I know the rules say no swearing...........................but I am so fucking tired of melanoma

 

Charlie S

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