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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iskitwo's picture
Replies 2
Last reply 8/2/2017 - 7:36pm
Replies by: geriakt, jennunicorn

I was DX with Stage 3A melanoma last year in November. After talking with Melanoma Specialist (a couple of options)  I decided to watch and scan every 3 months. Now 9 months in to this journey the insurance has decided that scan for stages 2b to 3b are only necessary every 6 months. I am feeling very frustrated because I may have chosen a different course of treatment had I known that the insurance got to decide when I get scans rather than my doctor.  Is anyone else having these issues? any advice? I am currently using my local melanoma oncologist....would I get better results using my MD Anderson Team? I had been trying to stay close to home for scans and only using MD if something came up.

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betsyl's picture
Replies 19
Last reply 8/2/2017 - 6:42pm

Greetings! I have a question that has been nagging me for a while.

According to cancer.org:

"The numbers below are among the most current available. But to get 5-year or 10-year survival rates, doctors have to look at people who were treated at least 5 or 10 years ago. As treatments are improving over time, people who are now being diagnosed with melanoma may have a better outlook than these statistics show."

"Stage IV: The 5-year survival rate is about 15% to 20%. The 10-year survival is about 10% to 15%."

https://www.cancer.org/cancer/melanoma-skin-cancer/detection-diagnosis-s...

So, my question is when will we know the *new* 5-year and 10-year survival rates now that more effective treatments are widely available? Keytruda/Opdivo were approved in the last few years, right? So that means the new "official" survival numbers will be available in the early-to-mid 2020s? And, of course, the "new normal" is a moving target as further advances continue to be made.

With all this in mind and given that we already have some data on response rates and durability, are there any credible estimates for the new 5-year and 10-year survival rates?

Cheers and best wishes,

Betsy

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jazztubs's picture
Replies 6
Last reply 8/2/2017 - 1:57pm

Hey Everyone,

Well, after an MRI, it appears that I have 2 new brain mets and an older one that is starting to get bigger. They are all really small.  I've had 3 cranies at this point.  Was about to start Keytruda, but now multiple docs are recommending whole brain radiation as a first step and then Keytruda.

I'm really struggling with this since I believe WBRT is a way to close lots of doors including the big one...life. I'm 41 and healthy, minus my melanoma issues.  Had 100% response to il-2, survived the cranies for brain mets, had a colon resect...etc.  I feel like to starting Keytruda to see if it works (along with very close monitoring) might be the way to go and the WBRT if things aren't looking good.  I just don't know.

Are there any experience with WBRT that are positive in outcome?  I do hear that it can raise the efficacy of Keytruda through immune response with the radiation.  But, I also hear folks are lucky to get through it comfortably and then live much more than a year or two.  

Anyhow, would love to hear anyones voice on this one.  I'm feeling awefully empty right now after this long 4 year battle and running into what feels like the imminent reality of the end.

Ugh.

Ben

Benjamin

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jc2dad's picture
Replies 6
Last reply 8/2/2017 - 8:15am

Will start fighting back this disease on August 4th (medical anyway...already started on the spiritual aspect). Meet with the surgeon and oncologist and then a battery of pokes, prods, and scans. Does anyone have any tips for navigating MD Anderson or recommend lodging? They told me to plan on being there 5 business days

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Anonymous's picture
Replies 10
Last reply 8/1/2017 - 9:21pm

Has anyone on here had to request Patient Assistance from Bristol Myers Squibb? We are in the unfortunate position of having to do so. We have been waiting for over a week, and are anxious about our chances, We are well below the income requirements, but it is my understanding that there are no guarantees. My husband does have Medicare, but unfortunately, his oncologist requires a little over $6000 as his part before they will begin treatment, and we don't have it, nor have any way of getting it. It would really make us feel better if someone here might be able to share their experiences with Bristol Myers Squibb or any other drug company?

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 8/1/2017 - 8:10pm

Here I am almost one year from my Stage IV diagnosis.  I met with my oncologist today.  Overall the outlook is positive.  I've only got two tumors (if no new ones pop up).  My big question was how long would I stay on Nivo treatments.  I'm tired and just want to stop.  I have a CT scan of chest/abdomin/pelvis on August 14th with more blood work and nivo treatment.  The plan is that if the scans show no tumors and the next MRI shows no tumors then 6 more months of treatments.  If CT still shows tumors then another 2 years of treatment.  The most interesting thing she said was that treatment options are changing repidly and that this tentative plan is based on data that is a month old.  So the plan may change as new data comes in.  Overall it's good news.  I just need enough energy to keep on.  I'm trying to balance low energy levels, work, kids, housework.  The thing that isn't on the list is exercise which I need to somehow fine the energy to fit in.

And let's not forget the seizure driving ban.  Can't wait for that to be lifted.  Has anyone else with mild edema from brain tumor removal have minor seizure activity and get put on Keppra?  How much and did it help or just make you drowsy.

Best,

Jen

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guynamedbilly's picture
Replies 2
Last reply 8/1/2017 - 7:02pm
Replies by: Anonymous, Linny

I don't have too much to say, but it just seems like just sharing my story could be helpful to myself and others. I'm a 33 year bachelor. I have never had any major medical problems, or even bad acne.

I had a bump on my scalp for a few years. My local family doctor said it was a cyst and removed it, saying that cysts often recur. They never sent it for testing despite saying they would. I went to a different clinic about a year later thinking it was the cyst recurring again, and they said I had a lipoma. Again, it wasn't sent for testing.

About 8 months later I see a Dermatologist who cared and I had a 15mm Clark5 melanoma, and no idea how long it had been there.

My MRI and PET scans were both clear, and I've not had any other physical signs.

I just had the WLE and local lymph nodes removed 2 weeks ago and the first, right occipital node had a small micromet. None of the other nodes had any. After surgery, my neck was very painful and my donor site was too, but the wle site wasn't too bad. I could only sleep on my left side. As of now, I feel very little pain and the graft is recovering well.

My first meeting with the medical Oncologist is late this week and I'll see what trials I can get into then.

I have no idea what my prognosis is yet, but I know that the odds statistically aren't good.

It's been an incredibly stressful month and the first two weeks I was consistently depressed. Eventually you have to let go of that and take the treatment one step at a time. That was very hard for me to do because I've always liked to feel in control of my life. But I can't contol it all, so I intend to make what I can control the best it can be. My attitude and my relationships. Cancer may end up stealing part of my life; I'm not going to give up the rest of it by constant worry.

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Armpit

James Gregory

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Staywell's picture
Replies 4
Last reply 8/1/2017 - 3:01pm
Replies by: Staywell, Anonymous, Cindyco

I'm new in this great forum, I need urgent help, please . Diagnosed with a MM Mucosal melanoma in January, apparently St 1 ,  at the first scan  it was reported there were several micronodules to the both lung bases. 

I' m really concerned because I don't know a way to determinate what nature are this micronodules.

Please anybody knows the best lung specialists that could have had more experiences in diagnosing that condition ? Does it exist two or three criteria do discriminate if a a micronodule is benign ?

Thanks for your answers .I wish you all be well. 


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Anonymous's picture
Anonymous
Replies 9
Last reply 8/1/2017 - 2:26pm

For those with sub-q tumors... did they move around under the skin? Or were they fixed in place? Could you always feel them? Or did it depend on what position you were in? Are there other growths under the skin that move around?

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MelanomaMike's picture
Replies 12
Last reply 8/1/2017 - 10:53am

Hello brothers & sisters of the Melanoma bug, im Mike and i stumbled upon this site thank God, its been a chalk full of info so far. I was first diagnosed in 2008 stage 3b all in my left leg, since then ive had 6 surgeries one being in my Lymphnode area {left groin} where it had traveled to. We spoke {my team} of chemo but decided on just surgeries. My last surgery was June 29th 2017 {surgery #6} also in my left leg {shin} apparently its DNA wasnt related to past Melanoma tumors, a new breed of sorts, and some sad news, my last PET/CT revealed a spot in my Right lung {lower lobe} & a smaller one in my Left. I see an Oncologist tomarrow morning for a second opinion {other then my primary one} out in Riverside Kaiser to discuss a game plan. Ive already spoke with a Thorax spc. of course hes talkin surgery, a brutal one in comparness to my leg ones, braeking rib bones, deflate lung, poke & feel around for the tumor and finaly "snip"..yixe!!!..so, i wanna get a second opinion, im thinking hell, itr keeps coming back now, Chemo just has to be my answer right? surgeries seem to average 2 to 3 years then comes back. Now that its broken through my {what i call} Lympatic Road Block, and now in m my lungs, i think its time. Ill post what happens tomarrow after my visit, im very glad i met you all here at MRF {MPIP}...Feel free to ask questions or give insight, im seeing alotta good things about Yervoy so, i will ask about that...Thanx...Michael Pruitt Van Nuys Calif.

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thinkingofu's picture
Replies 14
Last reply 8/1/2017 - 10:30am

Hello everyone

Just wanted to share some news with you. Thanks to your help and so much very useful information you have provided us with, doctors have agree to start my mom on Opdivo/Yervoy protocol. They will start with 4 IV doses of both, then move to Opdivo-only phase. Still waiting for BRAF results, so they said we may move to inhibitors after that. 

My question is this. If it is not too much trouble, could you please share your personal experience with the protocol? How bad were the side effects? My mom cannot sleep and is crying all the time saying if it is not melanoma then side effects of treatment will get her. 

I do not know how to help her. Maybe some of your experiences with side effects will help. 

Everytime she reads your posts here she feels better. 

Thank you so , so , so much xxx

 

 

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baesill's picture
Replies 4
Last reply 8/1/2017 - 10:27am

Hello,

I got a really high fever of 104.3 four days after starting Tafinlar and Mekinist. All tests for infections came back negative. I started a medrol dose pack and was told to stop the taf/mek for 48 hours. Still getting two (more mild) fevers a day. If you went on a break with these medicines because of super high fevers, how long until fevers went away? 

Thanks!

Monica 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/1/2017 - 9:53am

General question here for the MPIP community. After completeing a year long clinical trial on adjuvant pd1 therapy, or event ipi has any one here been able to enroll in a secondary trial?

I know it sounds like overkill if you are disease free, but is this reasonable?

So far I've received 12 doses of pembro and am currently disease free (knocks on wood) for resected stage 3b disease. 

Is it to premature to be thinking of a second year? Has anyone been down this road and asked their oncologist, or would it be worth asking mine to see if I could qualify for a second year of pembro

off trial?

I am tremendously grateful to be in the position I am, but am the sort of person who likes to always be a step ahead. 

Best to you all, any responses would be greatly appreciated. 

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jc2dad's picture
Replies 8
Last reply 8/1/2017 - 9:04am

I had a black line that appeared in the fingernail of my middle finger of my left hand about 18 months ago.  After a couple of months the discoloration spread and the nail split.  I made an appointment with my PCP and had him examine it along with some stomach issues I was having.  He said the nail was nothing to worry about, probably fungal or damage to the nail bed from trauma (of which I had none).  Long story short after complete deteriation of the nail bed and a raised ulceration of the skin below the nail bed and two more examinations by two different doctors (both who said it was an infection at best and prescribed anti-biotics) over the next year, I finally visit the ER because of the pain and bleeding in the finger.  ER doc immediately refers me to dermatologist and get biopsy the same day.  Preliminary pathology came back as malignant melanoma, blood work shows melanoma is already in my blood system, so Dermatologist referred me to Md Anderson, said the mitosis shows very agressive.  Don't know if it has metastized anywhere else yet, but definitely having symptoms of metastizes in other areas.  39 years old healthy with 4 small kiddos that I am raising by myself, so I have to beat this.  Have an appointment with Dr. Michael Wong at MD Anderson on August 1st.  Sorry I don't have more information at this time.  Any advice would be appreciated.

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