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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Bradley75's picture
Replies 10
Last reply 5/20/2017 - 10:24am

Just wanted to share some good news.  It has been a long time since I have been able to say that.  I had one dose of the combo back in January and the side effects wiped me out.  Once I was off steroids and beta blockers, they decided I was stable enough to try Pembro.  Monday the 15th was three weeks after my fourth dose.  I had my first scan and MRI since the December scan that moved me to stage 4.

The results indicate a 30% reduction in the size of the tumor on my spine, considerable improvement to the right lung, no new growth, and two other spots remain stable.  I am not 100% sure how to quantify the considerable improvement to the lung comment, but it sounds good to me.  All my blood came back within  the norms so I received my 5th dose of Pembro on Tuesday.

I wanted to share this as hope for those that can't handle the combo.  I was pretty doom and gloom when they told me I couldn't continue with it.  There is so many success stories with the combo that I thought what is the point of trying Pembro.  Keep fighting even when you feel there is nothing that can help.  I am by no means in the clear, but at least I can enjoy the next three months until my next scan.  I can spend the summer with my wife and kids knowing, at least for now, we are winning the battle.

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pup's picture
Replies 2
Last reply 5/20/2017 - 8:25am

HI all,
After reading many posts everyone here seems to be a closely knit group. I have many questions that I have not been able to answer from diligently surfing the web. Hopefully I can get the answers I’ve been looking for.

First my Info:
I have stage III-B (diagnosed 2012) & have had 3 surgeries so far (since 2013) to remove tumors localized on the inside of my left thigh near my knee. I've also had chemo/interferon (2013)to stimulate my immune system. My surgeon says I've already got the maximum benefit.
Now I'm facing Superficial groin node dissection as there were cancerous nodes removed during my last surgery- Apr-'17. Matter of fact, in all my previous operations a few lymph nodes were removed with very little pain.

After the surgery other treatments coming up include “ILI--Isolated limb infusion” & “BRAF targeted therapy ”. Maybe someone here can share what they know about these procedures.

 

Now for the questions: ???????????

When you have all the nodes of the left groin removed what type of pain & other symptoms will I be facing? Can you get around? Is the drain uncomfortable? How long before I can drive? (I live alone)
I've been told that I must have a vacuum pump to drain fluid. And a nurse will be needed daily for a short time to do something?. Not sure what 'something" is.
And in the long term.. (the biggie)  Without those nodes will my leg/foot be swelling because of their loss?  Is there other side effects long-term.

Thx ahead of time

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Alce123's picture
Replies 1
Last reply 5/18/2017 - 1:20pm
Replies by: Prd10

I have a quick question.

I had a WLE with skin graft on my ankle on 07/27/16. I'm planning on covering it as much as I can when in the sun but there are times when that may be difficult (ie swimming, running or even wearing a long skirt). I sent a message to my surgeon asking the extent to which it should be covered but his PA responded with a very vague "be diligent about covering you graft when in direct sun."

Does this mean pants and wraps? What has been others experience when grafts and sunlight?

Thanks!

Austine

Alc

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zfishberg's picture
Replies 7
Last reply 5/19/2017 - 8:05am

Hello!

My husband started the ipi/nivo combo 2 weeks ago.

initially - no major side effects other than fatigue.

in about 8-9 days he started feeling soreness in this troat.

The pain and soreness keep getting worse.

Sometimes he complains that even air when passing thru the throat irritates it and causes pain.

Did anybody experience this kind of symptoms ?

 

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Girlfromohio's picture
Replies 6
Last reply 5/19/2017 - 5:26pm
Replies by: Anonymous, Jamie1960, UBContributor, Janner, betsyl

I do not have melanoma. I am, however, terrified of getting melanoma. I have many many moles and have recently started getting skin checks in the past couple years. I'm 34, btw. Because I am so paranoid, I had a full body check in February and 1 biopsy (came back benign). I was back at the derm last week to look at a couple more spots and she wasn't concerned about them. Then today, I notice a new spot on my face. Mole, freckle, sun spot, I don't know. It's totally irrational to think a melanoma could pop up that quick so soon after a derm visit, right?? I feel like I am so hyper aware now I notice any new spot that surfaces. Should I be running to the derm again with this?? I honestly feel like I'm going crazy.

also I hope no one gets annoyed by these posts from people who don't even have melanoma. I lurk here often. 

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UBContributor's picture
Replies 8
Last reply 5/23/2017 - 9:39am

Forum folks! This is my first summer with MM, live in desert like, extremely sunny place, and seeking your advice how do you avoid sun? I realise no more beach or summer hiking for me in my life, I used to love doing this.  But what about driving? walking in the city to and from my work? Have thrown away all my shorts, now wear only long pants and shirts with long sleeves, it this enough? I read on a different site one guy complaining he wore always hoodies even  in hot summer, but it still came back very soon, scaryng .... so, how extreme the sun avoidance should be? 

George, 27 yo, stage I B, Nov 2016 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/17/2017 - 2:52pm
Replies by: Anonymous, Bubbles

Quick background, diagnosed stage 4 in 2014 unknown primary.  Braf neg.  Have done IL-2, Yerovy, Nivolumab, genetic trial of palbociclib and most recently trial of glembatumuab & varlilumab.  Was considered stable on recent trial until two weeks ago when scans showed small brain tumor. Now I'm disqualified for the trial.   Will have sterotactic surgery tomorrow to treat the brain tumor. My question is now that I have the brain tumor, will I qualify for any trials, and if not what is next plan of action?  Thanks for any input.

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Aaron's picture
Replies 6
Last reply 5/19/2017 - 4:18pm

MY story refresher:

NIVO/IPI combo

1st scan everything reduced by 1/2  

Pituitary enlargement and vitiligo develops and  put on Prednisone complete only 3 of 4 Ipi and continue on Nivo  

2nd scan no growth no shrinkage; stable  

My third scan... I originally had 20+ tumors and now only have two measurable tumors left and they are shrinking!  

Cellutlitis outbreaks force me to skip a couple treatments

4th scan and not quite a full year (about 11 months) after initial combo treatments started... My two tumors are shrinking.  They shrunk by about .5 mm or 25% depending on how you want to look at it.  Was hoping for NED this time around but still shrinking and no new growths is still great news.  

 

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jenny22's picture
Replies 9
Last reply 5/22/2017 - 11:34pm

Hi-

I have been hoping we might hear from jamie and or Josh.....

I sent jamie a PM and have not gotten any repsonse...

Has anyone been in touch with or heard from either of them?

Last from josh was he was recovering from TIL and feeling pretty weak....and last from Jaime was from his wife, when were they are at MDA.....nothing since from either of them that i have seen.

Hoping they are ok.

Anyone know anything?

thanks,

jenny 

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I am 54, fit, first timer, 3B; recently fully resected ulceric 2.5cm mid back tumor that showed macro to several of one set of lymph nodes. That removal is next week, and per PET/CT and MRI nothing else is showing up.

My oncologist was very straightforward about going on yervoy, and much of what I am getting in feedback is pretty positive about that prospect, given the newness and initial shock when I got prognosis numbers after surgery.

I'm glad for the sense of rapid and recent progress that provides so much encouragement for all of us. That an option like yervoy exists.

But, in spirit and attitude, I think I would not be intimidated by being part of the next wave of research, especially where there is possible reward as well as possible risk.

So I am asking if you can speak to:

1) making the decision to try to get into a trial when that is not the first "go to" response (my oncologist wasn't expressly negative, but didn't really pick up much on my interest), and/or

2) the general proposition of "fighting back hard by attempting to volunteer for the new weapons testing brigade." Even when you are not expressly in the "need to do this" category vis a vis clinical participation.

I wonder if my new found sense of mortality hasn't made me actually a bit LESS risk-averse in this regard.

Also, can anyone say with the anecdotal cutting edge knowledge of recent experience; "this is where the smart money is going - get on a combo therepy instead of last year's new breakthrough" etc. etc.

Pardon my somewhat flippant language. If my characterizations or set up are the problem in this analysis, criticize freely.

And thank you in advance.

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Shaneswife's picture
Replies 2
Last reply 5/16/2017 - 9:00pm

Well we saw the oncologist today for Shane's results. It was a mixed bag of news. His lung and liver mets have all shrunk by a few millimetres so that was good news. His brain however is having such a mixed response. Some tumours shrunk and some stayed the same but he has 10 new tumours that are fair sized. So the doc is consulting with another specialist to confirm that they can't do the radiation to the brain. Too many mets for the hospitals protocol. So he's going off targeted therapy and switching to pembro. And his spine tumours haven't changed but they are going to radiate the one at L4 as it's causing a lot of pain. 

 

I just just wish I could understand why the mixed response in the brain. Shrinkage stability and growth. It just doesn't make sense to me given the mechanism of targeted therapy. Sigh. 

 

The next biggest hurdle is that he's stuck on steroids so getting in pembro and having it take the brakes off a suppressed immune system who knows how that will work. The inc said he's done it and see the pembro fail and seen it still work so it's anyone's guess now as to how this impact him. 

 

And if hes not part of the 30-40% of pembro responders his other cancer spots will start growing again because of no longer being on targeted therapy. and it could hasten his death. 

 

So so many decisions to be made. 

 

Thanks for listening to me. 

 

Janis

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Scooby123's picture
Replies 4
Last reply 5/17/2017 - 1:56pm

Hi all,

Hope you are well,

Hoping some one might help with question. Had my scans results in my chest lymph nodes there are 2 enlarged nodes. one is small other since dec scans increased by 7 mm. My consultant called today to discuss options. Due to i am stable eles where liver ,lungs, brain clear now he is ordering a Pet scan to see if it lights up with cancer due to lymph nodes can enlarge due to other reasons. Anyone had a pet scan rather than the ct they use a special dye and if it is cancer then it lights up if i am correct.

Anyone with info much appriciated.

Scooby

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RitysMom's picture
Replies 1
Last reply 5/16/2017 - 9:18am
Replies by: Janner

After Kristine's diagnosis last August, I made my other three kids begin seeing dermatologists. My 20 yr old son recently had two moles biopsied. His dr called today and said that one was abnormal...it's not cancerous, but if left it could become cancer. They had done a punch biopsy and didn't get it all, so they are having him come back in to remove the rest.

I know it isn't cancer, but is it possible to request a scan based on the family history? Kristine never had a scan after her primary was removed in 2013 and I can't help but wonder if it would've been caught sooner had she been getting regular scans. 

My oldest daughter also had a mole removed that came back as "changing cells" and they basically said the same thing, that it could become cancer if left alone.

So basically my stress level is way up there. I want to know what we can do to be proactive and hopefully prevent another devastating diagnosis.

Cindy 

Mom of the beautiful Kristine

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messedmelanocytes's picture
Replies 1
Last reply 5/15/2017 - 10:29pm
Replies by: jennunicorn

I'm wondering if there is risk from UVA UVB rays through the windows in my car. Does anyone know if typcial glass windshields block these harmful rays? Should we be taking precautions when driving? There is also the sunroof glass, so if there is risk, then there is a lot of rays from the sun that can find you while driving, in a busy urban centre, we spend a significant amount of time behind the winshield commuting. 

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messedmelanocytes's picture
Replies 1
Last reply 5/16/2017 - 5:00am
Replies by: Scooby123

Do anyone  know of any connection between HRT and an increased chance of MM? I tried to see what was on the web and there isn't much but what I did find says there is not a proven connection. So, is MM considered not a horomone based cancer?  Has anyone recieved advice against taking HRT if they have had MM?

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