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.

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It seems to be typical that melanoma patients get regular PET scans every three months (then decreasing to 6 month intervals). I was just turned down by my insurance company for a scan 4 months after my resection surgery. Is this typical to get declined by insurance for a proactive regular scan?

Can anyone provide insight on how my Oncologist can get the scan approved by insurance?

(my insurance is good, Aetna Signature PPO, and has never turned anything down until now)

Thank you!

Danny

Diagnosed Jan 2017 (unknown primary). Surgery Feb 2017 (Speech impediment resulted from ad-hoc submandibular gland removal during CLND). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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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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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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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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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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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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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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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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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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Sdsmith44's picture
Replies 11
Last reply 5/16/2017 - 4:43pm

I finished ipiluminab 10mg in March with mild side effects (mucosal inflammation and bleeding, swollen lymph nodes, swollen tonsils, shooting temple pain) then two weeks later developed hyperthyriodism. After a series of test it was determined it was Graves' disease. My ENDO said he has never came across in his medical literature and connection between ipiluminab and graves. So now I'm at a decision point to treat the graves. I'm considering radioactive Iodine treatment to kill most of my thyroid. This is all because anti thyroid medicine would make me non deployable in my job field in the Marines for two years and my job means everything to me. Any other cases of graves in this forum? Any thoughts?

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Ridingaroundwith27Jennifers's picture
Replies 7
Last reply 5/16/2017 - 2:17pm

Hi All,

I have two daughters.  The younger one is in kindergarten and the older is in the fifth grade.  My husband and I weren't sure how they would react to my being sick.  When we went to parent/teacher conferences we decided we would mention it to their teachers.  My daughter's kindergarten teacher looked me in the eye and asked me if I was dying.  I didn't know what to say.  Honestly I never imagined that she would ask that.  My response was "well not today".  She then asked me again.  My husband just looked at me with a shocked look on his face.  I said "I hope not but we will just have to see".

I didn't expect that response from her teacher.  I think I was looking for support for my daughter in case she needed it.  I don't think we will be getting it from this teacher.  As it is I think it is very difficult to talk with a five year old about this situation.  I should say that my older daughter's teacher was absolutely wonderful and very supportive.  

Does anyone have suggestions for handling these sort of strange experiences?  Any tips on talking to the little ones about the cancer journey without freaking them out?  We've just kept it simple telling them that I'm sick and seeing doctors to get better.  They know I had brain surgery but don't know that it's cancer.  We though the word might scare them.  They don't know it is stage IV.  I feel like I can't tell them how serious it is because I don't know how serious it is.

Thanks for letting me vent.  

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Christine.P's picture
Replies 23
Last reply 5/16/2017 - 11:02am

So I just found out that I do have the BRAF mutation after my initial diagnosis/testing in 2015 said I was wild type. Because of this, I never really paid much attention to information about the mutation since I did not have it. Well, now I have all sorts of questions. My doctor is recommending Tak/Mef since I have recently failed ipi/nivo followed by nivo (four new tumors in my leg, hip, and lower back). 

I tried searching this site for posts related to BRAF and Tak/Mef, but found it hard to wade through all of it. Does anyone have links that I might find useful? I have to admit I've been reading about side effects, and - while I know they are worst case scenarios - I am a little scared. I had few side effects with just nivo (mainly fatigue, headaches, and achy muscles and joints) so I'm hopeful I will also suffer few side effects with the new drugs, but the chances of new cancers, heart failure, etc. is pretty overwhelming. 

If anyone would care to share their own experience with Taf/Mek, I would love to hear how you fared on the drugs. 

Many thanks for your continued patience with my questions as my disease has changed and progressed.

Christine P. 

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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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mrsaxde's picture
Replies 5
Last reply 5/16/2017 - 7:19am

If you've seen my last few posts you know that my latest scan, a PET done in March, revealed that Keytruda had gotten rid of my lung nodules and my skin spots, while still visible, were no longer active. But I have lymph nodes in my chest that are now positive after being confirmed by biopsy. Plan A was to start radiation, and afterward resume Keytruda.

On Wednesday we shifted to Plan B. I saw Dr. Sharfman at Johns Hopkins. We discussed whether my oncologist should resume Keytruda while I was getting radiation, to try and take advantage of the "synergy" that has been discovered between radiation and immunotherapy. But he also mentioned that he had asked his research nurse to look for trials that I would fit into.

Shortly after we got home Dr. Sharfman called. He offered me a spot in a trial comparing the effectiveness of a new immunotherapy agent, known as "anti-LAG-3" at the moment, when given alone and in combination with Opdivo. He said he thought my prospects were better in the trial than with radiation and Keytruda. So I told him that if that was his recommendation then that is what I would do. Now they're doing that time honored American tradition of waiting for my insurance to clear me, so I can

I was wondering whether anyone else here is participating in this trial, at JHU or elsewhere. If so, what have been your experience with side effects and such? And more importantly, is it working? The nurse I spoke to today told me that Dr. Sharfman recommended this because there have been several melanoma patients who have gotten good results.

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TexMelanomex's picture
Replies 4
Last reply 5/16/2017 - 7:16am
Replies by: raun cesar, Anonymous, Christine.P

Hi guys! Its been awhile and I hope this finds you all kicking some melanoma butt! I'm still healing from the skin graft (I had a setback when the donor site opened WAY up and it was full thickness graft, it was infected so the decision was made not to close it, a 4 inch wide by 1.5 inch thick cut takes a while to heal without sutures!!). The actual graft on my head is still healing but getting close to being done with it (I think). I notice that it is shrinking and what started out about the size of a silver dollar is now about the size of a quarter.

Since the WLE, SNLB, and graft I have been assigned to Dr. Amaria at MDA for medical oncology although at IIc there were only two options: Interferon Alpha (no thanks, and Dr. Amaria concurred) and a trial that I was going to miss due to time since surgery and when the study starts.

The genetic testing has been completed and I am BRAF positive, so if recurrence happens I will be armed with that knowledge (actually MDA will be armed with it).

No real news on this end except I apologize for being away from the boards for so long. I have been living life and trying to enjoy every day. This brief journey definitely made a mark on me (and not just the scars!) so I have been reprioritizing many things in my life to slow them down a little, relax a lot, and just take it all in.

My first round of post-surgery scans (CT and MRI) are in about 3 weeks so I'm hoping for the first all clear of what will be many, many scans over the next several years.

Fight on Warriors!!

Tex

Tex

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