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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J.bun's picture
Replies 1
Last reply 5/20/2017 - 8:31am
Replies by: UBContributor

It has now been 6 months since my advanced melanoma diagnosis, and definitely filled with some sharp rocks - but also a calm(er) current.

After a stint in the hospital where I could barely breathe or walk upon my release in January (allergic reaction to Zelboraf), earlier this month I took a Caribbean vacation with my DH and could keep up with all the activity. (Yes, I was covered in sunscreen, a floppy hat, and UPF clothes ....when I came back, multiple co-workers said in the horror "you don't even have a tan"). 

The last 6 months have been challenging - working through 3 drug combos - but I just had my 3rd scan and am thankful for the results:  my lymph nodes are all clear!  ...Yet, there are two small "areas of activity" on my spleen that have showed up... my doctor is not too concerned about them given what appears to be a complete response, but I cannot let out a total sigh of relief.  And it seems it is not too uncommon for nodules to come up that are indeed, 'nothing.'

Nonetheless, the plan had always been to get the max benefit from BRAF pills and then move to pembro/Ketytruda for maintenance and monitoring.  So, that is where I go next... and hope this activity in the spleen is nothing or that Keytruda will nail it. 

My thoughts and support are here for everyone.

- J.

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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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CindyCo's picture
Replies 1
Last reply 5/19/2017 - 9:16pm
Replies by: rabbits68

So after 2 cycles of Abraxane (which my mom tolerated pretty well and didn't even go bald), we just found out that my mom progressed again.  She now has four lesions on the liver, and some increased lung nodules.  Dr. Ribas at UCLA recommended that she start clincial trials, but due to her previous toxicities to immunotherapy, the only trial that she qualifies for at UCLA is for RGX-104. 

We then went to Dr. Hamid at the Angeles Clinic and he offered us IMCGP100 (which is offered at UCLA as well, but I think Dr. Ribas is more conservative about what he offers us).  It's currently being amended to allow for mucosal melanoma, but it has had some good initial results for ocular melanoma.  We do have to wait for the trial to be officially amended (does anyone know how to find this out?), which Dr. Hamid hopes will coincide with the washout period for the Abraxane (2 weeks to go).  Dr. Hamid has already cleared my mom's previous toxicities with the medical monitor, and he doesn't think it will be an issue (he was even willing to try another dose of Keytruda).  Dr. Hamid has really been an amazing advocate for my mom and we are so glad we are doing the trial with him.  If anyone is in this trial, I'd love to hear more about their experience. 

Dr. Ribas recommended that we try Sloan Kettering and MD Anderson for other trial options, and we are in the process of looking into those just in case IMCGP100 becomes not an option for us.  Interestingly, he told us not to volunteer too much information about her toxicities when she goes elsewhere. 

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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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MovingOn's picture
Replies 2
Last reply 5/18/2017 - 11:35pm

I am facing the situation where my side effects from Ipi/Yervoy are being suppressed by prednisone. My side effects are hypophysitis and sinusitis. Will the prednisone return my immune system back to a pre-Ipi state or has my immune system been changed permanently? I hope that I benefit from the Ipi infusions but I also don't want my pituitary to swell again once the prednisone is tapered.

Can anyone share insights on the permanent immune system changes from Ipi? Or if prednisone will permanently direct my immune system back to not attacking my pituitary and sinuses?

(there may be other side effects I'm experiencing which have not been diagnosed, e.g. Mild Neuralgia. Hopefully these won't come back/progress when prednisone tapers.

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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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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UBContributor's picture
Replies 7
Last reply 5/18/2017 - 6:50pm

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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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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