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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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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matthew111's picture
Replies 9
Last reply 5/15/2017 - 9:58pm

I always thought a dysplastic nevi mole was considered normal, but looking at some things people have said they got a dysplastic nevi mole and had to go back for more excision with margins and it sounded like it was almost as bad as melanoma. My mom had a mole removed that was dysplastic nevi stage 1 and didn't need to go back for more excision. At what stage does it require more excision?

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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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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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seireland0611's picture
Replies 6
Last reply 5/15/2017 - 11:40am

My mom is stage iv, brain mets (1.8 cm left parietal lobe, 8mm left posterior putamen, and 3 or 4 mm frontal lobe lesion that appeared recently next to the 3cm left frontal lobe lesion she had resected a few weeks ago.

Gamma Knife is on Wednesday the 17th, PET scan on the 22nd, first keytruda is on the 24th. 

We're waiting on BRAF testing though melanoma specialist plans to keep those drugs in his pocket for later if needed, if she's positive for the mutation. 

We don't know where the primary is. She had a PET scan in january after the parietal lesion bled and caused her right sided weakness and unsteady gait. She was taking max daily dose aspirin for unrelated neck issue when the bleed occurred. She hasn't taken aspirin since.

Today we met with her neurosurgeon for post op consult. He seemed to think she's checking out okay. She mentioned that she was again having the right sided weakness (mostly slightly unsteady gait, mild bumping into things, needing concentration for fine motor skills) but not to the extent it was before.

I asked him if it could be that same met bleeding again and he said it's possible.

I'm scared. Could she have some kind of massive hemorrhage and die? I was too scared to ask any more questions I didn't want her to hear the answers to. I know that's not good. 

Last time, to my understanding, the bleeding didn't extend beyond the lesion. I'm hoping this is just a blip. Radiation oncologist and melanoma specialist are super optimistic about gamma knife and keytruda considering that she only has evidence of disease in her brain.

I'm terrified one of these is going to blow and kill her before they can be killed themselves.

I'm terrified this next PET scan is going to show systemic spread. 

I'm terrified gamma knife and immunotherapy won't work.

As a final note, the only two spots that lit up on her first PET scan were a hilar lymph node outside of lung that was biopsied and negative for cancer (it barely even lit up) and a spot in her terminal ileum in her intestines....

Then I find this....

https://www.hindawi.com/journals/crigm/2013/958041/

Reassurances, honesty, anything is appreciated,.. I'm back in panic mode :(

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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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Elaineo's picture
Replies 1
Last reply 5/12/2017 - 6:15pm
Replies by: JWerwa

I found this freckle that I have as my profile picture.  Wry scares right now. I don't regularaly Check my skin so I don't know how long I have it. I only spotted it because it was a sunny day and I have no socks on when a friend began talking about moles. 

Went to doctor yesterday so am waiting for an appointment to see a specialist. Not sure how long it will take but if it is melanoma I don't think I can afford to wait long at all. 

very scared and would appreciate advice on the image. 

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