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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Eileen L's picture
Replies 1
Last reply 10/1/2014 - 2:23am
Replies by: Fen

I am a seven year stage 4 survivor on /Vemurafenib/cobimetinib combo as part of the Phase 1 trial. Have been NED for the past 18 months or so, have had a wonderful response to the Braf/MEK combo.

Have lived long enough to have developed breast cancer! Looks like it is HER2+ so treatment will consist of targeted therapy, probably Herceptin.  

Anyone out there on a Braf/MEK combo being treated for a second cancer with targeted therapy? My oncologist hasn't heard of anyone in my position but believes it can be done without drug interactions since the targets are so different!

This turn of events has totally thrown me into a tailspin! I feel like I have battle fatigue, can't  quite believe I need to be a breast cancer warrior as well as a melanoma warrior! 

Eileen L

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kalisama's picture
Replies 6
Last reply 10/1/2014 - 1:53am

Stage IV, BRAF positive, active mets in brain and breast.

Started on Zelbarof for nearly a year after brain excision and gamma knife. Developed a met in shoulder and was switched to Mek/Taf as soon as it was approved. New mets in brain and in dermal lining of brain, as well as in left breast. Gamma knife has not shown to have worked on brain lesions a month ago.

Monday I begin Ipi with my only goal to get to Keytruda. I have never felt good about Yurvoy option and still do not. I have a colostomy resulting from divriticulitis, which I feel should exclude me from the Ipi prerequisite as clearly I have a sensitive colon.

Merck has refused me off label use of Keytruda, so my only choice is to start Yurvoy. I will be receiving 5 gamma knife treatments on my breast as well, starting after the Ipi infusion Monday and once per day going through Friday.

I'm posting this because I'm scared of Yervoy. Can't say why, it's just a feeling in my gut. If those of you who have done Ipi can share some of your experiences with me that I might find helpful, I'd really appreciate it. I'm somewhat new to this forum but have found nothing but wisdom here, and feel that y'all are the only ones in my world who are not speaking Swahili.

Thank you in advance for your time,
kali

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ABELL's picture
Replies 3
Last reply 9/30/2014 - 9:57pm
Replies by: kylez, ABELL, arthurjedi007

Hi everyone,

Please read prior posts for history of the patient...

Need a little advice, really confused and in the dark. Best friend had cyberknife sometime in early August... Started Yervoy August 14th. Only on 2nd treatment now. Her condition has declined 110%. 

 At first, she was tired... Still allowed visitors, communicated via text & answered phone calls. Then the texts got jumbled, didn't make sense. Then those stopped. Now, she can no longer walk or talk on most days.

About a week and a half ago, she went the doctors (for declining health) they advised that she might still have swelling in her brain. They put her back on steroids.  She ended up in the hospital last night, dehydration plus she was not able to talk at all, could not get up out of bed.

They kept her overnight for MRI's, once last night & scheduled another one this morning (not sure why 2 MRI's would be needed).

Is this a normal reaction to Yervoy? Is this a sign that she is not responding to the drug?

I hear of people continuing to work while doing this treatment... Why is her body/mind just shutting down?

 

Any insight would be incredibly helpful...

Thank you!

Amanda

 

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ecc26's picture
Replies 7
Last reply 9/30/2014 - 9:55pm

Hi everyone!

I hope you all are having a good day today. I had been training for a 5k charity run for our local Cancer Resource Center that was to occur at the end of October. With my recent craniotomy, 5k is just not going to happen, but there is also an option for a 2 mile walk, which given my recover is definitely possible and I plan to participate in that segment instead. I have a few team members (my mom and some co-workers), but we need a good team name and I was hoping perhaps some of you out there might have some good ideas. 

I'd love to hear any ideas any of you have for a team name

 

Thanks, and again, I sincerely hope you are all well today

 

-Eva

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oldblue's picture
Replies 6
Last reply 9/30/2014 - 9:45pm
Replies by: Squash, DZnDef, oldblue, ecc26, Anonymous

 

Hi all,

I recently read the avemar research and was surprised that most of it was never followed up with larger studies or trials over longer time in the west. Most fowhat I read came from Russia or Hungary. Maybe there is more research but I haven't found it.

I'm also awareof a clinical trial currently recruiting for high dose vitamin D supplements for those at stage 3 - at least it is in Australia.

Is anyone aware of any other alternative options out there? I am interested in it as an adjunct to more formal treatment regimens as long as it doesn't interfere with them.

Or,is there a website that has them?

Thank you,

Nigel.

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ScaredV's picture
Replies 6
Last reply 9/30/2014 - 8:59pm

Hello all... My fiance got his SNB done today.  His melanoma was 1.2mm thick and on his jawline.  They removed one lymoh node from his collarbone area. 

How many lymph nodes are usually removed during a SNB? Is the fact that only one was aremoved a good thing? 

 

Now we wait and pray for results... The hardest part :( 

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Shollands's picture
Replies 1
Last reply 9/30/2014 - 6:09pm
Replies by: kathycmc

Hi Everyone

I have my first mole removal coming up and am very nervous!

 

i have been a regular sun bed user with fair skin that burns easily.

Has a new mole appear on my chest but wasn't worried as heard that it is common to develop new moles up till your 30's.

However, in the space of the last few weeks it has evolved, changed colour, got darker and is getting more raised by the day, nothing like any of my other moles.

am very scared at what the outcome may be. 

Any advice you can give would be really appreciated.

Thank you all

 

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AusLoveBug's picture
Replies 2
Last reply 9/30/2014 - 5:30pm
Replies by: AusLoveBug, Janner

Hi all,

I'm a 36y.o. Female from Australia. I know I've been very lucky in catching my Melanoma early, I was just hoping someone could put my biopsy report into layman terms for me, for my own understanding. I have to have more skin cut out tomorrow to be certain it's all gone. The part that worries me is that it seems like it was right on the margin & things I've read online say things like, when too close to the margin, cells can be pushed further in. I refuse to google anymore as I'll just make myself paranoid.

My story goes: I noticed a mole on the back of my shoulder that I just couldn't recall noticing before. I wasn't sure if it was new, or was something that was always there just incognito or if I'd seen it a million times but not actually paid attention. I went to the doc as I had a nagging feeling that something wasn't right but even my GP thought it was ok but suggested removing it & checking it anyway if I wanted to. Funnily enough, I said "Can you just take it out as even if it's ok now, it looks like the kind of thing that may be a problem later"... There was nothing overly suspicious looking, it was flat, 5x5mm, but it did have a paler colour in the middle - but that feeling kept nagging away so I trusted my instincts. Whew!

The microscopic examination: Level 1 superficial spreading in-situ melanoma. Nests of atypical epithelioid & spindled melanocytes at the dermal epidermal junction. There is lateral confluence of nests & there is confluent growth of single melanocytes along the junction extending along adnexal structures. There is limited upward drift. There is a dense superficial chronic inflammatory infiltrate, consistent with early regression. There is no dermal component. Lesion lies 0.2mm from the nearest lateral margin.

So I know it's only in the top layer of skin & all should be ok, at least for this one, I just want to know what all that stuff is explaining. Could someone help me?

 

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ronald duclos's picture
Replies 32
Last reply 9/30/2014 - 3:36pm

I have stage 3c melanoma and I am starting biochemo this friday.  I am wondering what to expect? Will my hair fall out? How much excersize will I be able to do (I like to hike and walk/run)...Most importantly, after the treatment, how long before I will be able to go back to work.

 

Any other info on side effects of the biochemo would be greatly appreciated.

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braunerk's picture
Replies 3
Last reply 9/30/2014 - 11:25am
Replies by: evleye, Linny, DZnDef

So I finished Ipi and they did a scan with shows some growth in my tumor but I don't have any new tumors so both good and not so good news. I have something on my left ovary and now they are worried I might have ovarian cancer along with stage 4 melanoma. Can't see to catch a break. Anyone out there with a similiar problem? 
Thanks

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dvd's picture
Replies 7
Last reply 9/30/2014 - 1:57am

A little less than a year ago I was trying to understand the meaning of being diagnosed with advanced Stage 4 melanoma. It was difficult to comprehend the possibility of time running out, of not having to plan for the future, of the world moving on without me. With meditative focus, I ultimately prepared, intellectually and emotionally, to leave - a difficult and almost surreal task. The investigational drug trial was something to do in the meantime.

But I, like others in this forum, have been given a gift of more time. Yesterday, the results of my fourth CT scan over the past six months were consistent with the rest -- no evidence of recurrent disease.

The radiologists are still arguing whether or not the small sclerotic bone lesions are mets or just "bone scarring,", but they are few, small and haven't changed in 6 months, so I'm optimistic.

It's been a little rough climbing back up after being in a deep valley for a while, but I feel like I'm nearing the top. My strength is coming back, my weight is back, surgical scars have all healed, radiation burns are but a memory and there are days that I truly feel energetic. Bicycling, swimming, hiking, tennis - they're all a part of my life again. I'm taking advantage of the extra time I've been given.

Hopefully, this trend of good news from melanoma survivors will continue to grow. I'm a retired physician, and when I was in medical school, my diagnosis would have been a death warrant, but not now. The trend is a welcome change, and a very hopeful one.

 

DVD

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Scribe's picture
Replies 4
Last reply 9/29/2014 - 8:25pm
Replies by: Scribe, Janner

I realize that so many here have much more serious situations, but if someone wouldn't mind commenting on this, it would be much appreciated. My husband, who is 72 and has some cognition issues, was diagnosed in February with melanoma and had a wide exicision in March. He hasn't asked many questions of his doctor about this. It has taken some time, but I was able to go with him today to the dermatologist and got a copy of the original pathology report. I realize there is probably nothing much to be concerned about, but since he is older and has a long history of other skin cancers, including some large sqamous, I just want to have a sense of this:

Melanoma in situ. Reviewed by dermapathologists. 2.0 x 1.5x 0.1 cm.  Poorly defined lateral margins and comprised of atypical melanocytes throughout all levels of the epidermis.

(Later, after the WLE, the plastic surgeon told him the biopsy report had said they had missed 1 cell.) 

Thanks in advance for your comments. 

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JerryfromFauq's picture
Replies 6
Last reply 9/29/2014 - 4:49pm

HAS ONYONE BEEN ABLE TOENTER THE CHAT ROOM IN THE PAST WEEK?  I HAVE TRIED EVRY  FEW DAYS WITH A ZERO SUCESS RATE!

I'm me, not a statistic. Praying to not be one for years yet.

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Doug-Pepper's picture
Replies 7
Last reply 9/29/2014 - 2:43pm

Routine chest x-ray showed something on lungs. Pet scan showed nodule in right lower lobe measuring 1.6 cm x 1.5 cm. & another smaller one.  Another ct scan scheduled for tomorrow on lungs &  brain also. We meet with a surgeon on Friday.Not sure if they will biopsy or remove. Any advice or prayers are greatly appreciated.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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