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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Tomorrow is my moms first day of trail for Epacadostat and Opdivo (nivolumab).. We are nervous.. yet can I even use the word.. excited.. It has been 5-6 months since we found out about the stage 4.. and other then Gamma Knife a few weeks ago this will be the first treatment that addresses those invisible but seen on scans mets... Going from the information and diagnosing and planning stage to actual treatment....

Any suggestions for infusions.. what helped deal with nerves or helped with the after affects.. 

Also curious if anyone else on here has experience with epacadostat?

Best to all!! 

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Maria C's picture
Replies 1
Last reply 7/8/2016 - 10:43pm
Replies by: Patina

Hi there - 

Has anyone had an experience where their SRS treatment did not succesfully "zap" the brain met out? It appears I have had 3 out of 7 brain mets that did not enter death stages, and will soon be cyberknifed after first being gamma knifed months ago....

Has anyone else experienced brain met radiation in the same spot...?

The good news is that it was not 2 new brain mets (totaling 9), but 2 old ones that never "died" that have been showing up in my latest MRIs.

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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CHD's picture
Replies 2
Last reply 7/8/2016 - 6:57pm
Replies by: CHD, Kim K

So PET CT is clear except it lit up around one ovary and slightly into the vaginal area.  PA says this is "normal," though.  I don't get athe official report of results until my followup visit next week, but I am wondering why it would be normal for an ovary to light up on one side?  This is my third PET CT in 3 years and this did not happen on any of the others, though last year there was some kind of  "soft tissue anomaly" on the left, as well as a benign-looking left ovarian cyst on a regular CT, which did NOT light up on the followup PET. 

As someone with a history of vulvar melanoma, the area just seems a little close for comfort, but I am all for thinking it's normal!!  I am also a little confused.  And of course it is going to bug me until my visit next week!  Any ideas?  Do certain areas normally "light up" more than others?  Are ovaries one of them?  Do we know why? 

Cheri

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keepthefaith11's picture
Replies 7
Last reply 7/8/2016 - 1:45pm

I just got off the phone with his doctor in Europe. She said he has 13 brain Mets that they could see on the MRI. They are between 2 millimeters and 13 millimeters. She started talking about whole brain radiation therapy. Apparently they don't do gamma knife at that hospital. There is however a hospital in the country that does it, but usually for no more than three mets.
I kept pushing and she agreed to send his scans down there for a second opinion and see if they could do it for him. Not sure this is going to work out. It is so frustrating when you do not have options.

They are doing a PET CT scan to see if there is any additional spread. His blood work was completely normal. I am assuming they checked the marker for cancer in his blood. Forgot to ask about that.

She wants to start whole brain radiation on Monday, but she said she would call me tomorrow when she finds out about the second opinion on gamma knife.

Does anybody know if whole brain radiation would get rid of tumors this size? And can they then do gamma knife on any remaining tumors?

She said they usually start targeted therapy or systemic therapy 2 weeks after radiation. Would that still give you the abscopal effect?

Thank you for your help everyone!!

Annie

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Replies by: Anonymous, Bradley75, Janner, desertsun, Fen, Andrew1725, Prd10, mjanssentx

First off please don't question why my husband and I have chosen interferon, we believe that this is the best choice for us as this time, he is stage 3b, and in the off chance that this beast comes back we want another option of treatment such as yervoy of opdivo.  

I lost my 1st husband to this ugly disease after a long 14 yr battle so I know how this disease rears it's ugly head over and over and yes I know how advanced the treatments have come in the 7 years since he has been gone.

Now on to my question...as my 1st husband wasn't able to tolerate interferon.....so this is all new to me.  These treatments are taking a horrible toll on his memory, he already had problems with his short term memory to begin with as he is diabetic, but now it is horrible.  I swear sometimes in the evening he will check our back door 15 times because he doesn't remember locking it.  Just yesterday he tried making himself breakfast and left the gas stove burner on for like 3 hours because he forgot to turn it off and went and laid down.  I could go on and on for days.  I have set timers up to remind him of his med schedule because I have had to find work, and he can't work even if he had a job to return to.

Can anyone tell me how much memory returns HONESTLY, I've already been to hell and back once, I'm prepared to do it again, but I just want the truth this time, so I can be prepared.  

I completely understand if nobody here has any answers as you have all been able to move on to bigger and better treatments, I'm just sort of grasping at straws, most of the Dr want to sort of treat me a bit on the gentler side due to my past, and I understand that, we have one that is a real straight shooter but is out of the office for a few more weeks.  I'm just desperately looking for some answers.  My husband is only 50 years old, and I'm 44, not quite what I had planned for my 2nd marriage, but it is what it is I suppose.

Jen Spitz

Care giver 1st time around 15 yrs

2nd time around 6mths and chugging along

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Anonymous's picture
Anonymous
Replies 45
Last reply 7/8/2016 - 11:37am

Has anyone else here been diagnosed mucosal?

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Lee Parlier's picture
Replies 3
Last reply 7/8/2016 - 9:24am
Replies by: Lee Parlier, Linny

I am a first time poster but have read a lot of experiences with people fighting melanoma. Here is a little information about my melanoma journey.

SEPT. 2015: Diagnosed after melanoma 2B was removed from my left hip.

FEBRUARY 2016: Pet scan showed melanoma in the left groin area. Near the tumor site.

March 2016: Lymph node removal in groin which showed melanoma in 5 of the 8 nodes removed. Stage 3b

May 2016: Began yervoy (10 mg) every 3 weeks. I have had minor side effects but mainly fatigue and a little nausea. 3RD dose is due tomorrow with a pet scan next week.

Question:

After the second dose of yervoy I had around 20 subcutaneous spots pop up on my trunk mainly. They have a bluish look and about the size of a pencil eraser.They all popped up within a 24 hour period after my second dose. I have had opinions mostly that this is ipi doing its thing. I have also heard that it could be in transit melanoma. I am waiting on a biopsy result but was wondering, has anyone experienced this and what are they?

 

 

 

Lee Parlier

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CharmaineD's picture
Replies 8
Last reply 7/8/2016 - 9:20am

Good day to all, found this forum while searching for information. So glad I did. The entire internet is filled with doom and gloom about Melanoma and this is the first place I have found positive stories etc. I have not been diagnosed so obviously I am in a diffferent place than many on here. But I am desperate for more information about what I am facing as my doctor has been very vague. I have been in serious health situations in my life before but none has scared me more than the prospect of being diagnosed with Melanoma (have no idea why but I am freaking out a little). Usually I am a very tough person.

I have had a large (over 1cm) flat brown mole (with a much darker brown edge on one sideonly  on my back for at least the past 7 years that I positively know of. I actually have a number of moles on my back but this one is biggest. It could have been there much longer but it is not really a spot I can see without contorting myself like a pretzel.  The first time I noticed it I asked me GP to check it and he said I should not worry as it was flat and I should only worry if it elevates. Having no reason to doubt his opinion I never thought of it again. My eldest child started medschool 5 years ago and did her dermatology rotation this year. She asked me to please let a dermatologist check it out. I was very suprised when the dermatologist told me she thought it looked suspicious and took dermoscope photos of it. She said I must come back in three months and if it has changed or grown we remove it. So suddenly my  "harmless" mole went from ok to suspicious. I asked her what should I expect and she was vague.

When I got home I started researching on the internet (frightening thing) The more I read the more worried I became so I called her and said I wanted it removed rather (I am sure she thinks I am paranoid as her words were, I am happy to wait for three months but if it is causing you anxiety lets remove it). 

So looking for a honest opinion, am I letting my anxiety run away with me here? Surgeon said it was going to leave a relatively big scar but thats ok. So pardon my paranoia but since this mole has been around for years I am very worried that it had plenty of time to do harm if indeed it is malignant so it makes sense to act faster?

I feel like I am overreacting when I read all the brave posts on here but I really need some honest information about what I should do. Thanks for reading and I appreciate any feedback

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ecc26's picture
Replies 16
Last reply 7/7/2016 - 10:31pm

With Roswell Park's relatively new frameless Gamma Knife system, they treated 19 brain mets over the course of about 2 hrs. I have to say, having had 4 procedures with the frame, I can't imagine why anyone would choose that method- I have permanent dents in my skull and each time when the frame came off it took me a long time and a lot of medication to get over what I can only describe as the worst migrane you can possibly imagine (nausea and vomiting inclued) despite some pretty significant pain medication intened to combat that.

I had to get up about half way through because my back doesn't appreciate being in that position and not moving, but so much better, and for anyone that doesn't have that many mets, I expect it would be much easier. They said there was only one other person who had had as long a treatment as I had- drove up from NYC specifically for the frame free for the same reason I was so happy it was available- many mets and many previous treatments. Personal choice, but I am certainly glad I had the frame free option.

Otherwise, starting today steroids are being reduced, though I'll keep the Keppra for a few more weeks. First infusion of the combo Monday morning, so we'll see how that goes, but very happy to have something done about the brain mets. Always worked well for me in the past, hoping it does this time as well.

Good luck to all of you who are in the midst of, or just starting your fight. Please try and take some comfort in the fact that I've been fighting since 2011, have had whole brain radiation and now 5 rounds of Gamma Knife in addition to every FDA approved treatment (one right after the other- often as they became approved). I've never had an any time since the start where I was "in remission" or even "stable" and off meds, but I'm still going. It took me a very long time to come to terms with my disease and be comfortable enough to talk about it with anyone, so you will not get any judgement from me as far as how you come to terms, or what you share/when or what decisions you make for yourself regarding treatment.

I am well aware that every person and their case is different and I've been lucky, but keep fighting, keep looking for the next thing. It's ok to be upset and confused and feel down for a while with new diagnoses and setbacks, just don't stay stuck there. Use this forum, and any other support systems you can fine and lean on them to help keep you going, but don't give up. It's hard, but keep going, get yourself as much time as possible and don't look back and say "I wish..." or "I should have...", just keep looking forward, even when it's hard. We all have a good reason to fight- find that and keep going.

-Eva

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sister of patient's picture
Replies 6
Last reply 7/7/2016 - 8:48pm

Hi guys,

Just  a quick question on behalf of my sister Leisa - we found out in May that the ipi had gone after her retinas - so, she was put on two kinds of eye drops - prednisone and voltarin. The voltarin will be for life now but she's been tapering from the prednisone.  Last week her sight got really blurry again and yesterday's opthamology check revealed the prednisone has caused cataracts - only 6 weeks of these drops and cataracts - we could hardly believe it.

Anyone else experienced this? And, if so, how long did eye docs wait before treating? Usually, from what I understand, they make you go years sometimes before removing them ... doesn't seem fair with everything else she's having to endure!! I've already done a search on Celeste's blog too but no results returned there.

Thanks for any responses.

Best,

Barb

 

 

 

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cavsnut's picture
Replies 6
Last reply 7/7/2016 - 1:25pm

2 years ago I go the call from my oncologist office...still vividly remember as I sat at rhe kitchen table for hours, at least it seemed like hours, after she said "positive". I had a positive lymph node... albeit microscopic, it was still positive....well...life goes on I thought, and fortunately for me it has....today I had my 2 year CT scan, blood work and lymph node ultrasound, and remain NED from my stage 3a diagnosis... It was a very arduous decision to watch and wait , but fortunately the right one for me so far...God bless us all...

 

Craig

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Scooby123's picture
Replies 3
Last reply 7/7/2016 - 12:02pm
Replies by: jennunicorn, Maria C, JoshF

Hi Guys,

Sorry been away a while had a lot on and recovering from Gamma Knife. I went yesterday for my  3 month scans, results next Thursday so a week of worry. So me and my daughter of to majorca for long week end.

Hope you all having a nice day best as you can and i will let you know next week results.

Praying

Scooby123

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gigembritt's picture
Replies 11
Last reply 7/7/2016 - 12:34am

I have an apt at MD Anderson next week. But I was wondering if anyone could give me any feedback on my path report.  Most of these terms are way over my head.

Sections reveal a compound proliferation of melanocytes composed of atypical epitheloid cells arranged redominantly in nests along the dermo-epidermal junction and superficial reticular dermis, in association with host respons including lymphohistiocytic infiltrate and mild dermal fibrosis.  In addition, there are smaller melanocytees located adjacent to the larger atypical cells.  A HMB$% immunohistochemical study performed at the referring institution hightlights both the larger melanocytes in a patchy weak fashion, while the smaller melanocytes are essentially negative.  An immunohistochemical study performed on unstained slidescut from a paraffin block recieved using MART1/Ki67 highlights both the melanocyte populations and rare positivity for Ki67 is noted. Thought the atypical melanocytes have come nevoid features, due to the presecense of cytogic atypica and host respone, this lesion is interpreted to represent a melanoma arising in assocation with a nevus.  Therefore, the following parameters will apply:

Melanoma, invasive, nodular type

clark level atleast IV

Breslow thickness at least .44mm

Mitotic figures <1

TIL, Present, non-brisk

Associated melanocytic nevus present predominantly intradermal nevus

predominant cytology, epitheloid and nevoid

Surgical margins: invasive melanoma and nevus present at deep tissue edge. 

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Bubbles's picture
Replies 4
Last reply 7/6/2016 - 11:38pm

....I just wanted you to know that Miss Pissivity thinks of you often.

Cheers, my friend. Celeste

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keepthefaith11's picture
Replies 26
Last reply 7/6/2016 - 8:22pm

So really bad news. My had had the MRI today even though they could not complete it due to him not cooperating. They were however able to see he has 13, yes, 13 brain mets of varying sizes...

Please, someone give me some guidance..
WHAT do we do now...

Annie

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