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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Jubes's picture
Replies 9
Last reply 4/25/2016 - 7:00pm

I love celeste's blog. I can't comment on it as I don't have a google account. Recently she posted a fun piece sharing the frustration of bullies, be they the conventional medicine or homeopathic type. 

I don't want to start an either/or debate. There have been so many. 

I am so lucky to have common sense doctors who give me the very latest medical science has to offer and are still fine with my seeing psychics and native Indian spiritualists, as they say they don't care who cures me as long as I am cured. 

Anyone who does not see the time and effort, intelligence, logic and expertise in celeste's excellent(free) blog, or her contributions here, is sadly missing the most informed help they could get. 

Thanks celeste!!

ps finally started remicade yesterday for the Pembro induced ankylosis spondyloarthritis and hoping for the best. Pet scan end of April but feelin good!!

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DZnDef's picture
Replies 7
Last reply 4/25/2016 - 5:32pm
Replies by: sweetaugust, Anonymous, DZnDef, Brent Morris

For any of you curious about this series showing an alternative medicine take on cancer treatments but did not want to provide your email address to watch it, all episodes are available for free the rest of this weekend with no sign up of any kind required.

 

https://go2.thetruthaboutcancer.com/agq/replay/

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Patrisa's picture
Replies 1
Last reply 4/25/2016 - 2:14pm
Replies by: DZnDef

Dear fellow fighters,

 

I just wanted to share with you words from my fathers oncologyst....

Today he had his 3month check up (and his 5th dose of Keytruda) and his largest (5x5cm subcutaneous melanoma) is now smaller than 1cm (it can not bee seen anymore, just felt under skin)...Other smaller ones have completely dissapeared.... She said he has AMAZING results (we just have to wait for CT in May to see how he s doing "on the inside (mets in his lungs).... She said she has never seen such good results in such a short period on Keytruda.....

Now, what i am aiming at is: My father hasn t changed his diet at all (he is diabetic - but doesn t follow hid diet  rigorously). What we did the moment we realized his melanoma has returned, we made him start drinking aronia (chokeberry) juice every day....I have read that it has amazing health benefits, among them also anti cancerous activity and he has been drinking it every day for past 4 months....

Maybe this juice helped him achieve such good results? I really want everyone of you to give it a go, it really can t hurt, because it is really healthy stuff, but we kinda feel it helped him achieve AMAZING (as the doctor put it) results....

Anyway, i just wanted to contribute to this wonderful forum and maybe help in a way.....

Best wishes to all of you....!

 

Patrisa

 

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rabbits68's picture
Replies 4
Last reply 4/25/2016 - 2:06pm

I spoke today with my physician about using these drugs together. I have not developed a resistance to MEK yet, but he wants to be on the anti PD1 before it happens. My scan this week shows all but original lung tumor is gone. Very happy about that. I was on Yervoy last year and didn't feel well on it so I'm concerned. Any personal experiences? Thank you

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lakegirl67's picture
Replies 4
Last reply 4/25/2016 - 12:27pm
Replies by: lakegirl67, Janner, Anonymous

The path report from the WLE showed "no residual atypical melanocytic hyperplasia (melanoma in siru) within the re-excised tissue." Dr. took 8 mm margins. Since the procedure, I have read that MIS on the neck should be treated with wider margins. Can anyone please tell me if this is correct or recommended? My Dr. said not to worry, but I am second guessing everything and want to have the best possible outcome with this MIS and WLE on my neck. I also showed him two other moles under my underwear line that he did not see during the full body because I left my underwear on. He wants to remove them the middle of April after I return from vacation. He said he isn't overly concerned and just taking precautions and guessing may be dysplastic. I am a mess.  Thanks for any input you can give.

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Hamlet1987's picture
Replies 6
Last reply 4/25/2016 - 5:40am
Replies by: Hamlet1987, Janner, MoiraM

Hi guys

I am looking for some information but was not able to fine it anywhere. 

Hope someone has an idea. 

In October 2015 I noticed a new big mole on my inner right tigh. It was around the size of a pencil eraser and dark brown. 

Didnt worry too much until i read up on skin cancer. Was in Europe in December and had it checked by a dermatologist. He checked it with his tools and said it looks normal. He also shaved it of during the consultation. Now there was a tiny bit of black on it which kind of worried him and he wanted to have it checked in the lab. Since my health insurance does not count in Europe I asked him if it was really necessery. He agreed to shave it of and take another look at it. I left that day without the biopsy. 

So, now im getting kinda paranoid and regret not having the biopsy done. 

Im back home and want to a dermatologist the other day. Told her my story and concerns. Showed her pictures of the mole and she wasnt worried. However, she said we coulndt do a sking biopsy since the mole has been removed  completely. 

Now my question is, can I still have this checked out? And how?

Im going back to another derm this week and probably want a skin biopsy. They should still be able to trace this if there was any cancer in it right?

Looking forward to your advice. 

Thanks guys!

Cheers

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JohnA's picture
Replies 5
Last reply 4/24/2016 - 2:42pm
Replies by: Mat, Maria C, Ed Williams, JohnA

Hey folks, 

My wife has metastatic mucosal melanoma in liver, lungs, and rib, and she has what looks like a very small brain met or perhaps it's a previous hemorrage that is deep inside her brain.  

1 doc is not sure it is indicative of melanoma and so not sure about doing SRS or taking a wait and see to observe how Ipi-Nivo works on it.  She's about to start the combo and they could observe after 4 weeks or so to see if SRS is necessary.

Another doc suggests do the SRS right away and start the combo right away.

We're talking about major institutions with advanced melanoma teams: Johns Hopkins and U of Michigan.

So, given there's a slight discrepancy, we're considering seeing someone at Sloan Kettering. However, my wife is feeling super fatigued and just not wanting to travel for another appt. 

Questions:

1) what do you think about getting a 3rd opinion? Given the places we're considering, is there somewhere we've missed that would be especially experienced at dealing with brain METs? I've gotten the impression that SRS is so common, that it's done very well in most major medical centers.

2) Does anyone know if there are data to suggest that wait and see would be a good or bad idea in a case like this?  

3) We know SRS is enhanced by Ipi-Nivo, but does sequence matter? That is, could you do SRS after round 1 or round 2 of Ipi-Nivo and still get the bumb, or do you need to do SRS first before starting the combo?

Thanks for your input!

John

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Anonymous's picture
Anonymous
Replies 19
Last reply 4/24/2016 - 12:22am
Replies by: jennunicorn, Anonymous, Polymath, Ed Williams, geriakt, Janner

So last month I was diagnosed with Mel in situ on my upper left arm.. Also a atypical mole over beside it.. So his plan was to remove the first remove stitches then remove the second.. Then a full body scan.. Scary and I've lost sleep I won't lie.. I also just had a 2 month old baby girl.. 

on my right arm on the underside about 4 inches below my wrist I have a small fatty lump.. I do data entry for a living.. For the past 16 years my arm has rested in this exact spot on the table while I type.. I assumed this lump was from that.. It's been there more than a few years.. Doesn't hurt.. I showed it to my derm today in light of the Mel on my other arm and he said he wouldn't think it was related to the Mel from my left arm but maybe I should go for a pet scan to check it out.. That alarmed me because from my obsessive googling the past month I've learned that's usually only done in stages 3 or 4.. Seems a little extreme for a small little lump.. But I don't know.. Just looking for insight.. Thank you

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lastexit470's picture
Replies 13
Last reply 4/23/2016 - 1:41pm

About 6 weeks ago, my wife was diagnosed with metastatic melanome in her right groin lymph node.  She underwent a CLND 3 weeks ago.  They removed 10 lymph nodes, only the one came back positive for melanoma.  Both our doctor here in Columbia and Siteman in St Louis have given us two choices.  Do Yervoy or do nothing.  Both doctors have said their advice would be to do nothing.  They have said she has had best case since she just had the one lymph node come back positive and there is a good chance they got it all.  Also, this is an unknown primary.  They have stated Yervoy has some very serious side effects that could be very detrimental to her body, and has a 5% mortality rate from the side effects.  

You are all very experienced, what are your thoughts?  We are leaning towards doing nothing but we want to make the right choice for our 3 little boys and our family.

 

Thanks!  Doug

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Christine.P's picture
Replies 7
Last reply 4/23/2016 - 12:03pm

Hello everyone - 

I am stage 4a, on nivo for 6 months, and have questions for anyone who had/has brain mets that were sympotmatic. I have my next infusion on Tuesday and will be asking my oncologist about this then, but she won't know about patients' experience. 

I know and don't expect anyone to be able to tell me if I need to be worried, but sometimes it just helps to share an experience with those who get it, you know? 

So, for about a week now I have been waking up every morning with a bad headache. Already a migraine sufferer, I wasn't all that worried at first. These don't feel like my migraines as they are across my head (behnd my eyes mostly) rather than in one localized area. I also get nauseated and have actually been nauseated all day every day for this week. OTC meds take the edge off the headaches, which is good. 

The other thing - and the thing that actually concerns me - is the dizziness and the difficulty I seem to be having reading on the computer. (I teach online so I do spend a lot of time on the computer, but no more than usual these past months). I cannot follow the page when I scroll without squinting and I always feel like there is a slight - I don't even know how to describe it - pressure? in my head behind my eyes making it difficult to focus mentally. I wish I could describe it better. It feels like a heavy "fog" that makes my eyes feel unfocused and my brain slow and awkward. 

I've had days with this inability to focus occasionally throughout my life - but never all day every day for an entire week. This seemed to just come up out of the blue last weekend and I'm feeling a little stressed about it. Could it be some kind of delayed side effect of the nivo? 

Again, I know that no one can say if this is even anything except my doctor and probably some scans, but if anyone can share experiences that may be similar, I think I would feel better. Or at least I won't feel alone. 

Thank you for listening.

 

Christine P. 

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Maria C's picture
Replies 12
Last reply 4/23/2016 - 11:44am

Hi all - 

Tomorrow I get the results from the MRI & CT scan I took yesterday and am quite nervous about them. I'm paricularly concerned about the MRI, since 2 months ago was the first time they came back clean with no brain mets since all this began last summer.

For some quick background, I've taken all 4 ipi/nivo combo infusions during which time I've also had 2 gamma knife procedures. I've had severe reactions to the combo, including inflammations of the eye, liver, and lungs (with steroid treatment for each), full-body skin rash, severe loss of hair (3/4's out, with no signs of stopping), and now signs of vitiligo (white eyelashes, eyebrows, and now patchy 2-toned skin). All that said, I am NOT complaining because I'm already seeing results towards remission and I'll do whatever is needed to "battle the beast" and prepare for whatever battles lie ahead.

In preparing for my follow-up appt. tomorrow, my questions are:

1. Is there anything I can do or take to reverse the hair loss?

2. Ditto for the vitilogo?

3. Is there any proof that the Nivo maintenance protocol is tied to better stats for patients, and if so, where is this report specifically?

If anyone on this board has had these issues and have any answers or advice, please share. And also, should I be asking any other questions for tomorrow?

As always, thanks MPIP for this "think tank" patient forum!!

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

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Maxapooh's picture
Replies 4
Last reply 4/23/2016 - 11:01am

Hi everyone, 

My doc wants me to try a clinical trial with Abemaciclib ( LY2835219, Eli Lilly ) 

Has anyone heard of it? Any information will be appreciated. 

Maria 

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CHD's picture
Replies 7
Last reply 4/23/2016 - 12:32am
Replies by: CHD, JohnA, Mary-E, Becky, Teochasse

I can't find the post, but I could have sworn I read earlier someone said a specialist/doc told them there are no long-term survivors of mucosal melanoma?  Does anyone have more information on this?  Been told the same thing?  Studies?  Been told the opposite?  Known someone who is a long-term survivor?

Not sure how long-term survivor is defined.  I am 3 years out from my diagnosis of vulvar melanoma with radical vulvectomy.  Stage I-II with regression but no lymph node involvement.  Later diagnosis of vulvar MIS, three surgeries total, but last PET scan in August clear.

I had not heard that there are no survivors long-term.  Does anyone have more info on this? Long-term meaning how long?  I know this is going to nag at me until I figure it out!  Have tried researching it for myself but no luck.  Am not scheduled to see my specialist until August, so long time to wait for answers. :)

Thanks in advance.  I will happily accept personal stories. :)  Ugh, this disease just keeps me in limbo sometimes.  If this is what the specialists are saying, I want to know that, too.  But definitely curious how "long-term" is being defined here.  My understanding was that mucosal melanoma survival was similar to cutaneous in that depth, ulceration, mitosis rate, etc., all had an impact.  But I don't recall ever discussing exactly what "long-term" survival for us actually meant!

I realize not a lot of us here on the forum, but any insight appreciated.

Cheri

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/22/2016 - 4:25pm
Replies by: jennunicorn, Anonymous

http://imageshack.com/a/img923/8749/vHxodP.png

 

It's small but seems irregular.

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/22/2016 - 4:17pm
Replies by: lakegirl67, Janner

It all started by visiting my Derm for the first time in 6 years for a full body check up. I'm 49 with a a lot of sun damge and regrettably used tanning beds as a teen. He didn't like the look of a "freckle" on my neck. He did a shave biopsy and here is the report:

Gross desription: a shaved portion of skin is received, inked for margins and submitted complete in one cassette with transverse sections taken. .9x.9x.1cm

Microscopic exam: there is a proliferation of atypical melanocytes within the basal layer. Some of these cells are seen migrating upward through the epithelium. These are changes seen in melanoma-in-situ arising within a dysplastic nevus. The lesion is completely excised.

Note: although excised, reexcision is recommended.

Diagnosis: Atypical melanocytic hyperplasia (melanoma in situ) arising within a dysplastic nevus, completely excised. (SEE NOTE)

My Dr. was on vacation so another Dr in the practice gave me the news and assured me that this was "NOT a   melanoma" and that "This added diagnosis was added by the pathologist to ensure that it would be treated as a melanoma in situ but your mole does not have all the criteria needed to make the diagnosis of melanoma.I realize that sounds odd,  keep in mind the pathologists intent is to ensure adequate treatment."

So an appt was set up for yesterday with my Dr. to have the WLE. When I met with him, he told me that it was melanoma in situ and that the pathologist was using "old terminolgy". What the heck?? I went through with the procedure because the treatment is is the same for either AMH & MIS. I think he did 8mm margins and I have a 4 inch incision on my front neck area!

He reassured me that this would take care of it, but I am not so sure I feel reassured about anything right now. I'm scared that these results will show something more sinister. I fear that there will be a reoccurance and I have a lot of questions. Can anyone offer advice. Why the difference in interpreting the path report? I called the path lab today but they won't let me talk to a path. I want to know because it matters to ME if this a Melanoma diagnosis or not!! Am I missing anything? Does this seem like a good path report in terms of info provided? Thanks!

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