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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Hriggenbach's picture
Replies 5
Last reply 1/16/2017 - 7:28am

Has anyone had this  procedure? I'm wondering what the recovery time is, if they have to move the nerves, and if is lessons the chances for lymphoedema?

I'm 3b now with 1 of 2 positive lymph nodes if more lymph nodes test positive does that change anything as far as treatment? I'm choosing to treat this aggressively because after WLE they found 2 tumors 2.3 and 4.5 one ulcerated with additional satellites . I've only met with the surgeon so far after the surgery I will meet with the medical oncologist to discuss medications so at this point I don't know my options.

Holly

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Been a member for a while, but rarely post. 2.5 years since Stage 4 (lungs) diagnosis. Now in liver, lungs, both adrenals, chest wall, and just this week, small bowel.

Started keytruda late August, but have been struggling since. Lots of bleeding mets, and now new mets to the small bowel.

I'm in Toronto, with Dr Petrella, at Sunnybrook. Meeting with her this week, regarding the new mets. Wanted to know if there was anything promising, or available, that I should be inquiring about?

Failed Debrafenib/Mekinist. Radiation on the bleeding mets has failed twice. I understand that I may be nearing the end of my options, but just wanted to find out...

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CindyCo's picture
Replies 8
Last reply 1/16/2017 - 1:00am

Hi Everyone,

Has anyone participated in or have any thoughts on the tumor testing trials for targeted therapy? There are a couple that I was looking into for my mom, but I haven't heard of many patients on the board going this route.  Would love to learn more about it so that I can schedule a consultation for one or the other.

NCI-MATCH:

https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1

I-PREDICT:

https://clinicaltrials.gov/ct2/show/NCT02534675

 

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Scooby123's picture
Replies 4
Last reply 1/16/2017 - 12:37am
Replies by: SOLE, debwray, Scooby123, MaPerny

Can anyone tell me if you can have your cells saved for Till treatment  if you ever need to go down that route. This is if you was having it done private. 

Sorry I have read about how the treatment works but also have read readings when you are so ill and cannot wait for cells to grow . Could you have them saved if you ever needed them. I know it might not work in the first place but if it did would this be possible if paying for it. Plus I have no idea how much it would be but it was on my mind. You can only get it I think but  could be wrong in Uk private. 

Sorry if you think this is a silly question but was woundering, I am braf negative so finding as much I can  on treatments for braf negative.

scooby

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Jubes's picture
Replies 19
Last reply 1/15/2017 - 11:21pm

Hi all

i have just had a PET three months after my lung surgery and it is CLEAR. 

Thanks to you all, as I never make a decision on my treatment without referring to this forum

just have to deal with my spondyloarthritic side effects from keytruda now but even that doesn't worry me now

anbe-Louise 

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MaPerny's picture
Replies 12
Last reply 1/15/2017 - 12:36pm

Yesterday my husband, Juan, had 4 hours of MRI's under sedation due to current back pain levels.  They did spine, pelvis and brain.  Today CT to check abdomen/chest.  

Got results back from MRI's and devastated to learn from spine Drs/radiologist here at MDA that he has LMD plus brain mets for the first time.  

Not sure about rest of results yet.

This has been such a fight since stage 4 diagnosed in Oct 2014, high dose IL-2. Ipi, Opdivo, Il-10, Keytruda, CVD chemo, ipi/Nivo combo, surgeries, radiation and TIL.  And now leptomeningeal disease.  I have always had hope and tried to keep us all upbeat but this news feels like a punch in the stomach.

Waiting to hear next steps.  Any advice from anyone about LMD treatments and what we should expect would be much appreciated.

Maria

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Buddy0513's picture
Replies 19
Last reply 1/15/2017 - 12:38am

Hello everyone,

Just a question to anyone that is on this part of the treatment. My mom made it through her 4 infusions of Ipi/nivo, about a month ago now she started the maintenance period of just nivo. Ever since she started this, she has been extremely fatigued almost to the point where she can't function. She had some fatigue and sickness while on Ipi/nivo, but since the nivo it has been twice as much. All of her major bloodwork (such as thyroid and liver enzymes) have been coming back fine. She stopped her prednisone and is currently on lasix to help reduce the massive amount of swelling she has from prednisone (she gained well over 10 lbs at this point, was on it for over 2+ months).

I was just curious if anyone else had this same experience with the fatigue? And if they did, what did you do to help offset/control it? Any insight about this is helpful. Her oncologist said that this is normal regarding the Nivo, I just haven't really heard about it before so I am getting nervous. 

 

P.S. He also called for her first CT scan of her abdomen (where the tumor originally was) next week. I am assuming those results will be in ASAP since they want it before her next Nivo treatment (not really sure why)...Needless to say I have been sick to my stomach all day about this!! I will keep everyone updated...

Melissa

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fortiz's picture
Replies 5
Last reply 1/14/2017 - 6:57pm

Yesterday my wife received the results from the last TAC. Good news. She's been NED for 3 years and a half on BRAF+MEK clinical trial. She continues full dosage and doing well.

Thank God.

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snow white's picture
Replies 19
Last reply 1/14/2017 - 5:43pm

Hi everyone, I think its important to share any bit of good news on here to keep spirts up.

I spoke to Dads doc yesterday and they got Dad CT scan back (full body).  There were no new tumors and it looks like the ones in his spleen are dwindleing.  The Pet scan showed lots of tumors in the spleen, but the ct scan before starting Opdivo showed about 12 tumors.  Well the current CT showed only 5!!!  So it looks like Dad is responding to the drugs.  Dads blood work is a little concerning, his platelets are down to 77, so they couldn't do his treatment on Tuesday.  He will retest agian next week and hopefully the number will be up enough for him to get his infusion. I believe he is getting his spinal puncture done next week as well.  We are still headed to see Dr. Hamid on monday, so will update after that.

one day at a time........

xo Jen

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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adriana cooper's picture
Replies 5
Last reply 1/14/2017 - 2:26pm

The results of last weeks scans are back. Adriana now has a blood clot in the iliac vein and now gets to enjoy a lifetime of daily self inflicted blood thinner injections or oral medication, YAY. According to the Dr., cancer patients have thicker blood and are more prone to blood clots, in fact SCCA has an entire  unit dedicated to it's management. Adriana’s' comment to me “I don't recall reading this in the brochure when I was thinking about signing up to have cancer.” I reminded her, that was the 2012 brochure and that they have added features since then in order to  keep people interested and to recruit new members. She must have received this upgrade as a complimentary trial, but now it's time to start paying for it.

In addition, the reports have noted a sub-q that has increased in size since October 2015 as well as increase in size of  three  mets in the brain (one now classified as a mass at 1.3cm and two as  subependymal nodules) since August 2015 none of which were  ever noted by the radiologists at the time. In fact, when Adriana was diagnosed with LMD in October, the nurse practitioner reinforced the fact that there was no evidence of involvement on the latest MRI.

It appears that the BRAFi was only partially effective this time around, as this apparent progression was on their watch although they were responsible for alleviating Adriana's debilitating pain for which we are grateful. With the discontinuation of the BRAFi part of the mix her swelling seems to be improving (time will tell) and she will be continuing on Pembro only for now in hopes that it will have some affect on the brain. The Dr. does not favor additional gamma knife at this time as it would interrupt the Pembro although we have requested that the neurology department review her situation.

Luckily her blood labs have returned to normal.

You can always count on The Beast to provide new adventures.

Best wishes to all.

Rob and Adriana

Adriana

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Anonymous's picture
Replies 2
Last reply 1/14/2017 - 2:21pm
Replies by: Anonymous, debwray

Hello - I have read that targeted therapies can cause more tumors to appear ina short period of time. Does anyone have any personal experience with this?

thank you in advance.

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Anonymous's picture
Replies 5
Last reply 1/14/2017 - 1:47am
Replies by: mannines, Anonymous, Janner, debwray

Hello all

Thanks for ongoing advice on this pesky atypical mole.

Trail below but short story is displastic nevus reviewed by x2 derms who said mild / mild - moderate displaysia. The first report said clear margins.

I have been keeping an eye on the biopsy site and noticed a darkish spot next to (not within) the biopsy site. I thought it was just healing from the stitches but it is in fact pigment. This has grown quickly (since biopsy 2 December) and is probably 2mm which is as big as original mole but lighter in colour.

I have an apt Tues to reexcise as derm said this is unusual. Any thoughts/ advice here please?

Any questions I should ask at my apt. I know regrowth happens but in the space of 3 weeks?

Many thanks

***

Hi all - copy and paste from last post. Newest to oldest below. Im a little confused and more concerned than before

Many thabks.

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/25/2016 - 10:38pm)
Hi Janner/all - advice needed am more worried than before.

In my first post I mentioned that I was going to get a 2nd opinion from a derm as I found the initial pathology report for my dysplastic nevus to be a little vague.

Well that derm called me xmas eve (great timing) to say that the team of specialists on review felt that the mole was mild / moderate (I had spoken to the first pathologist myself who said it was mild).

My original path report apparently didnt mention any cellular atypia which they found on review.

He also said that they were going to run some new slides as 'sometimes when we look deeper we find some worrying things'. Added that if it was on his arm he would want it cut out.

I am now obviously a bit concerned as to why they would a) upgrade and level of atypia and b) think they needed to run further tests. Do you know what these would be? The clinic where I had the punch biopsy done said no further excision is required.

I tend to suffer from health anxiety so I realise I'm probably blowing this out of proportion but looking for any advice here.

Many thanks

Report
Re: Help interpreting pathology report - atypical mole (Att... Janner - (12/14/2016 - 9:11am)
There is nothing about this path report that screams worrisome to me. If I had clean margins (like this one does), I'd just move on. Not all pathologists classify atypical moles as mild, moderate or severe and that doesn't mean the report is lacking if it doesn't. (It makes it easier for us but we're not really the audience this pathologist is writing for). The description itself usually indicates more worrisome architecture or cellular atypia and this one specifically rules out typical melanoma features. (I am not a medical person or pathologist).

http://www.MelanomaResources.info

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/15/2016 - 8:11am)
Many thanks for taking the time to reply Janner - much appreciated
Report
Re: Help interpreting pathology report - atypical mole (Att... Janner - (12/14/2016 - 9:11am)
There is nothing about this path report that screams worrisome to me. If I had clean margins (like this one does), I'd just move on. Not all pathologists classify atypical moles as mild, moderate or severe and that doesn't mean the report is lacking if it doesn't. (It makes it easier for us but we're not really the audience this pathologist is writing for). The description itself usually indicates more worrisome architecture or cellular atypia and this one specifically rules out typical melanoma features. (I am not a medical person or pathologist).

http://www.MelanomaResources.info

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/15/2016 - 8:11am)
Many thanks for taking the time to reply Janner - much appreciated

*
Reply Report

Hello all

thank you in advance if you are able to help.

I had a mole biopsied and the pathology report didn't state whether it was mild, moderate or severely dysplastic. It was a punch biopsy of a 2mm mole with 1mm margins.

The clinic said all margins were clear and that no further excision is required, however, I'm seeking a second option (from this forum and another dr) as the report was vague. Any interpretation of the report would be much appreciated.

REPORT:
Skin with increased pigmentation of tthe basal cell layer and a junctional melanocytic proliferation composed of nested groups along the tips of elongated and variably fused rete ridges. There is also lamellar fibroplaysia, mild chronic inflammation, pigment incontinence and a few banal melanocytes in the upper dermis.. There is no confluence, mitototic figures or pagetoid scatter seen.

Conclusion: Compound melanocytic naevus, dysplastic

This is a fantastic forum and source of information and comfort which I have been reading over the past few weeks.

Any advice appreciated and I will update also with 2nd opinion from Dr when I get it. I know aypical moles are contentious in terms of their ability to turn into melanoma and also that there is no general consensus on treatment so I'm finding it all a bit 'grey'...

Best wishes to everyone here

Report
Re: Conflicting advice on dysplastic nevus - confused debwray - (12/27/2016 - 1:08pm)
Hi,

Dysplasic naevus by definition have some abnormal /unusual features. They can evolve - and MM can develop within a dysplasic naevus which happened in my case - but only in a small part of it.

HavIng said all that- you have asked for a second opinion .The reports seem to tally so far but are expressed slightly differently. I'm guessing that the second lab is doing the same as they did for me and are running some further stains that might possibly indicate melanoma cells. Given that the lesion has already been removed with clear margins - you are in a good place. In the rather unlikely case that the stains were positive then you would probably be advised to have further margins..but the first level of tests were OK ,so you just need to sit tight unless you are told further action is needed.

If it is so hard to identify- chances are all will be well as it has been caught early.

Wishingyou well

Deb

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Re: Conflicting advice on dysplastic nevus - confused Janner - (12/27/2016 - 5:07pm)
You asked for a second opinion and you got it. If you asked for a third opinion, it would likely differ. Pathology is an art as much as it is a science and you are dependent on the person who reads and "interprets" what they see.

The 2nd lab interprets things differently - more cellular atypia. They are just going to do their own analysis. I would absolutely NOT WORRY about any of this. This isn't going to come back as melanoma. And it hardlly matters how much atypia exists in the grand scheme of things. It's removed. I've had 3 melanoma primaries and I don't even give a second thought to any dysplastic moles removed if they have clean margins. Don't let this get to you because it isn't worth the angst!

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Michelle820's picture
Replies 3
Last reply 1/13/2017 - 8:29pm

Hello, I was wondering if anyone has any info on acral melanoma. I have had these medium brown colored bands/streaks on both of my thumbs from for a least a few years if not more. I had googled them in the past and it's extremely difficult to find info on possible benign nail conditions that could mimic acral melanoma. Of course since I had my recent WLE (which was an insitu thankfully) I am scared at every little "suspicious" mole etc.  I was always scared or forgot to show the Derm my nails-and I have had this prior to my recent excision. I do have a check up next Tuesday.  

Im just curious if these streaks are "common". I am light skinned with brown hair and have tons of freckles and moles. Wish I could post a picture! Any info would be greatly appreciated. Thank you :)

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AvaL's picture
Replies 3
Last reply 1/13/2017 - 4:54pm
Replies by: AvaL, Bubbles, jennunicorn

Hi all,

We've just found out my stage 3a hubby's tumour was positive for BRAF mutation. I know this is good in terms of if he he ever needs treatment at stage 4 he will have more options now. Do you know if it means anything in terms of the cancer though (e.g is it any more aggressive? Or does it act in different ways?). I can't find much on the net to read about it, other than implications for treatment x

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