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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Casitas1's picture
Replies 5
Last reply 7/23/2016 - 5:56pm
Replies by: jvictoria, Anonymous, Lee Parlier, Casitas1

Been on Keytruda  January of this year. Caught a virus two weeks after 1st. infusion. I have had a productive cough with bad taste ever since. Just wondering if anyone has had this as a side effect? Cough is listed as one...

Best,

Paul

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/23/2016 - 3:30pm
Replies by: Alce123, Janner

Hello!

Just a quick question for anyone out there who might have had a similar experience.

On 06/28 I had a punch biopsy of a mole on my right leg. The path report came back positive for melanoma depth of 0.44mm, no ulceration, mitotic rate of 0.

On 07/13 I had the rest of the lesion excised. My surgeon wanted to do this before the WLE to get a full path report before destroying the lymphatic flow in case I needed a SLN biopsy.

I called today for the results because the anxiety was killing me. Turns out the PA my doc usually works with had a baby yesterday so I got her very fresh replacement. Anyway, the PA said I'd that I'd have to discuss it with my surgeon and was confused because the report came back as "no evidence of residual tumor in specimen."

I'm confused since the original path report said the edges WERE involved (but that it had clean deep margins).

Don't get me wrong, I desperately want this to be true but how likely is it?

I have an appointment on Thursday morning with my surgeon.

Alc

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jennunicorn's picture
Replies 17
Last reply 7/23/2016 - 11:54am
Replies by: Anonymous, jennunicorn, kylez, Bobman, Polymath, JoshF, Gene_S

My dad sent me this article, thought it was very interesting.

http://www.today.com/health/how-red-hair-gene-raises-skin-cancer-risk-t1...

I am the only one in my large family with red hair. When I first met my melanoma dermatologist she told me that even if I had never seen an ounce of sun in my life, I probably would have ended up with melanoma anyway due to the red head gene. It's like I was born with 2 decades worth of UV ray exposure without ever having seen the sun yet, pretty wild. Any other gingers on here will find this interesting too. 

It's also for anyone with light hair and light eyes... you likely have the ginger gene in you too. 

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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ecc26's picture
Replies 3
Last reply 7/22/2016 - 9:45pm
Replies by: ecc26, kylez, JoshF

Starting last Friday up through today I have spent the better part of every day (except Tuesday) and one overnight in the hopital. My poor husband has been with me every time and so has missed much of his work week as well. Hoping this trend doesn't continue.

Last Friday I started the week with a regular visit with my oncologist before Monday's scheduled infusions of IPI/PD-1. After looking at my bloodwork and listening to my complaints of worsening belly pain (not nausea) over the previous couple of days he decided to admit me overnight for a chest/abd/pelvis CT and a blood transfusion. He also more or less banned NSAIDs as a method of pain relief and told me to use Tylenol (virtually useless) or opiods (which make me dizzy, nauseated, and generally non functional). I wasn't very happy and we ended up with a compromise that I could use Advil and a muscle relaxant in the morning (back pain) to be functional, and the opioid in the evening when I don't need to be functional, just sleep.

I was discharged Sat morning following the CT, and 2 units of blood. As many know, hospitals are not restful places to start with, let alone with the additional monitoring that comes with a blood transfusion. I spent most of the rest of the weekend resting.

Monday morning I went back in early for a recheck and to get my infusions. They added an IV Fe and started me back on Zometa (for bone strength), so by the end I was there from 8-2. Just got a light lunch and went home- no point in trying to go to work.

Tuesday didn't go to the hospital, but abdominal pain got more prominant, and by Wed morning didn't even dare put water into my stomach I was in such pain. Calle my oncologists office and they had me come in- husband drove and 2 L of fluids and multiple IV meds later we were there from about 9-3, with instructions to come back today @ 10:30. We were there at 10 hoping to be done and have me home before my husband's 1:00 meeting. Didn't happen. While we got started early enough, didn't get the Dr visit, meds, and port de-access until around 2. Husband had meetings at 2 and 3, obviously missed the 2, but instead of being at home resting, I'm hiding in my office waiting for him to come back and get me. His meeting just ended, so we'll be on our way soon.

Not what either of us had in mind for the week, but he's done so much I can't get mad about this. Hoping to not have to go back to the hospital again for a while and planning to just stay home tomorrow.

-Eva

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Ajwells's picture
Replies 9
Last reply 7/22/2016 - 7:07pm

I talked to my medical oncologist last week about starting Yervoy for adjuvant treatment. I decided it is the right choice for me with the research I've done and me being only 27 with all of these years ahead of me for this to come back. I know all of the statistics and the decision wasn't made lightly. But she had told me we would be waiting at least another month or so to get started. I got a call today and they scheduled my first infusion for a week from tomorrow!  Now I'm getting a little nervous. 

Are there any things from personal experiences that I need to know to get ready?  Things I should avoid? Alcohol?  With my children in daycare illness runs rampant in my house. My best friend's wedding turns to be the weekend after my third infusion and I'm worried about that.  Is it okay for me to take my Klonopin the morning of treatment?  I mean yes. I should probably ask my doctor. But I'm wanting personal experiences I guess. The first infusion is pretty mild right?  You just do the thing and get on with your day?  If I'm going to start feeling fatigued and sick is it going to happen between my first and second treatments or does that pretty much start after the second and third?

i want to work SO BAD. Especially with our busiest time of the season coming up in August and September. My counter is counting on me to get our numbers back up. And if I do get some of these side effects that prevent me from doing my job the way I need to I'll let them down again.  

I know in my heart I want to do this. Even if the chances are only 25% better. I'll take anything to not have to go the last three months of my life again. 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/22/2016 - 11:58am
Replies by: Lee Parlier, laulamb, Anonymous

I recently completed surgery. 29 Male. Bilateral LND to level 2 lymph nodes and a quite large area taken off my back for a quite large tumor. Left side started as a SLND but it tested positive so they took the remaining out.

 

I was diagnosed at level 3, I assume 3c given the extent of my surgery and the way lymph nodes on my right side lit up on my PET scan results but I don't know the specifics.

It seems once I leave the hospital (I've been here for about a week as they take care of my skin graft and lymph drains) they want to put me on interferon.

 

I am struggling with the decision still. Part of the reason is that I live and work in a foreign country (home is America) so my family is not here and I am worried if I would be able to work. If I were to use the medicine, it seems like my only option would be to live with my parents again. Part of the reason is there seems to be a lot of divided opinions on interferon. Part of the reason is that I am nutrition and exercise nut and feel I could make sure I am eating the right foods and getting a balance of healthy exercise while staying positive (if I were to go with wait and watch option)

 

If you've read this far, thank you. What I'd like to know is anyone's opinion on interferon, specifically with regards to stage 3 patients. I also saw the 2/2016 study that said interferon showed no effectiveness, but I believe the patients had a much less complicated lymph node situation.

 

cheat sheet: looking for any opinions or advice on interferon, questions to ask doctors (scientific or personal), personal experiences, when/why would you / wouldn't use it.

 

Thank you and I hope everyone is finding the strength to remain positive and live without fear : )

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/22/2016 - 11:36am

Hey guys, I have noticed a bright purple/brown spot on my chest. It bled a little a month ago then never anymore. It seems to have remained the same, but could it be melanoma? Or else, what could it be?

 

Thank you!

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BrianP's picture
Replies 3
Last reply 7/22/2016 - 9:08am
Replies by: Ed Williams, JoshF, Polymath

Pretty interesting article on the abscopal effect and work being done on trying to figure it out.

http://www.pbs.org/wgbh/nova/next/body/abscopal-response/

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Jewel's picture
Replies 7
Last reply 7/21/2016 - 11:56pm

Hi there,

   My husband has been lucky enough to have responded to IPI this far. We will be having scans again in a few

weeks that if hopefully NED will put him at the 2 yr mark. My ? is those of you who have responded long term

were you on the 3mg or 10mg dose? Thanks for taking the time to reply.

Jewel

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Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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lakegirl67's picture
Replies 5
Last reply 7/21/2016 - 6:20pm
Replies by: Anonymous, lakegirl67, SABKLYN

I was diagnosed with Melanoma in situ on my neck in April. My slides were read by a dermpath and I got a second opinion from another dermpath within the same group who concurred with the first. I have already had the WLE with 8mm clear margins, however, I want a second opinion from a different dermpath. May i request any dermapath anywhere in in the US? If so, may I please have recommendations? Thanks so much.

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keepthefaith11's picture
Replies 12
Last reply 7/21/2016 - 4:41pm

Hi everyone. A quick update and then on to some questions. My dad had a PET scan a few days ago and thankfully, it came out clear, with the exception of the brain mets of course. We were all worried, wondering where else this horrible beast would have spread. Now we can tackle "just" the brain mets.
He has 3 more sessions of WBR. Then I am assuming we are on to some type of therapy.

I am with my dad in Europe right now and I am going in to talk to the melanoma specialist next week. It will be an interesting conversation and hopefully we will be on the same page as far as treatments.

The doctor I spoke with today hinted that starting up Opdivo would be premature at this point. Her point was basically that if the disease is under control we shouldn't "waste" it right now. I am assuming they will want to start the BRAF inhibitors instead.
(Not sure I like this passive approach)

These are some questions I would greatly appreciate if someone could give their input on.

1. If you use immunotheraphy drugs, how long do you use them for? And if you discontinue and disease progresses again, can you get back on them?

2. Same question for the BRAF Inhibitors. If we start with the BRAF inhibitors and then move on to immunotherapy, could we go back on the inhibitors again?

3. Does anybody do the BRAF inhibitor by itself anymore, or is it always combined with MEK inhibitors?

4. How do you know when or if to switch over to immunotherapy? I know the idea is to switch over before the cancer find a way around the inhibitors. But how in the world do you know when that is starting to happen?

Thank you everyone for your continued support. It means a lot!

Annie

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Bigdaddy5's picture
Replies 7
Last reply 7/21/2016 - 9:24am

Hi:

Anyone participating in the Polynoma pol-103a trial?  Any info at all on the trial would be appreciated. 

I did search the mpip and saw it mentioned in only about a dozen posts in 4 years. 

Hopefully, you can provide your experience with either considering and / or selecting this clinical trial.

Best regards,

Neil D

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/21/2016 - 9:14am
Replies by: Anonymous, Janner, Ajwells

I just noticed this today. Have no idea how long I've had it so can't say of its changed.

https://imageshack.us/i/pm5EmM5Mp

Since I've not seen it before I'm going to have to assume it's new. Does this look like something to get removed? Or am I safe watching for change. It's aboit 2.5mm 3 max.

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jade1111's picture
Replies 2
Last reply 7/20/2016 - 11:38pm
Replies by: jade1111, Ed Williams

Hello.. My mom had her first infusion 11 days ago. She felt fine till around day 9.. had some  severe cant move nausea (seems to have lifted as she is holding on pills) and bad fatigue and a very angry looking rash on her legs and arms. She is using a topical steroid and claritin. She is currently in a trial.. not sure if she will be able to get infusion tomorrow.. hard to think of her doing that with such a bad rash... and not sure what will happen if she does not get infusion..will she be out of trail.. the trial is good but its complicated feel this time pressure.. though I know they have her safety first.. just so much testing to get into trial.. Venting... Anyway any thoughts on rashes... how long they lasted and doing an infusion with one? Just read in previous post about taking anithistamine at time of infusion.. wonder if she takes consitently would help.

 

Thanks!!!

 

 

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