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.

Expand/ Collapse Topic
 
Replies By
View Topic
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!

Login or register to post replies.

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/

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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!!!

 

 

Login or register to post replies.

Hi guys,

I have been very busy in the past month and a half and haven't been on the site.  I moved and now just started a new job.  All is great and I am enjoying life and the nice weather.

I just scanned again and found out today that all is perfect.  I feel so lucky!  But again that questions pops up....how much of Keytruda is too much?

I heard from my doctors that they have found that of 61 patients that have come off of Keytruda, only 2 reoccurred.  Those are great odds right?!?!  Seems as though the drug is doing a great job of re-training the body to fight off Melanoma.

So what are your thoughts and what have you found?  And I apologize if you all have already discussed this in the weeks following the ASCO meeting, I missed the conversations and am just trying to feel out peoples thoughts.

Thanks so much and all the best to you fighters out there,

Laurie

Login or register to post replies.

Sorry to be posting again but I have more questions ....

background Stage 3a ~ do not qualify for clinical trial, only 1 lymph node positive, BRAF negative

was told interferon was my only option

was told I "don't want to do Yervoy, Stage 3 dosage too toxic"

 

I called my insurance company to see if any adjuvant therapy is covered by my insurance.

Yervoy ~ 10 ml is covered but needs pre-authorization

Keytruda ~ covered, no pre-authorization needed, $25 for 21 day supply

Opdivo ~ covered, no pre-authorization needed, $25 for 21 day supply

 

Am I mising something?? 

 

Login or register to post replies.

Patrick O.'s picture
Replies 13
Last reply 7/20/2016 - 1:21pm

Hello all. Just diagnosed with stage IV as of 7/13. Am seeing my OCL for the first time on 7/20. Just wondering what are a few of the most important things I need to ask him about.
I've been reading many of these posts and it has been a great source of info and hope.

Thanks
Pat

Login or register to post replies.

jlevang's picture
Replies 3
Last reply 7/20/2016 - 12:51pm
Replies by: Anonymous, mkt, Carver

I'm new to this forum, and new to the world of melanoma. I was diagnosed with a stage 2a melanoma on my thigh in Dec. and had the wide excision and sentinel node biopsy done on 12/31. The nodes came back negative, which was a huge relief, and now I'm trying to educate myself on what I should be doing to prevent reoccurences. Recovery is mostly going well, except for a large lump that developed around the incision near the groin where the lymph nodes came out. There is one firm lump at the top of the incision, and then a larger one running most of the length of the 5" incision. The surgeon said it is likely a seroma, and that he could aspirate and drain it, but that they often come back. He recommends letting it go away on its own, which he said can take weeks or months. I'm hoping someone has gone through this, and has advice, or information about how long it takes, what to do, etc.  I'm having a hard time finding much information about seromas, especially in the groin area. Sounds like they are more common in the armpits. It's not really painful just uncomfortable. Thanks.

Login or register to post replies.

Randy437's picture
Replies 7
Last reply 7/20/2016 - 4:19am

I am now 6+ years NED after mets to brain, lungs and small intestine.  Both brain MRI and body CT + blood work were negative today.  So I'm moving to scans every 6 months from every 3/4 months.  Onc said one factor was that I've never "failed" a treatment - mets were surgically removed (brain met followed up with GammaKnife).  It seems there are no standard protocols for long term stage IV survivors - it's an individual decision between patient and doc.  At ten years, we'll revist (knock on wood).

Login or register to post replies.

Pages