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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jualonso's picture
Replies 2
Last reply 9/5/2014 - 2:39pm
Replies by: BrianP, Tim--MRF

Hi folks,

Some of you know that few days ago i failed on BRAF inh. And now im on the decision way.  A new meat appeared in my lung, a very small one SUV 5.1 but all others, including my armpit nodule, are not in PET. As far as i know, a new met always means progression, so i have to change the treatment. My onc. Wanted to stop pills but finallywe decided to continue, at least till i decide what to do. IPI is the most clear option but new Trials are going to come out in a little time in Spain and i want to see if something more interesting could be on them. May be a Combo pembro and ipi or something like that. Now my Onc. Wants to wait 1.5 month to see everything with more perpective. But as you know after Fail Braf the tumor could become more agressive and everyday counts. I want to wait just 15 max for trials information and start IPI inmediatly. Well, thanks for your pieces of advice in this difficult moment.

 

Juan

 

 

 

 

 

 

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Happy_girl's picture
Replies 6
Last reply 9/8/2014 - 4:28pm

I just wanted to share here because I know so many of you have experienced the same emotion.... 

I had micromets in my sentinal node.  It was actually missed by the first pathologist.  So because of that, I  just had the clnd and heard that 34 nodes were removed and ALL were clear!!!! Yay!!!

I was just excited and wanted to share!heart

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Squash's picture
Replies 5
Last reply 9/5/2014 - 5:15pm
Replies by: SABKLYN, Janner, Squash, Momrn5

Hi

I recently found out via ultrasound that two sentinel nodes that I have been monitoring are now malignant with a 5mm and a 6mm growth respectively.

The doctor wants to do a full groin dissection but after reading everything and considering QOL issues I have opted against his advice and decided just to have those two nodes taken out.

Has anyone else been in that situation and done the same thing?

I have decided to try and mop up any existing melanoma undedected by ultrasound using alternative therapies.

I have cleaned up diet diet getting rid of all sugar, white flour, fried foods , red meat and dairy.

I started taking Avemar ie fermented wheat germ extract which according to some research is very good for melanoma and also beta glucens, IP6 , COenzymeQ10, green tea extract, tumeric,organic phyto greens, selenium and I am using a zapper for electrotherapy threatment.

Has anyone had success with these therapies?

 

 

 

 

 

 

 

 

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meghanod1's picture
Replies 2
Last reply 9/6/2014 - 9:46am
Replies by: snbsmith1, RJoeyB

My brother is in treatment for stage 4, recently experienced mixed response to AntiPD1, now on to TIL therapy at the NIH. He's having a tumor excised next week and then will have to wait a few weeks whils his TILs hopefully grow. Unfortunately he is also experiencing a lot of pain from a cluster of tumors that are not operable at this time. He's looking into options to manage his pain and wondering what experiences anyone has had with: 

- General pain management strategies -- in addition to narcotics including Lyrica, MS Contin and Dilaudid we are consulting with pain management team to look at nerve blocks and other options. Also trying accupuncture

- TIL treatment while on narcotics or other treatment for pain management (particularly since he's in a waiting period for TIL therapy to start)

- Options people have used to treat a specific troublesome tumor -- radiation therapy, someone else mentioned injections of  IL-2, others? 

- Anyone with experience going for a second round of Zelboraf to shrink a troublesome tumor? 

Any and all thoughts on these questions much appreciated! 

Thanks,

Meg

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/4/2014 - 6:35pm
Replies by: Anonymous, Janner

I just received the call that I have malignant melanoma.  I'm awaiting the pathology report by email.  The doc said it was stage 3 - but i don't know what classification system was used.  She said it was not thick and that i'd need WLE and i'd likely be good to go.  Apparently the report said the cells were close to the border of the excision, and as such, another excision was recommended.  Can anyone shed some light?

thanks.

newbie

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Tim--MRF's picture
Replies 18
Last reply 9/11/2014 - 2:23pm

The FDA has approved Merck's PD1 drug, pembrolizumab, for use in patients with metastatic or unresectable melanoma.

The drug, which will be sold under the name Keytruda, was approved based on a trail of 173 patients. 24% had tumor shrinkage and most of those patients continued to respond after 8.5 months. This is by far the best response rate of any melanoma drug currently approved.

The drug is approved for patients who have already been treated with ipi and, for those whose tumor has the BRAF mutation, with a BRAF inhibitor.

Tim--MRF

 

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Frannie55's picture
Replies 2
Last reply 9/5/2014 - 10:34am
Replies by: Tim--MRF, Bubbles

It's been quite a while since I've checked in. I seem to remember someone having lists of resources for financial help, nutrition, and a bunch of other stuff. Does anyone know where I can find it? Thanks all.

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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Colleen66's picture
Replies 1
Last reply 9/8/2014 - 11:49pm
Replies by: Melissag0624

Has anyone else developed Keratitis following Imunotherapy, specifically HD Inf.?  During the 4 week treatment my eyes were badly effected with inflamation and pigment changes.  Now the eye Doc is suggesting Plunctal Plugs to help with this.  

Any insight would be helpful.

Colleen

Live!

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/4/2014 - 7:52pm
Replies by: JoshF, Anonymous

I heard University of Chicago just got Dr Jason Luke from Dana Farber under Dr Steve Hodi, which is great because Dr Gajewski at U of Chicago travels constantly. 

 

 

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Replies by: Melissag0624, Ginger8888, none1234, Anonymous

Hey guys,

I'm a bit lost and was hoping for some advice. I was diagnosed with a benign spitz naevus at the age of 13 which was surgically removed back then. In 2010 i noticed a small lump on the edge of the scar tissue from the old excision and had it removed. Back then it was identified as excess scar tissue (hyperplastic scar tissue). The following years the lump returned and was removed 3 times (always approx 12 months in between) with identical characterization.

Now in 2014 the last excision was reviewed with more care and identified as a desmoplastic melanoma with slightly increased proliferation no ulceration and no apparent metastasis in the draining sentinels, no circulating S100 in the bloodstream and a clear sonography.

Due to the fact that the tumor was mistaken for hyperplastic scar tissue there was never a clear staging or assessment of invasion depth.

After the last excision the area stayed free of any unusual changes and i entered a regular postoperative screening schedule. 

Now to the crucial part: My treating institution scheduled me with a low dose intron-A therapy which is to be continued for 18 months. I am on it for a month now and the side effects are very very very unpleasent.

To my understanding the overall benefit of Interferon for survival was seldomly demonstrated. 

Does it make sense to continue the treatment and risk my general good health and healthy mental state (retinal damage/depression/general immunosuppression)? I would suspect that the reoccuring growth was due to the fact that it was never fully removed and always still there right after surgery. Overall malignancy was suspected but not finally clearly demonstrated. 

I can not get a definite statment from my responsible institution.. their remark was that they have to recommend it when the staging is not clear.

Best,

Lars

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/4/2014 - 8:51am
Replies by: hannahcopeland1, Anonymous

I am a stage 4 patient with mets in my spleen liver and brain. I have tried vem and wbr but neither have worked. I was told that I will be put on temozolmide next but oncologist running out of options. Just wondered if anyone else has been in this situation and how they cooed

Thanks

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Gene_S's picture
Replies 1
Last reply 9/4/2014 - 3:46am
Replies by: rick1981

Just wanted to give you a quick and final reminder...

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REPLAYS are available for 48 hrs. for any shows that you have missed.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MacMac's picture
Replies 5
Last reply 9/3/2014 - 11:28pm
Replies by: Lil0909, MacMac, Anonymous

I just received my surgery date for the WLE and SNLD (September 12).  When I spoke to my Dr he indicated that I would be having a lymphoscintigraphy the day of the surgery.  I received a phone call from his surgery coordinator and she indicated that my Dr. ordered a lymphoscintigraphy to be conducted 5-7 days before my surgery (in addition to the one the day of).  I have an appointment with him for a pre-op on Monday (he is out of the country).  Do any of you know the reason for having two of these procedures and why 5-7 days before?  Thanks!

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logogriph's picture
Replies 2
Last reply 9/3/2014 - 8:18pm
Replies by: logogriph, Janner

My family has a somewhat distant history of melanoma (grand-relatives and some cousins). I'm 21 and I'm going to the dermatologist next week to get a flaky and generally abnormal birthmark looked at (and hopefully biopsied), and since I've never done this before I have some questions and concerns that I'd be really, really grateful if anyone could answer.

Right now, I'm trying not to think too far ahead and scare myself, so my only questions are about costs and procedures right now. I don't have insurance, and I don't have a lot of funds to spare at all. It's taken me months to scrap together enough just to cover the 110$ office visit fee. I know for sure I want my birthmark biopsied, but I also have a small (about 2-3mm) atypical nodular mole on my abdomen that I might want biopsied too. So, I want to ask how much a biopsy would cost? And would I have to pay this fee or any portion of it upfront? Will I be restricted to only certain biopsy types, like shave? If a doctor doesn't think a mole should be biopsied, will they generally refuse to do it or will they agree for my peace of mind? Will I be given any anaesthia for a biopsy?

I know the costs probably vary from clinic to clinic, but any kind of information could help really.

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