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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Mimi820's picture
Replies 2
Last reply 11/29/2016 - 9:58pm
Replies by: Mimi820, Janner

Hi:) I am a 43 female with a history of many basal cell skin cancers. I recently had an area of suspicion on my left breast area (12:00). It started as a tiny black dot that slowly enlarged. I had it biopsed and was informed that it was an early melanoma in situ. My pathology report was not very informative-just listing the diagnosis and some medical derm terminology. It did not list depth, ulceration, regression etc that I have read that reports should have. I was referred to a plastic surgeon for a Wide excision. My question is, would the second path report list the above info?

My next concern was the location. Thankfully, the biopsy was pretty tiny, however, its in a slightly delicate spot. About 2 inches above the nipple (sorry tmi). I had a breast MRI a couple months ago because of having very dense breast tissue-luckily, it was negative. However, in my report it stated that there may be a "lymph node" present in the left breast at the 12:00 position***exactly the same location where my melanoma was removed. Ughhh. Do you think this is coincidental? I did decide to go back to see my breast specialist to get her opinion- she is also a surgeon. Thinking of having her do the excision also. Should I ask about the lymph node, and to ask if I can check it out during my excision, or am I being a hypochondriac because it was in-situ in the first biopsy? I appreciate any insight! Ty:)

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KAF's picture
Replies 8
Last reply 11/30/2016 - 12:07pm

Hi all

shortly after I started ipi/nivo I noticed my eyebrows turning white.  This was in June

Now all the hair on my body is pure white - head, eyelashes, arms, legs, etc...  not a drop of color at all. I don't seem to have any skin discoloration at all.

My scans in October were great and I am currently on Nivo only maintenance.

My question is - has anyone else had this happen to them and then have the hair color come back or will mine stay white permanently?

thanks

karen

 

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_Paul_'s picture
Replies 14
Last reply 12/1/2016 - 10:23am

MDA is a busy place. My God! A nurse did not come for me until an hour after my appointment. 

I was lugging two big binders containing my medical history. I'm glad I had them because my medical history fax from SCCA was garbled. So it took another hour and a half to pour through those suckers.
 
Finally I met with Dr. Isabella Glitza. I appreciated the way she laid out available treatment options (no, bio-chemo was not offered), and then discussed them all in light of my history.
 
MDA also has a bunch of phase 1 trials, but no stats on their efficacy. She had a good point that I should exhaust trials first, while I am still eligible (I.e. healthy enough). Because I have failed ipi, pembro, and atezolizumab, there is doubt that the ipi-nivo combo will help.
 
So the prioritized list came down to:
1) Old School TIL, while I am healthy enough (although she also expressed concern that I may be resistant to immunotherapy),
2) ipi-nivo, or
3) some phase 1 trial.
 
She also mentioned that if things get bad, they may be able to buy some time with a combo of chemo drugs. MDA is getting about the same response rate from them as ipi.
 
She also discussed some real mad scientist stuff like tricking my cancer cells into exhibiting BRAF-like response and using targeted therapy to buy some time.
 
Celeste, I forgot to ask about interlesional, but I will ask her via the MDA patient portal.
 
- Paul

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Tim--MRF's picture
Replies 1
Last reply 11/29/2016 - 5:36pm
Replies by: jennunicorn

Today is #GivingTuesday, and in the wake of Thanksgiving season I have been thinking about the many ways that people give.

This community is one of the most giving places I have ever known. Hundreds of people donate their time and their energy by offering care, prayers, practical advice and best wishes to friends and strangers alike. They give generously of themselves so that others affected by melanoma can find the information and support they need to live as long and as well as possible.

Over the years, the MPIP has grown significantly. This year the MRF will have more than 3 million visits to our website, and the MPIP is the most heavily visited part of our site. This makes it very clear that for every post that you may read or reply to, thousands more are visiting anonymously and benefiting from the information being shared.

Many of you have talked about how much you rely on this site for the information and community that it hosts. In that spirit I invite you to consider making a #GivingTuesday donation to support the work of the MRF. If you are interested and are able to do so, simply follow this link to our donation page:

http://bit.ly/2gfqnBL

Please do not feel obligated to donate in order to continue to participate in MPIP. This site has always been and will remain free and open for anyone who benefits. While financial donations greatly support the work of the MRF, I recognize that many times the most important contribution you can make is to offer your time, compassion and experience to someone in need – it’s a gift we see every day on this forum. Whether you make a financial contribution, or give of your time by offering support and counsel, or simply read these posts and learn more about your journey—thank you for being part of a very special community.

Tim--MRF

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My husband has been fighting since July 2015. So everything has went pretty good , until September 26th . He was feeling quite right , arm and leg felt heavy. Went to primary, was sent right to hospital, found brain metastases. Fast forward, he has radiation and started keytruda. Completed 2 keytruda, the third will be today. But he had a fell last Friday, feel to his knees and could not walk . So here we are back at hospital still not walking good so not ready to release. Dr wants to add vemurafenib and cobimetinib with keytruda. He has been on mekinist and taflinar prior before brain mets. Wondering everyone's thoughts on keytruda with vemurafenib and cobimetinib? Anyone done this combo and luck with brain mets? I would appreciate any words on this. I truly am at a loss . Thank you

Cathy Jewell

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Anonymous's picture
Replies 9
Last reply 11/30/2016 - 7:37am
Replies by: Carole K, DebbieH, cc, CindyCo, Kim K, Tim--MRF, Anonymous, Fen, Janner

Hello! I have been diagnosed with melanoma stage 2 b in September 2016. While I am in a panic and I want to ask, is  someone here who had been diagnosed with mm at least 15-20 years ago and NED? Maybe 30 years? Is it real?  Maybe someone has such positive stories...

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/29/2016 - 11:56am
Replies by: Anonymous, Tim--MRF

Would a in situ melanoma reoccurrance on the scar of my wle be considered metastic disease.

My onc has possibly mentioned this but i thought metastic would have a depth on the melanoma not have no depth.

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Aaron's picture
Replies 4
Last reply 11/29/2016 - 9:38pm
Replies by: Mat, JoshF, Gene_S, Hukill

Just to give a quick background.  Stage 4.  Ipi/Nivo combo.  Pituitary damaged after 3rd ipi infusion.  Vitiligo all over arms.  Lots of Prednisone and missed a couple Nivo treatments due to reactions. 1st scan everything shrunk by 1/2.  The latest scan (2nd scan) most everything stayed the same with slight shrinkage to one or two nodes.  

I realize this is still good news but in a way it is disappointing news compared to last time.  I am a little worried that the slow down of my progress might be a sign of becoming a partial responder and not reaching NED.  This may seem "Brattish" because I am exhibiting a lack of patience or that I'm not thankful for the progress I did make.  I am very thankful, but we all know that we all want good results and we want them asap!  Mainly I'm just wondering it the rollercoaster of good scans and bad scans are typical.  Has anyone experienced a breakthrough scan where they didn't have good results and then in another scan or two they were back on track?  

 

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sarah.brannon's picture
Replies 4
Last reply 11/30/2016 - 9:10am

So I finished my year of Interferon 9/30/2016. Since then, I've missed 3 periods (I'm not pregnant), and I'm having hot flashes and night sweats. I'm doing a "wellness beyond cancer" clinic at the hospital next week to deal with gynecological issues, so obviously I'm going to talk about this with them, just wondering if this is something other women have experienced after treatment. I'm 28, married, with no kids yet. It's weird.

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/28/2016 - 11:15pm
Replies by: Janner, Anonymous

Hello everyone. I was originally diagnosed 3b from a mole on my back in nov 2015. The excision opened up and left a good size scar on my back after it healed.(2in high 5in long) I spotted a small spot on my scar and pointed it out to derm.(size of a freckle) The spot removed and came back insit u melanoma. I had a pet/ct scan that came back clear as of today. What would be my next options to treat this melanoma in situ . Since it was on the SCAR can melanoma insit u spread? I mean does insitu make a difference between normal skin and scar tissue. I always look forward to hearing from everyone especially Janner. There are so many knowledgable people on this site. Thank you

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Anonymous's picture
Replies 5
Last reply 11/29/2016 - 4:49pm
Replies by: _Paul_, jpg, Ed Williams, Mat

August 2014 diagnosed from completely healthy to stage 4.

Mets in lungs, liver, spleen, stomach, shoulder, adrenal glands, axilary glands.

Took Keytruda in January 2015 every 3 weeks.

Worked immediately and over course of 25 treatments and 5 CTs most everything disappered.

PET/CT just revealed that I have a new 3.6cm x 1cm tumor in small bowel.  Wasn't there in July.

1) Was never a complete responder as CTs still showed small stuff even though most disappeared.

2) REALLY disappointed that it looks like one got passed the goalie and it spread to a new area I hadn't had mets before (small bowel)

3) Consult this week but assume plan will be to resect the small bowel and stitch it back up, removing mass.

4) I have TIL cells in storage at MD Anderson from 2 years ago.  They'd like me to come back to harvest these new cells in bowel.  Wonder if I can stay local (live in a major city with good cancer center) and have the T-cells shipped to them?  I guess I'll find out at the consult.

5) Do you know of situations like mine?  Keytruda works for 25+ treatments, responded incredibly well but not to the point of NED, then new sizable hypermetabolic tumor pops up?

Obviously fortunate to be a responder.  New developments are frustrating like we all experience with new news.  Thanks for any feedback and take care!

Matt King

Diagnosed Stage 4, July 2014

MD Anderson, Dr. Patrick Hwu

IU Health Simon Cancer Center, Dr Ted Logan

Currently responding to KEYTRUDA since January 2015

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Gene_S's picture
Replies 5
Last reply 11/29/2016 - 9:37pm
Replies by: sweetaugust, Anonymous

 Efficient Skin Cancer Treatment (Melanoma) – Cancer is a result of DNA mutations multiplying too quickly for your immune system to catch up. Caused mainly by inflammation, the thymoquinone and thymohydroquinone properties in black seeds have been found to be effective in it’s treatment. Known mainly for it’s anti-inflammatory properties, black seed oil has been proven to prevent and treat many different cancers, including skin cancer. This is again due to the potent anti bacterial and anti inflammatory properties it contains, the 2 main properties of black seeds.

The way they work is by targeting your white blood cells, thereby boosting your immune health and killing cancer cells.

https://www.diamondherbs.co/101-black-seed-oil-benefits-to-consider-whil...

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

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newmanmark's picture
Replies 11
Last reply 12/1/2016 - 11:44pm

Hello,

I was having success with the BRAK/MEK combination I was on for the past year and a half.  However, on my last scan it showed tumour growth of the single tumour I have on my pancreas.  I am in Canada.

My oncologist has now given me 2 options:

1) Clincial trial with Nivolumab + Ipilimumba

2) Nivolumab on its own

Initially I chose to go with the clinical trial as the response rates seem to be higher.  However the adverse events for this combo seem extreme and there's a high likelihood that I won't even make it through the first 4 doses due to it's toxicity.  Depending on what happens it could actually prevent me from continuing beyond the 4 weeks on Nivolumab alone.

I question whether or not I should just try Nivolumab on it's own to try to avoid these complications.

Any thoguhts out there?  I have read some pretty amazing success stories with these drugs, yet I have also read some horror stories of side effects.

Thanks

Mark

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/29/2016 - 9:41pm
Replies by: sweetaugust, Rocco, GreenWally, Anonymous

Recently diagnosed after a routine skin check with nodular melanoma stage III. Located in the Boston area. I am looking for recommendations / opinions on the best melanoma doctors in the Boston Area. 

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Skunkwheez's picture
Replies 12
Last reply 12/6/2016 - 11:19pm
Replies by: _Paul_, Anonymous, Skunkwheez, jennunicorn, Casitas1, Hukill, Gene_S

Hi everyone! I've been lurking on here for a couple of weeks and have learned so much from all of you! My Dad (age 62) was diagnosed with Melanoma on the back of his head (small bald spot). Initial biopsy showed 1.3 mm but he had a wle and sentinel biopsy done. The lymph nodes were all clear but the tumor was actually 4.6 mm! That put him at a Stage 2b. He is scheduled for a pet scan in a couple of days but I am curious if there is anyone else that had such a thick melanoma with no lymph node involvement? And a clear pet scan?

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