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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Anonymous's picture
Replies 5
Last reply 3/26/2017 - 8:42pm
Replies by: Anonymous, Bubbles, Ed Williams

I am a Phase I clinical trial participant with a BRAF V600K mutation at the University of Michigan involving a combination trial between Dabrafineb, Trametineb, and GSK2141795.  I am one of four out of eleven patients whose metastatic melanoma has stabilized at U of M during this trial.  GSK2141795 is owned by Novartis, but was manufactured by GlaxoSmithKline.  

Novartis refuses to manufacture any more GSK2141795 and we run out of meds on April 30.  

Does anyone have any extra GSK2141795?  Or know any details regarding the sale of GSK's oncological division to Novartis in 2014?

Novartis included the information regarding GSK2141795's unavailability in the trial paperwork we all signed, but it came along with a verbal promise that another drug was under development and would be ready to take its place.  It's not ready and they don't want to manufacture any more of it.

This is such an emotional rollercoaster; I run from being grateful for having a few extra months to live, to feeling really angry that a drug company knows how to solve this issue, but refuses to do it.  I was hospitalized for 6 days with allergic reactions and risked blindness three times with dosage adjustments to prove out this drug.  Now it's working and there isn't any more of it.

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/26/2017 - 7:11pm
Replies by: FeelingLonely

Really hoping I can find help here.

My mom is diagnosed with Stage 1B, melanoma. Miotic rate 1mm. Breslow - 1 mm. Her primary tumor is on her face, near her right eyebrow /eye. She had a wide excision to remove it, then a biopsy on it. Biopsy came back positive and doctors said there is bit of left over tissue that needs to be removed. She is scheduled for another surgery next week. Her first surgery and the biopsy was about 2-3 weeks ago. 

She is complaining of her red eye being itchy now and looks like it's increasingly bothering her. Looks like there is slight swelling as well. This is reported information since she lives across the sea from me. I had her send me a picture, the eye otherwise seem fine to me. Nothing really to catch in the pics.

i asked her to go back to th doctor tomorrow to discuss. But I was wondering if anyone ever experienced this and has any guidance or advice. Thanks!

 

 

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ajpeterson's picture
Replies 1
Last reply 3/26/2017 - 6:27pm
Replies by: Anonymous

I have been recently diagnosed with melanoma in my lymph node in my groin.  I have had a PET scan and brain MRI that have both been clear.   I am not any meds related to the melanoma, but I was wondering if anyone else has experienced any symptoms like this related to the melanoma?  Or perhaps it's just anxiety.  

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DocPain's picture
Replies 4
Last reply 3/26/2017 - 5:03pm

I had melanoma 10 years ago and after surgery and 5 years of scans and MRIs I was clean with minimal likelihood of recurrence.  I was just diagnosed with melanoma again last week.  Nothing was visible because both spots are in my left lung.  Currently waiting advanced report to determine if there is any mutation.  Talking about immunotherpay. 

Doc Pain

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mrsaxde's picture
Replies 17
Last reply 3/26/2017 - 4:49pm

Hi everyone! I haven't been around this forum much the last few months, but things are going well for me at the moment and I'm generally feeling good. I've been getting Keytruda since a year ago last July and infusion number 27 (I think) is this Friday. It's working slowly for me, but it's working. Spots on my skin and in my lung have either been stable or shrinking for months....actually we saw changes for the better in the spots on my skin after the very first infusion.

Which is why I decided to drop by with this question for others receiving Keytruda. How long have you been on it? How many infusions have you had? 

I've just been curious about other responders and the length of time they have had to stay on Keytruda. At the cancer center where I'm being treated I was one of the first to start getting it, so the nurses there tell me I've been on it longer than anybody else they've seen.

-Bill

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rick1981's picture
Replies 11
Last reply 3/26/2017 - 4:11pm

Hi everyone, My wife (Stage IV since June '14) has started on Keytruda Wednesday this week and she also got a shot of Xgeva to strengthen her bones. She was in a pretty good physical condition at that point, walking every day, feeling well - but she has gotten severe bone/joint pains and has had fever & sweating spells since. I have looked at the archives here at MPIP and have found that Pembro can cause arthritis-like symptoms and the Xgeva could cause the fever. But if you have any more thoughts, I'd be happy to hear as it's just a shock to see her move from such a good state to being bed-ridden after the start of Keytruda. Just hope these are side effects (and not directly due to the melanoma; she had "tumor fevers" in June) and that these are signals of the therapy working. It’s scary to see her change so quickly... Thanks for any advice!

 

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Momofjake's picture
Replies 20
Last reply 3/26/2017 - 1:41pm

Hi friends,

Have not been worrying about SRS on Jake's 6mm brain tumor because after 30 months of this stuff I know better. Worrying doesn't change a thing!! In fact Jake was just in my room. Him and his brother just got back from the gym and they are eating crazy amounts of breakfast at bed time!! He looks so good! He is really cheerful. 

Hoping this radiation is as easy as they say and that he doesn't have too much down time. He has had TAF, Pembro and ipi in the last 18 months. Hoping this combo is somehow the magic that lets Jake go start his life! 

Hoping tomorrow is okay!

Prayers to all,

kerri

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/26/2017 - 12:58pm

Hi everyone,
I'm curious if anyone had switched to a plant-based diet? And if there is any benefit related to a diet change? Thanks!

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Tnscin84's picture
Replies 6
Last reply 3/26/2017 - 1:37am

Hello all. I come here for support for multiple people I know that have been diagnosed with MM. I pray for all of you daily. 

my Hx: 2009 Spitz nevus benign and removed completely and then some. 

Then ive convinced myself (after multiple people have been diagnosed around me) that I'm going to get or already have it. Because I had a few blistering sunburns, I used the tanning bed intermittently in college and have lots of little moles--haven't been out in the sun but twice since 2009. 

I had a moderately atypical one removed from my left shin almost a year ago and they got the lesion completely--and said if I wanted to have further margins I could for piece of mind but it wasn't necessary. So, with my anxiety--I had it removed which showed nothing in that skin.  Then a tailspin of anxiety (and hospitalization from panic) later--I have had multiple biopsies (15) that I have begged for--they have either come back "solar lentigo" or "nevus with architectural disorder with no significant cyrologic atypia).  I go to a derm who helps run the melanoma clinic.  I sent him this picture but it's the weekend and I'm having a panic attack. I'm not sure if this is normal pigmentation process around the scar or melanoma /cancerous. I can't remember if I noticed it last month. 

 

 

We just went theough IVF and after reading all the stories about pregnant ladies on here--I don't even want to try to get pregnant now even though my derm said pregnancy does not cause melanoma--it just might bring it out faster if it's already there but since I do monthly skin checks, am about do not mole mapping, and I see them every 4 months (bc I am paranoid), he said I would likely catch if early/in Situ IF* that would happen. I am in therapy for OCD/catastrophic thinking  I'm hypervigilant because of the experience biased or knowing people with it.  I try to remind myself most everyone has gotten blistering sunburns and overexposed to the sun but not everyone gets it. But it's just exhausting and I'm just waiting for it to happen.  very unhealthy I know.  I like reading all the information posted on here that's educational for sure.

 

Thoughts on this pigmentation at the bottom of my scar? Normal process 9-10 months out? I go Thursday to see him for a different issue but it's he weekend and I'm having a panic attack

 

http://i1347.photobucket.com/albums/p710/Anna_Cousar_Mechem/IMG_7754_zps...

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JoshF's picture
Replies 22
Last reply 3/25/2017 - 9:27pm

Thought I'd drop in and say hello as it's been awhile. I hope everyone is doing well. I'm still trying to recover from TIL and have been very weak & lethargic. I was actually supposed to go to MDA this week for the Keytruda portion of the trial but too weak. I'm going to withdraw and do Keytruda at home. I've never been so physically impacted by this disease and the treatment. I had one sub-q shrink to nothing but that's it. It's been about 6 weeks since TIL infusion so I'm still holding on to hope this works. Not sure with performance status that I'd have many options left. I hope everyone is well, I saw Brian good news, saw Jake is doing good but having SRS...I didn't look past 1st page but I think of you all often. Blessings 

Josh

Let's work for better treatments....for a cure!!!!

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I am waiting anxiously to hear from NCI to see if I am going to get into TIL trials. In the meantime, Abraxene has kept tumors from growing but I feel like it's bringing me down physically. I also made an appointment at Sloan Kettering in April just to see what they have to offer. Anyone seen Dr Shoushtari? I have been amazed at how smoothly things have gone with both places. Thank the Lord! I am praying and waiting to see what is my next step. It is a little scary, but I am excited to get this behind me. It's helpful hearing from those who have paved the way through TIL. I read all of your posts even though I don't always respond. You all have helped me gain courage to get to this point.

LisaG

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BarbaraF's picture
Replies 1
Last reply 3/25/2017 - 8:22pm
Replies by: debwray

My husband is early Stage IV melanoma. Next week he begins a clinical trial with Dr. Ann Silk of the Cancer Institute of New Jersey. 

Phase 1b KEYNOTE-200 (STORM study): A study of an intravenously
delivered oncolytic virus, Coxsackievirus A21 in combination with
pembrolizumab in advanced cancer patient

In this study, sponsored by Viralytics.com, a cold virus will be injected into his tumor. 

A similar trial is ongoing at Memorial Sloan Kettering, with the virus delivered intravenously, 

We have high hopes for the reported success of this trial but are mildly concerned about whether injecting the virus into his cheek could possibly damage his facial nerve. The tumor is just below his ear. 

any feedback? 

 

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ajpeterson's picture
Replies 11
Last reply 3/25/2017 - 4:08pm

I was diagnosed with Melanoma a few weeks ago, it is in my left lymph node in the groin area.  I had a think mole removed on that same side on my lower back 2 years ago and it was removed with "clean margins". 

I have a meeting with an oncologist who specializes in melanoma next week, and I've been told that I'll need to have it removed, along with others around it...plus something else? (immunotherapy, chemo, etc).

I'm a 3rd grade teacher, and I'm trying to figure out if I'll still be able to carry on with my job, taking minimal time off for surgery and treatment.  Do you think this is realistic?

 

 

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mrsaxde's picture
Replies 8
Last reply 3/25/2017 - 2:34pm

Well, I had my most recent scan, a PET this time, last Friday. Saw my oncologist today. I knew the minute she walked into the room that the news wasn't good.

It seems Keytruda has managed to kill the spots on my skin and in my right lung. Neither of those places turned up as hypermetabolic on the PET. But what did light up is the mass noticed on my December CT scan, on the hilum of my right lung. Also several lymph nodes in the area are hypermetabolic. So it looks like Keytruda did the job, but at some point I have apparently stopped responding, and that mass that my oncologist wasn't terribly concerned about is now the issue.

She is taking my case to the tumor board on Thursday, and the plan currently is to continue with at least my next infusion of Keytruda, which is scheduled for Friday. My oncologist mentioned the possibility of radiation. Depending on what she tells me on Friday another visit to Dr. Sharfman may be in order.

Down but not out. Fortunately, unlike just a few years ago, there are still options remaining. And I am nowhere near ready to give up!

-Bill

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welcome32's picture
Replies 3
Last reply 3/25/2017 - 1:48pm

My daughter was diagnosed with melanoma in August. 2016.  Her melanoma was just under 1mm and had it completly removed.  She also had the setiinel lymph node removed which came back with micro cluster of cells.  She is being seen at Sloan Kettering in NYC.  At this point she is not in amy treatment, but is due for a brain MRI, pet scan and ultra sound of under her arm where the Sentinal lymph node was removed.  She did have an ultrasound in December of that area and it came back clear.   After the Surgery she had numbness under her arm, which I know is normal.  In any case for the last week and a half she has been periodically feeling aware that something is different in her armpit.  She is not sure if she is just noticing this because the feeling is comng back in her arm or if it is new pain.  She feels a subtle ache in the area in her armpit where the lymph node was removed.  in the last few days she has felt the sensation of it being swollen, though it doesn't visually look swollen and there are no visible lumps.  It is tender to the touch.  She lives near my other daughter who touched the area that she fees is swollen and she did notice that the tender area feels slightly firmer that\ the unaffected side.  We have an appointment scheduled in 3 weeks for all the tests.  Just feeling so so anxious.  Any suggestions, advice.......

 

 

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