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
Anonymous
Replies 2
Last reply 7/2/2015 - 1:20am

Hello all - I'm going in tomorrow for a SLNB and WLE on my right outer leg.  Had the initial biopsy a few weeks ago and it as a T3a.  What can I expect for recovery?  Will I be up and moving around right away? Will it take some time before I'm back to regular exercise?  Wishing you well.

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My husband's treatment with Pembrolizumab was successful, but he has become very depressed. The treatment did affect his thyroid and he does take synthroid now to replace what his body can't produce. According to recent blood tests, his thyroid level are now normal. However, he remains depressed.

It is so weird, you'd think he'd be very happy to be in remission.

Has anyone else run into this?

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cavsnut's picture
Replies 4
Last reply 7/1/2015 - 11:56pm

Some good news to share with everyone...had my one year scans today and groin lymph node ultrasound....everything came back normal...still stage 3a....probably the happiest day of my life

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Rita and Charles's picture
Replies 6
Last reply 7/1/2015 - 11:38pm
Replies by: Rita and Charles, Anonymous, Patina, Thandster, Ed Williams

Is this better than nivo or ipi ?

Rita

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jamieth29's picture
Replies 9
Last reply 7/1/2015 - 11:15pm
Replies by: jamieth29, Bubbles, maryb-z

First of all i want to thank everyone for responding and thank the users who regularly post here. My name is Jamie I'm 36 year old male with 3 young kids. I have been reading this site for 2 months. Here goes, Diagnosed late April...lymphendectomy on left groin mid may, pathology came back with lymph node involvement in 5/13 nodes. Two weeks after surgery i had a in transit legion show up right by area where mole was. Had in transit spot resected. June 17th had ct scan that showed enlarged iliac node...positive biopsy so back to surgery i went. Surgeon removed 5 deep iliac nodes 3 were positive. Still 3c as it is still regional nodes. I am aware of all the numbers and stats for my situation as i feel I've done as much research as i could have since I've been diagnosed. I have ruled out interferon as we know the the odds of it working. I've narrowed things down to a vaccine trial at uw madison that i admittedly dont know much about other than its a cdx 1401 a cdx301 and the ny-eso-1. Or a trial of ipi/nivo in adjuvant setting. What i am asking for thoughts on is advice on the ipi/nivo as adjuvant. what statistically might be better? There are some results on ipi in adjuvant setting but not much on nivo. The kick in the ass is my local doctor has applied to my insurance company for ipi as adjuvant and they have verbally agreed to pay for it as 3c even though it is not fda approved. He presented trial data of the 951 patient trial of ipi as adjuvant. So my dilemma is if the 50/50 shot of nivo might be worth it. If i join the trial i have a 50% chance of getting ipi in the trial and would have to drive 3.5 hrs to get it when my local doc is 15 min away. I also am not 100% sure of implications for future use of nivo/ipi if i progress to stage4 but feel i need to take the biggest swing i can at this before it becomes metastatic to other parts of my body...if its not to late. Also just want to thank the knowledgeable posters here again and hope you realize how much you are helping people even though not everyone that has been recently diagnosed starts a post. The last 3 months i cant even explain the fear that has envolped me. The thought of leaving my kids has been almost to much for my mind to bear. The uncertainty of the future hurts but i know i will do everything in my power so that doesn't happen. It is such a powerless feeling to go from a fit hard working blue coller guy that never had a thought of dieing young. To staring death in the eye. Any questions for me i will answer quickly.

Thanks again Jamie

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Kelly---11's picture
Replies 6
Last reply 7/1/2015 - 10:22pm

Hi guys 

hope every one is well! Iv been really struggling the last few days I watched one of my best friends get married at the weekend and was an amazing day, I now have got down as I can't even imagine getting married or having kids it's making me really sad. When does this get easier? I'm still so New to this and with new subq still popping up I am loosing faith and I don't want to be like this. What helps you guys? Xx

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Thumosity's picture
Replies 7
Last reply 7/1/2015 - 9:35pm
Replies by: Thumosity, Colleen66, Squash, Anonymous, Jubes

I was diagnosed(6/17/15) with Amelanotic melanoma on my left forearm.I have a Breslow thickness of at least 1.1 and at least a Clark's Level III.I will have a wide excision surgery on 7/13/15 with Sentinel node biopsy.Also I have Hemophilia Factor VIII so I'm a little more concerned about the surgery(I am definitely having the surgery!)and the potential wound issues.

My dermatologist said that she didn't have any major concerns when she biopsied the round eraser shaped/eraser colored growth on my arm(more of a cosmetic thing I guess)so it came as a pretty strong shock that it was melanoma!Thank God she did the biopsy.I guess until I know what stage I am I need to just chill...it's a little hard to relax right now.

 

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Bubbles's picture
Replies 15
Last reply 7/1/2015 - 9:15pm

Hope all goes well with your treatments and treatment options this week!!!  You are such a gift to all of us.  Hang in there! Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Polymath's picture
Replies 5
Last reply 7/1/2015 - 7:57pm

Something happened to me recently that I thought was worth sharing.  The short version of my long story is I have progressed through BRAF inhibitors, then yervoy, and was finally thrilled to be qualified for anti-PD-1 treatments.  After 4 infusions, I was feeling like this too was just not working, so thanks to this board's advice, I visted my melanoma specialist who practices several thousand miles away.  I'm always trying to stay one-step ahead with a plan B and only see the specialist occationally. The specialist recomended I discontinue Prednisone, get another scan right away, and then another after about the 7th dose and finally determine if it was doing any good.  Seemed like a good plan except when I got the results of that first scan soon after my 5th dose of Keytruda, they compared it to the prior scan when I came off Yervoy and because it did show progression, my regular onc said insurance would deny any further treatments and just like that, I have been yanked off Keytruda.  Since some would argue that anti-PD-1 takes time to work, I feel a bit cheated out of that opportunity.  The other side of that coin is that if I was not a responder, better to find out sooner than later. Of course the real big problem now is there are no other FDA approved treatments, so my only options going forward are trials.  Just wanted to send out this warning flag as this series of events really caught me by surprise.

 

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Replies by: Bubbles

Hi all,

I posted about a week ago regarding my Dad who was recently diagnosed with Stage 4 melanoma in his brain (3-7 mets) and lungs (one tumor).  He started whole brain radiation right away and will finish up the 10-day course of that tomorrow.  The doctors are hoping that this intensive radiation will shrink some of the brain tumors so that we can try gamma knife/SRS on the brain mets later (if they have decreased in size/number).  In any case, we are close to getting the BRAF test results and so I want to make sure that we know our next set of treatment options now that his radiation is almost done.  We did have one visit with Dr. Thompson at SCCA but, without BRAF, we weren't able to settle on a course/sequence of treatment.  And, after reading a number of posts in recent days, I want to ensure that we sequence the treatment as well as we can (especially given that his recent radiation round may help with efficacy of some of the drugs, some of these treatments need to be administered in particular orders per Medicare, some may have different efficacy given his "treatment naive" nature, etc.).  From what I understand, here are our options:

1)  If BRAF +, he should try to get on the Dabrafenib (Tafinlar) plus Trametinib (Mekinist) combo - which he can start right away.  Also, in order to prolong resistance from developing, he can take it episodically, correct?  Are there any other drugs or methods to hold off resistance?  Would you recommend starting with these drugs over ipi/the anti-PD-1 options or delay these to be used as a last resort?  From what I understand (and please correct me), these drugs show results faster than the ipi/anti-PD-1 options, he can continue to take steriods while on them (since he has a bit of swelling in his brain now), etc. - so those are some of the positives.

2) If BRAF -, he would have to try ipi first and have it fail before insurance (Medicare) would allow him to try Nivo or Keytruda.  Or, is there a way to get Nivo or Keytruda as a first line option (similar to what was just approved in the EU)?  Are any of the anti-PD-1 drugs more effective for brain mets?  Or, rather than going for single drug therapy, would it be better to try to get him right into a clinical trial for the ipi/nivo combo if he is BRAF- (given its higher efficacy but yet also worse side effects)?

What else are we missing?  We should hear about BRAF in a few days and so want to best understand our options and the pros/cons of sequencing - in order to be informed of whatever treatment comes recommended next.  What else do we need to be asking the doctors before we figure our treatment plan?  What other factors should we be considering?  For example, the doctors never told us that this whole brain radiation is a one-time deal in his lifetime - that would have been helpful to know upfront.  Had to make the call on that over only a few hours - very tough...   

Any advice and thoughts would be appreciated!  So helpful to have found this community...

Carrie 

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arthurjedi007's picture
Replies 31
Last reply 7/1/2015 - 12:26pm

I've had a good 11 month run on keytruda plus 8 spots of radiation. Still it hasn't been enough. Stuff keeps growing. Since it's doing some good and it's fda approved I can stay on it until I get on something else.

Basically 7 are shrinking. All at or near radiated spots. 5 are growing including the t10 that almost paralyzed me last year. One new one is on or in my left kidney which is suprising because it is new and pretty much all my other new tumors in the past started in the bones and grew out. The rest of im assuming around 20 stayed the same. So I'm glad keytruda is fda approved because trials would have kicked me out. The docs were actually debating whether to give me it today and decided to because it is doing some good. After all keeping 20 tumors at bay and other stuff is pretty good but not good enough. Kind of weird how each scan shows things growing but they are usually different spots. Also by growing 3 of those 5 are declared that because of the uptake not thst they see a larger mass outside the bone. The other 2 are declard that because of the uptake and soft tissue mass is larger. The new one on the kidney is also a tissue mass.

im very suprised the scan wasn't better. But I'm glad finally Siteman did a fairly detailed report that at least listed each tumor shrinking and growing. Also it could have been worse but I was expecting much better. Way better than the first 3 meds where everything kept growing though.

Now to scramble and get on a new treatment. Siteman has 30 open slots for the ERK trial. It is BVD-523 by BioMed valley discoveries. It is part 2 of phase 1 where they have already figured out the dose and are expanding to more people. Depending on which nurse you believe either 1 patient has had a partial response or 2 patients have had partial remission. That is with about 16 patients none of which are at Siteman because they haven't recruited anyone there yet. About 5 places have this trial. The side affects so far seem very similar to zelboraf. Since neither zelboraf nor the taf mek combo shrank anything I don't think this is the right trial for me but my doc does but he was out of town so couldn't talk about it. 

Tomorrow I guess I'll call university of Chicago for an appointment with dr Gajewski or dr Luke and try to finally go there and try to get into their opdivo pd1 anti lag3 trial or see what their thoughts are on what I should do.

Also TIL with dr Rosenberg is still an option but based on what Catherine said I'm not sure if I should pursue that.

im disqualified from the huntsman virus treatment because of bone metastisis.

Since keytruda is not enough for the internal stuff the trials for lesion injections with pd1 are not a good choice.

A lot of the other trials like pd1 anti kir and stuff I'm disqualified for cause I've had pd1. Although I may be missing something.

im not seeing a Ido pd1 combo or anything that might be good unless I'm missing it. Wdvax is still phase 1 and I've heard nothing about how good or bad it is.

So I dunno really what to do. Quite awhile back a lady on here posted how the pd1 anti kir trial failed her and she decided to go to md Anderson. I never heard what treatment she did or how things turned out. Her way of thinking she already did a pd1 combo so she needed something else. So maybe they have something good I just don't know about.

I just don't want to make a bad decision but I don't see any really good options. Since the t10 is getting worse I feel I only have one last shot at a treatment. I have to make it a good one or I'm probably not going to make it further. Maybe instead of Chicago I should just go to md anderson or memorial Sloan Kettering. But those typically require flying and the assistant doc couldn't say if my spine was ok for it or not based on the pet ct. They would need a mri. But he did say there was no mention of narrowing of the spinal canal and stuff. Plus I can still sit and touch my toes fine which I couldn't do last year when I was almost paralyzed. So I dunno. Also I get wore out fast after only a couple hours traveling. Also I need lots of food and drink or I get weak. Plus my parents who have been taking care of me are not getting any younger. So I just don't know what to do.

Thank you everyone one for your prayers and best wishes. I wish I had better news.

Artie

 

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Steph001's picture
Replies 4
Last reply 6/30/2015 - 11:22pm
Replies by: Steph001, Janner

I have been recently diagnosed with superficial spreading melanoma. I had a mole on the back of my arm that my husband thought looked "funny". I also had a black, irregular mole on my temple so I figured I'd get them checked out. The mole on my temple was atypical and the one on my arm was melanoma. It's a Clark level II and the Breslow depth is .47. I see the doctor next week to have the tissue around the biopsy removed. 

I am now super paranoid and there are about 5 other "spots" that I've found that I'm concerned about. Is it common to have more than one primary melanoma at once? I feel like I'm being a crazy person! 

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Rita and Charles's picture
Replies 7
Last reply 6/30/2015 - 8:59pm

So how we eat to improve health............just laying it out there that I am a past pastry chef and there typically is ice cream in the fridge!  A friend who is a nutritionist has shared with us some big NO NOs on how we should be eating.  We eat well now, but indulgences exist......

How has everyone changed their diet in this new "cancer enviornment"?

Rita

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Lindsay6694's picture
Replies 1
Last reply 6/30/2015 - 6:42pm
Replies by: Janner

Freaking out...Just diagnosed on friday with a clark level 2 melanoma on my thigh. after byopsy the depth is a .19 what exactly does this mean stage wise? I go in on thursday to have it removed, and they said i would just be monitored after removal.

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