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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Hi, 

Finished the Ipilimumab treatment successfully 3 years ago. Now - high PTH and enlarged parathyroid. Anyone experienced this side effect and if so - what is the treatment?

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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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Polymath's picture
Replies 9
Last reply 7/3/2015 - 10:40pm

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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Hi everyone

my name is Kelly I'm 29 from highlands in Scotland uk.

im new to this site although not completely new to melanoma but a bit clueless! I had primary removed from my arm in 2013 stage 2a, nodule appeared 2014 beside original site removed and still 2a clear ct scan, may2015 routines an showed 5 small tumours to my liver no lyphnodes involved braff wild,

i started ippy on the 1/6/15 about a week after I started getting horrific bruising with lumps, I have spoke to serval people about this all but one seems to think it is a side affect, my surgeon whom I spoke with last night thinks they are little tumours called subq.

im really just asking all you super warriors if you'd have had subq pop due to ippy or do you think they would have popped up regardless? Also I was wondering what everyone's thoughts were on all the new clinical trials and what has been most successful? 

Much love

kelly xx

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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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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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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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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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Jubes's picture
Replies 6
Last reply 6/30/2015 - 5:13pm
Replies by: Jubes, kylez, Kim K, LaurenE

Hi all

i am doing really well. All tumours have disappeared on keytruda except the main one in my lung which has shrunk from 7.9cm at its biggest to 3cm x 1cm now. Just had my pet and it is 4.2 SUV but was 10.2 SUV this time last year. I am on steroids for the side effects from the keytruda. I have really bad arthritis type pain through my body. Much worse in the night and morning. Drs are thinking stay on keytruda and steroids as long as side effects are manageable. But some time in the future resect the lung tumour which is in the right lower lobe. Has anyone had this operation who could give me some advice? ( Drs say that in 50% of cases like this when they resect there is actually no tumour left and the brightness on the pet is the immune system working)

thanks

anne-Louise 

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affguy's picture
Replies 11
Last reply 6/29/2015 - 7:56pm

I've been almost entirely a lurker here the last couple of years, with very few posts, but have still very much appreciated the information that others have shared.  Sadly, today it was confirmed that my Dad's battle is ending shortly after failure of BRAF+MEK treatment.  He began it in February of last year, and last month he had throat and shoulder tumors removed (despite an otherwise clean PET scan).  Last week he suddenly became incredibly fatigued, lost his appetite, and had brain mets found on imaging.  Today the neurologist who viewed his MRI told us there are no further treatment options available due to the extent of brain mets and areas involved.  He begins hospice care tomorrow and is not expected to last more than a few weeks.  Fortunately for him, this is not expected to be a physically painful process, though we will have morphine available in that event.  It also seemed to be kind of for the best to see this coming over the last week, which dulled the shock a bit.  This has been and will continue to be an eye opening experience for me, as my experiences with death to date have all been of the sudden and unexpected variety.  It has also raised my awareness, as this morning I made a dermatologist appointment for an unusual lesion/growth on my arm that I'm pretty sure is nothing but am trying to be better safe than sorry.  We can shoulda/woulda/coulda my Dad's initial pursuit of medical care and the path that care has taken (interferon from 9/12 to 6/13, BRAF+MEK from 2/14 to today), and that's probably a normal step of grieving, but if nothing else it has increased the attention my family pays to protecting our skin and watching out for abnormalities.

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Rcmcd09's picture
Replies 2
Last reply 6/29/2015 - 5:31pm
Replies by: Janner, Rcmcd09

Hi there! I'm sad to say that in my college years I used tanning beds off and on for 3 years. I never tanned before, nor have I since then as I'm too busy. A few years ago I noticed a mole on the side of my foot. Because it's on rough skin it was hard to see the shape, but it looked symmetrical, wasn't changing and was one color. The size was within reason as well. I noticed a few days ago that one small dot of the mole has become darker brown - - change! I know that MANY moles on feet are dangerous as they're many times malignant melanoma. I'm catching the change pretty early, but can't get into my dermatologist for 1 month. I'm so nervous... Could it spread that fast before I can have it biopsied? My Grandpa grew up when sunscreen wasn't a big thing and he struggled with skin cancer for a long time. Thanks!

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Rita and Charles's picture
Replies 32
Last reply 6/29/2015 - 2:39pm

Met with Dr. Greg Daniels today, Charles seeking second opinion.......I think that part of me hoped that seeing a melanoma specialist, he would give a better news story......and this whole journey would be over.  First off, Dr. Daniels spent so long with us - he is an amazing doctor, very knowledgeable and truly went through so much with us.....and yet we still come home reeling, trying to recap, listening ot the tape and make a game plan.  We walked away with more questions, more to think about but closer to making decisions. 

It seems the more we learn, the more we veer away from the lung surgery/lymph node removal.  We still need to have the results of a brain MRI, and areas of the most recent PET scan that need to be followed up on - Dr. Daniels was concerned about activity on the leg.  

I am finding that this forum is such a great resource to help us understand.  All of the stats and the percentages blend and blur together.  From both Dr. Daniels and our oncologist Dr. Kosty, leaning heavy towards immune therapy.   

Ipi alone - from my notes, 10% of people respond to Ipi and the length of time that you can be on it before tumors become resistant is 10 mos?  Once Ipi stops working, you advance to Nivo or Keytruda?

Nivo or Keytruda alone - better response rate 30% and can be tolerated for 2 years?

Ipi + Nivo Combo - even higher response rate and 88% of those that resopnd 2 years?

Side effects for all sometimes are too toxic and need to come off.....

Having the 3 choices - What would you do?  

Or, if he has no symptoms right now.....do you wait until there are symptoms?

Thanks for your help in explaining things to me!

Rita

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/29/2015 - 11:29am
Replies by: Anonymous, BrianP, kylez, arthurjedi007

Has anyone had success on Keytruda even after being diagonised with leptomeningeal metastases/ spread of melanoma?  My loved one is to start Keytruda on Monday 12/15.  Wondering if it is going to help the LM?  Thank you for any information.

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Anonymous's picture
Replies 2
Last reply 6/29/2015 - 11:05am
Replies by: Jenncat0402, Happy_girl

My dermatologist sent my tissue biopsy to Castle Bioscience for them to run the Decision DX-Melanoma test.  It came back as a class 1.  Haven't had my SLNB yet.  Anyone have experience with this gene expression profile test?  Is it reliable?

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