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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ecc26's picture
Replies 16
Last reply 1/31/2016 - 9:42pm

I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search

I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding. 

I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities. 

The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital. 

Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated

 

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emagdnim83's picture
Replies 9
Last reply 1/14/2016 - 8:20am

Just sharing the end of our story.

My father passed away on 01-01-2016 after battling stage 4 melanomas for 8 months. After being diagnosed with mutliple bleeding brain mets early October we had 2 really good months (compared to the time with zelboraf) with hospice care at home but without further cancer treatment (he had serious heart issues after one single dose of nivolumab). He didn't have any permanent cognitive issues after the bleeding had stopped and dexamethasone took care of the swelling. Doctors were really suprised how good he recovered. So he was able to enjoy all meals, drinks, could walk a bit but we all knew it wouldn't last forever. Then, some days before christmas he developed hemoptysis and was really short of breath the whole time. To fight his fatigue he received a blood transfusion which unfortunately didn't help anything. He didn't suffer great pain thanks to low dose morphin drips and after he became bedritten he got a morphin pump together with lorazepam. Final days were really tough for us all - the mechanical-like breathing in the last few hours will haunt me forever.

Now, i am not sure about hospice care only. It really was a great help and he could die at home, surrounded by his family. He didn't have to suffer pain i think. But, for the last 2 days or so i don't know because he couldn't answer any more. Doctors assured us he wouldn't have to endure pain with his medication.

On the other hand, with all the great news about new treatments all around it was especially hard for me not to do anything and i think i will forever think about the "what if..." and "maybe we should've continued nivolumab". Sure, his quality of life with zelboraf was really bad and even nivolumab knocked him down with fatigue, loss of appetite and heart issues... maybe even the bleeding was caused by it? We don't know for sure.

Thinking of Artie. He replied a lot to my posts and gave advice how my father could maybe make it until christmas. Artie literally tried everything and had to fight a lot of side effects and pain. He lost the fight, too. This reminds me that there still isn't a cure for lots of people even with all the good news about immunotherapy all over the media...

So, for all late Stage 4 Warriors out there: please write down your will how you want to be treated when you can't decide for yourself any more, for example when brain mets hit really fast or suddenly begin to bleed. Just in case. It is super hard for relatives when they have to decide wether to continue treatments or going into hospice care. 

Thanks everyone around here for giving good advices and sharing lots of information and even good news in some cases. Its good to hear that new treatments help more and more people fighting this ugly, horrible disease. Keep up the fight. 

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jbronicki's picture
Replies 6
Last reply 1/14/2016 - 2:21pm

Hi all,

Just passing along some positive news.  We got my husband's scan results at MD Anderson yesterday and still No Evidence of Disease.  We have done the wait and watch since his surgery 2 years ago.  He was initially thought to be Stage 4 nodular metastatic melanoma (scary words to hear) since his Breslow depth was 19 mm (I'm not missing a decimal point :) ) and there was no overlying epidermal component.  He does have the NRAS mutation.  I still remember getting his initial pathology back and seeing that everything he had (breslow depth, Clark level, mitotic rate, etc) was at the highest end of the spectrum and I would research and he had every indicator of immediate negative outcomes.  Our doctor here knows us as the couple who argues (we argue all the time at the doctors since I'm a researcher and my husband sees no point in researching, he is a "it is what it is" kind of guy).   It's hard to believe we are two years out.  As I was waiting on the 9th floor where the Melanoma wing is located, I always look around and think that maybe one of the MPIP bulletin board members is waiting too.  It's sobering to see all the people in the waiting room and hoping they are responding to treatment.  And of course, my thoughts drifted to Artie sitting in the same spot just several months before and it hurts the heart.   I just wish good stuff for everyone.  I'm going to lay off the research for a little bit, since our doctor told us that any adjuvant treatment and vaccine trials are not an option (too far out from original surgery and they would not risk the side effects at this point with NED) so we are in wait and watch path for the foreseable future.  We have a 7 yr old and now we have been approved for adoption so hopefully more good stuff to follow.  

Cheers,

Jackie

Jackie <3

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Asc08's picture
Replies 3
Last reply 1/13/2016 - 9:40pm
Replies by: Asc08, Fen

hi all - new to this board so please forgive me if I am doing this wrong. My dad was diagnosed with stage 2c back in September 2013 on his head. He had surgery and a years worth of interferon therapy. All was well until a few months ago a new mass appeared on his pet scan behind his ear. He just had a neck dissection to remove the mass and lymph nodes. 6 came back with melanoma out of 61. They are recommending radiation pending another pet scan in a month to make sure nothing else shows up. 

Wondering if anyone here has had radiation to the neck area? Truthfully I'm not sure what I'm looking for other than trying to see if anyone can share a similar experience. 

thank you

 

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scots's picture
Replies 3
Last reply 1/15/2016 - 7:54am
Replies by: scots, kylez

I'm looking for anyone with a MEk mutation. What treatments/drugs are you taking. Any experience with this mutation.

scot

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scots's picture
Replies 11
Last reply 1/13/2016 - 11:14am
Replies by: scots, Bubbles, BrianP

I may be starting a clinical trial using glembatumumab - vedotum. I was wondering if anyone had any experience with this drug? Side effects/ opinion.    I'm braf negative. The oncologist is also trying to see if she ca get my insurance to pay for MEK Inhibitor.  Any opinions the MEK inhibitor?

 

thanks,

scot

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/13/2016 - 1:21pm
Replies by: Janner, Scottw, Anonymous

Anyone have a good experience with oncologists in Oregon. Looking for suggestions.

Rebekah

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Tessie64's picture
Replies 1
Last reply 1/11/2016 - 7:09pm
Replies by: Janner

I had a small mole (6 mm) removed from a toe by punch biopsy three weeks ago. Pathology came back as lentiginous junctional melanocytic proliferation with mild to moderate atypia. I was told that I need to have a complete excision done; appointment is in a month from now.

The area is still very sore. When I look closely, there seems to be mole left around the punch incision. Could this be new growth already, or do they only take a small  specimen of mole for testing? If it is regrowth, should I call doctor for sooner appointment? I wanted to say above that this a fairly new mole (started as tiny dot about 4 years ago) that has been growing.

Waiting is hard. Should I be concerned that after the excision, the pathology could come back as melanoma, or would they have told me that the first time?

thanks

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Christine.P's picture
Replies 7
Last reply 1/16/2016 - 11:33am
Replies by: jamieth29, _Paul_, Julie in SoCal, dfeng, BrianP, Anonymous, geriakt

A brief history: I am stage 4A with current tumors in my left breast and near my sternum. I started Opdivo alone (insurange dragged its feet on the Yervoy combo and my doc didn't want to wait. That's a whole other story.) in November and will have my 5th dose tomorrow.

Scans last weeks showed "significant decrease in size in breast tumor." My surgeon wants to take it out anyway. (The ultrasound tech told me it was "half the size" - even though she's not supposed to tell patients anythins. Not sure about the other tumor; will find out the CAT scan results at my appt. tomorrow). I just recovered from several procedures - removal of two primary tumors, one on my leg so deep I needed a wound vac and skin graft, full axial lymph node removal, biopsies of the breast and sternum tumors, and a port implant. I just don't want more surgery right now if I don't have to. 

I know everyone's experience is different and what works for one may not work or be best for another, but I am just curious about others' opinions on surgery if tumors are clearly shrinking with chemo. 

Thank you!

Christine P. 

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My mother has battled stage 4 since October 2014. Successfully got WBR and taf-mek combo for 6 months, then started opdivo while continuing low dose taf for a further 6 months. During this time, when mek was onboard as well, she was hospitalized with hepatitis. 

Opdivo and low dose taf worked until October 2015. Then, we added Yervoy 2 doses, stopping taf. As my mother got fluid buildups and new multiple brain mets, we restarted low dose taf and added Temodar. That also didn't work and she is now also too weak to receive more Yervoy. The only option we can think of is restarting mekinist with the thought that maybe the aggressive cancer progression in her body is using the Mek pathway, its 2nd best option after it has found a way around RAF. Due to the high toxicity of 3 treatments at once, Mekinist was dropped from her regimen 6 months before she then progressed on Taf.

Has anyone had experience progressing on taf (tried twice) and then reintroducing mek? We understand that Taf/Mek is the same pathway but a Google search of diagrams of the pathway seem to suggest that the cancer tries RAF first, then MEK, then ERK (in trials?). 

Also - those who have tried Temodar, any knowledge as to a) how quickly it worked and b) how soon it is flushed out of the system? Google says halflife is 1.8 hours. Right now our last options to buy time are Temodar alone or Mekinist alone. 

 

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knittingirl's picture
Replies 1
Last reply 1/13/2016 - 4:44pm
Replies by: _Paul_

I followed a ipi/nivo treatment at the end of the year 2015, but after the third infusion I had to stop because of diarrhea and raise of liver enzyms. I have been on prednisone since December 14th at 60 mg /day and the doctor had to increase the dose at 80 mg per day on December 30 th as things got worst. He prescribed me also some budenoside.

Over the last 3 days, my diarrhea has improved and we have started to taper the prednison. I am now at 70 mg/day.

I have few appetite and the poor diet made me loose 8 kg. I am tired but stay positive as my diarrhea gets better and I still don't feel anymore the tumor in my groin. My liver enzyms are normal. I had also some hypothyroidism but it is now under control.

I heard that the tapering of prednisone can be bad. Also, when I will be recovered of this colitis, my goal is to start nivo only but I read that it can trigger also diarrhea.

I am now on medical leave, and I was wondering when I will feel better so I may go back to work . Can you work in a stressful environnment ( I teach in a demanding private school) on low dose of prednisone ?

Is anyone would share his or her experience ?

Thanks

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jamieth29's picture
Replies 13
Last reply 1/10/2016 - 11:13pm

At home recovering well from surgery and thought i would share the results with everyone here. As some of you know i was diagnosed may 2015 3c. I have actually never been n.e.d. since I was diagnosed. I have always had "local" lymph node involvement and many intransit spots that kept coming back on incision line. I was going to have surgery again in August to try and stop intransit legions again but pet scan showed another lymph node was active. I started B-raf inhibitors August 11 after we decided that we needed something to give surgery a chance to stick. watched spots on incision disappear. Path came in and still showed microscopic foci of viable melanoma. However the report said node showed signs of regression. Report states... together these findings demonstrate involvement of the lymph node by multiple foci of metastatic melanoma on a background of melanin containing histiocytes (i.e, melanophages) these findings likely represent partial regression of a metastasis either spontaneous or by treatment. The other 6 nodes were clear. The resection of my leg showed no active cancer. It was a big surgery on my leg the pelvic dissection took 1 hour the leg surgery took 10 hrs. A week and half after I am able to walk with no crutches. I see my doctor Tues to go over report and next steps. He did send me a message the he reviewed with his team and it looks like things came off "well" whatever that means. It has been 3.5 months since I've been scanned so I know that will probably be next. Nobody is sure if things will "stick" after all this but I definitely think it's a good option to try. I think there may be big potential giving braf drugs as a neo adjuvant. Why not if it can kill some cells and a person is resectable or potentially resectable after the drugs why not try. Hopefully this can give me some disease free time and maybe a chance of ned for good. Time will tell I guess. I have been off drugs since Christmas. Tues I am going to talk To Dr Luke about continuing the braf drugs but I think he is not wanting to do that. Anyway there it is...Boom! Maybe this can help someone out there. Any questions ask away. Hope everyone is well.
Jamie

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pookerpb's picture
Replies 9
Last reply 1/11/2016 - 11:56am
Replies by: pookerpb, Kim K, Anonymous, kylez, Janner, Fen

Havent posted in a while. Our new firewall protection at work does allow me to post or comment, only read...uugh since the sign in process changed on thie board.

My husband (45) State IV  has now failed on Ipi and now Keytruda as of this week. Has been on Keytruda for a year now with signigicant growth on his last scans. Stopping Keytruda. With 3 failed treatments, we are facing whether or not to try IL-2 either alone or with the Veg-F if thats the arm he would receive. We refused IL-2 3 years ago since Ipi was to becomb available to us. Doctor says now is maybe the time to try since he is still not too symptomatic and fairly healthy for now. Eventually when health declines which we feel wont be long, he wouldnt be able to tolerate the treatment and could be disqualified.

Would like to hear from anyone what your IL-2 expereince is since response rate is so small and side effectsw can be so severe.

On days not in the hospital in between hospital stay, how did you feel? Were you able to go out and do things outside of the house or too sick?

 

Krista

 

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katie1's picture
Replies 9
Last reply 2/4/2016 - 9:36pm

Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi.  He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion).  He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium.  Following the 4th dose he developed hypophysitis.  He was treated with high dose steroids and all his hormones returned to normal.  However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time).  He is currently doing really well and is very thankful for the trial option.

I wish all of you starting on Ipi the best.  Report all side effects even if they appear minor to your oncologist right away.  Make sure you are being treated by a melanoma specialist with experience treating these side effects.

Kate

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