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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TexMelanomex's picture
Replies 19
Last reply 10/13/2018 - 6:22pm

Warriors,

I am happy to report that my scans yesterday remained clear and I remain NED. This marks the third round of clear scans so I’m somewhere between 6-9 months NED at this point. Hard to say when the “magic” happened, I just know that it has been at least six months. God is good. 

Now, for the warriors still deep in the fight, know this. The battle is winnable, the enemy has vulnerabilities, and the Warrior mindset is key. Stay in the fight. 

Your warrior brother,

Tex

Tex

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neilarama2017's picture
Replies 3
Last reply 10/13/2018 - 11:10am
Replies by: Pwest55, rpm773, Threefitty

This is mostly just informative for anyone on or considering starting Opdivo.  

So after being NED for 1 year from stage 3B with 1 month radiation.  I am finishing up my Opdivo treatment this week.  I was getting an infusion every other week for 10 months and opted to switch to once a month for the last 2 treatments as it has recently become available.  I have noticed no new side effects from the change of treatment times.  The only side effects that I did encounter durring my journey were pimples here and there, a small rash after my first infusion, headaches (pretty strong ones, especially right when waking up) that were cured with tylonol and moderate tiredness in spirts.  I really did not change my diet that much as that much as im not a veggie kind of guy.  I did abide by the very limited use of alcohol and not smoking as I like a cigar every once in a while.  It will take 3 months from this point for the medication to be out of my system for the most part, then hopefully I can start to get my energy back.  I have to say that vs. just sitting and waiting this was a great option for me.  Everyone is different but I feel that it has increased my hope factor which in turn helped to cure me.  That, support of friends and family and faith have gotten me to the point that I am at.  Loving life and trying to enjoy every moment.

 

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Bethharte's picture
Replies 3
Last reply 10/12/2018 - 8:25pm

Hello All, 

  I originally was diagnosed with IIIA SS Melanoma of the left leg with 3 microscopic cell ins in SN, completed the full 52 weeks of InterferonA and have been NED since 2010, unitl now. I found a 2cm lump where I had a RLND and my Oncologist is sure this is recurrent Melanoma. Ultrasound of the mass shows it to be 2cm. I have not had any other testing as of yet or scans for the last 3 years. 

I have searched for information regarding prognosis, current therapies ( my Oncolgist) is testing my original tumor for BRAF as is was not available when I was first diagnosed and the need had not arisen until now. 

Does anyone have any wisdon they can offer who have gone through a similar or like experience. 

 

Beth

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STL Mike's picture
Replies 6
Last reply 10/12/2018 - 4:01pm

I've been lurking w/o registering for about a year now so decided to finally "show my face".

They recently changed the way they do patient info on my centers website so I'm still figuring out how to access it all.

My first run in with melanoma was in the mid to late 80s when I had an area excised over my left shoulder blade. I was never staged as far as I know and I remember they injected me with a dye that was the made from the shell fish flamingos ate that made them pink.  I was told no problems and life went on.

In June of 2015 I was seeing my primary and he was concerned about a rather substantial weight loss over last six months.  Went and had one of those swallow this nasty stuff so we can look at your insides exams.

Well my digestive tract was normal but they saw a shadow where my liver was.  So back for another test. CT scan this time.  And yep something fishy with liver. Next step biopsy.  And now staged as IV metastasized to lungs, couple bone areas, adrenals, and lymph glands as well as the liver. BRAF - 2.  Brain MRI negative. They just found a sign saying "This Space for Rent".

I got in to a stage 3 trial for Yervoy/Opdivo combo. Started in Oct 2015.  Did the every 3 weeks with the combo then every 2 weeks with just the Opdivo.  Aside from being tired all the time was going pretty smoothly.  Was able to arrange treatments/labs for late in afternoon so minimal time off at work. 

Jan 2017 was NED for the 2nd time so treatment was stopped.  May 2017 scan showed spot on lung. Another biopsy which was positive and back to treatment.

Dec 2017 had been NED again for 2 scans and was developing side effects from treatment.  Losing toenails, skin lesions.  Saw dermatologist  and consensus was it was related to the Opdivio.  Treatment stopped. Been on Prednisone varying dosage since then fight the lesions. Looks like I'm winning that. Down to 5mg a day and see Doc Mon and hopefully will get off this stuff which has it's own Wheel-O-Side effects. In the interim in Jul 2018 had core punch biopsy for spot on my neck.  Aug 2018 had an excision on neck with clear margins which was in situ.

Next scan is 24 Oct. Really keeping fingers, toes, and eyes crossed hoping still NED.

I have followed everything on this forum and I have found hope that although there is no "cure" we can keep melanoma at bay. I am grateful for all the links to info that everyone has posted. Wealth of info in each of them.

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aldrichdesigner's picture
Replies 6
Last reply 10/12/2018 - 3:01pm

Well my stable status was short lived and frankly probably never even existed in the first place, they just weren't looking in the right place.

After I had another spinal compression fracture, they told me there wasn't anything they could do that any further surgery to my spine would probably make me worse or paralyzed. Well pain just kept getting worse and I ended up with a trip to the ER for stomach issues and they found a small spot that looked like progression on the CT so my Oncologist decided to order a full PET scan which I had yet to have at this time. We had only relied on CT and MRI up to this point.

Well the results came in and my disease has progressed to my lower spine and hip bone which is what is causing my tremendous pain in the sciatic area. It also lit up in my shoulder which I was afraid of but had just told myself that I had injured my rotator cuff and was just going on with my day but nope there is Melanoma in the bones of the shoulder.

So, more radiation. Here we come. I had really good luck the first time so we are going to give it a try in these spots since they weren't treated before. So they were able to get my sim done the next day so I'm hoping they send me my schedule for treatment today so we don't waste anytime. I'm ready for some pain relief.

I went from a fairly pain free lifestyle that included me walking with a cane sometimes and sometimes I could even walk unassisted and now within about a week's time, I'm unable to walk without a walker and even that is so painful that I can only go short distances before needing my wheelchair. I forgot how much it can hurt/suck when your really sick.

Once radiation is complete (2-3 weeks), they are switching me to Yervoy(ipi)/Opdivo. I've seen a lot of people having great success with this combo so I'm hoping it's my magic bullet. Pembro seems to work the same for everyone. If it doesn't get it within a year then it's not gonna get it and it's time to move to something else.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/12/2018 - 1:29pm
Replies by: JennH, MMH

Hello,

     I want to see if anyone might have any advice for me.  I am a 33 yr old fair skinned female, who visited a dermotologist (for the first time) last month after noticing a weird mole like thing on my calf. The derm did not know what it was, and did a shave biopsy.

   They called last week and said it was a "junctional spitz nevus with moderate to severe atypica, close to the peripheral shave border" and recommended I see a plastic surgeon for removal.  I had a second opinion today (just from reading pathology report) and he said we could wait and see on it, or he could remove it in office. 

    I am planned to have it all removed by this dermotologist in 2 weeks, since I don't care about scarring, but I am concerned reading about Spitz Nevus and that they are often misdiagnosed melanoma.  Does anyone else have experience or advice regarding treatment?  Does this need closer monitoring than a different type of atypical mole?  Are they likely to call me back after this second removal and tell me they need to continue testing?  I am panicking and I don't know if it's truly warranted.

 

Thanks for any help or advice you can offer.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/12/2018 - 10:24am
Replies by: Anonymous, KellyH, caman, Bradley75, WithinMySkin

Hi everyone, what does nodular appearing mean?...Isnt a nodular a nodular?..are their things that look like a mass or nodular but its just something else?  Has anyone come across this before?..Thank you!!

1.  No definitive evidence of metastatic melanoma within the abdomen or pelvis.
2.  Nodular appearing left adrenal gland and nonenlarged but prominent mesenteric lymph nodes are seen, these findings are nonspecific. Attention on future follow-up imaging is advised.


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Jennycrn1's picture
Replies 4
Last reply 10/11/2018 - 5:25pm

Had my lung biopsy 3 days ago and waiting for path results. Was looking back at old posts and comments about drug therapy, and several people mentioned they had a lung resection. I asked my doc about this instead of wasting time with CT guided biopsy...he says that's not the way to go. He needs to be able to measure progress/ effectiveness of the drug by measuring the size of the lung met. If the lung met is gone by surgery, he won't know if I'm on the right drug treatment. That makes sense, but why did some of you have yours surgically removed. Is that the better plan? Maybe biopsy first and then have a bigger surgery? Thanks...Jenny

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Raco's picture
Replies 14
Last reply 10/11/2018 - 7:12am

I have not posted any updates in a while, because life happens.
I am official at my half way mark for Opdivo treatments. ( #13 )  Whoop Whoop. (Treatments every two weeks)  26 total
So far the treatment side effects have been on and off, upset stomach, nausea, heavy breathing, rash spots, aching bone / muscles and Fatigue.
The fatigue has been bad at times, but I have been working full time and between my wife and I take care of our two special needs daughters Olivia 20 and Chelsea 24. So this sure does not help with the Fatigue.
So as I mentioned, I am now ½ way through my 26 treatments, so far, I have  had two Brain MRI and one PET scan.  My second PET is this coming Wed. 9/26.
Right now, my worst symptoms are Fatigue, Rash Spots all over, and bone/muscle pain.
But it beats the alternative. GOD is good.

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/10/2018 - 9:25pm
Replies by: WithinMySkin

Hi to all. Prayers to everyone and only Have positive thoughts, pls  

White 40 y/o  male diagnosed in situ on my back with clear margins almost 4 years ago.

I am going to see my dermatologist next week for 6 month check up. For some reason I feel more nervous,  more time goes by, more  nervous I am . I visit this forum once in a while, and some people went from in situ to stage 4.  Is it really possible?  If yes, how much time?

Thank you all.  Be strong!

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Momofjake's picture
Replies 15
Last reply 10/10/2018 - 1:30pm

Okay, here we go. 

Braf meds are over. Our hospital lost all our specialists. So I got to Dr Hamid in LA. He got us in within 2 days and spent hours with us on TH. So we are now in LA from Utah looking at trials. TIL will be hard due to the surgery to remove a tumor. I want to hear how TIL worked for you guys and how you did going through it. I know it’s very rough. 

They also have a “3 arm” trial with LAG-3 and anti-PD1. Ipi and pembro have never worked great for Jake. We will be here until Tues night. Hoping he chooses so he can get consented. It’s been a whirlwind with more brain mets we had to get stable with SRS and the ever fun bad news. Any age stinks, but doing this from 17-21 robs you of some big stuff. It’s crappy. 

He us however bouncing back and we will have some fun at the beach! 

Thanks! Prayers for all as always! 

Kerri

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iskitwo's picture
Replies 7
Last reply 10/10/2018 - 11:40am

I have been on Opdivo every other week for almost 6 months. I have had very few symptoms...fatigue mostly.  The first month I was on it I had a horrible bout of reflux and he changed my meds from an over the counter to pantoprazole 40mg that is time release. After that change no more major reflux issue. I have notice the last month or so that my throat/back of my tonged is irritated. I am wondering if this can be a reaction of the opdivo to possible inflammation in the throat area......or maybe some other reaction. It has not gotten any worse but also not getting any better. Of course I will talk to the doc next time I am in the office but wondering if anyone else has had any type of throat issue while on treatment.

Missy

 

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Hi All,

   Bill is in his sixth year of this disease. After being stable for almost 3 years he has lung nodules again. He is starting the Cleopatra regimen for breast cancer since he has the her-2 mutation (Sloan Kettering testing) and immunotherapy stopped working. 

   I greatly admire people on this board who remain positive despite difficult circumstances. I’m having trouble getting my fighting spirit back so I can help bill. Please help.

 

Maureen 

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Mk517's picture
Replies 2
Last reply 10/10/2018 - 11:12am
Replies by: doragsda, JuTMSY4

Sorry this is a little long... I have never posted before but have found this group very helpful since my diagnosis.

I was diagnosed in January with stage 3 melanoma with unknown primary. I had a large lump under my arm which was biopsied. I then had an axillary lymph node dissection. My initial pet scan had, what my doctor called, "some minor areas" that lit up but nothing was enlarged so it could just be physiological activity and that they would be treating me as NED - adjuvant treatment of taf/mek, but I couldn't tolerate the mekinist so now I'm just on tafinlar.

Fast forward now to my 6 month scan... CT is ok but shows an "indeterminate lesson" on my liver so they recommended an MRI. Had my MRI with contrast which now shows 2 lessons on my liver - 1 "most likely a hemangioma" and the second "indeterminate". And also an indeterminate lesson on my spleen. So they are recommending PET.

In addition to the obvious reasons of worried, I'm concerned that the PET will lead to a false positive. There's nothing concerning in any of my abd/pelvis lymph nodes, so would they melanoma really skip that and go to my liver? I'm 35 years old with 2 young kids, and while I know that the worry will never completely go away, I was hoping that I could "move on" after my year of treatment.

Any similar experiences or encouraging words are welcome! Thank you all for reading.

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VinceMart's picture
Replies 14
Last reply 10/10/2018 - 8:47am

Hi fellow fighters,

I was wondering if anyone has any updates as to how they are doing on Braftovi/Mektovi.  I know there are only a few of us currently on this treatment.  I have been on it since early July and have a scan in a few weeks, however the lump in my arm has not decreased in size at all and I now have another.  I haven't seen anyone new mention they have tried this and am looking for some feedback is possible.

Take care everyone,

Vince

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