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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BrianP's picture
Replies 11
Last reply 9/11/2017 - 4:24pm

I'm at MDAnderson right now.  Flew in yesterday morning for scans and met with Dr. Tawbi this morning.  As far as MDAnderson and getting to and from the airport I had no problems.  To be honest I couldn't tell anything had happened here from my transit from the airport.  I guess there's still a lot of problems on the west side of the city.  Everything seems pretty smooth at MDAnderson except for the Infusion Therapy department.  I waited 2.5 hours to get a port accessed and a lady next to me waited 4 hours.  Not sure if that was Harvey related or not.  The port access service is always bad but not that bad.

Scans went well.  Still stable with one tumor slightly smaller.  I'm 9 months out from my CAR-T therapy and 6 months from my last Ipi infusion and seem to still be responding.  Dr. Tawbi is extremely pleased.  Says he will be even more optimistic at the one year mark if things are good and extremely optimistic at the 2 year mark which really made me feel smart because that's exactly what I told my wife before he walked into the room.

I wanted to share this trial with the board.

https://clinicaltrials.gov/ct2/show/NCT03131908?term=%22melanoma%22+%22M...

Dr. Tawbi and his colleagues seem to be very optimistic about this trial at MDAnderson.  If someone has progressed on PD-1 this would be one I would consider.

Brian

 

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sscottmusic's picture
Replies 1
Last reply 9/10/2017 - 9:57pm
Replies by: Janner

How do I post pictures in this forum 

Stan

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Sharon93065's picture
Replies 11
Last reply 9/10/2017 - 3:52pm

Thank you in advane for the help you are going to give  me, you always do.  My liver panel was thru the roof so sadly my 4th Opvio/Yervoy was cancelled and put on the Prednisone 5pack.  5 for 5 days 4 for 5 days eetc. Yesterday I was on the 1/2 for 3 more days.  Had my weekly blook work done.  Then my Dr called to say my liver numbers were up slightly and put me on Prednisone, 3 per day until he tells me otherwise. 20 mg each.  The queston is do you know i you that will delay the Opdivo every two week maintenance?

i just saw white spots on my hands, i hope I am not starting to get Vitiligo Might be scarring from all the itiching when i was getting rashes. 

Sharon

 

 

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thinkingofu's picture
Replies 14
Last reply 9/10/2017 - 2:35pm

Dear All, 

Hope you are well

My mom is to have her first infusion tomorrow (finally) (yevroy+opdivo) and we were wondering if you could please share some tips as to how get through it as easy as possible. In term of food, drink, etc. Thank you xxxx

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CindyJ's picture
Replies 4
Last reply 9/10/2017 - 12:52pm

Hello all ~ I wanted to share my Mom's good news regarding the trial study using Genomics. Background, she had a deep ulcerated melanoma on bottom of her foot and spread to toes. Removal, skin graft, and CLND in groin and pelvis. Wait and see. A year and a half later fast growing melanoma found in lymph node further up pelvic chain (iliac) and possible lung met.

She received three Pembro infusions (immunotheraphy) beginning in late April then was switched to Ibrance (target therapy) in July. (The Onc didn't believe Pembro was working). After two pill cycles of Ibrance, her pelvis tumor has shrunk in half with SUV going from 17+ down to 6.3 and her lung nodule shrank with no uptake (could have been infection).

During prior testing, she was found to have three separate mutations that current cancer drugs are available for. Ibrance is a breast cancer drug that stops cancer growth by inhibiting CDK 4/6, she is CCDN1 amplified.

The Onc was rather shocked it worked so well so fast, and I'm not all that certain that Pembro didn't play a role, but we're both so elated. If immunotheraphy doesn't work for you, you may have a mutation that can be treated. Seems to be the next great step in cancer treatment. Best wishes everyone!

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Jdc's picture
Replies 7
Last reply 9/10/2017 - 12:36pm

This may sound foolish to many, I had 1 round of yervoy on 7/20 10mg, about 2 or 3 weeks later severe headaches. Diagnosed with hypophysistis, have been on 100 MG prednisone for over weeks, they tried to wean down but headaches came back severe again so I'm back at 100 MG and still have the headaches just not as severe. I recently got statement from insurance company, my 1 round of yervoy the hospital charged the insurance company 957,003.49 A million dollar treatment? I was appalled, I do not want to sound ungrateful but I honestly don't know if I can feel comfortable receiving this treatment at that cost.doe's this even sound right? I hope to not offend anyone, I want to live as long as possible, I have a wife and 2 kids would live to have grandchildren. This is ridiculous though I'd rather that money go to cure some child's cancer

Joe

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Spl25's picture
Replies 6
Last reply 9/10/2017 - 12:11pm
Replies by: Edwin, Mat, triciad, Spl25

Really looking for some positive news regarding mets on my pelvis and femur. I'm stage 4. They're very painful and don't appear to be responding like my other tumors to PD-1. Has anyone had a response on BRAFi or any other intervention? This is truly disappointing and the pain is keeping me from working and enjoying life as much as I'd otherwise be able to. 

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trigirl67's picture
Replies 3
Last reply 9/10/2017 - 6:51am
Replies by: Sharon93065, Janner, Anonymous

I am stage iv and just found a dark spot under my big toenail. My questions are:

is it possible to be melanoma when I'm already stage iv,

would it show up on a PET scan or could it be missed? 

Its been there almost three months now.  

Trinity m Ballare

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Anonymous's picture
Replies 5
Last reply 9/9/2017 - 10:38pm
Replies by: SOLE, Anonymous, Raluca, Bobman

First off, I'd like to ask if it's okay for me to ask a few questions here. I've not been diagnosed with melanoma yet, but all the dermatologists seem to think it's just a matter of time. My first dermatologist visit was for acne when I was about 13, and that was also the first time I had pictures taken of some of my moles and received the sun safety lecture. I'm very fair and have had dozens of 2nd degree sunburns; we actually thought I had a sun allergy for awhile frown

My last dermatologist visit was during the summer where my mom had two Basal cells cut off and I had another skin check. She was instructed to go to a derm once every year, but I was still told to come in every 6 months, which seems kind of ridiculous considering I've never even had any skin cancer and I'm only 21.

My main question is about whether anyone else has a high number of atypical moles and if your melanoma resembled them. I know people always say to look for the ugly duckling, but for me, most of my moles are ugly in various different ways. I missed my last derm visit so I'm scheduled for one next summer, I was just curious about everyone's premelanoma stories. 

Also, a side question to those of you with multiple moles: how do you monitor all of them? I know change is a big one, but I can't monitor all my moles and I cant even see the ones on my back. I also imagine that with pictures all my moles would get mixed up, since I probably have over 40 just on my legs.

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thinkingofu's picture
Replies 5
Last reply 9/9/2017 - 3:06pm

Hello everyone x

Just a little update. Mum had her firs yervoy+opdivo combination a couple of days ago. No side effects as of yet. Hope this is a good thing and does not mean that the treatment is not working. 

Also, they will be giving her first SRS treatment in a few days since those mets in her brain are not behaving well

Hope you are all well xxx

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Has anyone experienced a met ( egg sized) to the epitrochlear lymphnodes?  If so how did the surgical removal and recovery go?  Your help would be greatly appreciated!!!

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guynamedbilly's picture
Replies 4
Last reply 9/8/2017 - 9:45am

I just had my second injection last Thursday. I've had a headache since Monday evening. I did contact my oncologist and she said to try ibuprofen and call again if it persited past the weekend. That did help, but it is still hurts if I don't take it today. I'm wondering how bad pituitary gland swelling hurts so I can know what to watch for. Anyone have any experience with headaches in Novo?

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RitysMom's picture
Replies 10
Last reply 9/8/2017 - 8:32am

It's been over a month since I've posted...caring for Kristine has become all-encompassing for me. Kristine tolerated four ipi/nivo treatments, although not without complications. In fact, it seems as if it's been one complication after another and we're just trying to put out fires in order to keep her alive long enough to show a response.

She has deteriorated in many areas: her upper body has significant weakness now, in addition to her lower body...that has caused us to go to only using a hoyer lift to move her; she has also deteriorated neurologically...she's severely lethargic and is really confused.

She had an MRI/CT done on Tue 8/29 to see if there's been any response to the treatments. That evening, Dr. Freeman called saying that the radiologist found a dvt in her leg and a pulmonary embolism. We called 911 and went to our local hospital with the idea that she'd transfer to a hospital where Dr. Freeman could see her in the following days.

A filter was placed to catch the blood clots...thought we were done. Nope.

*She became almost comatose...unable to wake up, but does respond to pain. They have tried everything to get her to wake up: drain in her brain, taking her off fentanyl patch. She's breathing on her own, heart rate is ok.

*Her neutrophils are zero...they put her on Neupogen last Wed...not seeing any response.

The drs here believe her current state is due to the tumor burden in her brain and nothing can be done.

On top of all that, Dr. Freeman says her MRI shows a 20% reduction in tumor size...she's actually responding to treatment!

Dr. Freeman had been in daily contact with the drs here up until Saturday. I'm hoping she weighs in tomorrow on where we are. 

Not sure anyone can help, I'm just feeling we're at the end.

Cindy 

Mom of the beautiful Kristine

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Beth Reilly-Stark's picture
Replies 1
Last reply 9/8/2017 - 8:28am
Replies by: momsmole

Hi everyone, 

I had a move removed from my right thigh back in June of this year. My wife thought it felt a bit unusual, so I went to get it checked, it was removed 4 days later. 

Got sent an appointment through for two days ago after not hearing anything in regards to results, the dermatologist confirmed it was melanoma in situ. Had an appointment with a plastic surgeon yesterday who is scheduling me for a wide local excision and skin graft, and said if all goes well I won't require further treatment. 

My emotions have been all over the place, I realise I'm very lucky it was caught when it was but I think I'm in shock, it's all happened so quickly. I have an appointment with a cancer nurse in a few weeks time as well and have been told what signs to look for in future. 

Has anyone else had a similar situation to mine? I have a lot of moles and I'm worried in case I miss something. 

Thanks for reading,

Beth

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/7/2017 - 11:54pm

Anyone have any experience with large tumors in abdomen area?  My husband was rushed to the ER last week with the starting of a distended abdomen and other symptoms. He was clear 3 months previous. Very very scary and in the hospital for a week. He is now on Taf/mek. 

Any info would be appreciated. 

Thank you. 

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