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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1derdog's picture
Replies 4
Last reply 7/18/2015 - 10:18pm

My husband had three doses of Keytruda & the latest scan showed an increase in the tumor in his pancreas.  The doctor now wants him to start Yervoy & Keytruda as soon as possible.   Has anyone else moved hat quickly off of Keytruda to the combo treatment? I was under the impression that Keytruda needed time to work.  The doctor said if the combo doesn't work then he'll give my husband targeted radiation.  In hopes of some shrinkage so they can resect the tumor safely.  

Can anyone tell me if they've had any similar e perience with this sequence?

thank you

wife (caregiver)

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/21/2015 - 2:07pm
Replies by: tschmith, stars, dfeng

I was diagnosed and succefully treated stage 1 melanoma in 1995 at the age of 15.  I have never had a reoccurance or in 20 years.  Now I have this new "spot" that appeared shortly after my last derm appointment.  It has no color just a hard little bump on my arm. 

 

Should I get this looked at before my yearly spot check???

 

I'm feeling a little paranoid because it looks nothing like any picture I have seen for Melanoma.

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braunerk's picture
Replies 1
Last reply 7/17/2015 - 3:37pm
Replies by: Anonymous

I am currently being seen at the University of Arizona Cancer Center. Banner Health bought them and all 3 of the melanoma specialists have left or are leaving. I was receiving great care but now the only person I can see is a nurse practitioner or a oncologist that is trained in urology obiviously not close. If anyone can suggest another doctor in Arizona or with 8 hrs of Tucson I am interested. I am currently stage 4 and have had ippi and currently on Keytruda and have done radiation on 2 mets in my lungs

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I am currently being seen at the University of Arizona Cancer Center. Banner Health bought them and all 3 of the melanoma specialists have left or are leaving. I was receiving great care but now the only person I can see is a nurse practitioner or a oncologist that is trained in urology obiviously not close. If anyone can suggest another doctor in Arizona or with 8 hrs of Tucson I am interested. I am currently stage 4 and have had ippi and currently on Keytruda and have done radiation on 2 mets in my lungs

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I am currently being treated at the Arizona Cancer Center associated with the University of Arizona. Banner bought them and now all of the melanoma specialists have left or are leaving.  I was receving great care but that is going away.

The only option there is to be treated by an oncologist trained in another form of cancer. If anyone can suggest a doctor in AZ that is a melanoma specialist please let me know. I will have to travel but want to keep it to 8 hrs or less away from Tucson.  I am currently stage 4 and have had ippi and am currently on Keytruda and have done radiation on 2 of my lung mets. I am hoping to try t-vec when it comes out.

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cbeckner98's picture
Replies 4
Last reply 7/22/2015 - 12:29am
Replies by: _Paul_, dfeng, Anonymous, tschmith

Hi all,

I've posted a few times - we're up in Seattle and my Dad has brain mets and one tumor in his lungs.  He's also BRAF negative and so we've seen Dr. Thompson at SCCA twice in order to help us chart a treatment plan.  In any case, last week Dr. Thompson recommended my Dad start Keytruda/Pembro as his first-line treatment (now that his whole brain radiation is complete).  It did take a week of pushing but his insurance, Regence Medicare Advantage, did approve him to go directly to pembro without going on ipi first.  Hurray!  Wanted to share that news with others out there!!!  Our local cancer center is actually administering pembro (their first time ever to do so) and I had the pharmacist look up pembro in the NCCN compendium in order to support our claim as well as the doctor had to advocate strongly too.  Now, we're really hoping that this drug works...  Saying lots of prayers!!!

Also, we did ask Dr. Thompson about the ipi/nivo combo and SCCA's track record with it (for background, SCCA is Seattle Cancer Care Alliance which includes the UW and Hutch).  He said that when they initially heard about it, they were very excited and switched a number of patients to that protocol.  Many got very, very sick, however, and so they have actually pulled back on using that as a default treatment option for Stage 4.  He said that it overtaxed the entire staff of the melanoma clinic and that they are only starting to dip their toes back into prescribing it for select patients (and especially when other treatments haven't worked).  Found that interesting and thought it was worth sharing. 

All the best to everyone out there fighting this disease!  I am so appreciative for the advice and genuine support on this message board!!!

Carrie

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Anonymous's picture
Anonymous
Replies 14
Last reply 7/20/2015 - 9:07am

Just leaving from moffitt. Things are really not going my way. So since i had a extra nodal extension in the path report from node dissection and have not had radiation they are not letting me in the trial. It would take 4 weeks for radiation treatment and another 4 weeks after treatment to get in. Two other people are in line for the spot and they obviously cant hold it for me. In another kick in the ass the checkmate 238 trial will exclude me also because radiation is the standard of care for a path report like mine and that trial does not allow any radiation. Not once have i had a doctor tell me this was going to be a factor. My home doctor actually told me he wouldn't do radiation unless we didn't have a choice. It doesn't work very well and will most certainly give me lymphedema. Dr abdul said well the drugs will be available if you progress to stage 4...then i just about lost it in the exam room. Why the hell did she think i was there. I told her the whole point of me coming across the country was to find a treatment that may stop this before i progress. I feel like i got kicked in the chest. Also threw 800.00 out the window also. But who cares about that just icing on the cake...Totally crushed right now and not sure what my next move is.

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zhanggar's picture
Replies 16
Last reply 7/20/2015 - 3:24pm

I just got a shave biopsy for a suspicious mole a few days ago and I am waiting to hear the results. I just spotted the mole less than a week ago It was a flat black mole on my thigh and the diamater was just smaller than a pencil eraser. I have not experienced any symptoms such as bleeding, itching, etc. and don't have the risk factors for melanoma.  The doctor said it probably was not melanoma in the later stages because of the flatness and he did not see any part of the mole was remaining after but cannot be sure. 

My question is if the melanoma already invaded deeper in the skin, shouldn't there be a dark spot on the wound or does it not matter? 

Here is a picture of the wound a day after

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Beezer's picture
Replies 5
Last reply 7/17/2015 - 5:21am
Replies by: Beezer, arthurjedi007

My poor sister is not doing so well right now, she was hospitalised a few days ago as she lost the use of her legs and arms, she had three doses of ipi and has just had one infusion of keytruda. She also had whole brain radiation done in February but we thought she had recovered from the mobility issues with the WBR but she seems to have relapsed again, we are so distraught right now, we not sure it's the keytruda which was started three weeks ago or is it after last ipi infusion or whether our poor warrior is losing her battle. She is due to have a second infusion of keytruda next week so we are worried they will not give it to her, please can anyone share any insights at all 

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TraceyN's picture
Replies 10
Last reply 7/19/2015 - 10:26pm

I am really concerned I am having so many issues right now, and I can't seem to get anyone to take me seriously??!!!!!!  I'm getting really frustrated.  I was referred to Nashville Skin & Cancer here in clarksville, and my doctor did'nt even do a proper skin check!!!!!  Did'nt look in my hair, my feet, privates, etc..., now I have sores all over my head that are scabbing and bleeding, I had a mole on my chest pop up and turn black, and started scabbing, and itching, and today came off.  I immediately put it in a ziploc bag, and ran to the skin and cancer center, and was told it's probably nothing to worry about, and threw my tissue in the trash???!!!!!!!!!!  Is anyone else having problems like this??!!!!  I tried calling Dr. Kelly at Vanderbilt, but he's gone now along with his nurse.  I am so worried because it was so scary when I was diagnosed in 2000, I had 4 surgeries in 5 months, and my right groin lymphnodes were removed, as 3 tested positive.  I was put on the cancervax clinical trial for 5 yrs, and it was closed proven not to be successful..  Uggghhh, I'm worn out, because I know how quickly this can get away from you if not being aggressive.  Any advice or suggestions I would greatly appreciate.  Thank You.

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Joe.Pro's picture
Replies 6
Last reply 7/16/2015 - 10:56pm

I officially begin the ipi/nivo combo next week at Mass General in Boston.  I'm ready to wake up my immune system and evict these cells outa my body!

Anyone else here having success with this combo treatment?  

Joe

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Eileensulliv's picture
Replies 8
Last reply 7/20/2015 - 5:05am

Things have been going pretty well for me on the ipi/nivo combo trial. I only got one dose of ipi because I didn't tolerate the combo much. So I have been on just nivo for a few months, and get my next scan August 6th.

My biggest side effect has been diarrhea. It has become the "new normal" for me, but has been manageable. I also have some fatigue, aches and pains, peeling hands and feet, and my hair has thinned quite a bit.  Lately I am feeling increasingly forgetful. Maybe it's just stress, but I wonder if it can be attributed in part to the nivo. It has become astonishing just how much I am forgetting lately. I've been forgetting appointments, tasks I was working on, even words! I will be talking with someone and trying to get a simple everyday word out. I can think of it and picture it, but I just can't remember the word. I swear it feels like I'm losing my mind!  Has anybody else experienced this?

I'm sure this is stress related and I'm just overreacting.  I will talk with my doctor about this, but I just thought I'd ask if anyone has experienced this while I remember to ask. :-)

 

 

Eileen 

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Came across this article about the scum-of-the-earth that prey on cancer patients: http://news.cancerconnect.com/cancer-treatment-quackery-fuels-concern-am...

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jamieth29's picture
Replies 6
Last reply 7/18/2015 - 12:03am

After looking for a trial for 3c resected for a month and a half I have some decisions to make. Last week I was contacted by moffitts trial nurse and was told that the last patient to be taken on their stage 3c/4-ipi/nivo ned trial failed screening...and I'm sorry for that person if your out there. They told me if I wanted the last slot and if I meet screening requirements I could get in. I'm actually writing this sitting on the plane to Florida from WI.

Last Tuesday I had a meeting with DR Jason Luke at u of Chicago about the checkmate 238 trial. Dr Luke made some valid points and made me realize he was the first "melanoma specialist" I have talked to after seeing 3 other doctor's. His opinion was the moffitt trial would be to toxic and there is no evidence that the combo would work in a 3c situation. There is evidence of ipi working alone in another trial that has shown a 25% increase in preventing relapse. Although the data only goes out to 2.74 years. There is info on nivo in small patient numbers that shows benefit. He thinks the less cancer the drugs have to go after the more toxic the drugs may be...but no one is sure of this.

My goal is to talk to moffitt which will be DR Abdul because DR Weber is gone 2 weeks and I couldn't talk to him until beginning of August... Figure out what I think is best. The trial at moffitt definitely would be tough as it is 2.5 years of flying to Florida every two weeks and the only way I could financially do it would be to go alone. I have no clue if this is possible. I would be getting treatment then have to drive myself back to airport and fly home. If the side effects are bad not sure this is going to happen. I would have to work as much as possible to afford this trial. The 238 trial is a good trial but I think moffitt may have better odds of working. The Chicago trial is one year of 2 weeks on 1 week off. I know of course nothing could work also. I am looking for anybody that has taken the combo in adjuvant setting that can give any advice. I have had 8 nodes involved already that were local and have up to 90% chance of relapse. The 238 trial is either ipi at 10mg/kg or nivo at 3mg/kg. The moffitt trial would be the combo for 4 doses every three weeks at 3mg nivo/1mg ipi then just nivo for 2 years every 2 weeks and not sure on that dosing. Anyone's thoughts and opinions are welcome. Thanks!

Jamie

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Mrs.GL's picture
Replies 6
Last reply 7/16/2015 - 12:17pm
Replies by: Mrs.GL, Anonymous, Kim K, jessica_f, Janner

Hello - I am revisiting this site as I am going through a bit of a scare recently and was hoping to get some advise/thoughts, I appreciate the information you all have provided others.

I had a chest x-ray that came back with a small lung nodule. (My original MM diagnosis was 1mm clark level IV, neg SNLB). I insisted on a CT scan, that came back with a 4mm (not from original 3mm) and a 8mm some degree of airspace density may be inflammatory.

I have one PCP that says I have no reason to follow up on this and another that says if it were her she would see a pulomonary Dr just to be sure. Sometimes I feel I am overreacting -  I'm very confused. I have a referral to see a Pulmonary Dr. in Vegas.

Thoughts / advise please?

 

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