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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JoshF's picture
Replies 23
Last reply 1/19/2017 - 12:15pm

So I ended up with full scan on Thursday. Obviously our biggest concern was liver. Unfortunately we never received disk from MDA for comparison. Bottom line from oncologist looking at scan, there's about 50% healthy tissue remaining throughout liver. I saw images and it was disheartening. Just nodules spread throughout liver. On the other hand, some things got a bit smaller and some things bigger based on written report from 12/15 scan. LDH shot up to 2700 and 2 of the 3 LFT's were a bit higher. Not sure what to expect after 1 treatment. Anyway, she decided to move forward with 2nd treatment of Abraxene & Keytruda. I've been with my oncologist for close to 6 years, I know she's concerned. We decided to schedule a brain MRI for Monday. I'm scheduled to begin TIL Jan 31 and supposed to go MDA for screening next week. Now I'm a month out from gamma knife, I need stable brain MRI otherwise a PI override. I'm not wasting more money to travel if MDA won't do that. So I reached out to them to let them know that. The clinical trial "system" is crap. I feel like when I was healthy cancer patient then I'm a hot commodity but get sick and lose that "Olympic patient" status then forget it...not to mention all exclusions for pretreated patients. No wonder only about 5% of patients are selected for trials. Yeah I'm frustrated by all this BS. I feel decent the last couple of days but who knows how I will feel on Jan 31 when TIL would start IF I get in. Need this Abraxene and/or Keytruda to stop progression. Quite honestly, I'm sick of all of this. It's wearing hard on me and my family.

Josh

Let's work for better treatments....for a cure!!!!

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_Paul_'s picture
Replies 18
Last reply 1/16/2017 - 1:43pm

Hey everybody,

Just checking in. My daughter and I and are en-route to LA and should be there tomorrow.  My appointment is for Monday at noon. My daughter is happy about driving the Tesla.

I finaĺy got the relief bracelet that Linny suggested and while it is not 100%, I can feel it working when I use it. I am nauseous every day and the amount of spewing has been greatly reduced by the bracelet. Thanks for the great tip Linny.

I am just making it by with 37.5mcg of fentanyl and 12mg of dilaudid every 4 hours. There is a hard limit at 72mg/day of dilaudid but it's OK if I bank it when I am able to go longer than 4 hours. Right now I have 40 minutes banked which means if I wake up in pain I can take a dose up to 40 minutes early. 

There was no time to obtain all my medical records in advance and in electronic format, so I am showing up with a big Tupper ware tub with all my records for the last 4 years,  discs and all.

Hopefully we will run into Jen and her dad there on Monday.

So far it's been a pretty good road trip.

- Paul

To exist is beyond fantastic.

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mimisadie's picture
Replies 8
Last reply 1/17/2017 - 6:52pm

I just celebrated my 2 year remission from melanoma in October. I noticed a mole on my leg last month that I knew in my heart was melanoma and I was right. My doctor just called me today on a Saturday to tell me Stage 1 Level 3. Will be having surgery within 2 weeks. 

Getting my thoughts together and going to relax and do all I need to do but I am not going to play the victim. I will overcome.

Wasn't in a suport group before but felt I wanted to start doing this now. 

I am going to think of "living fully with cancer"......just wanted to post for the first time. 

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keepthefaith11's picture
Replies 12
Last reply 1/16/2017 - 4:47pm

I am extremely frustrated with my dad's condition. The status of the brain Mets are pretty much stable, a couple of them a bit bigger and some smaller. So there is not much going on as far as disease progression. No additional disease anywhere else in the body.

He had his third seizure in the beginning of November and has never really recovered. Before this last seizure he was doing pretty well. Able to walk around fairly normally. Going to the mall etc. He had his fifth immunotherapy infusion about three weeks after the last seizure. He developed some diarrhea and then was hit with the flu. He was in the hospital for almost 3 weeks primarily laying in bed. He has never recovered from that whole ordeal. He is now at a rehab center.

The fatigue is Extreme and he sleeps off and on all through the day laying in bed. They have to use a lift to put him in the wheelchair to get him out to eat his meals. But even then he is only alert for maybe an hour and then ready to go to sleep again. He is experiencing some pretty severe swelling in both legs as well as his right arm. His speech has not been great since the last seizure either.

I just got back from a two week visit with him and I am so frustrated and confused. Does someone have any ideas or what is going on here? The doctors don't seem to know why he is so tired. They tend to think it's because of the last seizure and don't think it has anything to do with a brain tumors since they are still very small. He is on braf/mek combo since a couple of weeks back and also to different anti-seizure medications and one heart medication. I just don't think that the medications would make him this out of it. This is absolutely horrible. He has no quality of life whatsoever.

I also think there are some brain damage there. Either from the seizures or possibly the tumors affecting things. He definitely understands when you talk to him but seems to have a problem with short term memory. Can anybody please throw out some ideas of what you think might be happening?

Thank you,

Annie

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Anonymous's picture
Replies 2
Last reply 1/14/2017 - 2:21pm
Replies by: Anonymous, debwray

Hello - I have read that targeted therapies can cause more tumors to appear ina short period of time. Does anyone have any personal experience with this?

thank you in advance.

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Michelle820's picture
Replies 3
Last reply 1/13/2017 - 8:29pm

Hello, I was wondering if anyone has any info on acral melanoma. I have had these medium brown colored bands/streaks on both of my thumbs from for a least a few years if not more. I had googled them in the past and it's extremely difficult to find info on possible benign nail conditions that could mimic acral melanoma. Of course since I had my recent WLE (which was an insitu thankfully) I am scared at every little "suspicious" mole etc.  I was always scared or forgot to show the Derm my nails-and I have had this prior to my recent excision. I do have a check up next Tuesday.  

Im just curious if these streaks are "common". I am light skinned with brown hair and have tons of freckles and moles. Wish I could post a picture! Any info would be greatly appreciated. Thank you :)

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CindyCo's picture
Replies 8
Last reply 1/16/2017 - 1:00am

Hi Everyone,

Has anyone participated in or have any thoughts on the tumor testing trials for targeted therapy? There are a couple that I was looking into for my mom, but I haven't heard of many patients on the board going this route.  Would love to learn more about it so that I can schedule a consultation for one or the other.

NCI-MATCH:

https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1

I-PREDICT:

https://clinicaltrials.gov/ct2/show/NCT02534675

 

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fortiz's picture
Replies 5
Last reply 1/14/2017 - 6:57pm

Yesterday my wife received the results from the last TAC. Good news. She's been NED for 3 years and a half on BRAF+MEK clinical trial. She continues full dosage and doing well.

Thank God.

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Hriggenbach's picture
Replies 5
Last reply 1/16/2017 - 7:28am

Has anyone had this  procedure? I'm wondering what the recovery time is, if they have to move the nerves, and if is lessons the chances for lymphoedema?

I'm 3b now with 1 of 2 positive lymph nodes if more lymph nodes test positive does that change anything as far as treatment? I'm choosing to treat this aggressively because after WLE they found 2 tumors 2.3 and 4.5 one ulcerated with additional satellites . I've only met with the surgeon so far after the surgery I will meet with the medical oncologist to discuss medications so at this point I don't know my options.

Holly

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MaPerny's picture
Replies 12
Last reply 1/15/2017 - 12:36pm

Yesterday my husband, Juan, had 4 hours of MRI's under sedation due to current back pain levels.  They did spine, pelvis and brain.  Today CT to check abdomen/chest.  

Got results back from MRI's and devastated to learn from spine Drs/radiologist here at MDA that he has LMD plus brain mets for the first time.  

Not sure about rest of results yet.

This has been such a fight since stage 4 diagnosed in Oct 2014, high dose IL-2. Ipi, Opdivo, Il-10, Keytruda, CVD chemo, ipi/Nivo combo, surgeries, radiation and TIL.  And now leptomeningeal disease.  I have always had hope and tried to keep us all upbeat but this news feels like a punch in the stomach.

Waiting to hear next steps.  Any advice from anyone about LMD treatments and what we should expect would be much appreciated.

Maria

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snow white's picture
Replies 19
Last reply 1/14/2017 - 5:43pm

Hi everyone, I think its important to share any bit of good news on here to keep spirts up.

I spoke to Dads doc yesterday and they got Dad CT scan back (full body).  There were no new tumors and it looks like the ones in his spleen are dwindleing.  The Pet scan showed lots of tumors in the spleen, but the ct scan before starting Opdivo showed about 12 tumors.  Well the current CT showed only 5!!!  So it looks like Dad is responding to the drugs.  Dads blood work is a little concerning, his platelets are down to 77, so they couldn't do his treatment on Tuesday.  He will retest agian next week and hopefully the number will be up enough for him to get his infusion. I believe he is getting his spinal puncture done next week as well.  We are still headed to see Dr. Hamid on monday, so will update after that.

one day at a time........

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Anonymous's picture
Replies 2
Last reply 1/12/2017 - 9:24pm
Replies by: Anonymous, BillMFl

I have posted a few topics on here bc the last three weeks have been a roller coaster for me. I had two doctors tell me when looking at a mole on the back of my neck that it was highly likely to be melanoma. They did a punch biopsy and I waited a week for the results. Somehow the results came back as sever atypia and we schedule an excision and decided to be aggressive and take wide margins just to be safe. 

When I went in to my post op appointment, I was told that the results of my pathology report were what the originally thought - malignant melanoma in situ. Margins were clean and now I'm scheduled for a full body check in two weeks and will get one every three months.

I'm young and a mother to two babies - one 18 months and one 11 weeks. Reading about melanoma and pregnancy has me scared out of my mind that something else could be lurking. I'm just so thrown as to how I had such relief from the punch biopsy only to be thrown again hearing it was melanoma. Is this a result of a poor pathologist reading? 

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Jubes's picture
Replies 19
Last reply 1/15/2017 - 11:21pm

Hi all

i have just had a PET three months after my lung surgery and it is CLEAR. 

Thanks to you all, as I never make a decision on my treatment without referring to this forum

just have to deal with my spondyloarthritic side effects from keytruda now but even that doesn't worry me now

anbe-Louise 

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Buddy0513's picture
Replies 19
Last reply 1/15/2017 - 12:38am

Hello everyone,

Just a question to anyone that is on this part of the treatment. My mom made it through her 4 infusions of Ipi/nivo, about a month ago now she started the maintenance period of just nivo. Ever since she started this, she has been extremely fatigued almost to the point where she can't function. She had some fatigue and sickness while on Ipi/nivo, but since the nivo it has been twice as much. All of her major bloodwork (such as thyroid and liver enzymes) have been coming back fine. She stopped her prednisone and is currently on lasix to help reduce the massive amount of swelling she has from prednisone (she gained well over 10 lbs at this point, was on it for over 2+ months).

I was just curious if anyone else had this same experience with the fatigue? And if they did, what did you do to help offset/control it? Any insight about this is helpful. Her oncologist said that this is normal regarding the Nivo, I just haven't really heard about it before so I am getting nervous. 

 

P.S. He also called for her first CT scan of her abdomen (where the tumor originally was) next week. I am assuming those results will be in ASAP since they want it before her next Nivo treatment (not really sure why)...Needless to say I have been sick to my stomach all day about this!! I will keep everyone updated...

Melissa

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