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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Anonymous's picture
Anonymous
Replies 4
Last reply 1/17/2017 - 1:53pm
Replies by: Anonymous, jbronicki, Nick C

I had my surgery on Friday the 13th.  All went well, but I'm so sore.  It was below my left shoulder blade and the lymph nodes were removed from under my left arm - that hurts the most. The next 2 weeks are going to be difficult while I await my results.  I would appreciate prayers that it has not spread to my lymp nodes.  Thank you!!

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snow white's picture
Replies 4
Last reply 1/17/2017 - 1:45pm

Well. It was a very interesting day to say the least.  I was so nervous for a few days before the visit. We had had all of Dads medical records sent over and we brought CD's of all of his scans.  We ended up mainly seeing Dr. Morganna Freeman who works as a partner to Dr. Hamid.  We LOVED her.  We were at the appointment for 2 1/2 hours.  She is very thorough with her questions.  First of all, she feels that Dad is responding. well to Opdivo.  Unfortuantely, Dads platelets are very low and he hasn't had a treatment since Dec. 27th.  Interesting part of this whole visit is that she is suspicious that Dad might have some type of fungal infection that often mimics tumors (I don't really understand it).  She looked at all of Dads pathology and found that the Left Lung lower lobe that was removed showed that it tested positve for fungal elements. This is something that we have never heard before.  She was also fairly sceptical about Dad having LMD, though it is a possibilty for sure, it could also be something else.  She said that they will do the Spinal tap for the LMD and also check for this particular Fungus.  The plan is to try to get his platelets up, most likely by giving him a good dose of steroids, if that doesnt' do it, then a product called N Plate will be used.  We can't have the Spinal Tap until his platelets are over 100,000.  They took about 10 vials of blood and we should have some results back by tomorrow.  On top of all of this.  We were in the ER with Dad saturday night because his temp shot up to 101.7.  He had been fighting what we thought was a cold.  It turned out to be the Flu.  They started him on Tamiflu and he is already feeling better.

There was much more talked about, but honestly my head is spinning.  We also did see Dr. Hamid and he had already been "briefed" about Dad and concurred with everything Dr. Freeman had said.  Dad goes back next Monday and we will go from there!  We are so happy that we decided to go there.  Everyone was great, it felt like the right place to be!   Also, I was SO happy to meet Paul and his daughter.  What a great guy that has been through so much.  I know it was helpful to my Mom to speak to him and hear him say that he felt it "was the place to be".  Thanks Paul!!!    Hope all are hanging in there.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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_Paul_'s picture
Replies 13
Last reply 1/17/2017 - 1:41pm

What I visit I had today. I spent the afternoon at the Angeles Clinic in Santa Monica. It's a small place, but all they do is melanoma I think. I got the impression that people were flying in there from all over the country. I had a nice conversation with a man from Hawai'i and a woman who had flown in from somewhere else who was the caregivery of yet someone else. Busy, busy place.

I am quite a sight at this point, with maybe 50 sub-q's on my noggin, and some bigger, painful ones on the back of my neck, sides, armpits, etc. He found them all very quickly. Ouch! As he took my history he kept shaking his head at all the negative responses as I answered his questions. I asked him if he was busy with people like me flying in from all over, and he expressed frustration that he kept having to clean up other oncologist's messages.

At one point he actually said  "we need to get you f*cking started!", and "I want to treat this aggresively". This was all music to my ears.

He wants to start me with a trial NCT00412828, but first needs to address this brain met. Once my brain is stable we can proceed.  I have a brain MRI on Wednesday and go back for a follow up on Thursday. Treatment may begin right away depending on my noggin. 

The treatment combine glembatumamab vedotin with Varlilumab. Neither of these involves the CTL4-A or PD-1 pathways which makespecially me happy. He also wants map my tumors for all the mutations,  a very popular topic on this forum. He doesn't want to do any interlesional therapy is it would delay my trial.

This feels so much better than the "wait and see attitude" that the SCCA has been giving me.

I met Jen (snow white) and her mom and we had a nice chat. It's so cool to meet people from this board in person - we have so much in common. 

Josh, there are several trials here for people with heavily pretreated tumors - right up our allies.

For the first time I feel like there is some real hope. I certainly like Dr. Hamid's attitude. I feel like this has been well worth the drive from Seattle. 

- Paul

P.S. Please forgive the typos, I am breaking in a new Android tablet.

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iskitwo's picture
Replies 12
Last reply 1/17/2017 - 11:25am

This will be my first 3 month follow up scans and my first time to do scans at MD Anderson. It would be an understatement to say that I am nervous. Praying I made the right choice with wait and watch and the scans are clear. Does this scan process ever get any easier???

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JoshF's picture
Replies 19
Last reply 1/17/2017 - 11:23am

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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Anonymous's picture
Anonymous
Replies 1
Last reply 1/17/2017 - 8:15am
Replies by: Anonymous

Has anyone tried this recently and seen success?  I saw a clinical trial recruiting from Seattle but no results?  A presentation at at ASCO by RAbio buying can't access the poster session.  Any help or direction for information would be very much appreciated.  Thank you.

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Aloha14's picture
Replies 5
Last reply 1/16/2017 - 9:45pm

It was my first one and I was prepared with my portable CD player and a book. However, the technicians wouldn't even let me listen to music during the resting time before the scan, or read a book. I was told that either one of these would make my brain work too hard.

I figurred I couldn't listen while in the machine. Someone here mentioned they could listen to music. I guess there's variations about instructions or maybe it has to do with the type of PET machine?

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NancyGM's picture
Replies 12
Last reply 1/16/2017 - 9:25pm

In a couple of a days, I will be at nine years, stage IV NED. It's wierd, but I feel a bit guilty, ( I have lost 5 dear people to cancer in the last few years). I feel like I am bragging when so many here are in the midst of struggling with the mental and physical effects of the disease.....However, I want to offer HOPE. There are long term NED survivors and long term stable disease status survivors of melanoma. Most of us just rarely check in here anymore. 

My daughters grew up, I went back to work as a preschool teacher and am working at my dream school- best job I have ever had. I met a wonderful person who accepts my uncertain health and is a suportive partner. I have SO much to be grateful for, but, I struggle with exhastion, worry over possible symptoms of reccurrence, and the fact that others see me as "cured" when I know I can't ever really use that term.

My history: I had a met to my mediastinum, biopsied in an open thoracotamy, that could not be removed because it accluded my pulmonary artery, so I did 11 rounds, over a year, of Temodar ( temozolamide) and have not done any preventative treatment. The only major change has been following a strict vegan diet. I try to deal with stress well, but, stress is always there in one form or another!

So, I wish ALL of you the very best of luck and health and peace of mind. Every one of you are BRAVE and are my HEROES. Much love, fellow warriors. 

NancyGM

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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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jenny22's picture
Replies 1
Last reply 1/16/2017 - 3:51pm
Replies by: adriana cooper

Hi Jamie-

I was just looking at your last post, from XMAS day.....(I didnt know prior to that LMD had been confirmed)

Wondering how you are....have you been back to MDA?

As always, thinking about you and hoping you are  ok. 

Let us know how you are.....

xxoo

jenny

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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

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mimisadie's picture
Replies 7
Last reply 1/16/2017 - 8:00am

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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Tamlin's picture
Replies 7
Last reply 1/16/2017 - 7:32am

Hi

i was diagnosed with subungual melanoma and had to have my toe amputated in 2006.  I have been fine since, however, I have been worried about a lump in my groin.........the thing is, this morning the lump was a bit smaller  can I assume that it won't be anything serious due to reduction in size, and should I cancel my appointment with dermatologist ?

Thanks 

 

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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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I'm curious to have your impressions on this endeavor and on the current and available test called gps cancer.

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