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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Aloha14's picture
Replies 2
Last reply 1/18/2017 - 1:16pm
Replies by: debwray, Michelle820

The large seroma is causing a huge knot of muscles which is getting larger, below the large seroma on my inner leg. It's impossible to get that knot out because of so much pressure from the seroma. The two smaller ones weren't drained but at least they don't hurt.

So, the surgeon told me that the seroma would probably have to be drained more than once so I called this morning for an app't some time this week. But due to the holiday yesterday which is the surgeon's clinic (Monday) day to see patients, clinic has been canceled this week and there's no app'ts. Ugh. Not even to see a resident or another doctor. This is nuts. So going in next week. 

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Hello, all. I do not have melanoma at all, at least that I'm aware of, and am hoping it stays that way.

Some background: I'm a 28-year-old male with a family history of melanoma (my aunt was 28 when she first developed the disease). Recently I noticed that a mole on my back, which I've had for many years, has grown larger.

It is normal diameter and seems mostly symmetrical, but is elevated from the skin, squishy, and has a cratered top that is tender to the touch.

Taking a shower, for instance, is painful when the water hits my back. It seems to be mostly pinkish, though the very top is slightly darker, closer to brown. It appears a little dried out. There is no hair growing from it.

I've already made an appointment with the dermatologist, but can't be seen for two weeks. Do I have cause for worry?

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/17/2017 - 6:42pm
Replies by: Nemesis, Everymoment, 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 8
Last reply 1/17/2017 - 8:03pm

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. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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_Paul_'s picture
Replies 16
Last reply 1/17/2017 - 10:22pm

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.

To exist is beyond fantastic.

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Aloha14's picture
Replies 6
Last reply 1/18/2017 - 5:27pm

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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Anonymous's picture
Anonymous
Replies 2
Last reply 1/22/2017 - 2:06pm
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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jenny22's picture
Replies 5
Last reply 1/20/2017 - 10:04pm

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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iskitwo's picture
Replies 15
Last reply 1/23/2017 - 12:07am

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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SOLE's picture
Replies 3
Last reply 1/18/2017 - 5:27pm
Replies by: debwray, SOLE

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

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NancyGM's picture
Replies 14
Last reply 1/18/2017 - 11:46pm

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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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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