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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Raco's picture
Replies 1
Last reply 11/16/2018 - 8:57pm
Replies by: TexMelanomex

Hi all:

Just wanted to say that I just finished my 17th out of 26 Opdivo treatment for stage 3 Melanoma. 

I am now on a count down in single digits.   I should be finished March 21, 2019.

I have experienced a hand full of symptoms and some have even come and gone. what has stayed the whole time is Fatigue, itching and bone and muscle ache/pain.   

Most of the things I take to counteract these symptions have been little to not help so I just keep trudging on.  No Worries.    I just hope things will turn normal once treatment is over.

As always I really enjoy all the post and feedback, lets me know that we are not alone.

Have a great day

Robbie (RACO)

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BrianP's picture
Replies 1
Last reply 11/16/2018 - 10:24am
Replies by: Raco

Pretty good overall summary.  I thought the information on Stage III adjuvant treatment was very interesting.

 

https://www.targetedonc.com/news/sitc-recommendations-provide-guidance-f...

 

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TexMelanomex's picture
Replies 6
Last reply 11/16/2018 - 9:59pm

Hello Warriors!

I just got back from a trip to Yosemite (bucket list item) and it reminded me of just how important it is to live life. Whether you are just getting started on this journey and have some heavy lifting ahead, or you've be in the fight for years, or if you have clobbered this bastard and are enjoying the NED lifestyle...get out there and live! I'm not saying you need to head out to a national park (but you could), living life might mean getting off the couch and going for a walk, going to that restuarant you love, seeing some friends or family you haven't seen for awhile. Living life is part of the fight and when you are living...you are winning! I think its easy to get so wrapped up in our disease that we stop doing things for us...its easy to do even if you are NED. In fact, I would say that there have been periods where I forget all about Melanoma and find myselff slipping back into the old grind...this is the wrong answer! If this teaches us anything it should teach us the lesson that life is finite and we need to live, NOW. Again, I'm not suggesting you empty your bank account on a Las Vegas bender...I'm just saying remember to do things that make you happy, don't be afraid to live, and when you reach NED status remember where you were in the fight and the things you told yourself (I'm going to exercise, eat better, be more social, see people I care about, etc etc. once I get better). I would also say DO NOT wait until you reach NED, live now!

Tex

Tex

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kannevans's picture
Replies 3
Last reply 11/17/2018 - 6:12am
Replies by: kannevans, MelMel

Hello all, 

I am new to this forum and this is my first post. I have been reading all your posts and this place has been my sanity since finding out I had Melanoma in August. It seems like it has been an eternity but really hasn’t been long. Went through all the biopsy’s , scams, surgery and now I completed my first infusion of Nivo on Monday. I feel like I am nauseous and almost like the flu but it comes and goes. Today was the worst but yesterday I felt normal , Is this normal and should be expected? 

 

Kris

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BrianP's picture
Replies 5
Last reply 11/15/2018 - 8:29pm

Just wanted to post this because I thought it sounded really cool.  MRF put it out on their FB page.

 

https://blog.dana-farber.org/insight/2018/11/vaccine-implants-aim-train-...

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Jubes's picture
Replies 2
Last reply 11/15/2018 - 7:49pm
Replies by: Bubbles, BrianP

Hi all

i have not posted for a while as things have been moving slowly. I have been Ned since my lung operation in nov 2016 but struggling with inflammation through my entire body. I have been able to keep going with ultra sound guided steroid injections especially to my knee and draining the fluid out. Two months ago we decided it was time to go the big guns and I started on humira which I inject every two weeks. It has worked amazingly and after three injections I am walking without a limp and is fine except my shoulder, which I am continuing to treat with the steroid injections. I am a musician and I have had to be off work for a while not able to lift my right arm ( not good for a viola player) but my dear colleagues have offered to do half of my work for me on our upcoming Europe tour so I can just play the second half of every program.  I just had done more injections and I’m managing fine...even Mahler 5 (an 80 minute marathon piece). I just wanted to warn everyone that when you have these steroid injections your cortisol levels drop. My rheumatologist scared me yesterday as he said I was in danger of dying as the levels were 50 and I couldn’t travel with that level. I called the endocrinologist in a panic and then when we went over everything we realised it’s because I’ve had so many injections and it stops your own cortisol from producing when you have all that fake cortisol in your system. Bad from the Rheumatologist as he’s the one ordering the steroid injections!! Also I have not been fatigued or had any other low cortisol symptoms. Sorry for long post. In a nutshell:

humira is working for inflammation side effects

steroid injections affect your cortisol levels

next step is scans in January to see if the humira has affected my Ned status

all my best wishes to you all

 

anne-Louise 

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BillB's picture
Replies 3
Last reply 11/15/2018 - 9:37pm

Hi everyone, haven’t posted lately but read the forum and Celeste’s blog every day always giving my prayers to everyone battling on. Completed treatment and scans yesterday and waited nervously today to get results. Amplified when they called to see if I could come in earlier. Do you think an already nervous person could read anything into that!

Results are still good! Thirteen month NED anniversary.  As I’ve discussed before the doctors at MSK believe I can stop treatment but my oncologist is not pushing me. She did bring it up again today. Fortunately I haven’t had much in the way of side effects(knowing that can change quickly) and all of my lab #’s are consistently good. I have started to push treatments out from three weeks to every four to five. Considering going to every six weeks before evaluating stopping altogether. I truly trust the doctors that I could stop but mentally I still can’t pull the switch.

MelMike, get your butt in and get the beast removed. You have everyone’s support and we all know you can get it done. So, Just Do It!.  Good  luck to everyone and I hope everyone has a wonderful holiday next week with their family and friends. Celeste, always thinking about you and wishing you the best in the new battle along with everyone else.

Bill

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Bradley75's picture
Replies 2
Last reply 11/15/2018 - 9:39pm
Replies by: TexMelanomex, SABKLYN

Hi all,

The first scan after my onc and I talked about a finish line was 7 weeks ago.  As usual, I had a couple lymph nodes light up so we re-scanned last week.  One was gone and the other had grown.  Still really low FDG uptake so I wasn't too concerned.  I have had reactive lymph nodes three other times and the needle biopsies all came back negative.

This time I am not so fortunate.  I have a 2 cm nodule by my left clavicle.  The first time mel decided to visit the left side of my body.  I start TVEC soon along with the pembro I have been on for 27 doses so far.  I am very optimistic about this based on the results from TVEC I have seen on this forum and from other mel people I have met over the years. 

I sure enjoyed the hell out of NED while I had it.  It has been almost a year since I have had active cancer in my body.  I am keeping NED's room the way it was left because i want to be ready when he comes back to town.

WE FIGHT ON! 

Brad

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AMcReader's picture
Replies 8
Last reply 11/15/2018 - 3:40pm

Hi Friends,

After relatively good success on Nivo the past few months, the tumors in my lungs are growing. Originally, my oncologist had thought surgery might be a good option since Nivo was keeping the rest of my body and brain in check but I met with the thoracic surgeon today and he doesn’t want to do surgery since the tumors are growing and lighting up. I am bummed because I was looking forward to being disease free but trying to stay positive. Does anyone have any personal stories about failing Nivo and then having success on the Ipi/Nivo combo? I could really use some good news right now...

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Sissi's picture
Replies 4
Last reply 11/15/2018 - 6:41am

Hello everyone,

I have never created a topic here, but I have been so uplifted by everything I read here in the past year that I have to.

Quick story: I was stage 1 in 2007, until a groin lymph node popped at the beginning of the year.

After months and months of scans, scares, one lymph node surgery, I was finally staged yesterday. I am «only» a stage 3, and I am NED. There was that only one (big) lymph node with cancer.

Kelly, we could have cried together last night, because that's all I did too. I cried over the good news, but also the unfairness of it all. How did I get the best pathology report I could hope for?

Reading all the posts here kept me sane through it all. I am not commenting often, but you are all in my thoughts. There is hope, always.

Merci,

Marie

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KellyH's picture
Replies 10
Last reply 11/15/2018 - 10:58pm

Hi everyone!!!! 

My son’s first set of follow up scans since diagnosis and surgery were Monday morning. I was a hot mess for days before and Monday forget it...i could barely think straight. So It has taken me a couple days to really process the news...but 9 months from diagnosis, 6 months into his Nivo treatments, and my son is officially NED!!!!! 

Relieved is not a big enough word to truly explain the feeling I had when I got the call. I cried for hours and hours. I still am tears eyed writing this post. 

Nivo treatments are another 6 months and then years and years of scans to follow up..I hope!!!!! Melanoma is such a sneaky little monster that I know to never let my guard down, not even for a minute but this was a great first step!!!!! 

Thank you to everyone for all the suppport...I spent a few weeks just looking though this forum before I actually started posted and interacting. I’m so glad I did. Your experiences, your humor, kind words, and words of encouragement gave me hope and strength on some of my hardest days.

As the holidays approach I hope we can all find a little peace and happiness surrounded by our family and friends because one thing this experience has taught me is to appreciate the little things....and never take anything for granted.  

Kelly (AJs mom). :) 

A Melanoma mom ❤️

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MelanomaMike's picture
Replies 3
Last reply 11/14/2018 - 7:32pm

Im playing the hell out of the Lottery cuz i have plans to build that Melanoma Retirement Resort/Medical Facility right in the middle of America! (Dont worry Melanoma Outsiders, youll be flown in zero cost from yer respected countries!..i wanna see yer faces, not your "words"...and i digress...lol
Thank you all for your words of kindness & relief... Ill bounce back & i did already "today" matter a fact by doing Nivo #7, it kinda put me back on track..thanx again yall...

Im Melanoma and my host is Mike..

www.covvha.net

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jbronicki's picture
Replies 9
Last reply 11/16/2018 - 9:37am

Hi everyone,

I know I crave these type of updates for hope, so will try to pay it forward.  We had scans and appointment at MD Anderson yesterday and today. Scans were clear.  It's hard for me to believe.  8 hours ago, you couldn't have convinced me that we would hear good news. I've got just enough research knowledge to be dangerous and when my husband was first diagnosed in early 2014 and handed me the pathology, he had EVERY bad prognostic indicator:  22 mm once it was removed  (even though they  don't know if it was primary or metastasizd tumor).  Dr. Amaria said she thought it was Stage 4 and thought it was metastasized, high mitotic rate, clark level V, etc etc.).   It could be any stage, it no longer matters to us since.

MelanomaMike I was thinking of you today.  In my 20s I was diagnosed with pretty severe panic disorder, so I feel like I'm LITERALLY  not built for this type of stress. And my husband chose wait and watch which for people with anxiety is basically undoable for us with anxiety.   If you would have seen me today before the results, you would have witnessed a pretty severe panic attack.  Sobbing in the car, sobbing in the shower, crying in the waiting room and I'm not the one with cancer.  The thought of losing  my husband and my daughter losing her father is pretty overwhelming.  This stuff is anxiety producing by definition.  I ended up leaving to pick up my daughter before we met with Dr. Amariaand my husband calmly got the good news and was relieved I was gone :)  And this is all from someone who works with statisticians on a daily basis that talk about survival models, cox regression, yada yada .  That all flies out the window with scanxiety.

I can only say one thing for certain that I've learned through all of this, we need community during these times.  I like to say and think that I can handle it, but I can't, hearing from this group and people in it has been the single most important thing to me, thank you Amie Taylor!, and sometimes has been the only thing that has helped.  The other thing I learned is that if it progresses, we have a better shot at this than before, that's a big deal. I repeated that mantra today.  And finally, I just don't shine in this area of getting results and that's ok.  My talents lie more with after the results are in, let's get a plan of action. 

Everytime I'm at the MD Anderson Melanoma and Skin Center, I look around and see if any of you are there.  then i think about Josh, Artie, Adriana, etc and think they were sitting right here too a in the past several years and I miss them and I try to be strong for them.

Thank you everyone and special thanks to Amie.  I'm literally at my best communicating with you all.

Many thanks

Jackie

 

Jackie <3

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nicolec's picture
Replies 1
Last reply 11/14/2018 - 8:33am
Replies by: Anonymous

Do PET scans always show melanoma in lymph nodes? Had my quarterly ultrasound of lymph nodes yesterday- and some came back as large/lobulated. Haven't heard from my oncologist yet. But- last time this happened (3 months ago) he ordered a PET scan. The ultrasound yesterday was much more in depth than the first one and found more nodes. The report indicates they have changed. (Last ultrasound found 3 nodes; this one found 18).

Just wondering what's best- PET scan, ultrasound guided biopsy of lymph node or FNA(maybe that's the samw thing)? Background: Stage 3a. Had melanoma in 2 lymph nodes, one on each side of groin. Did not have CLND (obviously) but have ultrasound every 3 months.

 

Nicole C
3a

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Diane F's picture
Replies 4
Last reply 11/15/2018 - 3:57pm

Caregiver here-to my significant other diagnosed 6 mos. ago with leptomeningeal melanoma, brain, spine and adrenal gland mets.  craniotomy, whole brain and targeted radiation, and now 4 rounds of Ipi/Nivo under our belt.  moving on to Nivo alone in a few weeks.  This is a hard road-my hat's off to you all.  Scans this week and next to determine effects of all treatments.  I'm a nervous wreck at what they'll find.  so hard to see your Beloved healthy and active one day and diagnosed 2 days later.  Simply Surreal.  So little is known about prognosis for LM, even with amazing drugs we're on.  Not really asking a question, just reaching out and sending all of you my hope and supportive positive thoughts.  

all my best--Diane

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