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.

Expand/ Collapse Topic
 
Replies By
View Topic
KellyH's picture
Replies 6
Last reply 11/14/2018 - 2:59pm

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 ❤️

Login or register to post replies.

jbronicki's picture
Replies 8
Last reply 11/14/2018 - 2:56pm

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

Login or register to post replies.

MelanomaMike's picture
Replies 2
Last reply 11/14/2018 - 2:48pm

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

Login or register to post replies.

SteveR13's picture
Replies 12
Last reply 11/14/2018 - 1:02pm

Hi All,

 

I was diagnosed stage 1b a couple of months ago. I was 1.9mm non ulcerated with a Clark 3 and Mitiotic rate of 6. I went to the dermatologist who decided to do my WLE on the spot. Before I left he suggested I see an oncologist so I made an appointment. The oncologist said the results from the WLE came back clean however based on the stage and mitiotic rate a SLNB would be necessary to determine if it has spread. I got a surgeon recommended and booked the procedure. When I was coming around from anesthesia the surgeon told me nothing lit up and he wasn’t able to get a lymph node. I only write this because after making an appointment with my oncologist to see what happens now I went home and researched online why they couldn’t get one and what that means. I found nothing. I couldn’t believe it was only me that had this issue. After seeing my oncologist it seems that sometimes when they do the WLE first it can change the flow or mapping to the lymph node and make it so the radioactive dye doesn’t get there. Hope this helps someone. Next order for me is a PET scan which Im hoping will help me determine if I’m stage 3 or clean.

Steve

"The key is not to attend your funeral until the day of your funeral"  

 Not sure you coined the phrase but it helped me.

Login or register to post replies.

Sissi's picture
Replies 3
Last reply 11/14/2018 - 12:00pm
Replies by: Jelena, jbronicki, Johnjk04

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

Login or register to post replies.

clgardner's picture
Replies 12
Last reply 11/14/2018 - 11:10am

Hi everyone,

I had my primary melanoma back in 2013 when I lived in the UK. Breslow depth of 2mm, but not ulcerated. I had wide excision surgery with clear margins & lymph node scan was clear, so we moved out to the USA, and put it all behind us.

5 years later in September 2018, I feel a lump in my groin area. Had a biopsy & turns out that a lymph node had been replaced by melanoma. I have been referred to MDAnderson, one of the top cancer clinics & been blown away with the care & treatments available there.

Just last week (5th Nov), I had an inguinal lymph node dissection. Still waiting on pathology results, but have a large wound and a drain installed.

Wondered if anyone could share their experience if you have been through something similar? After a week I’m getting lots of tingling & burning sensations in my thigh. Is this normal? I get very tired by the end of the day, but I’m hardly doing anything during the day, is this normal? I’m also wondering what the recovery time is for getting back to physical exercise. I’m a keen cyclist, and can’t wait to get back on my bike. How long before you returned back to work? I have an office based job, but requires lots of walking around between meetings and other businesses offices. 

Any sharing of your experiences appreciated. I’m not very good at being a patient & am keen to get back to normality ASAP, but at the same time don’t want to rush things & do more harm than good.

Thanks in advance

Clare 

Login or register to post replies.

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

Login or register to post replies.

MelanomaMike's picture
Replies 24
Last reply 11/14/2018 - 1:06am

Hi guys, its taking me a few hours to muster up the "courage" to write but, i folded on the surgery, i panicked, anxiety kicked in and i froze..I dont know if i mentioned but i have SEVERE Claustrophobia and doing scans (except simple CT's) are near impossible (Adavans dont work anymore). I believe over the course of all these years its manifested into the whole 9 yards of surgery..one things for sure, im tired of getting cut open, ya its keeping me alive but, anxiety & the will to live are neck and neck..
The Surgery is rescheduled for Dec 17th, i realized i messed up, and i made alotta folks unhappy...im just tired of this shit, every year & a half since 2008 im gettin cut open..but anyways, enuff, its rescheduled..love ya guys...

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

Diane F's picture
Replies 3
Last reply 11/13/2018 - 6:38pm

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

Login or register to post replies.

ErinATC's picture
Replies 4
Last reply 11/13/2018 - 3:22pm

This is my first post, but have read many.

the person I’m writing on behalf of is stage 4. Metasis just about everywhere. Multiple lesions on liver, spleen? Lungs, pelvic area bones, and brain. 

He has undergone 4 rounds of ipi/nivo, and one round of nivo. Had radiation early on, about 2 months ago.

latest scans showed that he is responding to treatment, which is astonishing. 

Now, he feels worse than he has in months. Energy is at an all time low, and pain throughout his body.

I’m curious if anyone has experienced this even after finding out things are working. Tumors have shrunk by up to 30-50% in most cases. Just one stubborn one on the brain that is stable.

there was a discussion of steroids a few weeks ago, but doctor decided against it because he was responding so well, and they didn’t want to mess with the treatment. 

Anyone else that has gone through this? any stories would be appreciated.

 

thanks!

Login or register to post replies.

Debbiemartis's picture
Replies 2
Last reply 11/12/2018 - 11:03pm
Replies by: Debbiemartis, mandyjill

I have over 10amelanotic melanomas. I had invasive melanomamelanomas, stage 1 in 2005.  In July 2018 found 6 amelanotic melanomas and the number has been increasing since then as I am learning what to look for. With surgery margins are not clear on most of them. 

Has anyone had a similar situation?

Are there other treatments options?

Login or register to post replies.

mortalMike's picture
Replies 4
Last reply 11/12/2018 - 10:03pm
Replies by: mortalMike, lkb, casagrayson

Thank you Lord. Just got off phone with my doctor and he said the nodes came back negative and that he got all of it when he carved me up.

You guys have been soooo much help and comfort. Thank you all very much. I will point people to this site that have problems with this stuff. Question: I have been officially labled as someone who had a cancer growth. They say it has been cut out. Where did it come from and is it really gone or is it just that patch of skin thats clean for now?

I hope you dont mind if I stick around for awhile. 

Respectfully,

Mike

Login or register to post replies.

SABKLYN's picture
Replies 10
Last reply 11/12/2018 - 5:47pm

Just wanted to wish you good luck and a successful procedure on Monday!   I’m sure you’ll have the full weight of prayer and good wishes from all of the crew of the MRF Pirate Ship!!!

speedy recovery, my friend.

Best,

Stan

Login or register to post replies.

MelanomaMike's picture
Replies 13
Last reply 11/12/2018 - 5:00pm

Hi guys, sorry iv been outta the loop for a bit lately, feeling woozy and blah due to more Thyroid issues, my Endocrinologist up'd my dose (Livo)to 175mcg, its went up twice now in like 6 months, T4 seems to stay at o.8 to 1.0 and TSH is 14.59 a bit high (im Hypo)but no where near what it was when my Thyroid first took a crap after i started Keytruda last year in (Nov2017) wich was 45.9! I really felt that one, i was layed out..
Anyways guys, thank you all for my well wishes & speedy recoverys for Mondays Surgery, someone asked "where" it will be at Kaiser in Panorama City, by a great Doc name Dr.Wael Yacoub, hes very cool & believes this is a good move for my treatment otherwise the 5.4cm Mel Monster is just gunna get bigger since its defying all immunal drugs, its Not a cure we both know, but it will only get bigger & grow outside the lung & even BIGGER problem can occure..I tell ya, im NERVOUS as hell but im going, i wanna get this bitch out of me..thanks for having my back and i plan to write you all once i wake up, im sure I'll be in there for a few days..love ya guys.

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

Rosiepup's picture
Replies 1
Last reply 11/12/2018 - 4:55pm
Replies by: jbronicki

Sorry, I didn’t mention in my last post that I also have Young Onset Parkinson’s Disease, which was diagnosed 10 years ago, aged 45.

 My oncologist has not had anyone else with Parkinson’s.  No issues with my Parkinsons meds and debraf/meck but I wonder how immunotherapy will be?  Is there anyone else with both conditions? 

Thanks Fi 

Login or register to post replies.

Pages