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
Scooby123's picture
Replies 6
Last reply 6/9/2017 - 2:15pm

Hi all, Can you please give me a time scale on waiting for pet scan results. I had mine on 25/05/2017 not got results back as yet. I have called nurse yesterday not heard from her as yet. 2 weeks now .My next appointment and scans will be August but this scan was ordered due to chest lymph nodes up .

Scooby x

Login or register to post replies.

adriana cooper's picture
Replies 5
Last reply 6/8/2017 - 3:16pm

First our thoughts and prayers are with all of you during these difficult times for many on here. It has been challenging emotionally for me with all that has been going that I have not posted much recently. Although we have been extremely fortunate to be able take a few steps back from that horrible edge that we were very near, my inner voice (as much as I try to ignore it and push it down) asks daily, is today the day that the other shoe is going to drop and we return to that cliff edge? We do still have ongoing issues but are coping. I remind myself one day at a time. Live life. Make fond memories. 

We will again be attending the symposium in Seattle on Saturday, although only in the AM as Adriana crosses more bucket list items off (and creating others,) getting to see her son graduate from HS in the afternoon. BTW she has just past 5yrs since first diagnosis, 3 years stage IV. Please introduce yourselves to us if you are there. We look kind of like this although Adriana has no hair now.

 https://drive.google.com/file/d/0B3UCziLUFYcHUFRxMzE2eHNuX00/view?usp=sh...

Also we will be in Los Angeles June 13-20 for a vacation/grad present/honeymoon get away, staying near Disney but traveling all about seeing the sights (any suggestions). Coffee anyone maybe? Jen-Snow White? Send a email harborhits@gmail.com.

Best wishes strength and peace to all on here. 

Adriana

Login or register to post replies.

jennis3b's picture
Replies 5
Last reply 6/8/2017 - 8:01pm
Replies by: MaPerny, jennis3b, Anonymous

I had my 6 month scans Monday after coming off of treatment. They found a few new things since the scans 3 months ago. They found a small lesion on my liver as well as small nodules in my left breast and right shoulder. They're being watched for my next scans. Doc says they're too small to do anything about now. Any advice?

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

Login or register to post replies.

momof4boys's picture
Replies 22
Last reply 6/17/2017 - 5:15pm

https://www.afterlife.co/us/obituary-lombard-joshua-b-faillo-3557594. This breaks my heart to post this. RIP Josh.

Login or register to post replies.

Shaneswife's picture
Replies 12
Last reply 6/8/2017 - 3:46pm

I'm so devastated. Shane had a DNR put in place. I understand why but it's so very painful to live through this. Knowing I can't call 911 for him if he stops breathing during a seizure breaks me inside. We now have a hospice doctor coming to the house to treat Shane and nurses daily providing care along with myself and family. Shane kicked the psw's out of his treatment plan as he was too uncomfortable with them. 

I lay awake at night and just wonder if we'll get through another day together. His PPS is 50% so I doubt there is much time left. 

 

Janis

Login or register to post replies.

smiller's picture
Replies 11
Last reply 6/13/2017 - 10:27pm

 My husband made it through three treatments on the opdivo/yervoy combo.  Had to stop because of the side effects he was experiencing.  We are meeting with his doctor next Wednesday to discuss other options. He mentioned trying Keytruda or going ahead with opdivo alone.  Any help/suggestions will be helpful in making a decision.  By the way--the treatments that he had did make a difference in the size of the tumors--they all shrunk except adrenal glands and doctor said they still had the possibility of shrinking.

 I learn so much from this board--thanks to all who post. I rejoice when I read the good news of someone responding to their treatment and I am sad when someone has to post that treatment has to stop because it didn't help.

Thank you!

Jim's wife

 

 

Login or register to post replies.

zfishberg's picture
Replies 8
Last reply 6/8/2017 - 5:48am

It's sadly that I have to post another sad note after Shane's wife one.

After the second ipi/ nivo infusion Greg started experiencing problems with walking, fatigue, falls.

we went to ER on Friday and after the MRI was performed , the doctors concluded that they can't help him in any way.

He is on home Hospice now with additional help from the Home Care agency staff.

It's very painful to observe the rapid deterioration in his mental and physical abilities.

 

 

Login or register to post replies.

Michellebelle's picture
Replies 1
Last reply 6/7/2017 - 3:43pm
Replies by: FaithRun

Hello everyone, 

 

I recently went to the doctor for a suspicious mole. Unfortunately, it's on my face. It was very tiny, black, and almost looked like a white head (but was black). It was new, had just showed up sometime within the last year on my cheek. I went in as a precaution since skin cancer runs in my family (but not melanoma). The doctor said it was black and blue with an outline of brown. It was a normal circle shape, popped up like a pimple. I think it was 2mm. 

She told me it's a 50/50 chance for melanoma or just a blue navius. I had a melt down at the doctor. I'm 29, about to be 30 next week, and I can't believe it.

Right now I'm playing the waiting game, which I'm not doing very well. I keep thinking about how I had swollen glands in my neck a few weeks ago, and really scaring myself. 

I'm just curious if any one out there has had a similar mole. Mine doesn't look like a clean cut case of melanoma. It could be a blue navius. I'm praying it is. 

But in the meantime, I'll be praying for all of you. When something like this happens, you don't realize how lucky you have it. I've never realized how much I loved my face until they wanted to start possibly cutting it all up. I hope my results come back ok, and I won't ever return to this forum again, but in the meantime, I'm thinking of you all, and wishing you all strength. Just the possibility is devastating for me. 

 

Thinking of you guys

Login or register to post replies.

ronanda's picture
Replies 4
Last reply 6/14/2017 - 12:00pm

Hello! I am curious to see opinions about a new mole that appeared by my belly button. Please see my profile photo. ... my MD quickly looked and dismissed this one. He will not refer to a dermatologist. I know that diagnosis cannot be made via photo and only professionals can, but if this was your new mole, would you agree with him and drop it, or pursue the issue further? I appreciate your opinions greatly!

Login or register to post replies.

MikeW's picture
Replies 10
Last reply 6/7/2017 - 4:57pm

My first scan since starting therapy 4 short months ago was clear of tumors. I'm beyond thankful.

Since January, I've reached out with newbie questions and fears to get quick, informed and empathetic advice. I'm humbled by the melanoma experts and veterans here and I don't feel like I have too much to offer back as I'm still learning about how immunotherapy works and the disease itself. I know I'll continue to read this forum every day to get educated on what I now know will be a lifelong battle. 

Amidst the combination of those that have recently been diagnosed and, sadly, those that have succumb to this disease, I wanted to share my journey.

I hope this news provides more validation that the science is evolving and based on what I read here, on OncLive, Nature, etc. there is a lot of passionate research focused on melanoma.  

I was diagnosed in Jan '17 with small-ish mets to the right lung. I am being treated at The University of Chicago by Dr. Luke.  

My wife and I went to 4 different docs to understand the treatment options. 3 out of 4 recommended the combination therapy (Ipi/Nivo) as I was in good condition to deal with toxicity combined with the response rate vs the next best option.

Dr. Luke provided an alternative choice of Keytruda based on the lower tumor burden, lower LDH counts and good health. I was nearly in the epacadastat trial (combined with Keytruda) but had difficulty getting a relavant sample to ID the tumor variant. So, in lieu of another lung biospy, we forged ahead with the Keytruda.

My journey consisted of 3 treatments ande was paused due to auto-immune side effects of joint inflammation and elevated liver enzymes.

I have been assigned to a rheumatologist and we are continuing to monitor the liver and inflammation which is being treated with steroids.  I'm now able to walk more comfortably but still have stiffness from neck to big toes across all joints. The treatment is still paused and we'll reassess after the next scan in August. 

A huge thanks to those active on this forum, those that have responded to my questions and those that have answered them before I've even thought to ask. 

On of the best things I've read on here is "while I may have melanoma, it doesn't have me."  

Love and fight on...Mike

Mike

Login or register to post replies.

Hi all,

Haven't updated on my sister, Leisa, in a little while, so here goes:

- now down to one tumour left in the liver (from 5) - that's the biggest change since her last thoracic scan 3 mos. ago

- spleen is still working at getting clear but from reading the scan it's hard to tell how many are left there - they seem to only talk about the largest one (or at least only give measurements for the largest).

Best news: nothing new and no further progression - yayyyy!!!!

She had a brain scan yesterday morning and we're holding our breath waiting for this one. If all is stable, she'll be cleared to drive again. Her last scan 3 mos ago was rated as "stable" - there were no new visible lesions. There were however innumerable little white spots which they wouldn't rule out as new mets starting but they really felt these were the result of WBR damage beginning to appear ... and as it coincided with cognitive damage showing up (her short term memory has been affected), we're hopeful the doc's correct in that appraisal.

1st Q - Re. lymphocytes - she peeked at her blood results a couple of weeks ago while getting an infusion and there were several items circled in red - one was the lymphocyte count - it's low. Researching this, it seems that low lymphocyte counts are a disease marker (and associated with poor survival) but I'm wondering if hers are low specifically because her spleen is still compromised. Otherwise, you'd think that after 20+ infusions, that count would be normal or even a bit high. If anyone has any info on this, I'd appreciate hearing it.

2nd Q - Re. trial protocols - originally, she was to have 24 infusions of nivo over 48 weeks (a couple of times, we've been given wrong info about this, including that it was to be 48 infusions over 2 years). She's had 22 infusions and though they are giving her one more next week, they say she's done and that her trial is not so much concerned with number of infusions but that it's the time factor - the 48 weeks - that's more important. Has anyone else ever encountered this?

She's undertandably nervous about coming off treatment when we are nowhere near NED. Yep, we know the nivo will keep working but still ... A year ago, with a huge tumour burden and numerous brain mets, this looked hopeless - now she's come this far, it seems crazy to go with "wait & see" when we are (possibly) so close to NED. We also inquired about removing the spleen completely - nope, they won't.

So, that's where we are at. Just want to say that, in the midst of our successes, we know how quickly this disease can turn, for better or worse and we continue to hope, pray and plead with the "gods that be" for that "magic bullet" for everyone here!!!!

Best thoughts and big hugs to all of you!!

Barb

Login or register to post replies.

gowlandang's picture
Replies 3
Last reply 6/7/2017 - 1:25am

Hi, I am new to the board and this is my first time posting.

My husband was diagnosed with mucosal melanoma on his vocal cords in February this year. Originally the oncologist thought it was a wrong pathology report as they had never seen it before, but after retesting it came back with the same result. They suggested surgery due to concerns of restrictions to his airway, we opted to wait and have tests to find if it was anywhere else in his body, all came back negative.

When we went to see the radiation oncologist he told us that the surgeon suggested not to go with surgery but recommended radiation. After 20 sessions of radiation it is no longer bleeding and there are no breathing issues, his voice is horse all the time and the radiation has made him very fatigued. We now have to wait for a scan date and the next appointment is not scheduled until August.

Anybody out there in a similar situation? Any suggestions what other treatments maybe available ?

We live in Canada by the way.

 

Login or register to post replies.

Shaneswife's picture
Replies 10
Last reply 6/6/2017 - 10:03pm

I'm so sad these past few days. I watched cancer in a single week span take my husbands cognition and comprehension away. It's taken away his independence as he has to be watched 24 hours a day. My heart is so broken and hurts for him. The rapid decline is so hard to watch and I can only imagine what it's like for shane. The brain damage caused by swelling in his brain appears to be a permanent condition as even a week at 16mg of dex hasn't resolved it. 

My nerves are so shot that I'm experiencing hives constantly and scratching raw. I feel like they are caused from emotional pain as Benadryl doesn't even touch them. And as soon as I start to get anxiety they start too. How weird how the body reacts to stress. 

I'm hoping that by tomorrow the hospice doctors are able to start engaging while we keep Shane at home for as long as we can. Our hpc doctors make house calls. 

 

janis

Login or register to post replies.

RitysMom's picture
Replies 4
Last reply 6/7/2017 - 12:52am

Kristine is in the midst of tapering off steroids and has had a new side effect/symptom pop up. She has been feeling numbness in her right foot, and both legs from the knees down feel restless. Has anyone experienced this? Could it be a result of the tapering or the brain mets themselves? On a positive note, the other side effects she was experiencing (headaches, blurred vision, dizziness, etc.) have subsided.

Cindy 

Mom of the beautiful Kristine

Login or register to post replies.

Pages