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
jsmith279's picture
Replies 4
Last reply 12/16/2018 - 6:02pm

I have no idea what I am doing, but I'm just going for it...

Jen

Login or register to post replies.

TexMelanomex's picture
Replies 3
Last reply 12/16/2018 - 2:15pm
Replies by: lkb, WithinMySkin, Bubbles

Warriors, inspired by Celeste I have finally formed the bones of a blog I've been meaning to put out there. It shows the physical aspect of my battle with melanoma and the treatment progression including WLE, skin graft, lymph node dissection, and of course PV-10!

It is somewhat graphic so the faint at heart should skip the site. Like I said, its just the bones and I plan to put much more content into it. Unlike Celeste's blog it will not contain useful clinical infornation, I'll leave that expertise to her. This is more of an informal glimpse into what my battle looked like from the outside and maybe later I'll add what it was like on the inside.

www.melanomawarrior.org

Warrior On!

 

Tex

Tex

Login or register to post replies.

fdgfdgfdgf

Login or register to post replies.

obftwmlg10's picture
Replies 1
Last reply 12/15/2018 - 11:51pm
Replies by: Janner

Hopefully this story won’t sound too self indulgent. In the summer, my other half noticed a mole and thought it had changed. Went to GP who said it was harmless but would take it out anyway. Due to being told it was harmless, I didn’t get it out for a couple of months. That was on 12th November. It came back 1b superficial spreading and I got a hospital appointment three days later. The hospital said that all the tumour has been removed by my GP and he had taken a good safety zone too. However, they want to do a WLE in January. The doctor at hospital checked me thorough ly and felt no issues with my lymphs. They won’t consider SLNB necessary. I’ve to be followed for a year . Got a letter with the full result of my tumour. It was a 0.8mm non ulcerated superficial melanoma and had a zero mitotic rate. I understand this is positive. Anyway, despite feeling reassured, I’ve started to get really worried that my body is full of this illness and things like worrying that a cough shows it’s spread and they didn’t notice. I’m worried because the irrational side of me is taking over.

Login or register to post replies.

Summer S.'s picture
Replies 6
Last reply 12/16/2018 - 3:38pm

My mom was diagnosed with Stage IV in May, although I am fighting by her side everyday, I feel extremely anxious lately especially with two consecutive progression reports over the past 7 months. I also feel rather helpless and sad and most of the time, I was rushed to the ER last week due to severe anxiety and lack of sleep that heavily affected my body. 

How do you guys stay so strong? how do you live with the diagnosis and enjoy the precious moments you have with your beloved ones ? how do you live normally knowing things may never get better ...

And especially for caregivers out there, how do you survive the feelings of guilt and helplessness

 

Login or register to post replies.

Summer S.'s picture
Replies 4
Last reply 12/16/2018 - 6:14am
Replies by: Summer S., ed williams

Hi :))

My mom 71 y/o was diagnosed with Stage IV melanoma in May, since tumors were only spread across the skin and distant lymph nodes doctors decided to start with Immunotherapy alothough she was PL-1 negative. After the first 3 months LDH levels dropped and she was feeling better (more energy, less muscle pain, no itching ..etc) but PET/CT revealed progression, so we continued for another 3 months hoping that it would be psaudoprogression. Unfortunately, it was not. So her doctor recommened Zelboraf 

I have been reading about how Zelboraf if not actual cure, it only slows progression or stops it for while, and I am very scared and frustrated now.

I arrange all her doctor appointments, insurance, nutrition, ..etc especially that we live in an African country where melanoma is extremely rare and health care system is complicated anyway. So I really need your advice on what the next step should be? is there an actual solution I should be working on now? 

She is starting on her first dose of Zelboraf tonight,  and I really hope for the best, but I want to be prepared for the next step. 

 

Login or register to post replies.

lkb's picture
Replies 5
Last reply 12/15/2018 - 5:27pm

Thank you, everyone, for making this such a helpful place!

I’ve had progression while on Nivo. The oncologist recommends a one-time radiation/gamma knife for a single brain met, and says side effects are minimal and rare and the treatment has an 80% success rate. Suggestions for good reading on this? Has anyone here had a one-time treatment for a brain met? Results? Side effects? Other comments? Thanks.

October 2017 primary scalp WLE; SLNB; partial neck dissection. July 2018 recurrence in neck. August 2018 second partial neck dissection. September 2018 started Nivo. December 2018 brain met + recurrence in neck.

 

Login or register to post replies.

RichInLife2's picture
Replies 2
Last reply 12/15/2018 - 6:56pm
Replies by: MelanomaMike, Bubbles

I thought I would share the following links. The first is an amusing "trial" that brings up some serious issues around clinical trials, how they are run and how they are interpreted. The second provides some context for the first.

https://www.bmj.com/content/363/bmj.k5094

https://blogs.bmj.com/bmj/2018/12/13/we-jumped-from-planes-without-parachutes-and-lived-to-tell-the-tale/

 

tl;dr: before jumping to conclusions, take all trial results with a few grains of salt.

Login or register to post replies.

Sar4h's picture
Replies 3
Last reply 12/14/2018 - 10:39pm

Hi all,

I have been trawling through 100s of posts on this forum over the past month and I just wanted to say that I think this forum is a great place for support, reassurance and advice - so thank you.

Following a seizure in October my partner (45 years old) was diagnosed with stage 4 melanoma with 3 brain mets and 1 lung met in November. He had brain surgery to remover the larger tumour to give his brain some 'space'. One down - 3 to go.

He had his first dual immunotherapy (ipil & nivo) on Wed 5th Dec.
I had to rush him to A&E on Tuesday 11th Dec following a temperature of 39.3, a skin rash and a slight cough. It turns out he has pneumonitis.
He is currently recovering very well in hospital from these side effects and we are hoping to have him home for Christmas to celebrate our 5 month old daughters 1st christmas together as best as possible.

The Dr's have advised that he will have to come off of immunotherapy and try an alternative treatment. He is BRAF positive which is good as that gives us another option.

However, I am petrified.
I have read so many great stories of people of immunotherapy surviving many years with Melenoma or NED and was hoping the same for us but with immunotherapy now out the window I worry that his chances have been halved. Am I wrong in thinking this? Have there been good survival stories on just BRAF targeted treatment and stereotactic radiotherapy?

If the BRAF and radiotherapy are successful and the melanoma was to return, would immunotherapy be an option in the future still?

He is my absolute world and such a good daddy to our beautiful daughter. I can't bear the thought of her not knowing him and what an amazing person he is.

We are in the UK so we are a bit behind you guys in the USA in terms of melanoma treatment plus I think some treatments are not available on the NHS so I worry the doctors won't tell us about them but we do have private health care that we can fall back on if needed. I will do anything for him.

Thank you in advance for any help or support you can give. I'm broken and am not sure where to turn. Xx

Login or register to post replies.

KyleS's picture
Replies 3
Last reply 12/15/2018 - 11:04am

Hey all,

I have lurked here for many years and this is my first time posting.

I was diagnosed a few days after my 17th birthday which was in 2006. Since then, I have had various treatments, 5 surgeries and 4 recurrences / metastasis.

I have had the following treatments:

Interferon (one month), Chemobiotherapy trial - Cisplatin, vinblastine, dacarbazine, il2, interferon - (3 cycles 1 week each), IMRT (Radiation one month), High Dose Il2 (2 courses 2 weeks each), Dabrafenib (1.5 years), Ipi/nivo (2 cycles) + nivo (13 cycles) + SBRT (Radiation 1 week).

The point that I am trying to make is that if one treatment fails, there are many options out there. Treatment choices have come a long way since I was diagnosed. I wont lie, there were times where I felt hopeless, but I managed to keep chugging along. I am happy to report that I have been NED since June. Always stay positive and let's hope that we find a cure for 100% of the patient population. Merry (early) Christmas everyone!

Login or register to post replies.

I'm wondering if anyone else is doing that combo and what your side effects are like?

I did Taf/Mek for a year before I developed leptomeningeal disease this summer.  I did whole brain radiation which we were told didn't work.  I then developed hydrocephalus which almost killed me.  When I stabilized I did two doses of IPI/Nivo.  I think we got some benefit.  While I was on IPI/Nivo I was accepted into a trial at Md Anderson where they inject the nivo directly into the brain via a port, exciting stuff!  Unfortunately, I got kicked out after the first treatment.  I'm feeling really well all things considered and I'm just looking for some hope with all of these treatments together.

Caitlin

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

I had noticed a new spot on my lower leg about a year ago. It looked as a sun spot. I have 3 children and we are outside most of the time in the summer. I always apply sunscreen on their bodies diligently. I neglected applying on myself due to complete ignorance. Well as time progressed I noticed the spot getting larger and darker however I assumed it was due to the sun. Well recently it has grown in size with different shades and irregular border. I made an appt with my PCP and also found a dermatologist that would see me within a few days. Pcp agreed it was suspicious. Finally the day, yesterday actually, came and i was nervous as hell to see the derm. The medical Assistant came in and I showed her the lesion and she said OK that’s all you’re here for and I said well I’m here can we do a whole body check please she agreed. They set me up to see if physician assistant who came and did a quick scan of my body in about two minutes and noticed the lesion and I told her how anxious I’ve been as I am a nurse myself and I’ve seen a grown evolve and change colors. She said well we’re going to biopsy it I said OK great. she wants to do is shave biopsy I did not want that I requested an excisional biopsy due to if possible melanoma correct staging and just overall better she said absolutely not she knows what she’s doing she’s been doing this for 11 years and I’ll be fine she’ll just go a little deeper. She said she didn’t have wnough time do do excisions biospy due to waiting over an hour in the waiting room and almost was of day. I felt so rushed.  I was very apprehensive however I wanted it off my leg as soon as possible due to fear and just getting it off of me I’m currently awaiting results I have pics to post pics

 

Login or register to post replies.

mrsaxde's picture
Replies 4
Last reply 12/15/2018 - 12:24pm

"Sitting here in limbo....but I know it won't be long...." So sang Jimmy Cliff. In my case I'm starting to wonder how long.

I saw Dr. Sharfman on 12/6. He ordered a brain MRI because the one I had at NIH showed two questionable new spots but somebody there goofed and the scan was done without contrast. It took until this past Tuesday morning for his secretary who handles insurance to get all the records she needed to send to Blue Cross so they could farm them out to the outfit that decides for them whether they should pay for "high tech" imaging. She said she expected to hear back from them by Wednesday or Thursday. I still haven't heard anything. Nothing scheduled yet. Yeah, let's talk about "wait times" in other countries.

NIH is supposed to be testing my cells to see if I qualify for the MAGE protocol. Two weeks and I've heard nothing from them, after being told it would be about a week. Frankly I'm not too concerned about this because I've largely decided not to go through that -- the same procedure as the TIL trial, sans surgery -- again.

Everybody agrees that I need some sort of treatment. But Dr. Sharfman can't look for a trial until it has been determined whether I need more brain radiation, and that can't be determined until I get this damned MRI that my insurance seems to be in no hurry to do anything with. (This isn't an end of year scenario where they're trying to have me pay more by not approving it until after 1/1. My insurance year starts 7/1.) For want of a nail, the horse was lost....

At least I've been feeling better the last few days. I'd be losing it by now if I wasn't feeling good.

"Sitting here in limbo, but I know it won't be long.

"Sitting here in limbo, like a bird without a song.

"They're putting up resistance, but I know that my faith will lead me home."

Thanks for the chance to vent.

-Bill

Login or register to post replies.

jsmith279's picture
Replies 7
Last reply 12/16/2018 - 2:53pm

Husband just got dx'd on Wednesday 12/12/18 - our first oncology appointment is Jan 7 2019 and I am scared to death. Not only does my husband have cancer, but the oncology appointment is the same day my dad died in 2002. So THAT day isn't a good day for me anyway. I am a wreck, my husband "appears" to be holding it together. I think he's doing that for my benefit. We have been married for 27 years, this man has never been sick and out of no where .. he has Melanoma. It is on was on his chest and believe me when I say this mans chest has never seen the sun. 

Login or register to post replies.

lkdsnfljlfjslk

Login or register to post replies.

Pages