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
thinkingofu's picture
Replies 14
Last reply 9/10/2017 - 2:35pm

Dear All, 

Hope you are well

My mom is to have her first infusion tomorrow (finally) (yevroy+opdivo) and we were wondering if you could please share some tips as to how get through it as easy as possible. In term of food, drink, etc. Thank you xxxx

Login or register to post replies.

CindyJ's picture
Replies 4
Last reply 9/10/2017 - 12:52pm

Hello all ~ I wanted to share my Mom's good news regarding the trial study using Genomics. Background, she had a deep ulcerated melanoma on bottom of her foot and spread to toes. Removal, skin graft, and CLND in groin and pelvis. Wait and see. A year and a half later fast growing melanoma found in lymph node further up pelvic chain (iliac) and possible lung met.

She received three Pembro infusions (immunotheraphy) beginning in late April then was switched to Ibrance (target therapy) in July. (The Onc didn't believe Pembro was working). After two pill cycles of Ibrance, her pelvis tumor has shrunk in half with SUV going from 17+ down to 6.3 and her lung nodule shrank with no uptake (could have been infection).

During prior testing, she was found to have three separate mutations that current cancer drugs are available for. Ibrance is a breast cancer drug that stops cancer growth by inhibiting CDK 4/6, she is CCDN1 amplified.

The Onc was rather shocked it worked so well so fast, and I'm not all that certain that Pembro didn't play a role, but we're both so elated. If immunotheraphy doesn't work for you, you may have a mutation that can be treated. Seems to be the next great step in cancer treatment. Best wishes everyone!

Login or register to post replies.

Jdc's picture
Replies 7
Last reply 9/10/2017 - 12:36pm

This may sound foolish to many, I had 1 round of yervoy on 7/20 10mg, about 2 or 3 weeks later severe headaches. Diagnosed with hypophysistis, have been on 100 MG prednisone for over weeks, they tried to wean down but headaches came back severe again so I'm back at 100 MG and still have the headaches just not as severe. I recently got statement from insurance company, my 1 round of yervoy the hospital charged the insurance company 957,003.49 A million dollar treatment? I was appalled, I do not want to sound ungrateful but I honestly don't know if I can feel comfortable receiving this treatment at that cost.doe's this even sound right? I hope to not offend anyone, I want to live as long as possible, I have a wife and 2 kids would live to have grandchildren. This is ridiculous though I'd rather that money go to cure some child's cancer

Joe

Login or register to post replies.

Spl25's picture
Replies 6
Last reply 9/10/2017 - 12:11pm
Replies by: Edwin, Mat, triciad, Spl25

Really looking for some positive news regarding mets on my pelvis and femur. I'm stage 4. They're very painful and don't appear to be responding like my other tumors to PD-1. Has anyone had a response on BRAFi or any other intervention? This is truly disappointing and the pain is keeping me from working and enjoying life as much as I'd otherwise be able to. 

Login or register to post replies.

trigirl67's picture
Replies 3
Last reply 9/10/2017 - 6:51am
Replies by: Sharon93065, Janner, Anonymous

I am stage iv and just found a dark spot under my big toenail. My questions are:

is it possible to be melanoma when I'm already stage iv,

would it show up on a PET scan or could it be missed? 

Its been there almost three months now.  

Trinity m Ballare

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 9/9/2017 - 10:38pm
Replies by: SOLE, Anonymous, Raluca, Bobman

First off, I'd like to ask if it's okay for me to ask a few questions here. I've not been diagnosed with melanoma yet, but all the dermatologists seem to think it's just a matter of time. My first dermatologist visit was for acne when I was about 13, and that was also the first time I had pictures taken of some of my moles and received the sun safety lecture. I'm very fair and have had dozens of 2nd degree sunburns; we actually thought I had a sun allergy for awhile frown

My last dermatologist visit was during the summer where my mom had two Basal cells cut off and I had another skin check. She was instructed to go to a derm once every year, but I was still told to come in every 6 months, which seems kind of ridiculous considering I've never even had any skin cancer and I'm only 21.

My main question is about whether anyone else has a high number of atypical moles and if your melanoma resembled them. I know people always say to look for the ugly duckling, but for me, most of my moles are ugly in various different ways. I missed my last derm visit so I'm scheduled for one next summer, I was just curious about everyone's premelanoma stories. 

Also, a side question to those of you with multiple moles: how do you monitor all of them? I know change is a big one, but I can't monitor all my moles and I cant even see the ones on my back. I also imagine that with pictures all my moles would get mixed up, since I probably have over 40 just on my legs.

Login or register to post replies.

thinkingofu's picture
Replies 5
Last reply 9/9/2017 - 3:06pm

Hello everyone x

Just a little update. Mum had her firs yervoy+opdivo combination a couple of days ago. No side effects as of yet. Hope this is a good thing and does not mean that the treatment is not working. 

Also, they will be giving her first SRS treatment in a few days since those mets in her brain are not behaving well

Hope you are all well xxx

Login or register to post replies.

Has anyone experienced a met ( egg sized) to the epitrochlear lymphnodes?  If so how did the surgical removal and recovery go?  Your help would be greatly appreciated!!!

Login or register to post replies.

guynamedbilly's picture
Replies 4
Last reply 9/8/2017 - 9:45am

I just had my second injection last Thursday. I've had a headache since Monday evening. I did contact my oncologist and she said to try ibuprofen and call again if it persited past the weekend. That did help, but it is still hurts if I don't take it today. I'm wondering how bad pituitary gland swelling hurts so I can know what to watch for. Anyone have any experience with headaches in Novo?

Login or register to post replies.

RitysMom's picture
Replies 10
Last reply 9/8/2017 - 8:32am

It's been over a month since I've posted...caring for Kristine has become all-encompassing for me. Kristine tolerated four ipi/nivo treatments, although not without complications. In fact, it seems as if it's been one complication after another and we're just trying to put out fires in order to keep her alive long enough to show a response.

She has deteriorated in many areas: her upper body has significant weakness now, in addition to her lower body...that has caused us to go to only using a hoyer lift to move her; she has also deteriorated neurologically...she's severely lethargic and is really confused.

She had an MRI/CT done on Tue 8/29 to see if there's been any response to the treatments. That evening, Dr. Freeman called saying that the radiologist found a dvt in her leg and a pulmonary embolism. We called 911 and went to our local hospital with the idea that she'd transfer to a hospital where Dr. Freeman could see her in the following days.

A filter was placed to catch the blood clots...thought we were done. Nope.

*She became almost comatose...unable to wake up, but does respond to pain. They have tried everything to get her to wake up: drain in her brain, taking her off fentanyl patch. She's breathing on her own, heart rate is ok.

*Her neutrophils are zero...they put her on Neupogen last Wed...not seeing any response.

The drs here believe her current state is due to the tumor burden in her brain and nothing can be done.

On top of all that, Dr. Freeman says her MRI shows a 20% reduction in tumor size...she's actually responding to treatment!

Dr. Freeman had been in daily contact with the drs here up until Saturday. I'm hoping she weighs in tomorrow on where we are. 

Not sure anyone can help, I'm just feeling we're at the end.

Cindy 

Mom of the beautiful Kristine

Login or register to post replies.

Beth Reilly-Stark's picture
Replies 1
Last reply 9/8/2017 - 8:28am
Replies by: momsmole

Hi everyone, 

I had a move removed from my right thigh back in June of this year. My wife thought it felt a bit unusual, so I went to get it checked, it was removed 4 days later. 

Got sent an appointment through for two days ago after not hearing anything in regards to results, the dermatologist confirmed it was melanoma in situ. Had an appointment with a plastic surgeon yesterday who is scheduling me for a wide local excision and skin graft, and said if all goes well I won't require further treatment. 

My emotions have been all over the place, I realise I'm very lucky it was caught when it was but I think I'm in shock, it's all happened so quickly. I have an appointment with a cancer nurse in a few weeks time as well and have been told what signs to look for in future. 

Has anyone else had a similar situation to mine? I have a lot of moles and I'm worried in case I miss something. 

Thanks for reading,

Beth

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 9/7/2017 - 11:54pm

Anyone have any experience with large tumors in abdomen area?  My husband was rushed to the ER last week with the starting of a distended abdomen and other symptoms. He was clear 3 months previous. Very very scary and in the hospital for a week. He is now on Taf/mek. 

Any info would be appreciated. 

Thank you. 

Login or register to post replies.

Leigh S's picture
Replies 6
Last reply 9/7/2017 - 12:16pm

Morning all,

I recently had 2 x suspect moles biopsied and removed by my GP. One was clear but the second not so much. Have attached the pathologists report re the second one. To say this is absolutely terrifying is an understatement. Any help interpreting the report would be greatly appreciated!

' Sections show a biopsy of sun damaged skin extending to deep dermis with a junctional melanocytic proliferation. The lesion shows some features of irritation including pigment in incontinence and some pigment in the stratum corneum however there is assymetry to the distribution of melanocytes as well as some upward migration and cytological atypia of melanocytes with macro nucleoli. A sox 10 immunoperoxidase stain highlights the melanocytic proliferation. The possibility that this lesion represents a dysplastic junctional naevus with features of trauma is considered, however, given the constellation of features the appearance is best regarded as representing evolving melanoma in situ. The lesion is 1.1mm from the nearest inked margin '

 

Login or register to post replies.

vpettis331's picture
Replies 2
Last reply 9/7/2017 - 11:30am
Replies by: vpettis331, Janner

Hello! Yesterday I went to the dermatologist for my first ever overall check. I just turned 30 and have spent a fair amount of time in the sun, so it was time.  After completing the examination, my Dr looked at two areas (one on my back and one on my left leg) with his dermoscope and advised me that he was going to need to do a shave biopsy on both. While marking the mole on my leg, he made the remark to his medical assistant that this mole was a "level 2" and she made note. The only thing he said was that they looked abnormal and that's why he was removing them, but they were probably nothing. After getting home and researching what "level 2" could have meant (just out of curiousity), I am beginning to become concerned that he suspects Superficial Spreading Melanoma due to the moles age and characteristics.  I have had this particular mole for as long as I can remember and it used to be perfectly round, but has grown jagged/asymetrical borders and changed colors over the last couple of years. I learned about ABCDE and the mole on my leg has/had several attributes of a SSM. Anyone else have a similar experience or know what "level 2" could have meant?  I am not one to make a "mountain out of a mole hill" and I am genuinely curious as to what "level 2" refers to.  I am a little embarrassed to say that I clammed up and didn't ask because I was intimidated because the Dr was outrageously good looking HAHA. Usually, I would have asked right then.

Login or register to post replies.

Chelle White's picture
Replies 2
Last reply 9/6/2017 - 11:12pm

No staging yet. Saw dermatologist end of June - sent to Plastic Surgeon 5 weeks later - thought I was getting them removed then -nope just a pre-appointment. Cried so he biopsied one - 2 weeks later went for follow up and path report came back as .55, level 3, mitotic rate 1 - scheduled flap surgery for 9/5. While waiting for surgery called reg physician for my questions - never heard back. Called derm - she explained we wish to see insitsu but mine was level 3 in testicular. Asked her what I need to do - she said I'll need to make appt with oncologist once the surgery takes pla e and pathology report comes back.
Went and called an oncology center telling them my surgery wasn't until 9/5 So they scheduled an appt for 9/21.
There's been no blood work and I didn't have any biopsy or that dye thing with a lymph node.
I feel lost - what am I missing? What should I be doing? What should I be asking? I feel like this has been going on too long without answers.
I go on Friday for bandage changes. Haven't had to use my rx'd painkillers. Slightly uncomfortable but not horrendous.
Thank you.

Login or register to post replies.

Pages