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
Anniejoy1's picture
Replies 6
Last reply 12/17/2013 - 9:57am
Replies by: Anniejoy1, Janner, POW

Hi all:

It's been 4 months since my WLE & lymph node dissection. I recently had 2 urine tests come back positive for Melanin, has anyone else experienced this?

 

I'm hoping it's some supplement I'm taking that has caused a false positive.

Thanks

Annie

 

Login or register to post replies.

Mat's picture
Replies 3
Last reply 12/16/2013 - 9:33pm
Replies by: Mat, Moodypoodle, Richard_K

I have a good friend that was just diagnosed with pancreatic cancer.  Does anyone know of a resource that is comparable to this site for pancreatic cancer patients?

Login or register to post replies.

Anonymous's picture
Replies 10
Last reply 12/16/2013 - 7:06pm
Replies by: natasha, Anonymous, smurph226, Ktmay, Janner, casagrayson

Hi, i had a mole removed from my thigh and have been told it was stage 1a melanoma and only 0.2mm. I realise as things go I'm very lucky. I am due to have a WLE in a weeks time and I'm ok with that. What I am worried about is my future. As a sun worshipped, I realise that has to stop but will I still be ok in the sun covered up with sun block. I've only told a few people about this and they seem to think my mole is gone so that's it all sorted. I don't feel like that and I'm quiet emotional and not sleeping very well. I understand I'm low risk but do statistics mean no re occurrence? I'm sorry to share my worries with you when a lot of you are in a worse place than me.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 12/16/2013 - 10:48am
Replies by: POW, Anonymous, arthurjedi007

Does anyone have any experience with this trio?  The doctor is adding Ipi on Monday as the combo is not working.  

Thanks.

Login or register to post replies.

out4air's picture
Replies 1
Last reply 12/16/2013 - 8:38am
Replies by: Gene_S

My husband had been on Z from May through November when it stopped working.  We could tell because we started seeing growth on his scalp and new melanoma spots appearing.  Back to Moffitt/Tampa we went and the recommendation is to go off Z for two weeks to get it out of system before starting Yervoy (ipi).  His first Yervoy transfusion was 12/3 and so far he is doing very well.  Our oncologist said that if he experiences any side effects most likely they won't appear until about 2-4 weeks and we probably won't see any changes for a few weeks either.  She said that in fact sometimes it gets worse before it gets better.  All CT scans, PET scans and MRI's done indicate no internal cancer.  He is diagnosed with Stage III Metatastic Unresectable Scalp Melanoma.

Over the two weeks he was off Z the melanoma grew at a rapid rate on his scalp with many new spots appearing and ones that were already there growing.  My question is if and when the Yervoy begins working and the melanoma growth stops on his head what happens about the current spots that are there now?  Is it safe that they remain there as long as no new growth appears?

Our Oncologist did not indicate to us that we would see the spots compeltely disappear but is that possible?

Has anyone ever had similar experiences?  I would appreciate any information or advice thanks!

We are in it to win it!

Login or register to post replies.

NYKaren's picture
Replies 11
Last reply 12/16/2013 - 3:55am

Hi,

according to UPS, my Mentkist will be arriving tomorrow. So far, I've experienced almost no side-effects from the Trafinlar. 

What have those who are on the combo experienced?  Rash, diarrhea, etc?

Al, how's it going for you?  Did Dr P start you on 1.5 mg 2/day before increasing to 2mg twice daily to check your liver function?

I can't believe that I am scared about this, but I am!

thanks for all advice/experience. 

Karen

Don't Stop Believing

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 12/16/2013 - 3:41am
Replies by: Anonymous, BethA in VA, kpcollins31

I hope this post will bring some hope to those who have been diagnosed with metastic melanoma.  This is about my daughter, who was diagnosed with stage 3C melanoma, ten years ago.  She had radiation treatment for 5 weeks, but was unable to tolerate the interferon treatments, so she has had no treatments for the last ten years.  She has been NED all this time, jogs five miles a day and looks like the picture of health.  If you want to see her story, see her profile under the name of Jompy, diagnosed Dec/03.

Login or register to post replies.

POW's picture
Replies 9
Last reply 12/15/2013 - 11:17am
Replies by: POW, Janet Lee, Anonymous, Fen, tasjacques, Brendan

I was just recollecting a very, very nice thing a melanoma patient's friends did for her. It occurred to me that this gesture would make a lovely gift for either a patient or a caregiver. Then I got to thinking that maybe others of you could come up with other thoughtful gifts that would mean a lot to people struggling under the physical, emotional and financial stresses of coping with melanoma. My suggestion is below. I would appreciate any other ideas you may have. 

Idea #1 - engage a professional cleaning service to come in and thoroughly clean the house from top to bottom. 

I don't know about you, but when my brother was sick, cleaning the house was near the bottom of my list of priorities. I didn't have the energy and dust mice in the corners just didn't seem all that important in the grand scheme of things. However, I was ashamed of the state of the house so I was very reluctant to invite people in. This lead to fewer visits to my brother and more social isolation for me. 

Another caregiver told me that her friends banded together and hired a cleaning service to come in for one whole day to scrub her house from top to bottom, including cleaning the carpets. For the first time in a long time her home was sparkling clean. Entering such pleasant surroundings after yet another long and trying day of  tedious traffic, boring waiting rooms and scan anxiety made her smile and feel relaxed. 

I think that was a lovely and creative gift for her friends to give her, don't you? 

Can you suggest anything else that would make a wonderful gift for someone who is struggling with melanoma? Has anyone done something really nice for you? Have any of you done something really nice for a patient or a caregiver? Do you have a secret wish that you hesitate to ask for? Filing all the papers that have piled up on the dining table? Mowing the lawn and caring for the garden? Volunteering to spend one afternoon a week helping the patient so the caregiver can get out for a few hours? Please share it here.

Login or register to post replies.

CasieLV's picture
Replies 2
Last reply 12/14/2013 - 2:27pm
Replies by: arthurjedi007, Janner

What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

Login or register to post replies.

hdelancey23's picture
Replies 4
Last reply 12/14/2013 - 1:52pm

So my mom saw her doctor last week and he said that once the steroids that she is taking to help reduce swelling in her brain quit working then things could go fast.  She is still at home and wants to stay home as long as possible. Yesterday I learned that her pain is increasing.  Her back is hurting and her head is hurting alot.  She is having a hard time getting around and getting up to get to her morphine.  She has been taking the steroids for around four weeks now.  The doctor said that the steroids could stop working as well around 6-8 weeks.  She told us yesterday that she may be in hospice before Christmas.  It makes me sad that she is in so much pain so I really hope that she decides to start Hospice soon.  To me Hospice does not meanthat you are giving up it just means that you need extra help in managing pain.  So we will see how things go this next week.  The good news about her starting Hospice is that she won't be in so much pain and she will be closer to us so we can see her more and help out a little more.  She remains unbelievably strong and brave, she has never once given up and still hold out hope for compassionate use of the PD1 trials.  

Login or register to post replies.

WendyD.'s picture
Replies 5
Last reply 12/14/2013 - 12:37pm
Replies by: Janner, WendyD.

I was just diagnosed with melanoma Dec.6,2013. Here is what my pathology report says: Malignant Melanoma Breslow thickness .30mm, no ulceration,mitotic index per mm square 0, peripheral margins negative, deep margins negative, lymphovascular NIL, AJCC/TNM classification: pT1a NX MX. My doctor said he got all of the melanoma out during my intial biopsy. So with that said will I have to have a SNB and WLE? Any information will be greatly appreciated.

In God I Trustsmiley!

Login or register to post replies.

Codnibbler's picture
Replies 1
Last reply 12/14/2013 - 12:22pm
Replies by: Janner

Hey guys, I have a mole in my armpit that is concerning me. It is starting to itch and the skin around it is getting flaky. I showed it to my Primary Dr and he wants to biopsy it. I have had 10 displastic moles removed in the past 10 years since my chemo & radiation for Hodgkins Lymphoma. I have an apointment for the biopsy, in 2 months. Any advice?

Login or register to post replies.

ncdaniel's picture
Replies 6
Last reply 12/14/2013 - 9:51am

My wife is currently undergoing chemo with three different chemo drugs and I was wondering if anyone has had any success with them  or reduction in tumor size.?  She is getting  Vinblastine (Velban) , Cisplaatin, and TEmozlomide (temodar). She has already gone through many of the treatments, IL-2 , Yervoy ( developed severe colitis after 1 treatment) Gamma knife and WBR. She was rejected for BMS PD-1 trial due to yervoy side effects and at NIH for TIL implant when more tumors were found in small intestine and a new brain spot. She currently has tumors on both lungs adrenal gland, small intestine, Back and one spot on the brain again. Still fighting and going for radiation on one lung tumor and back this week since the lung tumor is restricting her airway. Just wondering if anyone has had this chemo with any help or success. Any words of wisdom for other treatment would be appericated.

Trust in God - Live one day at a time

Login or register to post replies.

POW's picture
Replies 8
Last reply 12/13/2013 - 2:40pm
Replies by: Anonymous, sofistef, POW, Bubbles, BrianP, awillett1991

According to the "Top News Stories for 2013" thread, the hottest thing in melanoma treatment now is the combination of ipilumumab (anti-CTLA4) + Nivolumab (anti-PD1). The Phase 1 results reported by Wolchok et al at this year's ASCO meeting showed that more than 50% of the patients treated at the best dose experienced significant (>80%) tumor shrinkage which lasted more than a year (the end of the trial).

This summer, BMS began sponsoring a Phase 3 clinical trial called "Checkmate 067" ( NCT01844505 ) where patients will get ipi or nivolumab or both. Note that there is actually no "placebo" group or "interferon only" group or anything like that. Participants will get either the best available treatment (Yervoy) or the anti-PD1 or both. A win-win for patients. Also, this trial is open to Stage III unresectable as well as Stage IV patients.

This sounds like a great trial. I know that some of you are on it already and are experiencing great effects. What puzzles me, however, is that when I read the ClinicalTrials.gov write-up, it says that the inclusion criteria require "Treatment naïve patients". Then, in the next paragraph, the exclusion criteria include: "Prior treatment with an anti-Programmed Death receptor-1 (PD-1), anti-Programmed Death-1 ligand-1 (PD-L1), anti-PD-L2, or anti-cytotoxic T lymphocyte associated antigen-4 (anti-CTLA-4) antibody".

So which is it? To get on this trial, do you have to be completely treatment naive? To me that means NO prior treatment-- no radiation, no Zelboraf, no interferon-- nothing. Or do you just have to be naive for anti-CTLA4 and anti-PD1?  

(Note that a new termininology is starting to be introduced in the field. It appears that melanoma specialists are reserving the term "immunotherapy" to mean IL-2 and interferon. These new immune-based therapies (anti-CTLA4, anti-PD1, anti-PDL1, etc) are being called "checkpoint inhibitors"-- hence the name of this clinical trial. I helps to keep up with the jargon.) 

Login or register to post replies.

doro's picture
Replies 1
Last reply 12/12/2013 - 8:25pm
Replies by: NYKaren

Hi everyone,

I read the board regularly but haven’t posted in awhile because things have been stable. Fortunately, I have some good news to share.  A little over a year ago, my father was diagnosed with melanoma and had an 10 hr surgery to remove the primary and lymph nodes (posterolateral neck dissection). Last week (one year to the day after his surgery), we had an appointment with his oncologist who shared that his most recent PET/CT was clear. So Dad has officially reached 1 year NED!  

I don’t think we had allowed ourselves to really think about the one year milestone before the meeting, but it feels really good. He was diagnosed just before Thanksgiving last year, and it was a really tough holiday season with so much uncertainty about his prognosis and traveling to get second/third opinions while he was still recovering from the surgery.

For those interested, my father started on interferon but after 3 weeks of high-dose he ended up in the hospital with a severe case of diverticulitis. It took awhile for the inflammation to subside and due to this sensitivity towards colitis, his oncologist recommended BRAF as the next mode of treatment (Dad’s primary was at the back of his head and with positive nodes on both sides of his neck we got varying diagnoses of Stage III and IV, which is why he first tried interferon but then was able to get BRAF). I know some on this board are of the opinion that it’s best to try everything else and save BRAF for when it’s really needed, but we decided to accept the doctor’s advice. He really stressed the importance of keeping Dad healthy as long as possible (and perhaps he will not recur anyway – fingers crossed!) while other new treatments, like antiPD1, are being developed. Dad started on Zel and switched to the combo after it was approved, which has been a much smoother experience for him.

Anyway, thanks everyone for always posting advice and being so supportive to each other. It's great to have a community like this to tap into. There have been a few new posters on the board with new diagnoses so maybe this update will help things seem a little less scary.

Doro

Login or register to post replies.

Pages