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
sharmon's picture
Replies 2
Last reply 10/19/2012 - 11:40pm

Brent has been on the GSK trial for 32 months and has had some real pain issures lately.  CT showed dark spots in the ribs and spine near where he has a large tumor in his side that has been there and has been stable.  It is still stable but the bones are now involved.  Either mets or fractures.  MRI is being ordered to find out.  Meanwhile he saw his Dr. at MDA and we found out he can stay on the trial since there is no growth.  Pain is a real bummer and his quality of life is being effected.  Taking pills for pain around the clock keeps it in check but when they start to wear off he really hurts. 

We know he can get into a MERCK anti pd 1 trial if he qualifies.  He needs blood work and a biopsy and a brain mri.  One of the things I need to know more about is the idea that the pd -L1 might need to be present for the pd-1 to work.

MDA is givng us a few days to decide if he wants to drop the GSK trial while we make up our minds. If he does drop out of the trial there is no going back on,  This trial has kept him well for 32 monthss.

The fear of the unknown is unbearable.  I have had nightmares and can't sleep.  To go or not to go.   One thought is that the GSK drug is soon to be FDA approved and if th Anti pd 1 fails and there is still time he can try that again., 

I know melanoma is now being called by some as a manageable disease.  He has been on Leukine. IPI carbo/taxol. bio chemo, mek, mek alimta..

We told ourselves we would stay on a treatment  until it stopped working or something better came along. 

If anyone has any ideas or suggestion or experience I could use them.

Praying for an answer and for all of you.



Login or register to post replies.

ladyinnh's picture
Replies 13
Last reply 10/19/2012 - 11:11pm

Good afternoon all, I'm hoping I can get some advice from you.  I was diagnosed with Stage 3b melanoma in October 2009 and just completed a total of 10 months of Interferon.

My son is 17 months old now. Two separate oncologists have given me different advice regarding trying to get pregnant again. One said wait 3-5 years to try and one said 6 months to a year.  I'm 35 and my husband is 38.  I really want to try to have another child as soon as its safe but that beign said there is much talk that women can have reoccurences of melanoma when pregnant becuase your estrogen levels rise so much.

I've been told its a huge risk and I've been told it may never reoccur.  Even my oncologists dont' seem to have any clear information about how at risk I am of getting this again.

I could really use some advice, referrals to doctors I could call re: this and information.

Thanks all in advance!

One day at a time!

Login or register to post replies.

Replies by: Jim M.

Anybody else see the press release yesterday from Bristol-Myers Squibb about four and five year survival rates of Yervoy patients in several different trials? (see, select news, and then press releases.) Here are the headline bullets:

  • Long-Term Follow Up From Phase 3 Study (024) Demonstrated That 19.0 Percent of Treatment-Naïve Patients Who Received YERVOY at Investigational Dose of 10 mg/kg Plus Dacarbazine (DTIC) Were Alive at Four Years vs. 9.6 Percent of Patients Treated with DTIC Alone
  • Few New Immune-Related Adverse Events Occurred Beyond Two Years of Treatment in Study 024
  • Five-Year Follow Up from Three Exploratory Phase 2 Trials Add to Growing Body of Survival Data for YERVOY in Metastatic Melanoma
  • In Both Analyses, Updated Survival Rates Remained Relatively Stable Over Time                                                                                                                                                                                                                                             

But it was the details of that reports that had some remarkable statistics. Here's one taken out of context from the results of 3 phase II trials (there were varying dosages of Yervoy among other things) so read the article:

“In treatment-naïve patients, the five-year estimated survival rates ranged from 38% to 49%, which was unchanged from the four-year rates.”

I don't try and interpret clinical study data because there are so many variables it hard for me to make a decisive conclusions(and I'm a scientist) but these claims sure sounds good.

I was diagnosed with stage IV melanoma about a year ago. After I finished my Yervoy infusions (3 mg/kg) six months ago, I have had reductions or stable tumors in all three subsequent scans (Thank You God!). But I'm having trouble finding current information on how long this this might continue. I know we all are different but would like to hear about longtime (greater than a year) survivors.



Login or register to post replies.

JerryfromFauq's picture
Replies 7
Last reply 10/19/2012 - 9:48pm
Replies by: Jim M., swissfarm7, islandbreeze, Anonymous
I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

amandamini's picture
Replies 6
Last reply 10/19/2012 - 8:05pm
Replies by: amandamini, Anonymous, mel123, POW, Janner, dellriol

Hi all,


I was diagnosed with stage 2 Melanoma Oct. 2012.   I gave birth to a beautiful and heathy baby girl in May of this year.  During this pregnancy my husband saw a mole on my back and asked me how long I have had it.  I looked in the mirror and thought huh?  I don't recall seeing it before.  But maybe I just never noticed it. After all it is on my back. That was it.   Strange how unconcerned I was.  I was not educated on skin cancer at all!  I finally decided to make an appointment to get it checked out.  The Derm did the biopsy and a week later got the diagnoses.  So here I am...  Terrified for myself and my family.

 Tomorrow I am going into surgery to have the SNB and the excision. This week they did a Lymphoscintogram and located the sentinal node or I should say nodes as it went to 2 places.  Both my arm pits.  My first question is how is it staged when they do not know if it has spread?  When the Derm.  called me he said that it was 1.00mm which is stage 2.  Everything I have read indicates to me that it really has not been staged yet.  Also he referred me to a plastic surgeon.  Should I go to an oncologist?  Also diet-  I have read a lot about vegan diets and how it can help your body fight cancer.  I would love to hear any and all thoughts on this.

I would love to hear your stories as well!


Login or register to post replies.

Sorry to keep asking questions about interferon, but this is the particular part of the maze in which we find ourselves just now.

Hans (stage 3B) began the high-dose treatment yesterday.  So he's only two days in, granted.  And I know that each person reacts differently.  But wow!  I must say, I'm kinda surprised at how little it's affected him thus far.  His treatment is late afternoon, and both days he had some chills after.  He came home and lay on the couch, drank some tea, and within a few hours was good to go.  Went out the barn for 1+ hour at 10 pm or so, as usual.  Got up early today and was out there working as per the norm until we left for his next infusion.  Really?!  Is it too good to be true?  Or are they doing the hydration and anti-nausea meds and forgetting to give the actual drug? ;-)  Seriously, I'm curious (as always!) to hear how it played out for others.  Is it more of an accumulative effect, or...?



Keep on keeping on.

Login or register to post replies.

B-Trent's picture
Replies 4
Last reply 10/18/2012 - 10:51pm
Replies by: Swanee, Linny, michelleg

Has anyone had side effects with the Mag3 vaccine?

Monday was the first time I've taken the Mage3 vaccine without a week of HIL-2.  I developed flu like symptoms with a temperature of up to 101.

What has been your experience with the Mage3 vaccine?

Login or register to post replies.

scrapps's picture
Replies 1
Last reply 10/18/2012 - 8:43pm
Replies by: gabsound

I am currrently Stage 3a and underwent a full Lymph node dissection 19 days ago. I have a follow-up with my surgeion to hopefully remove my drains and my initial consult wwith the medical oncologisst  to  discuss where to  go from here. My dissection went well overall  with another 17 nodes taken and  all negative. So at this time all they found was my primary and micrometastases in a single  axillary node. I wass wwondering if anyone had suggestions of specific questions I should make sure to ask when I meet with the oncologist later today.  I feel like treatment options wwill be discussed but ultimately it  wwill be left up  to  me and I want to make ass educated  a decision as possible.


35 y/o Stage 3a

Login or register to post replies.

sandywebb's picture
Replies 5
Last reply 10/18/2012 - 2:45pm
Replies by: Roxy1453, kylez, Anonymous

Waiting for next scan in early November for Lung Met, Showed up 2 months ago for my 5 year NED from stage 3b. If it is "real" what are my options? Have been clear for 5 years since being a 3b NED since 2007. Did the Interferon for the Complete Course and am dealing with Lymphedema on the lower right side and am having a very,very hard time coping with the possible realization that "it" is back. What is the typical approach to this?

Login or register to post replies.

sharmon's picture
Replies 4
Last reply 10/18/2012 - 11:37am
Replies by: Anonymous, Amanda, Bubbles

Hi, this is Brents wife Sharon, after 32 months on Gsk Mek and Alimta alone than in combo he has mets to his ribs and vertabra. (He is Braf negative). We thought it was a kidney stone at first.  Test showed different.  He is being treated at MD Anderson with Dr. Falchook but we live in Tampa.  To ease the pain I made an appointment for a consult with Dr. Weber to get a referral for a radiation therapist to ease the pain.  We don't go to MDA until late next week.  While in  Dr. Weber's  office he talked to us about the Merck Anti-pd 1 trial that he has and after some discussion about needing a brain MRI and tissue sample we were put on a waiting list that he says is about 3 weeks out.  We need to meet with Falchook next week to go over the chance of him being removed from the GSK trial because of progression on Thursday. 

2 months ago signed a consent for Foundation Medicine to evaluate his tumor tissue for a know mutation.  He has been negative for all that MDA had tests for.  It may uncover something that there is a targeted  therapy for, and maybe not.  The  Mek targeted theraphy has worked for him in the past as a single agent, maybe with it combined with something else he can get stable again.

I know we need to make this decision on medical information not emotion.  (Quote from Charlie). 

Any thoughts from any of the warriors or experience is needed.  I am not thinking straight at the moment and something someone might add would help me get a bit more centered.




Login or register to post replies.

Souxie_q's picture
Replies 6
Last reply 10/17/2012 - 6:32pm

I just want to thank y'all for posting about your experiences with Zelboraf. My sisters story starts with a melanoma mole removed when she was 18. At age 39 she was diagnosed with metastatic melanoma, stage 3. At the time she lived in Houston and was able to go to MD Anderson for the start of her interferon treatment. But has since moved to PA. She, after complaining of stomach pain, was diagnosed with gastritis in August 2012. She lost 13 pounds in a month and lived with this pain. In mid September she went back to the ER and when they did a CT it showed mets in her liver, pancreas and lungs. She is 45 and has a 13 yr old daughter and is a single mom.
She went home and awaited Yervoy to get approved, in the meantime her cancer grew and she was hospitalized again oct 7th. I flew in to be with her and have slept in the hospital for 5 nights now. It's unbelievable to me how much this has progressed already.
Good news today is that she is BRAF + and instead of Yervoy they will be giving her zelboraf. I'm SO hopeful that she will do well on this treatment. We just lost our mom to a pulmonary embolism in Jan and as a family, have dealt with so much. I just want to wish all of you well, fighters, survivors, family members. And thank you for sharing your stories, it makes the uncertainty a little more bearable.

Login or register to post replies.

DonnaK's picture
Replies 19
Last reply 10/17/2012 - 5:47pm

Hi. My husband was diagnosed with Melanoma (2.55mm thickness, non-ulcerated) on his chest  in July.  A follow-up WLE and SNB revealed 4 of 6 microscopic tumors in his lymph nodes, tracking to both his left and right armpit. He has since completed two completion node dissections and enrolled in the interferon vs. ipi trial.  We were really hoping he would get chosen for the ipilumimab trial but unfortunately, he lost the lottery and is scheduled to begin Interferon on Monday.  I want to make sure I'm doing to right thing by encouraging him to stay in the trial.  I've looked at all the Interferon data and I'm unimpressed, but I also can't imagine doing nothing.  He is 36 years old, and a father of a 2 year old and one more on the way. 

I've read through past posts which have been incredibly helpful, but I'd love to hear any words of encouragement as to why he should stay in Interferon side of the trial.  Also, his doctors are implanting a port on Monday since he isn't supposed to get blood drawn from either arm.  We're curious how standard this practice is and how difficult it will be to endure. 

Finally, are there any examples out there where people have been prescribed ipilumimab off-label for resectable Stage 3C Melanoma?  We've consulted with five doctors so far and I haven't found one willing to do it, but...

Thanks in advance!


Login or register to post replies.

Phil S's picture
Replies 16
Last reply 10/17/2012 - 2:51pm

We got good news this week, Phil's scans on Monday showed that his brain MRI is fine, his lung tumors are stable, and his stomach cavity tumors are shrinking slowly. These scans were almost 5 months after Phil received his T cells during the TIL trial in Houston. So we are cautiously pleased with these results and now get another three months with no treatment before his next scans to enjoy our kids and a much anticipated trip to Orlando. Phil's blood counts have rebounded nicely and he will most likely out walk us all at the Disney parks.

Just to encourage any stage 4 people who need a story of hope, Phil needed an emergency craniotomy a year ago, had WBR, six rounds of biochemo, and TIL, so from September 2011 to June 2012 he had non stop treatment! But, the great thing about TIL is once it's done you just hope the immune system takes over! Phil has been feeling well and hasn't had any treatment since the second round of high dose IL2 (part of the TIL trial) the first week of June. So, to us having the whole summer and now the whole Fall without treatment and with stable disease is an answer to our prayers. So to all the warriors in the battle, keep fighting, you just never know with this disease. And, to all the warriors who are looking down on us, your courage has inspired us and we have not forgotten you! God bless, Valerie (Phil's wife)

Login or register to post replies.

It's been a VERY long time since I've been here.  Losing Eric was one of the hardest things I've ever been through in my entire life.  It's only by the grace of God that I made it through the first year, but I'm here.  Today I updated the Cancer Resource List on my blog for patients who are going through treatment.  I hope you find this helpful.

Login or register to post replies.