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
boot2aboot's picture
Replies 10
Last reply 9/4/2011 - 4:51pm


Peptides and Montanide ISA 51 VG with Escalating Doses of anti-PD-1 Antibody BMS-936558 for Patients with Unresectable Stages III/IV was recommended to me but i still can;'t figure out my HLA type...i got test results back and can't make any sense out of it...anyway, please let me know if anyone on this board is on this study and how they are doing...thank you



don't back up, don't back down

Login or register to post replies.

jmmm's picture
Replies 1
Last reply 9/4/2011 - 12:33am
Replies by: FormerCaregiver

My husband started Yervoy in May with his last dose July 5.  He had two golf ball sized tumors in May--one in his GI tract, and one near his heart.  At his 14 week scan (mid July), it showed the GI tumor gone and the tumor near his heart "dead" and half the size.  There was an area of concern in some lymphnodes in his abdomen, so we waited and rescanned last week.  The CT scan (previous scans had been PET scans, not sure if that matters or not), showed the mass in his abdomen still there, but unchanged in size.  It's in a lymphnode.  And an additional mass in a lylmphnode in his neck.  The 2 bigger tumors from May are completely gone!  We're so confused.  The Dr. thinks it's disease progression--he had a biopsy done on the neck one yesterday, but from what we've read on Yervoy, it can be a delalyed reaction.  Is it possibly that the Yervoy worked on the two tumors then stopped working and now this is new disease and the yervoy is no longer working?  Or could we wait 2 months and maybe the yervoy would work on these two tumors?  We're so confused and devastated, because we thought he was a yervoy resonder and ecstatic that it worked.  Any thoughts???  We'll get pathology report next week sometime, but we're just anxious in the meantime.  We hadn't read anything about the yervoy working so well for just a few weeks.

Login or register to post replies.

Wetterhorn's picture
Replies 10
Last reply 9/3/2011 - 11:16pm

Hi all,

Been a while since I have posted, but the nerves have driven me back to the site, partially looking for answers, partially just for a little comraderie.

So, quick update on me - I was NED for 18 months until this past Feb, when I had a lesion develop in my small intestine. Had surgery to remove it and all was looking well until complications from the surgery struck with an intestinal obstruction. 3 hospital stays later, I finally had surgery again to remove a ton of scar tissue that had formed (and was the cause of the obstruction). At the time of my 2nd hospital visit, prior to surgery, a small lesion was detected in my liver by CT.

So, instead of surgery right away, I opted to go on Ipi. I go in for my last treatment on Tuesday next week and will get scanned shortly thereafter. However, this week I started having very bad headaches. They have not gone away since they started on Monday. I am scheduled for a Brain MRI tomorrow, and obviously a bit of a nervous wreck over this fearing the worst. 

Question - Has anyone else experienced headaches while on Ipi? I'm assuming headaches are a symptom of a brain lesion, are there others I should be on the look out for? I don't get results until Tuesday.

Bummed and nervous.


Login or register to post replies.

rjcravens's picture
Replies 4
Last reply 9/3/2011 - 9:59pm

What can you guys tell me about these results? What does it mean if its Spitzoid type??


Malignant Melanoma without ulceration, at least Clark level IV.

Breslow thickness greater then 4.00mm

Mitotic rate: 3/ mm2      What does that mean????

Radial and Vertical growth are present

morphology is epitheloid........what does that mean??

Regression is absent

Microscopic satellites are absent

Neurotropism is absent

Angiolymphatic invasion is absent.

Involves deep margin

I would just like someone to tell me what this all means and be honest with me.

Login or register to post replies.

sharmon's picture
Replies 2
Last reply 9/3/2011 - 7:37pm
Replies by: washoegal, Anonymous

Hi,  Brent has been stable on the Gsk mek/ chemo combination for 18 months.  14 of those months with mek alone. When he progressed then they added Alimta. So for the  last 4 months and with chemo added he has been stable again.  The problem is the chemo is very hard on him.  He almost always lands in the hospital after his infusion.   Two months ago they reduced the chemo and there was no difference.  This past week when he went in for the infusion his blood counts were too low.  So he has to go back in two weeks to see if he can receive the chemo at an additional 25% reduction.  What he has been on is working to keep him stable.

Has anyone been through the reduction of chemo and does it get better at the lower doses?  We have another trial he can move to in October using two inhibitors. These two new inhibitors are not from GSK.  It is scary to move, but the chemo does reduce his quality of life.  And there is no way of knowing if the new combo will even work for him.

If we choose to move to the new combo then we need to not do the upcoming infusion to begin the washout  period. 

If anyone has any thoughts or has been through a similar experience I could use some input. 

Thankyou for all your help and input.  This forum has kept me sane.


Login or register to post replies.

PlantLady's picture
Replies 9
Last reply 9/3/2011 - 10:29am

My husband Ron started Yervoy in June 2011, and had a second infusion in July.   He is stage IV MM w/no primary. His Yervoy treatment was suspended in August due to the side effects.

He lost weight right along, with the worst weekly weight loss being 8 lb, and another bad week w/ a 6 lb. loss.  He had diarrhea about 6 or 7 times a day, loss of appetite, weakness, overwhelming fatigue.  He's gone from 190 to 160 lbs. He's developed drop foot, and has lost so much muscle, including loss of his voice due to muscle weakness in the vocal chords.

He was put on steroids for the diarrhea, and takes Imodium twice a day, and still has 4-6 episodes of diarrhea per day, but his appetite has returned.

It is rough seeing him get so thin and frail looking!  He hasn't had an infusion since July 13.

He had a PET scan yesterday, and we will go to the University of Michigan Wed to find out what our future holds.

Has anyone else out there on Ipi suffered from D and been put on steroids for it?

Has anybody else had muscle wasting, and what have you done for it?

The doctor says the diarrhea and weight loss could be a positive indication that he is responding to Yervoy.  We'll see in 2 days. 

CJ - Ron's wife

If you're going through hell, keep going. ~ Winston Churchill

Login or register to post replies.

rjcravens's picture
Replies 5
Last reply 9/3/2011 - 8:51am

Restarted interferon last night after having a week and couple days off. Took injection at eight, woke up at midnight with uncontrollable chills and shaking. My legs are killing me this morning and i feel like i have been run over......BUT.....i am going to remain possitive like everyone tells me and i am going to work my 6a to 6p shift today in hopes that i can make a difference in the lives of one of my patients:)

Login or register to post replies.

Shimian's picture
Replies 4
Last reply 9/3/2011 - 3:31am

My father's deep primary (4mm) on his feet was surgically removed in early 2009. We recently noticed a few  little dark new spots not far from his primary. The dermitoglist did a punch biopsy on one of the spots in Mid Aug 2011 and the result shows Melanoma InSuit (less than 1mm). We like to surgically remove those reoccured spots asap. But owing to scheduling and other complicating factors, the doctors can't perform the surgery until a few months after the biopsy. And the doctors say it is OK to leave the Melanoma Insuit for a few months as those spots are not invasive. We suspect doctors' rationale (or excuse?) and are concerned about the long lead time between biopsy date and surgery date.

Nomarlly how soon shall the surgery be performed after bad biopsy result? What is the max time surgery should be done after the biopsy? Not sure if the biopsy would stimulate the melanoma growing into more advanced stage in a few months. The doctors dismissed our concerns. But I like to check with your guys on the forum.

Appreciate if you can share with us your thoughts and experieces.


Login or register to post replies.

Rocco's picture
Replies 16
Last reply 9/2/2011 - 10:24pm

Six years ago on 8/11/05 I was diagnosed with cancer and told it was mel.  About two weeks later during my 2nd opinion appointment I was told that I was Stage IV.  

Fast forward to Aug 2011 - I received results from my quarterly (August) scans.  Clean brain MRI and clean CT. 

Loving life today!

Rocco, Stage IV since Aug 2005

Luke 1:37

Login or register to post replies.

manu000's picture
Replies 3
Last reply 9/2/2011 - 7:34pm

I had read about this technique, however, so far I have not informed because we had available and that the drug ipilimumab for BRAF mutation, but in a week these options are gone.

I wanted to ask you for information about this technique, I know that few people have the characteristics to use it. Have any of you tried?

What are the requirements?
How does the treatment work?
There is a withdrawal prior to cloning?
cloning of cells for how long?

They welcome any information and experiences you have.

Login or register to post replies.

manu000's picture
Replies 6
Last reply 9/2/2011 - 6:07pm

Hello guys,

Today we received a shocking news.
My girlfriend was not compatible with ipilimumab and decided to change therapy, and since it has the BRAF mutation to proceed with this therapy.
Today we went to the hospital to make the first pad and we were informed that the mutation is not consistent with that of BRAF, we have explained that the mutation but not the same as that required for the drug. In your opinion, could have denied the drug for BRAF lesions in the head?

Will now be subjected to strong chemotherapy that uses 4 different drugs.

I do not know what to think, has just finished the sessions of radiotherapy for head injuries and in these 2 weeks when she does not take chemotherapy feel better.

You have no idea what will have to take?
They will give us more information this week

Login or register to post replies.

ad2424's picture
Replies 6
Last reply 9/2/2011 - 10:04am

Hello all

I had VAT lung surgery in July to remove a nodule and a wide excision in August. I feel healthy except I have a tickle in my throat and a cough which brings up minor mucus, and once or twice a day I feel a dull pain in my abdomen which goes away in a second.

My doctor told me that if I have a future problem it will not manifest in something I can feel, but I would prefer to hear from those in my shoes.

Am I just nervous, or are these problem symptoms?

Thanks in advance for your reply.

Login or register to post replies.

dani_elle's picture
Replies 3
Last reply 9/2/2011 - 10:03am

Hello everyone
I'm in need of some opinions/advice for my husband.
He's currently stage 3... And he just got his 2nd set of ct results back today. His first ct scan showed a 5mm lung nodule back in may. Now 4 months later the nodule showed to have "possibly" grown 2 mm more. So he now has a 7mm lung nodule. His oncologist said he would prefer to wait it out another 3 or 4 months and compare again. I understand that sometimes these nodules are normal but for some reason we're still uneasy about the 2mm difference, even though the Dr has clearly told us they don't know if it's melanoma or not.

Our second concern was regarding interferon. My husband had decided he wanted to do the high dose interferon rather than wait and observe. So we went in to see the oncologist with that in mind. Well turns out he has to get the 5 year low dose because infusion centers were full. I don't get why that was even an option if it wasn't going to be available, but we figured something was better than nothing and the dr said it was pretty much the same thing. So I've been researching and have been getting different answers. Can you guys share some info with us regarding high vs low dose interferon!?!?


-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

Login or register to post replies.

Mickster's picture
Replies 11
Last reply 9/2/2011 - 5:54am

Hi- All,

This is my first post on this website as i have only just joined. I was diagnosed with Stage 3 Melanoma In January 2010. Since then i have had numerous PET and CAT scans which thankfully show NED. However i still have a problem getting paranoid about every little thing that i feel or see on myself. Do any of you feel this and how do you treat or work with it.


Thank You


Login or register to post replies.

Ashykay's picture
Replies 2
Last reply 9/2/2011 - 12:36am

Hi there,

Thought I'd keep updating the process with Mum. Since I last posted the hopefully immunology response being the vaccine & Yervoy, there have been a few changes (not significant). Immunology response was Yervoy + vaccine created via large biopsy of tumour on spine (+ chemo before Yervoy to get access to Yervoy).

Radiologist & oncologist are almost sure that the radiation that Mum had for 4 weeks on her spine had little or nil effect, as they alluded to earlier. The oncologist is not confident that Gleevac would work (which was his only alternative apart from seeing an immunologist)...which is what Dad and I suspected all along, as Mum is not positive for the C-kit mutation. We will revist this if need be - i.e. if immunology approach doesn't work.

Mum has seen her (stupid - it appears, no offence to generalise, that they are all completely full of themselves!!!!) orthapedic surgeon....he wants another MRI as he personally does not entirely believe that the radiation hasn't worked, and believes that an MRI may give him a better idea of whether radiation has affected inside of the tumour itself. He talked about all the risk factors involved in taking this large biopsy due to the location of Mum's tumour, but has agreed, however, that he will basically do the large biopsy if required, whcih is a relief.

Mum still needs to talk to the immunologist now....but Dad is talking about just trying Mum on chemo first along with Yervoy before we go into the vaccine/large biopsy part of things to minimise risk. They also said if Mum gets another metastasis that they could formulate the vaccine on that (at the moment, apart from a spot on her leg which was radiated, there are no other metastasis than the main tumour on the spine).

Things have been challenging for me lately. We received some news that there is also a genetic syndrome running in the family and my Nan has tested postive for it...which means that my Dad + myself could be carriers...which would affect my ability to have children naturally. They say bad news all happens at once (and in three's!)....

So that's where things are at now...will keep you updated once the next appointment comes up.

Hope you are all doing well and keeping positive... x A


Login or register to post replies.