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.

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boot2aboot's picture
Replies 20
Last reply 8/2/2011 - 2:17pm

wanted to update everyone on what is going on

i have fast growing mel that spread to lungs and liver since i was initially diagnosed stage 3c in april...found out i am braf + for V600e...and venfenib is not offered here yet...

i am doing 2nd round of cvd (cisplatin, decarbazine and vinblastin) which is kicking the shit out of me...i get rescanned on the 15th of august and on the 16th, my records and i are going to tampa to moffitt to interview for braf/mek trial there...i did finally find and talk to an onc here in uh-oh (ohio) about yervoy and they seem to want to hold off until my status for trial...when i mean chemo is kicking the shit out of me is 

a. i think it is affecting my heart

b. definitely affecting hair loss, bowels and energy

c. i hate this shit

d. i have a 'gut ' feeling it isn't working...just instinct, but i trust my instincts more than oncs here

e.i am scared

f. i feel these oncs don't want to do anything with me (feel this lump here, or there) and go by scans and blood tests alone and don't care about side effects...

g. i don't want to research this crap very much any longer.


don't back up, don't back down

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Lisa13's picture
Replies 12
Last reply 8/1/2011 - 3:54pm

I've been thinking about all these "stat numbers" for ipi and all other drugs in clinical trials. These results are from a large group of people from different ages, health status, sex, etc.  My question is, have any of these studies been broken down (mainly in Stage 4 patients) in terms of M1a, b, c, LCD levels, health etc?  I think any of the results would be very different if they were broken down in these groups since some people with Stage 4 are healthier and have controlled disease over others.  Take for example, the TIL program at NCI. My oncologist mentioned that even though the results are good from this trial, Rosenberg is very selective in who is accepted in the program and it's mainly people who are healthy, so these people would generally do better under these circumstances, or so you would think. 

Going into an ipi trial myself, I look at all the numbers from previous trials and wonder what everyone's predicament was at the time. With IL-2 - they claim that 6% have a complete, durable response - were these people younger, healthier, less disease, etc??  As I'm fighting this beast, I dwell too much on the numbers and look for the odds that something will work and it drives me crazy!  I'm going to try very hard to go into this ipi trial and just hope for the best and not dwell too much on the numbers.

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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I know it has been a few days, but I just wanted to mention that Rocky Lovelace has left us. He was know here to some as "RockLove".

You can find his obit here:

May he rest well and fly free.


This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Jodi E's picture
Replies 2
Last reply 7/30/2011 - 11:07pm
Replies by: Jodi E, MichaelFL

If this is not appropriate to post on the bulletin board, please reply directly to my email at




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ValinMtl's picture
Replies 21
Last reply 8/4/2011 - 10:29pm

Just to let you know that I have been randomized and will be in the TIL (total body irradiation).  I have been down here doing final tests this past week which have to be done within 3 weeks of treatment, the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed..thank goodness, or I would have been off the trial.  If I hadn't been on TBI arm, I would be flying home today but now I'll be staying another week for them to do apheresis to harvest my stem cells for radiation.  So today, I'll just be a tourist in Bethesda and take a break from it all. 

I can't say enough about how blessed I am to be accepted into this trial.  THANK YOU AGAIN WARREN, a million times for the contacts.  I know it's tough..but that's how it is with melanoma and my right leg is sooo nasty now with many smaller sub-qs and some terrible weeping large ones - to be cleaned daily.  The good news is that the two masses are gone from left groin since they were used for removing the white cells...which are still being fed in the lab until they are ready for re-entry.


Live Laugh Love Nothing is worth more than this day!

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himynameiskevin's picture
Replies 14
Last reply 8/11/2011 - 1:29am

I realized not too long ago, that I haven't updated on here in some time. So here I am, there's not much to update on. Which in a way is good thing. I went back to the NIH about a month ago for my 6th follow up visit for monthly MRI and CT scans. The scans showed that there's still tumors all over my lungs and that they haven't really gotten any smaller from the previous month maybe a couple percent. If that. But the important thing is that nothing is growing, nothing new is showing and my brain is still clear. So of course, not the result we would all hope for. But good news and good result nonetheless. They've decided to let me take a two month break this time. And they're going to stop MRIing my brain since that last 10 MRIs show that it's been clear since the one nodule I had eradicated last year with the streaotactic radiation. So I go back August 30th. I don't know what is going to happen, but again, I'll cross that bridge when I get there. 

By the way, last week, July 23rd, was exactly one year since my dermatologist gave me the life changing news of "metastatic melanoma". The feelings and thoughts were indescribable, and although I hoped, I didn't imagine being where I am right now. Some IL-2, a little radiation, a bit of surgery, and some adoptive cell therapy has me feeling as physically normal as I ever have. Doing all the same activities I did before, (biking, camping, skydiving, music, swimming, reading, eating, loving, laughing, living). Even though I've still got these undesirables in my lungs, I can't really feel them. I mean sometimes I'll get a random pain. But everyone gets random pain so I don't know.  But I'm doing good for the most part. I've done more "living" in the last 8 months then I have in the last.... ..years.  I just hope I can say the same next year. I figure, if I can make it one year, well then maybe I can make it another. And then maybe do that again. And possibly again. And again... Next thing you know I'm 80. Oh that'd be nice...
We'll see.


Well that's all I've got for now. I'll keep updating time to time.
To everyone I know, and those I don't, I hope you're doing well.

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AZ_Gal's picture
Replies 14
Last reply 8/6/2011 - 7:55pm

Ok so I'm exactly one week away from my SNB and WLE and totally freaking out. Only had surgery once before and it was horrible. they told me i'd wake up with my husband next to me and i woke up sooner than planned he was there, the tube was still in my mouth, which meant i couldn't ask for him. and i was freaking out not knowing why i couldn't talk.

This time i have 3 beautiful children waiting for me at home. Thankfully my husband was able to get his FMLA put through so he could go the to surgery with me, and my mom will stay with my kiddos. but I'm still freaking out. it is all i can seem to think about. the what if crap is getting old. what if they find something? what if there is a complication? what if.... what if.... what if.... ugh!!!!


Any ideas on how i can get over the freaked out part of all of this?


Thanks guys!


Kim from Arizona

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Gene_S's picture
Replies 4
Last reply 6/25/2012 - 2:50pm


Many of you know that I am part of the Vervoy clinical trail with Vervoy (Ippi) with GM-CSF or just Vervoy and no GM-CSF. Mine is with the GM-CSF. Today was my first maintenance follow up treatment ( my fifth dosage of ippi ) ,as this is part of the trial. I am on the high dose version 10 mg/kg.  Any way back to the Subject.  My nurse today informed me that this trial closed yesterday (July 28,2011) as BMS has enough patients for their study trial. My melanoma tumors are regressing very well with the ippi and the GM-CSF treatments.

Best Wishes to all fighting this beast!

Gene, Stage 4

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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smap's picture
Replies 4
Last reply 7/30/2011 - 2:08pm

Hello All,


My mom has completed 4 infusions of yervoy and we are waiting to get the report back on her scans any day.  A couple things have changed recently and I was wondering if anyone else has experienced this after being on yervoy for a while.

1.  She is really confused:  She can't tell the difference between tylenol and clorospectic throat spray;  she can not remember any of the medicine she has been taking daily.  My mom is only 44 years old and before this took LOTS of meds for asthma and kept up with everything to a "T".  We are having to assist her with meds and remind her frequently of who she's talking to, etc.


2.  We ordered liver function blood work and it came back only slightly "off".  She is stage IV with mets in liver, spleen, lungs, rt. kidney, bones, and lymph nodes in the neck.  We have not had a scan in over 3 months (since before we started yervoy).  She's in lots of pain, with new spots popping up here and there, although they seem to be growing more slowly than usual.  We've been having to help her walk around and she doesn't make it very far until she's back in bed.


3.  Has anyone else experienced this degree of confusion and forgetfullness while on yervoy?  She is on 30mg. of morphine 3 times a day and takes more if needed in between.  But the confusion and forgetfullness is persistent, even when she hasn't had much pain med.  For example, this morning she had a 30 mg. morphine at 9 a.m. and at 1:30 p.m. she was confused about her medicine.  So, I feel like the morphine is not causing the confusion, it just knocks her out for about an hour after she takes it.  


Okay, I hope this wasn't too long or confusing!  Thanks in advance for any help!



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TracyLee's picture
Replies 7
Last reply 8/1/2011 - 7:03pm

Hi y'all,

Fourth and final ipi transfusion today. The consensus is that I'm not responding, I'm praying I'm a late response.

I must brag on my team. I was supposed to have my treatment yesterday afternoon. Hospital called and said I needed to re-schedule to 4 p.m. today. They couldn't obtain the drugs sooner.

Now, our transfusion center is open from 8 a.m. - 5 p.m. This process takes around 2.5 - 3 hours. So I knew 4 p.m. was too late to start. doctor and his assistant volunteered to stay with me until I was done. I call that caring above and beyond the call of duty.

Next week up to U of Penn to start BRAF+ expanded access trial. Prayerfully I respond to ipi/BRAF. My neck is very distorted, although I'm able to hide most of it with my hair. Plus I had fluid in my lungs and had to be drained this past Wednesday.

Praying for a comfortable, and responsive, weekend to all the warriors and caregivers, on this board.


Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Replies by: MariaH, FormerCaregiver, Anonymous

Here is a list of locations of clinical trials around the world that use the TIL
(tumour infiltrating lymphocyte) treatment process:
Interactive map:

I also did a search for adoptive cell therapy and came up with these results:
Interactive map:

I think that the above treatment approach holds a lot of promise, and is certainly well
worth considering.

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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deirgey's picture
Replies 6
Last reply 7/29/2011 - 11:30pm

Hi all,

  I know there have been a lot of questions about Yervoy lately but my after my dad had his 2nd shot, he started to get extremely bad pain in his hip.  I haven't seen anybody post anything about this.  His doctors have ruled everything out so the only explanation we have is that it could be the Yervoy causing it.  This has been going on for several weeks so far and he's had no relief.  We are still hopeful that Yervoy is working for him though! 


Deidre (Father Stage IV)

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Cynthia C's picture
Replies 3
Last reply 8/1/2011 - 7:24pm

Just a little note to let you know how much I respect you and care about you. Thank you for sharing your lives with us. The bond you share is unshakable, inseparable and unstoppable. I believe you will meet again. May God protect you and guide you on the journey yet to come, keep you warm and safe in the shelter of his arms forever.

Cynthia C

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emilypen's picture
Replies 12
Last reply 8/1/2011 - 2:30pm

Hey All,

Jason just finished his 2nd dose of IPI today.  So far no side effects.

Unfortunately we found out yesterday that he now has at least 4 brain lesions. He had a CT last Friday and they were seen on that. So Brain MRI tomorrow and then we decide between WBR or Gamma knife. Our radiation oncologist is great and he's making sure things happen fast.

Our oncologist did say that Jay's bloodwork from Wednesday shows an increase in lmphocites, which is a positive sign that his body is having a response to IPI. So fingers crossed. Our hopes are that if the radiation can take care of the brain mets then hopefully IPI will kick in before any more show up.

Luckily he is having no symptoms of brain mets, so they're hoping they caught them early.

The pregancy is going well, 10 weeks now. Due date is Feb 2012, every part of me is hoping and praying that IPI kicks the beasts butt so he's here to enjoy the baby with me.

keep fighting,



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Lisa13's picture
Replies 6
Last reply 7/29/2011 - 9:02am

In 2 weeks, I start Yervoy after failing dacarbazine. I have a couple of questions regarding ipi in general:

1. My tumours in my lungs have been growing very slowly the past 3 months. If I didn't respond to ipi, what is going to be my options if these tumours grow more while waiting for the scans? (I'm BRAf -)

2. With lung nodules, did anyone experience fluid in the lungs or other symptoms while the inflammation took place?

After I met with my onc, I realized I hadn't asked these questions and won't see him until next week. Just thought I'd reach out to anyone whose had these experiences.

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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