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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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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MaryBeth and Jeff's picture
Replies 12
Last reply 7/30/2011 - 4:41pm

What an emotional day today. Some of you may have read my previous post where my husbands medical oncologist felt he was a Yervoy non-responder......Well... we met with the Neurosurgeon today to go over the findings of yesterday's MRI. Of the 19 brain lesions most are gone and the remaining few are barely visible!!  The neurosurgeon was amazed to say the least. He said he actually expected to see many more new lesions as he felt the brain mets were very aggressive (an increase from 5 lesions to 19 total in 2 1/2 weeks)  and he has never seen 19 lesions respond like that. He attributes this to the Yervoy! (per neuro he hasnt seen Gamma produce such amazing results on so many lesions)Granted my husband is still fighting the ever increasing tumors, nodules and sub q's on his neck, back, legs, arms etc. which seem to have appeared rather rapidly after his 3rd Yervoy treatment. (He finished his 4th and final Yervoy treatment on July 15th). His neuro does not feel these are immune responses...but hey, let him stick to his gamma knife expertise...because the medical onc was mistaken in determining my husband was a Yervoy non responder. I give all the Glory to God and continue to pray for all of the fellow warriors who are fighting this insidious disease. 

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cfw9186's picture
Replies 7
Last reply 7/30/2011 - 3:10pm



Posted a few seconds ago
Things have gotten pretty rough here lately:  had bad sinus infection since the 6th of July, FINAALLLLLLY got some antibiotics about the 13, took for 5 days still felt like crap, so week, could not eve  get out of bed since the 6th because of head aches, the after the antibiotics, still was so week , then saw spin wheels again called dr.b., had an MRI and found our more tumors, plus my blood showed low on hormones, thyroid, so he put me steroids for the swelling in my brain and thyroid  for my metabolism.     

.dr b doesn't  seemed very encouraged that my IPI is working although I am holding out for weeks 12-14.  I find it weird that this has all started after the 4 and final infusion.

He suggests a chemo in pill for my brain may be the next best step..........Have appointments with both Drs. tomorrow,,,,,,,,,,still trying to remain hopefully.

Hanging on the the edge of a mustard seed.  :)  Love to all  Kitty

Get a skin check at least once a year by a dermatologist and stay out of the sun.

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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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sharmon's picture
Replies 5
Last reply 7/30/2011 - 9:51am

Hi, Brent has cellutitus in his right leg from lymphedemia conplications.  A few days ago he found a lump that was tender.  The doctor has put him on antibiotics but they don't seem to be working.  I need some help.  I know we shouldn't wait and we see the doctor on Friday.  I know this is serious and could use some feedback.  Thanks

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Steve0805's picture
Replies 23
Last reply 7/30/2011 - 2:28am

So im new. my names Steve, im in good health far as i can tell. I noticed a lump about 6 months ago. I had no kind of insurance and little help getting to get it checked out. When i did about 3 months later they just felt it and said it didnt seem like cancer and we can cut it out if you want. so i spent the next 3 months trying to get Insurance. The lump grew to the size of a baseball before it was removed a week and a half ago. I went in for my post op today and the they told me they found Melanoma. I have no visible signs of problem that i can see on my skin. Im freaked out of course, dont want to tell my family yet, and everytime i look at my kids i have the hardest time not breaking down, not sure what im asking or what im here for. just scared and figure other people here might know what its like and where things go from here. waiting for a call for my appointment to get a PET/CT whole body scan whatever that is. should be in the next few days or so.


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MariaH's picture
Replies 9
Last reply 7/30/2011 - 1:06am

We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study.  He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say.  He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda.  His oncologist, Dr. Khushalani,  totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots - one a node by his collar bone, and one a possible sub-q near his original primary.  Both were too small to see on a CT scan.  His brain MRI was clean, and nuclear stress test and breathing tests were good.  On a side note, he was B-RAF wild type - so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.

Hopefully we will know by next week what his decision will be for treatment.  Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised.  Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.

Thanks to all of you have replied over the last few weeks - you have led us in the right direction.

Best wishes to all,

Maria & Dave

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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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Replies by: KristinaW, Goddard71

I am looking for volunteers for the Morristown Miles for Melanoma event scheduled for September 25th in Morristown, NK.

We are looking for volunteers to work on our planning committee as well as volunteers for the day of the event.  

If anyone is interested in volunteering, please e-mail me at



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Manubuzzi's picture
Replies 8
Last reply 7/29/2011 - 10:30am


Greetings to all 
It has been approximately 2 months since I have written, although I have been keeping an eye on this site to see how everyone is doing.  We have really had 2 really great months, and I have been taking advantage of this time to be with my mother and enjoy her company.  After the last surgery that my mother had to undergo, to take out part of her skull that was infected, everything got better!
My mom is great!  Always in high spirits and so so strong, she's walking :) for short periods, but walking all the same!  She's always positive with a lot of faith that everything will turn out well.  She is completely lucid and has had no side effects of 4 seperate sessions of Temodar.  This last few months has really renewed our hope!
Now, the next step is to start her on IPI.  Here in Argentina, this is not so simple- the drug hasn't been approved, and only a handful of doctors are allowed to administer it.  Also, she has to do several things in order to be able to even attempt to have the treatment.  We have a lot of hope for this new treatment.  We know that it's going to be an uphill battle, but to see her like this, so strong, it's almost impossible to imagine a negative outcome.  We are from a small town, far from the city of Buenos Aires.  And to do this treatment means moving to Buenos Aires for 6 months, not an easy thing to do.  But we are grateful for the chance... 
I want to thank all of you and tell how things were going.
I always want to write in different posts.. but my english is not the best (this was written with my girlfriend's help) and I do not want any misunderstanding caused by my bad english, especially when we are talking about difficult issues.
I continue praying for all of you who are fighting this terrible disease. All the best to you
Patient son

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Dynasysman's picture
Replies 10
Last reply 7/29/2011 - 10:28am
Replies by: Dynasysman, NYKaren, lhaley, TracyLee, Anonymous

Fierce Pharma led its daily coverage of pharmaceutical activity today with a story about BMS and Yervoy.  The story began:


Market watchers expected Bristol-Myers Squibb's ($BMY) new cancer drug to be big, but this fast? The company's second-quarter sales left Wall Street estimates in the dust and prompted an increase in profit forecasts, largely thanks to unexpectedly strong sales of the very-recently-approved Yervoy.

Indeed, the melanoma treatment just won the FDA nod in March, and it has already brought in $95 million, Reuters reports. "To come up with nearly $100 million in sales right out of the gate is fantastic," Credit Agricole Securities analyst David Maris, who had projected Yervoy sales of $20 million, told the news service. 

I suspect some will react by criticizing the high price of Yervoy therapy, but think about it this way:  Yervoy's strong start will motivate other BioPharma manufacturers to increase their investments in melanoma drug development, which is good news for all of us.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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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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Anonymous's picture
Replies 10
Last reply 7/29/2011 - 2:01am

I have had disagreements with some people using the Anon id, but I do support it's be used.  It has many good usge to.  Many times ladies hve come on withmelnome problems in the genitals and ben leary of giving out much info.  This usage has benefited many.  Most of them have learned that it is safe to talk about intimate locations more openly then they ever imagined,  They r not alone, but they might not have posted if the Anon was not available at the start.  I know a couple that have rubbed some others such that some would be negative just because that person posted. 

Some discussions of sex for melanoma patientshave arisen.  I even posted as Anon in those discusions.  Those posts were not negative nor "dirty", because sex is not a dirty word.  It is a vital part of most peoples life and needs to be openly discussed here at times.

So while I do disagree with the recent negative Anon comments, I do support its ontinuation and am very proud of the way Jill and Eric was supported for the way they hve conducted themselves in this whole affair and for being the fine people they are.  I suspect the supportive comments overwrote the negative feelings that were automtically felt by Jill.


Not really Anon.  Just trying to get your attntion here. 


I'm me, not a statistic. Praying to not be one for years yet.

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AZ_Gal's picture
Replies 27
Last reply 7/28/2011 - 11:50pm

Can anyone tell me if there is a stage that goes along with clarks level? or how i find it out.

I was diagnosed with melanoma on my upper left shoulder blade in April of 2011.  I had had it removed by my PCP two weeks before. when the results came back I was told the margins were clear and that i just needed to see a dermatologist every 6 months from here on out. But now I'm seeing surgeons for more biopsies and to have MORE skin taken from around my original incision. WHY THE HECK DO I NEED MORE TAKEN IF THE MARGINS ARE CLEAR?

They told me today when I had my consult with the surgeon that not only do i need more skin taken from the original site but that i have to have my lymph nodes biopsied in my neck and/or armpit. Hmmmmmm. That sounds like a total joy!....NOT!

They also told me that my spot was .99mm thick boarderline for hardcore treatment. so they are playing it safe since I'm so young and going the more hardcore route.

The Dr. says I grow Melanoma. It doesn't just start as a mole like most people.....and just grow a spot of melanoma. How awesome! I'm a petree (sp?) dish for this crap! WTH?!?!

Any input would be great! THX!


Morenci, AZ

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Kim K's picture
Replies 16
Last reply 7/28/2011 - 11:38pm

Had scans yesterday, all is clear.  Next check in 6 mos.  I don't know why my onc also wants me to see the surgical onc next time, nothing to cut on - lol.  Whatevers.... perhaps it is just to cheer the surgical onc since some of us will be the one's extending the survival tail of stage IV, and I happen to be one of them *fingers crossed along with everything else*

VATS - 2/10

High dose IL-2 - 23 bags 5-6/10

NED oficially 7/10

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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