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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24hourmommy's picture
Replies 5
Last reply 4/10/2012 - 3:11pm

 I want to apologize if I don't use the correct terms or phrases, I'm new and would like to know if anyone has had endured the side effects of Ipi.

My husband was diagnosed stage !V metastatic melanoma in 4/2011. The pet scans show it's spread to his liver, spleen, lymph nodes, etc. We were told 4-6 months.

The good news is his MRI was clear and he is BRAF positve.

He had a small "mole" removed 10 years ago and would return for blood work every 6 months and was cleared and told it was all removed. In all honesty, I believed it was fine because he went to his dermatologist regularly and seemed on top of it. I can't give more details about the surgery 10 years ago (size of mole or diagnosis) because the records were archived and we don't have those reports. I am working on getting them.

He had his first Yervoy treatment with no side effects. He had his 2nd treatment  three weeks ;ater. Now.  he has been unable to leave the house for the past two weeks due to the diarrhea. He is taking lomodil and steroid for it but had to go in the hospital overnight for fluids last week. Since we came home Thursday, the diarrhea is still bad and he is so drained.

We are scheduled for the third treatment this Thursday but his doctor said he can't recieve it if we can't reduce the predisone and get the bowels under control.

He had such a positive outlook after he recieved his treatments and I am terrified that he will be devastated if he can't recieve #3.

We live outside of Charlotte, NC and his doctors are  Charlotte Oncology. We recieved a second opinion from Blumenthal at Carolinas Medical center that said he is on the right path.


We have children-- 7, 10 and 13 year olds and been married for 15 years. I lost my Dad two years ago (only 60) to lung cancer. This has been overwhelming and I'm very grateful to find this site.

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Dana R.'s picture
Replies 13
Last reply 9/20/2012 - 3:30pm

This month marked 10 years since my husband got the news that his scans were clear. In Jan of 2001, lung mets turned up in both lungs. He received a biochemo regimen that was being studied at the time at MDA by Dr Legha. (high dose IL-2 plus interferon, cisplatin, vinblastine, and dacarbazine) Then a year of just immunotherapy. Our oncologist says he is "cured" because the data is demonstrating that people who live at least 5 years after high dose IL-2 continue to be free of disease at 10 years, and further out, too, I guess. So grateful for the guys in the labs doing the research!

Dana R

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FormerCaregiver's picture
Replies 9
Last reply 6/5/2011 - 12:47am

Here is my updated list of some of the most promising treatment options (depending on
eligibility criteria). Although I have tried to list them in order of efficacy, I am
really just making some educated guesses here.

1. Adoptive cell therapy (also called TIL treatment). It looks like this offers the
greatest chance of achieving durable remission in some cases.

2. GM-CSF (Leukine) together surgery when needed. Some long-term melanoma warriors are
using this approach.

3. Yervoy (ipilimumab)
4. BRAF and MEK inhibitors
5. IL-2
6. Other treatments such as chemo and biochemo.

The biggest problem that we face in trying to decide on treatments is a lack of reliable,
unbiased, and up to date information.

The other main thing to keep in mind is the medical term "overall survival". As far as I
know, only adoptive cell therapy and Yervoy have been shown to improve this in a
statistically significant amount of patients.

I look forward to your comment on the above.

Best wishes

Frank from Australia

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awg's picture
Replies 3
Last reply 5/31/2011 - 12:28am
Replies by: aynw, awg, jimjoeb


I underwent a superficial lymph node dissection (left groin) for management of Stage IIIa melanoma on May 18th. The operation went very well and thankfully the pathology came back negative. I had a total of 4 node that were removed as part of the sentential mapping 2 superficial on the RT and 2 on LT one superficial and one deep. Only the superficial node on the LT was positive.

Prior to my questions let me say that I have spoken with my surgeon and was instructed to rest until my appointment on Tue unless my condition changes.

I would like to hear from some people who have had this procedure/

My question and reason for this post is to gage the recovery time of this operation.

1. I have two drains still in place. The output of the drains is slowing down but I am noticing increased drainage from around the primary site of the drains. Is this normal?

2. As I was informed by my surgeon the location of the incision makes it difficult to heal, femoral triangle to a few inched on the abdomen (through the waistline). I am following directions and spending most of my time reclined to limit pressure on the incision. What is normal heal time for an incision in this area if all goes well and I avoid infection?

3. I seem to have some mild swelling (no redness or heat) in my upper thigh but due to the numbness of my thigh it is difficult to gage. Is this common? When does it begin to go away?

Any and all thought and comments greatly appreciated.

Thank you,


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deirgey's picture
Replies 4
Last reply 5/28/2011 - 11:23pm

As some of you may know, my father has stage IV Melanoma. His first treatment at Arizona Cancer Center was Avastine and Abraxane and he started that some time in February. It was clearing up most of the cancer cells in his lungs and spine but the cancer in his liver was still growing so they pulled him from that. He started his 1st dose of IPI about 5 weeks ago and started having diarrhea 2 weeks ago. They did not give him his second dose of IPI and instead proceeded with a colonoscopy and found he had colitis. His doctor deemed this as a successful response to IPI and that he was 1 of 2% of people who responded so quickly to the drug!! I was surprised he was so quick to say it was successful without a scan to follow, however he is the doctor and not me :) Nevertheless, we are VERY excited with this news, however we are trying to be cautiously optimistic. :)

Anybody else had a quick response to IPI?? YAY for IPI!!!

Deidre Grief (Father Stage IV)

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boot2aboot's picture
Replies 17
Last reply 5/30/2011 - 7:00pm

is it JUST me or does choosing a therapy like playing darts on a dart get a certain number of darts and then try for a bulls-eye...and all the while your body gets...torn down....

i am starting biochemo june 2 as adjuvant therapy and i am still questioning my decision...but clinical trials for adjuvant therapy sucks too...and delayed...i really feel frustrated with researchers right now...i almost wish they could try their own cocktails...i met some of those...researchers... and my impression is EGO MANIAC...i left one and told him he could 'play with his own life' cause he wasn't getting mine for his gold star....

it seems to me all those 'brilliant scientific types' could come up with a way to test the TUMOR instead of the PERSON for chemicals or vaccines that would be effective for the type of Melanoma...genetically speaking...

it just seems to make sense 

i am very frustrated and saddened by the comments on this many people throwing the darts but no and i am blaming ego driven researchers for this....



don't back up, don't back down

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nicoli's picture
Replies 6
Last reply 5/31/2011 - 1:15pm
Replies by: nicoli, Sherron, lhaley, FormerCaregiver, Drew N, Anonymous

I am a little depressed and troubled by the events of this week. Been lurking and posting on this site for about 1 year now and have not seen another period of time when so many have left us or have called on hospice.

This is sad.

Nicki , Sta        ,

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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kylez's picture
Replies 7
Last reply 5/30/2011 - 3:17pm

After 6 months of stability my brain mets came back this week. Going in for more resection next week.

In terms of clinical trials, it's frustrating that brain mets remain a forbidding zone where research and trials fear to tread. As far as systematic approaches, my body is on it's own. No body mets sounded great, but also has precluded me from any trials that might have somehow helped with cranial mets too.

I don't know if anybody looks at melanoma subtypes for brain mets. I guess if there's nothing to do, there's no reason to ask that question.

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MaryMary73's picture
Replies 5
Last reply 5/29/2011 - 12:04am

A good friend of mine has a weird mole on her right calf, just below the knee and just by looking at it, it is bigger than 6mm in diameter. It's light brown but has some blotchiness darker brown in it too (no black or red though). It almost looks like a scar. Out of the ABCDE's of melanoma, it has the ABCD characteristics but it's not as ugly as my superficial spreading melanoma was. Anyhow, I saw it for the first time today but she says she has had it for years and it hasn't changed. I asked her if she has showed it to her dermatologist and she said that he told her it was nothing to worry about. I asked her if it has ever bled. She said yes, every time she shaves her legs. She said that she did not tell her dermatologist about the bleeding. She is VERY light skinned, pale milky white to be exact. I told her that she should get it removed because only a biopsy would give her the all-clear.

Am I being paranoid or annoying? sad

The only real wisdom is knowing you know nothing -Socrates

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Anonymous's picture
Replies 4
Last reply 5/29/2011 - 7:37pm
Replies by: ValinMtl, lhaley, Anonymous

Hi Val,

Thinking about you and hope IPI is working for you. Please post and let us know how you're doin.

Postive thoughts & hugs are going out to you!


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Jewel's picture
Replies 12
Last reply 5/29/2011 - 9:07pm

Thanks to all of you ahead of time for taking the time to reply.

My husband was diagnosed in Nov 2010 with Stage 3 melanoma. While he has remained NED since I wake up everyday with the fear that today is going to be the day it is so frustrating because you have so few choices at this stage.  Just need some encouragement.




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Rendergirl's picture
Replies 7
Last reply 5/30/2011 - 2:26pm

My mom is worried about all the scans I'm getting. PET/CT, MRI, X-rays, etc... I told her the doctors wouldn't let me have all those scans if they didnt think it was needed. She's scared of them causing cancer... I already have I told her I'm sure they weigh the benefits against the risks and at this point I need the scans.

Anyone know how many scans are a safe limit?

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Gene_S's picture
Replies 1
Last reply 5/31/2011 - 2:21am
Replies by: Nebr78
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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We got the awful news today that Don does not qualify for the GSK BRAF/MEK trial we had been waiting weeks with baited breath for. Even though he turned out to be positive for the mutation, the cancer has spread so rapidly that his liver function is not high enough to meet qualifications.

Doctor Lawrence admitted Don to the hospital on Wednesday to better manage his pain as well as get his testing done for the trial (we had been in the emergency room that morning because Don was having a new bout of pain in his lower right ribcage area that wasn't being controlled by his pain medications) looks like he'll be staying for at least a little while longer. The doctor is now recommending chemotherapy as a last ditch effort to slow down the wild growth and spread to attempt to get his liver function under better control with an eye to possibly get him into the Compassionate Use PLX4032 trial which will be opening in this area soon. He wants Don to start the Chemo Sunday morning. We will both be speaking with Dr. Lawrence in the morning about all the details.

I could *really* use some prayers/support/hope right now. Having a hard time tonight being able to absorb yet *another* bout of extraordinary bad luck.

Thanks to you all. You really are a Godsend!

Michelle, wife of Don, Stage IV 

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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gtown's picture
Replies 4
Last reply 5/29/2011 - 1:43pm

Hey what's up,

Just got the results of my sentinel node biopsy and everything came back clear, no evidence of cancer in the lymph nodes. Man I'm psyched, what a long week it was to wait. My head was going a mile a minute all week long and this was a hell of a way to start summer! WHEW! I was figuring with the mitotic rate so high( 7) it had to have gotten into the lymph nodes! WOW, I had just signed up for a 1/2 marathon about two weeks before the initial diagnosis and now I can't wait to train again Sunday. I want to thank everyone for their help in the last couple weeks, it can get real tough when you're by yourself   (I'm single) and you guys always took time to give me some feedback.

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