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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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 14
Last reply 12/24/2014 - 7:30am

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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Replies by: MariaH, gabsound, Janner


I updated my profile just 2 days ago and haven't gotten around to posting. I found the high dose phase to be not as bad as I was told it might be. Some nights w fever, chills and body aches, some nausea but for the most part felt just fine during the day. Some fatigue near the end which felt like I had lead weights on both my legs. I was quite worried about being able to work so arranged my schedule so I worked only 1/2 days. Knowing I only had to be there for 4 hours, no matter how I felt ,was psychologically good for me. My labs did change quite a bit with WBC and platelets dropping and liver enzymes up to > 6 x normal. Probably the most annoying symptom for me was the dry mouth. This was even worse if I had to take Compazine for nausea. I would wake up at night and could barely move my tongue. Needles to say, I was drinking lots of fluids.

My first subcut injection was a whole different story! I felt just awful within 4 hours of giving it and didn't recover for a full 24 hours-had to call in sick which is so hard on everyone when a full day of patients is already booked (I'm a sonographer, I do pregnancy ultrasounds). Another compounding factor was the Friday before I started my Interferon treatments 1/2 of the staff at Nevada Cancer Institue was terminated due to financial difficulties! That included my Melanoma Dr and his experienced nurse :( I went into this thinking I had an experienced team and had to deal with who was left. Luckily Dr. Samlowski and his nurse relocated to another Las Vegas Cancer Center. What a relief it was to find them!! But, that took 5 weeks. I didn't know what to do about self injections. Based on my symptoms Dr. Samlowski didn't think there was a lot to be gained for making myself miserable for the next 11 months. So I stopped. Hopefully that month will protect me!

So, not being on the medicine now for about 2-3 weeks I feel great. Went back to working full schedule. Got 2 biopsies done 1 week ago. Got a voice message from my PA to call her (the only other time she did that was to tell me about melanoma). One area was just fibrosis, but the second had a melanoma in situ. Good news, is the in situ part. She will do a wider excision in the next 2 weeks.

Now I'm wondering If I have that familial mole syndrome. I have lots of moles, freckles and of course sun damage from numerous sunburns growing up in sunny Las Vegas. I've probably had a dozen atypical moles removed before the melanoma as well as a basal cell cancer on upper back. Now I'm going to worry about my daughter who is 15. I scheduled an appointment for her and my husband for a skin check last time I went to Dermatology office,

The area that was the melanoma in situ was on the same leg as my melanoma and I showed that to numerous people-2 oncologists, the PA dermatologist, and the surgeon before I had my surgery in February. Again, no one was really impressed. The scary thing is I could point out many more moles that don't look that dissimilar to the one with the in situ! What to do about that? I did have my husband take pictures a couple months ago. I saw on Janner's page a link to some software to help you compare. Has anybody used it?

I have been following everyone's posts. Hang in there to those with current struggles and YEAH!!! to some good news!! I just love you all! Thanks for the words of encouragement, sharing your stories, the prayers and the knowledge! Just knowing you are all here is a real comfort!


Julie in Las Vegas

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jene8511's picture
Replies 16
Last reply 5/28/2011 - 11:27am

Hi Everyone..I will try to keep this as short and sweet and understandable as I can..

I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma. 

I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued.

It brings me to I really need to have this done? I feel as though they want to use me as a lab rat....take my nodes, see if anything is there..and then the course of treatment will be the same...( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me. 

I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is...if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway. 

Has anyone elected NOT to do this surgery??

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