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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Hi everyone Brent is on the trial Anti PD 1, at Moffitt. It will be two weeks on Tuesday and right now he is hospitalized due to dehydration and rib met pain. I have heard of the tumors becoming swollen and painful. He has a large tumor in the area of his right flank. Anyone with experience. They are talking about at nerve block so he doesn't have to take so much medication. Anyone ever had a block done and does it work?

Blessings to each of you and thanks.

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tommy90's picture
Replies 12
Last reply 11/21/2012 - 10:25pm

 I noticed this new mole, maybe 6 months ago. It's been the same. It is probably like, 1mm in size. Absolutely TINY. This pic was taken with a really high def camera.
It has these 3 little black dots in it (they are barely visible with the naked eye, you really need to straaain to see them, probably 1/3 of a milimeter? 1/4 of a mm). It hasn't grown, in my opinion.
Do you think this is cause for concern? I don't have any moles like it, but I am worried.
Time for doctor, or no big deal?

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AlisonC's picture
Replies 9
Last reply 11/21/2012 - 10:08pm

Hi all,

I got such a lot of support from this board some years back and feel bad that I am not here more often to "pay it forward".....each year it's my mantra to try and give more back.

Just stopping by to say though, that I just marked 11 years NED since my lymph node dissection and clinical trial.  I've been the uber-compliant patient from complementary treatment perspectives - meditate, juice, exercise etc etc (thank goodness even complementary treatment protocols include wine and chocolate !!) as well as all my mainstream medical stuff (excisions, clinical trials, scans etc) and so far so good.  Maybe an indolent mel but I'll never forget how it felt to walk down the corridor labelled "oncology" for my first meeting with my (wonderful) doc.

And thanks to the MRF and this board in it's various incarnations over the years.  It's been a lifesaver every bit as much as my medical team was.....(so far).

Taking nothing for granted but very pleased to have beaten the 10 year mark....

thinking of you all


Stage IIIB

NED since 2001

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Jls377's picture
Replies 5
Last reply 11/21/2012 - 3:16pm
Replies by: Janner, Gene_S, POW

I am trying to find out if it is worth trying the hypethermia treatments in combination with radiation. I have heard mixed reviews from the doctors.

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Anonymous's picture
Replies 7
Last reply 11/21/2012 - 10:42am
Replies by: alankravitz, Anonymous, JerryfromFauq, rbruce, POW

Study to Assess the Safety, Tolerability, and Pharmacokinetics of AMP-224 in Patients With Advanced Cancer: ... 884&rank=1

Contact: Margaret Fleming

Trial in 3 locations: Michigan, North Carolina, Tenn.-see link above for speicific locations & contact info.

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Anonymous's picture
Replies 11
Last reply 11/21/2012 - 10:36am
Replies by: Anonymous, Hawaii Bob, jmmm, Randy437

Hi, my family member had melanoma on his face 15 years ago probably stage 1. He had it removed and has been ok up until now. It has returned. He will have a Petscan and MRI on Friday and probably surgery shortly after. It is stage 3 now. Who are the best doctors in the St. Louis area or should we be traveling to Chicago? Thanks!

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melalisa's picture
Replies 3
Last reply 11/21/2012 - 9:50am
Replies by: Anonymous, POW, Janner

I will try to make a long story short. Back in August I had an 8 mm mole removed from my calf that turned out to be melanoma.  The original path report showed .89 breslow depth, Clarks level III, no ulceration, and it did not list a mitotic rate. My dermatologist did a WLE and said he does not recommend SLNB's for melanomas under 1mm breslow. The WLE came back all margins clear. In the meantime, I scheduled an appointment with an oncologist that specializes in melanoma at the Ohio State University for a second opinion.  He had the original lab forward my slides to his pathologist.  The original lab took over a month to forward the slides.  I finally saw him today and his pathologist shows the mitotic rate is "approximately 1/mm2". He was struggling with whether or not to do a SLNB because he usually does it if the mitotic rate is higher than 1 and does not do it if it is lower than 1 and mine is "approximately 1".  He tried to call the pathologist to get her opinion and could not reach her.  He finally decided to have me see the surgical oncologist to let him decide. They should be calling me in the next few days with my appointment date and time for that. 

I am a little shocked because I was hoping and assuming that I was just going today to get the final all clear and instead I am back into another waiting game and it appears I have gone from T1a to T1b based on that mitotic rate.  I found an article on the Skin Cancer Foundation's website that says the AJCC Melanoma Staging System recommends a SLNB for patients with "T1 melanomas and secondary features associated with increased risk for nodal micrometastases: ulceration, mitotic rate greater than or equal to 1/mm2, or Clark's level IV, especially when the primary melanoma exceeds 0.7 mm in thickness". So mine is greater than 0.7 mm in thickness and has a mitotitic rate equal to 1/mm2, which means that I should have this test.  Of course, this is just one opinion. 

On one hand, I do not want another surgery, but on the other hand I would rather be safe than sorry.  Does anyone else have any experience with this?  If I do end up having the SLNB, what is the recovery time and how soon can I expect to go back to work?  I have a desk job that does not require any manual labor or heavy lifting. 

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mama1960's picture
Replies 7
Last reply 11/21/2012 - 5:46am

Tomorrow will 7 weeks since surgery. Still sound 200 ML per day. Yesterday, the stitch holding one of the tubes pulled out, and the tube came out enough to lose vacuum in reservoir. I will be calling doctor in the morning, but just want to hear from others that this has happened to. Right now, I'm taped and strapped up.

It is what it is.

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Anonymous's picture
Replies 6
Last reply 11/21/2012 - 5:45am

Has anyone stopped taking zelboraf and switched to yervoy with good results? wondering if that would be a good idea and keep zelboraf for back up if yervoy fails.

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Sharon's picture
Replies 2
Last reply 11/20/2012 - 9:55pm
Replies by: aldakota22, Tina D

My husbands CT scan shows no sign of cancer! Praise the Lord I am so Thankful to HIM. He is still on Hydrocortisone 30mg a day he has adrenal fatigue from being on steroids during Yervoy treatment. He is leading a normal life doing all the things he loves to do. I wish you all a most wonderful Thanksgiving.

God, Family, Friends and Dogs ~ it's all that really matters!

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Has anyone heard of this or researched it?  There's info at pubmed but I can't access the full articles.  Other than that I don't see much.  Looks like the info is from 2009.


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Has anyone heard of this or researched it?  There's info at pubmed but I can't access the full articles.  Other than that I don't see much.  Looks like the info is from 2009.


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pfcresearch's picture
Replies 2
Last reply 11/20/2012 - 6:18pm
Replies by: pfcresearch, Anonymous

Good afternoon.

Please forgive the intrusion.

I am inviting people who are currently diagnosed with Stage III Melanoma to participate in a telephone interview to discuss how you feel about some of the treatments you may or may not have tried.

The interview will be conducted via telephone, at your convenience. The interview will last no more than sixty minutes; each participant will be paid an honorarium of $100 as a thank-you for your time and trouble.

I promise that this is not a sales presentation of any sort--strictly medical opinion research.

If you think you might like to participate, please call me at 212.289.0087 (of, if you prefer, please respond by email with a number where I can reach you).

I promise that this is not a sales presentation, of any sort--strictly medical opinion research. You will not be asked to try any treatments or therapies. I have been in the business of medial opinion research for more than 32 years. I can assure you that all participants will be treated with dignity and confidentiality. From our experience, participants are always pleased to join in on these studies.

Thank you, and best regards,

David Leonard
pfc Medical Opinion Research
New York, NY

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jukst9's picture
Replies 2
Last reply 11/20/2012 - 6:05pm
Replies by: jukst9, Janner

Hi -

I had a deep shave biopsy node on a mole appx 4mm wide and 2mm in length.  The report has me terrified, as do the doctors, as they feel a dermopath should re-read the slides based on the info provided, so that is scaring me.  Here is the original result:


Clarks dysplastic nevuse, compund type, inflamed.

Unusual with features of partial regression.

Margins negative for lesion.

In addition to the area of partial regression, the unusual feature is a reare melanocyte above the dermo-epidermal junction.

Because of these unusual features complete but conservative re-excision is suggested as clinically indicated.


Does this mean I have melanoma?  The surg-derm seemed concerned that there was no detailed info in the report and wants to have a dermpath re-read.  Please help!!

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Anonymous's picture
Replies 3
Last reply 11/20/2012 - 5:03pm
Replies by: Anonymous, polo, Janner

Hello My special someone has been diagnosed and has had a small surgery removing some of this melanoma cancer. I would like to know if anyone who has had similar symptoms can tell me how to communicate with my special someone. Im trying to understand how to support and what I can do to be there for.

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