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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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2014 - 2:20pm

I recently had my 2nd melanoma removed.  The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear.  My official diagnosis statis is "Stage 1B (T2a NO MO) 

I wanted to find out what the standard protocol is for both imaging tests (PET, etc.) as well as treatment protocols others are using. 

I fully appreciate that, at this point, I am considered early stage...and I am profoundly thankful for that.  But given that I have now had "2" primaries, I would sleep better if I were given a PET scan or something to put my mind at ease!

Thoughts....experiences???

Tricia Chappell - Chesapeake, VA

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WendyD.'s picture
Replies 0

I am still waiting for the derm to reread my original biopsy for the melanoma. 

In God I Trustsmiley!

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ciphillips's picture
Replies 2
Last reply 1/15/2014 - 3:46pm
Replies by: Phil S, JerryfromFauq

My wife had vaginal mucosal melanoma.  Treated with surgery and 3 rounds of Bio-Chemo at MD Anderson.  It now appears she may have a met to the lung.  Genetically her tumor is NRAS mutation, WT for BRAF.

I am looking for alternatives for treatment under the following circumstances:  the tumor is not surgically recetible or if it is for adjuvant treatment. 

I would also be interested in Clinical Trials.

thank you

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Replies by: Anonymous, Cooper, POW, pd1gal

Hello all,

I represent Cancer Commons, a nonprofit partner of the MRF. We aim to give patients the information they need to make the best possible treatment decisions with their care team. As part of our efforts, we're co-hosting a special program for patients and advocates at the 2014 Personalized Medicine World Conference in Silicon Valley, CA, Jan 27-28.

If you are curious about how things like molecular testing and targeted therapy are changing the treatment option landscape for patients, please join us! You will be able to learn about and discuss these and other personalized medicine topics with other patients, advocates, doctors and researchers.

Registration is available at a generously discounted fee ($100 down from $1500). Learn more about the program, topics and speakers here: http://2014sv.pmwcintl.com/patients1.php

Happy to answer any questions!

Sarah - Associate Editor at Cancer Commons

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BrianP's picture
Replies 3
Last reply 1/15/2014 - 4:46pm
Replies by: Anonymous, JerryfromFauq, arthurjedi007

This is a video from Jun 13 that I stumbled upon tonight.  I hadn't seen it posted on here before and thought it was a pretty good overview of immunotherapy by Dr. Wolchok.

http://www.youtube.com/watch?v=o89zA1TDBJA

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Replies by: Janner

Ok, First I will say that my last two biopsy came back as just moles. Praise The Lord!!!!! :) But my question is concerning my WLE for the melanoma I had. The Derm had said something about the margins may be inadequate and I might have Mohs Surgery. Well Dr. Chung looked at the report for the WLE and didn't see any reason for further surgery. But as I look at my path report it doesn't seem to have been the appropriate margins cut out. I will tell what the report says and my question is should I get a second opinion? I want everything done right, including correct margins.

Diagnosis:

Skin,Chest,Excision

Negative for residual melanocytic lesion

Comments: After discussion with the patient, the site of this biopsy is the previous site where a malignant melanoma lesion was removed. Immunostains S100 and melan A red fail to demonstrate a melanocytic lesion in this case. This case was received and reviewed by dermatopathologists Jaweed Ansari MD.

 

Gross Description:

The specimen is recieved in formalin in a container labeled (my name), chest and consists of an ellipse of skin measuring 1.9 x 0.4cm with 0.4 cm underlying tissue. Prior to sectioning, the margins are inked blue and one tip is additionally inked orange. The specimen is serially sectioned and entirely submitted.

Thanks for the input! :)

In God I Trustsmiley!

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Charlie S's picture
Replies 7
Last reply 1/15/2014 - 6:59pm

Yeah, yeah, I know I am a pain in the butt.......................but; after many years here and with the latest "re-launch" of this website, , it is quite apparent that there are major security flaws, so be carefull.

Today, I received six e-mails,all of which came from "tor" sites via MRF.

For those unfamiliar with  a "tor" browser , the object is to disguise and misdirect.

Given the makeup of the new MRF Board,  it is dissapointing this would happen.

Whats up Tim?

If you like, I have a packet capture of the trail if you like.

Regardless, this site has been compromised and I do not like it.

Charlie S

 

 

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amelanotic eric's picture
Replies 2
Last reply 1/15/2014 - 7:58pm
Replies by: Anonymous, Richard_K

I was diagnosed as Stage 2B nodular melanoma on Halloween (no treats for me - only tricks!) and have completed the whilwind of PET scans, surgery, etc.  I am a 53 year-old male living in northern Connecticut and was hoping to find an in-person support group where I could meet others on this same journey.  I was kinda hoping to find a cancer buddy that I could sit down and have a cup of coffee with.  Do such groups exist?       

Thanks, 

Eric

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/15/2014 - 8:47pm
Replies by: Kimmer

any recommendations for the paleo diet?

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JoshF's picture
Replies 10
Last reply 1/15/2014 - 10:55pm

Finished yervoy Dec 9... Scan on December 20th showed no progression and doc said she wouldn't even be concerned about lung nodule as it was a shadow and the obvious prior knowledge of tumor. Felt it was very encouraging news. So had a nice Christmas break with kids and went into hospital Jan 6 to start HD IL-2. Did 11 bags... Couldn't get last one in Friday...couldn't get urine output. 

Anyway, feeling a bit better but wow feel like I've been run over by train. 27lbs of fluid retention... Scary. My dad took pic on day 1 and last day...wow. Hardest thing is not being able to sleep well. If I could I think I'd feel 1000% better. Cold feet, get chills... General flu like feeling. Not looking forward to next week in terms if dealing with side effects but looking forward to getting on with it. I wish complete response rate was better for patients.... This drug is high price to pay.

 

Josh

Let's work for better treatments....for a cure!!!!

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momof4boys's picture
Replies 1
Last reply 1/16/2014 - 7:11am
Replies by: gostan

Can anyone share what their symptoms were with colitis besides the diarrhea. Was it clearly obvious that you had it? I just finished my 4th dose of ipi and have had diarrhea for three days. Woke up this morning not feeling well. Waiting for a call back from onc. Thanks

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triciaches's picture
Replies 10
Last reply 1/16/2014 - 8:05am
Replies by: Colleen66, BrianP, JerryfromFauq, Nadia, Anonymous, Mat, Gene_S
  • I recently had my 2nd melanoma removed. The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear. My official diagnosis statis is "Stage 1b" (T2a NO MO)

    My November LDH level was 219 with the standard range of 125 - 250 U/L. Since this is on the high side of the range, I am a little concerned.  I have not had any CT/MRI or PET scans done to date.

    Does anyone else have any insight on LDH levels??

Tricia Chappell - Chesapeake, VA

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/16/2014 - 9:09am
Replies by: Tina D, Ty, BrianP

Hi,    (third attempt to get posted past the scam filter!)

My wife is 5 months into the Ipi/nivo trial and has yet to see a positive response... though has had some of the nastier side effects.   Has anyone been on this trial and seen a response this late into the treatments?

Thanks, 

Ty

Ty

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Phil S's picture
Replies 3
Last reply 1/16/2014 - 9:50am
Replies by: Tim--MRF, Swanee, POW

Wow, so excited to see that post history is back!!  Thanks, Tim for bringing this feature back to to board!  Valerie (Phil's wife)

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JerryfromFauq's picture
Replies 2
Last reply 1/16/2014 - 11:18am
Replies by: MeNDave, BrianP

Here is a post I just left on Amy's Facrbook bage for The Busby Family.  Dennis reminds me so much of our Dear Nancy fighting for their beloved spouse.----------------- I want to thank  one of the most gracious melanoma warriors ever met for the help she is still giving to melanoma warriors even after they have been told to go home, that nothing more can be done on this earth for them.  Dennis your precious wife is still so much loved and her earthly presence so badly missed.  Her help to others has not disappeared nor ended though.  Another warrior was told 6 weeks ago that his battle was eover, to go home.  His family was very despondent.  When Nancy told me the results of the Onc visit that day at MDA, I sent her information from mine and Amy's phonecons, the emails from Amy and copies of her posts on the MPIP about her Lepto them treatments .  We urged them to get in to see Dr Papa.  She fought her way in and Dr Papa said "Let's try!" :  Here is todays post after that rough month of treatment that our Dear Amy endured and passed the data on to us.  ------------------------------------------------------------------------------------ """""""  PET is still Clean !!!! NO Lepto in Spine. Mets are stable. Lepto has stopped growing in brain !!!!!! Could not have been a better report. Hope this gives someone HOPE !!! Prause the Lord on High. All Glory to God and thanks to Dr Papa. Said they had nevere seen anyone do as well with treatments as Wayne. Whoop whop. Cruise here we come !!!!!!!------------------------------------------------------------------------------------------------------------------------         -angel

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

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