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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hdelancey23's picture
Replies 3
Last reply 1/17/2014 - 12:31pm
Replies by: POW, Swanee, aldakota22

Hello,

I wanted to thank every member that rang a bell in my mom's name on January 9th.  It brought so much comfort to my whole family to know that my mom had so much support.  It really touched our hearts.  This is a wonderful community with great people.  It was so amazing to see people all over the world honoring my mother's struggle and fight.  Thanks so much from the bottom of my family's hearts to everyone that took part.  I can't thank you guys enough or begin to say how touching that was.

 

Thank you,

Heather-Denise Kirley's daughter

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mwcollins's picture
Replies 13
Last reply 1/20/2014 - 6:24pm

Many of you know of my husband, Kevin (kpcollins31). He posts frequently and is very actively researching this disease that has brought us all together. Well, in one weeks time he will have his PET scan to determine if the thickness in his small bowel is a met or possibly something else. I am hoping and praying with every ounce of my being that it is just a resurfacing of his diverticulitis, but the possibility remains. . . Anyhow, there is a nurse on Kevin's team that is in charge of the treatment plans, and basically the facilitator for communication. She and I had a wonderful conversation this morning. She was not sugar coating anything, but at the same time telling me that she can see Kevin being here for many years to come! Such encouragement from a medical professional! She went into details with me about Yervoy and the success that she has seen with it which had me very encouraged as well. Well, Kevin comes home and says that he did more research on Yervoy and said that the studies have shown that 46% of patients live for a whopping 1 year. His thoughts are that he wants to get into a clinical trial that can be even better than Yervoy. I can't and won't accept having my husband for just one more year. Our 4 year old will have little to no memories of his daddy, and that is just unacceptable to me. My question to all of you out there is about Yervoy. For those who have been on it, is it successful (for more than 1 year), are the side effects as bad as he thinks, is the nurse just trying to sell the drug that her hospital bought into? I am so confused! I just want this roller coaster to level out and get him healthy!

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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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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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Cfenton's picture
Replies 2
Last reply 1/22/2014 - 9:18am
Replies by: Cfenton, Janner

I was diagnosed in late Dec. 2013 with mel in situ on my scalp. It is a lesion about 2 inches up from my hairline, right in the middle where I would part my hair in the middle if I parted my hair there.  This is the site of two previous removal/biopsies in 2006 and 2007 of an "atypical mole."  It came back within this last year just like the other times, fast and dark. It is on the scar and is technically two lesions.

Now I am waiting until Jan. 31 for a consult with the skin cancer surgeon to discuss removal (excision or Mohs?).  While I am glad to talk to him first to discuss its history, location, etc.   I am, obviously, nervous that it could be up-staged... and nervous about the procedure itself in terms of healing, etc.  I am a sporting dog and horse photographer with an upcoming busy schedule and I really wanted it OVER by now!!

My last fears involve (1) this is the third time it has come back (rare since the last time they said they had clear margins after a sizeable punch biopsy) and (2) it is on my scalp/head which has a poorer prognosis than other locations - even tho they say "in situ" is curable with removal.

Any insight?

CFenton

Melanoma in Situ

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vincenl's picture
Replies 5
Last reply 1/21/2014 - 9:38am
Replies by: Anonymous, jack6020, vincenl, Janner, JerryfromFauq

 

I have a question: about 1 1/2 year ago I had a mole on my back removed. This happend in the largest academical hospital in Amsterdam. The result whas strange: my dermatologist said they where sure that it whas not a melanoma but they could not really say what it whas.

My dermatologist recommed to remove extra margins around it, to make sure it would not grow back. I,m not sure how big those extra margins are I think between 0,5 and 1 cm

It might be important to mention that before the mole or whatever whas removed I pick alot on it and tried to scab it off myself. Not a smart move I know but this might be the reason why they could not really see what it whas.

My question is does this happen more, that they could not really say what it is? and can they exclude melanoma but no say what it whas?

 

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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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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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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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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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ciphillips's picture
Replies 3
Last reply 12/18/2017 - 9:57am

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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Pink's picture
Replies 6
Last reply 1/19/2014 - 3:43pm
Replies by: Jahendry12, Pink, POW, Fen, BrianP

First brain radiation today, and the next 3 days

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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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CasieLV's picture
Replies 4
Last reply 1/19/2014 - 4:01pm

I am a stage 3 melanoma survivor and started my own small business. We sell melanoma t-shirts and give eight dollars of each shirt sold to current cancer fighters in need. We are small, and usually give out anywhere from $100-$200 per person to use on expenses not covered by insurance. Fill out our submission form at wear-awareness.com

 

Thanks and keep fighting!

 

Casie

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