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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Replies by: sharebear, Rita and Charles, Patina, Anonymous

Thank you to everyone that responded to my post last night - we are dazed with the news and reading that everyone is still fighting and ALIVE is a relief.  Our oncologist is the Director of Cancer hospital at Scripps Green Hospital in San Diego......but we didn't ask if he is a melanoma specialist, we wil. 

 

Does anyone have a San Diego referral for a Melanoma Specialist?

Rita

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I hope your husband is doing better. Either NIH or mda or whatever path you folks have decided.

Artie

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Ericaloney78's picture
Replies 2
Last reply 6/21/2015 - 11:08am
Replies by: Becky

Hello, my name is Erica and I have posted before about my mom have Oral Mucosal Melanoma.

I want to bring us all together. I have been posting everywhere people with melanoma are to share with them my new FB PAGE. If we all have a meeting place specifically for MM then it's easier... Please come to

https://www.facebook.com/Mucosalmelanomawarriors

thank you so much and see you there!

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Hello, my name is Erica and I have posted before about my mom have Oral Mucosal Melanoma.

I want to bring us all together. I have been posting everywhere people with melanoma are to share with them my new FB PAGE. If we all have a meeting place specifically for MM then it's easier... Please come to

https://www.facebook.com/Mucosalmelanomawarriors

thank you so much and see you there!

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Edemk's picture
Replies 2
Last reply 6/17/2015 - 8:49pm
Replies by: Edemk, Janner

Hi all- a few days ago I received a call from my dermatologist who had three lesions on my breasts biopsied . One on the upper part of the left Breast and two on the underneath part of the Breast. He removed them after noticing that they had grew from the last time I visited him which was 3 years ago. The results he said were melanoma in situ. He said not to worry but referred me to a surgeon at NyU who he recommended should remove them by margins to be safe that everything is gone. I'm very concerned about this, I have a newborn daughter and very scared that bc I have not been to see the dermatologist, they have grown and spread. How can I be sure that it's in situ only??

 

Also my other question is once I remove all 3 by this surgeon, what is the likely hood that it comes back? Can I have Breast cancer bc of this? I apologize if I am asking ridiculous questions but as of right now this is all the information I have. The dermatologist assured me that the pathology reports were done by the president of the cancer board and he takes her word on everything that he sends over bc of her success rate in determining outcomes. 

 

Please se let me know what you all think. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/23/2015 - 2:14am
Replies by: Anonymous

I have been in a clinical trial for for 2 years in Washington D.C..I'm about to begin my third year.  I have just been reassigned to Dr. Geoffrey Gibney who was recently at the Moffitt Cancer Research Center in Tampa, Florida.  I would appreciate any information about your experiences with Dr. Moffitt.  Thank you.

.

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He has had the biopsy, and the PET scan. The PET showed lymph nodes "lit up" closer to the heart area. The original nodule that started us on this path is mid lobe.  We met the oncologist yesterday, and the surgeon today. Still no defined answers.......the surgeon is taking it to the tumor board to see if removing the mid lobe and all the lymph nodes is the answer....

 

He also spoke of not doing a "local approach" of removing the mid lobe if the lymph nodes are too affected - needed to get a systemic approach.  We now wait again, and learn more on Monday on the plan they suggest for us. It's crazy,, my husband feels fine! he experiences some shortness of breath at times, and his voice gets gravely. BUT the surgeon pointed out that the nodes next to the vocal chords didn't "light up" so almost to say that Charles' gravely voice might be a manifestation of too much internet searching on symptoms. I know that it not the case becuse even before he was ever biopsied his changing voice Irritated the shit out of me......I kept telling him to clear his throat.

 

So I guess what am I asking?  We are still so early in the journey.....but the elephant in the room is how long will he live if diagnosed with stage 4 melanoma in lung and in lymph nodes?  No one has a crystal ball.....but.....should we run away to an island and spend time creating memories if life expectancy stats are dismal?? Just thinking out loud.......any feedback to us is great.

Rita

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Nell's picture
Replies 11
Last reply 6/23/2015 - 7:20pm

I am nervous to begin this targeted therapy after reading all the side effects that are possible, but I will begin taking the pills next week. Any advice..good or bad ..any encouraging words....or warnings....personal experiences ...will be so appreciated.  Stage 4 melanoma is really scary, but I am heartened by new treatments that are coming..and by the support of this forum . Thank you for your help. This is a place I know I can trust.          Nell

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Replies by: DZnDef, Janner

At my initial diagnosis I was already Stage IV.  No obvious primary was found on my skin or in my eyes, nose, throat or genitals.  So my status is "unknown primary".  This does not mean that I don't still have the primary on my body, it just isn't an obvious one.  I have easily over a hundred moles, every which one could be described as "unusual" for another person, but are usual for me.  I suspect the primary may still be there somewhere.

I could go to the dermatologist and have him just start systematically removing and testing moles, but even if we do find it that way, is there any medical benefit to finding the primary after you are Stage IV?  Is the answer any different if your mets are inoperable?

Thanks in advance for your input.

Maggie

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Keepingyourchinup's picture
Replies 7
Last reply 6/18/2015 - 8:55pm

Please forgive me if this is not the place to put this but I need to say a few things and no one else seems to understand me today. So I have melanoma stage IIIA. I had a PET Scan today and it is negative; yeah, I think! I have limited options for treatment because of the stage I am, which is peglyated interferon, I almost wanted to say forget the treatment today after my results of the PET scan but then was reminded that melanoma can return and that I am at a more advanced stage, Talk about a little bit of a downer. So I searched for statistics, yes I know they are all individual...; and could really find none that say when or if it will return. I know this is a personal decision and I had originally decided to proceed with treatment until I could no longer handle it or if it changed my quality of life. I guess I am still on that path since my reminder of a more advanced stage. This post really has no meaning other than I really just want to scream right now. Ever have those feelings when others try to understand but really cant or don't? I sound like I am having a pity party, and sort of am, so do forgive the whining.... as I really just needed to vent, 

 

Kathy 

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/17/2015 - 6:25pm
Replies by: arthurjedi007, BrianP, Janner, mskin314, Anonymous

Hello - 

Ever since my father was diagnosed with melanoma our lives have been forever changed - I am here looking for help from people that have been through this before. 

What are the recommended treatment options for a StageIIIC patient? In my fathers case -  The tumor originated on his upper back and spread to auxiliary lymph nodes. 9 of 14 aux lymph nodes removed had melanoma - Follow up PET scan done a few weeks after surgery showed no SUV uptakes - except for where the WLE & lymph nodes were recently removed max SUV was 3.7.  Brain MRI was done - still waiting on results. 

One doctor is recommending  prophylactic radiation, but I have read that this might not be the best way to go - as it does not extend the life span, and in my fathers case - may exacerbate lymphedema? Is radiation even effective against melanoma? What are the most promising treatment options for StageIIIC?

Thank you all for your time & support.

   

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/15/2015 - 2:14pm
Replies by: Happy_girl, Janner

Does anyone know if getting the new Melanoma GEP test is a reliable test.  Supposedly its used in thin melanomas and puts at low risk 3 percent or high risk 70 percent of recurrence.  I see a lot of data to support this but at the same time it's an expensive test and I don't know if it's worth it.  

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Bubbles's picture
Replies 2
Last reply 6/17/2015 - 9:35pm
Replies by: Bubbles, tmelanio

With the recent number of fairly new (and some not so new) posters categorized as Stage III and all the sentinel node discussions/decisions....I thought of you all when I came across this abstract when going through the last bits of intel out of ASCO.  For what it's worth:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

I remember trying to think about what my life would hold (or not) and what I should do when I was in your shoes in 2003.  I wish you well.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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joshuaprichard's picture
Replies 14
Last reply 6/18/2015 - 12:13am

Courtney was diagnosed with Stage IV Metastatic Malignant Melanoma.  You can follow her journey here:

www.caringbridge.org

Search: Courtney Turpack

We are looking for support and overall advice.  She begins Immunotherapy treatment this week and is very scared.  In addition, Courtney noticed a lack of resources regarding meeting others who have a similar diagnosis.  She is looking to build a foundation that puts together retreats for patients, caregivers, and anyone who has been affected by this disease.  At this point, her family and I recognize she needs more than just what we have to offer.  We need experienced people who have lived through this, to offer help, advice and most of all encouragement.  Courtney's lively spirit has began to diminish.  She isn't able to exercise at the moment and we believe that if she could "give back" that it would help give her something to look forward to; therefore she wants to start organizing retreats for people in the community.  We think it's a great idea.  If you would like to be part of it and/or would help donate to her cause, please do so here:

www.gofundme.com/trcw5dk

Only one dollar would make a difference to help build something that could be so rewarding for so many!  If you have any encouraging words or advice for us, we would love to hear from you!

Thank you to this wonderful site and I am so glad we found it!

Josh

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Ace226's picture
Replies 1
Last reply 6/14/2015 - 8:13am
Replies by: arthurjedi007

Has anyone had experience with Keytruda working (destroying tumors) and then later having one mass return? (All while still on keytruda every 3 wks). If so, did your oncologist let you or your loved one stay on keytruda? I ask because my father had good results for the first 6 months (disappearance of all tumors) to now find out he has a mass on his small bowel and needs a resection. His onc doc said he will now have to stop keytruda because it isn't working. However, I don't agree. It did work - it worked with 3+ masses but just not this one. Does anyone have experience with this and did you stay on keytruda or did they switch you to something else? He has tried Yervoy prior for 6 months before keytruda. 

my second question is why do you need to be off immunotherapy prior to surgery? My dad's surgeon said it would be best for him to be off immunotherapy for while before surgery but he didn't explain why? Can someone explain? My dad is hoping to have abdominal surgery this week but that would only be 1 month off immunotherapy. 

Any thoughts or experience with similar situations would be very much appreciated!

 

 

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