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: 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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Anonymous's picture
Anonymous
Replies 6
Last reply 6/15/2015 - 7:38pm

Hello - I'm wondering how quickly the results are available from a sentinal lymph node biopsy. My dermatologist said they have results right away, but onco surgeon said it would take 1.5 weeks.  Others experiences?

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/13/2015 - 11:35am
Replies by: mdoh, Janner

Can anyone clarify for me the definition of ulceration?  My mole protruded above the skin and was bleeding.  However, my doc said that it was not ulcerated because ulceration comes from below.  It is 2.58 mm deep with meitotic rate of 3. 

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Bubbles's picture
Replies 14
Last reply 6/15/2015 - 3:43pm

Recently many folks have posed questions about foods, activities, or alternate treatments that may help rid their bodies of melanoma and/or prevent its recurrence.  I do NOT have all the answers.  In melanoma world, thankfully, we learn something new everyday.   However, I have been perusing the literature for all things melanoma for the past 4 years.  So, if you are interested...a recent post (in the 4th paragraph) contains links to real live, research and the results when folks looked at:  Strawberry juice, Eggplant, potatoes, and tomatoes, Red wine, Coffee (twice), Doxycycline, Curcumin (twice), Cimetidine, NSAID's, Shitake mushrooms, Vitamin D, Snake venom, Beta blockers, Sophora root, Sandalwood and even exercise...

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/alternative-treatment-for-melanoma.html

I guess the only recommendations I can make are these:

Don't let fear and slick talk from a charlatan cause you to miss out on treatments that can help you.

Melanoma sucks...decisions are hard....there is no perfect answer or cure.

And finally, have 4 cups of coffee in the morning, do some jumping jacks, have a a stir-fry with shitakes and eggplant for lunch, and a spicy curry with red wine and strawberries for desert in the evening!!!  (Just kidding....kinda.  You'll see when you read the reports!)

I wish you all my best.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Replies by: LaurenE, Anonymous, AshleyS, dentholla

My dad is now 4 years in since his diagnosis with melanoma, 1 year since we found mets, which were surgically resected. There are now more mets (of course) on his last scan, so we are taking the step for systemic treatment.

The data for the combined nivolumab and ipilimumab is very compelling, however concerning for toxicity. We have an appointment to meet with an oncologist who is overseeing the expanded access to this and will likely get started in the next few weeks unless we find another option we want to try in the meantime.

I was wondering if anyone had any experience (either yourself or a family member) of actually doing both of these drugs together. I would love to hear about any success stories, as well as the failures, however I am more wondering about the personal experience of having this treatment. I want to help support my dad as much as possible and father's day may be a good time to load him up with blankets, playlists, games, mints what have you for when he is having these infusions - do they give you chills or hot flashes? burn entering your veins? metallic taste in mouth? etc

I would deeply appreciate any insight!

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Anonymous's picture
Anonymous
Replies 15
Last reply 6/19/2015 - 11:55am

Hello all - I had a large mole on my outer leg removed on Tuesday and just learned it is a melanoma and it was 2.58mm deep.  Dermatologist was very somber and said there is high likelyhood that it has spread to lymph nodes and beyond.  Is recommending a SNB and a PET scan.  I'm dreading a stage IV diagnosis.  Not sure if I should be seeking out hospitals with clinical trials available or if it is too soon.  This is a complete shock and I'm feeling quite unprepared.  Any advice would be welcome.

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/15/2015 - 11:23pm
Replies by: Anonymous, Ed Williams, DZnDef, SunFriend, amelanomajourney

I'm a T1b. (.7mm 2mitosis/mm) it's thought that my lesion may be related to a decade of enbrel use. Have since switched to stelara for psoriatic arthritis. 

I wasn't offered SLNB tho I now hear from my derm I probably should have been? Seeing a surgeon to revisit that soon, but having already ha WLE I know it's iffy. 

I was just wondering what supplements or other lifestyle efforts I can make to reduce the chance of spread/recurrence?

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Anonymous's picture
Replies 1
Last reply 6/22/2015 - 9:27pm
Replies by: Anonymous

Has anyone experienced having low oxygen levels and confusion while be treated with Interferon? My Mother was started on interferon three weeks ago, and the Sunday prior to her forth week of the IV infusion phase she became very confused and her oxygen saturations were in the low 80's on room air. They have completed a chest xray and CT scan which all came back negative. She was started on steroids and provided home O2. Anyone else have this experience and if so what was the resolution?

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/12/2015 - 1:41pm
Replies by: Julie in SoCal, ConstructionCM, Anonymous

Hey Julie,

I have not seen you post lately so I was wondering how you are doing on Keytruda.Have you had scans yet and were the results great? I hope that you are doing well.

Anon

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