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 0

Has the scientific team at MRF, or any other the other MRF analogues, reviewed/analyzed/commented on the data presented by NWBio at ASCO this year regarding the DCVax phase 1 trial? Seems like they're honing in on an effective deliver method and interestingly it looks like it could be effectively used prior to PD1 treatment. 

Thanks. 

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

Artie

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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 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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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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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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Alanamaranto22's picture
Replies 32
Last reply 6/16/2015 - 11:37pm

Well, we drove a little over three hours (one way) to see the surgeon/on his cologist for my first consult hoping for some answers. I didn't really get any new information other than his main concern was my mitotic rate. He also discussed what he plans to do as far as surgery. While I liked his positive attitude, surgery is going to be three plus weeks out. If his concern was the amount of cancer cells from the pathology report and how rapidly the cells are dividing I don't understand why he's waiting so long for the surgery. When I asked this question he replied, "if I prioritized all my cancer patients, I would be working seven days a week." In addition he said that he has seem patients much better than me and he's seen patients worse than me. While he realized my concern with this, he then said, "If you want to know if you'll be here this Christmas- the answer is yes." I just felt that it was kind of a wasted eight hour trip because he couldn't provide me with any information that I didn't already know. He doesn't have all of the information he needs to know how serious it is yet.

Again, his positive attitude made me feel better but I'm not happy putting this surgery off for three to four weeks, while in the meantime the cancer cells continue to divide and invade my lymphovascular system. He said the probability is high that is has at least reached the nodes behind my knee due to the mitotic rate but he won't know anything until he gets in there and does the surgery. He did however order a PET/CT Scan which should tell alot. I'm just wondering if I should seek a melanoma specialist for a second opinion. I believe his main focus is plastic surgery, then oncology and he's a licensed dentist. I have no doubts that he's very knowledgeable and good but this is my life hanging in the balance and I think I would feel better seeing a doctor who just specializes in melanoma.

He did say it is treatable but he just doesn't have the information he needs to know if and where it has spread. Am I just being paranoid and overactive or should I try and seek a melanoma specialist. My biggest thing is- if he's so worried and concerned about the mitotic rate then why wait so long for surgery? I just don't understand that. I decided to call him after I left to again ask if three plus weeks of waiting for surgery is going to affect me, her said, "No, not really. You've had this for over two years now, waiting now isn't going to make much of a difference." I know its my fault for not getting it checked sooner, but I didn't know it was cancer. I honestly thought it was a mole. I always thought cancer was black or brown patches.

I have three main characteristics of this thing fighting against me that are of main concern to him: thickness, ulceration and mitotic rate. But he did say it was treatable. Any input would be greatly appreciated.

Sincerely,
Alana

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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
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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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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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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