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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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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Patina's picture
Replies 4
Last reply 6/13/2015 - 7:33pm

We have had more than 12 months with good news after my Mom's last treatment for 17 brain mets with gamma knife radiation.  That stopped this week and it looks like a brain met treated about 17 months ago, when she had 8 treated, either has a reoccurrence or there is a new brain met right next to it.  We don't know yet what the exact case is and her doctor's will be discussing next steps in two  different tumor boards at USC in Los Angeles this and next week. - Of course my Mom is one of those hard to treat patients who needs all the attention :)  She however thinks she is Superwoman because even with all this she feels and looks great...  She's taking it all very well and the doctors are all very positive. So, I think its just a bump in the road here, but one we need to get over ASAP.

So I am here to see if anyone has had a brain met reoccurrence and if they were able to do something other than a crainiotomy.  Right now, that is at the top of the list unless they can determine if this is a new tumor.  (They do not want to retreat the brain met with gamma knife radiation.) In particular, I am interested in finding out if anyone had a brain tumor biopsy prior to a crainiotomy or to avoid one in order to ensure that the diagnosis was in fact cancer.  - If at all possible we would like to avoid a craniotomy and we would go anywhere in the US for a second opinion or try a newer procedure if needed.  

I have found a recent publication on the use of microrecording and image-guided stereotactic biosy that was recently published that allowed the diagnosis of very small deep brain tumors with a biopsy for sampling.  Here it is: http://www.ncbi.nlm.nih.gov/pubmed/25816085

After the brain met is treated the plan is to allow her to heal a bit and then start her on Keytruda.  She had fantastic results with Yervoy and Gamma Knife Radiation for everything else.  And really the only regret we have had thus far in all of this is NOT having had all of her treatment at USC in Los Angeles.  The original gamma knife treatment at a facility in Beverly Hills included one missed tumor in the first treatment and too much "wait and see" when immediate treatment was needed.  

Anyone have any experience with this and can you let me know which doctor and facility you would recommend?

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arthurjedi007's picture
Replies 8
Last reply 6/12/2015 - 12:55pm

Saw the regular surgeon today for my t10. I've decided waiting 4 to 6 weeks for a surgery that will probably get cancelled during the angiography anyway like last year. Plus a minimum 4 week downtime to probably 9 to 12 months recovery to get back to where I'm at now. And that's all best case. There are huge risks of paralysis and infection and the rods not holding. I've got at least 30 other tumors some of which keep growing and a new one showed up. Can do ablation now and surgery at a later time if needed.

Bcause the spinal cord is so close ablation cannot get all the mass in my spinal canal.

My saint Louis doc says he will do radio frequency ablation to burn the tumor mass in the spinal canal. He says he's had better success burning instead of freezing melanoma.

My mayo doc will do cryo ablation to freeze it. That's all he does and people all over the world go just for him to do their cryo.

So I dunno should I go with my local doc and have it burned or the mayo doc and freeze it? The regular surgeon today said they are not doing anything at mayo for ablation they aren't doing in saint Louis.

Downtime is supposed to be at most 1 day with a few days light activity.

Artie

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ahren_b's picture
Replies 6
Last reply 6/10/2015 - 7:41pm
Replies by: ahren_b, Anonymous, Teochasse, Janner

Hi All,

I'm so happy to have found this resource, I've felt a little lost since receiving my diagnosis last week. I went in a year ago for a small patch of discolored skin on my neck below my right ear and was told that it was nothing to worry about (no tests were done,) a year later I have a melanoma that is "At least 3.5mm deep" the at least part is that the dermatologist scraped it off not really knowing what it was and sent it off for biopsy. The pathology report said the melanoma went through the entire sample so now I'm having surgery done to hopefully remove the rest while testing the sentinel nodes for any spread. My doctors are sharing very little information with me and although I've asked, no resources or support suggestions either. I feel like I'm twising in the wind, I don't even kow what stage it is. I keep thinking "this little tiny mole is causing all this grief? How is this possible?" My labs have all come back normal, and my surgery is scheduled for Friday; I'm told it'll be a week or so before I hear back on the node biopsy. I'm doing my best to keep it together for my family and friends and 90% of the time I'm succesful. They're all being great ... but none of us really know what to expect out of this situation. Any advice for the surgery or what to expect afterwards would be greatly appreciated.

~Ahren

 

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dmackccr's picture
Replies 15
Last reply 6/20/2015 - 6:42am

28-year-old male, excellent health other than the melanoma that was discovered and removed from shin. SLN had micrometastates. Trying to decide whether or not to have CLND. Main concern is lymphedema. After meeting with medical oncologist and learning of clinical trials, would love to participate in ipi/nevo, but understand it is only available for Stage 3b,c or 4. Unless other nodes are removed and found positive, the stage for now remains 3a.  Does anyone know if it's possible to recieve the treatment outside of a trial?

So many questions ... thanks for any answers.

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las630's picture
Replies 4
Last reply 6/11/2015 - 10:01am

I was just wondering... Does it hurt when they inject the dye into your leg for the SLN biopsy?

Also, I was curious if anyone else here is a Stage IIB and what the likelihood is of the cancer being in my lymph nodes? 

My surgery is next Friday  (my melanoma was a 3.5 cm mole that was removed from my inner leg.  It was 1.2 Breslow, non-brisk TILs, positive for ulceration, and had 2-3 mitoses per mm2)

Thank you and God Bless

Lisa

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