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 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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tmelanio's picture
Replies 14
Last reply 6/14/2015 - 4:09pm

I was gifted an 11 one-hour series which I procrastinated watching because it promotes a holistic approach, which I assumed does not work. However, I finally relented and am now half-way through and finding much of  it highly credible although there are glaring holes. The jist of it is that our culture promotes a depleted immune system which normally kills cancer cells that occur naturally in every body. They offer natural ways to restore and strengthen your immune system which includes cuddling and singing in addition to diet. Many holistic approaches work in concert with standard procedure. Through this MPIP forum and my own online research, I have come to the same conclusion as many others with Stage III - no current standard of treatment prolongs survival. The best way to get the new Stage IV immunotherapy is to volunteer for a clinical trial. It ultimately comes to a personal decision weighing quality of life against risk. Dependent on my upcoming appointment with melanoma specialist, Dr. Sajeve Thomas, University of Florida, I am currently leaning toward quality of life and doing my utmost to improve my health and optimize my immune system.  This gifted series may help tremendously if I choose this path.

I have had my general oncologist refuse to treat me after I quesioned his assertion that a CLND (complete lymph node dissection) definitely improves survival. I also questioned his demands, not recommendations, for chemo, interferon, and radiation. He demanded that I stop reading.  At the May 29-30 American Society of Clinical Oncolgy, the results of the latest study showed no survival benefit for CLND and that it may become a thing of the past.  It is glaringly apparent that all his demands do not improve survival. It appears that most oncologists, like him,  will continue to adamantly advocate treatments that do not improve survival and that you will receive strong flak for even questioning - after all, at Stage III, they have nothing to offer from their revered chart on standard procedure.

Is anyone out there solely following a holistic approach at Stage III?

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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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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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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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ldub's picture
Replies 6
Last reply 6/12/2015 - 6:47pm

Though I know the aesthetics of wound care and best ways to minimize scar appearance are likely the least of most melanoma survivors' concerns, trying to make the most of your skin's healing from procedures is a step in recovery in my opinion.  Other than keeping your wounds/scars out of the sun, are there any tips/tricks any of you have used or learned from your doctors to promote healing and/or lessen the appearance of your scars? 

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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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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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tschmith's picture
Replies 9
Last reply 6/11/2015 - 6:20pm
Replies by: _Paul_, tschmith, Mat, Anonymous, arthurjedi007, BrianP, DZnDef

I was first diagnosed with melanoma in 1998...Stage 1A.  It recurred in February of 2013 in my brain.  I had a craniotomy and SRS.  Then it was found in my lung, then my spine and well....all over.  Radiation, spinal surgery and fusion, Yervoy (pituitary gland didn't like it), failed trial at NIH all followed.  But........After a year of Keytruda, my PET/CT scans and Brain MRI show no evidence of active malignancy!!!!  Immunotherapy gives us so much hope! 

Keep fighting!

Terrie

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Ericaloney78's picture
Replies 6
Last reply 6/11/2015 - 2:05pm

Who is here who has/knows someone with MM?

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amelanomajourney's picture
Replies 8
Last reply 6/11/2015 - 1:45pm
Replies by: gaby, amelanomajourney, Anonymous, mwconklin, Ames K

Hi there,

Just wondering if anyone else has completed the 1 month high dose 11 months low dose interferon protocol.  How long did it take you to get back to "normal" after?  Any residual side effects?  Does anyone know of women who have become pregnant post-interferon?  

Thanks!

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brewgirl68's picture
Replies 5
Last reply 6/11/2015 - 10:09am

Can someone give me any input on this trial:

https://clinicaltrials.gov/ct2/show/NCT02129075?term=melanoma&recr=Open&...

It's one of the very few that I can qualify for, but I'm not familiar with these vaccines. I'm fully resected (Feb. this year) right axilla, CLND of 15 nodes, 3-4 positive with matting. NED so far with scans next month.

I'm looking for some insight from someone with more knowledge than I regarding vaccines.

Thanks!

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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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