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 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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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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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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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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AnitaLoree's picture
Replies 2
Last reply 6/11/2015 - 8:02am
Replies by: Bubbles, arthurjedi007

Has anyone out there had any surgery while taking Keytruda? My husband's resected malig mel, up in his spinal cord at C1-2, is stable, on Keytruda X 9 mo., no mets. His only SEs from Keytruda are itching & fatigue. So his orthopedist, in consult with his Onc doc, is suggesting arthroscopic repair to MRI defined meniscal tears which are causing him significant pain in his left knee and difficulty walking.  He uses hiking poles for stability & can't walk far at one time.  His knees were fine, never a problem, before surgery 10/13 but the left knee was painful to flex after surgery.  As he recovered, it began improving. His knee began to really bother him, would give out, about a month after starting Keytruda (11 months after surgery) & it's steadily gotten worse. I understand immunotherapy can cause increased pain at sites that have already some irritation/inflammation, as say someone who has coexisting arthritis.  We're with Kaiser.

Appreciate any wisdom, red flags, questions we should ask, advice from your experience with surgery/Keytruda.  Thanks in advance.  Have gotten so many helpful tips/links from everyone's posts..A.L.

 

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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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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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tomw65's picture
Replies 1
Last reply 6/9/2015 - 9:04pm
Replies by: Rocco

If Ipi treatments are successful whats the best one can expect for it to last? I have just finished my last of four infusions.

Tom

hazel43green

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/10/2015 - 12:24pm
Replies by: Anonymous, Janner

I wonder what is the recurrence rate for a stage 1a melanoma. I have read that the recurrence in thin melanoma is low and the chances of spread local, regional and distance is low, but how low is it? Exist any statistics in thin melanomas grouped by breslow depth ranges or clark level? How  low risk is with a Breslow 0.63 mm, clark III mitosis < 1 no ulceration and primary on top trunk ? What are the chances of a recurrence? I have read some people with stage 1 turns to stage 3 or 4 some years after diagnosis.

Thanks!!!

M.

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blackcat4766's picture
Replies 3
Last reply 6/10/2015 - 12:02pm

Greetings,

im waiting for Yervoy to enter the UAE. I was wondering what kind of side effects does it give you?

Blackcat4766

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