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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ecc26's picture
Replies 0

Just wanted to say how nice it's been to see so many good news and happy stories the last day or so. I had my local follow-up this afternoon and also recieved a bit of good news: the tumor I had removed last week was completely necrotic- no active tumor at all. Probably explains (at least in part) why I never had any symptoms. 

Still don't have the final biopsy and there's still a few questions, but given that bit of info, I'm a bit hopeful that I may not have to return for radiation to the surgical site or, perhaps even the other lesions that were seen on the MRI prior to surgery in other locations. A few more questions still to be answered and hopefully I'll get more answers (and maybe a plan) tomorrow as my local (but very diligent) oncologist tracks down imaging, path reports, etc. 

Thrilled that tomorrow morning is my last dose of my steroid taper, and looking forward to resuming PD-1 as soon as they'll let me, and pretty happy that the tumor was actually dead- perhaps there's hope for PD-1 in patients with brain mets after all! We'll see what other info I get and what kind of plan gets proposed, but in the mean time, it really is good to see that others are doing well and getting some good results with their therapies. I think it's good for everyone's morale, at least it is for mine!

Keep fighting everyone- it's worth it and congratulations on all the good news! You all deserve it (and a little bit of a break)!

 

-Eva

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tbmorgan's picture
Replies 2
Last reply 9/23/2014 - 9:31pm
Replies by: Marianne quinn, Anonymous

My son TJ was born on August 28, 2013 and diagnosed with congenital malignant melanoma in his first four weeks of life.  He was born with a large mass on the back of his brain that was resected and biopsied at 10 days old by a pediatric nuerosurgeon who saved his life.  At two months the tumor returned and grew to slight larger size and was removed again.  At same time multiple small lesions started appearing on his arms, legs, hands, feet, back.  These were biopsied and confirmed as melanoma.

My son has been on Temozolomide orally 100 mg a day for 5 days a month for 9 months and Everolimus 2 mg a day every day for 3 months now.

The tumor in his brain did not show up again on scans but came back at 6 months and is now stable at about the size of a penny.  The skin bumps seem to be just slowly growing but scare me.

His current treatment is a wait and see approach and it scares me very badly.  I asked my doctor about what we should be doing and he really did not have a long term plan.  I told him that I try to research and look at google once every few weeks and he told me good, because he has a lot of patients and that he was not a melanoma expert and was not able to do that level of research.

I know the doctor team here is good and saved his life, but I cannot accept that answer, I started searching and found this site so easily, I was surprised they had not recommended this site to me.  Then I saw they had a family conference just two weeks ago and I missed it.  I was so sad.

TJ is an amazing child, he is strong, loving, and smart.  He has no developmental issues from the surgery, and is walking, dancing, and smiling all the time.

What do I do?

I need help.  I need to find the Doctors that can confirm my sons treatment is the best available or recommend something else.  I want a plan that I can live with.........

 

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Ginger8888's picture
Replies 8
Last reply 9/23/2014 - 8:50pm

Ok finally home from my visit and it's great news!! The spots in my lungs are GONE and the one in my neck went from 1.5 centimeters to 8 millimeters..All i can say is God is good and thank you to everyone for the prayers and positive thoughts..Scans again in 3 months to check to makes sure it's still working...Thank you Yervoy!! Stage 3 C and hopefully NED soon..

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sweetaugust's picture
Replies 8
Last reply 9/23/2014 - 8:36pm

Hi Everyone,

I just wanted to let you know that I scanned last week and found out that all is well and I am still very healthy.  My disease is down to only that one bad node that had been the size of a peach, and is now the size of my thumbnail.  If you read my history, you'll see that my melanoma at the time of diagnosis (Oct 1, 2012 when I was 38 years old) was in several lymph nodes, all across my body, and I had a mass on my liver.   I have been on Merck's MK-3475 since October 31, 2012 (almost 2 years) and I couldn't be happier or feel luckier to be so healthy.

Just trying to pass on the good news and I hope it helps those that are struggling.

Much health and happiness to you all,

Laurie

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JerryfromFauq's picture
Replies 2
Last reply 9/23/2014 - 5:36pm
Replies by: tbmorgan, Tim--MRF

Malignant Melanoma in Teenagers and Young Adults; Kolandijan N, Wei C, Burke A, Bedikian A; Journal of Pediatric Hematology/Oncology (Aug 2014)

BACKGROUND: This study compares the natural history and treatment outcomes of cutaneous melanoma in teenagers and young adults to determine if exclusion of teenagers from investigative trials is justified.

PATIENTS AND METHODS: This is a chart review of patients between the ages of 13 and 40 years treated at The University of Texas MD Anderson Cancer Center for melanoma. Data related to the natural history and treatment outcomes were collected. Statistical tools were used to compare characteristics between teenagers and young adults. Cox proportional hazard models were utilized to examine the association between age group and overall survival.

RESULTS: Of the 476 patients, 109 were teenagers and 367 were young adults. Both groups had comparable disease stage, pathology, and rates of metastasis. Initial disease stage and pathology significantly influenced survival. Sixty-six of 452 patients with skin melanoma developed metastasis. Teenagers survived better than young adults from diagnosis of the skin primary and after development of systemic metastasis. Teenagers tolerated and benefited from interleukin-2-based systemic therapy and targeted therapies as well as the young adults.

CONCLUSIONS: Because of the similarities in natural history and treatment outcomes between teenage and young adult patients, it is recommended that teenage patients be officially enrolled on adult melanoma therapeutic trials.
 

 

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 19
Last reply 9/23/2014 - 5:30pm
Replies by: Anonymous, Janner, hbecker, Teochasse

Hi...just found this wonderful site. My brother-in-law recently had a lesion removed from his arm, and when path report came back, derm said it was metastatic melanoma that didn't orginate in the skin. He indicated that the situation is very serious.

My BIL had eye exam today, negative for ocular melanoma. Blood test two days ago, with no results back yet for possible liver compromise. PET scan scheduled for Monday.

Question: If you're told you have a non-skin melanoma that also isn't ocular, do you have mucosal melanoma? And is it automatically stage four if it orginated inside the body, then spread to the skin?

BIL's general practioner, unbelievably, said he "didn't expect the tests to show anything." Huh? Is it possible to have metastatic melanoma and not have a PET detect it?

Wow, is this frightening. Thanks for any insight, and glad to have found you.

 

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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I'm wondering how people are doing with their adrenal insufficiency over the longer term.  Have you had to change your steroid dosages over time.  If you have had recurrence has it necessitated a change in dosage.  Have you had symptoms of adrenal insufficiency without a known cause (ie illness)?

There doesn't seem much in the literature about long term maintenance of Ipi induced adrenal insufficiency. I have only found articles that describe the phenomenon.   My husband participated in the adjuvant Ipi (3mg/kg) trial and developed hypophysitis a year ago following the 4th induction dose. 

The general attitude seems to be take some medication and all will be well.  I'm wondering if that is the general experience.

Kate

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Anonymous's picture
Replies 2
Last reply 9/23/2014 - 1:39pm
Replies by: Patina, Janner

I noticed a couple weeks ago a small weird shaped mark on a toe of mine. I recently got a promotion also at work and have been working many more hours ( at least 10-12 a day ) in a very phsyical job. At first i thought it could be a bruise but after it did not go away i decided to get it looked at. I saw my primary and they took pictures and sent them to a dermatolgist who recommended a biosopy and possible full removal. But they only said "suspicous" lesion. They never said Melonoma but from what i have read that is not diagnoised untill after testing after removal thou. I had a consolt recently with a podiatrist and she said she was going to remove the whole thing and that it would be minor surgery. I would be put off work for up to two months because it's on the bottom of my feet it is harder to heal and i would be wearing a boot and useing crutches. If you have read all of this thank you, My problem is the timeing is horrible. I was suppose to be getting married by the end of the year and was just approved for a home loan. I had to jump through many hoops to get the loan and my fiance and I wanted to get a home before we get married. They do not let you get loans when you are on temperary disability. I am feeling pressure to post pone getting the removal surgey everyone is telling me it's no big deal. That i should wait a few months. I am not afraid to wait but am i making a horrible descion in waiting? I just think most people have no idea what the dangers or signs of skin cancer are includeing myself. Sorry if i'm ranting now. If i wait for a few more months am i putting myself in increased danger? Although i did tell my fiance if we can't find "the one" by the end of october i am schdueling and will not wait longer because of the wait of escrow and all that i would not even be able to schedule hte surgery untill months after we find "the one". Thanks for reading. 

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jualonso's picture
Replies 6
Last reply 9/23/2014 - 11:44am
Replies by: Mat, RJoeyB, JerryfromFauq, Anonymous

Hi folks,

I would like to know if some of you have heard about this treatment and if is the same as TIL or something little different.

http://www.medscape.com/viewarticle/831551

Thanks for your response

Jualonso

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JoshF's picture
Replies 5
Last reply 9/23/2014 - 11:29am
Replies by: Mat, rick1981, ecc26, dvd

Hello Friends-

A friend of mine has a friend that is now stage 4. I don't know all the details but intial diagnosis was Stage 3 in 2012 with cells found in a lymph node. This year went to stage 4 and did IL2 with progression right away. I'm told there is metastasis to soft tissues, bones, liver and I believe lungs. The way my friend has talked about it...maybe he'll have a year left. Not sure if he is BRAF + or -.

I guess I'd like to know from Stage 4 patients who have a a moderate to heavy tumor burden and are still fighting or NED. As many of you know I'm stage 4...currently NED and in a Promethesus combo trial of Ipi and IL2. I did yervoy last Oct-Dec and then did 22 of 24 bags of IL2 in January. Scan since have been clear and I have scans coming up Oct 3rd. I did not have any lymph node invovement, the crap just decided to show up in my lungs. That being said I had low tumor burden and I'm not sure how much it matters. This guy was Stage 3 and fell into the 70% survival rate for his staging...I wish they'd update that. The way it sounds...he was told he was in better place than many but as we all know...this beast is tricky.

I have reached out to these people to try and get more info. They're going through a lot and I'd like to try and provide support....hope. I just hate when I hear someone is given a "timeline" to live. He clearly is prepared to fight but the way it sounds death is imminent. I've heard some great stories here and given the opportunity I'd like to share....give hope that he can be around more than a year!!!

Josh

Let's work for better treatments....for a cure!!!!

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holy moly melanomy's picture
Replies 9
Last reply 9/23/2014 - 1:24am

Hello lovelys!

I've been able to hold most of myself together during these last 19 months A.D. (After Diagnosis).  It took me a bit to get back to stable ground and I've been doing just fine for about the last year or so.  However a recent "bump" in the road....or I should say "lump" on my back...threw me back into darkness of Mela-Land.  My husband found a mass on back about an inch or so between my spine and my WE scar the first of this month.  I'm fairly certain it's just a lipoma, but of course there is that evil voice in my head that is telling me the beast is back.

 

Curious if anyone in Southern CA has a support group that they go to?  I went to one about a year ago after I had an enlarged lymph node pop up on my neck/base of skull.   Although the ladies were super nice - I just didn't fit.  They had all been together for like 10-15+ years and about 95% of them were Breast Cancer survivors as well as they were all 65+ years old.  I'm not discriminating on age or cancer, I'd just personnally rather attend a meeting for Melanoma, or at least a group with a few Melahomies.

I'm open to all suggestions :)  Thank you!

 

~Amber~

holymolymelanomy.blogspot.com

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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Lav4789's picture
Replies 1
Last reply 9/22/2014 - 9:45pm
Replies by: Bubbles

I am a 34 year old mom of a 4 month old and 3 year old.  I was diagnosed in March with Stage 2 that was found on my back by my dermatologist.  Surgery was done (while pregnant) and margins were removed as well as a node under my arm that seemed to light up with die.  Path report came back clear for all tissue and node.  The only cancer was the biopsy done at first appointment.  Unfortunately it came back over 4th of July weekend in two lymph nodes on my neck/shoulder.  PET scan and Brain MRI both showed that the only cancer was the two nodes.  Had surgery and removed 27 nodes including the two cancerous ones.  Path results showed no other cancer.  Just had a PET scan 2 fridays ago and nothing showed up!!!   Now we are deciding between Interferon and a trial with Vemurafenib.  Various doctors are saying different things.  Not sure which route to go.  Anyone hav experiences with either of these?  Side effects? Recurrence?  The trial is Placebo or drug...not sure how I feel about it, but feel I need to do something other than sit and wait.  Thanks!

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Anonymous's picture
Anonymous
Replies 10
Last reply 9/22/2014 - 9:09pm
Replies by: Anonymous, Squash, Annalive, Tim--MRF

I have been looking at some links and a documentary about the use of a drug he developed privately. My search started as i was looking for research and studies on the use of cannabis for melanoma. Does anyone heard about Dr Burzinsky's Clinic in Texas? There is so much debate about his approach and some conspiracy theories attached to it that it is hard to come to a sane conclusion. My son is receiving IPI and is in stage 3C, so I keep looking for alternative treatment should we find ourselves in that place. Dr Burzinsky seems to have had some success (25%) success with cancer patients with brain tumors who do not want to take the path of radiation for many good reasons. Thank you for your help and time.

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Ying's picture
Replies 7
Last reply 9/22/2014 - 6:13pm
Replies by: ecc26, Ying, Anonymous, Linny

Hi everyone! My mom was diagnosed as having melanoma in 2011, recently developed to Stage 4 with metastasis to lung. She has NRAS mutation which is very very rare here in China, and when we went to the best melanoma treating hospital, we learnt that currently there's no specific drug for this mutation type. We are very disappointed. 

 
I did quite a lot research on website and seeking any possibility to get medical treatment aboard. I've been to this forum for several months already but never posted anything. This is my first post. Could anyone suggest some good melanoma treating centres in any countries especially in U.S. and Australia? We desperately need this information.
 
Thank you!
 
Ying

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BrianP's picture
Replies 9
Last reply 9/22/2014 - 1:08pm

Hey Chris,

Was just wondering how you are doing.  By my calculations you should be coming up on your 3rd Ipi soon.  Hope things are going well.

Brian

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