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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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 3
Last reply 9/25/2014 - 10:01pm

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 2
Last reply 10/20/2014 - 5:11am
Replies by: rick1981, Anonymous

Is there anything to look forward to with regard to melanoma being presented at the 2014 European Society of Medical Oncology (ESMO) Annual Congress held September 26-30 in Madrid, Spain?

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/24/2014 - 10:55am
Replies by: arthurjedi007, BrianP, Anonymous, G-Samsa

Former 49ers galvanized by death of Dave Rahn

Posted on September 19, 2014

 

The passing of former 49ers’ public relations executive Dave Rahn has completely rocked former players and even a former owner. Rahn, who was 50, died Thursday in San Diego after a 27-month battle with melanoma. He is survived by his wife, Holly, and countless friends.

 

Several former players and coaches visited Rahn in his final days, and former 49ers linebacker Gary Plummer hosted a well-attended barbecue for him in celebration of his life in July.

Plummer also took Rahn to treatments, appointments and was by his side when he passed on Thursday morning.

“I gave back 100th over the last 27 months of what that dude gave to me,” Plummer said. “It was such an honor.”

While driving from San Diego to Santa Monica for treatments, Plummer said that Rahn was constantly on phone talking to former players, coaches, trainers, and other friends associated with the 49ers during Rahn’s tenure from 1986 to 2002.

“He was like a wheel, and all these spokes from those years came from him,” Plummer said. “He kept the 49ers family from those times together. It’s going to take dozens of people to do what he did.”

After leaving the 49ers, Rahn spent 12 years as a concert manager for Fleetwood Mac, Lionel Richie and Cheryl Crow.
“He would treat the fifth-rung lighting guy the same way he would treat Stevie Nicks.” Plummer said. “What made Dave so special was his ability to connect.”

Former 49ers owner Eddie DeBartolo Jr., flew out to be with Rahn during his final moments. However, with Rahn slipping fast, Plummer and Holly were worried Rahn would pass before DeBartolo’s arrival.

“The last thing he said was that he would hang on until Eddie got there,” Plummer related.

Delayed in Tampa because of a traffic snarl caused by a Barack Obama appearance, DeBartolo, who Rahn simply called, “boss,” did finally arrive to see Rahn through his final moments.

“Eddie was phenomenal,” Plummer said. “I wish I could have recorded it, but out of respect and the humanity of those two, I couldn’t.”

What Rahn worried about most in his final months was that he had not left much financially for Holly, who married him only nine months before he was diagnosed with melanoma. But those who loved Rahn stepped up, including singer Chris Isaak, who made two custom guitars and auctioned them off for $48,000.

“It was amazing, (former players) who give whatever they could, $100, $500,” Plummer said. DeBartolo and other prominent former 49ers have assured Holly that finances will not be a concern.

“You hear so many bad sports stories these days,” Plummer said. “But this one is truly magical.”

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Anonymous's picture
Replies 9
Last reply 9/22/2014 - 6:25am

Plus the crazy story of our travels...if you are interested....  Most importantly!!!! - new cohort added to my trial for NED folks...giving ipi and Nivo!!!!!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

Love and best wishes to all, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Muru's picture
Replies 5
Last reply 9/22/2014 - 4:16am

HI All,

I have Mucosal Melanoma in LaryngoPharynx + stable tiny nodules in Lungs area and Summary of my treatment  are as below:

- Undergone removal of larynx surgery 

-3 cycles of DTIC+Cisplatin+vinblastine - Not a good response

-2 Doses of Yervoy and failed to respond

-Radiation to reduce the pain

-8 cycles of IL-2 and it gave some positive response but it did not last for long. After stopping the medicine for 1 month, the disease reappeared again now.

Now looking at PD-1 as the option to go, as my Dr suggests this new medicine. We have few questions about PD-1

- What is the normal dose to be given. Is it 2 mg/Kg?

- Any idea about the price. As i live in India, i may need to import it

- What is the normal treatment period. For how many months we need to use that.

- Is it effective for Mucosal melanoma

- I am BRAF negative, Will that be a concern to take PD-1

Please help to provide the answers. It should be of great help.

 

Thanks,

Murugesan

 

 

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Kerrid74's picture
Replies 4
Last reply 9/20/2014 - 3:57pm

Good morning everyone.  I am 40 years old and mommy to 2 beautiful babies. Ages 3 and 5.  Last week I was diagnosed with invasive melanoma.  I have been researching non stop and to be honest I am overwhelmed, anxious and confused.  I have a wonderful support system around me, who are also doing plenty to research with me.  Yesterday I had my first appointment at Dana Farber melanoma center with the surgeon.  I was just diagnosed this past Wednesday with a deep biopsy.  So when I saw the surgeon yesterday, she explained my melanoma was .8mm, appeared thin with a mitotic rate of 0. No ulceration. Superficial spreading.  The surgeon said the next step will be next week to have general anesthesia with a wide excision and snb.  My question- is why not a pet scan or ct scan?  I am gung go for the surgery and I did ask her why not a pet scan or ct scan but she said the snb should be next and if that's positive,   Additional testing is next.  Does this sound like normal procedure? I was thinking of a 2nd opinion.  Though I did love the doc I met yesterday.  Thank you, and thought this is not where expected to meet new friends, I'm looking forward to it. 

Kerri

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This morning I  Repeatedly recxeived::

Not Found

The requested URL /melanomachat/htmlchat/123flashchat.html was not found on this server.

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

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JerryfromFauq's picture
Replies 4
Last reply 9/28/2014 - 1:54am

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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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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BrianP's picture
Replies 3
Last reply 9/21/2014 - 7:05pm
Replies by: RJoeyB, BrianP, Brent Morris

I saw this trial mentioned on another forum.  Don't have any details other than the clinical trials website.  Phase I is for many different types of cancer including melanoma.  Phase II is only going to be for NSCLC.  I think it sounds like a very interesting concept.

Here's the clinical trials website link:

http://clinicaltrials.gov/show/NCT02178722

Here's a little information on what IDO is all about:

https://www.sitcancer.org/meetings/am09/presentations/fri/Munn.pdf

 

 

 

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ecc26's picture
Replies 7
Last reply 9/22/2014 - 7:04am

Hello everyone!

I've been pretty absent for a while. I was accepted into Merk's PD-1 EAP back in June right after a round of gamma knife on several small brain mets and had been waiting until my recheck scans to give an update, even though things seemed to be going well. Those scans happened on Sept 2, and I got the results Sept 3. I had been hoping to just be able to post a good update, and as far as the chest/abdome/pelvis it was great news with all previous tumors being reduced in size by at least half, if not basically gone. Unfortunately, the MRI was pretty terrible with 4-5 small, but new mets and one large right frontal mass that again was new but the growth had been so incredibly rapid it was too large for radiation, had central necrosis, and had started to bleed- none of which are ok.

This result sent things a bit into overdrive, especially since I had not had any signs of there being a problem in the brain- no symptoms at all (which I realize is rather lucky) but there was not going to be any waiting around for something to pop up. So after quite a bit of scrambling to get the course I was just hired to teach a couple of months ago in order I had a craniotomy on the 17th (Tuesday). I spent 1 night in ICU (as was expected) then was doing well enough that they moved me out to a regular recovery room. I was expecting to stay there until at least today, more likely tomorrow, but they surprised me by releasing me yesterday afternoon. I had not had any symptoms prior to the surgery and was placed (still on) prophylactic anti-seizure meds and steroids to try and prevent any issues (which are continuing for a while post-op) but even I was surprised about how well I was doing and once the physical therapist cleared me to be able to handle a few stairs they let me go. For which I was very grateful- not only to get somewhere more restful than a hospital but also because my "room-mate" in the surgery recovery room was starting to reveal that she had 25+ years of TB exposure and they had removed a large lung abcess the day after my craniotomy. I have enough problems without adding TB to the list so the second they said we could go we ran. I'm being careful, taking my meds, and not pushing myself too hard, but pretty pleased at how good I feel, how little pain, how good my appetite is, etc. My mom is going to come up and stay for several days starting Sunday and that will be helpfull so that my husband can get back to work without worrying about getting me around, the house, or anything else. 

Mostly I get some occasional, relatively mild and short lived sinus pressure, the incision site looks good (well, kind of gross, but not infected) but is pretty tender to the touch and there's so much gunk (soap, etc) in my hair that I can literally hear it crackle on my head, but I'm feeling pretty lucky all the way around, I think. Technically I would be due this coming week for another PD-1, but that may not happen- I need to have an appointent on Tuesday to check in and see what the status of that may be- we'll see. Otherwise, I'll be headed back for another gamma knife in a few weeks to treat the smaller ones and the healing site from the craniotomy (want to give that area a little bit of healing time first). I'd kind of like to not miss a PD-1 dose, because it's going so well everywhere else, but we'll see what happens. 

Things have been so crazy I really haven't even had much time to read this forum, let alone respond to anyone, so I am sorry for that. I hope that everyone is well and moving along in a positive direction. I've got a couple of days here where I'm not supposed to be doing much though so perhaps I can catch up a bit.

 

Anyway, best of luck to everyone out there battling this very frustrating disease!

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Anonymous's picture
Replies 7
Last reply 9/26/2014 - 10:21am

My father in law is currently very sick and homebound. He has melonoma in his liver, lungs, spine, spleen, and brain. He is physically weak and his mobility is limited. About all he is up for most days is going from his bed to the couch in the living room. Even when on the couch he has to lay down, he cannot sit up for more than a few minutes at a time. Mostly he watches tv and shows little interest in anything else, also he can't really do much else. He started taking the Taf/Mek combo in May, at first it worked really well but then he found out on Monday that it has stopped working and he will be starting Ipi next Monday. This news has been hard on him and it feels like he is withdrawing even more, he has been sleeping around 16hrs a day up from 12 hrs a day before getting this news. He lives with me, my husband, and my brohter in law, the three of us are tyring to think of ways to lift his spirits and stimulate his mind. He has fought really hard over these last 7 months since the mets were found in his liver and we don't want him to give up now especially since there are people who have been on ipi for years and are now no evidence of disease. Any suggestions? Sorry it is such a long post. 

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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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Hstevens0072's picture
Replies 1
Last reply 9/19/2014 - 7:59pm
Replies by: SteveH230

I remember reading a blog of a young mother that had melanoma.  She lived down South and I think went to Vanderbilt for most of her treatment, although is think she also went to MDAnderson.  

Can anyone tell me the name of her blog?  I found it so inspiring and would like to read it again.

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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