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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Rocco's picture
Replies 4
Last reply 9/26/2014 - 12:50am

OK, likely nothing but..went to see my PCP today as I've felt a small lump under my jaw, close to neck for about 3-4 weeks.  No pain, no real growth/increase in size, just there.  PCP says next step is a CT so attempting to arrange this thru Onc's office rather than PCP.  Leaving PCP he notes that it could be return of Mel....dah..no kidding.  Of course it could be anything but Mel and I need to focus on that until cold, hard facts are in.  Just a bit frazzled to think of having a CT..

Trying to hang in there....

-Rocco

Stage IV since 2005

 

Luke 1:37

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Anonymous's picture
Anonymous
Replies 10
Last reply 9/25/2014 - 10:06pm

I'm struggling here as my family thinks I need to totally change my diet to avoid a recurrence if melanoma. This was discussed with my oncologist who told my father that I didn't progress to Stage 4 because of diet. It was acknowledged that diet is key to general health and well being. Diet doesn't destroy body's ability or immune system to recognize melanoma cells and destroy them. Though it was highly suggested as much as possible to avoid processed foods.So bascially message was diet is helpful but not necessarily going to help avoid a recurrence. Also, my diet isn't great and it isn't bad. It probably needs to be a little more balanced. Not a ton of processed foods but I do like a cookie or ice cream here or there....

I've researched this some and you find arguements that go either way.....adamant that diet is crucial while I saw MDA says "sugar isn;t cause of cancers" or lead to cancer. So which is it? This is very confusing....

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

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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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ecc26's picture
Replies 6
Last reply 9/25/2014 - 12:04am

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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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 3
Last reply 9/24/2014 - 9:49am
Replies by: Anonymous, 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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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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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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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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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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Josh's picture
Replies 11
Last reply 9/22/2014 - 10:37am

Hello,

 

I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial, and my symptoms are getting much worse (crazy pain in knee tumor, night sweats, groin mets getting larger).  I'm writing because I really feel like things are going downhill quickly so I'm considering going off the trial and getting on some other treatment, however, I know that this pd-1 treatment is among the most promising out there. So, for people who have responded well on an anti pd-1 trial, my question is did any of you get worse after the starting the pd-1 infusions, only to suddenly get better? In other words, did anyone feel like the drug wasn't working, only to have it start working after the 3rd or 4th or 5th infusion? Thanks a lot everyone!    

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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 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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