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.

Expand/ Collapse Topic
 
Replies By
View Topic
ecc26's picture
Replies 10
Last reply 10/1/2014 - 8:45pm

Hi everyone!

I hope you all are having a good day today. I had been training for a 5k charity run for our local Cancer Resource Center that was to occur at the end of October. With my recent craniotomy, 5k is just not going to happen, but there is also an option for a 2 mile walk, which given my recover is definitely possible and I plan to participate in that segment instead. I have a few team members (my mom and some co-workers), but we need a good team name and I was hoping perhaps some of you out there might have some good ideas. 

I'd love to hear any ideas any of you have for a team name

 

Thanks, and again, I sincerely hope you are all well today

 

-Eva

Login or register to post replies.

JerryfromFauq's picture
Replies 6
Last reply 9/29/2014 - 4:49pm

HAS ONYONE BEEN ABLE TOENTER THE CHAT ROOM IN THE PAST WEEK?  I HAVE TRIED EVRY  FEW DAYS WITH A ZERO SUCESS RATE!

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

Login or register to post replies.

arthurjedi007's picture
Replies 17
Last reply 9/26/2014 - 3:36pm

I was wondering how long after the TIL treatment they have you come back for scans which I assume is to see if there are signs yet of it working?

I'm trying to figure out my plan B of TIL. I know the intial wait for the visit. Then the harvest and if that's good the 6 weeks to cook up the cells. Then the week of depletion. The new cells and week of whatever to stimulate which probably for me would be il-2. After that I'm not sure.

Still hoping for plan A of pd1 to be fantastic. Got a good start with over a dozen tumors shrinking and scans in a couple weeks I hope will show great. But pretty much overnight I lost some functionality of my left leg. Like if I'm sitting in a chair I can't lift my foot off the floor. But standing I can and walking is getting better without much pain. Also not as much pain in lower back and left hip. I also noticed in my last scan report there were 7 growing tumors instead of 5. So dunno if the leg issue is due to the left sacral ala tumor or what. I just finished radiation to lower spine and head last Monday and 7th pd1 Tuesday so haven't really felt like fighting another round of something going wrong. The leg issue started Monday morning.

Thanks,

Artie

 

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

tbmorgan's picture
Replies 5
Last reply 9/26/2014 - 2:39am
Replies by: JerryfromFauq, tbmorgan, Patina, 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.........

 

Login or register to post replies.

katie1's picture
Replies 7
Last reply 9/28/2014 - 6:30pm

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

Login or register to post replies.

Ginger8888's picture
Replies 18
Last reply 9/26/2014 - 11:19am

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..

Login or register to post replies.

sweetaugust's picture
Replies 14
Last reply 9/28/2014 - 12:11pm

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

Login or register to post replies.

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. 

Login or register to post replies.

JoshF's picture
Replies 8
Last reply 9/28/2014 - 1:55pm
Replies by: oldblue, ecc26, JoshF, Mat, rick1981, 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!!!!

Login or register to post replies.

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

 

Login or register to post replies.

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!

Login or register to post replies.

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?

Login or register to post replies.

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.”

Login or register to post replies.

Pages