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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Carmon in NM's picture
Replies 5
Last reply 3/5/2011 - 10:45pm

The clinical drug trial I'm on that is working so well for me is INST 0903: Phase II of Carboplatin,Paclitaxel, and Temozolomide

I was so happy when the protocol nurse told me that everyone at UNM on this trial has responded as well as I have. It was wonderful to post some good news on here, especially with so many newly diagnosed folks signing on. Except for those people with a known gene mutation, no one ever seems to know just why one person responds to a drug combo and the next one doesn't . Having 100% of the people here in this trial responding is pretty exciting! This combo is too new to have any idea about recurrance rates but I did find some info on the Phase I trial that set the dosage and one woman has remained NED for four years now.

I'm also very happy that I only have one more infusion to go on March 14th! I'll have a consultation with the oncology surgeon then to talk about how she'll go about removing my adrenal gland and to set a date for that surgery. My husband commented this morning on the phone that I'm getting quite a collection of surgical scars. I told him it was a good thing that there is at least one man out there who 'digs women with scars'!

Wishing you all out there equally happy results in whatever treatments you are in progress with! Carmon in NM

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Lisa - Aust's picture
Replies 1
Last reply 2/17/2011 - 7:19pm
Replies by: EricNJill

Hi Jill,

I saw you guys on the video blog with Jay and Clint! It popped up on my facebook! Great to see you guys are doing well, hope you are having fun with the boys.

All the best

Lisa - Aust

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Emrina's picture
Replies 4
Last reply 2/18/2011 - 9:05pm
Replies by: SusanE, Hawaii Bob

Good Day to you all from South Africa.  My husband was diagnosed with Stage IV MM on 22 December 2010.  The Melanoma has spread to 2 occipital lymphnodes, right cervical lymph node and additional smaller (sub-cm) nodes as well as a single  node present in the posperior mediastinum and both lungs (muliple bilateral pulmonary metastases).  He was given 3 options.  No treatment, DTIC or the Clinical Trail.  We went for a 2nd opinion and the diagnoses was the same.  He was approved to take part in the OncoVex Clinical Trail.  Luckily he got the OncoVex GM-SCF arm of the trail.  He had his first injection on 18 January 2011 and the 2nd on 8 February 2011.  His next injection will be 22 February 2011.  He had side effects like headaches, vomiting, nausea, body aches and pains, tiredness and overall just not feeling well.  With the 2nd injection he had with the mentions side effects diaree also.  I have found only 1 guy in America that was on OncoVex for a year and he a "partial responder".  Is there anybody out there that is willing to share their experience with OncoVex with us. 

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JenC's picture
Replies 15
Last reply 5/12/2011 - 1:49pm

My husband has been in this horrible fight for 17 months. Each step of the way has been met with disappointment and loss of hope. He has done the standard treatments of surgery, adjuvant radiation and interferon, tried to get on the braf trial only to get the control, IL-2 and more radiation and now ipi. However it seems that there is no getting ahead of this cancer. He hasn't been able to eat mostly due to pain and nausea but also due to the fact that he has tumors on both sides of his throat which causes difficult swallowing. His oncologist has always been positive, but was not able to offer much hope during this week's visit. My husband is down 60 pounds and looks like a cancer patient. He is on week 7 of the ipi trial and we're holding on to some hope that his tumors could still shrink, however his body cannot heal small wounds, let alone massive tumors. We have a home health and hospice nurse but are not ready to give up completely. I have read this board quite often in the past year and a half and have found hope and insight. I have read many of your stories and have been inspired. I don't want to just complain about our struggles, but maybe someone out there could provide words of hope. My hope has caused me to go on with my day life almost to the point of not facing the graveness of his situation. Life has been full and busy with two young children and a full time job. I am at a point where I may need to let go of some of my hope and just be with my husband. I hope I don't make my decision when it's too late.
Thanks for listening
JenC

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I need advice---and maybe for someone to tell me to stop overreacting--but it has been exactly 3 weeks today since my sugery, I was healing well, handling the pain of the 5 incision, etc, until today. Although I have been taking it super easy, the pain tonight has been intense. It feels like my nerves are waking up in my shoulders, neck, arms. The numbness isn't really numbness anymore. It is more of a tingling pain. None of this is unusual...I have had these problems since the surgery. But it is becoming a little worse. For example, someone touched my chest bone to remove a piece of lint today and it HURT. not like a cry out in pain hurt, more of a "please don't touch me" type of hurt. Another example, my boyfriend ran his hand down the back of my arm and I cringed. I have had all of these pains before...but it seems intensified today. I don't know if I did too much yesterday/today?

What IS really unusual is the fact that my lymph nodes in my neck are swollen.

I was checking out my neck incisions tonight because of the pain level...started feeling around...it feels like there are two small rocks placed above the incision sites. Asked the boyfriend to feel and he said it definitely feels harder than he imagined it would...All other sites (both armpits, back incision) look fine...Still overly numb.

Should I be concerned? Should I call my oncologist tomorrow? I have an appointment at Memorial Sloan Kettering on the 25th, I don't know if I should wait until then, or check in with my local oncologist.

I realize I may be overreacting...but I was told to keep an eye open for swollen nodes...so now I am a nervous wreck.

I apologize if I am being dramatic........Advice, anyone? frown

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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dennest's picture
Replies 15
Last reply 3/5/2011 - 8:19pm

Hello,

I was diagnosed back in April with a stage 1 melanoma. My site was .35mm. I had a wide excision and no further treatment. I know that I was incredibly lucky to have caught it so early, but now that some time has gone by, I feel like I should have done more even though further treatment is not recommended.

My husband and I are looking to have another child, and I am finding it extremely hard to decide if we should proceed with our family plan. Of course most doctors say we should wait for at least two years before getting pregnant. Has anyone had a similar experience with this? If so, how long did you wait, did your pregnancy go well, and did you have any recurrances, etc?

Thank you.

 DEnnest

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WalterA's picture
Replies 3
Last reply 2/16/2011 - 11:11pm

On Friday morning I'm going to have radiofrequency ablation to attack the lesion that was picked up on my scans Monday. The PET scan today (Wednesday) didn't pick up anything else, so my surgeon/oncologist and the doctor who actually will do the procedure are confident that we're on the right track.

Yep, Linda, this is Walter who was from Charleston but now is in Lexington. I'm still going to Charleston for my treatment.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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Wetterhorn's picture
Replies 8
Last reply 2/17/2011 - 10:13am

Bright and early. 7 AM early as a matter of fact, up at Sloan Kettering.  5:45 AM arrival time. At least I won't have to wait around (hopefully) as I am first up. This will be my 5th surgery in 3.5 years. This time on my small intestine. Not looking forward to it, but hopefully I can say NED again tomorrow late morning.  Wish me luck.

Wetterhorn

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ErinMcH's picture
Replies 4
Last reply 2/22/2011 - 11:51am
Replies by: ErinMcH, AS123

Hi!   My name is Erin..... short story, have had one Stage 1 and two in situ's over the past 14 yrs.   I'm now a mom of 2 kids, a 4 y/o and a 15 mo old, and living in Arizona.  (Way back yonder when I was very active on mpip, I was living in Seattle).    I went to pick my 4 y/o daughter up from preschool yesterday, and she did not have her pricey Coolio hat on.....realized she was sunburned from scalp to arms.   Her school KNOWS to apply sunscreen after lunch all over her, and to wear her hat.   I was so incredibly ticked off when I came home and recognized her scalp's burn.   I went straight away to her headmaster and her 2 teachers this morning, who gave me the "oh, I couldn't find her hat (bull), and forgot to put on the sunscreen (when there's a note on the door saying to apply sunscreen....WTF.)  "You want her to wear the hat even if it's 60?"  HE-LLO.   

So I know this note is totally random and doesn't have anything to do with me (my last in situ was 5 yrs ago; I still get mole mapped yearly and see my melanoma doc here twice a year.)   I was VERY lucky I knew/know what cancerous moles looked like, and that I had the first one removed when I did.  (That was a freak show....senior in college in Cleveland (hence, Allison Vidimos/CCF as my doc; still consider her my doc), had mono in the spring, was supposed to go to Ireland for spring break.....instead, went home, begged my mom to drag me to the derm to have the mole removed (even though I was in bed basically immobile.)   Voila- stage 1.   

Now that I have my own kids, I'm a freak about sun protection.   My friends (well, some) look @ me that my child(ren) wear long sleeved/legged swimwear everywhere instead of cutsie bikinis.   Grrr. 

Needed a real outlet to vent..... I'm totally type A when it comes to melanoma.  (I sent my dads friend to a derm 7 or 8 yrs ago to look @ a mole.... indeed, he had stage 2 melanoma.  Still alive.) 

Off my random soapbox......

wanted to say Hi....let's see if my daughter will be wearing her hat and has had sunscreen re-applied when I pick her up soon from school.   

-Erin

The butterfly counts not months but moments, and has time enough~ Tagore

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Just a reminder that UNC-Chapel Hill School of Medicine is hosting a Melanoma Patient Day next Wednesday, Feb. 23, 2011.  The event will go from 12:30-4:30pm and will be held in the William and Ida Friday Center for Continuing Education.  Use the following link to see the agenda, brochure, or to register:

http://www.melanoma.org/get-involved/unc-chapel-hill-melanoma-patient-day 

Contact Shelby Moneer at smoneer@melanoma.org or call (800) 673-1290 for additional information or to register. 

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Carmon in NM's picture
Replies 5
Last reply 2/16/2011 - 8:45pm

I just got through seeing my onc after having a full body CT scan and brain MRI this morning and that pesky tumor on my adrenal gland has shrunk some more! It started out at 2.3 cm and now after four infusions it is down to 0.72 cm! No new mets in my brain or anywhere else! There is a spot on my lung and a couple of anomalies in my brain that they have been watching but nothing that has changed or shows any activity.

I asked if they could tell me how the others are doing on this drug trial and the protocol nurse said that everyone has responded just as well and that they are very excited about it. I'm sitting and waiting to go in for my 5 hour drug infusion so I don't have my notes with me but I'll post the number of this drug trial here tonight or tomorrow in case anyone wants to look into it. It's a combination of carboplatin, carbotaxil and temodar.

We be doing a happy dance here in New Mexico! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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himynameiskevin's picture
Replies 4
Last reply 2/16/2011 - 7:29pm

It's been a month since I last posted an update and I've got a few hours until my scans, so I figured I'd say hello from the library here at the NIH. Not much has changed since my last post, I've been working a lot, going on bike rides a few times a week, and I actually went skydiving for the first time a couple weeks ago. It was pretty fun. And that's about it. As far as the medical stuff goes, I'm back here for my 2nd monthly-scans; CT scans in a couple hours and an MRI tonight. I'll talk to the doctors tomorrow and see what the have to say. Hopefully the scans show something that results in good news. If so, I'll be sure post it here. Well, I hope you're all doing good and staying postive. I'll talk to you soon.

-Kevin

 

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With reference to the recent discussion? on alternative or what ever....I am asking Jake what he did and where did he go for treatment from when he was diagnosed to when he found us here?  I am trying to see did you do alternative stuff and if so what was it.  As I see you advanced from I think stage one to stage 3 and it is not clear to me other than your stage 3 was a node.  so from when you first were dx'd in I think 2007 till say fall of 2010 what treatment did you go on?

How did you know that your node was one of the evil ones.   I have the odd one that swells up but just waiting for it to shrink and it does, always does give me a panic,  people here are great, in helping me gimp along and I adhere to their advice.  right from when I lost my eyelid, and still all the on going things.  So I wonder if alternative and I still do not know what this is.  would diet alone have saved my eyelid?  would diet alone not made me (only one in my famiy) not lose both breasts to breast cancer (not melanoma related, but I swear my body knows how to do nasty things now)  I never sunbathed, I never went to tanning beds, heck I shunned the sun  yet I still developed a 4mm thick mel on the back of my neck, thank God I am ok.  No SNB was done, as that was not available here at that time. 

 

So what exactly in your words made simple for me, is alternative.  certainly not accupuncture, accupressure, gobbling up green veggies 24/7  I eat healthy yes,I limit my sugar and salt, alcohol in moderation, I have developed osteoporosis, I have NPH and from that I now enjoy having a shunt installed in my brain with a tube running down my neck to my tummy cauysing me to feel and look  HUGE and I imagine CSF dripping into my tummy making me even fatter I bet.

Just a a thought.   The people here who responded severly have been through hell and are attempting to crawl back, something I think you nor I have not even had to think about. 

Shun me if you wish.....right now, I am too darn tired.  Yes I take my supplements, I take my vit.  I take my meds to stop all weirdo things from happening, and I am always aware of melanoma lurking about maybe never to show its ugly face, again, but maybe it will.  I see so many doctors from eye cancer doctors, to eyelid (hence forth known to everyone here as  EARLID) to boobless doctors, to lady parts doctors, to chiropractors, to Massasage therapsists, even to myu dear little pedicure girl.

 

Bonnie Lea

Just Keep on Hanging In

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Emrina's picture
Replies 2
Last reply 2/16/2011 - 9:56am
Replies by: Emrina, lhaley

Hallo to everybody from South Africa.  My husband has been diagnosed with stage IV Metastatic Melanoma.  Melanoma has spread to his lymph nodes and both lungs.  We were given 3 options.  No treatment, DTIC or the Clinical Trail.  Went for a 2nd opinion, prognosis the same.  He is currently taking part in the OncoVex GM-SCF trail and has received 2 injections.  Still 22 more to go.  This clinical trail Phase III ended 31 January 2011.  Is there anybody out there that has taken part in this trail or in currently still taking part.  Would love to hear from you! 

Regards

Emrina

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tlynn's picture
Replies 11
Last reply 2/17/2011 - 12:40pm

so im coming up on my 2 year mark, i feel like nothing has been done... i have had 4 surgries and am constantly back at the doctor. On top of all that im a college student with no support system around me.... i have been looking for a chat site and stumbled upon this one by chance. My next apt. is on Thursday and im freaking out.. Any advice?

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