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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JerryfromFauq's picture
Replies 2
Last reply 2/14/2011 - 7:22am
Replies by: jim Breitfeller, moi

http://www.peerview-institute.org/news/content.nsf/PaperFrameSet?OpenFor...

C-kit and Melanoma articles:

Many interesting articles here.   I started the Imatinib in March 2008 and have been essentially stable for almost three years now.  I have a friend whose tumors went away on the Dasatinib.  In:   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831053/?tool=pubmed
A very detailed article.  One interesting item stated is: "While other KIT inhibitors such as dasatinib appear to have better penetration of the blood-brain barrier (Porkka et al., 2008), their efficacy of treating manifest disease in the brain needs to be demonstrated."

 

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

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Anonymous's picture
Anonymous
Replies 0

Thought I would share some information with all of you that might be helpful.  Emory Winship Cancer institute is providing free information to patients and their caregivers on Feb 26th.  To learn more, click on: https://winshipcancer.emory.edu/events/WinshipContentPage.aspx?nd=821&ei...

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elefk's picture
Replies 14
Last reply 2/13/2011 - 8:40pm

I spoke to someone tonight who is NED after taking a concentrated regimen of Xango mangosteen juice, one bottle a day for 21 days along with one gallon of distilled water, after all other treaments had failed for stage four melanoma. Any thoughts?

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KatyWI's picture
Replies 22
Last reply 2/14/2011 - 3:54am

We can never get enough good news around here, so I am doing my part and sharing...I got my pathology back from my craniotomy today.  This was a site that had been treated with cyberknife, but it had grown substantially and had to be removed.  The pathologist looked at two different slices of tissue and concluded that this was necrotic tissue and radiation-induced change.  The words "no evidence of melanoma cells" are actually on the path report in black and white.  DING DONG, THE WITCH IS DEAD!  Between the cyberknife and the ipilimumab, treatment appears to be working for me.  On top of it, the other lesions treated with cyberknife in November aren't even showing up on my post-surgery MRI.  I'm so grateful, humbled, and overjoyed!

I have my 12-week ipi scans on Thursday.  I am hoping for good news in the body to go with the good news in the brain!

KatyWI

Just keep going!

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Jan in OC's picture
Replies 2
Last reply 2/8/2011 - 2:51am

After wearing am "immobilizer" on his arm all weekend, my husband got a bad rash and blisters wherever the sling rubbed.  Don't know if this is an IPI reaction (had first infusion on 1/28) or pain meds or just plain sensitive skin?  Is rash and blistering normal for IPI?  what can he take to help?   The OTC benadryl doesn't seem to be working.  

We saw the orthopedic doc this morning and they put a larger (better) brace on his arm.  The doc wants to wait for 3 weeks until the swelling goes down to decide on surgery due to risk of infection, lymphadema, etc.  In the meantime, he thought there was no reason to delay the MRI and brain radiation, if he can lay still for it.  I have not heard from the RadOnc today, have a call into them.  

One day at a time.....

Jan

laughter is the best medicine

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Terra's picture
Replies 6
Last reply 2/8/2011 - 10:55am

Hi, we have an appointment this week with our oncologist and would like to dicsuss systemic treatments. 

 

My husband is BRAF negative so I am assuming that ipi is the only one - does anyone know of the others?

He had a lung nodule removed in June '10 and a lung node removed in January '11 -we will be having scans soon but I really want to be ready to discuss all and any options with her (most recent scans before surgery showed no other cancer although we have been watching some suspicious spots they have not changed and we don't what they are).

 

Thank so much in advance

Terra

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/14/2011 - 12:09pm

 LOCATION:               BachmanLake Park                                    Pavilion Area                                    3500 Northwest Highway                                    Dallas, TX FORMAT:                  3.3 Mile Leisurely Walk or Run TIME:                          8:00am – Sign-In                                    9:00am – Opening Ceremony                                    9:20am – Warm-Up                                    9:30am – Walk Begins 

FEE:                            No fee to participate.

                                    Each Walker encouraged to raise at least $50.

 

REGISTRATION:                              Registrations received by April 30th will ensure a free t-shirt.

 

COMPLETED PLEDGE SHEET, WAIVER, & DONATIONS:  Due the Day of the Event

 

 

TO REGISTER

 

         Visit:            www.AIMatMelanoma.org

         Click-on:    Participate in a Fundraiser

         Click-on:    AIM for a CURE Melanoma Walk LOGO

         Click-on:    Dallas, TX

 

 

 

 

For additional information, please contact

Jean Schlipmann – Jean@AIMatMelanoma.org 

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Replies by: Fen, KellieSue

Hey all, long time...So I have gotten to my 1 yr anniversary down...and after 2 Pet/CT's I keep getting asked if I have ashma!? So, since 1 month interferon, I have fluid in my lungs and airway constriction.  Anyone else get this?  Did it stay? Is this one of those lifetime side effects that I have been trying to avoid?

And then there is my thyroid.  So the last scan they found something on my thyroid. They (Dr.s) keep telling me they think it is nothing as I go on to the next test.  I have found one article about mel patient who got it in her thyroid...but anyone have thyroid problems after all their treatment?

I am getting a little frustrated. I keep trying to get my body to move on and start getting/feeling healthy. But it seems everytime I get going I get slammed back. And I can't decide how much do I push through and how much a give in.  Any advice is welcome!

Sarah

Stage 3 Mel, NED 1yr

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beatricefromPARIS's picture
Replies 3
Last reply 2/14/2011 - 4:21am
Replies by: Anonymous, y'all Come In, JerryfromFauq

Hi everyone

Recent scans show peritoneal mets (among other) are progressing. Brain still clear.

So Interferon (which kept me stable for a while) has been stopped.

If all goes well, I should start IPI in 2 weeks. I will let you know how it feels!

In 2 years at stage IV, I have had 3 chemos, one bio therapy and interferon.

Options are narrowing down! This one has to work. Touch on wood.

 

 

 

 

 

 

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Lisa - Aust's picture
Replies 2
Last reply 2/12/2011 - 1:40am
Replies by: Lisa - Aust, EricNJill

G'Day Everyone,

http://www.melanomaroadtripusa.com/blog/

Thought some of you may be interested in this. For those of you in the states, keep your eyes peeled for Clint and Jay! My partner Craig and myself have been lucky enough to get to know Clint over the pas tfew years and he really is an amazing person. He recently won 'Young West Australian of the year' which put him in the running for 'Young Australian of the year'. Unfortunately he was pipped at the post by a girl who sailed her boat around Australia. If you ask me, the difference that Clint has made to so many peoples lives here in WA made him the most deserving of the award, but it wasnt to be. Hopefully a few of you will check out their site, follow their journey, and may be lucky enough to come across them.

All the best

Lisa - Aust 

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janiam's picture
Replies 4
Last reply 2/10/2011 - 7:56pm
Replies by: Jerry from Cape Cod, Amy Busby, Anonymous

We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV that have been treated with medications in the past two years.

The purpose of our study is to understand the full impact of malignant Melanoma on patients and their families, including the physical, emotional and social aspects. The results will assist in developing new treatments in the future.

Interviews are by telephone and web, approximately one hour and may be scheduled between 2/17 and 2/23.

Participants receive $200  and it can be donated if so wished.

Please respond with interest or questions to contacts below.

 

Kind Regards,

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710

jmallery@comcast.net

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JakeinNY's picture
Replies 43
Last reply 2/15/2011 - 10:05pm

We all know that there are thousands (maybe millions) of success stories all over the world. Since this site seems to be the largest for melanoma, why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created.

Do the best you can.

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Dawn's picture
Replies 3
Last reply 2/6/2011 - 4:29pm

My nine year old daughter had been doing very well.  She had completed 3 infusions of ipi and things were going great.  However, two weeks ago she suffered a small bleed.  They have done multiple MRI's and cannot see well behind the bleed to see if there is a tumor there for sure or not.  The scans were read and then sent to Sloan Kettering as well.  From my discussions, they believe that they are seeing inflammation on the top of her head area where the cancer is and believe that this looking good.  They also mentioned that the bleed area may have shown slight progression but it has significantly cleared....does that make sense?  She did experience some seizures with the bleed but those are under control and she will be finishing her steroids on Monday.  They are planning on giving her the fourth infusion on Friday of this week.  She is doing well overall.  Her right side is a little weaker but she is regaining strength and mobility.  Also two weeks in the hospital doesn't help that either.  Wondering if anyone else had experienced a bleed while being on ipi?  Or any other thoughts would be helpful.  DawnMarie 

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Jan in OC's picture
Replies 2
Last reply 2/6/2011 - 9:19am

Hi everyone, 

Just got back from taking my husband to the ER.  One of the dogs accidentally hit my husband on the right shoulder and we heard a crack. This is the shoulder with the mel in it (of course).  I rushed him to the ER hoping it was just dislocated.  No such luck.  His humerus bone is shattered.  But it is the weekend, so they just immobilized it and sent him home with pain meds.  Need to see an orthopedic surgeon ASAP (on Monday hopefully).   We were due to go to UCLA this week for another MRI and SRS  for his brain.   Don't know if we will have to postpone this.   He is in a lot of pain and very grouchy.  I just want to lock myself in the closet and have a small meltdown.  When we think things can't get worse, they do!  I know, just take a deep breath and one day at a time.  But it feels very lonely here. Happy thoughts are needed!!!!

Jan, wife to Dirk (our 22nd wedding anniversary was yesterday) 

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lovingwifedeb's picture
Replies 6
Last reply 2/6/2011 - 9:13pm

After Bob’s brain surgery on January 12th it had been decided that he needed to be treated with Gamma Knife Surgery. This procedure was done on Tuesday, February 1st, it was a long process that started at 6 in the morning and we walked out of there by Noon. In the two weeks after Bob’s brain surgery his tumor had started to regrow and instead of the 1/2 hour of radiation planned his doctor decided to be on the aggressive side and treat him with 2 hours.

As this news was being delivered to me by his doctor the words - “larger after surgery” & “regrowing” kept echoing in my head. Bob was prepped and snoring in his chair ready to be rolled away for his radiation treatment. This whole morning was really frightening to me and so was this news of tumor regrowing and as everyone left the room I couldn’t hold back my tears any longer. I realized that I hadn’t really cried since last summer when I had my meltdown. This treatment was getting the best of me today and I couldn’t sort my feelings in all this craziness. Thinking back on the past weeks... one doctor saying he got all the tumor and removed all lymph nodes, now Bob is cancer free, that was in July. Then a brain tumor being removed with a doctor saying he got “most all” of it, that was in January. Now another doctor saying yes, this time he thinks he will get it all with gamma knife, this is February. We are talking 7 months... yes, I want to believe...

I find my heart tearing apart in my chest and my tears rolling silently down my face as I spent 2 hours waiting for Bob to return to me. I have to wonder would I have what it takes as Bob does to wake up each morning knowing it might not be my best days any longer.  I admire him more and more for the man he is and strives to be. He does not complain because of his diagnosis but strives to do his best with what he has been given.

I hate this cancer with every cell of my being. Since Bob’s diagnosis I have read there are a lot of patients that have learned to be grateful for having cancer. I may be just the caregiver but I feel damn close to the subject of cancer and everything I have learned so far. I am not that grateful yet. I am not sure Bob is there yet either. BUT... I am reaching in places inside myself that I did not know existed and had it not been for Bob’s diagnosis I don’t know if I could have explored myself this deeply if for any other reason. I’m sure I have a long ways to go and I don’t look forward IF this cancer road takes me there.

So, we wait until March 7th for one more test, one more deep breath.

Peace to all.

Deb

lovingwife to Bob, stage 4

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