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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JenC's picture
Replies 7
Last reply 9/25/2010 - 12:14am
Replies by: lhaley, JenC, jag, Sherron, Tim--MRF

My husband has been on the control arm of the BRAF trial, and as we expected the DTIC did not work.  We were obviously hopeful that he could have gotten the study drug and were willing to give the DTIC a shot, but I am now hoping that we didn't sacrifice precious time.  He went into the trial with maybe half a dozen subcutaneous tumors and is leaving it with spots in his lung, liver and a golf ball sized tumor in his face and constant pain.  Hopefully his participation helped further the FDA approval of the drug.

The next step is high dose IL2.

JenC

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Bruce in NH's picture
Replies 20
Last reply 10/2/2010 - 6:49pm

Hi Friends,

I haven't posted for a while but have kept up with those of you like me who are participating in the compassionate use ipi trial program (10 weeks of 4 ipi infusions every 3 weeks). I've completed the first 10 weeks and my CT scans showed slight reduction in tumor size for two tumors in my left lung and center chest. I have been trying to get rid of these sites since diagnosed Stage IV back in December, 2008. You can get more details by clicking on my profile. In any case, I hope my PET scans tomorrow show some reduction in activity level within the nodes.

My options going forward would be a repeat of the ipi 10 week trial; surgery to remove the nodes (very high risk due to placement in the chest) and BRAF testing/trial. Hoping for the best, and my thoughts and prayers continue for all who fight this disease, especially for those caregivers who recently posted after losing their loved ones. Collectively we will continue the fight for you and for our children and grandchildren.

Hope and peace to all,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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tsoemd's picture
Replies 1
Last reply 9/23/2010 - 10:58am
Replies by: SusanE

http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&sq=september%2019,%202010%20and%20melanoma&st=cse&adxnnl=1&scp=1&adxnnlx=1285174989-REekyEfISOM1TDxteT1XOQ

Please refer to the above link for the New York Times article that talks about this very promising drug called PLX 4032 - a highly selective V600E BRAF kinase inhibitor that is found to be effective in melanoma.  Unlike the study discussed in the NYT article, the study that we have will not randomize patients to DTIC (old chemotherapy regimen).  As long as the patient's melanoma is BRAF positive, they are given PLX 4032.  For more details, please contact Elisa Bomgaars, MD at 402-354-5860.  We are recruiting patients still but the study will complete accrual soon.

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himynameiskevin's picture
Replies 14
Last reply 9/24/2010 - 4:40pm

Hey everyone, I've been home from the hospital since friday. I tolerated 11 bags of IL-2 the scond round. The side effects were much worse this time as I was told and expected. I've been taking it easy, resting and recovering here at home. Happy to say that today I finally feel like myself again. Got my first good nights sleep in weeks and only lingering effects are dry hands and a little body itching. And all i do now is wait, I get another Mri in a couple weeks and a ct scan in 5 weeks and see if these things are shrinking. It's kind of nice, these 5 weeks of waiting... no appointments, no hospitals, no bad news, almost like 5 a five week vacation. Time to focus on being me again. Going to get back into the mix at work. I plan on spending alot of time outdoors, staying busy and being active as much as I can. Fill my mind with all the thoughts I had before all of this. Make my self mentally and emotionally healthy inhopes the physical will follow. Just going enjoy this time I have here and try to manifest some positve news from the doctor. We'll see. Hoping and praying.

 

 

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Shelby - MRF's picture
Replies 21
Last reply 12/31/2011 - 3:48am

Hello everyone,

We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not...to say the least.  So, here are my questions to you:

1.  What would make YOU go into the chat room?

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

3.  If so, what topics would you want to chat about?

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

Sincerely,

Shelby Moneer, MRF Health Educator

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Lori C's picture
Replies 5
Last reply 9/22/2010 - 4:54pm

Will had his fourth round of Carboplatin  & Taxol.  I'm still nervously awaiting his brain scan (MRI) results.  He had the scan at one hospital (local) and they were to fax the results to Rush (his treatment hospital).  I thought it would be there yesterday but nada.   He has not vomited in a week now, which is good.  The fatigue remains serious.  I talked to the chemo nurse about it and she thought that it might be in part from weakness and walking more might help.  That makes sense as he has been somewhat resistant to doing much and has indeed gotten weaker as a result. 

In 3 weeks he has another CT scan to see how the chemo is going and if all is okay, 2 more rounds.  No idea what might come next, though.  I guess it depends on many variables.  Prayers & good thoughts for the various scans much appreciated.  I'm bringing him back to my house again today.  It has become very difficult to care for him in his own place.

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The Gambler's picture
Replies 2
Last reply 9/23/2010 - 8:22pm
Replies by: Anonymous

Marsha  Karen  Brandi  Diane  Mary  James  Jim M  Cara  JAG  Al  Linda.....Wow I feel like i have been adopted by a large  family. You all sent me a lot of good ideas and suggestions and most of all your support and I am very thankful. Currently I have a good oncologist and he has me on a routine schedule of exams and scans and next up is a doctor of naturopathic medicine so Deb and I are moving forward with this and I have gotten validation from several on the direction which makes me feel good....... again thank you and Deb and I will stay in touch..   Bob 

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NancyGM's picture
Replies 3
Last reply 9/22/2010 - 9:41am
Replies by: jag, NancyGM, TAC

I have been NED for 2 and a half years, working and making under $1000/ month for one year. My disability redetermination with Social Security was denied and now I am in the process of appealing the decision based on the fact that stage IV is a "condition" one is not expected to recover from whether one currently has active disease or not. Without my medicare/ medicaid I will not be able to be monitored for reccurrence.

My question is:  Do I need to find an attorney? I can't afford one. I will have to pay back all the months of benefits I receive during this appeal process if I am denied again. 

For the last year or so, I have been in NED "busy living" land...Please know I admire all who remain here to offer support and guidance while well. Thank you for any information.

NancyGM

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Linda J's picture
Replies 2
Last reply 9/22/2010 - 9:36am

PET scan results were good - there were no new tumors aside from the ones they already knew about. I've got good organs. 

So the plan is to continue on with radiation (I'm in week three) and then have surgery to remove the remainder of the tumor and lymph nodes three to four weeks later. 

They did mention today that I tested positive for BRAF - and then it was mentioned that maybe they will get me on the drug before surgery.  Does this make sense?  I don't know much about BRAF.   Can you do BRAF stuff after the cancer has been taken out?  How long do the BRAF drugs take?  I'm waiting to have an appointment with the medical oncologist in charge of clinical research.

So, today wasn't as bad as I thought it was going to be :-)

Live strong!

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Anonymous's picture
Anonymous
Replies 0

Has anybody ever heard the term "tumor fever"  We were told about this today and can't find alot about it.  We were told that you get this with heavy tomor load.  I did read that it could be from tumor's breaking down?  Basically he has had chlls and fever temp spiked 102.8 body felt very hot to touch in the area where most mets are.  Fever lasted approximately 1 hour then went to 97.? and has been without fever since?????

 

Just asking....

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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jag's picture
Replies 6
Last reply 1/25/2013 - 5:10pm

I remember when I was first diagnosed reading about stage IV People who used Celebrex to keep their disease stable.  I was wondering if they are still alive.  Especially since a lot of people on here have been having trouble with pain management lately.

Insert Generic Inspirational Motto Here

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gbaum's picture
Replies 13
Last reply 9/30/2010 - 12:28pm

My wife Aze lost her battle with Vulva Melanoma.. She fought it for 10 months and the cancer won. Aze went peacefully and we were able to say what we wanted to to each other. I will miss here very much.. We just celebrated our 1 year aniversary on August 18th and she passed 6 days later.. Our baby Sophia and I will be moving back to the USA now to start a new beginning. 

I want to thank everyone for the advice and support we received from you all. I wish you all the best in this battle which I hope there comes a cure one day. Stay strong and don't give up hope.. God Bless everyone..

 

Gary

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ipi in DC's picture
Replies 4
Last reply 9/20/2010 - 9:20pm
Replies by: ValinMtl, Anonymous, Jim in Denver

Hey everybody,

Just wanted to update you on trial, 6 weeks in, 2 ipi infusions and Temador doses prior to this trip.

First for those who know my old handle, I changed it to ipi in DC instead of Mel in DC hope to one day soon change it to Mel out of DC.

We went to MD last Wednesday had CT & MRI on Thursday and then visited with Dr Bedikian on Friday. They were happy with the results so we could stay on the trial :) I have a subcutanous nodule on my lower back that shrunk from 12mm to 9mm and the nodules in the lungs did increase a little in size but it was half the growth than the previous six weeks growth prior to starting the trial.

Since the latest Ipi infusion and taking the Temador the nodule on my back has shrunk further and is almost hard to find. I contribute that to the Temador it did shrink the first dose also but regained its size a week later, but the second dose it shrunk and stayed smaller. So hopefully the Temador will breakup the nodules and make it easier for the Ipi modified T cells to come in and finish the job to totally destroy the remaining cells, which is how they discribed they were hoping this combo work. 

The side effects I am having to date is light constipation just while taking the Temador and nausea meds. Feel nasty for the last day of Temador and two days following (fells like the body has poison flowing through everywhere, which it is) then feel great until next dose. Light on and off headache during fisrts week after infusion. Skin rash I beleive from the Ipi on lower back, armppits, pelvic area at belt line. top of feet. The rash seems to like the hairy areas that hold sweat and heat. And rash type bumps spread out on forearms. Have a constant walking itch over entire body which I think is from the chemo (stops the body and cancer cells from dividing) drying out the skin, starts to get better just before next dose.

My bloodwork has stayed "perfect" on all counts according to Sandy  the research nurse (she was very suprised), which is great, I am less susceptable to infection.

Thats about it, please feel free to ask any questions or thoughts,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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Replies by: Love_Monkey, jtheisen29, Tim--MRF, King, Anonymous, paleskinisin

Rachael was diagnosed at 5 and has been NED since September 24, 2009.  We only have 9 more weeks of interferon and she's doing great!

I started a new project to help other families who have children diagnosed with melanoma.  I'm hoping it will be a place that new parents come come to, get their questions answered and not be scared.  I have linked this board in the "Resources" and would like to ask ya'll to keep this site in mind when you have parents of children come here to ask questions.

Littlest Warrior Spot

Blessings to you all!

Danielle

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The Gambler's picture
Replies 7
Last reply 9/21/2010 - 10:47pm

With much support from my " loving wife Deb " I feel informed enough to make a choice which way to go in reguards to what type of  treatment. Being at stage 3c my options did not seem to be many, my surgeon and oncologist said no to radiation and chemo which left Interferon and clinical trials. So I tried to soak up all I could on these two topics between the internet sites and my oncologist and it seems that being stage 3c limits my choices ( it opens up more for the stage 4 ).

Since my primary tumor was never found my oncologist said to me it was possible that my immune system destroyed it ( like it is suppose to ) but during the battle one or more cancer cells escaped and took refuge in my lymph node ( groin area ) and was well fed and nurished by the lymph system until it got big enough for me to feel it. If this is true it tells me my immune system was doing its job and there is a chance that it is currently doing battle with the bastards as I speak.

The information I read on the trials and interferon side and their effects frankly scare the hell out of me. I am aware that not everyone has the severe side affects but there is always that chance. The interferon is a year long commitment that can change a good immune system to a poor or non-existent one, opening the door to all the everyday germs and viruses ( even yearly colds and flu are killing people ). So I set out on a quest to get info on non chemical Naturpathic immune system therapy and I see it is a whole other world and most probable there are two camps "chemical and natural".

With being stage 3c at this time I feel I have a shot at the natural path although I know there is a possibility of being well on my way to stage 4 currently but untill I get my next Pet Scan there is no proof so I will continue on as 3c. One of the things important to me is quality of life and currently I feel good as I did before I was diagnosed. I have my loving wife, three beautiful daughters and two georgeous grandchildren.

Through all of this as Deb and I have tried to make sense of it all, understand the pro and con's of choices and decisions. I was imagining the inside of an old western Saloon where people brought in their last hard earned dollar in hopes that whether it be a simple deck of cards or dice you get lucky and get the winning hand  just like we are doing with melanoma, it all seems to be about  "odds, percentages ratio's".

For those of you who read this I would welcome your comments reguarding the Naturopathic Therapy care and what experiences they have had.

Thanks... Bob

bob.rogers2010@gmail.com

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