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

Hi Lauren,

 

Glad to see you are posting on the Board. How is Jenna?? She is in our prayers.

Login or register to post replies.

jag's picture
Replies 2
Last reply 10/15/2010 - 9:50pm
Insert Generic Inspirational Motto Here

Login or register to post replies.

Jill and Eric in Fl's picture
Replies 40
Last reply 10/29/2010 - 11:32pm

I wanted to post an update to let you know that Eric has been moved to hospice. He was having a lot of pain and the meds we had at home just weren't controlling it anymore, it got so bad Sun night I had to call an ambulance. On the way to the hospital his heart rate was 240, the doctors all came in and gave us our options and he decided no more treatments. He was moved to the hospice house on Tues and they finally have his pain under control and he is very lucid sometimes and very out of it talking nonsense other times. Nights seem to be the hardest he get out of bed and try to go home, last night he told me I was scaring him and that he didn't trust me anymore, I know it's the disease and he medications talking but it broke my heart. He hadn't eaten in 3 days but since the pain is under control he has started to eat  little. We have no way of knowing how long we have left but we know it's between him and God now. We are prying for a peaceful passing or a wonderful miracle. It is very hard because he gets very anxious when I am not here so I try to stay with him but I also need to go and comfort and console my children. My 13 year old daughter, who because of this disease is wise beyond her years, said "Mom, Dad doesn't have much time left, go take care of him, help him with this final journey, you can take care of us later"  They have been wonderful, taking care of things at home and putting on such brave faces. My 10 year old son said it best, "Mom, melanoma is mean"  I couldn't agree more. Praying for peace and comfort for Eric and praying for all the warriors out there battling this awful mean disease

Jill and Eric in Fl

Login or register to post replies.

Hello everyone, this is a good overview of the recent advances in systemic treatment of melanoma from the Annals of Oncology.

For the full text:

http://annonc.oxfordjournals.org/content/21/suppl_7/vii339.full

ABSTRACT

After decades of phase III trials failing to demonstrate an impact on survival of various drugs in metastatic melanoma there are finally significant advances in systemic therapies for melanoma emerging. Novel ways to modulate the immune system by monoclonal antibodies as well as various signalling pathway inhibitors are responsible for creating a whole new therapeutic landscape. For the first time it is likely that a number of new drugs with completely different mechanisms of action will be approved in the near future. The imminent candidates are the anti-CTLA-4 antibody ipilimumab, and the highly selective BRAF inhibitor PLX4032. But in each class other molecules are under development with good perspectives. Various new combinations will have to be explored and it is reasonable to expect synergies between the different classes of drugs as well as between novel molecules within the same class of drugs. Here, an overview of current developments and the most important new drugs under consideration is provided.

 

My best to all of you

Emily - wife of mike, stage 3a - 14 mos NED

www.emandmichael.com

Our experience with melanoma: http://emandmichael.wordpress.com/

Login or register to post replies.

himynameiskevin's picture
Replies 18
Last reply 10/19/2010 - 8:27pm

So I'm 3 weeks and 7 days out of the hospital and IL-2 treatment. All side effects have passed except for a lingering itchy-throat cough that is going away very slowly. I had an MRI done last Monday and thanks to the stereotactic radiation I had done, the tumor in my brain has "essentially vanished" and the rest of my brain appears to me clear of any new lesions. Good news. As for the visible ones on my chest and my back.. the little nodule on my chest definitely seems to be smaller than it was at one time. Good news? After about two weeks after the treatment, the large mass on my back definitely seemed smaller, softer, and any pain accompanied with the pressure of it's size had pretty much disappeared. My wife and good friend confirmed this. Unfortunately a day or two after my MRI, it started to come back to it's normal shape and size and the slight annoying pain is back. I have heard that it is possible for tumors to swell up or grow in ways before shrinking. Has anyone ever heard of this happening? Or experienced something similar? And as for the ones on the inside (liver, lungs, lymphs) I hope they're following the one on my chest and getting smaller. That would be nice. I get my CT scan on the 25th and talk to my doctor about the results on the 27th. Hoping for the best. If I have any positive response to the IL-2 it looks like I'd be doing another round of the IL-2. Which I'd be glad to do.. if that's the case. Lastly, I just found out that my tumors have the BRAF mutation, so the the PLX drug or Ipilimumab seems to be the next step if the IL-2 isn't effective. My doctor mentioned some clinical trials aren't available to people who've had a brain tumor, unfortunate. Not sure if that applies to these options, guess I'll see when I gotten there. Hope all is well with everyone here. It's nice to part of this community. A constant reminder that we're not alone, and there is always hope. Enjoy your day.  -Kevin

Login or register to post replies.

JerryfromFauq's picture
Replies 2
Last reply 10/15/2010 - 9:48pm

i have  posted an update on the off Topic Bulletion Board in response to the many requests for my status and updates from my great Melanoma Patients Information Page (MPIP) Family.  I love this group of caring, compassionate, and intelligent people that I have met during the last 4 years since finding the fabulous group Founded in 1996 by Jeff Paterson to honor his sister-in-law.

My update is under the JerryFauq post by JackieW.

Login or register to post replies.

donswife's picture
Replies 6
Last reply 10/19/2010 - 5:28pm
Replies by: emilypen, donswife, Anonymous, Sherron

Hi.  I am a new user who has a friend who found this site extremely helpful and informative.  It has been recommended to my husband that he participate in a clinical trial with the drug mek kinase.  Does anyone have any experience with this?  We are in Canada.  

Thank you so much!

Never Give Up, Never Surrender

Login or register to post replies.

Sherron's picture
Replies 6
Last reply 10/14/2010 - 10:01pm

Hi Linda - thinking of you today and wishing you the very best on your surgery tomorrow...Prayer & Hugs.

Take Care,

Sherron

Login or register to post replies.

Jen07's picture
Replies 3
Last reply 10/13/2010 - 10:36pm
Replies by: Jaime.30, Anonymous, ChrisB

Hi everyone.  Its been so long since I have been on here.  I had to take a break from this site last year after Andy was done with his interferon.  I love all the support you get from everyone on here but its also sad b/c this disease is just so horrible and is so heart breaking.  Andy has recently had a constant headache that goes from dull to really hurting.  I don't want to say severe b/c it hasn't hurt so bad that he's been layed up in the bed all day from pain.  Anyway, he went to see his PCP for his and they did a CT scan which was negative.  They put him on a 10 day regiment of inflammatory and muscle relaxers which he said eased the pain some but never took it completely away.  He does have some days where the headache goes completely away but not for long.  Anyway, the headache has been going on for 7 weeks now and last week when we went for his 6 month follow up with his oncologist, they suggested he have a MRI done since the ct scan was without contrast and pretty much useless.  His Dr. said she didn't think it was melanoma related since he is showing no other signs such as numbness, slurring speech, visual problems, not being able to focus or keep track of thought.  He's just simply had a constant headache.  She seemed to think a constant migraine.  Either way, i am super worried.  We have been told twice now that he's had cancer and are only 2 1/2 years into remission.  He made it to 3 years last time before we found out it had come back. He's stage 3, btw.  What do you guys think?  Does anyone else suffer from this kind of headache? 

Login or register to post replies.

lmato17's picture
Replies 14
Last reply 10/20/2010 - 5:50pm

I am being offered PLX4032 at Yale. Im not sure if I want to take the drug as I feel like it is a tease. All the research shows that the tumors start dissipating and then after months they come back with a vengeance. Has anyone taking this drug and had long term positive results? What are the side effects? Decisions decisions!! Im so sick of it. Any help would be greatly appreciated.

 

Lisa

Login or register to post replies.

Janet2's picture
Replies 3
Last reply 10/13/2010 - 9:49pm

My first whole brain radiation and my subcutaneous tumour on a different machine is planned for tomorrow morning (stomach) and brain afternoon and my second session is Monday for both. I don't know how I will be after it, but keeping my fingers crossed.

Janet 

Login or register to post replies.

sarahandkawika's picture
Replies 2
Last reply 10/13/2010 - 9:54am

Okay, I blew it and let the stupid Derm do a scrape biopsy on my arm. I won't bore you with details. But this spot is a dyspastic nevus. and of course there are leftover cells in my skin. So, this derm says let him remove all the cells (nope!). MY derm specialist says it is all up to me whether I do or don't, everyone has varied opinion...So I would have the surgeon who did my graft remove the rest if I do...but the question is do I ?

Any Opinions?

Thanks

Sarah, stage 3A NED 3 months

Login or register to post replies.

emilypen's picture
Replies 4
Last reply 10/12/2010 - 8:31pm
Replies by: King, Brandi, lhaley, Fen

HI all,

My husband had a PET scan this morning as it's day 28 of the study he is participating in.

http://clinicaltrials.gov/ct2/show/NCT01155453

We just heard that all the previously existing lesions and tumours have up to 50% SUV reduction. The doctors are thrilled and so are we.

CT scan on Nov. 3rd will hopefully show shrinkage, but we know it's working. He's reduced his pain meds and is in no pain.

woohoo!

Finally something is going in the right direction. :-)

em

Login or register to post replies.

Lori C's picture
Replies 4
Last reply 10/14/2010 - 11:40am
Replies by: Sherron, rj, Fen, Pat from Ohio

I want to thank the remarkable people - patients, caregivers, and everyone else - from this board for their unending support during the time Will was fighting this disease and now, for your overwhelming kindness to me. 

Having lived in Israel & Australia, where melanoma is epidemic, I long had a fear of this disease.  3 years ago, I lost one of my dearest friends to it, after a courageous 9 month battle during which the cancer responded to absolutely nothing.  As she was guardian to her brother's 3 children - he and his wife had been killed in a car accident a year before - this disease seemed to me a vicious, relentless thief.

Will, and his fight, became a part of me in a way that I guess only caregivers can quite understand.  No matter where I was or what I was doing, all of my love and attention really belonged to him.   Will's lifelong fight for autonomy and independence astonished me in it's focus, and he brought the same courage to the fight against this disease.  But he could not do the research, find the resources, and weigh the many variables needed to really battle this monster, and that is where you all provided the most invaluable help.  My only regret is that I didn't find this board far earlier, and that is a profound regret. 

Right now I am feeling, as Jung said, "a fatal resistence to life in this world."  I miss him too desperately to imagine getting through this day, let alone those which may come.  For anyone who didn't know Will, but might like to, here are two - very incomplete - pieces I wrote about him

 
 
I will keep checking this board because I care so about all of you and because I need to stay connected to you.   I owe all of you more than I could ever possibly repay.

Login or register to post replies.

Has anybody heard from Kevin from Atlanta?  He used to be on here quite a bit.  I hope everything is ok.  If you read this Kevin please post and let us know how things are going.  I think you may be finished with the Ipi by now???

 

Linda/Kentucky

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

Login or register to post replies.

Pages