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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I wondered if anybody might know how many treatments of chemotherapy one might require before finding out if it is reducing the size of subcutaneous Mets. I have only had one infusion so far and obviously won't know what effect it is having on the tumours in my organs etc until I've had a scan after my second infusion. However, obviously one can one can see subcutaneous mets and I thought others may have seen some signs of them reducing in size after treatment, but didn't know how long this usually takes. Any information would be appreciated.

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Buddy is in rehab now after his fall last Sunday morning at 3AM.  He was in hospital 3 days, transported to rehab center-which is closely  akin to a nursing home to me.  Anyway, his physical therapy is going fine.  He is sitting up now, couldn't before and he's transferrring from bed to wheelchair with effort.

My "now" concern, as opposed my 'now " concern later, =they are all important to me--Buddy's bowels are empacked-there is a large tumor which lays just beside the anus and is making the opening smaller.  We are trying a suposidory this evening.  Is the bowel empackment made worse by the tumore--its about the size of a golf ball-should I see about getting this tumor taken out of there, or try eminta - it's a rather dirty place, and I'll afraid of infection - are some suppostoris better than other? 

For those who have so graciously followed Buddy through this juorney, he had taken the frist 2 doses of IPI in Philadelphia, tolerated well, but those darn old brain mets returned.  He is on steroids now to reduce the swelling of the brain.  He is on 4mg every6 hours.  He is on the IPPI trial, which has stated they would allow only the low dose decatron for their trial.  His scheduled IPPI treatment woud be this coming Tuesday>

Some of the tumors have gotten smaller, but most have gotten larger.  Most of them are truning purple in color.

Can anyone suggust what we could do ?  The melanoma has met to the lungs, the liver and the brain.

Thanks fo all who reply - It;s been a busy week here in Maryland!

Nancy

 

 

 

 

 

 

 

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Buddy is in rehab now after his fall last Sunday morning at 3AM.  He was in hospital 3 days, transported to rehab center-which is closely  akin to a nursing home to me.  Anyway, his physical therapy is going fine.  He is sitting up now, couldn't before and he's transferrring from bed to wheelchair with effort.

My "now" concern, as opposed my 'now " concern later, =they are all important to me--Buddy's bowels are empacked-there is a large tumor which lays just beside the anus and is making the opening smaller.  We are trying a suposidory this evening.  Is the bowel empackment made worse by the tumore--its about the size of a golf ball-should I see about getting this tumor taken out of there, or try eminta - it's a rather dirty place, and I'll afraid of infection - are some suppostoris better than other? 

For those who have so graciously followed Buddy through this juorney, he had taken the frist 2 doses of IPI in Philadelphia, tolerated well, but those darn old brain mets returned.  He is on steroids now to reduce the swelling of the brain.  He is on 4mg every6 hours.  He is on the IPPI trial, which has stated they would allow only the low dose decatron for their trial.  His scheduled IPPI treatment woud be this coming Tuesday>

Some of the tumors have gotten smaller, but most have gotten larger.  Most of them are truning purple in color.

Can anyone suggust what we could do ?  The melanoma has met to the lungs, the liver and the brain.

Thanks fo all who reply - It;s been a busy week here in Maryland!

Nancy

 

 

 

 

 

 

 

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Meg1414's picture
Replies 8
Last reply 8/27/2010 - 7:33pm

Hi! I just discovered this site today and am excited to find a place where so many people have had similar experiences. But I was hoping that someone could help me out with this - 8 years ago I was on interferon. I did the whole 20 doses and then 11 months on my own routine. But now, I'm thinking about trying to have a baby and can't find any statistics or anything. I don't have an oncologist anymore. (He retired a couple years ago and I just see a dermatologist now.) Has anyone on here gotten pregnant after interferon, or know any information? I don't want to go to a fertility specialist until I've tried for a while, but was hoping someone out there had some good (or bad, I guess) news. :) Wishing you all the best!

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Sherron's picture
Replies 9
Last reply 8/27/2010 - 2:04pm

Hi Everyone,

Well Jim is the one who did not surgery, No WLE, no SNB....he has only done many alternative treatments.  He was diagnosed 07-11-2006 with Nodudlar Melanoma.   He has felt well, actually wonderful, not missed a day of work, and is all about QUALITY OF LIFE, rather than Quanity of Life....2 years ago, he had a local recurrence, and he left it there for 1 year, finally getting it removed once the grandkids started asking questions.  The VA removed it offering scans and wanting to removed the 1 lymph node involved.  He still refused surgery or scans.  Well, the right cervical node is quite large now, is hurting some, with sharp pains and some numbness...could not sleep one night this week.  He appears okay today...He does have a new lump on the right side in the breast area,  Now on the opposite side of the neck I see a lump in the neck....one on his back...and one on the left side appearing some under some bruising area...I am just sick.  Obviously , this is spreading.  He has had 4 years and 1 month wonderful time.  If by some chance I could talk  him into  ANY KIND of systemtic  trreatment that had few side affects, what would it be,??? And I don't even know if anyone would treat him.  We have to go to the VA.  I don't even know if they have any treatments like the other hospitals.  I am grasping....at something , anything, a word from someone.  I don't even know (probably not) if I can talk him into some type of treatment , with few side effects that might buy us a little more time.  I am not asking for him.  He made his decision...I am asking for myself.  I need more time with him.

Thank you,

Take Care,

Sherron, wife to Jim

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Anonymous's picture
Anonymous
Replies 0

Sherron,

Saw a earlier post. I am so sory for your news. I hope things for you & Jim get better. I know this is a difficult time for you. Please keep us posted.

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skysar's picture
Replies 3
Last reply 8/26/2010 - 9:36pm

I am starting the IPI/Temodar trial next week at MDA.  I am grateful for getting into the trial at MDA with Dr. Patrick Hwu as my onc, however, I am feeling anxious the same way I felt prior to IL-2.  I have read many posts that the side effects are somewhat tolerable but I will 60 in a couple of months and have a very sensitive system.  Also I am concerned about the travel back and forth from Atlanta to Houston.  With this first treatment I am going to stay an extra day   in case of side effects.  

I check this board every day for positive comments, which helps me stay on track and focused.  I know there are a few on this board who are enrolled in this trial and would like to hear how they are coping.

 

Sue 

Stage IV 

 

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Hello,

I am new to MRF and the Bulletin Board. I am a stage IV melanma patient with V600E mutation. For the last two years, I have had random subcutaneous lesions that have been removed by surgery but this June CT scans showed lesions in my lungs and back. Until now I have been very active and healthy. I applied for the La Roche study at Providence Cancer Center in Portland Oregon and was randomized to receive RO5185426. I started the drug August 9th and after 10 days on 960 mg/twice a day I had to stop the drug because of a raised rash over 95% of my body with swelling (especially in my face), joint pain and extreme fatigue. I waiting a deciision about whether to restart the drug and at what dosage

I am wondering what others on the study are experiencing.  Molly B

Each moment is precious, live them to the fullest

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Sorry still new and over whelmed and reading these notes is getting me alittle scared of what  is coming. I have not let things get the better me in anything in my life so far but this has got me wondering what my chances really are, and is it  just  battle of prolonged loses. I keep seeing NED and SNB and I don't know what they are. I have had a  Biopsy; a brain scan, a cat scan and a pet scan and all say the cancer is in the neck and has not spread. But with all the reading I have done it is not really true only that it has not shown itself anywhere else. I have no real understanding of this yet and still learning. But I think I might need to leave this board as it does not improve my outlook. I plan on fighting this like I have other things in my life. I almost bled out losing 4.5 pints of blood during the time they found my ulcerative colitis and I was driving my car and was up and walking. This cancer has a fight  but I need more information. What site has answers and not the stats of possible length of life

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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John T's picture
Replies 7
Last reply 8/26/2010 - 4:34pm
Replies by: jag, Julie in SoCal, John T

Hi all

Just though I would check in with a postive update. Since my diagnosis (Stage 3B - Lymph node in leg)  and LND operation back in Feb 2008 , some 5 PET Scans and numerous blood test later - no sign of disease. I went for surgery only option (no interferon or other treatment), and am feeling fit and healthy. Running "mini-iron-man" (running,cycling,swimming) events and enjoying life.  

Best of luck to everyone.

Live Strong

John from Bangkok

 

 

Live strong (Borrowed from my man Lance Armstong!)

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TimG's picture
Replies 7
Last reply 8/26/2010 - 9:45am

I am currently at NIH/ NCI in Bethesda going though TIL.    Friday Aug 27 is the day I get the cells infused and start IL2.  Should complete and be home Sept 9 or so.

 

If anyone will be at NCI let me know maybe we can meet.

 

Tim

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Lauren mom to Jenna's picture
Replies 14
Last reply 8/26/2010 - 9:35am

I am feeling guilty for not posting sooner, but we have been in the heat of it.  Jenna started to get really sick on the ipi trial, and we were thinking that maybe it was a good thing, but her disease continued to grow and spead.  She had bumps coming up everywhere...neck, chest, back, abdomen, even in the muscles of her arms and legs.  We knew we were losing ground quickly.  We had been pursuing MD Anderson for a MEK combo trial (since she responded so well to the MEK) for several months, and finally they were able to get her a spot in the BRAF/MEK trial...and none too soon.  It was difficult just traveling to get there.  We have been here for 2 weeks now and she started treatment one week ago today...Amazing!...her lumps are melting away, and she is feeling much better.  The CT scan that she had last week prior to starting was devastating.  Pretty much the only place she didn't have disease was her spleen.  She will not be scanned again for 2 months, but as we watch her visible disease fade, and she continues to feel better, we are encouraged to believe that internally she is responding well too. 

Thank you to all of you who have been praying for, Jenna.  It has carried us through some real lows to a place where we have hope for healing again. 

We are scheduled to go home tomorrw, and are looking forward to getting some "normalcy". 

Happy in Houston!

Lauren (mom to Jenna)

 

 

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"New Treatment for Advanced Melanoma Shrinks Tumors"

Fron Reuters/MSNBC on 8/25/10

http://www.msnbc.msn.com/id/38854884/ns/health-cancer/#

 

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Knutes Pam's picture
Replies 9
Last reply 8/25/2010 - 10:52pm

Knute's MRI shows the bleed, but no new tumors and no growth in the radiated tumors!  Yesterday new med or combination  gave him relief from the constant headache he's had since admission.  He slept hard for 2 hours and then "performed" in a variety of ways.  Practiced sitting, and the stood with help.  Repeating twice.  He was joking with me and remembered all his visitors while I was at work.

So this is a detour on the road to his next therapy not a dead end.  His mel doctors will push things back a month and we'll see if he is ready!  He has such a fighting spirit, although not a lot of patience so this slow regain of physical control will be challenge enough for both of us.

Pam

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davidroten's picture
Replies 5
Last reply 8/25/2010 - 10:13pm

We have finished our interferon treatments a week ago. The wife is experiencing depression now. She was depressed slightly during the treatments. Has anyone had this problem of extreme depression after the treatments were completed.

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