MPIP: Melanoma Patients Information Page

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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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shaz's picture
Replies 9
Last reply 8/29/2010 - 10:26am
Replies by: bcforce, Rocklove, vickirs, James from Sydney, Anonymous, molly

Started feeling slight pains in my lower back about 2 months ago and had been feeling slightly nauseous for some time too, explained both away with stress and studying too hard for my final exams. I then started having really bad pains in my shoulder and couldn't sleep at night. Long and short of it (and lots of poking and tests later) I have metastases to my liver, lungs and bones.

For the last 4 years it has been lesions and mets 'just in the skin', I never imagined it would come to this. I've started six rounds of dacarbazine, each round takes place once every three weeks and i've also started a bone strenthening treatment, zometa, which will be given indefinitely.

Anybody have any positive stories about recovery from this extent of mets? i would really love to hear some.... there are so much negative stories out there.

Could you also please advise about the treatment I'm on? Is this enough?

Thank you so much!

 

 

 

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pam from jersey's picture
Replies 13
Last reply 8/29/2010 - 10:22am

Hi All,

I've just been diagnosed with Stage IIIa from Sloan Kettering in NYC - I had a mole on my upper left back that came back 1.25mm - they did a wide excision surgery and a sentinal lymph node biopsy. 

 

Here's my path results:

 

DIAGNOSIS:

 

1.  Left upper back wide excision

- cicatrix

-no melanoma seen

 

2.  left axillary sentinel lymph node #1:

- metastatic melanoma in one lymph node

Note:  No extension into extranodal soft tissue is seen

 

3.  sentinel node #2 left axilla

one lymph node, negative for melanoma on levels and immunostains for s100p and melan - a

 

I met with Oncologist who said he will see me on September 27th - he recommended a CT scan which I had this past Saturday and I meet with the surgeon tomorrow to go over the results and to have pre-admission testing done  - He said he will see me back on the 27th of September to discuss further options (wait and see approach, participating in some type of protocol prophylactically (sp?)

I don't know..... everyone I talk to is wondering why am I not put on some type of chemo, or intereferon, or WHATEVER  -  Is it because the 2nd node was clean that it's not a priority???   I just don't know what to think - it's so depressing some things you read on the internet  -  

Can I sleep good tonight before getting my CT results?   HELP!!!   

p.s.  I'm 45 and in great health otherwise

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esposir2's picture
Replies 0

Hello Has anyone tried this new trial drug

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Anonymous's picture
Anonymous
Replies 12
Last reply 8/28/2010 - 8:04pm
Replies by: paul, bcl, JoanR, ValinMtl, LizzieWA, Anonymous

My mom has been diagnosed with Stage 3C melanoma (6 lymph nodes affected, one extracapsular extension).  She had surgery, lymph node removal and radiation on the lymphs.  The original site never healed from the surgery (6 mos + ago).  Recently, little black spots started popping up between the original site and the lymph nodes.  At least 18 of them. We learned they are melanoma.  What does this mean for her? 

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Jan in OC's picture
Replies 8
Last reply 8/28/2010 - 1:39pm

My husband  has been on Hoffman/Roche BRAF trial at UCLA since early Feb '10. After the first month, we started seeing red "bumps/splotches" that would appear on his arms or legs, they would swell up, be sore and itchy, then disappear a few days later.  Doc said it was a rare side effect of the drug. No worries!  But, since this weekend, those spots have gotten very large and developed blisters on them. Dirk was very uncomfortable.  I emailed the Doc  this morning and he said to stop the drug, has scheduled a CT scan and visit for Wed.  Anyone else experience this??? Just a little worried cause he has had a bad week or two, really tired and in pain.  He says all the "lumps" on and under his skin are hard and barking at him. 

Jan (Dirk's wife)

stage IV,  

WLE in Aug'09 arm and groin lymph nodes

Nov '09 new external mel on right torso 

Dec '09 mets in liver, lungs, kidney, R shoulder bone

laughter is the best medicine

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Nancy's picture
Replies 5
Last reply 8/28/2010 - 12:50pm
Replies by: Anonymous, Kevin from Atlanta, Nancy, lhaley

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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himynameiskevin's picture
Replies 1
Last reply 8/28/2010 - 10:49am
Replies by: dian in spokane

Hello everyone. Just an update. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. Scared? Yes, I'm kind of nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

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lovingwifedeb's picture
Replies 20
Last reply 8/28/2010 - 10:17am

My husband, Bob thought the song from The Gambler, from Kenny Rogers was appropriate after his doctor's visit on Friday so I will work with him on this one hard as it might be. Betting is all about percentages, so if you are a betting man/woman and the stakes are high it just might be an all or nothing bet for you if your life is involved. This is how it went down for Bob with the melanoma specialist in the Portland area on Friday.

 

Facts:

• Bob has melanoma stage 3, it's been 30 days after surgery

• For most people with stage 3, this gives you odds of 50/50 of getting melanoma again of a more life threatening development within 5 years which turns into stage 4.

• Because of the size of Bob's tumor which was 2-3 inches, which was taken during surgery, his odds have now become 70-30 of getting melanoma again within 5 years and will threaten his life, stage 4.

• Treatment available for Bob:

1. Interferon: treatment for 1 year, makes you sick like flu, 5% works

2. Vaccine: made with protein from Bob's tumor, builds up his immunity so his body recognizes melanoma as an enemy and kills it. Clinical Trial, 2 people on, 1 person off, – NO GUARANTEE

3. Do nothing and wait

 

Reality Check:

The mean probability of death by car accident for United States residents is 1.49%. Source(s) 2005

 

Choices...

So, it was an emotional charged Friday when we met after work, talking about his doctor's appointment. It was hard seeing Bob realize his future in numbers for the first time in these many weeks. As much as I wanted to be there for that doctor's appointment when Bob told me that he had broken down for the first hearing about his uncertain future I knew reality had set in . Still trying to grasp the facts of this disease, the way it works against you fighting to take your life away and everything you have worked for this became no longer impersonal.

It was the first time I didn't know what to say to Bob. So far I have tried to be there for him and try to feel what he must be thinking and feeling but I guess there comes a time when a person has to walk that walk alone. It's a head on collision and I certainly was not ready for it so I know Bob was not either. So, is the glass half empty or is it half full? Which side of the door are we standing in? 70/30 Is this an all or nothing bet?

If you believe in religion you get a free pass and turn it over to a God to share your burden and let it be taken from your shoulders so you can forget about it.

But... in my heart and in my mind it's not that simple. This earth is powerful in its clutches and for those who remain here and we can't help but feel forsaken. Love I feel is a powerful gift and my only hope is that whatever time Bob and I have together our marriage stays strong and true during this trial and that our love brings a brighter light into who are for each other.

Here's my promise to you, Bob. I will try to not take you for granted after today, and to take time out and enjoy our lives in whatever way possible within our means. I am behind you100% and that you can count on. If you had to bet on anything in your life it would be that I love you with all my heart and soul. I will support you in whatever decision you make when it comes to your health care. It is your life we are talking about but it is your "Quality of Life" I am reminding you about too. Selfish as I might get at times I do want you with me but I also want you to be happy here.

Follow our family blog site:

http://redesign08.blogspot.com/

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/28/2010 - 8:29am
Replies by: Fen, Janet2

Just wondering if anyone else has encountered these same type of feelings.  Before being diagnosed with Stage 3 Melanoma I moved across the country away from all of my family and friends with my new husband.  Being in a new environment, not feeling quite myself, I have found it so difficult to make friends my age (I'm 29).  I find that many women my age are dealing with such different things like starting their families, etc.  Although I've been NED for a little over a year now, and am finished with my interferon treatments (I did 4 and 1/2 months,) I'm definitely still reeling from everything that I've been through.  Although I believe that I'm quite positive most of the time, I've had a few breakdowns with new friends, and find them running the other way.  Maybe my situation reminds others how fragile life is?  Maybe others don't realize how serious melanoma is and think I'm being a drama queen?  I've never had difficulty making friends before, and now is when I need them the most.  Anyone else experienced anything like this? 

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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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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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