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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Hi there everyone,

Thank you for taking the time to read my words and hopefully giving me some guidance.  I want to beat this horrible monster, I have so much to live for, and much determination, love and faith to rely upon....  Im just a little lost atm and wondering If I am being realistic in thinking I can beat this. 

My name is Simone, im 34, and live in Melbourne, Australia.  I was first diagnosed stage IIc in 2005 & remained NED until 6 weeks ago when I found a lump under my arm.  It was confirmed mel and scans showed many spots on my liver as well, making me a stage IV suddenly :-(  

I was immediately tested and found positive for the V600E BRAF Mutation and therefore went into the BRIM 3 Phase III Study for patients with this gene to receive R05185426 or Dacarbazine.  Obviously my oncologist, myself and my family were hoping and praying that I got the R05185426....  BUT unfortunately Ive ended up with the Dacarbazine.  I was shattered but had to pull myself together quickly to start chemo. 

Ive now had 2 rounds of chemo, have handled it very well, and the lump under my arm does feel to have shrunk, BUT I am just SOOO SCARED.  I am having a scan done in 2 weeks, and I am dreading it...  What if the results are worse?  Could I still beat this?  Apart from melanoma, I am in excellent health and fitness, and am eating well and exercising.  

I am wondering 'Is this the best treatment for me atm?', "Would i be receiving the same or better treatment options if i was in the US or Europe?'  "What have other patients tried who have been in my situation?'  "Any success stories with Dacarbazine? or other chemo?'

Please help me, Im feeling so alone and frightened :-(

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ValinMtl's picture
Replies 6
Last reply 8/10/2010 - 12:49pm

I have been wondering a lot these days...I am stage iv and, if (I wish upon a star NEVER) I become unable to post or suddenly pass away, can I give my password and user name to my close friend and sistah in life to report back to the group or since the new BBoard has started does that person have to establish her own identity due to guidelines...definitely, would not be used unless I am unable.  Val

Live Laugh Love Nothing is worth more than this day!

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regina Brittingham's picture
Replies 3
Last reply 8/9/2010 - 11:52am

Last week I had treatment at Stanford with CyberKnife for a small tumor in my brain. Things have gone well with some fatigue. Had one 30 min. treatment. Anyone else with experience or treatment?

The Best

Regina

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/9/2010 - 5:45pm
Replies by: Anonymous

Thank you.

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My dad was diagnosed with melanoma 2 years ago.  He's had surgery to remove the initial tumor in chest, 9 months of Interferon, IL2, Crainiotomy, and is now on Ipi.  (He's 59 with no other health problems)  Despite about 5 brain mets, a lung and liver mets, he'd been feeling great.  (walked my sister down the isle on June 25th).  On July 26th he was rushed to the ER where our Neurosurgeon performed an emergency crainiotomy to remove a bleeding brain met.  This saved his life but left him no feeling on his entire right side and unable to speak.  We've been told that he may not ever get this back, however he's been 1 week at an inpatient rehabiliation hospital working with PT, OT and Speech.  He's making some progress, but minimal so far.

The irony in this is our Oncologist called on Friday telling us every other met in his body is responding to the Ipi treament and is shrinking.....

Does anyone have a similar experience with the effects of a bleeding met?  His inability to speak is by far the most frustrating to him.  Hoping that therapy has been successful for others out there....we know recovery will be slow, but I think we need some encouragment that he can regain some of what he lost....

Thanks for any advice/encouraging stories.  We are trying to take this day by day....

 

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Barb's picture
Replies 6
Last reply 8/10/2010 - 2:55pm

I have a question.I'm stage 3 A Melanoma I had chest X-rays over two months ago they found several lesions doctor told me she wasn't concerned they have not changed in the last year?Anyway's my question is I have had a chronic cough for the last two months doctor again said she is not concerned.I was told by several other patients it is a sign of a recurrence or liver cancer?The cough is worse at night.I have tryed every over the counter and precriptions nothing seems to help?   

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Lori C's picture
Replies 7
Last reply 8/10/2010 - 2:37pm

Will goes for his second chemo treatment tomorrow.  His sister is coming in from Massachusetts to visit and will accompany him.  About a week ago, the elevator in his condo buidling broke for a few hours while we were out and he wanted to take the stairs (he has mets in his hips).  That was a big mistake.  The next day and for two days afterwards he had bad hip pain.  Other than that, though, he's been doing pretty well.  I really think almost all of the visible skin lesions are smaller and sort of dried up looking.  Hoping Dose 2 will be even more effective and that the liver mets will really take a big hit from this. 

However, he is depressed.  He's tired and unable to work, and seems to be struggling to enjoy things.  He is normally such a positive person that this is hard to see.  I'm worried all the time and trying hard not to let him see, but I'm sure he realizes that I"m scared.  Still, a little over a month ago, we were given such grim news that I literally expected he might die any day.  He is, from everything I can tell, actually better  and I keep hanging on to hope.  Please send him prayers for tomorrow's chemo treatment.  If the chemo can beat down the tumors sufficiently, he can get into a more targeted treatment.

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MaryBZ's picture
Replies 1
Last reply 8/10/2010 - 12:50pm
Replies by: MaryBZ

I see the $20,000 target was reached and even surpassed!!!yes  To me that is amazing since I think the bracelet campaign began this May  (correct me if I am wrong).  I have passed the link on to family and friends and posted it on my Facebook page as well.  I ask God each day to help me play some part in spreading the word about melanoma.  So even though sending an e-mail and using Facebook are small in the eyes of some, it's what I can do for nowsmiley

MaryBZ

You don't know what your future holds but you know who holds your future!

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ValinMtl's picture
Replies 2
Last reply 8/10/2010 - 7:01pm

Has anybody been on this trial?   I am still waiting for ipi to arrive in Montreal but it's taking so long was wondering about doing this one first which is in Boston. Would appreciate any thoughts on this.  Val

Live Laugh Love Nothing is worth more than this day!

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Rebecca and Bob's picture
Replies 11
Last reply 8/11/2010 - 5:00pm

Hi everyone,

 

The stress of scans is setting in. Bob had delayed his scans because one of our sons hurt his head and had to have staples. He was really due back sooner. It's so tough with these little guys, they keep us so busy.

Any extra prayers, voodoo or zen or whatever you can send our way we could use it. He goes in tomorrow for scans and it will a year since his last surgery.

 

We won't know results until Thursday.

Rebecca

Believe

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Hi there everyone,

Thank you for taking the time to read my words and hopefully giving me some guidance.  I want to beat this horrible monster, I have so much to live for, and much determination, love and faith to rely upon....  Im just a little lost atm and wondering If I am being realistic in thinking I can beat this. 

My name is Simone, im 34, and live in Melbourne, Australia.  I was first diagnosed stage IIc in 2005 & remained NED until 6 weeks ago when I found a lump under my arm.  It was confirmed mel and scans showed many spots on my liver as well, making me a stage IV suddenly :-(  

I was immediately tested and found positive for the V600E BRAF Mutation and therefore went into the BRIM 3 Phase III Study for patients with this gene to receive R05185426 or Dacarbazine.  Obviously my oncologist, myself and my family were hoping and praying that I got the R05185426....  BUT unfortunately Ive ended up with the Dacarbazine.  I was shattered but had to pull myself together quickly to start chemo. 

Ive now had 2 rounds of chemo, have handled it very well, and the lump under my arm does feel to have shrunk, BUT I am just SOOO SCARED.  I am having a scan done in 2 weeks, and I am dreading it...  What if the results are worse?  Could I still beat this?  Apart from melanoma, I am in excellent health and fitness, and am eating well and exercising.  

I am wondering 'Is this the best treatment for me atm?', "Would i be receiving the same or better treatment options if i was in the US or Europe?'  "What have other patients tried who have been in my situation?'  "Any success stories with Dacarbazine? or other chemo?'

Please help me, Im feeling so alone and frightened :-(

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Tracy Chicago's picture
Replies 4
Last reply 12/7/2012 - 12:48pm
Replies by: Anonymous, Sharon in Reno, washoegal

Last night I noticed a mole that had changed significantly in what seems overnight. It has the same characteristics as the melanoma I had removed from my arm. I'm anxiously waiting for my derm to squeeze me in for a biopsy and I can't help but wonder if this mel will one day spread to my lymph nodes in my groin or leg. My primary had a 5% chance of spreading to my lymph nodes and it did spread to my armpit.  Gotta think positive, but it's so hard when you've already been through it before.

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Sherron's picture
Replies 11
Last reply 9/13/2010 - 8:50am

Hi everyone,

My husband (Jim) is the one who has had no surgery other than to remove the original Melanoma and then to remove a local recurrence last year.  He has progressed to Stage III as his cervical lymph node is quite large about 1 1/2 inches, round like a ball sticking out on his neck.  He is only doing alternative and herbal.  He did not do the WLE or the SNB...As of yesterday, he has a pain on the same side as the Melanoma on his right side, going into the stomach area.  He thought he might have pulled a muscle as he has been doing work around the house...then decided it was just probably gas or something like that.  He did nothing yesterday, but sit it the chair.  I came home from work, he was still in pain when he moved, even his leg .., I put one of those icey hots things on it and barely put pressure and he acted like it really hurt.  I am wondering could this be something else, or am I just being alarmed because he is not doing any other treatment...?  My mind is racing.  Any input would help me, please.  I know most of you are doing regular treatment, but my husband's decision was to only do natural...He is still a fighter and a warrior, just fighting a different way.     Any input would be greatly appreciated.  Thank you so much.

Take Care,

Sherron, wife to Jim

 

 

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Linda J's picture
Replies 6
Last reply 8/12/2010 - 6:59pm

It has been about 5 years since I have used this site - a lot has changed. 

Currently I am upset and confused and would like some feedback from this community to help ease my heart/mind.

My initial MM occurred in my upper back in 2001.  I had a local met in the skin just below the initial site and 1 lymph  node with a very small MM.  I had an axilla dissection and then about 6 years later I had a very small subcutanious lump taken out of that same dissection site that was also MM.  I had radiation and nothing has happened to that axilla since - I call it my perfect armpit since no hair grows there anymore :-)

About 4 months ago I suddenly had a lot of pain in my hip/buttock - to the point that I couldn't really sit without discomfort.  It felt like I had a muscle knot in that area.  The pain went away and then it came back again about a month later.  Again, the pain went away.  Then at the beginning of June I felt an enlarged lymph node in my groin - it popped up suddenly and was very painful.  I went to a GP who put me on anti-biotics.  He left the "muscle knot" on my hip and thought it could be a lipoma so he sent me for an ultrasound.  The ultrasound said that the "knot" was some kind of vascular tumor. 
My oncologist thought the "tumor" was also just a lipoma so he sent me to see a surgeon.  By the time I got to the surgeon, the skin above the "tumor" had become very inflammed, red, swollen and very very sore.  It was like a band of pain that went from my hip to the lymph nodes in my groin. 
The surgeon thought that it looked very much like an infection of some kind.  He put me on Keflex which helped with the pain and the redness has gone down a bit and the lymph node is no longer sore.
In the mean time, I had a regular appointment yesterday with the oncology surgeon who took out that little lump in 2008. He looked at the lump on my hip and told me that it is probably melanoma - which he said is likely a met from the very first one on my back in 2001!!!!!!  WHAT!?  He did a needle biopsy and I have an MRI on Friday and then get the results on Tuesday.

I am very confused.  Has anyone else every had a MM that got inflammed like an infection and responded to antibiotics?  How could my first MM travel down to my left butt/hip without leaving anyother pieces in other pleaces - all my scans and blood work came back normal late June.  How could three other doctors who all knew my history, not think that this lump is melanoma.  I don't know what to think.  I am going crazy.  It if is MM, it is very big compared to the other ones I have had, and now there is lymph node involvement.  I don't know what to do.  The two different surgeons seemed to both be so sure about what they think it is, but they both think it is something different. 

I am so upset.  Please send me your thoughts. 

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katd's picture
Replies 1
Last reply 8/5/2013 - 1:11am
Replies by: JenniferKincaid

Any one out there using interferon alpha treatment. Dr are telling me I cannot have another Pet/Ct Scan until I have gone thorugh the treatment (which I have 9 1/2 months left) and then wait 1 month.

katd

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