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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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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betsyca's picture
Replies 4
Last reply 8/11/2010 - 10:26pm
Replies by: betsyca, Anonymous, Nancy

The doctor noticed a spot on Ron's back at his checkup.  It is a raised bump, no color, but with a ring a around it that appears to have no pigment.  I wasn't concerned, as there has been so many weird skin things during interferon.  Does this sound like anything familiar here?

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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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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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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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Jydnew's picture
Replies 4
Last reply 8/10/2010 - 1:35pm

Hi,

Wanting to share the good news with those of you who might be just starting this scary journey with melanoma.  My husband had his semi-annual onco appointment yesterday and got the fantastic news that he remans NED.  Still seeing a little hypodensity on his liver, but it's been stable for at least 2 years now, so not a concern.

He was diagnosed at age 26 at stage iiia, 1.3mm depth on his right tricep.  Surgery to remove the lesion and an SNB revealing micromets, followed by surgery to remove all the nodes in the basin.  He has been NED ever since, with annual scans, semi-annual bloodwork and onc visits.

He is now 34 and has accomplished so much in life since his diagnosis, including the births of our children (one passed away, and the other just turned 1!), buying our dream house, earning a teaching certificate and a master's degree, and finding rewarding employment as a science teacher.  Life has been good to us, even through the toughest times...

Best to you all,

Wendy

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

Thank you.

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JenM's picture
Replies 2
Last reply 8/9/2010 - 4:51pm

Hi,

I posted last week and was hoping to get a few more replies.  Posted above and James from Sydney suggested that I post with sorafenib in the subject--that it might attract others who know it by that name to respond.

I started the drug last Friday and wanted to know what side effects people experienced?  What helped?  If you had a positive response, how long did it take to see that response?

Thanks again,

Jen

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Jim in Denver's picture
Replies 7
Last reply 8/9/2010 - 1:09pm

 I have been meaning to post, but have had a busy July with family.  I have not posted since late May, I think.  I have waited until I have news to report, so here it is!

As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since.  Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days,  My Onc there is Dr. Wen Jen Hwu.  I am extremely impressed with MDA - a large operation, but very personal and caring.  Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm).  Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan.  MRI of brain also negative.  She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted.  She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment.  Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.

So Tuesday I will travel to Houston with my wife for two days to begin treatment.  The Ipi part is "high dose" - 10mg/kg.  The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle.  The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months.  Scans are done at 6 and 12 weeks.  Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule.  Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness.  The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3).  This is the purpose of this study.  High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy.  The side effects to both treatments should be manageable, but the list of possible ones is long.  I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.

My kids are at camp this two weeks, so no family issues with my first treatment.  My wife will be with me for the first treatment, and she has arranged family leave.  Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation.  I emailed them a couple of weeks before that to let them know about my diagnosis.  They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease.  My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.  

So that is my story for the recent past, in a nutshell.  I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March.  Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.

In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board.  You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information.  I will write when I can, but may resort primarily to posting here, depending on my energy level this week.  Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.

 

Many Thanks,

Jim in Denver

 

 

 

 

 

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ipi in DC's picture
Replies 6
Last reply 8/9/2010 - 12:08pm

Hi JIm,

Just checking in on you and how your first days are going, I meet with everybody today and start treatment on the trial tomorrow.

David

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

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