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, I haven't posted or responded to any posts for a long time.  Derek has been on a trial since he progressed to stage IV, randomied into the chemo arm for a right hilar node.  We have been concerned about two spots on his ribs that are now nothing, although he tested negative for BRAF he is positive for NRAS, and a third opinion from a cardiothorastic surgeon saysthe node is resectable with 20% complications.  We also should find out whether the DTIC is doing anything in a week and a half.

I returned to teaching in September after mat leave with my second child. We have a 3 and half year old and an 18 month old.  I just found out I was pregnant again.  Not to be too speciifc but it is diifciutl to see hopw this happened, since the spring Derek has had surgery and treatment and nerve problems so there wasn't much chance to get pregnant and I was on the pill, but here we are. 

We are trying to decide what to do and I need some advice.  Derek has said he is not sure he can physically handle another baby and that emotional it is so difficult to look at the two we have now and know there is a very good chance he may not see them grow up let alone to rbing another into the world he may not know and of course we are both concerned, him more than me about how 1 parent can bring up 3 children.  Financially we are good, our parents live in town but are in thier 60s already.  I know this is our decision but I am having such difficulty and needed to hear what other patients and caregivers might have to say. 

 

\Thank-you for responding

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Melanoma Mom's picture
Replies 15
Last reply 11/19/2010 - 8:05pm

Our 14 year old received the wonderful news that SNB was clear! They are suggesting the year of Interferon. I know from limited reading that this is not foolproof by any means, but is most likely better than the "wait and see" approach. Since he is considered NED, I assume there is no other options/trials out there that I should be looking into at this time? I'm afraid some trails will disqualify him right off the bat because of his age. 

Any thoughts and suggestions are greatly appreciated! 

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Elizabeth A's picture
Replies 2
Last reply 11/19/2010 - 6:45pm

I would like to ask your advice about my mom.  She was diagnosed 3 weeks ago stage 4 melanoma.  In 1985 (approx.) she had a mole removed from the top of her foot by her dermatologist.  When the path report came back as melanoma, she was referred to a surgeon for follow up.  He took additional tissue which came back clean.  “No additional treatment necessary.”  She still sees the same dermatologist once a year for a full body check.

 

About 6 months ago my mom started feeling unwell.  She had unexplained fevers, loss of appetite and weight loss and indigestion.  A bladder infection seemed to explain the fevers, and an increase in medication took care of the indigestion.  She saw her oncologist for a routine check up (2001 and 2007 breast cancer, early detection, radiation and irimidex (sp.) to remove estrogen from her body) in July.  He examined her and ordered a bone density test (she is shrinking from the irrimidex.)

 

Three weeks ago I took her to the emergency room for abdominal pain and vomiting.  A CT scan revealed enlarged lymph nodes in her peritoneum.  They drew blood for a CA 125, ordered a PET scan and referred her back to her oncologist. The CA 125 was normal, he said she more than likely had lymphoma which is treatable and ordered a biopsy on an enlarged lymph node in her neck.  The next thing we know he is telling us that it is melanoma which does not have reliable treatments.  (My husband died 10 yrs ago from kidney cancer (2 rounds of IL-2 and a mini stem cell transplant at the NIH) so I know a little bit about cancer that does not respond well to chemo.)

 

He recommended dacarbazine followed by ipilimumab if the dacarbazine fails her.  I did some brief research on clinical trials because I remembered that you can disqualify yourself by having been previously treated. There is a trial at the U of Washington/Fred Hutch (we are in Seattle) that randomizes between dacarbazine and RO5185426 a drug that has had some success if you have the V600E BRAF mutation, but you can’t have previous treatment.   The oncologist said it would take 3 weeks to have her tissue tested and that she should not postpone treatment    After agonizing we decided to start the dacarbazine.  We did request that her tissue be tested for the BRAF mutation and at least one other mutation.  My mom started the dacarbazine a week ago and is tolerating it.  

 

My mom will be 80 in January.  She is very active, sits on several non-profit boards and retired last year from an appointed position with the state.  She has always done exactly what the doctor says to do.  (I almost never do what the first doctor says and have always gone for at least one other opinion.)  My mom agreed that I would do some research.  She truly believes this treatment will work.  I worry because the stats are not great, on the other hand it does stabilize or shrink some of the time, and she believes in it which is worth something.

 

I am unsure as to how I should proceed.  We really have no idea what to expect (and maybe don’t want to know) as to how sick she really is.  There are multiple enlarged lymph nodes.  I would like her to at least see Dr. Margolin at UW, but she feels like that would be admitting that this treatment will not work.  She did tell me that she would be happy if she still had 2 years.  I like her oncologist, he is kind and patient and responsive, but I don’t really think he knows very much about melanoma.  My mom mentioned to him that there was some darkening on her foot at the site of her primary and he said that it was nothing.  I noticed there is a patient on this bulletin board who had a long remission and that her darkening was something.  I am pretty sure that I could sit down with my mom and explain to her that there are promising treatments for her disease in clinical trial and that getting a second opinion does not mean you are giving up on the conventional treatment.  I am trying to respect her choices but I am realizing that if I shelter her from the statistics then she is making decisions with incomplete information.  I would feel so much better if I could put this in the hands of a doctor that sees possibilities.  I am afraid that she trusts a system that is very broken, i.e., you have to fail the approved drug in order to get the better drug that is awaiting approval.  That’s great if you have lots of time and don’t mind being sick from the chemo.  I am afraid that I might encourage her down the wrong path and then have to live with that.  Any ideas?

 

Elizabeth

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Becky's picture
Replies 8
Last reply 11/19/2010 - 7:56am

Whew!! Ben's latest Pet Scan was a-ok!

As a recap..dx July 09 just before his 21st birthday, melanoma on tip of tongue. WLE and SNB showed it had spread to one node. Right neck dissection, 8/09 then a year of interferon. July's pet showed 3 suspicious spots which the doctor today said had either disappeard or diminished enought that were not significant.

And I am one relieved mom!

Thanks as always for the amazing support here

Becky

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churchwelldana's picture
Replies 4
Last reply 11/19/2010 - 8:17am

So far I am stage 3a. I had my PET/CT scan today and will go back to the doctor tomorrow to discuss the results. Hopefully all will be clear and I will soon start Interferon. I hear that the side effects can be very bad. I know that everyone handles the treatments differently but I would like some advice about working while taking the treatments. I am a 4th grade teacher and I leave feeling tired every day even when I feel healthy! Other than my own ability to be able to push through I am concerned about the children in my class. I want them to have an effective teacher, not sure if that will be possible while on this drug. Any advice would be greatly appreciated!

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dherndon's picture
Replies 2
Last reply 11/24/2010 - 1:22pm
Replies by: vickirs, Anonymous

Any have any thought with thesewo treatments

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dherndon's picture
Replies 0

Has anyone been onthe MEK Trail

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davekarrie's picture
Replies 2
Last reply 11/18/2010 - 7:55pm
Replies by: ChristineL, lhaley

I was diagnosed last Fri with Breslow depth 1.5 mm and Clarks level IV. I have my path report and it says on there that I am a stage Ib, t2a so far. Does anyone know exactly what that means.  I have mitosis of 4/mm2, no ulceration, no regression, no tumor infiltrating lymphocytes. it does say radial and vertical margins negative, so that sounds good I think.  Just hate waiting and want to get the WLE and SLNB next Fri most likely. Do folks think they will do the SLNB and how long of a surgery in my case?  Thanks for any help/insight.

Live life to the fullest and enjoy each day!

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MaryMary73's picture
Replies 13
Last reply 11/18/2010 - 10:08pm

Saw the surgeon this morning. Good news!!!!!!!!!!! Melanoma-free!!!!!! He said the sample contained no microscopic abnormal / melanoma cells. I even asked to read the report....jusssssssssssst in case. I'm at home now...sitting on my couch...and exhaling for the first time since Nov 2nd.

Thank you all for your kind and thoughtful prayers.

smiley

The only real wisdom is knowing you know nothing -Socrates

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Melanoma Mom's picture
Replies 6
Last reply 11/19/2010 - 10:54am

Today we travel to Dana-Farber to find out our 14 year old son's staging and treatment suggestions. It has been a long road since September 1 getting to this day. Praying for good news! Be sending good vibes at 1:45pm!

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Melanoma Mom's picture
Replies 9
Last reply 11/19/2010 - 7:43am

Today we travel to Dana-Farber to find out our 14 year old son's staging and treatment suggestions. It has been a long road since September 1 getting to this day. Praying for good news! Be sending good vibes at 1:45pm!

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Dynasysman's picture
Replies 6
Last reply 11/18/2010 - 10:26pm

Going to see ONC SURG for first time to discuss left neck posterior dissection for T2 N1 M0 lymph node removed last Thursday. Reviewd pTh report to be ready -- report reads too much like textbook mucosal melanoma for my comfort.

Anyone have any questions I should be sure to cover tomorrow? Articles/websites to read? Good non-denominational prayers?

Thanks.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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King's picture
Replies 48
Last reply 3/10/2011 - 5:15am

Sometimes, one hesitates to post the great news when others are deep in battle.  My reason for posting is to give others hope that is so essential in battling melanoma.

I was at Moffitt today to get the results of the CT of the neck, thorax, abdomen, pelvis and the MRI of the brain that I had last week.  There is no evidence of melanoma!  I had advanced to Stage IV in 2005 with liver metastasis.  I had a major recurrence in 2008 with a peri-pancreatic tumor and a sub q.  I've not had a recurrence since that time.  I think most of my success has been because of my very aggressive surgeon but who knows?  So many factors probably play into it.

I wish everyone could be as fortunate as I have been.  I thank everyone on this Board for their support and friendship over the years.  There are times that I would have felt so alone without the people on this Board.

Stay Strong
King/Kathie

Stage III 2004 Unknown primary

Groin Lymph Node Dissection 2004

Interferon 2004-2005

Liver mets 2005 (4.5 cm tumor)

Liver resection (70% of liver removed) and Gall Bladder removed 2005

GM-CSF   Phase II Clinical Trial 2005-2006

Peri-pancreatic tumor, sub q on buttock/hip 2008

Extensive surgery to remove both 2008

Have been NED ever since

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lhaley's picture
Replies 17
Last reply 11/18/2010 - 5:27pm

We always tell people that just because you have a new symptom it doesn't mean it's melanoma. Then it happens to you and automatically mel is the first thing I thought about.  I've been having headaches, lightheadedness, memory issues ect.  I did have a traumatic brain injury about 6 months ago but it had gotten better, then went back to issues again.  But, the MRI I had yesterday was clear!! 

I didn't realize how hard it was to admit to the oncologist that I was having problems. Denial was easier to deal with!

By the way, don't ever put a paper shredder on a top shelf. The motors do fall off when reaching to get it down!!  Even though I still don't feel great I am greatly relieved!

Linda

Stage IV  NED 1 month  PET scan Dec. 7th

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MaryMary73's picture
Replies 11
Last reply 11/21/2010 - 11:32pm

I had my excision done on Nov 4th. Stitches come off tomorrow at 8:15am EST and my plastic surgeon will let me know if my margins were clear (is that what it's called?). I'm hoping and praying. The only thing keeping me from going insane is that my tumour was kinda small. On the Breslow scale, it was 0.39mm and very slow growing.

I have to say that this has been ONE HECKUVA journey. From thinking "Melanoma? C'mon!! Not me...I am not a sun worshipper!" to "Melanoma? What the hell are you talking about??? You must be joking!!! How the f**k did I get melanoma???".

In my opinion, skin cancer in general is promoted as being caused by the sun so whoever doesn't sit and bake for hours on end is basically immune to this crap (pardon my language).  At least that's what I thought. Boy was I wrong. I guess it's like any other shitty (excuse my language again) cancer or disease...how many people die from lung cancer that never smoked a day in their life...how many people die from cardiac arrest even though they took care of their bodies, ate well, and exercised on a regular basis...how many people die from liver disease yet were not alcoholics...

What really grinds my gears is that it is so easily treated if caught early yet so many people ignore that "ugly duckling" mole...or like me, didn't even know the damn thing was there. Us women are always told to check for lumps in our boobs as soon as we hit our mid-twenties and to make sure we get our Pap smears done once yearly as soon as we begin having sex yet no one bothers to tell us to check our beauty marks/moles. Men are told to get their prostates checked as soon as they hit 40...no one bothers to tell them to check their beauty marks/moles.

Everyone is told to monitor their blood pressure. Everyone is told to eat healthy and exercise regularly. Don't smoke. Don't drink. Eat organic. Yet we are NOT told to always keep a watchful eye on the largest organ we own. We make sure we pluck it, wax it, shave it, laser it, Botox it, liposuction it, moisturize it. Meanwhile, a tiny little abnormal mole will throw a monkey wrench into our lives and send us on a journey that we really never thought we'd ever have to face. At least I never thought so.

The only real wisdom is knowing you know nothing -Socrates

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