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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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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CaptAaron's picture
Replies 22
Last reply 11/19/2010 - 12:11pm

Good evening fellow warriors.  Just wanted to introduce myself to the board and see if anyone can shed some light on a treatment option I'm facing.  I'm a 31 year old father of 2 boys.  I'm active duty Air Force stationed at NASA's Johnson Space Center in Houston, TX and I'm a marathon runner.  I was diagnosed in July of this year (2010) with a 1.15mm spot on my upper left back.  A WLE and SNB later revealed clear margins and one of three lymph nodes removed showing a microscopic level of melanoma present (<10cells in a 1cm diameter sample according to the pathology report).  I then went on to get additional surgery at MD Anderson.  The surgeon removed 22 additional lymph nodes on my left side and all were clear.  CT/PET/MRI's all clear of any metastatic disease.  Since my diagnosis I've made incredible lifestyle changes to include going vegetarian except for fish occasionally, cut out all carbonated beverages, caffeine, alcohol, diary and most anything that isn't organic.

 

My medical oncologist recommended two potential paths for treatment.  One was a pegylated (sp) Interferon trail which was dependent on whether I had a specific genetic tissue type.  Blood tests revealed that I did not, and therefore the other treatment recommended was the standard Interferon regimin of 4 weeks HD and 11 months self injections.  I completed the 4 weeks of IV treatment not last Friday, but the Friday before.  I mus say that it was quite miserable most of the time and the depression effects hit me hard.  I've been trying to work as much as possible, but I'm also getting the "chemo brain" effects and dealing with that at NASA is not the best thing to have happen either.  Headaches, depression, fatigue, bad tasting food are all very real side effects for me, and I'm not liking the idea of continuing this for 11 months.  My oncologist is definitely leaving the option up to me, and doing a good job of explaining the minimal benefits of Interferon to me, stressing that it is a patient choice.

 

So my question is kind of an obvious one...what do you all think would best in this situation?  I'm all for fighting cancer and fighting hard, but the costs have to at least equal the benefits, and it doesn't seem like there's strong evidence out there to help that case.  As I sit here and type this even my head is throbbing and I feel like melting into my chair from exhaustion.  I like the idea of counting on the 4 weeks of IV treatment to be "good enough" and the 11 months of additional treatment to be the "enemy of good enough"...but is that the case?  I know it's a dilema that's been debated on this forum before, but I thought I'd re-introduce it, along with myself.  Thank you for your inputs and your time fellow warriors.--Aaron

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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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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ChristineL's picture
Replies 3
Last reply 11/19/2010 - 8:55am

I've heard a lot of people discuss "watch and wait" and I just wanted to mention that I think it should be changed to "watch and live."  I'm not waiting for anything!

Not sure if this is appropriate for this board, but hey, tough.

Watching and living,

ChristineL

Fight like hell

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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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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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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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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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NicOz's picture
Replies 9
Last reply 11/19/2010 - 12:24am

Love, love and adore my neurosurgeon. Was in hospital for 24 hours, from peri-op to discharge. That beautiful man removed a tumour (unfortunately it had to be done via a new hole in the head, but it's all good) and managed to stabilise my head without a single pin hole :) yay for me! It was termed a "mini-craniotomy". Sounds insignificant... and I like that :D

Of course, it's the worst haircut I've ever had, but eyebrows remained even, so one can't complain too loudly, eh? They sliced the temporalis muscle to get in there, and I HATE that, but it's ok. Getting less sore every day. Most importantly, it seems I am right to roll for G's dance recital in a couple of weeks :D

I had a mixed bag of results this time around. I have had a couple decrease in size, but have a few (3?) new mets, one of which is close to the thalamus and will be back to have SRS on that fairly soon so I'm told. It's causing a little bit of left sided weakness and numbness, but is surely do-able at the moment. Physio told me it is a little weaker than the right side, but still very strong, so that's ok.

They are still pushing full steam ahead to treat me, and as long as they're doing that, I am one very happy camper!

Life is good

xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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molly's picture
Replies 7
Last reply 11/18/2010 - 11:36pm
Replies by: JuleFL, ValinMtl, Sharyn, Tim--MRF, lhaley, King, Anonymous

Sherron ask that I post for her and let you know that Jim was admitted to the VA Hospital yesterday and received blood transfusions. Jim is very weak and Sherron is not sure when he will be allowed to go home. She is waiting for the doctor to make his rounds this morning. The doctors told Jim he will need transfusions every 2-3 weeks. Sherron ask that you please keep them in your prayers.  

Thank you for your care, concern, and support.

molly

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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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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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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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