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.

Expand/ Collapse Topic
 
Replies By
View Topic
rj's picture
Replies 7
Last reply 11/21/2010 - 3:18am
Replies by: rj, djpayn, lhaley, Jim in Denver, TAC, Janner, Anonymous

Ron has had a 3 mm spot on his lung ever since the original scan in March of 2009.  We were told at the beginning (not by our melanoma specialists) that it was NOT melanoma.  At his follow up appt with the surgeon last week, one of the doctors said it COULD be; hence the watching.  My question is this----wouldn’t it show uptake on the scans if it were melanoma, and can melanoma just sit without growing for a long time?  If anyone has had similar circumstances, I’d appreciate information.  Thanks--Betsy 

Login or register to post replies.

davekarrie's picture
Replies 1
Last reply 11/20/2010 - 11:00pm
Replies by: kellie1979

After reading my path report a bit more, the initial stage is set at Ib, T2a with no info yet on N or M.  Therefore, there is a good chance that the melanoma did not spread, right?   I go to mayo clinic next week for consult on 24th and surgery on 26th.  I do have a few more suspicous moles they will need to look at though, but the more I read about stage I the better I feel.  My path report does mention occasional mitosis, so not sure what that means. I am also at Breslow depth 1.5mm and clarks 4. thanks.

Live life to the fullest and enjoy each day!

Login or register to post replies.

Linda/Kentucky's picture
Replies 3
Last reply 11/20/2010 - 9:02pm

My husband had his genetic profiling done about 3 weeks ago and we finally received the results.  He seems to carry a mutation gene of GNAQ.   This mutation is generally seen in uveal melanoma??? and we are not positive with his primary so could be.  Anybody have any ideas about this?   I am  not familiar with this at all I have looked up some info. but not alot to find.  We will have more answers Monday when we go for a follow-up.  I pray there is something we can try because we already tried high dose IL-2 no response, finished the Ipi trial in Oct. with progression at 12 wks. and final scans showed major progression.  Basically we were told Taxol/Carbo chemo but not sure it this is a choice for us. 

 

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Login or register to post replies.

King's picture
Replies 1
Last reply 11/20/2010 - 7:47pm
Replies by: King

Hi,

I have Tim's email address but do not have a phone number to contact him this weekend.  A very good Stage IV melanoma friend needs to contact him.  If anyone feels at liberty to share his phone number with me, I would appreciate an email.  Or if you see this, Tim, the person's husband was going to email you, so would you please check your email address for this site or email me?

 

Thanks!

 

Melanoma advances 24/7.

 

Stay Strong
King

ktreble1@gmail.com

Login or register to post replies.

churchwelldana's picture
Replies 4
Last reply 11/20/2010 - 2:11pm

Just got the results today from my PET/CT scans....All Clear! I'm so relieved! Now I will have the remaining lymph nodes removed from my groin and begin treatment soon after. I know things won't be easy but It's a relief to finally receive some good news!

Login or register to post replies.

Yet another reason for me to hate the FDA, as if I needed one.  People have been taking Darvon & Darvocet for fifty freakin years and NOW oh it's suddenly too dangerous for patients to be allowed to make an informed decision on whether or not to take it.  I have no heart problems.  My heart is regularly evaluated by my doctors.  I should be able to decide if the pain control benefit I get is worth the small risk of heart problems.  But no.  The damn FDA has taken that choice out of my hands.

I don't like narcotic pain killers.  They make me throw up like crazy and give me horrible painful constipation.  And they can easily knock me out & make me loopy.  I like Darvon because it's not that strong.  Sure I still have to take anti-nas. meds first but that's okay.  As long as it works.  Which it does.  Sure I have other stuff for when the pain is worse and I want / need to be knocked out.  But how can it be preferable for me to have to switch to Vicoden or Oxycontin - much stronger drugs?

Damn idiots.  grrrrrr

I am having pain issues from my skeletal mets.  I probably need to schedule a pain management appt. as well as my planned home health / physical therapy consult.  I just don't want to end up in a situation where my choices are operate at high pain level every day or be zonked out on pain meds all the time.

I'm up for suggestions.  I have not tried Fentynol patches but I think that's next up on deck.  Yes, I have tried smoking pot and eating pot candy.  The smoking is pretty helpful but I'm not a smoker so I don't enjoy the process (and it's illegal here in TX and I don't want my kids to know yadda yadda yadda).  The candy was kind of a bust - definitely helped some when my vomitting was the main problem, but tastes horrible and smells like tree in a BIG way.

I already take 1200mg of Neurontin for my leg / nerve pain when I did the lymph node dissection.

So I'm looking for something fairly mild but stronger than OTC, preferrably will still allow me to do my normal daily stuff.  Nothing that will knock me on my butt.

whew - enjoyed the rant!

Love,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

Login or register to post replies.

PeterO's picture
Replies 1
Last reply 11/20/2010 - 9:36am
Replies by: Linda/Kentucky

The husband of a dear friend of my wife's has been diagnosed with multiple myeloma and is receiving treatment. John is in his 50s and is otherwise fit and healthy, so has good reason to believe he'll recover. I'm praying that he does. Those of us who have been diagnosed with melanoma know what it's like to fall into this whirlwind, and since I was invited by my wife's friend to share my insights, I've done so on my melanoma blog (www.theogler.blogspot.com). While everyone's experience with cancer is unique, we can learn valuable lessons from each other. In my blog post, I've enumerated a few of the things I've learned that may benefit John and anyone else in the early stages of cancer treatment, which I hope will lead to a cure or lasting remission. Blessings, PeterO.

www.theogler.blogspot.com

Login or register to post replies.

EricNJill's picture
Replies 8
Last reply 11/20/2010 - 9:34am

Eric had a Craniotomy on 11/6/10 due to a 3CM tumor that hemmorhaged.  Eric was hospitalized on Monday & Tuesday from swelling in his brain.  At the hospital they took blood cultures because his white blood cell count was high.  We got a call late last night that the culture great Gram Positve Cocci.  Wednesay and Thursday Eric started to decline.  Saying things that didn't make sence, cold sweats, he vomitted once, and is very confused as well as physically exhausted.  So we saw his Oncologist today and they took new cultures.  Eric's Oncologist is not wanting us to follow through with the Gamma Knife on the tumor bed that is HIGHLY recommended by the Neurosurgeon.  The Neurosurgeon said if he does not have it, the tumor WILL grow back.

Dr. Haluschak doesn't not want us to treat the brain, instead he wants Eric to have Isolated Limb Perfusion because he has so many tumors in the Right leg. He said if we do not get the tumors in Eric's leg controlled that he will only live 2-3 months.  We are very concerned about not treating the brain. We know that God is in control of how long Eric has. We pray that God will lead us in the right decision to make about Eric's treatment. Eric wants to continue to fight. We are so conflicted because different doctors are telling us different advice.

God help us.  This is so hard.   JillNEric in OH

Login or register to post replies.

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! 

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

Pages