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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Anonymous's picture
Anonymous
Replies 6
Last reply 11/22/2010 - 4:43pm
Replies by: dian in spokane, Anonymous, EricNJill, Jim M., sofiaeli

Please help me. I am considering a vaccine that I would need to do Leukapherisi. Anyone have Leukapherisi, please describe the process...is it difficult or painful??? How long does it take??? How many needles, etc.

Thank you I am so scared to do Leukapherisi.

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CaptAaron's picture
Replies 2
Last reply 11/22/2010 - 1:14pm
Replies by: dian in spokane, Anonymous

Good day fellow warriors!  Well I want to reitterate that I'm overwhelmed at the responses I got to my first post.  Everyone had wonderful inputs and I trully appreciate that.  It just sounds like the entire decision is too ambiguous to make it easy on anyone, and the limited evidence supporting Interferon treatment creates another dynamic to our scenario that is also not desirable.  With the misery that ensued last Monday evening, I was at least ready for it on Wed evening when I gave myself the second injection.  Surprisingly, it wasn't bad at all.  I was a little tired, and a little spacey, but definitely nothing like the first night.  I thought this was a good sign.  My third shot came on Friday evening and again, nothing notable about the experience.  This is good.  As long as my Wed and Fri evening experiences continue, I'll be good to go.

I still think there's justification for my questioning the staging methodology for melanoma and how it can be better refined to account for the individual afflicted by this disease and not just the statistics.  However, that's not my expertise, and I'm sure there are thousands of doctors and subject mattter experts more qualified than I making those determinations.

Stay strong warriors!

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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Replies by: Rebecca and Bob, Sherron, Pekoe, King, Anonymous, Fen

We have had a good 16 month break from anything going on. The scans in mid October were clear but Bob has been having a burning sensation and stomach pains cramps again. When I called the doctor last week they said they would have seen something on the CTSCAN causing symptoms, but I've heard to many times that people with Intestinal mets that they go undetected..  Anyone who has had intestinal mets please feel free to add your thoughts.  I'm just praying it's anything else. I never thought I would pray so hard for the flu or a stomach virus. Anyway, he is trying to get a scope scheduled or a PET. I know he's worried when he is actually calling the doctor himself.

Looking for positive thoughts and prayers. I have been  thinking and praying that we were done with our turn with this disease. I thought maybe it was done after the IL-2 and surgery.

 

 

Thanks for listening.

Rebecca

 

Believe

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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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Amy Busby's picture
Replies 11
Last reply 11/21/2010 - 7:25pm

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!"

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Melanoma Mom's picture
Replies 8
Last reply 11/21/2010 - 5:58pm

I have read the definition of mitotic rates and that a "high mitotic rate" indicates rapidly dividing cells and thus,  higher chance of metastasis. But what is high and what is low?? I can't find any examples. 

Our path report says: mitotic rare of 2-3/mm2

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Jim was released from the VA Hospital after his blood transfusions but had to return for emergency surgery on Thursday. He had a tear in his colon and that part was removed and resected. He is now in ICU and wlll  be until at least Tuesday. The doctors say he may  be in the hospital for 3 weeks.  Please continue to keep them in your prayers during this difficult time.

Thanks again for your care, concern, and support for this family.

molly

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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 

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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!

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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

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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

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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!

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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!"

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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

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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

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