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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LynnLuc's picture
Replies 6
Last reply 11/29/2010 - 11:09pm

I am stage 4 NED...I was told I would always be considered stage 4 and would not regress to lesser stage...is that true- even though I have no disease at this point? I was told it's the distance it travels and not how "bad" you are...Just wondering...anyone know?? 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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dian in spokane's picture
Replies 4
Last reply 11/25/2010 - 12:08pm

Hey Kevin,

If you are reading..we'd love an update. I am sure I am not the only one wondering how things are going with you.

 

dian

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FertilityDoc's picture
Replies 13
Last reply 11/24/2010 - 8:57pm

I was diagnosed with Stage IIIb Melanoma in 04/09.  Made it through the year of Interferon ending in 07/10.  Had a negative PET scan in June.  Was scheduled for a repeat CT scan on December 6th.  I had really put the Melanoma behind me.  As we all know, you continue to live with the fear.  Over the past week I have had vague right upper quadrant discomfort about 1 inch below the rib cage.   Not bad.  Just a vague sensation which seems to worsen after eating.   Could be gall bladder disease or gastritis (had H. Pylorie in the past).  Can't get fear out of my mind.  Based on my fears and for the sake of being careful I moved up my CT scan to this coming Wednesday.  I am just curious.  For those who have had liver mets, did you have any early symptoms?   Could you sense something wrong early?  Any vague bloated feeling or discomfort?

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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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Sherron's picture
Replies 16
Last reply 11/24/2010 - 9:20pm

It has been a roller coaster lately.  Jim as some of you know has been in and out of VA ER for several weeks.  They did emergency surgery on Friday around noon.(he had only about 36 hrs left)  No time even for scans...they could see the hole.  They did a resection.  They were hoping to do further work but he was very unstable during the surgery,  His stomach was filled with blood and bile.  There are still 12 to 13 tumors which will most likely do the same thing.  They were hoping to remove more and give him a bag....but at this point that does not look likely;  His stomach is open with gauze over it.  It has to heal from the inside out...He will be here for 7 to 20 days...then they will send Home Health Care out to chnage and clean the area.  The doctor will set him up on some good medications for pain and break thru pain.  And we will try to give him the best QUALITY AND PAIN FREE TIME LEFT FOR HIM.  Jim had 4 years 2 months of great quality time, which is what he wanted, ..I don't think the doctor has told him about the other tumors, nor have I since he has been in ICU....but I think he probably know there are more.  We pray and ask for your prayers for a pain free holiday season, seeing many family members, making some few final joyous memories...

I will keep everyone one informed on things as it happens.  Thank you for being here for me.

Take Care,

Sherron, wife to Jim

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Joan C's picture
Replies 5
Last reply 11/22/2010 - 6:27pm

I just saw this on CNN.com.  Has anyone else heard any more about it?  It doesn't read like much more than a press release, I'll try to search more on the internet.

 

http://pagingdrgupta.blogs.cnn.com/2010/11/19/device-could-detect-melano...

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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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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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JohnHen's picture
Replies 17
Last reply 12/2/2010 - 5:28pm

 

I am a new member of this exclusive club and I am searching for some thoughts on a few questions. On Tuesday, November 16, I had a sentinel lymph node mapping and a wide excision on my back left shoulder for an ulcerated tumor that was first noticed mid August as a tiny bump,and initially removed about 4 weeks ago. The pathology after surgery came back as: 

Breslow thickness: 7 mm; Clark level: 5; mitoses: 15/mm2; ulserated

13 lymph nodes were removed with two positive for macroscopic cell growth both inside and outside of the two nodes

Clear margins were achieved except for the bottom where only 1mm clear tissue could be achieved before hitting muscle

Presently, I have no symptoms or indications of any other tumors.

I have been doing a lot of reading so I have a pretty good idea of where I stand statistically. My questions today are:

1. How long should I wait after surgery for the PET scan in order to avoid false positives?

2. Living in Southern California, what would be the best center(s) for melanoma treatment? As of Jan 1, I will have a PPO that includes City of Hope, Ronald Reagan UCLA Medical Center, UCSF Medical Center, and I believe Univ. of Stanford Medical Center. Possible others but I have seen these rated high as overall cancer centers. My current HMO will allow a second opinion after my PET scan so I should be able to at least pick the center to get started.

3. Depending on which stage i am at after PET scan, can you suggest the most beneficial treatment to pursue. I am open to clinical studies.

Heck of a way to begin our retirement as of July 1, but we will do all that we can do and hope that I can survive until a true cure becomes available. I appreciate your thoughts in advance.

John, 58, healthy and hopeful!

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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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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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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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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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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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jenniperry's picture
Replies 7
Last reply 11/22/2010 - 9:14pm
Replies by: Rocklove, James from Sydney, EricNJill, jag, Anonymous, vickirs

So we ended up not doing the biopsy due to subcutaneous tumors popping up in 5 spots. They scheduled him for a pet and ct. They figured the skin was pointless to biopsy due to the fact that we knew it had grown. The pet showed the mets we can feel and a few that aren't detectable yet. One of his liver lesions was unchanged at 3.1 cm, however the other that was 1.8 grew to 5.1 x 3.4 in less than a month. It also moved to the porta hepatis region of his liver and is protruding out. It is still considered to be inside the liver. They gave us the option of a vaccine trial where they removed a lot of blood and then do something to the blood and return it and be hospitalized for a week for the vaccine to be placed in a catheter in the leg. They also said we could try IL2 again. He's not a candidate for chemo or BRaff. Not sure what to do.

Cherish every day you have.

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