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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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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KatyWI's picture
Replies 3
Last reply 11/23/2010 - 6:52pm
Replies by: triciad, vickirs, KatyWI

Will they still give Ipilimumab if I have a cold?  I am supposed to start on Monday, and I started having a sore throat yesteday.  Dang.  I avoided getting sick from my kids and husband for two months while they passed bugs back and forth, but I must have gotten something traveling for work this past week.

Anyway, are there any Ipi veterans with any experience in this kind of situation?

KatyWI

Just keep going!

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2atlascedars's picture
Replies 6
Last reply 11/22/2010 - 6:15pm

SNB completed...inguinal incision is about 3 inches long...expected 1 inch.

WLE completed, but doctor couldn't close with a split-thickness skin graft, so he used cadaver skin as a temporary closure. I will have to come back in a week or so (after the SNB results) for a full-thickness skin graft from my thigh.

Looks like I won't be able to walk for about 3 weeks. Also, due to Thanksgiving week, I may not know my SNB results until the Monday after Thanksgiving.

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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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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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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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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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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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