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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Carol Taylor's picture
Replies 6
Last reply 6/29/2011 - 6:01pm

This amazing couple has made another, at Eric's insistence. Jill has her hands full so I hope she doesn't mind if I post this for her here. I know these are meant to be shared and are on youtube.

http://www.youtube.com/user/EricNJill?feature=mhee

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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MRFUser2011's picture
Replies 3
Last reply 6/28/2011 - 9:03pm

I read, with some concern, the posts by others regarding Dr. O'Day perhaps not being at the Angeles Clinic anymore.  I called today and spoke to someone there and was informed that Dr. O'Day is definitely still at the AC, is on an "indefinite leave of absence" and is expected to be back by late July at the latest.  I was assured that he is not leaving AC and that the other doctors are only taking over his appointments while he is out on leave.  His assistant, Maggie, is also on leave until next week.  Maybe they just needed a break!

Blessings, Shari

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DeniseK's picture
Replies 7
Last reply 6/29/2011 - 4:27pm

Hi All,

Question about Interferon....The first month of high dose...is it in the hospital or do you go to the hospital everyday?

Do they give you a port immediately or just for the at home 11 months?  Do you have to have a port? 

Still deciding if this is the right treatment for me and if I'm going to be hospitalized for a month I'm not sure I can do that.

I still have more tests to do, PET Scan, Brain MRI, and LDH Levels tested.  Still haven't seen an oncologist but that's all happening this week and next so Interferon may not even be needed or a good treatment. 

Anyone having headaches from just stress or anxiety?  This is not cool!!  Of course my mind is messing with me and I'm thinking crazy brain tumors have invaded my head!!  I just want the tests ASAP to put my mind at ease!!  I saw someone got xanax for anxiety!  That sounds really good about now!  As well as some strong pain killers!! 

Thanks for all your help!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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ShariC's picture
Replies 11
Last reply 6/28/2011 - 3:23pm

Hi All - Word from the Doc today via a PET scan after my latest chemo is that it isn't effective enough slowing down this mel.  No more treatment is recommended.  I don't have time to wait for Yervoy.  The chemo was very hard on me and I didn't want to do it again anyway.   I've got a 9 year old, and plenty of family and friends around me.  I'm more peaceful than I thought I would be. Of course, my concern is for painfree. 

Thats it...for now.  I'll try to keep you all up to date.  I intend to manage this tumor load as long as possible and have some quality time left for journaling and perhaps a scrapbook.  Life is good...truly is.  Just sucks and is unfair sometimes.  - Shari

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JSJ80's picture
Replies 6
Last reply 6/28/2011 - 2:26pm
Replies by: JSJ80, Carol Taylor, Pat from Ohio, Anonymous, Sherron

I'll be leaving July 25 for an 8000 mile Harley ride to raise money with M4M.  Route is LA to Seattle, route 90 all the way to Martha's Vineyard (ok Woods Hole ferry actually), then down to Charleston, SC and back along the Gulf through TX.  Staying with lot's of friends along the way but . . . don't know a soul in Seattle (!).  Or between Atlanta and Dallas (!).

http://www.firstgiving.com/fundraiser/HarleyRideAroundUS/melanomaresearchfoundation

James Jones

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jimjoeb's picture
Replies 2
Last reply 6/27/2011 - 9:16pm
Replies by: Carol Taylor, awg

Hurray and thanks to God!

Now on to the oncologist to see what are the options and recommendations for me as a IIIa.

Be Not Afraid-God is with you always Stage IIIa

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JACKS WIFE's picture
Replies 8
Last reply 6/28/2011 - 4:01pm

My Sweet Husband was diagnosed with MM --regressed scalp and appeared in left neckLymph nodes.  This all happened in May of 2006.  He has had neck resection, high dose radiation and 5 months of interferon.  His liver would no longer tolerate these meds, so he was removed from that treatment in April of 2007.    All scans and dermitologist biopsies have been clear. 

Last week he had a CT scan....fairly routine.....and it has been returned with lymphadenopathy in the supraclavlcular, subpleural nodularity in both lung bases, enlarged left thyroid lobe and multiple enlarged nodes on the right side neck.

Scheduled for a PET/CT this week.    As you can expect, I am very concerned and have been told that the "supraclavicular" is a very unwanted area of recurrence.  Can anyone tell me if that is true and Why?

Thanks,

JACKS WIFE

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Rendergirl's picture
Replies 13
Last reply 7/2/2011 - 10:53pm

I have pre-op tomorrow and Tuesday I have my surgery. I'm having a tumo removed from inside my leg in back of the knee. They are going to use a nerve block, injecting me in the lower back, which I'm really scared about. I'd rather be put to sleep. They have to make sure the Melanoma hasn't spread which is why they're removing the tumor. I'm really nervous about the surgery and the pathology. I could use any good wishes and thoughts right now.... thanks.

 

Becca

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Hi Kevin

I was just wondering how your treatment is going on, hopefully still well? :-)

In case you´re not satisfied with the effect of your therapy, have you considered Ipilimumab?

It seems that my wife is a complete responder, thanks to Ipilimumab (and her positive mind).

I wish you the very best fellow warrior.

 

kind regards

willtolive

 

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Shelly in Switzerland's picture
Replies 2
Last reply 6/27/2011 - 9:54am

I am wondering about side effects of the STR. I have been wheelchair bound ever since the
WBR the middle of of March.
I begin the linac treatment (STR) this week, 5-10 doses. My left foot does not cooperate at ALL!

I want to fly to Seattle. Anybody out there who has regained use of their limbs?

Basically I am wanting to know length of recovery time after STR.
Am I crazy?

Shelly
There is no will but God's will. Today I seek his peace.

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H555's picture
Replies 3
Last reply 6/27/2011 - 8:05pm
Replies by: H555, Sherron, lhaley

My name is Ron Bassett-Smith, I'm 61 and will have surgery June 30th (the same day i retire ironically) to remove malignant lymp node(s?) from the inguinal area on my right side. I had a melanoma removed from my right calf 16 years ago, large excision, all tissue clean on the margins, regular follow up, no radiation no chemo. I was diagnosed with prostate cancer in 2005 related to Agent Orange exposure in South Vietnam in the late 60's. had surgery, then salvage radiation 2 years later and then was diagnoed with a biochemical recurrence in Jan of 2010. that one is slow growing, my psa scores are creeping up slowly. i'm very familiar with treatment, survival odds etc for prostate cancer. I've got a good oncologist at the Oregon Health Sciences University and for now see her annually till my psa scores hit a level that we've agreed will be the beginning of hormone therapy.

I found a lump on the line between my groin and my right leg 6 weeks ago, my primary care doc had a bone scan, CT scan of my chest, abdomen and groin and an MRI of my head and no tumors were identified. I was referred to the melanoma clinic/center at OHSU for needle biopsy on Tuesday and sure enough it came back as metastatic melanoma. I hadn't thought about the recurring in over 6 years. I'm having lymph nodes removed on June 30th and then likely interferon therapy in Salem - close to where i live.

We're kind of in shock. we had lots of plans for this summer, all of which are now on hold.  grandchild #2 is due in September, youngest son is in Kenya in the Peace Corps as of June 7th, for 26 months. I have lots to live for, am a bit nervous about what we might find out on Thursday but here's my assessment - tell me what you know, i'm on a similar web community for prostate cancer and have learned tons there in the last 6 years - 16 years between the 1st and 2nd occurence is good, no identifiable tumors is good. information after Thursday's surgery will tell us lots about how tought this is going to be. just thought I'd introduce my self as I suspect I'll be spending a fair amount of time here trying to understand the progression and treatement of metastatic melanoma. thank you.

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carol b's picture
Replies 13
Last reply 9/29/2011 - 7:10pm

I was wondering if anyone on here can tell me about having a baseball size melanoma tumor removed from under they arm. What all do they cut out and what am i to expect pain wise and recovery time. I am a little scared and concerned. Any comment will be appreciated because i have been looking it up on the computer on other sites and it seems like a horror story so i thought someone on here has had it done and could give me some correct advice.. Thank You in advance...

Carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Cspan's picture
Replies 12
Last reply 6/27/2011 - 9:03pm

My husband was diagnosed in January with scalp melanoma,when they did his PET scan they also found lymphoma (CLL) low grade and except for a few swollen glands- asymptomic.

It was very deep 6mm melanoma but he only had one sentinal node with micro mets. Because radical neck surgery didn't really improve survival and the interferon offered didn't really show much evidence of benefit we opted for watch and wait.

He went to an intergrative medicine specialist and has been working to boast his immune system naturally. Nothing crazy just organic foods, fish oil, green tea etc. His last bllod work looked great LDH went down from 200 to 143

Last week he found a lump at the sentinal node incision line...it came back positive. We are having a really hard time and confused....this hasbeen the worst weekend of our lives. I don't know where to turn...should we go to a melanoma center? We live in Portland Oregon. Also, I don't know what to do for him emotionally and I guess right now this is our worst problem. He isn't sleeping or eating much and has a racing mind. He is fixated on getting his affairs in order. Am I in denial?

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/26/2011 - 5:32pm

If during surgery while cutting out a tumor with wide margins, the surgeon "unknowingly" cuts into another tumor and only half the tumor is remove because it was at the wide margin confirmed by a pathology report , can anyone speculate or have knowledge of what happens to the open, penetrated cancer tumor left in the body. Do cancer cells fload into the blood/lymph system because the tumor has been penetrated? Your opinion would be appreciated. This scenario has happened to me and I am am trying to deal with it.

Thank you for taking the time to give me your  opinions

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Nebr78's picture
Replies 6
Last reply 6/29/2011 - 3:06am

I have been taking radiation for a mass that has entered my spine.  Last treatment about June14.  Two days ago I started  having pain in lower back and it has gotten worse.  About a 10 on a scale of one to 10.  I see doctor on Monday.  I  am taking Morphine and Lo-tabs for pain.  It don't quite do it.  I fear that the radiations didn't kill anything and it is in spinal cord.

Has anyone had this situation?

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