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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Jeff's Mom's picture
Replies 2
Last reply 6/29/2011 - 9:32am
Replies by: Carol Taylor, lhaley

We got some good news - Jeff is NED!!  PET and CT - CLEAR!!  Brain MRI - CLEAR!!!

High dose Interferon is done - YEAH!!  It was tough, but he did it!!

He just finished radiation and suffered some awful side effects (sore throat, thrush and blisters), but he is on the mend.

He's going to try to do the low-dose Interefon regime...not sure if he'll continue because the side effects have been pretty awful (fevers of 103 and all night chills and rigors).  He's going to try, though.  I tell you, such bravery and courage in the face of this - he's an amazing young man (and I'm not just saying that because he is my kid)!! 

If he can't continue the low-dose IF, he'll try Leukine (Mayo's suggestion).

Right now we feel so blessed - he is NED!!!

I read this forum every day and pray constantly for all the warriors out there.

Jeff's MOM

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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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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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Janner's picture
Replies 2
Last reply 6/28/2011 - 8:30pm
Replies by: LynnLuc

Not sure how much I like this or not as I doubt two of my melanomas would have been of concern - but it is worth being a conversation piece at least.  If it makes even one person more aware and sends them to a derm, it's probably worth it!

http://eu.techcrunch.com/2011/06/27/check-your-skin-for-a-melanoma-yes-theres-an-app-for-that-too/

http://www.MelanomaResources.info

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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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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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Lauri England's picture
Replies 6
Last reply 6/28/2011 - 2:09pm

I am now into my 9th month of Interferon.  I had a shot on Friday night and about 5 hours later I was up throwing up and ached from head to toe.  I also had a severe headache.  I was then sick the whole next day running a low grade temperature.  I took Tylenol and the fever would go down but about 4 hours later the fever was back.  This was one of the worst shots yet.  I hope this does not stay like that with each shot.  It seems to get worse as time goes on.  Still NED at this time so the shots are worth it so far.  I have a Dr appt beginning of next month.

Don't sweat the small stuff. There are bigger fish to fry!

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DeniseK's picture
Replies 5
Last reply 6/28/2011 - 12:49am

Hi everyone,

I had my surgery and sentinal lymph node disection 16 days ago.  I go back to docs on June 30th.  Since the surgery I've had a chronic headache going through about 6-8 ibu's a day.  It could be from the stress!  My question is more about the pain in my chest.  My tumor/mole was on my upper/inner right breast.  The surgeon took alot of tissue which basically took most of my right breast.  I'm having pains that emminate down into my chest.  Kinda like the pain after the lymph node mapping.  I was just wondering if it was normal to have those pains. 

Thanks for your help on this.  I'm sure I'm normal but just want to hear it from another person who's gone through it. 

Denise

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

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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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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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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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MRFUser2011's picture
Replies 7
Last reply 6/27/2011 - 10:02am

Hi All, I have quit visiting this bulletin board because I find it just takes too much of an emotional toll on me.  However, because I have GOOD news, I wanted to take a minute and share it.  The reality of melanoma can be terrifying so I think it is important to share when we have positive news.

My original Dx as Stage III was in 4/08 and was followed by invasive surgery.  I was clear on all my scans until I had small nodules first appear in my lungs on PET/CT in 4/10.  In 2/11, I had one nodule removed via VATS from my right lung and in 4/11, had the other removed from my left lung via VATS.  I won't say it was easy or without pain, but I will say that here I am 10 weeks post op from my second surgery living a relatively normal life again!  My PET/CT of two weeks ago came back clear.  : )  

I want to share something that has for me been life changing.  After my surgery in 4/08, I lived in constant fear that the melanoma would recur.  I had a very bad story in my mind about what that would mean for me and my family and I wasted a lot of time dwelling in fear as a result of that story.  As it has turned out, I did have a recurrance and yet it was completely treatable and I am here to continue on with my life.  I am no longer terrified of melanoma and I no longer waste time worrying about it coming back.  I am doing what I can to live a healthy life and will take life one day at a time.  

May blessings of wellness be with you, Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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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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Suzgolden's picture
Replies 9
Last reply 6/27/2011 - 12:38am

Any opinions on vitamins? I am not a vitamin taker but would like to start taking some before I start any kind of adjuvant therapy. I am reading about Niacin, CoQ10 and Curcumin/Turmeric.

Whatever You Are Be A Good One -- A. Lincoln Right now I am a FIGHTER!

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