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.

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A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

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Anonymous's picture
Replies 9
Last reply 12/21/2012 - 7:01pm

Hi all...I have been reading these posts for a couple of months now but this is my first time writing.  I am looking for some advice and thought this might be the best place to get it.  My father is 64 years old and has lived a very healthy life until being diagnosed with Stage IV melanoma.  The satillite tumor started on his back and was removed in July.  His lymph nodes were clear but in August a spot was found on his lung (traveled through the blood) and was removed in September.  His last CT scan a week ago showed NED so he is trying to decide what to do next.  One doctor in NY suggests he get CT scans every three months and when it returns start treatment then (ipilimumab or possibly Anti PD1 trial).  Another doctor in Boston suggests that he enter into a clinical trial now while he is NED, the trial consists on either Ipilimumab or interferon.  We are trying to decide the best path to take and are looking for any help or any suggestions?  He is feeling so good and healthy now that he isn't sure if he wants to feel awful for a year of the trial.  We also keep hearing that neither med in the trial have very good results, so is it worth it?

Thank you for any advice!

   

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sharmon's picture
Replies 4
Last reply 11/7/2012 - 10:08pm

Hi all,  Brent is here at Moffitt waiting on his biopsy to finish his tests for the Anti PD1 merck trial.  His first infusions is scheduled for the 11th. 

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Wayne drinks several glasses of soda water a week.   I don't care what anybody says.......his first tumor shrunk on it from 1.9 to 1.1 in two weeks before we ever saw Oncologist in Houston and began treatment.     It neutralizs acid in the body which is a feeding ground for cancer.   Lots on YOUTUBE also.   The only drawback is too much for kidneys and bladder...and that's what they are working on now - HOW MUCH to take.    Wayne goes by his alkaline strips.   They say it IS shrinking tumors in rats.    

JUST SAYIN'....................

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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kenpochick's picture
Replies 18
Last reply 2/19/2013 - 10:27am
Replies by: kenpochick, DonJ, Anonymous, Tina D, POW, Janner, Phil S

Hi.

 

New here.  My X husband just told me he has recurrant melanoma.  I had pointed out the lesion on his face probably a year ago and bugged him to get it looked at.  He had it removed and said they got it all. 

He had surgery again later because, he said, there was a hair follicle that was causing it to seep and they needed to go back in and remove it.  Turns out he was lying.  He does that a lot -- thus why I'm researching.

Turns out it had come back.  If I have all the information, which I likely don't, then he has had a third surgery to remove a lesion on his back two weeks ago.  The doctors have removed some lymph nodes (no idea size or if swollen).  Doctors wanted to remove a cluster, but he said no because he didn't want lymphedema.  (I have lymphedema post-Hodgkins) 

He has tried interferon, but it hasn't worked.

He says his white blood cell count is way down and his liver functioning and kidney function is out of scale as well.

He is an alcoholic and has been for about 7 yrs.  He's white, has the skin tone of a redhead, got burned a lot because he refused to wear sunscreen, is overweight, and eats badly.

He said he was given 6-12 months as a prognosis.

His health insurance lapses in a month because he lost his job, in part from taking time off for treatment and feeling bad.

He said sometimes he's in pain (from the cancer moving through his lymph system, I'm guessing) and other times is fine.

His father died from melanoma that had metastisized into his kidneys.

This is the info I have.  I'm stressed about the whole thing.  So is he, of course.

If the interferon doesn't work for him, is there anything that might?  Mind you, he is largely unwilling to change his diet or his mindset. Or stop his drinking, since he hasn't so far.

Does the fact it moved to his back mean that it's now moving through his system?  I don't know if it has affected his organs or not.

I gotta know what to tell the kids and when would be the best time.  He's hugely depressed, of course.

Thanks for any assistance you can give.

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Snickers60's picture
Replies 1
Last reply 11/7/2012 - 4:56pm
Replies by: Tina D

Wayne and I just returned from MDA on Sat. Night.    THE PET WAS CLEAR AND CLEAN except for that one pesky little spot on his right leg above knee.  Sub-cutaneous fatty tissue, so they did a biopsy on Friday.   We are waiting for results. 

The way they found Wayne's mets in March was through a heart plaque scan, so we are back at Cardio catching up.   He says Wayne needs Heart Cath and possible stents after testing.    

HOWEVER, we cannot have that done until we know biopsy results.   Will have to go back to MDA for surgery to remove that first MAKING HIM TOTALLY CANCER FREE and then he has to wait a short period of time before he can have Cath/Stents.  

OVERALL, we are very excited about results and will be happy now to TAKE CARE OF this pesky little heart thing.   Gilda Radner said:  'it's always something, and then she died"   -  LOLOLOL '

Anyway, we shall find out today about the biopsy, PRAYERFULLY !    I need knee surgery too, so we have possibly 3 surgeries to get done by end of year. 

BUT, Oh what a year that will start out being !   YES !!!!!!

He started Zel on April 23, 2012 and has been clean in ALL ORGANS since June 16th !!!    

WE DO NOT KNOW WHAT NEXT STEP WILL BE - POSSIBLY to keep on keeping on with ZEL !   Will meet that challenge when it comes.

BLESSINGS AND HEALTH TO ALL OF YOU WARRIORS out there !   HANG IN THERE - NEVER GIVE YOU ! 

Nancy (Devoted wife of 3 X Warrior Wayne) 

 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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sharmon's picture
Replies 5
Last reply 11/13/2012 - 11:17am
Replies by: Snickers60, JerryfromFauq, sharmon, Anonymous, melissa ann

Hello everyone.

The Gsk Mek trial Brent has been on for 33 months seems to letting the melanoma grow.  Very slowly and now he has bone leisions in his ribs near where the largest tumor is in his lung.,  The growth was not enough to removed him from the trial at MD Anderson but we were both concerened because the pain is unbearable without heavy pain medication.l

We live in Tampa and went to see Dr. Weber for an consult about the pain.  Brent was thinking radiation.  Dr. Weber suggested he try Anti pd ! and he has passed all the test and is to start Nov. 11th.  It is the Merck trial and how we got in is a miracle story in itself.

I am needing some support from anyone in the area that can email me with what to expect. 

I read this forum daily and I feel at peace here and understood.,

 

 

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swissfarm7's picture
Replies 2
Last reply 11/6/2012 - 10:51pm
Replies by: POW, Mandi0280

Thought I'd share an update since I really appreciate reading present and past feedback on various treatments.  My husband (stage 3B) is on his fourth and final week of high-dose interferon.   I mentioned here at the start that his side effects have been fairly manageable.  Based on all I read, I was prepared for him to be nearly out of commission.  In reality he does work each day ~ and as a dairy farmer, it's not a desk job. ;-)  

Mondays ~ the first day of treatment each week ~ have been the most difficult.  He's had a couple of instances in which he was extremely nauseated and gripped with a severe headache.  Generally, though, his side effects are on par with a low-grade flu.  He previously functioned just fine on six hours of sleep each night.  Now, he's typically in bed by 8 pm, sleeps 10-11 hours, and naps for an hour or two in the afternoon.  He's fatigued, has lost 10 pounds, and is what I'd describe as listless.  Not depressed per se, but just not himself.  Maybe those of you who have experienced the treatment ~ either directly or indirectly, as a caretaker ~ know what I mean.

His ANC (Absolute Neutrophil Count) numbers (white blood cells) have been decreasing, which is to be expected.  But today it was low enough to require a dosage reduction, so he'll finish out this last week at half of what he has been receiving.  Then he'll move on to sub-q injections three times per week.

Despite persistent "encouragement" on my part, our insurance will not pay *anything* toward the injection doses.  Paying for a drug to be administered intravaneously but not paying for it to be self-administered sub-cutaneously.  Where's the logic?!  Through the clinic, we were able to register for the ACT Patient Assistance program.  It was strangely quick and easy to be accepted into this program, and the interferon will be sent directly to our home.  Something about the whole thing doesn't feel quite right, like there are strings attached that I don't know about yet or something.  I don't know if it's a big tax write-off for Merck or what?   Anyway, at this point, it's all we've got.

One thing I'm realizing, as he receives care now at our local hospital, is how exemplary was the attention we received at Seattle Cancer Care Alliance and University of Washington Medicine.  That's where we went to immediately his diagnosis, where he received his surgeries and was under the care of surgical and medical oncologists whose specialty is melanoma.  I absolutely felt we were in the best hands possible, people who are experts in this field and whose knowledge I could trust.  Our home hospital is very, very good, but the reality is the oncoloists there don't typically deal with melanoma.  They're good people, well-educated and well-trained, but they ~ and the staff at the infusion oncology clinic ~ are far more familiar with other cancers.  I therefore feel a lot less comfortable and a lot more weary, always wondering if they really know what's best. 

Anyway.  I'm rambling, I suppose because this is my outlet to talk to people who really know about this disease.  I'm always reading here, cheering for all of you. 

Warmly,

Colleen

Keep on keeping on.

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yoopergirl's picture
Replies 8
Last reply 2/19/2014 - 5:19pm
Replies by: Anonymous, yoopergirl, lhaley, awillett1991, Zan

 the  left leg is buckling under me when I try to stand up now and I fell 4 times this weekend, need help using the bathroom now and showers are not even in the picture since I fell ccoming out last Friday. The chemo must be doing this, any one else?

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jatbrown's picture
Replies 11
Last reply 11/10/2012 - 6:00pm

Can anyone share these last weeks of shots with me?  How did you do? Side Effects? 

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Souxie_q's picture
Replies 8
Last reply 11/6/2012 - 5:06pm

Well everyone I posted on the 17th of October about my sister, she passed away on October 22. Unfortunately her cancer was too aggressive and she was never able to start zelboraf.
Almost 2 weeks out I still can't believe she's gone. I was with her when she died, told her how much she was loved. I'm writing here because the Zelboraf showed up too late for her to use but I have 2 bottles of this. The drug company won't take them back and her oncologist's office said they would try to get them back to the drug company, but I'd rather someone else use them....
Is anyone here in need of it?

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EmmaR's picture
Replies 12
Last reply 9/3/2013 - 1:24am

Hey everyone, I am about 5 weeks into my low dosage interferon injections and I am really starting to notice a lot of my hair coming out daily. Did anyone else have this problem, or anything similar?
Any stories or advice related to hairloss would be greatly appreciated.
I know I should just be thankful that the treatment is working, but its hard to see so much hair come out every day.

Livin' Lymphless

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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thrashter's picture
Replies 10
Last reply 11/5/2012 - 1:11pm

After this surgery going to Oncolist and starting biochemo therapy. I read it is tough but doable. Having done at Kaiser. Would like to get a gage as to how tough it will be. Thanks

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