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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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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kwb's picture
Replies 4
Last reply 2/19/2013 - 9:41am
Replies by: DonJ, NYKaren, BethA in VA, scots

Today is the one anniversary of my Stage 2, Clark's Level V melanoma removal from my upper-back.  Doctors removed about a tennis ball-sized amount of tissue, then had to go back in about a week later to "clean up" the margins.  I had a 3.5 inch by 6 inch skin graft from my thigh to cover the "flap" created by the plastic surgeon.  I'm about fully recovered as far as movement and stamina are concerned.  However, I still get minor aches and pains when I do to much heavy lifting or other activities.  I still can't seem to exercise as much as I used to, and, unfortunately, swimming is almost completely out.  I will see a plastic surgeon in a few weeks to look at the scar tissue (including what's left of my "flap").  It may require an additional procedure.

In February of this year, while still recovering from November's surgery, I had two (2) in situ melanomas removed - one on my upper cheek, the other on my upper back (on the other side).  Needless to say, this past winter and spring were not pleasant for me or for my family.

I hope and pray that everyone who suffers through this disease continues to get better and gets the best possible treatment.

Unfortunately for me, I feel that every visit to the dermatologist is just another "shoe waiting to drop."

 

 

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DeniseK's picture
Replies 16
Last reply 11/5/2012 - 8:09am

Hey all!

Well I got the biopsy results back yesterday from the subcutaneous tumor that was growing on my arm.....Sure enough it's melanoma.  URG!!!  Surgery next week after Pet scan on Wednesday to make sure it hasn't spread anywhere else. (fingers crossed)  They said I was high risk to recur and sure enough I did!  It was just over a year.  So now I guess I'm going back to the Melanoma Center in San Francisco to determine what kind of treatment to do.

It was so hard telling my kids last night and it's scary to think about the future.  I guess if I was going to recur my arm would be the best case scenario vs any organs.  My doctor said that I will likely have these nodules pop up here and there.  The tumor started out the size of a BB when I noticed it and grew to the size of a marble/grape in about 2 months.  I have another one that is the size of a BB just below my belly button that we are going to remove and test too.  That one wasn't biopsied since it was so small but we're going to take it out just in case. 

I know a lot of you have been fighting and it amazes me the strength and courage you all have.  I am in this to fight as well and any input to what kind of treatments have worked or are working would really help me.  Someone told me about a Doctor in Germany that can cure melanoma.  Has anyone heard of this?  What about diet change or any other things I can do?  I refuse to go down without a fight!! 

Also I'm on unemployment right now and have temporary insurance until December 18th.  Could I get social security/disability?  How do I go about getting that so I would have insurance?

Denise

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

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mama1960's picture
Replies 3
Last reply 11/4/2012 - 11:26pm

I had the node dissection in right groin Oct. 1. Superficial and deep. 28 nodes taken and only one positive. Good news! Still have two drain tubes. The drainage started to taper off, then I went back to work this past Monday. Went way back up. The doc at MD Anderson said to scan and watch and did not recommend any additional treatment. Seeing local oncologist 11-14. For me, this has been a tough surgery and recovery, but the worst is behind me, I hope.

It is what it is.

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Tina D's picture
Replies 20
Last reply 11/13/2012 - 11:14am

My husband and I have been thinking a lot lately about choices we will face next month when I get scans again. My first set of scans showed complete resolution off every tumor ( we are continually thanking the Lord for that). I know that Z seems to cause a resistance that tumor cells can develop after time. My question is this. If the next scans are clear, wouldn't it seem to make sense to discontinue the Zelboraf and continue with frequent scans to monitor? If the cells are not constantly bombarded with Zelboraf, it seems they would be less likely to develop resistance to it. I know I am not as smart as the Drs ( not even close) but I also recognize that there are a lot of unknowns yet with zelboraf. I told my husband that the group of patients on this board have to be the most well informed group of cancer patients anywhere, and you have experience from institutions and Drs far and wide. I feel as if you are a tremendous resource of information, ideas and support. Has anyone broached this question with their Dr, or heard any evidence one way or the other? What are your thoughts? I have only been on here since May, but have grown to highly value your input and opinions.

Thank you,

Tina

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Moodypoodle's picture
Replies 11
Last reply 11/4/2012 - 6:37pm

In February I had a mid-foot amputation when the non-healing wound on my foot turned out to be Acral Lentiginous Melanoma.  Afterward I declined the interferon treatment due to the iffy results and certain diminished quality of life.  I am 71 y/o and QOL is a priority.  Quality of life was already compromised by the half foot thing.  I kept thinking things would get better; after all, amputation is pretty radical.  Six months or so after the surgery I started developing these little plastic-like pimply things on the amputation scar.  Plus some little red dots started showing up around the area.  My primary care physician sent me to a dermatologist at UAB who was not particularly concerned at all.  That same week I had a routine appointment with my oncologist who promptly sent me to the Wound Center for biopsy and scheduled me for immediate PET/CT.  Did I mention I also had egg sized lump in groin?  I’m sorry I still don’t have all the jargon down in spite of reading this site daily.  Anyway, it was the Wound Center doc who dropped the bomb: the melanoma was back and this time there were mets in lungs, liver and abdomen.  Oncologist confirmed diagnosis.  Both suggested I should look at getting my affairs in order.  My husband was/is a basket case.  I’m opting to do YERVOY and had my first infusion Monday.  It’s Friday now and so far so good.  This is definitely the short version of what is going on.  I just want (need?) to connect with others in the same boat.  Oh yes, those little plastic bumps?  They are now full-fledged lesions and the little red dots are spreading up the front of my leg.  A little ray of sunshine in all the gloom and doom, my brain MRI came back clear.  I was in the middle of Walmart when onc called to give me the good news!!  My biggest fears are pain and losing my ability to think clearly.

Every Second Counts!

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casagrayson's picture
Replies 2
Last reply 11/3/2012 - 11:09pm
Replies by: casagrayson, Janner

My husband has had two primary melanomas removed.  I noticed an oddly pigmented area on his jawline that the dermatologist almost didn't biopsy; it was a shallow melanoma that was removed in 2002.  This spring I noticed another flat, pigmented area on his scalp; it also was a shallow melanoma.  Neither one of these were deemed to be serious nor was he referred to an oncologist.  Last week he went back to the dermatologist because he had developed a nodule underneath the skin on his arm; it had been growing for over a month.  A biopsy was done, and it came back as inconclusive.  The specimen was sent off to a Univeristy for further evaluation, and those results came back as "recurrent basal cell carcinoma".  I should be jumping up and down with joy, but I'm concerned because he has never had a basal cell carcinoma in that location!  Is there any possibility that this could actually be a melanoma metastasis?  He is scheduled for a Mohs procedure next week.  Should we push for the "slow Mohs" given his melanoma history?  

Thanks for any direction you can provide.

Strength and Courage,

Susan

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