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.

Expand/ Collapse Topic
 
Replies By
View Topic
shellsbells's picture
Replies 15
Last reply 4/4/2013 - 10:46am
Replies by: natasha, Anonymous, POW, Janner, shellsbells

Ok, so, I got diagnosed with in situ on the left arm. I went in probably within 6 weeks of noticing the first signs of change. The papule was so small (pen or pencil tip size) and black. Dermatologist almost did not send it. Said she thought it was "nothing to worry about". Well, it was in situ. My measurements were pretty small, I cannot remember what.. but the pathology report showed the surrounding skin was "normal" and "cancer free". I got it removed with 0.5mm surrounding area within 2 days of results. I keep reading all these horror stories of it metastisizing.. it scares me. I am an RN so, I think the worst.. I cannot see just statitstical reassurance, and look into the worst case scenario... My dad's brother died of melanoma 8 yrs ago at 43.. but it was melanoma caught late..

I need some reassurance, or success stories, or personal experiences, or tips!.. please help

 

Shelly

Login or register to post replies.

lrkg1234's picture
Replies 2
Last reply 4/5/2013 - 7:02pm
Replies by: awillett1991, kkhalsten

My husband Scott is really helped by taking Zofran for nausea, he needs one a day. 

The insurance only covers 10 and gives us a lot of trouble to get more.  It's a big hassle and worrysome.  He needs the Zofran in order to maintain his weight.

He is going to see if his oncologist can do something to improve the situation, maybe write an letter or call??

Has anyone else had this happen and what did you do?

Thanks, Lisa

Login or register to post replies.

Acacia's picture
Replies 4
Last reply 4/4/2013 - 4:15pm
Replies by: Tim--MRF, Tina D, Acacia, jmmm

My husband was diagnosed with Melanoma on January 31, 2013 and began taking Zelboraf on Febuary 1st. He was told he'd be on it for the rest of his life (or till it stops working pretty much) Has anyone else been told they'd have to take these pills for the remainer of their life? This struck odd to both of us.

Login or register to post replies.

Gene_S's picture
Replies 3
Last reply 4/4/2013 - 7:20pm
Replies by: Phil S, Anonymous

The purpose of this thread was not to upset any readers here. The real purpose was to educate you that MD Anderson is a business. The CEO has put demands on employees to generate more income! In order to generate more income are they giving you more tests than are necessary? Keeping you in the hospital for extra days. Unneeded medication that is not to your benefit?

I am quite sure that the people that you deal with, the doctors and staff are outstanding and are trying to do the most they can to help cure your melanoma.   Is this the beginning of "Profits over People?

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

Login or register to post replies.

Replies by: Theresa123, Colleen66, MaryD

I have had interferon, biochemo, TIL, and Yervoy.  I am blessed to still be here since I have had unresectable Stage IV melanoma since 2009.  Now they tell me my chronic pain is probably due to fibro.  Has anyone else had this happen?

Every day is a miracle.

Login or register to post replies.

swissfarm7's picture
Replies 10
Last reply 4/4/2013 - 7:52pm

Next month the Melanoma Research Foundation and Seattle Cancer Care Alliance are presenting a melanoma symposium.  It's a free educational event.  Have you ever attended something like this?  Would you, if given the opportunity?  More to the point, what does it say about my "new" life that the thought of going to a melanoma seminar lights my fire? ;-D

Cheers,

Colleen

Keep on keeping on.

Login or register to post replies.

swissfarm7's picture
Replies 5
Last reply 4/7/2013 - 4:27pm

Can't think how to title this post; forgive me, please, if the phrase "watch and wait" doesn't work for you.  I feel like we're in limbo on this melanoma journey.  It's difficult to know how to process where we're at and even more difficult to explain to others. 

Six months of interferon was enough for Hans (stage 3B).  His white blood cell counts were so critically low for so long, he would have needed another drug to counteract the effects of the interferon.  He understandably wasn't willing to go that route.  So now it's a matter of...what?  People here that he stopped the drug and glibly ask me, "Oh, he's all better?" or refer to him "kicking cancer".  They ask if he's in remission.  And, well, I don't know how to respond.  How have the rest of you handled this?  I usually just tell people that as far as we know there's no current evidence of the disease and that he'll have another scan this summer.  I guess that's all there is to say, huh?  I don't know...Some how melanoma seems so different from other cancers.  That's why I'm posting here.  Because in "real life" I know many people who have encountered cancer, but not a single one who's dealt with melanoma (or at least not at this stage).

Best,

Colleen

Keep on keeping on.

Login or register to post replies.

Sharmon, just was reviewing forum and noticed you have not posted in awhile.  Hope Brent is well and you also.

Keep us posted maybe we can help.

Susan...Sister of  Angel Peter...12/6/2012

Login or register to post replies.

Phil S's picture
Replies 6
Last reply 4/4/2013 - 1:26pm

Okay, I usually don't quote Hillary Clinton, but I feel like fighting melanoma really does take a village of people. Not only do we need the medical professionals (doctors,nurses, scientists), we also need the drug companies who run the clinical trials, the family and friends who care for our children, all the people who offer us emotional support and prayers, and our mpip family who truly understands our struggles and fears! When Phil went stage 4 in July 2011, I was so scared and unsure of our future! When the nasty beast spread to his brain only three months later, I thought our family was doomed! I felt for sure, we would be losing Phil soon! But, we got ourselves to MDAnderson, Phil did six rounds of biochemo and the TIL trial. He finished the TIL trial in May/June 2012, and we are thrilled to say that today in Boston, he got STABLE scans again, 11 months post TIL cell day! So, we have another 3 months of treatment free living, and get to enjoy the Spring with our children, and more importantly Phil feels really well. So, THANK YOU to all who have helped us fight against the very bad odds, we love our teams at MDAnderson and Dana Farber! No one has ever taken Phil's hope, they all encouraged him to keep fighting! So Stay Strong Warriors, you are all AMAZING, and dont forget to kiss/hug your caregivers, the village truly starts with them! God bless, Valerie (Phil's wife)

Login or register to post replies.

meeshka6059's picture
Replies 3
Last reply 4/6/2013 - 9:54am
Replies by: susanr, meeshka6059

Has anyone experienced this?

Dad's 3 doctors, oncologist, neurological radiologist, and internist (who works at their retirement community) HAVE NOT called Mom at all. Not during Dad's time on hospice (when we tried to call we were told they were on vacation... all of them?!) or since Dad's passing on 3-26-13. Mom and I are upset about this. Even the vet contacts you when a pet passes away. Of course we are trying to let it go but.... come on.... a call? a note? something? anything???!!! Or is this standard protocol when someone dies "on your watch"?

Dad's cardiologist sent a beautiful note when she found out.

What gives?

Thanks,

Michelle

Login or register to post replies.

Gene_S's picture
Replies 5
Last reply 4/3/2013 - 6:35pm
Replies by: Theresa123, Anonymous, Beth, Phil S, Linny

Dissatisfaction with the institution’s president Ronald DePinho 
and his top executives—at a time when the administration is pressing 
the faculty to meet aggressive financial targets that critics say are 
unrealistic.

------------------------------------------

Here is a link to where there are problems.

http://www.cancerletter.com/articles/20130118_1

 

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

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 4/2/2013 - 5:21pm
Replies by: Ranisa, mel123

Hello- I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I have tried photography at home and I am just no good at it. My dermatologist was not able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I do not necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own. Thanks for your help!

Login or register to post replies.

Hello-

I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I've tried photography at home and I'm just no good at it. My dermatologist wasn't able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I don't necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own.

Thanks for your help!

Login or register to post replies.

Janet Lee's picture
Replies 2
Last reply 4/2/2013 - 7:43pm

I don't recall seeing much posted here about tumors not responding to radiation.

Don had cyberknife on an asymptomatic brain tumor, and a week later it was growing, bleeding, and swelling to the point that he was eventually paralyzed on one side and had speech problems.

Just wondering if anyone else has had this experience.

Also, does this mean the radiation to his pelvic area might have had the same affect (haven't had followup scans yet

Janet

Login or register to post replies.

Gene_S's picture
Replies 27
Last reply 4/6/2013 - 11:28am

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

Login or register to post replies.

Pages