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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buffcody's picture
Replies 2
Last reply 2/5/2013 - 12:43pm
Replies by: Tina D, awillett1991

My oncologist at the University of Michigan, Dr. Lao, read and reported Thursday on the scans done  the previous week.  My brain MRI showed the two tumors that had been shrunk in December through SRS were stable, with one of them smaller, though the other did show some hematoma.  The PET scan was clear exepct for a suspected met in the left buttock.  Recommendation was to watch and wait to see if this very small supposed tumor grows with scans taken again in 7 weeks.  Dr. Paul Chapman at Sloane, whom i have been seeing for second opinions and saw again this morning, agrees but has more doubts that what is showing up on the scan in my butt is actually a met.  He recommends if it grows to SRS it.  It's very nice to think I have seven weeks to live and not be treated, just having finished my ipi infusions four weeks ago.  Side effects from that, fatigue, rash, and itching, have quieted down but are still with me every other day or so.  Never quite sure what is going to pop up when.  But Dr. Lao ranks me among his "best" 5% patients on ipi. He means manageable, I think.  No way you know the results yet.  Just know things have been quiet.

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Janet Lee's picture
Replies 4
Last reply 2/5/2013 - 11:43am

My husband was first diagnosed with Stage IV Melanoma this past January 18. He started radiation for pelvic/lower back pain on January 25. Cyberknife for brain lesion was supposed to start soon after. His "mask" was made around January 21st, another MRI was done of the brain on January 27, and the "mapping" was completed for the cyberknife on January 28/29. The radiation oncologist said the cyberknife would be done last week or today (Mon 2/4).

Tonight the radiation oncology department informed us that the cyberknife can't be done until next week because they are short-handed.

I am so upset I can't even think. Don's brain tumor is asymptomatic at this time, but it was my understanding that we needed to get this done asap. Each day is a delay in his treatment. Each day that the brain tumor is not addressed is one more day that makes him ineligible for any clinical trials.

If I'm overreacting, please tell me. We are coordinating his care with Dana Farber, but doing the radiation at a nearby hospital. Should I call the onc at Dana Farber?

Thanks!

Janet

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Tina D's picture
Replies 6
Last reply 2/5/2013 - 7:40am

We are in St Louis, and I completd 3rd ipi dose today. So far I am doing very well and no adverse effects. Have had night sweats, but nothing more. Grateful for feeling well. I know many are in midst of hard days at the moment ...  I am constantly aware of this, on both my good days and those that are more difficult. 

Tina

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Colleen66's picture
Replies 9
Last reply 2/5/2013 - 6:23am
Replies by: DeniseK, Colleen66, Anonymous, Swanee, casagrayson

October 2012 had WLE and slnb, node positive.  November 2012 had surface nodes removed from groin.  December 2012 started Interferon thru clinical trial. Had to stop infusions in January because of severe side effects, Doc won't even let me do the shots cuz my body can't handle it.  Last scan in December showed 4mm lung spot, have had chronic cough for a month, will rescan in March I think.   Just had two more biopsies and very early melanoma, will re excise,  no worries.  

Thing is, I feel better than I have for the past year.  My mood has been incredible, I'm exercising regularly at ymca, appetite is great.  I'm not even worried about future treatments, surgeries, have even accepted death.  

I think I am trying to fool myself.  Aside from feeling great I have been organizing everything.  Cupboards, closets, paperwork, every thing that can be cleaned or organized I am doing.  I guess I'm preparing.  I have never really gotten depressed, had crying spells or emotional outbursts since diagnosis.  I'm just doing what needs to be done.  

Am I not accepting things? Am I falsely happy and is that a bad thing?

I'm wondering if any of you are or have experienced this.  Any input is greatly appreciated. 

Colleen 3B

Live!

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/4/2013 - 11:38pm
Replies by: DeniseK

Hi Denise,

Thank you so much for posting Lazarex info. I live in CA. and also in a clinical trial. I called the lady at Lazarex & I have to complete a form so that a decision will be made to help me with my costs.

Did you have to complete a form? How long did it take for a decision to be made to help you or not help you.  What did Lazarex agree to help you with?/

The lady was vey busy and  did not tell me much over the phone.

Denise, thank you so much for taking the time to answer my questions.

Betty

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NYKaren's picture
Replies 2
Last reply 2/4/2013 - 11:18pm
Replies by: Swanee, Gene_S

Hi Gene,

I posted an apology to you in the Vitamin D thread.  Then I went to your profile to message you that I'm terribly sorry about being rude to you,

and there's no "contact" link on your profile.  Not always sure how this stuff works. So please go look at that post :)

karen

Don't Stop Believing

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POW's picture
Replies 4
Last reply 2/4/2013 - 10:38pm
Replies by: DeniseK, POW, awillett1991

My brother's oncologist at Moffitt recently told us that they are no longer accepting patients into their anti-PD1 trials unless and until the patient has tried and failed ipi (Yervoy). Has anyone else heard this? Does anyone know why this should be the case? On the face of it, it seems to be a very odd requirement.

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Lauri England's picture
Replies 5
Last reply 2/4/2013 - 9:21pm

I had another PET scan done on January 25, 2013 and a spot on my left rib cage 3 rib down from top lit up on the scan.  It was not there on the previous scan from April 2012.  They asked if I had some kind of rib injury since last April and I have not at all.  The doctor said it could be a bone fracture and he wants to do check xrays.  He said if it is a fracture it will show up on the xray, but if it is something else he is talking about a bone biopsy.  I am scared to death. I know I did not hurt my ribs by any accident or injury so I know that is not what it is. Any advice would be greatly appreciated.  I have not visited in a while as things have been going pretty good.  I had my 1 year anniversary from being off interferon September 2012 but I also know that is not a cure. I am just so very scarred....

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

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Kelly7's picture
Replies 5
Last reply 2/4/2013 - 6:51pm

Hi,

I was wondering if I could get your opinion on my brothers situation-

To sum up:

3 tumors on Lung, stage 4(original site was on back 4, 7, and 9 years ago)

IL2 (2 weeks in the hosptial, 20 bags total) February 2012

Yervoy (4 injections over 2.5 months, serious colitis in August-September) April-June 2012

Last update December 2012, still have one tumor, however it has shrunk a lot. Clear PET and CT scan on other locations.

Doctor suggested 3 options:

1. Wait and see

2. Surgery to remove the one tumor

3. Radiation

 

Wouldn't a combination of surgery and radiation be best?

 

THank you SOOOOOOO much for any advice you can give!

 

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Colleen66's picture
Replies 6
Last reply 2/4/2013 - 6:34pm
Replies by: POW, Colleen66, Gene_S, NYKaren

 

SUNSCREEN 
 
If I could offer you only one tip for the future,

sunscreen would be it. 
The long term benefits of sunscreen have been proved by scientists, 
whereas the rest of my advice has no basis more reliable than my own meandering experience 
I will dispense this advice now.

Enjoy the power and beauty of your youth, oh nevermind, 
you will not understand the power and beauty of your youth until they've faded. 
But trust me, in 20 years you’ll look back at photos of yourself 
and recall in a way you can’t grasp now, how much possibility lay before you 
and how fabulous you really looked, 
you are not as fat as you imagine.

Don’t worry about the future, or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. 
The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4pm on some idle Tuesday.

Do one thing everyday that scares you

Sing

Don’t be reckless with other people’s hearts, 
don’t put up with people who are reckless with yours.

Floss

Don’t waste your time on jealousy, sometimes you’re ahead, sometimes you’re behind, 
the race is long, and in the end, it’s only with yourself.

Remember the compliments you receive, forget the insults, 
if you succeed in doing this, tell me how.

Keep your old love letters, throw away your old bank statements.

Stretch

Don’t feel guilty if you don’t know what you want to do with your life, 
the most interesting people I know didn’t know at 22 
what they wanted to do with their lives, 
some of the most interesting 40 year olds I know still don’t.

Get plenty of calcium.

Be kind to your knees, you’ll miss them when they’re gone.

Maybe you’ll marry, maybe you won’t, maybe you’ll have children, maybe you won’t, 
Maybe you’ll divorce at 40, 
Maybe you’ll dance the funky chicken on your 75th wedding anniversary 
What ever you do, don’t congratulate yourself too much or berate yourself either 
Your choices are half chance, so are everybody else’s. 
Enjoy your body, use it every way you can, don’t be afraid of it, 
or what other people think of it, it’s the greatest instrument you’ll ever own

Dance, even if you have nowhere to do it but in your own living room.

Read the directions, even if you don’t follow them.

Do not read beauty magazines, they will only make you feel ugly.

Get to know your parents, you never know when they’ll be gone for good.

Be nice to your siblings, they are the best link to your past 
and the people most likely to stick with you in the future.

Understand that friends come and go, but for the precious few you should hold on. 
Work hard to bridge the gaps in geography and lifestyle because the older you get, 
the more you need the people you knew when you were young.

Live in New York City once, but leave before it makes you hard, 
Live in Northern California once, but leave before it makes you soft.

Travel.

Accept certain inalienable truths, prices will rise, politicians will philander, 
you too will get old, and when you do you’ll fantasize that when you were young 
prices were reasonable, politicians were noble and children respected their elders.

Respect your elders.

Don’t expect anyone else to support you. Maybe you have a trust fund, 
Maybe you have a wealthy spouse; but you never know when either one might run out.

Don’t mess too much with your hair, or by the time you're 40, it will look 85.

Be careful whose advice you buy, but, be patient with those who supply it. 
Advice is a form of nostalgia, dispensing it is a way of fishing the past from the disposal, wiping it off, 
painting over the ugly parts and recycling it for more than it’s worth.

But trust me on the sunscreen

Baz Luhrmann 

Live!

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NYKaren's picture
Replies 0

Hi Gene,

I posted an apology to you in the Vitamin D thread.  Then I went to your profile to message you that I'm terribly sorry about being rude to you,

and there's no "contact" link on your profile.  Not always sure how this stuff works. So please go look at that post :)

karen

Don't Stop Believing

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Anonymous's picture
Anonymous
Replies 14
Last reply 2/4/2013 - 10:35am
Replies by: Josh, domingoss, Anonymous, Janner

Hi there, this is my first post but need some help. Two years ago I had wide excision of my left upper arm for 2 melanoma sites (in situ). My arm has been hurting and burning on occasion, but has increased lately. I was wondering if anyone else has had pain so far out from surgery? I should also mention, I've already had a new mole appear right on the incision taken off which was negative. Thanks for listening

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bikerwife's picture
Replies 8
Last reply 2/3/2013 - 10:17pm

Lynn will be having his third gamma knife Monday. I have anxiety im scared. Please pray for us.

Im not going alone this time both our kids and my daughter in law are going. This scars me also they have never seen this head peice. Lynn sister is going so she can help us.

i know im not alone I have my MPIP family that share the same feelings and emotions.

Love and Hugs to you all. 

Belva

What God leads u to he will. Lead you through

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You all know how devastated we feel right now. My beautiful, loving 63-year old husband has Stage IV Melanoma with a tumor in his brain, several in pelvic area, one on adrenal gland, several along spine, and some small lung nodules. My God, how could this be? He's always been so strong and so healthy!

We've been to Dana Farber and met with a melanoma specialist. But is she the best? Does she know everything that will help my husband? Should I go somewhere else for another opinion? Anyone know anything about the Sylvester cancer center affiliated with University of Miami for melanoma treatments?

Radiation started Friday to pelvic area (he's in a lot of pain). Cyberknife will be performed on brain lesion maybe this coming week. Dana Farber neuro-oncologists agreed with this approach. Dana Farber melanoma doctor is suggesting Yervoy  in a week (if he has the right "markers?")??

What else do we need to know? So much to learn, so much to think about. All I know if that I want more years with this wonderful man! Please help!

Thankyou.

Janet

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mars27's picture
Replies 2
Last reply 2/3/2013 - 11:41am
Replies by: gep, POW

Hi there. Anyone out there on this trial or heard anything about it?

Thank you!

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