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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jag's picture
Replies 1
Last reply 5/23/2011 - 4:49pm
Replies by: Rebecca and Bob

BRAF trial?

if so, please elaborate on your: response/mutation/etc.

Insert Generic Inspirational Motto Here

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Carol Taylor's picture
Replies 7
Last reply 5/23/2011 - 7:42pm

Sonce we've had so many newly diagnosed melanoma warriors join our ranks lately, all needing the same general info, I thought it might be helpful to corrale general stuff. Please add to the list.

1. Remember we're all different. Get advice and opinions from good, reliable sources, like here, but then, know yourself. Know your body, your medical history, what you can tolerate and what you can't. Make informed decisions, as best as you can realizing nothing is guaranteed, then proceed and don't look back. Don't second guess yourself. It won't help. The clock can't be turned back, so do what YOU think is best for YOU.

2, Do that under the care of melanoma specialists! I don't care if your general oncologist is your dear favorite uncle, get a referral and be treated by a melanoma specialist. That is vital! Your dermatologist, oncologist should you eed one, and surgical oncologist should ALL be melanoma specialists.

3. Don't let fear, panic, or anger rule the day. They are all normal reactions to a new diagnosis and all can be great motivators, BUT, they can work against you and paralyze instead of spur on. Attitude is key and a positive attitude is actually scientifically proven to be beneficial in a multitide of ways and an attitude of gratefulness. You can't control melanoma BUT you CAN control how you respond to this. It may take you a lot of selk-discipline to be positive but you can learn, It may come easily. It will be to your benefit to keep a good attitude.

4.Remember, your pharmacist is also a valuable resource! I'm married to one, mother to another, and sister-in-law to one. There's a mutant gene in my husband's family...they aren't the only ones, so I've seen these folks up close and personal in a way many of you haven't. They KNOW their drug interactions! Our doctors DON'T.  Shocking, but true. They know what side-effects you might experiience and can counsel you about them and when you need to call your doctor.

5. Because of number 4, please make sure you have ONE pharmacy you deal with. You have many doctors and maybe many meds. You want the best prices on all of them and that may mean you take different prescriptions to different pharmacies, or even order online. One, online, you don't get the professional counsel and you're short-changing yourself. Multiple pharmacies and online shopping both will present another problem...all your meds aren't listed together so know one is able to spot possible drug interractions that can cause real problems. It may cost you more in dollars to have all your scrips filled at one place, but you'll save in other ways that you can't put a price tag on...unless you experience a costly drug interaction problem that could have been caught and prevented had one pharmacy known ALL your meds.

Group, please add.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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rbruce's picture
Replies 12
Last reply 10/9/2011 - 3:46am

So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response.  Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California.  I had decided on a chemo trial to start thursday, but I'm having major second thoughts.  This will be my first treatment.  pet/ct 2 weeks ago showed a number of small lung tumors, largest grew from 8 mm to 1.1cm.  I like what I've read about Til therapy, but need at least a 2cm tumor to qualify.  Also, newly found bone met in a rib and lymph node under my armpit lighting up. Any comments/experiences would be most welcome.  Thank you.  Robert 

The circumstances of our lives have as much power as we choose to give them. David McNally

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gtown's picture
Replies 4
Last reply 5/23/2011 - 9:56pm

Hey what's up.

I'm still awaiting biopsy results from tumor removal ( 1.9 mm approx, nodular, non-ulcerated 7 mm mitotic rate) and SNL from armpit area. The doctors at Penn hospital said they wouldn't advise interferon if it hasn't progressed to the lymph nodes. They really wouldn't discuss any therapy until the results come back, which I understand. I took interferon or pegintron for 6 months to cure Hep C and was able to work construction as well as run about 15 miles a week. I had to inject myself once a week. I want to know if the interfveron treatment  for melanoma is similiar to this? Ihave read about high dose interferon where they give you an IV for 5 days straight and then you self dose, but I can't find any info other than the basics so I decided to come to the experts to get the lowdown on this therapy. Any and all info concerning this would be greatly appreciated.

                                                                                                        Thanks

                                                                                                          Gtown    

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annabanna's picture
Replies 6
Last reply 6/1/2011 - 7:11am

went to dermatologist and got pathology report showed malignant melanoma

brealow depth 1.05mm

clarks level IV

regression absent

luceration absent

mitoses less tha 1/mm*2

dermatologist said that will have to wait to see surgeron to find out more and he does not think waiting to june 2nd is a problem the mole is on my back

tina

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Charlotte C's picture
Replies 3
Last reply 5/22/2011 - 6:36pm

I could not log in as Char C so I had to put my full name. For those of you who remember me, I was wife of Bill C.
I haven't logged in for a long while....

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LisaMH's picture
Replies 8
Last reply 10/9/2014 - 9:43am
Replies by: DMU, FormerCaregiver, Anonymous, DonW, slpinion, Carol Taylor

Hi all.  Newbie here.  I got the call last week that my biopsy showed melanoma.  The details of my pathology report:

0.6 mm depth

non-ulcerated

Clark's Level II

1 mitosis

Non-brisk lymphocytic inflammation

 

I have an appointment with a general surgeon tomorrow morning.  The pathology report suggests excising with at *least* 1 cm margins, and from some of the research I've done, it looks like 2 cm might be best due to the mitosis.  I plan to ask the surgeon about that, but is there anything else I should question?

I have no idea what to expect at tomorrow's appointment and I'm pretty nervous.

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julieannveronica's picture
Replies 4
Last reply 5/24/2011 - 12:08am

My 73 year old mom had a craniotomy in February.  It was stage 4 melanoma.  She had a mole removed from her neck in 2003.  after 10 full cranium radiations and 3 cyber knife shots to a small spot on her left lung - her PET and MRI came back free and clear on Wednesday.  She was very flat when she heard the news.  The next day she seemed happier and told me it was starting to sink in.  On Friday she seemed more disoriented and sad/flat.  Confused.  she is tired and not eating much.  Someone that had had the same operation 4 or more times said she needs some Ativan.  Any feedback?  she is on Leukine - 14 days on and 14 off.  no reactions to the leukine.  What do you think?  thanks

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My 73 year old mom had a craniotomy in February.  It was stage 4 melanoma.  She had a mole removed from her neck in 2003.  after 10 full cranium radiations and 3 cyber knife shots to a small spot on her left lung - her PET and MRI came back free and clear on Wednesday.  She was very flat when she heard the news.  The next day she seemed happier and told me it was starting to sink in.  On Friday she seemed more disoriented and sad/flat.  Confused.  she is tired and not eating much.  Someone that had had the same operation 4 or more times said she needs some Ativan.  Any feedback?  she is on Leukine - 14 days on and 14 off.  no reactions to the leukine.  What do you think?  thanks

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Rendergirl's picture
Replies 13
Last reply 5/23/2011 - 2:43pm

I found the Bristol Myers site that says Yervoy is now available as a prescription. How come my oncologist didn't tell me that? I don't hear anyone else talking about it either. The only way to get it seems to be to enroll in a trial where you only have 50-50 chance of getting the drug. Has anyone gotten it with a prescription?

Also, I looked up the side effects and they seem pretty serious. Anyone had Yervoy and can tell me what you side effects were like?

 

Becca

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TracyLee's picture
Replies 4
Last reply 5/22/2011 - 6:39pm
Replies by: dian in spokane, nicoli, Anonymous, Carol Taylor

Hi y'all,

Definitely liking the positive posse support from my last thread!

I am able to have Ipi here locally, I'm probably the FIRST one they've done. So, I expect I will be very well monitored! My local Dr. Peri will closely coordinate with Dr. Sharfman at Johns Hopkins.

I'm so happy not to have to haul across the Bay Bridge in summer beach traffic. God is providing well for me. I go in on Monday, but I am pretty sure that is just pre-planning to get ready to begin ipi in the next week or so.

Thanks to each of you in (or just watching) the posse/ninjas/warriors group! Definitely the best thing I have going is having y'all to vent to and bounce questions off of you!

Praying that everyone on this board has good news in the coming days.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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amyb's_sister's picture
Replies 31
Last reply 6/1/2011 - 1:08pm

Amy's battle with melanoma ended today, 05/21/2011. A long and courageous fight! A True Warrior! We know that Amy touched many people with her determination and spirit to overcome this disease and you touched her. For that we say Thank You! Please remember Dennis, Cayla, and Dylan as they begin a new battle. Your thoughts and prayers are part of what armed Amy in her fight. Remember her Faith, Courage, and Relentless Determination to learn and reach out to others in their battles as well. We truly thank you all!

Amy's Mom, Dad, and Sisters 

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sharmon's picture
Replies 10
Last reply 5/22/2011 - 7:14pm
Replies by: CatLvrBBW, boot2aboot, MichaelFL, SharonK, Cate, Bonnie Lea, Anonymous

I just got word the Amy is Chillin' with Jesus, no longer hurting,

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Part of my husband Don's new pain regimen is OxyContin for long term pain control and Oxycodone for breakthrough pain. It seems, however, that with every new dose of the OxyContin, he develops a low grade fever (99-100) that has to be controlled with Tylenol.

Has anyone else experienced this side effect, and if so, did it go away as you adjusted to the medicine?

He is currently only being treated for pain; we are waiting for BRAF test result. (I did call doctor on call and they weren't worried about it as a one time occurence because the fever is low and he's not on any treatment that would affect his white blood counts yet, but this seems to be a pattern.)

Thanks!

Michelle, wife to Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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KRob's picture
Replies 1
Last reply 5/22/2011 - 2:21pm
Replies by: boot2aboot

Fellow Melanoma Community Members:

As you may have already heard from MRF, a small group of us from the Midwest region are heading to D.C. to lobby our representatives to enact stricter legislation regarding tanning bed usage. Two of us from Ohio will be speaking to our state's congressmen: Reps. Pat Tiberi, Steve Austria, and Sen. Sherrod Brown. 

I would love to share not only my voice but some of yours as well. If you would like to be part of this effort, please send me a brief summary of your case history (no more than half a page) and a personal message (one paragraph max) to our representatives in Washington that I can share to help persuade them to act on this most important of legislative actions.

(my email address is in my profile - please send all testimonies to that!)

Thanks!

K.Roberts

 

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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