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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MaryEllen's picture
Replies 1
Last reply 6/25/2012 - 12:21am
Replies by: Swanee

Hi everyone,

I would like to know if anyone has done IPI with an autoimmune disease and how you have made out. Still trying to sort out treatment options. I have very light MS and am not gene positive. Was headed for IL-2 but now doctor is looking at IPI with my neurologist.

Many thanks to all,

MaryEllen

 

PS Thanks Eileen L for your quick answer. What did your Dr think about IPI and MS?

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deardad's picture
Replies 2
Last reply 6/24/2012 - 10:08am
Replies by: Linny, Gene_S

Hi Ipi is no longer FDA approved in Australia which means we would have to pay a total of $120,000AUD for the treatment.

My dad has brain mets x 7, liver x 4, lung x 2, spleen x 3 and subcutaneous spots x 3. Over all they are all still small under 10mm I believe.

Does anyone recommend this drug? I know it won't cure him but a few on this board have had some success with it, what are your thoughts?

Thanks in advance.

Nahmi

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Origin adfAnyHere'dsf.......................................................
Anyone else see/hear about this?  Is this common practice at all school districts across the country? 

Students sunburned at school field day

Originally printed at http://www.kval.com/news/health/Students-sunburned-at-school-field-day-159782085.html

By Halley Griffin KOMO Communities reporter June 20, 2012

TACOMA, Wash. - Jesse Michener was horrified Tuesday evening when she returned home from work to find two of her three daughters severely sunburned after field day at Point Defiance Elementary School.

It was raining when the girls left for school Tuesday morning, but the sun came out midday and ended up burning Violet and Zoe so severely that their mother took them to Tacoma General Hospital that evening.

Tacoma Public Schools policy prohibits teachers from putting sunscreen on students. Students can apply their own, but are required to have a doctor's note authorizing them to use it.

District spokesman Dan Voelpel says the doctor's note policy is actually based on a statewide law, and is aimed at preventing kids from sharing sunscreen with someone who might have an allergy. He says there are many students in the district with allergies to common additives in sunscreens and lotions.

Parents are encouraged to apply sunscreen before sending their children to school, or dress them appropriately for sunny weather.

Michener takes full responsibility for her decision not to put sunscreen on the girls before they left the house, but says ultimately, that point is irrelevant. For the sunscreen to be effective, it would have had to be reapplied midday anyway.

Michener says she has trouble understanding why the adults who reportedly commented on her daughters' worsening burns didn't simply remove them from the sun and have them wait inside for field day to finish, or give Michener a call and ask her to stop by with sunscreen for her children.

"There's a break in common sense," she says. "If they were over a hive of bees, you would remove them from the problem."

One of her daughters has a documented type of albinism - and Michener says teachers and administrators at the school are well-aware of her sensitivity.

Today Violet and Zoe are home from school, with peeling faces, headaches and chills.

Michener spent her morning writing letters to the district and school board members asking for a more "parent-friendly" policy.

"I mean having a doctor's note, that's the most unintuitive policy I've ever heard of, and not only that, it's impractical," she said.

Depending on a family's medical coverage, that bottle of sunscreen could end up costing quite a bit.

Michener says she's spoken with other parents whose children were also burned during field day, and at least one told her that she was considering filing a complaint with the district.

She says she'd like the district to consider a policy change, enabling staff to make decisions in the best interest of their students, or consider allowing parents to sign some sort of waiver allowing staff to apply sunscreen to their children.

Voelpel says a change would require a district-wide policy change.

"In the end, this is not about a sunburn," Michener says. "It's about the administration's inability to act when a child is in danger." 

 

 

Luke 1:37

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Cooper's picture
Replies 3
Last reply 8/8/2014 - 1:28pm

I haven't seen his posts for a while and hope he's ok!

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momof2kids's picture
Replies 5
Last reply 7/16/2013 - 10:49pm

Anyone heard from Lisa13?  Haven't seen her post anywhere lately, hoping some things got taken care of with the brain tumors?!

Lisa if you're out there, or if anyone has talked to her, let us know!

 

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Fighting Mama's picture
Replies 11
Last reply 6/27/2012 - 6:34pm

The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently...I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn. 

What has worked or helped for other folks on Zel? My hubby had a special UV protective tint applied to our vehicle windows, I have purchased some UVP clothing...but I refuse to stay inside and not enjoy summer time with my family!

I would love to hear from others going through this.

Best,

Amy

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Erinmay22's picture
Replies 7
Last reply 6/26/2012 - 12:06am

Hey folks - I'm just curious how long it took before you started seeing other skin growths from Zelboraf?  I've started to notice a lot of bumps on my skin.  You can kind of see them on my hand here (in the middle top towards the knuckles).  They are fairly flat and clear.  Just curious if other folks have seen the same thing.  I did notice some of these though before I started on Z.  

I've also noticed since I had my rash really bad last week what appear to be more red/cherry marks (maybe Cheery angioma's?).  I'll see my oncologist Friday and Derm the following week so I'll ask them about these spots then.  Was just wondering what folks have experienced.  I am now on a reduced dose.   Feeling pretty good except for the darn joint pain.  

Have a great weekend everyone!

Erin

 

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Francesca's picture
Replies 20
Last reply 3/20/2016 - 7:23pm
Replies by: Anonymous, Janner, Francesca, Cooper, LynnLuc, 9 Sandy

Hi,

 

I am 33 year old Canadian newly diagnosed Stage 1B, had my WLE and SLNB last month and while all the tissue and nodes were clear I still have some questions about original pathology.

Originally, I had a shave biopsy which was bisected; one pathologist reported 1 mm and other 1.45 not ulcerated Clark 3  (one patholgist said deeper levels of skin show involvement of deep and lateral resection margins which were not reviewed by other pathologist) Surgeon didnt seem concerned when I pointed this out. 

Since it was a shave biopsy I  expected depth to increase but onc surgeon told me there was absolutely no evidence of melanoma in wle tissue so depth remains 1.45 (seems like this never happens with shave biopsies, am I right). Surgeon said they throughly examine tissue with hundreds of slides and hence 3 week wait for results!! She said I should be reassured it didnt have any further melanoma in wle. But somehow I am not.

Histologic Type: Other - Lentiginous. Now is this the same as "lentigo maligna melanoma" because that is rare  associated with elderly/sun damaged and slow evolving which is not my case. Noticed it on posterior upper shoulder/arm in shower 6 months ago. It was brown and symmetrical ( glad I insisted I get it off soon!)

I have also read its difficult to decipher between lentigo maligna and lentigo maligna melanoma. Just seems funny because pics Ive seen online dont look anything at all like mine.

Mitosis is listed as 3 by one pathologist and >1mm2 by the other. Peripherl margins say both involved by invasive melanoma and involved by melanoma in situ. Even though I should be relatively pleased with my surgery outcome (though realize no guarantee) I am now wondering if I should ask for another pathologist to examine orginal tumor. Will it change my staging - probably not but I am so scared because 1.45 seems relatively risky. What is your opinion? Thanks and best wishes to you all.

Francesca

 

 

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Hi,

 

I am 33 year old Canadian newly diagnosed Stage 1B, had my WLE and SLNB last month and while all the tissue and nodes were clear I still have some questions about original pathology.

Originally, I had a shave biopsy which was bisected; one pathologist reported 1 mm and other 1.45 not ulcerated Clark 3  (one patholgist said deeper levels of skin show involvement of deep and lateral resection margins which were not reviewed by other pathologist) Surgeon didnt seem concerned when I pointed this out. 

Since it was a shave biopsy I  expected depth to increase but onc surgeon told me there was absolutely no evidence of melanoma in wle tissue so depth remains 1.45 (seems like this never happens with shave biopsies, am I right). Surgeon said they throughly examine tissue with hundreds of slides and hence 3 week wait for results!! She said I should be reassured it didnt have any further melanoma in wle. But somehow I am not.

Histologic Type: Other - Lentiginous. Now is this the same as "lentigo maligna melanoma" because that is rare  associated with elderly/sun damaged and slow evolving which is not my case. Noticed it on posterior upper shoulder/arm in shower 6 months ago. It was brown and symmetrical ( glad I insisted I get it off soon!)

I have also read its difficult to decipher between lentigo maligna and lentigo maligna melanoma. Just seems funny because pics Ive seen online dont look anything at all like mine.

Mitosis is listed as 3 by one pathologist and >1mm2 by the other. Peripherl margins say both involved by invasive melanoma and involved by melanoma in situ. Even though I should be relatively pleased with my surgery outcome (though realize no guarantee) I am now wondering if I should ask for another pathologist to examine orginal tumor. Will it change my staging - probably not but I am so scared because 1.45 seems relatively risky. What is your opinion? Thanks and best wishes to you all.

Francesca

 

 

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lyndaloo's picture
Replies 5
Last reply 6/22/2012 - 7:23pm

Hello - My husband had lung surgery Feb/11 and a craniotomy June/11 with WBR and targeted radiation to other brain lesions.  His 4th (last) IPI infusion was Feb/12. This weeks scan results showed all body tumors and skin tumors have disappeared, the brain is also clear except for one lesion that they believe is responding to IPI and is showing signs of "exploding" and breaking apart.  This is encouraging news, what a blessing!!!!  The ipi treatment caused alot of edema in the brain but happy to report he is off all steroids now.  He is now left with poor eyesight.  We are seeing an eye doc today and another eye doc on Monday to see if they can help him.  We don't know if this is the fallout of the brain radiation since one of the tumors was near the ocular nerve, or if the ipi has caused this.  I am hoping they can help him, as he cannot work/drive with his vision impairment and is self employed.  All this aside, we are overjoyed with the results!!!

Loving wife Lyndaloo

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The Melanoma Research Foundation (MRF) invites you to join a discussion of the factors behind the alarming increases in melanoma rates in the U.S. population, particularly among young people; the role of legislation and regulation in reducing the risk of diagnosis; and important scientific updates from the recent American Society of Clinical Oncology (ASCO) annual meeting.

When: Wednesday, June 27th, 1:30-2:30pm

Where: Rayburn Office Building, Room #2218

Scheduled speakers include:

  • Representatives Brian Bilbray(R-CA), Carolyn Maloney (D-NY), Rosa DeLauro (D-CT) and Charlie Dent (R-PA)

 

  • Dr. Jeffrey Gershenwaldof the MD Anderson Cancer Center in Texas who will provide an update on the 2012 ASCO conference and the most promising and immediate opportunities for treatment breakthroughs

 

  • Diana Dreman, former Miss Colorado, and her mother, Rebecca King-Dreman, former Miss Colorado, former Miss America and Stage IV melanoma survivor, who will discuss the personal impact of melanoma and the urgency of discovering new treatments

 

Please RSVPto the MRF at 202-347-9675 or by email at info@melanoma.org.

  If you are not in DC, you can still participate by contacting your member of Congress and urging them to attend.

 

Thank you!

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Rdmstm's picture
Replies 3
Last reply 6/23/2012 - 12:41am
Replies by: Cindy33, gabsound, kthekhal

Yesterday I visited a wonderful dermatological surgeon at the Univ. of Penn. regarding my recent diagnosis of insitu. Since I traveled over an hour to see him he was nice enough to perform a second excision yesterday, so I wouldn't have to make an additional trip later. While was there I had him look at a mole on my leg that looks 'wrong' to me. He said since my recent diagnosis of insitu, I could have it removed or have my local dermatologist watch it. I asked him if he could remove it and he stated that I need to visit my local dermatologist. I visited my dermatologist 4 days ago and she examined this mole and said it seemed to look fine. This mole is on my body pictures take 1 year ago, but I think it NOW looks different. I have an appointment in 6 days to have a biopsy done of this suspicious mole. I am fraught with worry that this mole will come back as a more advanced stage of melanoma and still struggling to believe this is happening....

Any words of advice are extremely appreciated!!! Thank you.

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gabsound's picture
Replies 4
Last reply 6/22/2012 - 11:56pm

Hi,

My last scans showed mostly good news. No growth in any lung lesions, bones look pretty good. Still have lesions in the liver, but less active. One liver lesion did grow and show increased activity on the PET.

Dr thinks the Yervoy could very well continue to work and we could watch and wait. He also offers to do another course of Yervoy, but wants to irradiate the lesion in the liver that is growing.

Has anyone had this done in their liver? Wondering how painful and what to expect. The oncologist said they will likely do a biopsy first then they have to put in some markers around the lesion for the machine to track. From what I read, after that it's 1 to 5 treatments.

I had the first dose of second round of Yervoy yesterday.

Also had our first real vacation since Dx in Jan 2011. We spent 10 days in Maine. Beautiful state! Also went to the museum of Fine Arts in Boston. Very relaxing. It was hard to see all the pale people (like me) on the beach sitting in the sun. I still enjoyed the beach , but did it late in the day or early in the am with sunscreen, a hat, pants and long sleeves.

Julie in Las Vegas

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jag's picture
Replies 17
Last reply 7/1/2012 - 3:35pm

Well, 9 years and 2 days ago, I was diagnosed with melanoma on my birthday(or rebirthday-depending on how you see it). Life had plenty of rollercoasters since then-1 lung wedge biopsy, 6 rounds of biochemotherapy, 4 rounds of interleukin 2, complete removal of my left lung. 6 brain surgeries, 2 SRS procedures, 1 patch radiation, and finally out of the hospital for almost 2 years. In the mean time, I have seen all of the major national parks, gotten engaged- then married, started my own veterinary housecall service, and just this year we had our first son and named him after my oncologist-Jedd.
Life has turned around and improved immensly for me, yet I read here nearly everyday. I take my antiseizure meds everyday-but I'm slowly tapering.
Next year I am considering running the NY marathon, not just for me, but for all of the other patients who haven't made it, for all of the people trying to beat it, and to thank God for the gift of life.
God Bless you all and much hope for NED in the future.

Insert Generic Inspirational Motto Here

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bikerwife's picture
Replies 8
Last reply 6/22/2012 - 6:45pm

Lynn had his 12 week scans after yervoy they showed some shrank and went away but one in chest cavity grew a little tumors on kidney stayed the same our dr said we could wait 2 months and scan again but he felt waiting to see if they grow. Isn't a good idea so he would prefer that lynn start zelobraf. So Monday he will start. I'm very scared read so many things on here about side effects.

I told the dr I had read that it only works for 7 to 8 months he said all patients are different and he had a patient that had been on it for 2 years. He also said it was the miracle drug.

Dr. Shirai just got back from a conference in chicago and that there is somr trails going on that look very promising and he would be starting them at musc.

I guess all we can do is live day to day make the best of it and hope for the miracles God has promised us. I pray for this board daily may God bless each of you.

Thanks for listening everybody I'm one scared worried wife. I love my Lynn so much. I wish I could just reach out and talk to some of y'all goes you truly know what I'm feeling any help and advice would be appreciated.

God Bless

What God leads u to he will. Lead you through

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