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 2
Last reply 6/25/2012 - 4:21pm
Replies by: Snickers60, Anonymous

Wayne and I have found www.houstongroundangels.org and they are FABULOUS !

It only cost a "THANK YOU" -  and they are precious people.    We used them the first time last trip and they were

very lovely, kind and TIMELY people.   Oh for Joy, as they celebrated with us over our good news.   (and they don't wear perfume,

colgone - big for us with the treatment and my chemical allergies)

The lady who picked us up had family who has had Melanoma.  Her husband had had it...MOLE  - and his sister had died of it,

so when we got the news, that Wayne was "NED" -  I called her.   I said, I know I'm not suppose to use your personal number but I had to tell you this in lieu

of your family's history !   She was soooo grateful I did and so happy for us, and said she would look for us on the board for the next time

we came to Houston to be our GROUND ANGEL.     She was a hoot and we laughed the entire trip........crying laughing that is.  What

great endorphins.   We really hit it off. 

We were paying around $70-80 for a round trip to MDA from Houston Hobby by cab - shuttle will cost you that too, and they are soooo rough

it will undo your spine.   Now it only cost a THANK YOU !    This amount really adds up when you know you will be going there once a

month for the rest of your life !

I hope and pray this blesses and helps someone.

Nancy (Devoted wife of #3 time 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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Guten Tag's picture
Replies 13
Last reply 7/1/2012 - 2:55pm

I finally registred an account on melanoma.org and I thought I would say hello and give a quick update.  I've been NED since my last surgery and radiation treatment sometime in 2003.  For those of you who don't know, I was originally diagnosed as either Stage IIIC or Stage IV -- I had a total of 16 of 19 lymph nodes from my right axilla test positive for melanoma.  

I had  3 surgeries: a surgical biopsy, a WLE, and a final surgery (I had a recurrence about a year after original dx).  I did the high dose interferon for the first month, but did not do the 1 year long treatment.

I feel extremely fortunate to be alive and to also have a great quality of life.  Other than a few scars, I haven't had any complications, except that lymphedema in my right (also dominant) arm showed up last year -- over 7 years after final surgery and radiation.  It was a bit surprising, but I won't complain, given that I had a canteloupe sized mass removed on my 2nd surgery, plus radiation treatment, I was lucky to not have it right away.

I'm back in Austin, TX and a full time student at the University of Texas -- studying Psychology and Computer Science -- with about 1 year left.  I have a girlfriend of a little over 3 years now, who has a 9 year old daughter.  I adore them both.  I've also started a new company, Predictable Data, and it is going well.

OK, just wanted to say hello to old friend and give an update. 

-Dwayne

Be so good they can't ignore you. -Steve Martin

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Anonymous's picture
Replies 8
Last reply 6/25/2012 - 9:11am
Replies by: JerryfromFauq, Minnesota, Anonymous, Charlie S, Linny

A friend of mine just send me this information

New Report About Melanoma Statistics: “9 of 10 Melanoma Surgeries Not Necessary”

Is it really true? My wife has an ugly scar in her face after a surgery in a general clinic. Maybe she did a mistake not to get a second opinion from a specialized?

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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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