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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Erinmay22's picture
Replies 5
Last reply 3/9/2011 - 10:57am

On Tuesday I under went a VAT's procedure to do a biopsy on one of the many tiny (size 2-4 mm) nodules on my lungs.  They removed one spot on my left lung.  Initial tests shows malignant cells (per my surgeon) but they are waiting for pathology to confirm what they are.  I was recently staged a 3b in November.  I was trying to qualify for Ipi trial when these spots showed up on a CT scan. 

So now I am starting to research what my options may be.  Any one have experience and info on what they did?  I am should hear from my surgeon next week some time on what the pathology report said - then I'm sure they will have some options for me as well.  But I want to do some research first.  I have no symptoms, these were just found from the CT scan. 

Thanks.  I'm sure I should be freaking out about this even more - maybe it's because I'm still on pain meds ;)  or if I have figured I can't change the results so I'll take it one day at time. 

Thanks!

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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Karen wife of Phil's picture
Replies 2
Last reply 3/6/2011 - 3:48am
Replies by: FormerCaregiver, Fen

We just received the news that Phil doesn't have the B-RAF mutation. My husband's phone died during the conversation with the doc, so not sure what he has up his sleeve. We have an appointment on the 15th so will find out some options then, And the research nurse is going to touch base with us on Monday. We have done IL2, ipi, OX 40 something or other, a bit of radiation. His mets are in his lung and in his intestinal tract. We know they are growing because his pain has increased to the point that he is taking more pain meds. We are kind of at a loss at this point since all the hopeful treatments haven't panned out. The doc mentioned we would look at some other trials. I am just beginning to see mention of this Eisai and MEK/P13. Could someone post some links so I can check these out to talk to the doc about when we see him in a week. We are trying to stay positive but this was a tough blow. We need a little something to hang on to. Thanks for any info any one can give me.

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KellieSue's picture
Replies 1
Last reply 3/5/2011 - 8:16pm
Replies by: Fen

Just started B-RAF last week.

I of course will speak to my oncologist next week about this but I was wondering if anyone knows if having elective surgery while on B-RAF would be allowed.  I've read through all the paperwork and it doesn't say anything in there.

I guess it's not really elective, except for the timing. I would be electing to have it done now if I could, but I'm not looking to get butt cheek implants for vanity sake.

I had a unilateral mastecomy due to melanoma in the breast back in 2007, I had one follow up surgery in 2009 to replace the tissue expander with a real implant. I've never finished my reconstruction. I would like to make the reconstructed side look "real" and make the other side match, if you know what I mean!  :D

I imagine it would be a fairly simple surgery(from what I remember my plastic surgeon telling me at the time) and I know it's covered under my insurance as it's part of the reconstruction process I started years ago and fairly simple recovery(at least compared to some of my surgeries).

Any thoughts?

 

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Hello-With 7 tumors including 1 on lung, my brother was put on Braf/GSK 9 months ago.  All have dissapeared except one in pelvic area-which grew and therefore, he failed Braf according to trial standards.  So his Dr. at Sara Cannon put him on GSK Braf/MEK combo.  All PET was clear except the one reamining stubborn tumor and we are hoping this Braf/MEK will knock it out.  No side effects - he feels great, but once again so mysterious why all six were eliminated and yet one still remains.  We are so close!

Best of luck to all and feel free to contact direct.

ThinkSpringSnowbirds!!!

MrsMarilyn from Michigan

sister of Gary (from Florida stage IV)

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Doug-Pepper's picture
Replies 3
Last reply 3/5/2011 - 6:51pm

I am praying for so many that are affected by this horrible disease! We are still juicing, eating more natural foods & taking supplements. Started a bible study on "The Seven Pillars of Health" by Don Colbert. Anyone have any suggestions on Alkaline water filters? Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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emilypen's picture
Replies 6
Last reply 3/5/2011 - 3:38pm
Replies by: KellieSue, P Brown, Anonymous, tennisgirl, mrsmarilyn

Hi All,

My hubby was on a MEK/P13k trial and after having an adverse side effect he was taken off the study. One of the tumours in his back has grown too close to his spine so its surgery on Tuesday, followed by some radiation and then on to PLX-4032. He got the dacarbazine arm of the study last summer so with expanded access he is allowed to get on the Roche B-Raf drug right away.

So what I'm wondering is how many people on this board are on the drug now and for how long? and if you failed off B-RAF how long were you on the drug?

We were hoping for a B-RAF/IPI combo trial but they don't have that set up yet, our onc says he expects it soon.

Thanks,

Emily

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cheryl brodersen's picture
Replies 5
Last reply 7/2/2011 - 9:38am

My husband, Steve,  has had 3 treatments, a week break, and starts the next three treatments next week...and then the scan.

Anyone have any experiences with this combo? He has been pretty sick, but his doctor said that is to be expected after the 18 rounds of DTIC he went through last year (in 14 months). He was certainly never this ill and unable to do anything. The Neulasta seems to have kicked in and he's back to being up and around.

I would love to hear anything about the A/A treatment, good or bad.

Thanks,

Cheryl, wife of Steve, Stg. IV

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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cheryl brodersen's picture
Replies 7
Last reply 3/21/2011 - 5:36am

I was on this bb in the spring when my husband, Steve's scan showed a lit up right tonsil. Even though there are only about 30 cases of MM going to the tonsil, his was indeed metastatic. Just so everyone knows, it can happen so don't assume it's an infection (as we first did) just because it is so rare. And a tonsillectomy after 50 is NOT FUN. Good luck to all!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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steelergirl's picture
Replies 1
Last reply 3/5/2011 - 4:23am
Replies by: Fen

I haven't been on in awhile.  I had two scares last year that made me think my cancer was back and I was no longer NED.  I was fine.  In January, I had a physical and my doctor found a polyp on my cervix.  I saw a GYN Oncologist yesterday and he couldn't remove it while I was in his office.  I will have it surgically removed on April 1, only a 30 minute procedure.  February 1, I had  my 6  month CT scan check up.  I got the results on Monday.  A nodule in my left lung has grown from 3.2 mm to 5 mm.  I have an enlarges lymph node in my left pelvic area, and I have a cyst on my right ovary.  I will be having a PET/CT Scan this coming Monday afternoon.

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Does anyone else know about chitosan being used to treat meelanoma successfully?  I just heard about it today and was told UCSF Mt. Zion Melanoma Center is selling it and the friend of the woman that told me about has had melanoma remission using it.  I am going to call UCSF Monday but in the meantime was hoping for some info.  Thanks.

Blessings, Shari

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FYI..  It looks like it will be an interesting day... Jerry from Cape Cod

Call to Action Conference, Saturday, March 19, 10-2, MIT Endicott House, Dedham, MA

Did you know that 750,000 people are living with melanoma in this country and another 4 million first degree relatives are touched by this disease? Can you just imagine the impact of patients, survivors and relatives moving out into their communities, sharing their stories and delivering life saving messages about the importance of prevention and early detection? How empowering to those whose lives are forever changed with melanoma and how life changing is the message when someone is diagnosed early and cured of melanoma.

MFNE is having their first "Call to Action Conference on Saturday, March 19 from 10 - 2 at the MIT Endicott House in Dedham. 

Hosted by MFNE Executive Director Deb Girard, and Alan Geller, chair of the Foundation’s Medical Advisory Board, the conference will cover the following:

▪    If you are a melanoma survivor at any stage, a family member or have lost a loved one from melanoma, you can make a difference by sharing your story and delivering the important message about early detection and prevention to your community

▪    You can become part of our legislative initiative to ban indoor tanning

▪    Strategies and hands-on learning will be provided to help you create powerful presentations that communicate your passion about the importance of reducing the risk of melanoma

This is an opportunity to find out how to make your voice heard and network with others who share your passion.
 

Pre-registration is required.  You can register by emailing Deb Girard at dgirard@mfne.org

Feel free to contact Deb with any questions or concerns at 800.557.6352 or dgirard@mfne.org.

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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mom3girlsFL's picture
Replies 2
Last reply 3/16/2011 - 10:15am
Replies by: Lisa13, RMcLegal

Does the amout of nodes involved affect the progression and prognosis?  I've had two groin surgeries - 1st 9/11 nodes were melanoma and 2nd 4/5 were melanoma.  I had a clear PET in nov 2010 after discovering the recurrence in september (PET) while on interferon.  Guess I'm just working myself into a frenzy before my oncology appt on Monday and knowing another scan is around the corner!

Thanks for your help. Laurie

Do not fear tomorrow, God is already there.

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RMcLegal's picture
Replies 3
Last reply 3/5/2011 - 4:16am
Replies by: Fen, RMcLegal, Erica A

Has anyone else felt like their brain was hijacked during chemotherapy, taken for a long joyride, and later returned with some dings and dents?   I underwent biochemotherapy treatments (a combo of interferon, interleukin-2, dacarbazine, vinblastin, and cisplatin) in 2003 following a Stage IIIc diagnosis.  I've blogged a bit about my lingering "chemo brain" challenges at www.hotelmelanoma.blogspot.com.   I'd love to hear from others who've experienced similar "challenges" and read your stories about the challenges you've experienced and how you try to manage them.  Thanks, and best wishes.

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Replies by: Rocklove, jbergman

Hello Everyone,

Bernhard just completed his second round of leukine on March 1.  A blood test taken to monitor his potassium level (high) showed something new = a creatinine level of 5.85; it was 1.3 January 19, before he started round one of leukine.  This creatinine level indicates possible kidney failure, B is in the hospital now getting the kidneys hydrated, and the condition reversed, we hope.  All doctors have stopped the two medications B has taken for years for hypertension and the next round of leukine may be delayed until more is known. 

So, does anyone have any experience with leukine and either of these two drugs, Lisinopril/Zestril, or Hydrochlorothiazid?  The doctors are stumped.

Thanks for any advice, experiences.

Julia

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Bob Hilley's picture
Replies 8
Last reply 3/9/2011 - 3:54pm

I'm new here in terms of posting but have checked the site off and on since I was first diagnosed in 2000.  I won't go into all the details because I have fairly specific issue that I would like help with.  My MM was in my left leg and when another showed up not so far away from the primary, I got to be part of an isolated limb perfusion clinical trial at MD Anderson.  That went well and I was NED for three more years with a couple of sub-q's and some sarcoid tissue over the next few years---but no organ involvement until recently.  The doctors did an endoscopy because of some gastric problems.  The visual showed masses of anomolous tissue while the biopsy confirmed melanoma.  I had a PET last week.  The PET radiologist says that the scan shows involvement of the duodenum.  My surgical oncologist's interpretation is that there is a 6x7-cm mass between my duodenum and liver with infiltration into both.  Because of the nerves and blood vessels in the area, he has declared it inoperable until it can be reduced with radiation. 

I met with two radiologists today.  One said that he wouldn't risk doing radiation because of the likelihood of damaging the liver.  The other wants to start radiation and chemo next Tuesday.  So some doctors say surgery is inoperable and others say radiation is too dangerous.

My interest is in getting additional opinions about these and other options--especially any experiences with surgeons who may not be so quick to declare a tumor inoperable.

Thanks.

Bob

 

 

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