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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bikerwife's picture
Replies 2
Last reply 2/17/2013 - 9:54pm
Replies by: Anonymous, jag

Does anyone know anything about either of these?

Temador and z?

abarxene breast cancer drug that seems to help with mel in body and brain?

What God leads u to he will. Lead you through

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cld's picture
Replies 8
Last reply 2/17/2013 - 12:00pm

3 months clear...not a long time i know,  but we all start somewhere, right?

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Owl's picture
Replies 1
Last reply 2/17/2013 - 7:10am
Replies by: aldakota22

This week my husband had his 8 week scan and it shows good results. 2 of 4 mets have even shrunk by 50%, the other 2 are also smaller, nothing new, brain is clear. After the devestating news that IPI killed any mets except these 4 we are thankful that Zelboraf works, though more cautious, just hope that we will have a long-term response. The side effects were really bad in the beginning, that's why he had a Z holiday and after that reduced the dosage to 3-0-3. Now the side effects are manageable, a little itchy skin, little rash, little joint paint and he is taking something to bring the uric acid to a normal level. Doctors stick to the dosage, so we are prepared for the next 8 weeks, plan a little holiday (late honeymoon) and enjoy life.

My thaughts are with all of you, especially with the caregivers who sometimes seem to suffer even more!

Jenny

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qtkitycat's picture
Replies 14
Last reply 2/17/2013 - 3:41am

Hi,

I want to thank everyone for creating a kind enviroment here.  I've posted before, but can't find my previous threads.

My fiance has been diagnosed with Stage IV Melanoma, mets in liver, kidney, spleen, adrenal glands and lungs ( they removed the tumorous testicle).        He has finally been approved onto Medi-cal with 100% coverage, so we would like to get a 2nd, 3rd, etc opinion and are wondering who we should go see.  We live in Bishop, Ca and will have to drive at least 3  hours to get to the closest dr, but we are willing to go further.

We just need a doctor that has a better outlook, rather than the one we are currently seeing...he says David will eventually become resistant to all treatments.  And I say BS to that!!  They've given him 10 months with now treatment and 14 months with treatment.  :(

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François's picture
Replies 4
Last reply 2/15/2013 - 10:11pm

I have been now 7 weeks o Zelboraf, and last tuesday I had a cat scan. My oncologist sent me an email last night telling me that he checked the pictures of scan and noticed that the 2 nodules in my lungs are SMALLER! (defitive report will take few days more to come out). Furthermore It's been  more than 4 months since my last surgery and surgery zone shows no envidence of any tumors in my groin. (I had 2 relaps within less than 6 months undernith the scar). I am on 8 pills a day can deal pretty good with side effects. I thank God every day for having this desease today and not few years ago. We all start seeing the light at the end of the tunnel!!!! 

François

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/15/2013 - 9:59pm

Curious on folks experience with Zelboraf.  Did you get warts while on it?  Did you get them in odd places where the sun doesn't shine?  And is it possible to get them even after you stop taking Z?  I see my derm soon so I'll ask him about them also.  Oh the things we go thru!  

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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AllyNTAus's picture
Replies 6
Last reply 2/15/2013 - 7:41am

Hi everyone,

I've been going pretty well on the GSK BRAF inhibitor since I started on it 1 May 2012, all existing enlarged lymph nodes shrunk dramatically and stayed that way, lungs cleared up, no new things cropping up until now. My CT in Nov 12 showed a 7mm focal lesion in the fundus of the gallbladder. By my next CT on 9 Jan 13, it had increased to 15mm. I had an ultrasound today, and while I don't have the report, it is quite obvious to me from looking at the film that the lesion is now quite large, and looks a bit like a tree with several branches coming off it.

I have no symptoms at all, feel otherwise very well, and my melanoma oncologist has remained happy with my response to the BRAF inhibitor.

I have an appointment to see my local oncologist in the morning, but I am expecting bad news. I have read some articles that indicate metastisis to the gallbladder is fairly common, and if contained there, can respond reasonably well to surgical resection. I am happy to get rid of my gallbladder if necessary!

So I was just wondering whether anyone else had experience with a met to the gallbladder.

Hoping all of you are keeping well,

Allison

A bad day's fishing beats a good day's work everytime

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JoshF's picture
Replies 8
Last reply 2/15/2013 - 7:06am

Hello Fellow Warriors!

I had a quick question on staging but first let me give you a little background for those not familiar.

Aprill 2011- Small bump in cheek removed by derm. Thought to be sebecaous cyst as skin looked fine. Comes back melanoma and suggested metatstatic melanoma. Find melanoma specialist....PET/CT....negative

May 2011- Wide excision and SLNB. Margins clear and SLNB negative. Oncologist is convinced of unknown primary...thinks it could be primary dermal melanoma....a rare subtype. No further treatment advised.

Nov 2011- Feeling uncomfortable...find another melanoma specialist. Wants more aggressive scans....3 months vs 6 months. Finds my case unique but figures I fit more into stage III or IV.

Very confused as you want to believe it was primary but what to fo. Lots of advice....very differing opinions oddly enough from friends who are doctors (university medical vs. private). Whatever I just want to whip this so I continue seeing both but opt for aggressive follow up doing scans every 3 months.

This leads me to my staging question....I have order for scan and see that for diagnosis it says Stage X, pt3a. I have no clue what this means and where I fit in to "staging guidelines". I really hate being an oddball but I have been blessed considering what others are going through or have been through. I visit often as I appreciate the wisdom and logic that is shared on this site. I know scanziety is building (scan is Feb 22nd) and I always keep waiting for shoe to drop. Try to stay positive but nerves do get best of me.

Wisihing you all the best and hoping to hear great things about new treatments on the horizon. My doctors say there are some great advances happening and new treatments aren't far off!!!

 

Josh 

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chiaraj77's picture
Replies 1
Last reply 2/15/2013 - 3:31am
Replies by: DeniseK

I have had several basal cells removed and my doctor (have actually only seen the NP) is very laid back and all about wait and see. My insurance just switched and I would love to find a better practice to go to.  I am looking for a doctor in Pleasanton, Danville, Walnut Creek, etc.  Thank you so much. 

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dian in spokane's picture
Replies 7
Last reply 2/15/2013 - 1:46am
Replies by: Napa K, Anonymous, dian in spokane

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

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Kim K's picture
Replies 4
Last reply 2/14/2013 - 9:20pm
Replies by: Bobman, cld, Janner

I am logged in, was working yesterday, and today all I get is a blank pop up with user as couple and I can't click on any buttons to fix it.....  I logged out then relogged in, made sure my pop up blocker was disabled.  HOW VERY FRUSTRATING!!!

Waving at Carole K & Libby......  Wish I could join you.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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gtown's picture
Replies 5
Last reply 2/14/2013 - 8:22pm

Just had a chest x -ray which came out clear but while waiting for the results my brain started going into overdrive. Is there a place where I can find the survival rates of people that have nodular melanoma only? If my lesion started as a open ulcer and then closed up could this be construed as an ulcerated lesion? The biopsy results said that it wasn't ulcerated. How do they determine an ulcerated lesion? My doctors secretary said it was done microscopically. ( I been trying to connect with my doctor but we're playing phone tag )  Can anyone point me to a website for a diet for this disease?

My SNB came back clear in May of 2011 has anyone had the disease progress to other parts of the body with a clear SNB? Just give me the truth and I'll deal with it.

Thanks in advance

Gtown

Nodular Melanoma 1.9 mm on shoulder diagnosed 4/ 2011  Taken out at U of P hospital 5/2011

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dolphin5's picture
Replies 1
Last reply 2/14/2013 - 6:56pm
Replies by: kylez

As I said on my prior post the decision was made to go with interferion, interlukin and three others with Dr Gailani at Kaiser riverside.  Two additional test were ordered prior to being admitted next week for her first stay/treatment.   Pulminary and stress test for the heart.  I know we asked why these two test but neither my wife or I can remember and I did take notes.  And finally as a care giver what can I expect or should I be prepared for when we return home?  I know someone has an answer.  Once again we want to thank for all of you help. 

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dian in spokane's picture
Replies 5
Last reply 2/14/2013 - 5:23pm
Replies by: mbaelaporte, dian in spokane, Anonymous

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

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HI Ef veryone,

I read below about all the difficulties getting into chat.  I am sorry I can't help. I am computer challenged.  Let me see if I can get in touch with the gentleman who did the website. 

I can't tell you how much I have learned in the past two nights from all of you who conisder yourselves newbies.  So much has changed witih Melanoma and boy do I need to educate myself on all the new treatments. 

Last nighti it was a pleassure to meet Kyle, John F, Margo, Becky Doro, alcijado  and so many more.  Please come and join us.  JUst so you know you can just go t into chat at any time.  Post you will be there. 

Chat and the board were my saving grace going through LUng and Brain Met.  I met incredible peopel filled with love and understanding , not to mention Knowledge.  Thre were times I would leave chat crying, not because I was blue or hurt . I was crying for all of the blessings this BEAST brought me. 

Each and everyone of us have different stories and oh how we can learn from each other,

PLEASE WHEN YOU COME INTO CHAT , everyone will probably say hello . IF I am there I will ask everyone to stop for a few minutes to give you a chance to ask questions.  Often times the subject is NOT Melanoma, and at times it is almost social media where people go to laugh.  Please do not be offended. Many of us have met and have known each othere  for many many years,  It is a wonderful ommunity of support

Yes, there will be some old timers there as well.  At one time I organized get togethers in Asheville Orlando, Michigan and others organized them in Dallas and a few other places.  My goal is to try to do this again.  Charlie S wants a get together out where I live on Long Island.  That would be nice but hotels are too expensive.  We shall see. I am suggesting California and Janner also suggested Las Vegas, which would be the least expensive place for everyone to get to. 

Please come join us and know WE ARE ALL IN THIS TOGETHER.  Hang Tough and as Young Trooper  Drew would always say.. IF GOD BRINGS YOU TO IT, HE WILL SEE YOU TO IT. 

Hope to see you tonight

LOVE AND LIGHT

Carole K

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