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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Anonymous's picture
Anonymous
Replies 6
Last reply 11/13/2013 - 8:26pm
Replies by: Anonymous, ecc26

Any thoughts whether this would work?  My friend is not allowed in any other trial but MDA has offered the TIL for him.  I worry about the toxicity.

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sofistef's picture
Replies 6
Last reply 11/13/2013 - 5:05pm

Hello,

 

We had the appointemnt with Dr Atkins this afternoon. He thinks systemic treatment is the best apporach right now as he fears the surgery will not be a solution because there is a hilar lymph node that is borderline and it might me affected. I have an order for adbominal and pelvis CT and and MRI that I hope will show nothing. Bloodwork was normal. My head is spinning and it's hard to find an epithet to describe the state of fear I experience right now! Unforunatelly the are no more seats on the ippi/ nivolumab I was hoping I can enroll and this upsets me ! I feel like stupid melanoma was ahead of me this time as well, I'm sorry I was not agresive enough to convince my doctor to remove the lung tumor while it was 5 mm , I accepted to wait 2 more months! I did the same thing 3 years ago when the derm told me not to worry about the mole, as it was nothing!!! I hate the odds I'm presented, but I know I must do whatever it takes be among the lucky ones to respond to whatever treatment as my kids need their mom! I hate this even more as I never ever in my life used a tanning bed or was a sun worshiper, but yet this happened to me!

Macke

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/13/2013 - 4:08pm
Replies by: POW, Golda_, Anonymous
can anyone explain why just not prescribe TAFINLAR?
TAFINLAR prescribed after Zelboraf?
How do you know when Zelboraf stops working ?
 
Please do not send me for an answer to the treating doctor.

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nancyg's picture
Replies 3
Last reply 11/13/2013 - 9:51am
Replies by: Anonymous, JerryfromFauq, POW

Hi

I know my husband's melanoma does not have the Braf mutation.... So what does that mean for him and his prognosis?? I have read on here that people with Braf can have certain treatments that would not work on non braf melanoma....does the Braf mutation make the Melanoma more  aggressive or does  it really have no bearing on outcomes??  Does having the Braf mutation  cause the melanoma to spread faster??

All of this info is hard to digest.. I would appreciate any input

Thank you very much,

Nancy

 

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Golda_'s picture
Replies 7
Last reply 11/13/2013 - 3:05am
Replies by: Golda_, Anonymous, Janner

Всем привет!

Надеюсь ваш браузер переведет мою тему.

Я с Украины. Моя мама больна меланомой. 2 года тому ей удалили родинку. Гистология показала меланому. 2 года никакого лечения не проводилось. Мама отказалась проходить курс химиотерапии.

На сегодняшний день у мамы метастазы в печени, позвоночнике и паховом лимфоузле. Очень быстро растут.

Единственное лечение которое сейчас есть - правильное питание и probiotic.

Я с братом самостоятельно изучаю все что связанно с меланомой. Несколько дней назад мы получили результат BRAF теста. 3 недели ждали результат (750 usd) Положительный. Купили 2 упаковки Zelboraf (2*3750 usd). В Украине не распространено медицинское страхование, да и дорого это. А для пациентов старше 60 лет еще дороже. Маме 64 года. Можем расчитывать только на свои силы.

Я готова купить или принять в дар хоть одну таблетку Zelboraf.

А так же я прошу Вашей помощи в приобретении этого препарата. Возможно в Америке он стоит дешевле? Я понимаю, что большинство из вас понятия не имеет сколько стоит этот препарат. Буду благодарна за любую информацию. Как купить? Где купить? How to return VAT?

original prescription не выписывают. Но есть заключение онкологической клиники с описанием диагноза и РЕКОМЕНДАЦИЕй принимать Zelboraf.

Так же, на этом форуме я впервые узнала о препарате Tafinlar.  Буду благодарна за любую информацию. Как купить? Где купить? How to return VAT?

 

Я верю, что еще немного времени и найдут препарат который сможет лечить эту болезнь как обычный насморк. Нужно только время!

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sofistef's picture
Replies 4
Last reply 11/12/2013 - 6:30pm

Hi ,

 

My name is Dana, I read the post daily but never posted before!

I and a 38 years old mom of 2 ( 4 years old girl and 6 years old boy) . One mole appeared on my thigh during my second pregnancy in 2010, everybody felt this was pregnancy related sking changes. In March 2012 I had it removed and it was 1.5 mm melanoma nonulcerated, sentinel node positive (.45cm) micromet. Had the rest of nodes removed and non of them were positive for melanoma. . I toured Sloan Kettering, John Hopkins, Georgetown Hospital, hoping to find a trial, with no luck as the tumor burden in sentinel was not big enough. Had 3 month of interferon.

I just learned that it is back in my right lung, (1.2cm nodule) and we are devastated. I will meet with my oncologist today, and I hope I will be have more luck with clinical trials this time!  I will probably have more scans and bloodwork, biopsy and  I pray for good results! 2 months ago the CT did not show anything other the 5 mm lung nodule that now grew to 1.2 cm.Two weeks ago my bloodwork was normal.  My head is pounding, I cannot sleep and I try to find resources to stay strong and positive, as my kids and husband need me and I want to see them grow!

Macke

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Aimileah's picture
Replies 10
Last reply 11/12/2013 - 1:16pm

Hi I'm new to this site so not sure if this is the right place to voice my concerns but I hope you can help. I'm a 28yr old female and for the last year at least I have had a small flat brown mole on the sole of my foot. However recently I have noticed it has grown slightly and has a small white area in the middle of it. Should I be worried? I mentioned it to a nurse practioner a few weeks ago and she just said keep an eye on it? I should also mention my grandad had skin cancer at a young age and that I'm a very fair redhead! Any advice would be great thanks.

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nancyg's picture
Replies 5
Last reply 11/12/2013 - 12:49pm
Replies by: HopefulOne, nancyg, ecc26

My husband will be getting his last dose of Yervoy next week Monday...he has had basically zero side effects... At his last appointment his Dr said... "Next time you come in I want to see a rash or something so we know this is working...."  So we are nervous ... It is horrible not knowing what is going on in that body...the weird thing is that a few lumps have popped up... One on his shoulder and two on his stomach.  We do not know what to think !  He has his first CT scan  Dec 13.. After his 4Yervoy treatments to see what is going on... So I guess my question is did any of you have absolutely zero side effects-not even a rash -and the Yervoy worked???         

Thank you so much.... This is all so scary and frustrating..

Wishing you all the best,

Nancy

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hopeagain's picture
Replies 3
Last reply 11/12/2013 - 11:34am

Was stage IV with many mets everyone. Ipilimumab extrememly successful taken initially 6 years ago, and received boosts twice along the way but cannot receive again due to a side effect from the IPI. Now mets to liver and need some update on new treatments (not biochemo/IL-2/interferon) [such as anti-PD1, etc...] and if you had any experience with them.

THank you very much,

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/12/2013 - 10:06am
Replies by: ecc26, Anonymous

Hi,

I had my sentinal lymph nodes removed on my right groin. I have a pimple there now and it's been there for a week and not going away. It also feels kind of lumpy and I don't know if that is the surgery or the pimple.

Has this ever happened to anyone else? Can a melanoma come back in the form of a pimple?

Thank you

 

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jcmp's picture
Replies 1
Last reply 11/12/2013 - 9:10am
Replies by: Golda_

Hi Tim,

Do you know whether those who are BRAF 600E positive and have had Zelboraf in the past are eligible for the GSK BRAF and/or MEK inhibitor?  I read the GSK press release which states that the BRAF inhibitor (Tafinlar) is not indicated for use for those who have BRAF-wildtype melanoma.  For the MEK inhibitor (Mekinist), it says the same thing and also that it is "not indicated for the treatment of patients who have received a prior BRAF therapy."   If that's the case, it seems that everyone who has had Zelboraf cannot have the MEK inhibitor.

Could you please clarify this issue? 

Thanks so much.

 

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NYKaren's picture
Replies 7
Last reply 11/11/2013 - 8:00pm

Hi everyone,

So I was on intermittent dosing of Tafinlar and I stupidly didn't start taking it again at the right time. we have no idea if those extra two weeks made some small tumors develop, but they did. 

Ten days later it was back for gamma knife (second time.)  I was the last case of the day and had  17, yup 17 tumors.  The actual gamma knife was two hours. Apparently when they're very small as these were, the  procedure takes a long time.  Thankfully they used anesthesia.  In at 7:00 am, out at 8:00 pm. 

When I had MRI last week, they found my ear is still clear and lymph nodes in my neck were all clear too. I seem to be having a mixed response thing going on.  My blood work is really good too.  Going to onc on 11/19, and neurologist/ onc are tapering my Decadron yet again. Between the depression,the weight and the leg pain, I'm more than ready.   Luckily when my brain started freaking out, I increased the dosage, so I know it was necessary...

I'll report in after my next onc appointment. 

Karen

Don't Stop Believing

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As I approach completing three years in this trial I am developing wild type melanoma on my chest and face. I have had six knife fights since Ausust getting rid of it while it is still in situ. The speculation is that the BRAF at V600 E has been acting as a governor of a cassette of downstream genes that keep them in check, but once the drugs took over the BRAF, and inhibited it, it caused the downstream grouping to fire up wild type melanoma. This is not happening with my non-redhead cohorts. There is a hypothesis that since my red haired genes are not recessive, but active, it only affects red heads.

The rest are not developing this wild type melanoma. I would like to know if this is happening to other red heads in the trial. The question to be answered is whether or not the BRAF has returned to normal, and if so, by stopping the inhibitors, would it again start to govern the downstream gene grouping that is causing the wild type melanoma, and shut it down. Isn't it a grand thing to be part of this cutting edge of knowledge? I feel so fortunate to still be here and have my primary BRAF positive cancer to remain in check so long, but maybe it is time for an experiment within the experiment and see what happens if I stop the meds. I might run out of skin to stretch if this goes on too long!

The history of the world is the battle between superstition and intelligence.

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Hi all,

I am a melanoma stage 3 survivor. I started a cancer awareness company called WEAR AWARENESS to give back to those that are still fighting their cancer. Proceeds of every shirt sold goes to current cancer fighters for everyday expenses not covered by insurance. Things like co-pays, traveling expenses for long distance doctor appointments, etc. 

If you or someone you know is currently battling melanoma, go to www.wear-awareness.com and NOMINATE them. We need cancer fighters to give back to, and are excited to do so!

We have a melanoma designed t-shirt that is really cool. Our shirts are soft and durable. Check it out www.wear-awareness.com Below is a brief story of my melanoma, but you can find a longer version on my website. 

I was diagnosed a week after I graduated from college. I was 22. I had an immediate surgery to remove my melanoma which was on my back. The doctors biopsied a few lymph nodes in my right groin. I was devastated when they came back postive with cancer. I then had a surgery to remove all lymph nodes in my right groin. They had to cut a leg muscle and move it, then reattach it to reach all of my nodes. This caused my to not be able to walk for a month. I then did interferon for a month. I was the few 10 percent that lost over half of my hair from this treatment. I then decided not to continue with the 11 month treatment program.

THANKFULLY I have been cancer free for 20 months.

Thanks for reading! Prayers go out to everyone going through melanoma. I have been there...you will get through it and be stronger for that!

Casie 

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BrandyW's picture
Replies 9
Last reply 11/9/2013 - 9:22pm

My mom went to the doctor for lower back pain. When the did the MRI (looking for disc issues) they saw lesions on her liver and spine. She was told it was metastic melanoma. They did a full scan (ct) and we are waiting on the results until she gets back from vacation on the 18th. Also did a needle biopsy on her liver.   I'm almost certain she has rumors in her lungs as well because she coughs a lot.  I am going with her to her first oncology appt. What questions should I ask? 

I found this site while searching on info... Most of it looks pretty grim. Anyone here in a similar situation or know someone who is? Any help on treatment and what to expect is greatly appreciated :)

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