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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noisy77's picture
Replies 2
Last reply 11/15/2013 - 9:17pm
Replies by: noisy77, awillett1991

Hello -

My mom is on the ipi / anti-pd1 trial (given sequentially).

After 3 months of anti-pd1 my moms tumor (in her thigh) grew 29percent .  She is now on IPI.  Has anyone been on Pd-1 and had an increase in tumor size followed by a decrease?

Thank you!

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Anonymous's picture
Replies 3
Last reply 11/15/2013 - 8:22pm
Replies by: POW, Anonymous
Mutation Landscape in Melanoma Patients: Clinical Implications of Heterogeneity of BRAF Mutations
Br. J. Cancer 2013 Nov 05;[EPub Ahead of Print], L Heinzerling, M Baiter, S Kühnapfel, G Schuler, P Keikavoussi, A Agaimy, F Kiesewetter, A Hartmann, R Schneider-Stock
Research · November 14, 2013
 
 

TAKE-HOME MESSAGE

  • BRAF analysis from the primary tumor and multiple metastases showed a high degree of heterogeneity among patients with melanoma, with almost 20% having discordant BRAF-mutation results among different metastases.
  • This heterogeneity may have far-reaching clinical implications for treatment planning using molecularly targeted therapy. A single biopsy may be insufficient to determine BRAF-mutation status.

- Richard Bambury, MD

ABSTRACT

Background: The detection of V600E BRAF mutations has fundamental clinical consequences as the treatment option with BRAF inhibitors such as vemurafenib or dabrafenib yields response rates of ∼48%. Heterogeneity with respect to BRAF mutation in different metastases has been described in single cases. As this has important implications for the determination of BRAF status and treatment of patients, it is essential to acquire more data.

Methods: A total of 300 tumour samples from 187 melanoma patients were analysed for BRAF mutations by pyrosequencing. Equivocal results were confirmed by capillary sequencing. Clinical data with respect to melanoma type, tumour site and survival were summarised for 53 patients with multiple analysed tumour samples (2-13 per patient).

Results: BRAF mutations were found in 84 patients (44.9%) and 144 tumour samples (48%) with BRAF mutations in 45.5% of primary tumours and 51.3% of metastases, respectively. In 10 out of 53 patients (18.9%) where multiple samples were analysed results were discordant with respect to mutation findings with wild-type and mutated tumours in the same patient. Mutations did not appear more frequently over the course of disease nor was its occurrence associated with a specific localisation of metastases.

Conclusion: As heterogeneity with respect to BRAF mutation status is detected in melanoma patients, subsequent testing of initially wild-type patients can yield different results and thus make BRAF inhibitor therapy accessible. The role of heterogeneity in testing and for clinical response to therapy with a BRAF inhibitor needs to be further investigated.

British Journal of Cancer
Mutation Landscape in Melanoma Patients: Clinical Implications of Heterogeneity of BRAF Mutations
Br. J. Cancer 2013 Nov 05;[EPub Ahead of Print], L Heinzerling, M Baiter, S Kühnapfel, G Schuler, P Keikavoussi, A Agaimy, F Kiesewetter, A Hartmann, R Schneider-Stock

This abstract is available on the publisher's site.

Access this abstract now

 

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hdelancey23's picture
Replies 13
Last reply 11/15/2013 - 7:18pm

My Mom has been fighting Melanoma for two years now.  She has been so strong and brave through out this struggle.  We just got the news that there is nothing left to do and suggested she go into Hospice this last Sunday.  I am very sad about this news and am not ready to let my Mom go.  She is so young, she will be 48 on November 28th.  It hurts so bad knowing that our time is so limited.  I pray every day that God gives her peace in her heart and takes her pain and hurt.  I feel like I should have done more to be there for her and spent more time with her.  Our family will never be ready to lose my Mom, and I don't see how we are going to make it through this.  I just don't really know what to do.  My heart hurts right now but what keeps me going is that I know that God will take her home and that she will be looking down on us when she does go.  Please if any body has any advice on what to do, how to cope, encouraging words and most importantly what I can do to help my mom right now please comment. 

 

Thank You.

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DeniseK's picture
Replies 31
Last reply 11/15/2013 - 7:04pm

I am at a loss of what to say and so upset I can hardly stop crying.  I spoke with my doctor and the temodar is not working,  He said my disease is progressing too fast and I could die at any moment from bleeding in my brain and pressure.  My head really hurts and he wants me in hospice for pain management until the inevetible happens.  I am not ready to give up.  I know I am losing this battle but I am not ready to go.

I got a response back from Merck.  The doctor there said they are planning a study of the Anti PD-1 trial to start soon for people with brain mets, and they are planning a compassionate use program that would be fair for everyone in need to have access.  He did not give me a time frame but I don't think I will have time.  

I am so sorry that I am not staying positive in this time but I am trying so hard.

As always All my best to you all and thank you so much for all your support throughout my journey.

I am scared.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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mclaus23's picture
Replies 1
Last reply 11/15/2013 - 8:11am
Replies by: POW

Hello well down to last treatment before chemo (which my dad won't do)is Mekinist. We cannot combine with the equivalent of zelboraf because his kidneys failed from that and he almost died from pd-1.

yeh, doesn't sound good. Had anyone been on just Mekinist and if so what were Side effects?

thanks much!!!!

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Sunday - Nov. 17th - Jonathan Landsman and Nicholas Gonzalez, M.D. talk about natural ways to stop skin cancer.  Join us anytime from 9am to 9pm EST.

Discover the real cause of skin cancer + much more.  Details below:
http://www.naturalhealth365.com/talkhourshow.html

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Janet Lee's picture
Replies 3
Last reply 11/14/2013 - 12:01pm
Replies by: Michelem, BrianP, aldakota22

I think the last time I posted was a few weeks ago when my husband, Don, was having tremendous pain in his groin area. This is at the same time that our oncologist at Mass General was telling us that Don is having a positive response to Ipi. Primary care physician didn't think it was a hernia, and oncologist didn't think it was the cancer...

I drove Don to the ER the Tuesday after Columbus Day. They got his pain under control and admitted him. After a week of hospitalization, tests, and scans, they decided it was the melanoma and he had surgery to remove a 8 cm tumor in his inguinal canal. Everything around the tumor, including bone, came back negative. And he is now pain free!

Don finished his Ipi treatment at the end of July, and his second set of scans/MRI show all other tumors to be stable or shrinking, and no evidence of anything new, including in his brain (he's had SRS treatments three times and one brain met surgically removed). During our meeting this week with oncologist, he reported that everything else is still stable, and this one problem tumor was most probably a response to the Ipi, but the inflammation and placement caused the pain.

In any case, the tumor is now gone, Don is recuperating from the surgery, and we plan to spend a few weeks before Christmas in Florida. (We've planned and re-planned this trip several times since last May!) Then we will await the arrival of our first grandchild (a girl!) and be ready for the next set of scans around the new year.

Regards to all you warriors. Keep fighting!

Janet Lee

 

 

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Jamietk's picture
Replies 3
Last reply 11/14/2013 - 8:13am

Just stopping in to drop you all an update and hopefully encourage some people (especially newcomers who may be looking for some positive stories). Had my 8 year checkup at MDA this month. I'm still NED a little more than 8 years from diagnosis of a Clarks IV, Breslow 2.1, mitosis 1 or 2, Stage IIA on my right forearm. Best wishes to all. Always sending prayers for the melanoma community. I'm the 3rd generation in my family (grandma and uncle died from it) so it will always be something I'm passionate about. Take care everyone. I'll be back next year.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/13/2013 - 10:14pm

My husband was recently diagnosed with melanoma on his face, close to his eye. We went to Moffitt where we were told what the next steps would be....procedure to remove tissue to check margins. After the margins were clear he would have surgery to remove the tumor and possibly need a skin graft. Well, 6 days later, on our ride to Tampa (only 45 minutes) we get a call that the margins were not clear and more samples would need to be taken and surgery postponed. My husband is not a whimp but both of these procedures were terrible for him, just a local, meaning injections in his face, close to his eye. Why can't they give him something.....he will be out for surgery. Now the doctor is saying the area is larger, not necessarily deeper but  very likely grafting will be necessary. He will take it from around his upper chest. We are both fairly intelligent people, but I just feel like we haven't asked all the right questions. We really have no idea what to expect regarding recuperation, etc. Any advice ? 

Thank you!

imd

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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!

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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!

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