Home Forums Melanoma Diagnosis: Stage IV Two months on Zelboraf, side effects and what to do next

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  • #22081
    Frenci
    Participant

    Hi everyone, I’m Francesca, I’m writing from Italy. First I apologise for my English.

    My husband has been diagnosed with melanoma at stage IV in April.

    In these very difficult months I spent a lot of time reading this forum and searching as many information as I can. This diagnosis has shocked our lives and everything has changed!

    The scan showed many liver mets, the larger one of 2,5 cm; many small lung mets; lymph nodes, bone metastasis and unfortunately brain mets, the larger one of 3 cm with an important perilesional edema. He is doing Zometa for the bone mets.

    He immediately started detamethasone and, thanks to God, he have the Braf mutation and he started Zelboraf on 9th May.

    Our oncologist said it was not worth doing brain surgery or radioteraphy since the brain lesions have reduced.

    The scan of 23th June showed that all mets have shrunk by half and many are barely clear. Also the brain mets were still there but had shrunk considerably like also the perilesional edema has reduced.

    The oncolologist said us to ask an opinion for a radiation brain treatment. But she said nothing about how to manage the side effects. In facts my husband feel very tired and he has no energy. He often has headache, nausea and sometimes he can’t breath and has high blood pressure. I’m worried that the situation could get out of control! He is still taking detamethasone (8mg daily), but I think that, as the brain edema has reduced (like the scan showed), he may also reduce the dose of detamethasone. What do you think about it?

    I’m also thinking about what to do if Zelboraf stops working. I think the next step will be the ipilimumab. I have red about anti – PD1 and I have understood that it’s not approved yet. Is it possible to get into a trial with it? We could also pay for it !

    Thank you so much for your help

    #64928
    Gilly
    Participant

    Hi

    so sorry for your husbands diagnosis – my husband is on month 17 on Vem/Zelboraf – the expanded access of the Merck Anti PD1 is in Europe – you need to fail Ipi and then you should be able to get it at one of the Spanish research centres – make sure you are at a centre of excellence – you should be given advice on the side effects of all the drugs he is taking and how to manage the side effects – make sure you get answers you understand – it is important to have a team who knows the latest drug treatment strategies as there is a lot happening in Europe at the moment, and the sequence of treatment is important for you. All the best

    #64929
    tamie
    Participant

    Hi,

    Sorry for your husband diagnosis.

    My husband started Zelboraf exactly one year ago. I don’t feel I am expert enough to recommend on therapy what I can say about the swickness and the medication that I can fully understand you. The diagnosis turned up side down everything in our life, nothing stayed the same and for several months it was very difficult to function – both physically and emotinally. My husband had every possible side effect and he is on reduced dose. Now after a year, at last his body started getting used to the medication and it is much easier so slowly we find our self doing things we haven’t done for a long time. Human are strong and as we get used – we develop new ways of coping and what you thought is unbarable – becomers part of your life. We are now planing our first vacation abroad and hopefully it will be ok. You need to remember that we depend on our oncologist but we also need to find what works for us. Proper diet, rest, comfortable cloths, – all can make it better.

    we live and we enjoy inspite of everything

    Wish the two of you luck

    Tammie

    #64930
    Frenci
    Participant

    Hi ! Thank you so much for your replyes Gilly and Tammie! It’s so precious for me !

    I believe that everything will change back as it was! I repeat this every day…

    Now I want to be sure that I’m making all the best for my husband and try to give him the solution for every problem that comes up. Perhaps he needs to reduce the dose of Zelboraf for a while. I don’t know what to do. I think also, Tammie, that, emotionally, it is difficult to deal with this diagnosis. My husband is worried that this situation will not change better. I’ll read him your post!

    Unfortunately our oncologist doesn’t follow us enough and I’m searching for another one.

    Gilly, thank you so much for the informations. So the Eap anti – PD1 is available in Europe only in Spain and only if you first fail Ipi? And if we come in the USA? I red in this forum that it’ll be approved within this year, isn’t it?

    #64931
    Catherine Poole
    Keymaster

    Yes, the Merck Pd1 will be approved in October in the U.S, but most likely will require you fail IPI first. You can come to the U.S. for this but it is available in certain European locations which I have not been able to access. I would call the major centers, (try our global resources: http://melanomainternational.org/web-resources/global-resources for locations.

    But again your husband will need to progress on IPI to get into the EAP. Let us know how things are going for you both.

    #64932
    Frenci
    Participant

    Thank you very much Catherine for your help!

    I got in touch also with an excellent center in Siena (Toscana – oncological immunoteraphy) with the head of department, Michele Maio. I’ve seen it in your global resources.

    First of all, I think we have to solve the problem with the brain mets, which is the most important now, before we get into ipi.

    Thank you again for your support

    Francesca

    #64933
    Catherine Poole
    Keymaster

    Ask the doctor about taking IPI and getting the radiation (SRS: stereotactic is preferred) at the same time. There is said to be some working together of the two agents. Good luck!

    #64934
    tamie
    Participant

    Hi ,

    Well, I am afriad things will not go back to where it was before. The diagnosis changes life, you always have the fear and you always look for solution. However, as time past you learn to look at it step by step, you stop thinking of the far future and fears and you focus on what to do this week. Slowly you will find that there is a lot you can do, and there are many things you can enjoy, and life can be good – but different, so you learn to accept it. Michael could not walk or stand for a long time, so I found a good chair for him to sit on, and I invited all our friends over, and I host a lot, so he will not feel isolated. Our onclosits only sees us one in 3 months but when I need answers – I mail him and he answers. When we felt Michael was too weak we asked his permission to take iron and this helped a lot. Michael did not sllep for a long time, so we tried – alergy pills, sleeping pills, win, meditation, etc – whatever could help and we found our recepy. So – you read, you learn and you try, and you find that there is lots of hope. You need to remember that like an architect – it is now your time to design the way your life will look like and make the most out of it. Good luck . Tammie

    #64935
    Frenci
    Participant

    Catherine Poole wrote:

    Ask the doctor about taking IPI and getting the radiation (SRS: stereotactic is preferred) at the same time. There is said to be some working together of the two agents. Good luck!

    Thank you Catherine..

    Our oncologist suggested us to take a break from Zelboraf just for the time we get the radiosurgery (for “stereotactic” you mean “gamma knife”?)

    She didn’t mention to start ipi. But I’ll certainly ask her about it.

    #64936
    Frenci
    Participant

    tamie wrote:

    Hi ,

    Well, I am afriad things will not go back to where it was before. The diagnosis changes life, you always have the fear and you always look for solution. However, as time past you learn to look at it step by step, you stop thinking of the far future and fears and you focus on what to do this week. Slowly you will find that there is a lot you can do, and there are many things you can enjoy, and life can be good – but different, so you learn to accept it. Michael could not walk or stand for a long time, so I found a good chair for him to sit on, and I invited all our friends over, and I host a lot, so he will not feel isolated. Our onclosits only sees us one in 3 months but when I need answers – I mail him and he answers. When we felt Michael was too weak we asked his permission to take iron and this helped a lot. Michael did not sllep for a long time, so we tried – alergy pills, sleeping pills, win, meditation, etc – whatever could help and we found our recepy. So – you read, you learn and you try, and you find that there is lots of hope. You need to remember that like an architect – it is now your time to design the way your life will look like and make the most out of it. Good luck . Tammie

    Tammie, sorry for Michael. Now I have a lot of fear because I realize that this is a crucial situation for my husband. I think life could be good also with this diagnosis, I think also it must get better but it’s necessary to reach a new balance, in a different perspective. However there are example of people who have reacted very well to the teraphies and their life has changed back as it was. In this moment I trust in that.

    Why doesn’t your husband get into ipilimumab? Or in the Braf/Mek combo which is said to have less side effects?

    #64937
    jualonso
    Participant

     Hi Frenci, im from Spain

    http://www.groupgem.org/ensayos/2014/ensayos-clinicos-activos-en-espana/

    Go to the web above and there antipd1 you can take it after ipi Or after braf inh.

    It means you dont need to wait to fail ipi, just after zelbobraf is enought

    I hope your husband get better, i know what he is going trough, im sure is possible to live very long and very well after diagnosis. Just be your advocate and keep figfhting

    #64938
    tamie
    Participant

    Hi,

    It took a long time, but side effects are better now. Mek is not yet recognized in Israel and I do not want him to start Tafinlar without the Mek – our oncologist is not ready to start combo before he really sees that Michael develops strong side effects. The main thing is that the Metastasis are under control and after a long time we slowly return to normal life, so as long as the Zelboraf helps and I know of people who take it for few years – I do not wish to change. So – right now we are staying with the Zelboraf – hop it will continue being effective. Meanwhile the Mek might be approved soon and then we will check again. The last year has certainly been different and with tension – but also with many good things. So – I am trying to do my best as I am sure yo uare, and hope it will be the best for you as well

    Tammie

    #64939
    Frenci
    Participant

    jualonso wrote:

     Hi Frenci, im from Spain

    http://www.groupgem.org/ensayos/2014/ensayos-clinicos-activos-en-espana/

    Go to the web above and there antipd1 you can take it after ipi Or after braf inh.

    It means you dont need to wait to fail ipi, just after zelbobraf is enought

    I hope your husband get better, i know what he is going trough, im sure is possible to live very long and very well after diagnosis. Just be your advocate and keep figfhting

    Thank you very much jaulonso.

    Yesterday my husband was really bad for the brain edema and today we have started infusions of detamethasone and mannitol. The oncologist said that, until the brain mets aren’t stabilized, he can’t do neither ipi, neither anti pd1. Maybe he could switch to the braf/Mek combo…I don’t Know. I hope that Zelboraf is still working (it’s only two months he is on it!) and that these symptoms aren’t correlated to a mets growth.

    Tomorrow we’ll have a special consultation for a radioteraphy.

    Keep fighting!

    #64940
    rick1981
    Participant

    Stay strong Frenci and good luck today!

    #64941
    Frenci
    Participant

    Hi, sorry again for my English…

    Thank you rick for your encouragement!

    I would like to update you about my husband’s situation.

    We passed through a very terrible period this week.

    His situation made worse day by day and we admitted him to hospital for the cerebral edema. The RMN shows a diffused edema and a perilesional bleeding. The oncologist suspected a neoplastic meningitis.

    He has five small brain mets (about 0,5 to 1 cm) and a larger one (about 3 cm). The last scan (23 th june) shows that all the brain mets shrunk and also the perilesional edema

    Today, after a week of infusions of dexamethasone and mannitol, at last he is getting better and starts to eat again.

    He is taking zelboraf, but sometimes, in these terrible days, he didn’t take it or he took it only one time a day. I hope it is still working.

    Otherwise we don’t understand why he is so bad.

    He has very severe headaches and he hardly can stand up.

    The oncologist says to take a break from zelboraf until the situation doesn’t get better, and that, since he is taking dexamethasone and thinghs aren’t stable, he can’t start ipilimumab.

    Furthermore, since things don’t get better, he can’t do radioteraphy.

    I don’t know what to do…

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