Home Forums Melanoma Diagnosis: Stage IV Zelboraf, 1 month results

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  • #21963
    Mikhail
    Participant

    Hi from Russia,

    First of all, thank Catherine M. Poole for very useful and important matter which help us to get more newest information about melanoma.

    My mother at the end of year 2013 had a surgical resection of the melanoma (stage IIIb). Unfortunately in february we did a CT scan and found multiple intracutaneous metastases in the right breast (5-13 mm), axillary lymph nodes (left – 21 mm x 23 mm and right – 14 x 21), metastases in the lungs (2-7 mm), liver (2-11 mm) and spleen (1 met – 23 mm) . She is a braff positive patient that`s why we started Zelboraf (960 mg twice a day) 1 month and 2 weeks ago. Side effects -fever (temperature after 1 week – 38,5, after 1 month – 37,2-37,5). After the first month CT scan showed the following picture:

    metastases in the right breast, right axillary lymph nodes and lungs are disappeared;

    metastases in liver decreased to 5 mm, left axillary lymph decreased to 10 mm, 1 met in spleen decreased to 10 mm,

    but CT found multiple metastases in spleen (2- 7 mm).

    Our doctor consders the results after the first month of Zelboraf as possite dinamics and recomended to continue Zelboraf.

    Did anybody have similar picture after one month of Zelboraf?

    We know that Zelboraf can be short term or long term depending on individual. So what can be the second line treatment strategy (Ipi or Anti-pd1 drugs) if the zelboraf stops working ?

    #64340
    Catherine Poole
    Keymaster

    Thank you for your kind words. I would be looking for plan B, or another therapy if there is still disease progression going on. Sometimes there are mixed results. But consider her staying on Zelboraf until you can get her on PD1 or Yervoy.

    #64341
    Mikhail
    Participant

    Catherine Poole wrote:

    Thank you for your kind words. I would be looking for plan B, or another therapy if there is still disease progression going on. Sometimes there are mixed results. But consider her staying on Zelboraf until you can get her on PD1 or Yervoy.


    Thanks a lot for your recommendations. Try to do our best to find plan B but unfortunately anti PD1 is not available in Russia now, the only possibility to participate in expanded access program of Ipi. Ipi has lower response rate (approximately 25%) comparing with Anti Pd1. As far as I understand PD (MK 3475) is available in the US now in accordance with expanded program who previously failed Ipi. Is it really for foreign patients to be enrolled in this program in the US?

    #64342
    Gilly
    Participant

    Hi Mikhail – my husband had fast but not total reductions in tumour burden on zelboraf – there are people in uk and France on the Merck anti pd1 – but you have to fail Ipi first – my husband is being treated at the IGR in Paris – he has been having zelboraf for 16 months but has just had some new mets – he will have the anti pd1 if he has failed Ipi/Yervoy (he may have already failed Ipi since he was on a trial in 2012 but we don’t know if he was Yervoy/Ipi or placebo) – there are places in uk where people are having it .all the best.

    #64343
    Mikhail
    Participant

    Gilly wrote:

    Hi Mikhail – musband had fast but not total reductions in tumour burden on zelboraf – there are people in uk and France on the Merck anti pd1 – but you have to fail Ipi first – my husband is being treated at the IGR in Paris – he has been having zelboraf for 16 months but has just had some new mets – he will have the anti pd1 if he has failed Ipi/Yervoy (he may have already failed Ipi since he was on a trial in 2012 but we don’t know if he was Yervoy/Ipi or placebo) – there are places in uk where people are having it .all the best.


    Hi Gilly,

    Thank you very much for your husband experience with Zelboraf and important information about PD1 in Paris. We were little disappointed to have mixed response at the beginning of taking Zelboraf. In spite of we would prefer to stay on Zelboraf as far as it is effective now we are looking for Yervoy or anti pd1 trials. I contacted IGR two weeks ago and they informed me that there are no available trials concerning with melanoma. They offered to get Yervoy in IGR but it’ll be very expensive and if we fail Yervoy we will be able to switch on Anti pd1 . PD1 will be given according to ATU conditions. I have no idea that it is. May be you have faced with ATU in IGR? Are you from France or another country? Is it nessesary to get Yervoy in IGR in order to get the PD1 then? Wish you and your husband all best and to overcome all the obstacles.

    #64344
    jmmm
    Participant

    My husband had mixed results initially with Zelboraf…some tumors shrunk, some grew, some disappeared completely and some new ones appeared. He stayed on it (because there really wasn’t another option at that point). After 4 months, things started all shrinking and by 6 months, he was NED. He remains on Zelboraf and remains NED 2+ years later. I know his results aren’t typical, but there is hope it can take a bit to work and for some patients it lasts longer than the 4-7 months.

    #64345
    Mikhail
    Participant

    jmmm wrote:

    My husband had mixed results initially with Zelboraf…some tumors shrunk, some grew, some disappeared completely and some new ones appeared. He stayed on it (because there really wasn’t another option at that point). After 4 months, things started all shrinking and by 6 months, he was NED. He remains on Zelboraf and remains NED 2+ years later. I know his results aren’t typical, but there is hope it can take a bit to work and for some patients it lasts longer than the 4-7 months.


    Thank you for encouraging experience of initial mixed respose of Zelboraf. It`s really good result for Zelboraf. We would be happy to have the same results in further. Is he on Zelboraf still?

    #64346
    Gilly
    Participant

    Hi again Mikhail,

    My husband has always been treated at IGR (since 2008) – we are French tax payers but UK citizens so it is going to be difficult if you are non EU – I guess costly too – My understanding is that they are expecting the Anti Pd1 ‘s to be available off trial in Europe in 2015, but for now its only on trial and this means you have to fail Ipi as part of the protocol. I cant advise what you should choose, but I would say Zelboraf has not got completely rid of my husbands initial tumours, but it did significantly reduce them and prevent new mets – 16 months is considered exceptional – jmmm’s husbands results are truly wonderful – i would think having Ipi is a good second option – it can work long term and it is only 4 doses and it may become a treatment criteria for future Russian trials of Anti Pd1 and you will have done it – its difficult to know when to stop Zelboraf (we were tempted to stop early as research at IGR has shown the antiPd1 to be SLIGHTLY more successful if taken before progression on Zelboraf) – but its only a slight difference and perhaps not statistically significant. In hind sight I am glad we continued on Zelboraf. At the moment through out Europe I thing the standard is taking Ipi/Yervoy after Zel has failed – some take Ipi first too. All the best.

    #64347
    Mikhail
    Participant

    Gilly wrote:

    Hi again Mikhail,

    My husband has always been treated at IGR (since 2008) – we are French tax payers but UK citizens so it is going to be difficult if you are non EU – I guess costly too – My understanding is that they are expecting the Anti Pd1 ‘s to be available off trial in Europe in 2015, but for now its only on trial and this means you have to fail Ipi as part of the protocol. I cant advise what you should choose, but I would say Zelboraf has not got completely rid of my husbands initial tumours, but it did significantly reduce them and prevent new mets – 16 months is considered exceptional – jmmm’s husbands results are truly wonderful – i would think having Ipi is a good second option – it can work long term and it is only 4 doses and it may become a treatment criteria for future Russian trials of Anti Pd1 and you will have done it – its difficult to know when to stop Zelboraf (we were tempted to stop early as research at IGR has shown the antiPd1 to be SLIGHTLY more successful if taken before progression on Zelboraf) – but its only a slight difference and perhaps not statistically significant. In hind sight I am glad we continued on Zelboraf. At the moment through out Europe I thing the standard is taking Ipi/Yervoy after Zel has failed – some take Ipi first too. All the best.


    Hello Gilly,

    I suppose there are many people who wait for anti pd1 approval especially in Russia. Though considerable quantity of patients are not aware of existing of Zelboraf and Anti PD1. Anti Pd1(Nivo) – Ipi combination demonstrates amazing results shrinking tumors by 80% and the remission remains for years. By the way do you know whether Zelboraf is effective against spine mets? How ere in Russia the government doesn’t provide patients with such drugs. The only possible treatment is chemo with Dacarbazin which is in general uneffective again mets. Considering Zelboraf after Ipi it have to be mentioned that there are different opinions at this respect. Some doctors are convinced zelboraf is more effective after Ipi but others have an opposite position. Today we visited our doctor and he told us that he is worry about possible action of Ipi after ZELBORAF. I expect he doesn’t have enough experience of combined using of this drugs. Also he belive that if we decide to go from Zelboraf to Ipi we must have one month interval between zelboraf and Ipi. What do you think about This?I don’ know a world practice with respect to changing drugs. The main thing for us is to determine the moment when zelboraf stops working.

    #64348
    Gilly
    Participant

    Hi Mikhail – its very difficult to say – as you mention there is a variation in expert opinion about this – I will say that if Zelboraf works it does work very fast – whereas Ipi has quite a delay – I know many people who have had Zelboraf to halt the spread and growth and to reduce the mets and then go on to Ipi later – yes there is a period to flush out the zelboraf but for me the speed at which Zelboraf can work was very useful – we were lucky that it continued to work for ages and gave us time to wait for the new up and coming treatments to come on line. Make sure you are discussing all this with a Melanoma specialist not just and ordinary doctor ! All the best .

    #64349
    Mikhail
    Participant

    I would like to share the very good news about my mother who is on Zelboraf at 3 months. After first month she has mixed result with appearing multiple tumors in spleen.

    On Thuesday she was scanned by CT and it showed the multiple tumors in liver and spleen have been disappered. Only one spot is detected in spleen about 7 mm which was 23 mm 3 months ago.

    Now she has small spot (1 mm) in her lung and one spot in spleen (7 mm) and also increased left limp nodes. Our doctor hasn`t seen this results yet but we suppose he will recomend to continue taking Zelboraf.

    We would want to suggest to our doctor improving Zelboraf action by adding Yervoy as combined therapy because of worry about possible stoping of Zelboraf action in 3-5 months. Are anybody here who have combined Zelboraf -IPI therapy and what results are? Is it required to reduce Zelboraf dose when getting the Yervoy? Possible side effects?

    #64350
    Catherine Poole
    Keymaster

    Yes, those two do not mix well and a trial had to stopped with the combo of IPI/Zelboraf because of liver toxicity. Sequentially, not a bad idea though.

    #64351
    Mikhail
    Participant

    Catherine Poole wrote:

    Yes, those two do not mix well and a trial had to stopped with the combo of IPI/Zelboraf because of liver toxicity. Sequentially, not a bad idea though.


    Catherine, thank you very much for your assistance. We need your professional advice once again. Today we asked our doctor to start Ipilimumab instead of Zelboraf. Ipilimumab is given in Russia accorting to EAP of BMS company. He told that If we decide to start Ipilimumab we will need to take a break between Zelboraf and Ipilimumab, approximatelly two months. During this period we will have two courses of chemo in order to keep a disease under control. I suppose that it`s very strange approach. We really can`t understand why we need to take this break and to do chemo. Is it possible to start Ipilimumab immediately after Zelboraf without any chemo?

    #64352
    Mikhail
    Participant

    Catherine Poole wrote:

    Yes, those two do not mix well and a trial had to stopped with the combo of IPI/Zelboraf because of liver toxicity. Sequentially, not a bad idea though.


    In Russia we are forced to buy Zelboraf for our own money. Therefore he recommened to reduce dose of Zelboraf to 3 tablets twice a day for a while she remain on it. He told that there is no reduction of effectiveness of Zelboraf in this case.

    How do you feel about it?

    #64353
    Catherine Poole
    Keymaster

    I am not sure I understand your doctor’s advice. There is no chemo that works for melanoma. So taking a breaking and going on chemo wouldn’t be an optimal choice. Is he meaning dacarbazine for the chemo? It definitely has little or no response rate for melanoma. Sounds like many economics is at play here. Usually if a drug is working, in the U.S., the docs do not want to mess with it and the patient continues on it until there is a sign of progression. I hope that is helpful to you.

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