› Forums › General Melanoma Community › Lomustine after 4 month on Zelboraf
- This topic has 24 replies, 4 voices, and was last updated 12 years, 4 months ago by
POW.
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- October 1, 2013 at 6:48 pm
Hi everyone,My mum was on Zelboraf since June 2013. Recently, she began to feel pains in here left shoulder and left side of neck, and generally all around left side, thus she had to begin ibuprofen. Some days ago we also found a bump on her right shoulder.
As mum is not able to move a lot, my dad went to our oncologist for advice. The oncologist said to stop with Zelboraf for now and to begin loumustine. He took a pause till Thursday to advice with the chief oncologist. So the day after tomorrow my dad will go to discuss with them what to do next with our treatment. Right now my mum has stopped Zelboraf for 2 days.
I would like any advice from you. If it is sensible to go with loumustine ? Does someone has expirience with it ? Should we maybe think about new Tafinlar or it is the same as Zelboraf ?
Also, doctor justified his advice about Loumustine, saying that there are braf-mutated cells and non-mutated. Zelboraf was against mutated ones. Loumustine will be against ordinary ones. What can anyone say about this, is it sensible ?
Thank you for answers in advance. Sorry for my English, haven’t been speaking it for years.
Nikita
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- October 1, 2013 at 8:23 pm
Sorry about your mothers problem while on Zelboraf.That drug does have a wide range of side affects.Joint pain is one of them.Never heard of Loumustine.As for my opinion I would switch to Tafinlar as it works in the same way as "Z" but different has a different attackto cancer cells.This drug has milder and less side affects than "Z".Prayers sent your way. Beat the Beast. Al
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- October 1, 2013 at 8:23 pm
Sorry about your mothers problem while on Zelboraf.That drug does have a wide range of side affects.Joint pain is one of them.Never heard of Loumustine.As for my opinion I would switch to Tafinlar as it works in the same way as "Z" but different has a different attackto cancer cells.This drug has milder and less side affects than "Z".Prayers sent your way. Beat the Beast. Al
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- October 1, 2013 at 8:23 pm
Sorry about your mothers problem while on Zelboraf.That drug does have a wide range of side affects.Joint pain is one of them.Never heard of Loumustine.As for my opinion I would switch to Tafinlar as it works in the same way as "Z" but different has a different attackto cancer cells.This drug has milder and less side affects than "Z".Prayers sent your way. Beat the Beast. Al
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- October 1, 2013 at 9:19 pm
I have never heard of Loumustine, either. A quick Google search indicates that it is one of the traditional (i.e., not melanoma specific) chemo drugs and it is supposed to work in the brain as well as elsewhere in the body. It is known to inhibit blood clotting. Non-steroidal anti-inflammatory drugs (NSAIDs) inhibit blood clotting, too, so your mother should not take aspiring or ibuprofen or anything like that for pain while she is on Loumustine. She should ask her doctor for some other type of pain medication.
I have heard the theory that melanoma tumors contain a mixture of BRAF mutated and non-mutated melanoma cells. I have seen no proof for that theory. Certainly, Zelboraf can cause joint pain, sometimes severe. Many people here have taken a 1 or 2 week "Zelboraf holiday" so those side effects go away. Then they start Zelboraf again at a lower dose than before. Sometimes they are able to gradually increase the Zelboraf without experiencing the same bad side effects.
Tafinlar (dabrafenib) has a slightly different chemical structure than does Zelboraf but it also works on BRAF mutated melanoma cells. I don't think we have enough experience with it yet to determine if people who experience severe side effects with Zelboraf will also experience severe side effects with Tafinlar. It's worth a try. And besides, Loumustine will probably have some pretty nasty side-effects, too.
I hope your mother feels better soon. By the way, what country does your mother live in?
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- October 2, 2013 at 11:24 am
Thank you very mush for answer, POW !
We live in Russia. No Zelboraf, no Tafinlar all the more so are registered here, so we need to buy Zelboraf in Belarus.
Mum had a "Zelboraf holiday" in the beggining of August, previously having decreased the dose in July. After holiday she continued the full dose with much less side effects. Now side effects are not very hard, but the doctor says (in absentia, having dads description of bump on her shoulder) that Zelboraf has probably stopped working.
Supposing that there are both BRAF-mutated and non-mutated cells, what would you recomend against non-mutated cells ?
As about Tafinlar, do you know if it is registered and can be bought in Belarus ? If no, where could it be bought right now. As I understood, it was just released in the beggining of september…
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- October 2, 2013 at 11:24 am
Thank you very mush for answer, POW !
We live in Russia. No Zelboraf, no Tafinlar all the more so are registered here, so we need to buy Zelboraf in Belarus.
Mum had a "Zelboraf holiday" in the beggining of August, previously having decreased the dose in July. After holiday she continued the full dose with much less side effects. Now side effects are not very hard, but the doctor says (in absentia, having dads description of bump on her shoulder) that Zelboraf has probably stopped working.
Supposing that there are both BRAF-mutated and non-mutated cells, what would you recomend against non-mutated cells ?
As about Tafinlar, do you know if it is registered and can be bought in Belarus ? If no, where could it be bought right now. As I understood, it was just released in the beggining of september…
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- October 2, 2013 at 12:10 pm
The good thing about Zelboraf is that when it works, it works quickly to shrink melanoma tumors. The bad thing is that the effect does not last very long. Most people become resistant to it within 6-9 months. Of course, when you say "average" that means that some people benefit much longer than 6-9 months and some shorter. Zelboraf worked well for my brother but after 4 months his tumors started to grow again and when they did come back, they came back quickly. Unfortunately, this is normal. Since Zelboraf and Tafinlar have the same mechanism of action on the same BRAF mutations, it is unlikely that Tafinlar would have any effect on Zelboraf resistant cells.
As for what else your mother can try? There isn't much– either in Russia or the US. Historically, melanoma has been known to be unusually resistant to all types of chemo and radiation. That is why the recent introduciton of new treatments like Zelboraf and Yervoy has created so much excitement in the melanoma community. Even though these treatments only work in 15%-30% of patients, those numbers are much, much better than standard chemo.
I'm sorry that I can not provide any brilliant solutions for your mother. She will have to decide whether or not she wants to continue taking the Lomustine and tolerating its side effects. Some patients here do decide to do that (although here we usually use cisplatin and/or temodar as a final attempt at treatment) and hope that they are one of the few who benefit from that. Other patients decide that enough is enough and they don't want to go that route.
I am sorry that your family has to deal with such a heart-breaking situation. I wish you well and will pray for you all to find peace and love with each other.
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- October 2, 2013 at 12:10 pm
The good thing about Zelboraf is that when it works, it works quickly to shrink melanoma tumors. The bad thing is that the effect does not last very long. Most people become resistant to it within 6-9 months. Of course, when you say "average" that means that some people benefit much longer than 6-9 months and some shorter. Zelboraf worked well for my brother but after 4 months his tumors started to grow again and when they did come back, they came back quickly. Unfortunately, this is normal. Since Zelboraf and Tafinlar have the same mechanism of action on the same BRAF mutations, it is unlikely that Tafinlar would have any effect on Zelboraf resistant cells.
As for what else your mother can try? There isn't much– either in Russia or the US. Historically, melanoma has been known to be unusually resistant to all types of chemo and radiation. That is why the recent introduciton of new treatments like Zelboraf and Yervoy has created so much excitement in the melanoma community. Even though these treatments only work in 15%-30% of patients, those numbers are much, much better than standard chemo.
I'm sorry that I can not provide any brilliant solutions for your mother. She will have to decide whether or not she wants to continue taking the Lomustine and tolerating its side effects. Some patients here do decide to do that (although here we usually use cisplatin and/or temodar as a final attempt at treatment) and hope that they are one of the few who benefit from that. Other patients decide that enough is enough and they don't want to go that route.
I am sorry that your family has to deal with such a heart-breaking situation. I wish you well and will pray for you all to find peace and love with each other.
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- October 2, 2013 at 11:49 pm
Hi Nikita,Zelboraf only worked for 6 months for me, and I had many side effects. Once it stopped working, i quickly developed brain metastases. For the past 2 months, I have been on Tafilnar with almost no side effects and my MRI earlier this week showed reduction the brain mets that were treated by Gamma Knife, and no new brain mets were found. Also, before I took Zelbarof, I took Temodar, which is a traditional chemotherapy medication. It had no results at all.
So, as POW said, even though both medications treat the BRAF mutation, the react differently. Many people take Yervoy with great results; it did not work for me, and I had severe side-effects.
You might want to try emailing Catharine Poole at http://www.melanomainternational.org. Many people post from all over the world, and I know I have seen postings from others in Russia.
All the best,
Karen -
- October 3, 2013 at 2:13 am
Hi, Karen-
For some reason it never sunk into my head that you started Tafilnar after you progressed on Zelboraf and the Taflinar worked! I am amazed and delighted. I can't believe your doctor even tried it. Gutsy!
I am happy to be shown to be wrong about that. Do you konw of anyone else who has had the same experience where Tafilnar worked even after the melanoma became resistant to Zelboraf?
Thank you for setting the record straight about that.
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- October 3, 2013 at 2:13 am
Hi, Karen-
For some reason it never sunk into my head that you started Tafilnar after you progressed on Zelboraf and the Taflinar worked! I am amazed and delighted. I can't believe your doctor even tried it. Gutsy!
I am happy to be shown to be wrong about that. Do you konw of anyone else who has had the same experience where Tafilnar worked even after the melanoma became resistant to Zelboraf?
Thank you for setting the record straight about that.
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- October 3, 2013 at 2:13 am
Hi, Karen-
For some reason it never sunk into my head that you started Tafilnar after you progressed on Zelboraf and the Taflinar worked! I am amazed and delighted. I can't believe your doctor even tried it. Gutsy!
I am happy to be shown to be wrong about that. Do you konw of anyone else who has had the same experience where Tafilnar worked even after the melanoma became resistant to Zelboraf?
Thank you for setting the record straight about that.
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- October 2, 2013 at 11:49 pm
Hi Nikita,Zelboraf only worked for 6 months for me, and I had many side effects. Once it stopped working, i quickly developed brain metastases. For the past 2 months, I have been on Tafilnar with almost no side effects and my MRI earlier this week showed reduction the brain mets that were treated by Gamma Knife, and no new brain mets were found. Also, before I took Zelbarof, I took Temodar, which is a traditional chemotherapy medication. It had no results at all.
So, as POW said, even though both medications treat the BRAF mutation, the react differently. Many people take Yervoy with great results; it did not work for me, and I had severe side-effects.
You might want to try emailing Catharine Poole at http://www.melanomainternational.org. Many people post from all over the world, and I know I have seen postings from others in Russia.
All the best,
Karen -
- October 2, 2013 at 11:49 pm
Hi Nikita,Zelboraf only worked for 6 months for me, and I had many side effects. Once it stopped working, i quickly developed brain metastases. For the past 2 months, I have been on Tafilnar with almost no side effects and my MRI earlier this week showed reduction the brain mets that were treated by Gamma Knife, and no new brain mets were found. Also, before I took Zelbarof, I took Temodar, which is a traditional chemotherapy medication. It had no results at all.
So, as POW said, even though both medications treat the BRAF mutation, the react differently. Many people take Yervoy with great results; it did not work for me, and I had severe side-effects.
You might want to try emailing Catharine Poole at http://www.melanomainternational.org. Many people post from all over the world, and I know I have seen postings from others in Russia.
All the best,
Karen -
- October 2, 2013 at 12:10 pm
The good thing about Zelboraf is that when it works, it works quickly to shrink melanoma tumors. The bad thing is that the effect does not last very long. Most people become resistant to it within 6-9 months. Of course, when you say "average" that means that some people benefit much longer than 6-9 months and some shorter. Zelboraf worked well for my brother but after 4 months his tumors started to grow again and when they did come back, they came back quickly. Unfortunately, this is normal. Since Zelboraf and Tafinlar have the same mechanism of action on the same BRAF mutations, it is unlikely that Tafinlar would have any effect on Zelboraf resistant cells.
As for what else your mother can try? There isn't much– either in Russia or the US. Historically, melanoma has been known to be unusually resistant to all types of chemo and radiation. That is why the recent introduciton of new treatments like Zelboraf and Yervoy has created so much excitement in the melanoma community. Even though these treatments only work in 15%-30% of patients, those numbers are much, much better than standard chemo.
I'm sorry that I can not provide any brilliant solutions for your mother. She will have to decide whether or not she wants to continue taking the Lomustine and tolerating its side effects. Some patients here do decide to do that (although here we usually use cisplatin and/or temodar as a final attempt at treatment) and hope that they are one of the few who benefit from that. Other patients decide that enough is enough and they don't want to go that route.
I am sorry that your family has to deal with such a heart-breaking situation. I wish you well and will pray for you all to find peace and love with each other.
-
- October 2, 2013 at 11:24 am
Thank you very mush for answer, POW !
We live in Russia. No Zelboraf, no Tafinlar all the more so are registered here, so we need to buy Zelboraf in Belarus.
Mum had a "Zelboraf holiday" in the beggining of August, previously having decreased the dose in July. After holiday she continued the full dose with much less side effects. Now side effects are not very hard, but the doctor says (in absentia, having dads description of bump on her shoulder) that Zelboraf has probably stopped working.
Supposing that there are both BRAF-mutated and non-mutated cells, what would you recomend against non-mutated cells ?
As about Tafinlar, do you know if it is registered and can be bought in Belarus ? If no, where could it be bought right now. As I understood, it was just released in the beggining of september…
-
- October 1, 2013 at 9:19 pm
I have never heard of Loumustine, either. A quick Google search indicates that it is one of the traditional (i.e., not melanoma specific) chemo drugs and it is supposed to work in the brain as well as elsewhere in the body. It is known to inhibit blood clotting. Non-steroidal anti-inflammatory drugs (NSAIDs) inhibit blood clotting, too, so your mother should not take aspiring or ibuprofen or anything like that for pain while she is on Loumustine. She should ask her doctor for some other type of pain medication.
I have heard the theory that melanoma tumors contain a mixture of BRAF mutated and non-mutated melanoma cells. I have seen no proof for that theory. Certainly, Zelboraf can cause joint pain, sometimes severe. Many people here have taken a 1 or 2 week "Zelboraf holiday" so those side effects go away. Then they start Zelboraf again at a lower dose than before. Sometimes they are able to gradually increase the Zelboraf without experiencing the same bad side effects.
Tafinlar (dabrafenib) has a slightly different chemical structure than does Zelboraf but it also works on BRAF mutated melanoma cells. I don't think we have enough experience with it yet to determine if people who experience severe side effects with Zelboraf will also experience severe side effects with Tafinlar. It's worth a try. And besides, Loumustine will probably have some pretty nasty side-effects, too.
I hope your mother feels better soon. By the way, what country does your mother live in?
-
- October 1, 2013 at 9:19 pm
I have never heard of Loumustine, either. A quick Google search indicates that it is one of the traditional (i.e., not melanoma specific) chemo drugs and it is supposed to work in the brain as well as elsewhere in the body. It is known to inhibit blood clotting. Non-steroidal anti-inflammatory drugs (NSAIDs) inhibit blood clotting, too, so your mother should not take aspiring or ibuprofen or anything like that for pain while she is on Loumustine. She should ask her doctor for some other type of pain medication.
I have heard the theory that melanoma tumors contain a mixture of BRAF mutated and non-mutated melanoma cells. I have seen no proof for that theory. Certainly, Zelboraf can cause joint pain, sometimes severe. Many people here have taken a 1 or 2 week "Zelboraf holiday" so those side effects go away. Then they start Zelboraf again at a lower dose than before. Sometimes they are able to gradually increase the Zelboraf without experiencing the same bad side effects.
Tafinlar (dabrafenib) has a slightly different chemical structure than does Zelboraf but it also works on BRAF mutated melanoma cells. I don't think we have enough experience with it yet to determine if people who experience severe side effects with Zelboraf will also experience severe side effects with Tafinlar. It's worth a try. And besides, Loumustine will probably have some pretty nasty side-effects, too.
I hope your mother feels better soon. By the way, what country does your mother live in?
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