› Forums › General Melanoma Community › Zelboraf does it take time to work?
- This topic has 18 replies, 5 voices, and was last updated 10 years, 6 months ago by
shonnat.
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- October 26, 2013 at 10:40 pm
My husband was diagnosed in June with stage 1V mel. 3 tumors in the brain and one lymph node in armpit and one in abdomen. 1 brain tumor was 2.5cm and symptomatic and become 3cm within 2 months. The other 2 smaller and stable and have not changed since diagnosis. Was given wbr immediately and then a decision to have gamma knife surgery about 6 weeks later on the large tumor. Once that was done he started on Zelboraf. He has been on Zel for 2 months with no response in the body or brain. Few side effects from taking it though.
About a month after gamma knife his scan showed slight shrinkage but his presenting neurological symptoms are worse than before surgery. He has lost the use of hand and leg on one side of his body They say its the brain swelling and he is on high dose steroids.
They are not helping either. We will wait and see if it can get better. It takes 3 months they say for radiation to fully work.
We are being treated at the BC cancer agency which I believe is very good.
His medical oncologist is surprised that Zel is not showing results. It usually acts fast. Does anyone have experience of it kicking in later. She is waiting another month to see if there are changes then she is thinking of trying Temador as it crosses the BB and he has hardly any issues with mel anywhere else. Has anyone had any success with it for the brain? We could try IPI but maybe later as it doesn't seem to have a high % of success with brain mets, or am I misinformed.
Its very tough as we have had not much success in any area.
Any suggestions or positive experiences could really help at this point.
Thanks
Anna
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- October 27, 2013 at 2:41 am
Hi, Anna-
I am sorry that your husband is havfing such dificulties now. It sounds like his case is very much like my brother's. I don't know anything about the Canadian health care system, but if you can get your husband to a melanoma specialty center (what we call a "center of excellence") that would be a very good thing to do. Melanoma treatments are progressing so quickly that general oncologists and radiologists can't possibly keep up with developments. Please get your husband to a melanoma specialist if you possibly can.
When my brother was diagnosed stage IV he had 5 brain tumors (plus many others in his body). He had whole brain radiation, which started to ease his symptoms (speech aphasia and right-side weakness) within a week. He continued to improve over the next 3 or 4 weeks and then stayed stable for another couple of months. So I would say that if the WBR worked for your husband you should see some positive results within 2 weeks and maximum results within about 4 weeks. The positive effects last another 3 or 4 months. This is what my brother's radiation oncologist predicted and it is what happened.
High dose steroids eased my brother's symptoms immediately–within 24 hours. By "high dose steroids" I mean 16 mg/day of dexamethazone (which is much stronger than predazone). When he was discharged from the hosptial, the dose was reduced to 8 mg/day of dex which was gradually decreased over the course of 2 or 3 weeks. The steroids helped to relieve his symptoms a lot, but they made him feel very fatigued (which WBR does, too).
Zelboraf only works in about 50% of the patients who take it. When it works, it works quickly. Most people who have tumors visible under their skin see them start to shrink within a week or two. If your husband has seen no benefit from Zelboraf after 2 months, he is probably not responding to it.
It sounds like your husband's melanoma is being particularly resistant to treatment so I really think he should at least consult with a melanoma specialist as soon as possible. There are some Canadians on this forum who may be able to suggest a good melanoma clinic for you. You can also post your questions on the Melanoma International Foundation forum– they have a lot more international members than we do.
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- October 27, 2013 at 3:17 am
Thanks for your reply. We are being seen at the BC cancer agency its considered one of the best centres in North America and we are seeing good doctors but I like to hear from others too. The more you know the better I think.
For some reason nothing is working well and we just have to try anything we can.
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- October 27, 2013 at 4:30 am
It used to be that BC didn't have a melanoma specialist – the closest was in Edmonton, I think. (Not sure if that has changed recently). I've known quite a few BCers head down to Seattle to get a second opinion there from melanoma specialists. Some were treated there, some were treated in BC, some did both. You'd probably have more access to some type of clinical trial in Seattle and that might be something to consider.
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- October 27, 2013 at 4:30 am
It used to be that BC didn't have a melanoma specialist – the closest was in Edmonton, I think. (Not sure if that has changed recently). I've known quite a few BCers head down to Seattle to get a second opinion there from melanoma specialists. Some were treated there, some were treated in BC, some did both. You'd probably have more access to some type of clinical trial in Seattle and that might be something to consider.
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- October 27, 2013 at 4:30 am
It used to be that BC didn't have a melanoma specialist – the closest was in Edmonton, I think. (Not sure if that has changed recently). I've known quite a few BCers head down to Seattle to get a second opinion there from melanoma specialists. Some were treated there, some were treated in BC, some did both. You'd probably have more access to some type of clinical trial in Seattle and that might be something to consider.
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- October 27, 2013 at 12:17 pm
Unfortunately, you can't get into clinical trials if you have active brain mets. And you may have to pay out of pocket in Seattle. Best to see if the brain problems become stable and enter the trials in Canada. There is Pd1 there and others. BC Cancer center is a great choice. Montreal has some good trials too.
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- October 27, 2013 at 12:17 pm
Unfortunately, you can't get into clinical trials if you have active brain mets. And you may have to pay out of pocket in Seattle. Best to see if the brain problems become stable and enter the trials in Canada. There is Pd1 there and others. BC Cancer center is a great choice. Montreal has some good trials too.
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- October 27, 2013 at 12:17 pm
Unfortunately, you can't get into clinical trials if you have active brain mets. And you may have to pay out of pocket in Seattle. Best to see if the brain problems become stable and enter the trials in Canada. There is Pd1 there and others. BC Cancer center is a great choice. Montreal has some good trials too.
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- October 27, 2013 at 3:17 am
Thanks for your reply. We are being seen at the BC cancer agency its considered one of the best centres in North America and we are seeing good doctors but I like to hear from others too. The more you know the better I think.
For some reason nothing is working well and we just have to try anything we can.
-
- October 27, 2013 at 3:17 am
Thanks for your reply. We are being seen at the BC cancer agency its considered one of the best centres in North America and we are seeing good doctors but I like to hear from others too. The more you know the better I think.
For some reason nothing is working well and we just have to try anything we can.
-
- October 27, 2013 at 2:41 am
Hi, Anna-
I am sorry that your husband is havfing such dificulties now. It sounds like his case is very much like my brother's. I don't know anything about the Canadian health care system, but if you can get your husband to a melanoma specialty center (what we call a "center of excellence") that would be a very good thing to do. Melanoma treatments are progressing so quickly that general oncologists and radiologists can't possibly keep up with developments. Please get your husband to a melanoma specialist if you possibly can.
When my brother was diagnosed stage IV he had 5 brain tumors (plus many others in his body). He had whole brain radiation, which started to ease his symptoms (speech aphasia and right-side weakness) within a week. He continued to improve over the next 3 or 4 weeks and then stayed stable for another couple of months. So I would say that if the WBR worked for your husband you should see some positive results within 2 weeks and maximum results within about 4 weeks. The positive effects last another 3 or 4 months. This is what my brother's radiation oncologist predicted and it is what happened.
High dose steroids eased my brother's symptoms immediately–within 24 hours. By "high dose steroids" I mean 16 mg/day of dexamethazone (which is much stronger than predazone). When he was discharged from the hosptial, the dose was reduced to 8 mg/day of dex which was gradually decreased over the course of 2 or 3 weeks. The steroids helped to relieve his symptoms a lot, but they made him feel very fatigued (which WBR does, too).
Zelboraf only works in about 50% of the patients who take it. When it works, it works quickly. Most people who have tumors visible under their skin see them start to shrink within a week or two. If your husband has seen no benefit from Zelboraf after 2 months, he is probably not responding to it.
It sounds like your husband's melanoma is being particularly resistant to treatment so I really think he should at least consult with a melanoma specialist as soon as possible. There are some Canadians on this forum who may be able to suggest a good melanoma clinic for you. You can also post your questions on the Melanoma International Foundation forum– they have a lot more international members than we do.
-
- October 27, 2013 at 2:41 am
Hi, Anna-
I am sorry that your husband is havfing such dificulties now. It sounds like his case is very much like my brother's. I don't know anything about the Canadian health care system, but if you can get your husband to a melanoma specialty center (what we call a "center of excellence") that would be a very good thing to do. Melanoma treatments are progressing so quickly that general oncologists and radiologists can't possibly keep up with developments. Please get your husband to a melanoma specialist if you possibly can.
When my brother was diagnosed stage IV he had 5 brain tumors (plus many others in his body). He had whole brain radiation, which started to ease his symptoms (speech aphasia and right-side weakness) within a week. He continued to improve over the next 3 or 4 weeks and then stayed stable for another couple of months. So I would say that if the WBR worked for your husband you should see some positive results within 2 weeks and maximum results within about 4 weeks. The positive effects last another 3 or 4 months. This is what my brother's radiation oncologist predicted and it is what happened.
High dose steroids eased my brother's symptoms immediately–within 24 hours. By "high dose steroids" I mean 16 mg/day of dexamethazone (which is much stronger than predazone). When he was discharged from the hosptial, the dose was reduced to 8 mg/day of dex which was gradually decreased over the course of 2 or 3 weeks. The steroids helped to relieve his symptoms a lot, but they made him feel very fatigued (which WBR does, too).
Zelboraf only works in about 50% of the patients who take it. When it works, it works quickly. Most people who have tumors visible under their skin see them start to shrink within a week or two. If your husband has seen no benefit from Zelboraf after 2 months, he is probably not responding to it.
It sounds like your husband's melanoma is being particularly resistant to treatment so I really think he should at least consult with a melanoma specialist as soon as possible. There are some Canadians on this forum who may be able to suggest a good melanoma clinic for you. You can also post your questions on the Melanoma International Foundation forum– they have a lot more international members than we do.
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