› Forums › General Melanoma Community › January scans on Vemurafenib
- This topic has 36 replies, 5 voices, and was last updated 13 years, 11 months ago by
deardad.
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- January 10, 2012 at 7:54 am
Dads 4th month results on Vemurafenib show tumors are continuing to shrink.
We can breathe until the next scans.
Dad has lost a lot of hair, almost all his body hair, very thin on top and almost all his eyebrows and moustache. He still has joint pain, but has energy. Certainly hasn't lost his sense of humor. We go with the good and worry when we have to.
My heart goes out to all.
Nahmi from Melbourne
Dads 4th month results on Vemurafenib show tumors are continuing to shrink.
We can breathe until the next scans.
Dad has lost a lot of hair, almost all his body hair, very thin on top and almost all his eyebrows and moustache. He still has joint pain, but has energy. Certainly hasn't lost his sense of humor. We go with the good and worry when we have to.
My heart goes out to all.
Nahmi from Melbourne
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- January 10, 2012 at 7:44 pm
Great news about the scans; not so great about the hair and continued joint pain. Happy to hear about the sense of humor, mine was never impacted and I think that really helped. How often does your dad get scans? Mine are every six weeks.
Dick
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- January 10, 2012 at 10:08 pm
Hi thanks for the kind words.
Dick, Dad gets scans every 4 weeks. He has one the best oncologists in Melbourne, so he is very fortunate and I feel assured that he is getting the best care here possible.
Dads always had a full head of hair with very few grey hairs for a 64 yr old, so loosing the hair is getting to him. The joint pain is manageable he says, it's more the hair loss. But as long as the cancer is not active, I say take the hair.
Nahmi from Melbourne
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- January 10, 2012 at 10:08 pm
Hi thanks for the kind words.
Dick, Dad gets scans every 4 weeks. He has one the best oncologists in Melbourne, so he is very fortunate and I feel assured that he is getting the best care here possible.
Dads always had a full head of hair with very few grey hairs for a 64 yr old, so loosing the hair is getting to him. The joint pain is manageable he says, it's more the hair loss. But as long as the cancer is not active, I say take the hair.
Nahmi from Melbourne
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- January 10, 2012 at 10:08 pm
Hi thanks for the kind words.
Dick, Dad gets scans every 4 weeks. He has one the best oncologists in Melbourne, so he is very fortunate and I feel assured that he is getting the best care here possible.
Dads always had a full head of hair with very few grey hairs for a 64 yr old, so loosing the hair is getting to him. The joint pain is manageable he says, it's more the hair loss. But as long as the cancer is not active, I say take the hair.
Nahmi from Melbourne
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- January 11, 2012 at 12:46 am
Nahmi, it is great that your dad's tumours are continuing to shrink! It is also encouraging that he has energy, although joint pain and hair loss are a concern.
Take care
Frank from Australia
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- January 11, 2012 at 9:16 am
Nahmi, I am just wondering about the joint pain. If it has been caused by vemurafenib
treatment there is probably not a lot that can be done about it. See:
http://www.drugs.com/sfx/zelboraf-side-effects.htmlHowever, some people who are low in vitamin D may have generalised pain that is
difficult to diagnose. A simple blood test is the easiest way to find out if your dad
actually has low levels of this vitamin.Take care
Frank from Australia
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- January 11, 2012 at 9:16 am
Nahmi, I am just wondering about the joint pain. If it has been caused by vemurafenib
treatment there is probably not a lot that can be done about it. See:
http://www.drugs.com/sfx/zelboraf-side-effects.htmlHowever, some people who are low in vitamin D may have generalised pain that is
difficult to diagnose. A simple blood test is the easiest way to find out if your dad
actually has low levels of this vitamin.Take care
Frank from Australia
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- January 11, 2012 at 9:16 am
Nahmi, I am just wondering about the joint pain. If it has been caused by vemurafenib
treatment there is probably not a lot that can be done about it. See:
http://www.drugs.com/sfx/zelboraf-side-effects.htmlHowever, some people who are low in vitamin D may have generalised pain that is
difficult to diagnose. A simple blood test is the easiest way to find out if your dad
actually has low levels of this vitamin.Take care
Frank from Australia
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- January 11, 2012 at 12:46 am
Nahmi, it is great that your dad's tumours are continuing to shrink! It is also encouraging that he has energy, although joint pain and hair loss are a concern.
Take care
Frank from Australia
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- January 11, 2012 at 12:46 am
Nahmi, it is great that your dad's tumours are continuing to shrink! It is also encouraging that he has energy, although joint pain and hair loss are a concern.
Take care
Frank from Australia
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- January 11, 2012 at 3:13 am
I am so happy to hear this Niaomi. I am on my first month of Zelboraf. I had brain mets – 2 removed and one zapped. Hoping for similar results. Does your dad have a plan in the case the cancer returns? I am curious to know how others are planning for this. I would like to go to temodar or ipi – with the hope of killing the disease.
All the best to you and your dad. More good scans are coming!
David
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- January 11, 2012 at 8:23 am
Hi David, Im sorry you've been through so much. I'm not completely sure whats next, I know many warriors here really do a lot of research and play a huge role in what treatment they will take next. My dad does not ask such question, I do…and although my dad's oncologist is one of the best in town he really doesn't give out too much info. The last I spoke to him we discussed MEK as the next step, or IPI. I am thinking more antiPD1 but its still very new here so it depends on the trials available. Is Temador a form of chemo?
Hang in there David and stay positive, there's no reason why BRAF won't do it's magic on you too.
Take care and let me know how you go.
All the best
Nahmi from Melbourne
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- January 11, 2012 at 8:23 am
Hi David, Im sorry you've been through so much. I'm not completely sure whats next, I know many warriors here really do a lot of research and play a huge role in what treatment they will take next. My dad does not ask such question, I do…and although my dad's oncologist is one of the best in town he really doesn't give out too much info. The last I spoke to him we discussed MEK as the next step, or IPI. I am thinking more antiPD1 but its still very new here so it depends on the trials available. Is Temador a form of chemo?
Hang in there David and stay positive, there's no reason why BRAF won't do it's magic on you too.
Take care and let me know how you go.
All the best
Nahmi from Melbourne
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- January 11, 2012 at 8:23 am
Hi David, Im sorry you've been through so much. I'm not completely sure whats next, I know many warriors here really do a lot of research and play a huge role in what treatment they will take next. My dad does not ask such question, I do…and although my dad's oncologist is one of the best in town he really doesn't give out too much info. The last I spoke to him we discussed MEK as the next step, or IPI. I am thinking more antiPD1 but its still very new here so it depends on the trials available. Is Temador a form of chemo?
Hang in there David and stay positive, there's no reason why BRAF won't do it's magic on you too.
Take care and let me know how you go.
All the best
Nahmi from Melbourne
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- January 11, 2012 at 2:59 pm
I have had 3 months of Zelboraf and my CT scan of 4 weeks ago showed the lung/lymph tumors are shrinking. A new subcutaneous nodule had fully resolved and no new tumors to report. When I was first diagnosed stage IV, I had 2 brain mets-they were treated with cyberknife. During my wait and see how the brain is doing, I took Temodar for 2 months. The CT of the body showed substantial increase in all the tumors, and the brain MRI showed 10 new tumors, only 1 was larger than 1 cm, the rest were measured in mm. The Temodar did not benefit me in this instance. I was fatigued and felt like I was 90 y.o. with the joint pain, weakness, stiffness. I had WBRT for the 10 tumors and they are resolved with the larger tumor only 4mm. I have not taken the Ipi yet but will if presented.
Are you having any skin issues yet with the Zelboraf? Within 2 wks of starting the med I had a full body rash. Took a short drug holiday and after resuming at the max dose, the rash continued. The dose was reduced to 3 tabs BID. I continue to have facial skin issues. I hope you have great success with the Zelboraf.
Karen
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- January 11, 2012 at 2:59 pm
I have had 3 months of Zelboraf and my CT scan of 4 weeks ago showed the lung/lymph tumors are shrinking. A new subcutaneous nodule had fully resolved and no new tumors to report. When I was first diagnosed stage IV, I had 2 brain mets-they were treated with cyberknife. During my wait and see how the brain is doing, I took Temodar for 2 months. The CT of the body showed substantial increase in all the tumors, and the brain MRI showed 10 new tumors, only 1 was larger than 1 cm, the rest were measured in mm. The Temodar did not benefit me in this instance. I was fatigued and felt like I was 90 y.o. with the joint pain, weakness, stiffness. I had WBRT for the 10 tumors and they are resolved with the larger tumor only 4mm. I have not taken the Ipi yet but will if presented.
Are you having any skin issues yet with the Zelboraf? Within 2 wks of starting the med I had a full body rash. Took a short drug holiday and after resuming at the max dose, the rash continued. The dose was reduced to 3 tabs BID. I continue to have facial skin issues. I hope you have great success with the Zelboraf.
Karen
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- January 11, 2012 at 10:23 pm
Hi Karen,
Sorry to hear how much you have been through, I am dreading my dad having to have any form of chemo.
My dad had a full body rash from within 2 weeks of the drug as well and he still has it all over but not on his face. He in on the maximum dose. He continues to get skin growths all over and he's seeing the derm today actually for a check up.
I really hope Karen that the drug continues for you like is has for Dick.
Take caring and thinking of you all
Nahmi from Melboune
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- January 11, 2012 at 10:23 pm
Hi Karen,
Sorry to hear how much you have been through, I am dreading my dad having to have any form of chemo.
My dad had a full body rash from within 2 weeks of the drug as well and he still has it all over but not on his face. He in on the maximum dose. He continues to get skin growths all over and he's seeing the derm today actually for a check up.
I really hope Karen that the drug continues for you like is has for Dick.
Take caring and thinking of you all
Nahmi from Melboune
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- January 11, 2012 at 10:23 pm
Hi Karen,
Sorry to hear how much you have been through, I am dreading my dad having to have any form of chemo.
My dad had a full body rash from within 2 weeks of the drug as well and he still has it all over but not on his face. He in on the maximum dose. He continues to get skin growths all over and he's seeing the derm today actually for a check up.
I really hope Karen that the drug continues for you like is has for Dick.
Take caring and thinking of you all
Nahmi from Melboune
-
- January 11, 2012 at 2:59 pm
I have had 3 months of Zelboraf and my CT scan of 4 weeks ago showed the lung/lymph tumors are shrinking. A new subcutaneous nodule had fully resolved and no new tumors to report. When I was first diagnosed stage IV, I had 2 brain mets-they were treated with cyberknife. During my wait and see how the brain is doing, I took Temodar for 2 months. The CT of the body showed substantial increase in all the tumors, and the brain MRI showed 10 new tumors, only 1 was larger than 1 cm, the rest were measured in mm. The Temodar did not benefit me in this instance. I was fatigued and felt like I was 90 y.o. with the joint pain, weakness, stiffness. I had WBRT for the 10 tumors and they are resolved with the larger tumor only 4mm. I have not taken the Ipi yet but will if presented.
Are you having any skin issues yet with the Zelboraf? Within 2 wks of starting the med I had a full body rash. Took a short drug holiday and after resuming at the max dose, the rash continued. The dose was reduced to 3 tabs BID. I continue to have facial skin issues. I hope you have great success with the Zelboraf.
Karen
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- January 11, 2012 at 3:13 am
I am so happy to hear this Niaomi. I am on my first month of Zelboraf. I had brain mets – 2 removed and one zapped. Hoping for similar results. Does your dad have a plan in the case the cancer returns? I am curious to know how others are planning for this. I would like to go to temodar or ipi – with the hope of killing the disease.
All the best to you and your dad. More good scans are coming!
David
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- January 11, 2012 at 3:13 am
I am so happy to hear this Niaomi. I am on my first month of Zelboraf. I had brain mets – 2 removed and one zapped. Hoping for similar results. Does your dad have a plan in the case the cancer returns? I am curious to know how others are planning for this. I would like to go to temodar or ipi – with the hope of killing the disease.
All the best to you and your dad. More good scans are coming!
David
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