› Forums › General Melanoma Community › Ques to ask doctor after mixed response on zelboraf
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frosbac.
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- January 9, 2012 at 3:40 pm
Hi everyone,
I am hopeful in this New year and wish for all of you strength, hope and faith to help you thru this year.
I am writing to ask for help with questions I should be asking my oncologist at our appt this week.
Hi everyone,
I am hopeful in this New year and wish for all of you strength, hope and faith to help you thru this year.
I am writing to ask for help with questions I should be asking my oncologist at our appt this week.
I am 5 months on zelboraf. I had 50% reduction in lung and liver at 2 month scans. 4 month scans showed no change in lung and liver but 3 very agressive tumors had grown around abdomen and a small growth in my neck. Brain mri came back clear thankfully. I had surgery 12/19 to remove 3 tumors in abdomen and am recovering well from that.
We go in this week to discuss where we go from here with my oncologist Dr Lawrence. I believe his plan is to stay on zelboraf and keep controlling lung and liver and HOPE that no new tumor grow giving zelboraf time to further shrink lung and liver He mentioned scans now once a month I believe. THe plan is to go to ippi if lung and liver shrink and/or if it looks like zelboraf is no longer working.
I would appreciate any help in being armed with questions that I should be asking at this appt.
I had asked about PD-1 trials but was told at this time none open for me, should I be doing research myself and try to get myself in to trials not wait?
I wonder if my tumors in lung (2.7x.9cm) and liver (2.0×1.5cm segment 5/6 lesion with capsular retraction) are too big and changing to ippi or pd-1 is not something my doctor will want to do fearing the slower response rate will give lung and liver too much time to grow?
I wonder should I be asking to get a second opinon from Sloan Kettering or NIH? even thou I believe Dr Lawrence is one of the best melanoma specialists in Boston and stays up to date with other hospitals on recent results?
I am hoping to go in and ask doctor for laymans terms of what exactly is happening in my body, seems stupid that I havent already, I just get parzlyed when in appt and try to absorb it all but get overwhelmed with whats going on and dont know what to ask. my husband is similar to me so we both need help with this.
Thank you for ANY input, questions to ask, thing we should be considering that we havent etc.
thank you and you are all in my prayers
laurie from maine
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- January 9, 2012 at 5:44 pm
I have been on Zelboraf since late Sept of this year. I was not ready for it prior to that due to whole brain radiation for brain mets. Started the meds the day after radiation ended for lung and lymph node tumors in my chest. The meds are doing their job as of this last scan in Dec. Not completely gone but moving in the right direction.
I always bring an arsenal of questions with me to each appt. because I would get side-tracked while I'm there. Discussions of test results and changes in treatment plans can make anyone forget what they wanted to ask. So you believe that your MD may add Yervoy to your treatment plan this coming visit? Are you on the max dose of Zelboraf of 8-240 mg tabs daily? My dose was lowered to 6 tabs daily due to an extreme body rash. My radiation onc. was considering radiation to my lung/lymph tumors to help slow the progression. You may ask if this is an option. I don't know how they approach radiation following your recent surgery. I know that I did not want to have whole brain radiation, but it did prove beneficial-out of 10 small tumors, 9 are gone and the largest has shrunk to 4mm. Since the Zelboraf is decreasing my body tumors, there is no need to utilize radiation at this time, but I would have been willing to try that option.
Every case is different, which makes it difficult to know how this will go for you. I have not been given Yervoy at this point but would be willing to try it, even while continuing Zelboraf. There hasn't been a trial that I'm aware of with both drugs being administered at the same time. But if my MD was willing to try it I would be willing to give it a shot. I know melanoma is noted for being chemo and radiation resistant, but in my case, the radiation worked on my brain mets. I don't know how long this med will work on me, but it has extended my overall survival at this point. Your MD is being proactive with ordered monthly scans so he can determine which way to go with your treatment plan. I know how disappointing it is to hear negative results following a scan.
I was told that another trial should be ready within the next few months, My doc would not share with me exactly what it entailed but said I could possibly benefit from it. So keep your ear to the ground and talk to your MD about staying abreast of the latest trial options available for you. I wish you well with your treatments. Never lose hope. And don't be afraid to ask where you stand in this-no question is too stupid. You and your husband are your best advocates.
Laurie from Maine, I will say a prayer for you.
Karen H
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- January 9, 2012 at 5:44 pm
I have been on Zelboraf since late Sept of this year. I was not ready for it prior to that due to whole brain radiation for brain mets. Started the meds the day after radiation ended for lung and lymph node tumors in my chest. The meds are doing their job as of this last scan in Dec. Not completely gone but moving in the right direction.
I always bring an arsenal of questions with me to each appt. because I would get side-tracked while I'm there. Discussions of test results and changes in treatment plans can make anyone forget what they wanted to ask. So you believe that your MD may add Yervoy to your treatment plan this coming visit? Are you on the max dose of Zelboraf of 8-240 mg tabs daily? My dose was lowered to 6 tabs daily due to an extreme body rash. My radiation onc. was considering radiation to my lung/lymph tumors to help slow the progression. You may ask if this is an option. I don't know how they approach radiation following your recent surgery. I know that I did not want to have whole brain radiation, but it did prove beneficial-out of 10 small tumors, 9 are gone and the largest has shrunk to 4mm. Since the Zelboraf is decreasing my body tumors, there is no need to utilize radiation at this time, but I would have been willing to try that option.
Every case is different, which makes it difficult to know how this will go for you. I have not been given Yervoy at this point but would be willing to try it, even while continuing Zelboraf. There hasn't been a trial that I'm aware of with both drugs being administered at the same time. But if my MD was willing to try it I would be willing to give it a shot. I know melanoma is noted for being chemo and radiation resistant, but in my case, the radiation worked on my brain mets. I don't know how long this med will work on me, but it has extended my overall survival at this point. Your MD is being proactive with ordered monthly scans so he can determine which way to go with your treatment plan. I know how disappointing it is to hear negative results following a scan.
I was told that another trial should be ready within the next few months, My doc would not share with me exactly what it entailed but said I could possibly benefit from it. So keep your ear to the ground and talk to your MD about staying abreast of the latest trial options available for you. I wish you well with your treatments. Never lose hope. And don't be afraid to ask where you stand in this-no question is too stupid. You and your husband are your best advocates.
Laurie from Maine, I will say a prayer for you.
Karen H
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- January 9, 2012 at 5:44 pm
I have been on Zelboraf since late Sept of this year. I was not ready for it prior to that due to whole brain radiation for brain mets. Started the meds the day after radiation ended for lung and lymph node tumors in my chest. The meds are doing their job as of this last scan in Dec. Not completely gone but moving in the right direction.
I always bring an arsenal of questions with me to each appt. because I would get side-tracked while I'm there. Discussions of test results and changes in treatment plans can make anyone forget what they wanted to ask. So you believe that your MD may add Yervoy to your treatment plan this coming visit? Are you on the max dose of Zelboraf of 8-240 mg tabs daily? My dose was lowered to 6 tabs daily due to an extreme body rash. My radiation onc. was considering radiation to my lung/lymph tumors to help slow the progression. You may ask if this is an option. I don't know how they approach radiation following your recent surgery. I know that I did not want to have whole brain radiation, but it did prove beneficial-out of 10 small tumors, 9 are gone and the largest has shrunk to 4mm. Since the Zelboraf is decreasing my body tumors, there is no need to utilize radiation at this time, but I would have been willing to try that option.
Every case is different, which makes it difficult to know how this will go for you. I have not been given Yervoy at this point but would be willing to try it, even while continuing Zelboraf. There hasn't been a trial that I'm aware of with both drugs being administered at the same time. But if my MD was willing to try it I would be willing to give it a shot. I know melanoma is noted for being chemo and radiation resistant, but in my case, the radiation worked on my brain mets. I don't know how long this med will work on me, but it has extended my overall survival at this point. Your MD is being proactive with ordered monthly scans so he can determine which way to go with your treatment plan. I know how disappointing it is to hear negative results following a scan.
I was told that another trial should be ready within the next few months, My doc would not share with me exactly what it entailed but said I could possibly benefit from it. So keep your ear to the ground and talk to your MD about staying abreast of the latest trial options available for you. I wish you well with your treatments. Never lose hope. And don't be afraid to ask where you stand in this-no question is too stupid. You and your husband are your best advocates.
Laurie from Maine, I will say a prayer for you.
Karen H
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- January 9, 2012 at 9:20 pm
Laurie,
mixed results mean that your mel is acting on other pathways or further down the ras pathway…corner your doc and ask specifically WHY the Zel isn't working and what is he going to do about it…can he combine the Zel with yervoy? ( i think there is an upcoming study that combines the two and i think Flarhety is doing it, but you will have to research) can he start looking for other drugs/ trials…
right now there are a bunch of frustrated zelboraf users because it stops working yet we have no trials that work further down ras pathway other than MEK which has lots of side effects…they need to open up Braf/Mek trials to prior verimufenib users…
boots
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- January 9, 2012 at 11:21 pm
Laurie,
i researched for Braf Yervoy trial and there ain't no such animal…it was talked about but nothing has come of it so far….so i spoke out of turn..sorry…
there is not a lot we can do…you can try yervoy, anti-PD1 or IL2…or even MEK trials…
boots
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- January 9, 2012 at 11:21 pm
Laurie,
i researched for Braf Yervoy trial and there ain't no such animal…it was talked about but nothing has come of it so far….so i spoke out of turn..sorry…
there is not a lot we can do…you can try yervoy, anti-PD1 or IL2…or even MEK trials…
boots
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- January 9, 2012 at 11:21 pm
Laurie,
i researched for Braf Yervoy trial and there ain't no such animal…it was talked about but nothing has come of it so far….so i spoke out of turn..sorry…
there is not a lot we can do…you can try yervoy, anti-PD1 or IL2…or even MEK trials…
boots
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- January 9, 2012 at 9:20 pm
Laurie,
mixed results mean that your mel is acting on other pathways or further down the ras pathway…corner your doc and ask specifically WHY the Zel isn't working and what is he going to do about it…can he combine the Zel with yervoy? ( i think there is an upcoming study that combines the two and i think Flarhety is doing it, but you will have to research) can he start looking for other drugs/ trials…
right now there are a bunch of frustrated zelboraf users because it stops working yet we have no trials that work further down ras pathway other than MEK which has lots of side effects…they need to open up Braf/Mek trials to prior verimufenib users…
boots
-
- January 9, 2012 at 9:20 pm
Laurie,
mixed results mean that your mel is acting on other pathways or further down the ras pathway…corner your doc and ask specifically WHY the Zel isn't working and what is he going to do about it…can he combine the Zel with yervoy? ( i think there is an upcoming study that combines the two and i think Flarhety is doing it, but you will have to research) can he start looking for other drugs/ trials…
right now there are a bunch of frustrated zelboraf users because it stops working yet we have no trials that work further down ras pathway other than MEK which has lots of side effects…they need to open up Braf/Mek trials to prior verimufenib users…
boots
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- January 10, 2012 at 1:04 am
Laurie, I just want to concur with Boots regarding what she has said about Zelboraf
(also known as PLX4032 or vemurafenib).You may have seen the following abstract: "Vemurafenib (PLX4032) promotes epigenetic
changes in melanoma cells leading to development of more invasive metastatic disease"
See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full (near top
of page). See also:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/vemurafenib-plx4032-promotes-epigenetic-changes-meI think that a second opinion is always a good idea. I also think that Yervoy is a great
option now. Other possible treatments could include IL-2 (interleukin-2) by itself or as
part of TIL treatment (adoptive cell therapy).You remain in my prayers.
Frank from Australia
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- January 10, 2012 at 1:04 am
Laurie, I just want to concur with Boots regarding what she has said about Zelboraf
(also known as PLX4032 or vemurafenib).You may have seen the following abstract: "Vemurafenib (PLX4032) promotes epigenetic
changes in melanoma cells leading to development of more invasive metastatic disease"
See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full (near top
of page). See also:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/vemurafenib-plx4032-promotes-epigenetic-changes-meI think that a second opinion is always a good idea. I also think that Yervoy is a great
option now. Other possible treatments could include IL-2 (interleukin-2) by itself or as
part of TIL treatment (adoptive cell therapy).You remain in my prayers.
Frank from Australia
-
- January 10, 2012 at 1:04 am
Laurie, I just want to concur with Boots regarding what she has said about Zelboraf
(also known as PLX4032 or vemurafenib).You may have seen the following abstract: "Vemurafenib (PLX4032) promotes epigenetic
changes in melanoma cells leading to development of more invasive metastatic disease"
See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full (near top
of page). See also:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/vemurafenib-plx4032-promotes-epigenetic-changes-meI think that a second opinion is always a good idea. I also think that Yervoy is a great
option now. Other possible treatments could include IL-2 (interleukin-2) by itself or as
part of TIL treatment (adoptive cell therapy).You remain in my prayers.
Frank from Australia
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- February 23, 2012 at 8:25 pm
This disease is so frustrating. I have been playing tug and war with it for sixteen years.
Have been on B-Raf since Sept. Had to reduce dosage due to side effects but it is helping. Before every appt write down your concerns and ask your md. It can be so very frustrating, but hang in there.
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- February 23, 2012 at 8:25 pm
This disease is so frustrating. I have been playing tug and war with it for sixteen years.
Have been on B-Raf since Sept. Had to reduce dosage due to side effects but it is helping. Before every appt write down your concerns and ask your md. It can be so very frustrating, but hang in there.
-
- February 23, 2012 at 8:25 pm
This disease is so frustrating. I have been playing tug and war with it for sixteen years.
Have been on B-Raf since Sept. Had to reduce dosage due to side effects but it is helping. Before every appt write down your concerns and ask your md. It can be so very frustrating, but hang in there.
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