› Forums › General Melanoma Community › braf mek trial
- This topic has 40 replies, 14 voices, and was last updated 12 years, 9 months ago by
mbaelaporte.
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- July 31, 2011 at 8:43 pm
wanted to update everyone on what is going on
i have fast growing mel that spread to lungs and liver since i was initially diagnosed stage 3c in april…found out i am braf + for V600e…and venfenib is not offered here yet…
wanted to update everyone on what is going on
i have fast growing mel that spread to lungs and liver since i was initially diagnosed stage 3c in april…found out i am braf + for V600e…and venfenib is not offered here yet…
i am doing 2nd round of cvd (cisplatin, decarbazine and vinblastin) which is kicking the shit out of me…i get rescanned on the 15th of august and on the 16th, my records and i are going to tampa to moffitt to interview for braf/mek trial there…i did finally find and talk to an onc here in uh-oh (ohio) about yervoy and they seem to want to hold off until my status for trial…when i mean chemo is kicking the shit out of me is
a. i think it is affecting my heart
b. definitely affecting hair loss, bowels and energy
c. i hate this shit
d. i have a 'gut ' feeling it isn't working…just instinct, but i trust my instincts more than oncs here
e.i am scared
f. i feel these oncs don't want to do anything with me (feel this lump here, or there) and go by scans and blood tests alone and don't care about side effects…
g. i don't want to research this crap very much any longer.
boots
- Replies
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- July 31, 2011 at 9:45 pm
Boots,
I'm so sorry you are going through all this crap. I just finished 2 rounds of dacarbazine with no luck and felt very discouraged. There are a few people on this board who have done the "cvd" which you are doing and had results, so hang tight till you get those scans to know for sure. I'm scared too – I'm not BRAF positive, have 15 small nodules in my lungs and quickly onto Plan B, so I feel your fear and your anger and all of it sucks BIGTIME!
I've been going through the angry part of this disease and it's hard not to get pissed off at melanoma and what it's doing to our lives. Being on your chemo combo isn't helping because it makes you feel like crap and with hair loss, etc, is probably making you feel worse. I know this scary, but thank God you are BRAF + since this will give you options and quickly. I think getting into the BRAF trial is key and then down the road you can use ipi.
I truly hope this chemo is slowing things down and even had a chance to kill some of it. Try to remind yourself how strong you are and don't give into this disease.
Hang in there – 2 weeks!!
Lisa
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- July 31, 2011 at 9:45 pm
Boots,
I'm so sorry you are going through all this crap. I just finished 2 rounds of dacarbazine with no luck and felt very discouraged. There are a few people on this board who have done the "cvd" which you are doing and had results, so hang tight till you get those scans to know for sure. I'm scared too – I'm not BRAF positive, have 15 small nodules in my lungs and quickly onto Plan B, so I feel your fear and your anger and all of it sucks BIGTIME!
I've been going through the angry part of this disease and it's hard not to get pissed off at melanoma and what it's doing to our lives. Being on your chemo combo isn't helping because it makes you feel like crap and with hair loss, etc, is probably making you feel worse. I know this scary, but thank God you are BRAF + since this will give you options and quickly. I think getting into the BRAF trial is key and then down the road you can use ipi.
I truly hope this chemo is slowing things down and even had a chance to kill some of it. Try to remind yourself how strong you are and don't give into this disease.
Hang in there – 2 weeks!!
Lisa
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- July 31, 2011 at 11:05 pm
Thinking of you and praying for you Boots. I hope the CVD does slow down the growth some. But do agree that getting into the BRAF/Mek trial as soon as possible sounds like a good idea. If it does its likely effects, maybe you will be one of the long term successes. I would also tend to think about Yervoy as a follow on kicker.
If you need something for the mental effect of this battle, do get it. This battle does indeed wear one down.
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- July 31, 2011 at 11:05 pm
Thinking of you and praying for you Boots. I hope the CVD does slow down the growth some. But do agree that getting into the BRAF/Mek trial as soon as possible sounds like a good idea. If it does its likely effects, maybe you will be one of the long term successes. I would also tend to think about Yervoy as a follow on kicker.
If you need something for the mental effect of this battle, do get it. This battle does indeed wear one down.
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- July 31, 2011 at 11:12 pm
This is tough to hear.. You are always on top of things and I can tell you are getting tired. Have you touched base with Melanoma Network of Canada, perhaps, Annette can help you in your research. Going to Moffitt for b-raf sounds like a positive move, Dr. Weber has an excellent reputation…have you e-mailed him directly. He is amazing and responds. I wish I could pass his e-mail along to you but it is at home and I'm at NIH. I know Jim M. could help you with that one.
Stay strong my young fellow Canadian, if I can help you in whatever way, let me know. Val xx
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- July 31, 2011 at 11:12 pm
This is tough to hear.. You are always on top of things and I can tell you are getting tired. Have you touched base with Melanoma Network of Canada, perhaps, Annette can help you in your research. Going to Moffitt for b-raf sounds like a positive move, Dr. Weber has an excellent reputation…have you e-mailed him directly. He is amazing and responds. I wish I could pass his e-mail along to you but it is at home and I'm at NIH. I know Jim M. could help you with that one.
Stay strong my young fellow Canadian, if I can help you in whatever way, let me know. Val xx
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- August 1, 2011 at 12:33 am
Hey 2B!
You came on here like gang-busters and you've been high rolling ever since. You have attacked and been hard-hitting agressive every step of the way and have won my respect and admiration. I'm pulling for you friend.
Thanks for putting your picture up so we can see your beautiful face and spirit! I'm sorry you're having to deal with all this like you are, but please keep hanging tough and do what you have to do and go where you have to go. I know you're worn out right now, but here's to you making melanoma sorry it ever messed with you. If anybody can do this, you can, 2B!
I'm thinking all the best & positive thoughts I possibly can for you.
Grace and peace and strength for the battle,
Carol
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- August 1, 2011 at 1:11 am
As Carol said, you have been going full steam ahead since you got here. I'm pulling for you too!
As Linda said, there are also locations in Nashville and other areas that may be closer, but maybe Moffitt is what is being recommended.
You can see the trial here:
http://clinicaltrials.gov/ct2/show/NCT01072175?term=braf+mek+melanoma&recr=Open&no_unk=Y&rank=2
As Jerry and others said BRAF/MEK is a good option as far as trials go too.
I have Dr. Weber's email, phone, and web page at Moffitt if you wish to contact him. He does respond usually within 24 hours.
H. Lee Moffitt Cancer Center &
Research Institute
12902 Magnolia Drive
Tampa, FL 33612Weber's Phone: (813) 745-2007
Moffitt web page:
http://www.moffitt.org/Site.aspx?spid=8FE18FA088C4410BA9C8C8556C761308&SearchType=Physician
Hang in there-you can do this. We are all pulling for you!
Michael
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- August 1, 2011 at 1:11 am
As Carol said, you have been going full steam ahead since you got here. I'm pulling for you too!
As Linda said, there are also locations in Nashville and other areas that may be closer, but maybe Moffitt is what is being recommended.
You can see the trial here:
http://clinicaltrials.gov/ct2/show/NCT01072175?term=braf+mek+melanoma&recr=Open&no_unk=Y&rank=2
As Jerry and others said BRAF/MEK is a good option as far as trials go too.
I have Dr. Weber's email, phone, and web page at Moffitt if you wish to contact him. He does respond usually within 24 hours.
H. Lee Moffitt Cancer Center &
Research Institute
12902 Magnolia Drive
Tampa, FL 33612Weber's Phone: (813) 745-2007
Moffitt web page:
http://www.moffitt.org/Site.aspx?spid=8FE18FA088C4410BA9C8C8556C761308&SearchType=Physician
Hang in there-you can do this. We are all pulling for you!
Michael
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- August 1, 2011 at 12:33 am
Hey 2B!
You came on here like gang-busters and you've been high rolling ever since. You have attacked and been hard-hitting agressive every step of the way and have won my respect and admiration. I'm pulling for you friend.
Thanks for putting your picture up so we can see your beautiful face and spirit! I'm sorry you're having to deal with all this like you are, but please keep hanging tough and do what you have to do and go where you have to go. I know you're worn out right now, but here's to you making melanoma sorry it ever messed with you. If anybody can do this, you can, 2B!
I'm thinking all the best & positive thoughts I possibly can for you.
Grace and peace and strength for the battle,
Carol
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- August 1, 2011 at 2:05 am
Boots, I am sorry to read that you are having a really tough time with things at the moment.
It is lucky that you are BRAF V600E positive, so hopefully you can switch to BRAF
inhibitor(s) soon.As I probably mentioned before, I am not convinced by the value of using combinations of
chemo such as CVD. Although the theory sounds really good, I think that they are probably too
toxic for most people. A single agent such as DTIC (decarbazine) is toxic enough, so why
combine it with other forms of chemo if doing this will make most people feel worse with no
real benefit?If you have a feeling that CVD isn't working, then why don't you ask your oncologist if can
you switch to DTIC only – as a temporary measure?Let us research this stuff for you, so if there is anything that you need to know don't
hesitate to ask everyone here.Take care
Frank from Australia
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- August 1, 2011 at 2:05 am
Boots, I am sorry to read that you are having a really tough time with things at the moment.
It is lucky that you are BRAF V600E positive, so hopefully you can switch to BRAF
inhibitor(s) soon.As I probably mentioned before, I am not convinced by the value of using combinations of
chemo such as CVD. Although the theory sounds really good, I think that they are probably too
toxic for most people. A single agent such as DTIC (decarbazine) is toxic enough, so why
combine it with other forms of chemo if doing this will make most people feel worse with no
real benefit?If you have a feeling that CVD isn't working, then why don't you ask your oncologist if can
you switch to DTIC only – as a temporary measure?Let us research this stuff for you, so if there is anything that you need to know don't
hesitate to ask everyone here.Take care
Frank from Australia
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- August 1, 2011 at 9:59 am
Hi,
I hope you can get on a BRAF inhibitor trial or expanded access. There is an issue with resistance and side-effects. Ideally you would want to get a combined BRAFi+MEKi trial which seems to help overcoming some of the resistance, but has less of the nasty side effects that BRAFi might have.
Still, BRAFi by itself seems on paper a good option as after resistance there may be a benefit in moving onto MEKi. Ask your oncologist if you can get vemurafenib on expanded access.
I myself (stage 4 diagnosed in March 11) was 'fortunate' (everything is relative) to be able to get onto the phase 3 MEK inhibitor trial from GSK. There is no point in moving onto BRAFi.
I guess the reason why your oncologist wants to wait for the results and get you onto targeted therapy is to reduce tumour growth (I had 50 to 75% reduction in 6 weeks) which would buy time. Yervoy takes time to kick in and as with any of those drugs, it may not work, something you don't find out until one or two months later.
Boots, keep going and don't give up.
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- August 1, 2011 at 12:32 pm
Tampa site was chosen over tennessee because i have family in the area willing to support me…
braf drugs won't be available in my area until november…
i found this braf/mek trial…and i told my onc that is what i wanted to do and when i told her, she told me it was the first trial she chose to get me on after CVD…
i agree, combo chemo over DTIC or temador…doesn't have the numbers to back it up…onc says do one more round before switching…scans on the 15th…
you guys know this shit was growing like weeds in me…i think the reasoning for chemo was to slow it down for IL2 or trial…because of 30 day wash out and 3 mos…to see if it works or not…
i am going to make sure the chemo doesn't get my heart in bad shape so i am demanding to see a cardio just in case…nothing will stop me to get on trial…my instinct says 'this is the one'…
thanks for your support…i got to get a handle on the mental aspect…it is the weak point in my fight…
boots
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- August 1, 2011 at 12:32 pm
Tampa site was chosen over tennessee because i have family in the area willing to support me…
braf drugs won't be available in my area until november…
i found this braf/mek trial…and i told my onc that is what i wanted to do and when i told her, she told me it was the first trial she chose to get me on after CVD…
i agree, combo chemo over DTIC or temador…doesn't have the numbers to back it up…onc says do one more round before switching…scans on the 15th…
you guys know this shit was growing like weeds in me…i think the reasoning for chemo was to slow it down for IL2 or trial…because of 30 day wash out and 3 mos…to see if it works or not…
i am going to make sure the chemo doesn't get my heart in bad shape so i am demanding to see a cardio just in case…nothing will stop me to get on trial…my instinct says 'this is the one'…
thanks for your support…i got to get a handle on the mental aspect…it is the weak point in my fight…
boots
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- August 1, 2011 at 1:06 pm
Kudos to you for demanding the cardio test. You are thinking in terms of "down the line" I don't think the oncs consider side effects of a treatment and how it may affect future clinical trials or treatments down the road. You are doing a great job of advocating for your own treatment – and when you find the one that works, you can look back and say "I did this".
All the best to you!
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- August 1, 2011 at 1:06 pm
Kudos to you for demanding the cardio test. You are thinking in terms of "down the line" I don't think the oncs consider side effects of a treatment and how it may affect future clinical trials or treatments down the road. You are doing a great job of advocating for your own treatment – and when you find the one that works, you can look back and say "I did this".
All the best to you!
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- August 2, 2011 at 4:28 am
I see Dr Weber too and I sent all my latest scans results, blood work and other reports to him in an attached e mail and gave him a summery of where I was ….he read it and e mailed me back within hour or two. Then I made app't with him… at least for the assessment since the information didn't eliminate me…then we made plans…they still want to do their own testing so it would give you time before treatment begins if accepted…you can go to the moffitt.org site and make the appointment with him…if you don't choose him specifically you may not get him and at Moffitt once you get an onc you keep the onc…they won't let you change later on…ask Dawna or Linda S about that! I really like Dr Weber and the care I get at Moffitt.
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- August 2, 2011 at 4:28 am
I see Dr Weber too and I sent all my latest scans results, blood work and other reports to him in an attached e mail and gave him a summery of where I was ….he read it and e mailed me back within hour or two. Then I made app't with him… at least for the assessment since the information didn't eliminate me…then we made plans…they still want to do their own testing so it would give you time before treatment begins if accepted…you can go to the moffitt.org site and make the appointment with him…if you don't choose him specifically you may not get him and at Moffitt once you get an onc you keep the onc…they won't let you change later on…ask Dawna or Linda S about that! I really like Dr Weber and the care I get at Moffitt.
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- August 2, 2011 at 4:28 am
I see Dr Weber too and I sent all my latest scans results, blood work and other reports to him in an attached e mail and gave him a summery of where I was ….he read it and e mailed me back within hour or two. Then I made app't with him… at least for the assessment since the information didn't eliminate me…then we made plans…they still want to do their own testing so it would give you time before treatment begins if accepted…you can go to the moffitt.org site and make the appointment with him…if you don't choose him specifically you may not get him and at Moffitt once you get an onc you keep the onc…they won't let you change later on…ask Dawna or Linda S about that! I really like Dr Weber and the care I get at Moffitt.
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- August 2, 2011 at 4:28 am
I see Dr Weber too and I sent all my latest scans results, blood work and other reports to him in an attached e mail and gave him a summery of where I was ….he read it and e mailed me back within hour or two. Then I made app't with him… at least for the assessment since the information didn't eliminate me…then we made plans…they still want to do their own testing so it would give you time before treatment begins if accepted…you can go to the moffitt.org site and make the appointment with him…if you don't choose him specifically you may not get him and at Moffitt once you get an onc you keep the onc…they won't let you change later on…ask Dawna or Linda S about that! I really like Dr Weber and the care I get at Moffitt.
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- August 1, 2011 at 9:59 am
Hi,
I hope you can get on a BRAF inhibitor trial or expanded access. There is an issue with resistance and side-effects. Ideally you would want to get a combined BRAFi+MEKi trial which seems to help overcoming some of the resistance, but has less of the nasty side effects that BRAFi might have.
Still, BRAFi by itself seems on paper a good option as after resistance there may be a benefit in moving onto MEKi. Ask your oncologist if you can get vemurafenib on expanded access.
I myself (stage 4 diagnosed in March 11) was 'fortunate' (everything is relative) to be able to get onto the phase 3 MEK inhibitor trial from GSK. There is no point in moving onto BRAFi.
I guess the reason why your oncologist wants to wait for the results and get you onto targeted therapy is to reduce tumour growth (I had 50 to 75% reduction in 6 weeks) which would buy time. Yervoy takes time to kick in and as with any of those drugs, it may not work, something you don't find out until one or two months later.
Boots, keep going and don't give up.
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- August 1, 2011 at 8:37 pm
I really hope you can start a BRAF (preferably BRAF/MEK) trial very soon. We corresponded before, and I'm still doing very well on my BRAF/MEK trial (next scans in 5 weeks, but I'm feeling good and hope this mirrors what's going on inside).
Best wishes,
Harry
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- August 1, 2011 at 8:37 pm
I really hope you can start a BRAF (preferably BRAF/MEK) trial very soon. We corresponded before, and I'm still doing very well on my BRAF/MEK trial (next scans in 5 weeks, but I'm feeling good and hope this mirrors what's going on inside).
Best wishes,
Harry
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- August 2, 2011 at 1:00 am
Harry,
I am so happy that you are doing well on Braf/Mek.
I am interested in the Braf/Mek trial at Angeles Clinic. I posted before & you were so nice to try & find out if the Braf/Mek trial at Angeles clinic was still recruiting for melanoma patients.
I called Angeles Clinic but they would not tell me. They wanted me to make an apointment for a consultation with a doctor but I cannot afford the $500. fee. I do not understand why they just could not tell me it they were still recruiting for the Braf/Mek trial.
Please let me know if you found out if Angeles Clinic is still recruiting for melanoma patients for the Brak/Mek trial.
Harry, thank you so much for you help. My email is [email protected].
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- August 2, 2011 at 2:06 am
Here is what my protocol nurse says:
"Your specific trial is no longer open for the melanoma cohort. Have your friend contact Andrea at (310) 231-2150 and set up a consult with Dr. Hamid so we can see what they are eligible for."
Perhaps they can help you on the money part? Never hurts to ask.
Best wishes,
Harry
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- August 2, 2011 at 12:20 pm
i talked with weber and ellen his clinical nurse…i think the reason for interview is to determine if i qualify….ie ( if i am well enough)…we already discussed wash-out period and when to come see him…he has my records…and we are waiting on next scan-xiety…
i want this trial…i want it…period
the onc giving me the treatment here wants to jettison me because i am
'difficult'…what a bastard
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- August 2, 2011 at 6:17 pm
Hey boots – Wishing you the best
you may have some interest in a thread I began about 5 wks ago – trying to start a conversation about side effects of B Raf / vemurafenib treatment
don't think any of the respondents were participating in combo MEK but I'm sure that is on horizon for many
search B Raf side effects, mbaelaporte
hoping Tampa / Moffit work out well for you sooner rather than later, john
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- August 2, 2011 at 6:17 pm
Hey boots – Wishing you the best
you may have some interest in a thread I began about 5 wks ago – trying to start a conversation about side effects of B Raf / vemurafenib treatment
don't think any of the respondents were participating in combo MEK but I'm sure that is on horizon for many
search B Raf side effects, mbaelaporte
hoping Tampa / Moffit work out well for you sooner rather than later, john
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- August 2, 2011 at 12:20 pm
i talked with weber and ellen his clinical nurse…i think the reason for interview is to determine if i qualify….ie ( if i am well enough)…we already discussed wash-out period and when to come see him…he has my records…and we are waiting on next scan-xiety…
i want this trial…i want it…period
the onc giving me the treatment here wants to jettison me because i am
'difficult'…what a bastard
-
- August 2, 2011 at 2:06 am
Here is what my protocol nurse says:
"Your specific trial is no longer open for the melanoma cohort. Have your friend contact Andrea at (310) 231-2150 and set up a consult with Dr. Hamid so we can see what they are eligible for."
Perhaps they can help you on the money part? Never hurts to ask.
Best wishes,
Harry
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- August 2, 2011 at 1:00 am
Harry,
I am so happy that you are doing well on Braf/Mek.
I am interested in the Braf/Mek trial at Angeles Clinic. I posted before & you were so nice to try & find out if the Braf/Mek trial at Angeles clinic was still recruiting for melanoma patients.
I called Angeles Clinic but they would not tell me. They wanted me to make an apointment for a consultation with a doctor but I cannot afford the $500. fee. I do not understand why they just could not tell me it they were still recruiting for the Braf/Mek trial.
Please let me know if you found out if Angeles Clinic is still recruiting for melanoma patients for the Brak/Mek trial.
Harry, thank you so much for you help. My email is [email protected].
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