› Forums › General Melanoma Community › 50% reduction after being on vemurabenib for 2 months
- This topic has 24 replies, 6 voices, and was last updated 13 years, 7 months ago by
shellebrownies.
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- October 2, 2011 at 4:10 pm
Hi everyone,
Looks like some good news on this board right now which is great! Seems like lots of people doing different variations of treatments.
Hi everyone,
Looks like some good news on this board right now which is great! Seems like lots of people doing different variations of treatments.
I just got my scan results from being on vemurafenib for 2 months. 50% reduction of tumors in lung, liver and bone!! I had figured as much as I almost immediately felt soo much better!!. We talked to our oncologist about switching to ipi once we got tumors either gone or small enough size that we could switch over. Original plan was wait until we saw signs that vemurafenib wasnt working anymore then switch, but now that clinical trial does not have control my husband and I are hopeful there is more freedom with the drug. My hope was that we could switch to ipi or PD-1 while I was healthiest and then if that didnt work for me go back on vemurabneib if needed.
But for now oncologist wants us to be happy with results and not rush. My cancer has become agressive and he worries about jumping off drug too soon which might give current tumors or new tumors chance to grow before ippi or pd-1 had chance to work. So for now I will be happy with my results and hopeful for the future 🙂
Any thoughts on this "plan" are welcome. Also congrats to all who are responding so well to their treatments, you are all in my prayers.
laurie from maine
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- October 2, 2011 at 7:42 pm
My experience is limited to IL-2 and Zelboraf but I will soon be 19 months on Zelboraf. My two tumors have shrunk 98% and 84% during that time. My personal plan is to continue on Zelboraf while it is still effective.
Dick-
- October 3, 2011 at 12:14 am
Hi,
That is truly amazing that it has worked so long for you. I was told by my doctor that the usual time line for it working was 8 months, so it is great to hear your news.
Am I correct that you have just found out you have prostate cancer? I hope you have caught that early, how are you doing?
take care
laurie from maine
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- October 3, 2011 at 12:14 am
Hi,
That is truly amazing that it has worked so long for you. I was told by my doctor that the usual time line for it working was 8 months, so it is great to hear your news.
Am I correct that you have just found out you have prostate cancer? I hope you have caught that early, how are you doing?
take care
laurie from maine
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- October 3, 2011 at 10:54 am
Laurie
I hope you also have the good fortune to get way past the average eight months on Zelboraf.
You are correct about the prostate cancer. (I am trying for a record; melanoma in 1998 and 2009 and three other different cancers.)
I probably would not have known about the prostate cancer had it not been for the Zelboraf testing. Both a physical exam and PSA values were normal but it lit up on the PET scan. Waiting on new scans next week to help in making a decision about treating with either radiation or surgery.
Dick
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- October 3, 2011 at 10:54 am
Laurie
I hope you also have the good fortune to get way past the average eight months on Zelboraf.
You are correct about the prostate cancer. (I am trying for a record; melanoma in 1998 and 2009 and three other different cancers.)
I probably would not have known about the prostate cancer had it not been for the Zelboraf testing. Both a physical exam and PSA values were normal but it lit up on the PET scan. Waiting on new scans next week to help in making a decision about treating with either radiation or surgery.
Dick
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- October 3, 2011 at 12:30 pm
thank you,
I am glad that the testing found the prostate cancer and hopefully early so you dont have to go thru surgery.
hmmmm not quite the record you want to win at – hopefully you can put prostate behind you soon and aim for a different "fun" record to beat!
take care – will be thinking and praying for you – let us know how your scans go next week.
laurie from maine
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- October 3, 2011 at 12:30 pm
thank you,
I am glad that the testing found the prostate cancer and hopefully early so you dont have to go thru surgery.
hmmmm not quite the record you want to win at – hopefully you can put prostate behind you soon and aim for a different "fun" record to beat!
take care – will be thinking and praying for you – let us know how your scans go next week.
laurie from maine
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- October 2, 2011 at 10:14 pm
That's wonderful news and very encouraging for others on this drug. My dad is only a few weeks and hoping he can have some similar results.
Hope you continue with great results.
Nahmi from Melbourne
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- October 2, 2011 at 10:22 pm
Hi Laurie
Just to let you know, I believe you are in excellent hands with Dr. Lawrence. I attended a symposium where I had the privilege of hearing him speak, He definitely cares about his patients. He would definitely have sound advice for you.
You can always discuss the TIL program at NIH. http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1
Blessings for being a volunteer at the therapeutic riding centre.
Many of us with Irish descent have the misfortune of melanoma….darn! Val
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- October 2, 2011 at 10:22 pm
Hi Laurie
Just to let you know, I believe you are in excellent hands with Dr. Lawrence. I attended a symposium where I had the privilege of hearing him speak, He definitely cares about his patients. He would definitely have sound advice for you.
You can always discuss the TIL program at NIH. http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1
Blessings for being a volunteer at the therapeutic riding centre.
Many of us with Irish descent have the misfortune of melanoma….darn! Val
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- October 3, 2011 at 12:38 pm
Hi Val,
THank you I agree Dr Lawrence is great and I feel in good hands with him and his team.
I confess to peeking at your profile and wondered how YOU are doing?
I am impressed with the biking you did and how much area you covered. Also your animals sound very sweet, I am sorry about the geese, how awful.
Take care – and yes the damn irish skin – thou you either love or hate those freckles ha
laurie from maine
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- October 3, 2011 at 12:38 pm
Hi Val,
THank you I agree Dr Lawrence is great and I feel in good hands with him and his team.
I confess to peeking at your profile and wondered how YOU are doing?
I am impressed with the biking you did and how much area you covered. Also your animals sound very sweet, I am sorry about the geese, how awful.
Take care – and yes the damn irish skin – thou you either love or hate those freckles ha
laurie from maine
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- October 3, 2011 at 3:19 am
Laurie,
Hey…your plan sounds identical to ours! Not exactly a shocker as we share oncologists… (wink)
I think it makes quite a bit of sense. Don hasn't had scans done yet, but I am not sure that his response is that great to the Zelboraf. We may be making the switch quicker than you (although, of course, I am hoping this is not the case).
Something that I was considering asking about is a combo Anti PD1/Yervoy trial. It is not being run at MGH at this time (to my knowledge) but I did see on clinicaltrials that both Yale and Sloan Kettering are recruiting for it. There is also a Zelboraf/Yervoy combo trial coming down the pike in the next couple months that WILL be done at MGH. I don't know if being currently on one of the drugs would disqualify you, but it would be worth asking, I'd think…
It's really too bad that MGH isn't running some kind of TIL trial. Were Don's mel not so insanely aggressive, I think that's the treatment we would be trying first. It has some really great potential…
Still, I am SO happy that you are having a great response to the meds! I hope it lasts for a long, long time. : )
Michelle, wife of Don
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- October 3, 2011 at 3:19 am
Laurie,
Hey…your plan sounds identical to ours! Not exactly a shocker as we share oncologists… (wink)
I think it makes quite a bit of sense. Don hasn't had scans done yet, but I am not sure that his response is that great to the Zelboraf. We may be making the switch quicker than you (although, of course, I am hoping this is not the case).
Something that I was considering asking about is a combo Anti PD1/Yervoy trial. It is not being run at MGH at this time (to my knowledge) but I did see on clinicaltrials that both Yale and Sloan Kettering are recruiting for it. There is also a Zelboraf/Yervoy combo trial coming down the pike in the next couple months that WILL be done at MGH. I don't know if being currently on one of the drugs would disqualify you, but it would be worth asking, I'd think…
It's really too bad that MGH isn't running some kind of TIL trial. Were Don's mel not so insanely aggressive, I think that's the treatment we would be trying first. It has some really great potential…
Still, I am SO happy that you are having a great response to the meds! I hope it lasts for a long, long time. : )
Michelle, wife of Don
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- October 3, 2011 at 5:14 pm
Hi Michelle,
Just read your profile, wow you guys have been thru a lot. I am optimistic you will find the vermurabin working well for your husband hopefully results will be similar to mine.
I am glad you found Dr Lawrence and his team. I do love the pony tail and cowboy boots, he also tries to take time and sits with you until he is sure you understand what is going on. I love Krista his nurse too.
good luck – keep us updated.
laurie from maine
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- October 3, 2011 at 5:14 pm
Hi Michelle,
Just read your profile, wow you guys have been thru a lot. I am optimistic you will find the vermurabin working well for your husband hopefully results will be similar to mine.
I am glad you found Dr Lawrence and his team. I do love the pony tail and cowboy boots, he also tries to take time and sits with you until he is sure you understand what is going on. I love Krista his nurse too.
good luck – keep us updated.
laurie from maine
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- October 4, 2011 at 11:15 am
Laurie,
I haven't been as good as I should about keeping the profile updated…I should go check and see if we are where we should be on that…
We just came from a visit yesterday, and unfortunately, Dr. Lawrence is of the opinion that either Don is only slowly responding, or a partial responder at best (which is my gut feeling as well). He pushed his scans up to this week and based on the results, we may be moving on to ipi as soon as next week.
Don has been having some other issues also (not eating enough due to lack of appetite, and something similar to restless leg syndrome has cropped up) which doesn't help matters any. Dr. L put Don on a medicine to help spur his appetite and apparently Don has thrush (which he's had when he was on the chemo…I didn't realize he could still get it) so he gave him some medicine for that. I am hoping the combo of those two will get him eating again. He's lost about 30 pounds since April; he really can't afford to lose any more. And they think that the Citalopram Don was taking for anxiety is causing the tremors/restless leg stuff, so they are discontinuing that. I am praying that is the cause of the tremors, because I do not want to think about the alternatives…
Yes, we love all of Dr. Lawrence's team, too; we don't get to see Krista all that often but she is great. I love both the nurses, too. They are fantastic about getting back to you if you have questions or concerns. They don't leave us hanging, which was one of the biggest problems we had over at Dana Farber.
So glad you are doing well. I hope that the Zelboraf continues to work for you for many, many months!
Michelle
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- October 4, 2011 at 11:15 am
Laurie,
I haven't been as good as I should about keeping the profile updated…I should go check and see if we are where we should be on that…
We just came from a visit yesterday, and unfortunately, Dr. Lawrence is of the opinion that either Don is only slowly responding, or a partial responder at best (which is my gut feeling as well). He pushed his scans up to this week and based on the results, we may be moving on to ipi as soon as next week.
Don has been having some other issues also (not eating enough due to lack of appetite, and something similar to restless leg syndrome has cropped up) which doesn't help matters any. Dr. L put Don on a medicine to help spur his appetite and apparently Don has thrush (which he's had when he was on the chemo…I didn't realize he could still get it) so he gave him some medicine for that. I am hoping the combo of those two will get him eating again. He's lost about 30 pounds since April; he really can't afford to lose any more. And they think that the Citalopram Don was taking for anxiety is causing the tremors/restless leg stuff, so they are discontinuing that. I am praying that is the cause of the tremors, because I do not want to think about the alternatives…
Yes, we love all of Dr. Lawrence's team, too; we don't get to see Krista all that often but she is great. I love both the nurses, too. They are fantastic about getting back to you if you have questions or concerns. They don't leave us hanging, which was one of the biggest problems we had over at Dana Farber.
So glad you are doing well. I hope that the Zelboraf continues to work for you for many, many months!
Michelle
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- October 3, 2011 at 11:51 pm
Laurie,
Good news is definitely a welcomed event here…congratulations on the success with your treatment! I hope you have continued success with it, and I am so happy to hear that you have confidence in your doctor. It really makes all the difference! Keep the momentum going!
Tricia
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- October 3, 2011 at 11:51 pm
Laurie,
Good news is definitely a welcomed event here…congratulations on the success with your treatment! I hope you have continued success with it, and I am so happy to hear that you have confidence in your doctor. It really makes all the difference! Keep the momentum going!
Tricia
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