› Forums › General Melanoma Community › What about stopping Zelboraf when NED? Pondering possibilities…what do you think??
- This topic has 60 replies, 6 voices, and was last updated 12 years, 10 months ago by
Tina D.
- Post
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- November 2, 2012 at 2:13 pm
My husband and I have been thinking a lot lately about choices we will face next month when I get scans again. My first set of scans showed complete resolution off every tumor ( we are continually thanking the Lord for that). I know that Z seems to cause a resistance that tumor cells can develop after time. My question is this. If the next scans are clear, wouldn't it seem to make sense to discontinue the Zelboraf and continue with frequent scans to monitor? If the cells are not constantly bombarded with Zelboraf, it seems they would be less likely to develop resistance to it.
My husband and I have been thinking a lot lately about choices we will face next month when I get scans again. My first set of scans showed complete resolution off every tumor ( we are continually thanking the Lord for that). I know that Z seems to cause a resistance that tumor cells can develop after time. My question is this. If the next scans are clear, wouldn't it seem to make sense to discontinue the Zelboraf and continue with frequent scans to monitor? If the cells are not constantly bombarded with Zelboraf, it seems they would be less likely to develop resistance to it. I know I am not as smart as the Drs ( not even close) but I also recognize that there are a lot of unknowns yet with zelboraf. I told my husband that the group of patients on this board have to be the most well informed group of cancer patients anywhere, and you have experience from institutions and Drs far and wide. I feel as if you are a tremendous resource of information, ideas and support. Has anyone broached this question with their Dr, or heard any evidence one way or the other? What are your thoughts? I have only been on here since May, but have grown to highly value your input and opinions.
Thank you,
Tina
- Replies
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- November 2, 2012 at 4:17 pm
Tina,For me, going off Zel to do Ipi has been a disaster. At the time i stopped Zel my brain was all clear and the tumor in my heart was tiny – not even visible on PET. The rest of me all clear.
My last day on Zel was 9/28. I had Ipi 10/1. I started having weird pain at my temples almost immediately. Round 2 Ipi Oct 22. Oct 25 brain MRI shows my original brain lesion, found at 4 mm, then resolved by Zel, is back now at 6 mm. New brain lesion, 4mm. Thickening of the leptomenengial covering of the brain, suspicious for Mel. A lumbar puncture to check spinal fluid for mel and WBR has been mentioned. Don’t think we are doing that right now.
Bp and heart rate is all over, plus irregular heart beat, and am on a cardiac monitor for the weekend. Could be the tumor, could be related to my thyroid which is malfunctioning from the Ipi.
Having SRS 11/8 for the two brain mets then will continue Ipi. I refuse to “what if” I hadn’t gone down this path. Even my doc was shocked at the brain mets but I don’t regret the plan we chose. He has yrs of experience with both Zel & Ipi and we did the best thing we thought possible.
There is no making sense of Mel. Please say a prayer for me.
Amy
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- November 2, 2012 at 4:17 pm
Tina,For me, going off Zel to do Ipi has been a disaster. At the time i stopped Zel my brain was all clear and the tumor in my heart was tiny – not even visible on PET. The rest of me all clear.
My last day on Zel was 9/28. I had Ipi 10/1. I started having weird pain at my temples almost immediately. Round 2 Ipi Oct 22. Oct 25 brain MRI shows my original brain lesion, found at 4 mm, then resolved by Zel, is back now at 6 mm. New brain lesion, 4mm. Thickening of the leptomenengial covering of the brain, suspicious for Mel. A lumbar puncture to check spinal fluid for mel and WBR has been mentioned. Don’t think we are doing that right now.
Bp and heart rate is all over, plus irregular heart beat, and am on a cardiac monitor for the weekend. Could be the tumor, could be related to my thyroid which is malfunctioning from the Ipi.
Having SRS 11/8 for the two brain mets then will continue Ipi. I refuse to “what if” I hadn’t gone down this path. Even my doc was shocked at the brain mets but I don’t regret the plan we chose. He has yrs of experience with both Zel & Ipi and we did the best thing we thought possible.
There is no making sense of Mel. Please say a prayer for me.
Amy
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- November 2, 2012 at 5:01 pm
Amy,
I agree that there is no "what if" … Mel is unpredictable at best. I cannot tell you how very sorry I am that things have so rapidly changed for you. I hate this. You have been on my mind lots and I am sure praying for you. Keep us posted as you can .. each update is a reminder to me to keep you in prayer. It sounds like you have a wonderful Dr and are in good hands there. Oh, how I wish you were not facing what you currently are. Hang in there one step at a time & remember that there are a number of folks on here who have been there and back and continue to encourage the rest of us! Wish I had the perfect words to express my thoughts… just know you are being prayed for.
Thank you for taking the time to share even now when things are so hard.
Tina
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- November 2, 2012 at 5:01 pm
Amy,
I agree that there is no "what if" … Mel is unpredictable at best. I cannot tell you how very sorry I am that things have so rapidly changed for you. I hate this. You have been on my mind lots and I am sure praying for you. Keep us posted as you can .. each update is a reminder to me to keep you in prayer. It sounds like you have a wonderful Dr and are in good hands there. Oh, how I wish you were not facing what you currently are. Hang in there one step at a time & remember that there are a number of folks on here who have been there and back and continue to encourage the rest of us! Wish I had the perfect words to express my thoughts… just know you are being prayed for.
Thank you for taking the time to share even now when things are so hard.
Tina
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- November 2, 2012 at 5:01 pm
Amy,
I agree that there is no "what if" … Mel is unpredictable at best. I cannot tell you how very sorry I am that things have so rapidly changed for you. I hate this. You have been on my mind lots and I am sure praying for you. Keep us posted as you can .. each update is a reminder to me to keep you in prayer. It sounds like you have a wonderful Dr and are in good hands there. Oh, how I wish you were not facing what you currently are. Hang in there one step at a time & remember that there are a number of folks on here who have been there and back and continue to encourage the rest of us! Wish I had the perfect words to express my thoughts… just know you are being prayed for.
Thank you for taking the time to share even now when things are so hard.
Tina
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- November 2, 2012 at 10:07 pm
Thanks Tina for your concern, not on here much – too depressing. How are your eyes? Look for a post by snickers60. I think her hubs was NED on Zel and they were talking about switching to a trial at MD Anderson using anti PD1 after Zel if you are NED.They are thinking now heart problems might be related to thyroid and not tumor. Hoping so 🙂
All the best,
Amy -
- November 2, 2012 at 10:07 pm
Thanks Tina for your concern, not on here much – too depressing. How are your eyes? Look for a post by snickers60. I think her hubs was NED on Zel and they were talking about switching to a trial at MD Anderson using anti PD1 after Zel if you are NED.They are thinking now heart problems might be related to thyroid and not tumor. Hoping so 🙂
All the best,
Amy -
- November 2, 2012 at 10:07 pm
Thanks Tina for your concern, not on here much – too depressing. How are your eyes? Look for a post by snickers60. I think her hubs was NED on Zel and they were talking about switching to a trial at MD Anderson using anti PD1 after Zel if you are NED.They are thinking now heart problems might be related to thyroid and not tumor. Hoping so 🙂
All the best,
Amy -
- November 2, 2012 at 11:31 pm
Yes, there was a period of time before my last scans that I just felt I had to stay off here, as well, even these days I go in cycles… we have to know what balance is helpful, I suppose.
My eyes are not bothering me nearly as much as they were, thank you for asking – are your eye issues any better. That IPI has just been brutal to you from the sounds of it.
I think remember talking with Snickers … (her husband is Wayne?). I was wondering abt them the other day. I havent seen anything on here in a good while from her.I will try to search them up…
I am glad to think some of the new issues may be realted to heart, and NOT tumor. Very difficult days for you, to understate it, I am sure.
Hang in there, friend.
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- November 2, 2012 at 11:31 pm
Yes, there was a period of time before my last scans that I just felt I had to stay off here, as well, even these days I go in cycles… we have to know what balance is helpful, I suppose.
My eyes are not bothering me nearly as much as they were, thank you for asking – are your eye issues any better. That IPI has just been brutal to you from the sounds of it.
I think remember talking with Snickers … (her husband is Wayne?). I was wondering abt them the other day. I havent seen anything on here in a good while from her.I will try to search them up…
I am glad to think some of the new issues may be realted to heart, and NOT tumor. Very difficult days for you, to understate it, I am sure.
Hang in there, friend.
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- November 2, 2012 at 11:31 pm
Yes, there was a period of time before my last scans that I just felt I had to stay off here, as well, even these days I go in cycles… we have to know what balance is helpful, I suppose.
My eyes are not bothering me nearly as much as they were, thank you for asking – are your eye issues any better. That IPI has just been brutal to you from the sounds of it.
I think remember talking with Snickers … (her husband is Wayne?). I was wondering abt them the other day. I havent seen anything on here in a good while from her.I will try to search them up…
I am glad to think some of the new issues may be realted to heart, and NOT tumor. Very difficult days for you, to understate it, I am sure.
Hang in there, friend.
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- November 3, 2012 at 12:01 am
My eyes are great. Tapering off steroid drops for rt eye w iritis. Stuck with my glasses though that I hadn’t worn in years. I am only 20/25 again though so whatever damage the Zel did wasn’t too bad.I went through what you’re thinking a 1000 times. I told my doc the psychological issues w Zel are very hard to live with. That is just not the oncologists job but should be somebody’s! It’s like living with a time bomb. I had some severe depression on it. Plus the side effects. My chart actually lists me as allergic to it.
I Can’t complain about any of it, I cannot understand His plan, only try to seek Him and live each day to its fullest. Now hoping for that abscopal effect. I’m like my own little clinical trial.
If you want you can follow me at http://nashvegasmom.wordpress.com/
Take care.
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- November 3, 2012 at 12:01 am
My eyes are great. Tapering off steroid drops for rt eye w iritis. Stuck with my glasses though that I hadn’t worn in years. I am only 20/25 again though so whatever damage the Zel did wasn’t too bad.I went through what you’re thinking a 1000 times. I told my doc the psychological issues w Zel are very hard to live with. That is just not the oncologists job but should be somebody’s! It’s like living with a time bomb. I had some severe depression on it. Plus the side effects. My chart actually lists me as allergic to it.
I Can’t complain about any of it, I cannot understand His plan, only try to seek Him and live each day to its fullest. Now hoping for that abscopal effect. I’m like my own little clinical trial.
If you want you can follow me at http://nashvegasmom.wordpress.com/
Take care.
-
- November 3, 2012 at 12:01 am
My eyes are great. Tapering off steroid drops for rt eye w iritis. Stuck with my glasses though that I hadn’t worn in years. I am only 20/25 again though so whatever damage the Zel did wasn’t too bad.I went through what you’re thinking a 1000 times. I told my doc the psychological issues w Zel are very hard to live with. That is just not the oncologists job but should be somebody’s! It’s like living with a time bomb. I had some severe depression on it. Plus the side effects. My chart actually lists me as allergic to it.
I Can’t complain about any of it, I cannot understand His plan, only try to seek Him and live each day to its fullest. Now hoping for that abscopal effect. I’m like my own little clinical trial.
If you want you can follow me at http://nashvegasmom.wordpress.com/
Take care.
-
- November 2, 2012 at 4:17 pm
Tina,For me, going off Zel to do Ipi has been a disaster. At the time i stopped Zel my brain was all clear and the tumor in my heart was tiny – not even visible on PET. The rest of me all clear.
My last day on Zel was 9/28. I had Ipi 10/1. I started having weird pain at my temples almost immediately. Round 2 Ipi Oct 22. Oct 25 brain MRI shows my original brain lesion, found at 4 mm, then resolved by Zel, is back now at 6 mm. New brain lesion, 4mm. Thickening of the leptomenengial covering of the brain, suspicious for Mel. A lumbar puncture to check spinal fluid for mel and WBR has been mentioned. Don’t think we are doing that right now.
Bp and heart rate is all over, plus irregular heart beat, and am on a cardiac monitor for the weekend. Could be the tumor, could be related to my thyroid which is malfunctioning from the Ipi.
Having SRS 11/8 for the two brain mets then will continue Ipi. I refuse to “what if” I hadn’t gone down this path. Even my doc was shocked at the brain mets but I don’t regret the plan we chose. He has yrs of experience with both Zel & Ipi and we did the best thing we thought possible.
There is no making sense of Mel. Please say a prayer for me.
Amy
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- November 2, 2012 at 4:37 pm
Hi, Tina-
I like the way you think. One would expect that if continuous exposure to Z leads to resistance, maybe we should take a break from Z and try something else for a while. Especially if you are NED. That's what Amy and her doctor were thinking, and it makes sense to me. Unfortunately, that approach didn't work for Amy (and thank you, Amy, for sharing that important information with us). But who knows if other people will have the same experience as Amy did?
On the other hand, if we take antibiotics as an example, some bacteria will develop resistance to any antibiotic. If you take the antibiotic for the full 10 days, the antibiotic PLUS your immune system can kill all of the bacteria. But if you stop taking the antibiotic after 3 or 4 days, the few resistant bacteria proliferate and the next time you try that antibiotic, it does no good. It's too late– there is now a population of resistant bacteria that the drug can't kill. You will have to switch to some different antibiotic. So do you now have some resistant melanoma cells in your body? If you stop taking Zelboraf now and start it again later, will it still work? Nobody knows.
Logically, it would make sense to stimulate your immune system–perhaps with ipi– at the same time you are taking Zelboraf. But there may be some medical reason NOT to mix them. I'm not a doctor, so I don't know. Obviously, I have no actual advice to give you. But you are asking a good question. Please keep us posted about your decision.
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- November 2, 2012 at 4:37 pm
Hi, Tina-
I like the way you think. One would expect that if continuous exposure to Z leads to resistance, maybe we should take a break from Z and try something else for a while. Especially if you are NED. That's what Amy and her doctor were thinking, and it makes sense to me. Unfortunately, that approach didn't work for Amy (and thank you, Amy, for sharing that important information with us). But who knows if other people will have the same experience as Amy did?
On the other hand, if we take antibiotics as an example, some bacteria will develop resistance to any antibiotic. If you take the antibiotic for the full 10 days, the antibiotic PLUS your immune system can kill all of the bacteria. But if you stop taking the antibiotic after 3 or 4 days, the few resistant bacteria proliferate and the next time you try that antibiotic, it does no good. It's too late– there is now a population of resistant bacteria that the drug can't kill. You will have to switch to some different antibiotic. So do you now have some resistant melanoma cells in your body? If you stop taking Zelboraf now and start it again later, will it still work? Nobody knows.
Logically, it would make sense to stimulate your immune system–perhaps with ipi– at the same time you are taking Zelboraf. But there may be some medical reason NOT to mix them. I'm not a doctor, so I don't know. Obviously, I have no actual advice to give you. But you are asking a good question. Please keep us posted about your decision.
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- November 2, 2012 at 6:21 pm
I know, I hate what Amy is now going throuigh. And this beast of a disease is so unpredictable. I am just starting down this road of inquiry and I look forward to seeing what I can find out. Thanks so much for sharing your thoughts on it, too. I have had to take a couple lengthy breaks from the Z … once due to side effects on full-dose, I was off for a couple weeks… that was before my first scans which showed me to be NED. The second long break was over 3 weeks when I ended up having my gallbladder out. Whether this break had ill- effect or not, I couldn't say for sure, next scans are in December, though I did have a brain CT scan done this past week due to some eye symptoms and that scan was clear
( did not have brain mets to begin with). -
- November 2, 2012 at 6:21 pm
I know, I hate what Amy is now going throuigh. And this beast of a disease is so unpredictable. I am just starting down this road of inquiry and I look forward to seeing what I can find out. Thanks so much for sharing your thoughts on it, too. I have had to take a couple lengthy breaks from the Z … once due to side effects on full-dose, I was off for a couple weeks… that was before my first scans which showed me to be NED. The second long break was over 3 weeks when I ended up having my gallbladder out. Whether this break had ill- effect or not, I couldn't say for sure, next scans are in December, though I did have a brain CT scan done this past week due to some eye symptoms and that scan was clear
( did not have brain mets to begin with). -
- November 2, 2012 at 6:21 pm
I know, I hate what Amy is now going throuigh. And this beast of a disease is so unpredictable. I am just starting down this road of inquiry and I look forward to seeing what I can find out. Thanks so much for sharing your thoughts on it, too. I have had to take a couple lengthy breaks from the Z … once due to side effects on full-dose, I was off for a couple weeks… that was before my first scans which showed me to be NED. The second long break was over 3 weeks when I ended up having my gallbladder out. Whether this break had ill- effect or not, I couldn't say for sure, next scans are in December, though I did have a brain CT scan done this past week due to some eye symptoms and that scan was clear
( did not have brain mets to begin with).
-
- November 2, 2012 at 4:37 pm
Hi, Tina-
I like the way you think. One would expect that if continuous exposure to Z leads to resistance, maybe we should take a break from Z and try something else for a while. Especially if you are NED. That's what Amy and her doctor were thinking, and it makes sense to me. Unfortunately, that approach didn't work for Amy (and thank you, Amy, for sharing that important information with us). But who knows if other people will have the same experience as Amy did?
On the other hand, if we take antibiotics as an example, some bacteria will develop resistance to any antibiotic. If you take the antibiotic for the full 10 days, the antibiotic PLUS your immune system can kill all of the bacteria. But if you stop taking the antibiotic after 3 or 4 days, the few resistant bacteria proliferate and the next time you try that antibiotic, it does no good. It's too late– there is now a population of resistant bacteria that the drug can't kill. You will have to switch to some different antibiotic. So do you now have some resistant melanoma cells in your body? If you stop taking Zelboraf now and start it again later, will it still work? Nobody knows.
Logically, it would make sense to stimulate your immune system–perhaps with ipi– at the same time you are taking Zelboraf. But there may be some medical reason NOT to mix them. I'm not a doctor, so I don't know. Obviously, I have no actual advice to give you. But you are asking a good question. Please keep us posted about your decision.
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- November 3, 2012 at 7:31 pm
Hello Tina,
My husband was not on Z but he was on Ippi and still is. Currently he is in the maintenance phase and that is part of the clinical trial (meaning he gets Ippi every 12 weeks after the initial 12 weeks). He is now NED but the Dr. says if he goes off of the Ippi he cannot get back to the strength he is now on (10 mg/kg) He can only get the approved amount of 3 mg/kg and we would have to pay for it. In his clinical trial he also gets GM-CSF shots for 14 days then 7 days off and he would not be able to get this at all. So looks like he stays on the drugs until melanoma returns then he will have to switch to something else or hopefully another clinical trial.
This doesn't necessarily help you but it might be what your Dr. recommends for now.
Gene just had blood clots show in his lungs on his last scans and spent 11 days in the hospital for them. We were told that people that have cancer or had cancer are more susceptible to blood clots. While he had no symptoms and we are thankful that on his regular 12 week scans they showed in the CT scan. So any different complaints or changes please check with your Dr. quickly all of you fellow warriors because his could have been fatal.
Judy (loving wife to Gene Stage IV and now NED)
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- November 3, 2012 at 7:31 pm
Hello Tina,
My husband was not on Z but he was on Ippi and still is. Currently he is in the maintenance phase and that is part of the clinical trial (meaning he gets Ippi every 12 weeks after the initial 12 weeks). He is now NED but the Dr. says if he goes off of the Ippi he cannot get back to the strength he is now on (10 mg/kg) He can only get the approved amount of 3 mg/kg and we would have to pay for it. In his clinical trial he also gets GM-CSF shots for 14 days then 7 days off and he would not be able to get this at all. So looks like he stays on the drugs until melanoma returns then he will have to switch to something else or hopefully another clinical trial.
This doesn't necessarily help you but it might be what your Dr. recommends for now.
Gene just had blood clots show in his lungs on his last scans and spent 11 days in the hospital for them. We were told that people that have cancer or had cancer are more susceptible to blood clots. While he had no symptoms and we are thankful that on his regular 12 week scans they showed in the CT scan. So any different complaints or changes please check with your Dr. quickly all of you fellow warriors because his could have been fatal.
Judy (loving wife to Gene Stage IV and now NED)
-
- November 3, 2012 at 7:31 pm
Hello Tina,
My husband was not on Z but he was on Ippi and still is. Currently he is in the maintenance phase and that is part of the clinical trial (meaning he gets Ippi every 12 weeks after the initial 12 weeks). He is now NED but the Dr. says if he goes off of the Ippi he cannot get back to the strength he is now on (10 mg/kg) He can only get the approved amount of 3 mg/kg and we would have to pay for it. In his clinical trial he also gets GM-CSF shots for 14 days then 7 days off and he would not be able to get this at all. So looks like he stays on the drugs until melanoma returns then he will have to switch to something else or hopefully another clinical trial.
This doesn't necessarily help you but it might be what your Dr. recommends for now.
Gene just had blood clots show in his lungs on his last scans and spent 11 days in the hospital for them. We were told that people that have cancer or had cancer are more susceptible to blood clots. While he had no symptoms and we are thankful that on his regular 12 week scans they showed in the CT scan. So any different complaints or changes please check with your Dr. quickly all of you fellow warriors because his could have been fatal.
Judy (loving wife to Gene Stage IV and now NED)
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- November 4, 2012 at 1:14 am
Hi Tina, I have been thinking about Z lately as I was on it very sucessfully prior to surgery (just got my 6 month all clear). I am seeing my oncologist in a couple of days and was going to ask him some questions regarding Z.
It seems from all the reading I have done that Z seems to continue working well for many people if you are taking it on and off, eg one week on one week off. I wondered if that could prolong the resistance but also offer tumour control. Nobody seems to have all the exact answers on Z but it does appear a lot of patients have accelerated tumour growth once the tumour has become resistant. If this on again off again approach mantains your current tumours, you might vastly increase the reisistance time frame. Might be something to talk to your oncologist about anyway, if my oncologist can shed any light on this thought I will let you know. Keep on keeping on!
Stephanie
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- November 5, 2012 at 10:38 pm
Hey ya'll – SNICKERS 60 here – Hubby of WARRIOR WAYNE !
I was going to do an update tomorrow, but since Wayne saw this post, I will go ahead now.
We just returned from MDA on Sat. night. Had PET – it was CLEAN AGAIN except for a Questionable spot on his right leg just above his knee and to the outside. It is small. They did a biopsy and we are waiting for the results now. We came on home, but will have to go right back for surgery if it's MELLY !
Wayne found the MELLY when he had a heart scan done in March for heart plaque because of family history. So, we're back to that. He did have some problems with his stress test and they put him on beta blockers and set up Cath/possible stents for Wednesday the 7th. Problem now is that Cardio does not want to do Cath before SURGERY. He wants to get that out of the way before they do it, so it prompted Dr. B to go on and do the biopsy of the leg spot out of the way.
Once they remove that spot, IF it is indeed MELLY – he will be OFFICIALLY CANCER FREE ! Dr. B says it's the best response he's ever seen at MDA. AMEN !!!!!!!!!!!!!!!!!!
So, what will they do then is the question ? Continue ZEL – take the Anti PD1 – WE DO NOT KNOW !!! I'm sorry, we've just had so much on our plate that we have not gotten that far with WHAT NEXT once we know it is truly ALL GONE ! They are not sure this is MEL in his leg, but needed to find out. They had watched it for a while and it did not go away, and activity on PET kinda stayed the same. Could be something like matted nerves. It's small and in the sub-cutaneous fatty tissue of the leg, but now we need to know because of cath/stents procedure.
Dr. B has talked about the Anti PD1 after, or with Zel, once he is declared CANCER FREE for a while, but we have not gotten back to that point yet.
I have to have sugery with a torn meniscus in my knee and we're trying to sell home/find one, move on top of these 3 surgeries and I'm in extremely poor health, so I have not been on much lately. FULL PLATE !
We will learn results of leg biopsy tomorrow and move on towards sugery to remove that and get his heart Cath/Stents and THEN figure it all out, so I'm sorry I'm not much help. After reading your post, Tina, I think I would be very ANTSY to STOP Zel at this point. This stuff is just so iffy, and so unpredictable and each person is so different, you just do not know what is going to happen. He skipped his dose this morning of ZEL because if they can go ahead with the Cath on Wednesday with a clean biopsy from MDA, he has to be off ZEL for 3 days for it. He said he could not believe how much better he felt after missing just one dose. Dr. B. said he would take him off it for 4 days before and 4 days after ANY SURGERY HE MIGHT HAVE – just because the do not know what it will do with anthesia etc. So, he's really looking forward to that VACA from Zel for 8 days.
I'm sooooo very sorry you have had this experience. I wish I could tell you more, I wish I had some answers for you, but think it will be a couple of months before they decide what to do with Wayne once this spot on leg is determined and his heart cath is over.
LOTS OF QUESTION MARKS and NOT MANY ANSWERS FOR YOU I'M AFRAID ! Sure wish I could be more help and will update more often – I promise.
GOD'S VERY BEST BLESSINGS TO YOU and I'll be keeping up with you too, and saying a prayer for you. HANG IN THERE………new stuff all the time is coming out. Keep your chin up……..I know it's hard. VERY HARD……and know you are cared about.
Nancy (Devoted Wife of 3 time Warrior Wayne)
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- November 5, 2012 at 10:38 pm
Hey ya'll – SNICKERS 60 here – Hubby of WARRIOR WAYNE !
I was going to do an update tomorrow, but since Wayne saw this post, I will go ahead now.
We just returned from MDA on Sat. night. Had PET – it was CLEAN AGAIN except for a Questionable spot on his right leg just above his knee and to the outside. It is small. They did a biopsy and we are waiting for the results now. We came on home, but will have to go right back for surgery if it's MELLY !
Wayne found the MELLY when he had a heart scan done in March for heart plaque because of family history. So, we're back to that. He did have some problems with his stress test and they put him on beta blockers and set up Cath/possible stents for Wednesday the 7th. Problem now is that Cardio does not want to do Cath before SURGERY. He wants to get that out of the way before they do it, so it prompted Dr. B to go on and do the biopsy of the leg spot out of the way.
Once they remove that spot, IF it is indeed MELLY – he will be OFFICIALLY CANCER FREE ! Dr. B says it's the best response he's ever seen at MDA. AMEN !!!!!!!!!!!!!!!!!!
So, what will they do then is the question ? Continue ZEL – take the Anti PD1 – WE DO NOT KNOW !!! I'm sorry, we've just had so much on our plate that we have not gotten that far with WHAT NEXT once we know it is truly ALL GONE ! They are not sure this is MEL in his leg, but needed to find out. They had watched it for a while and it did not go away, and activity on PET kinda stayed the same. Could be something like matted nerves. It's small and in the sub-cutaneous fatty tissue of the leg, but now we need to know because of cath/stents procedure.
Dr. B has talked about the Anti PD1 after, or with Zel, once he is declared CANCER FREE for a while, but we have not gotten back to that point yet.
I have to have sugery with a torn meniscus in my knee and we're trying to sell home/find one, move on top of these 3 surgeries and I'm in extremely poor health, so I have not been on much lately. FULL PLATE !
We will learn results of leg biopsy tomorrow and move on towards sugery to remove that and get his heart Cath/Stents and THEN figure it all out, so I'm sorry I'm not much help. After reading your post, Tina, I think I would be very ANTSY to STOP Zel at this point. This stuff is just so iffy, and so unpredictable and each person is so different, you just do not know what is going to happen. He skipped his dose this morning of ZEL because if they can go ahead with the Cath on Wednesday with a clean biopsy from MDA, he has to be off ZEL for 3 days for it. He said he could not believe how much better he felt after missing just one dose. Dr. B. said he would take him off it for 4 days before and 4 days after ANY SURGERY HE MIGHT HAVE – just because the do not know what it will do with anthesia etc. So, he's really looking forward to that VACA from Zel for 8 days.
I'm sooooo very sorry you have had this experience. I wish I could tell you more, I wish I had some answers for you, but think it will be a couple of months before they decide what to do with Wayne once this spot on leg is determined and his heart cath is over.
LOTS OF QUESTION MARKS and NOT MANY ANSWERS FOR YOU I'M AFRAID ! Sure wish I could be more help and will update more often – I promise.
GOD'S VERY BEST BLESSINGS TO YOU and I'll be keeping up with you too, and saying a prayer for you. HANG IN THERE………new stuff all the time is coming out. Keep your chin up……..I know it's hard. VERY HARD……and know you are cared about.
Nancy (Devoted Wife of 3 time Warrior Wayne)
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- November 5, 2012 at 10:38 pm
Hey ya'll – SNICKERS 60 here – Hubby of WARRIOR WAYNE !
I was going to do an update tomorrow, but since Wayne saw this post, I will go ahead now.
We just returned from MDA on Sat. night. Had PET – it was CLEAN AGAIN except for a Questionable spot on his right leg just above his knee and to the outside. It is small. They did a biopsy and we are waiting for the results now. We came on home, but will have to go right back for surgery if it's MELLY !
Wayne found the MELLY when he had a heart scan done in March for heart plaque because of family history. So, we're back to that. He did have some problems with his stress test and they put him on beta blockers and set up Cath/possible stents for Wednesday the 7th. Problem now is that Cardio does not want to do Cath before SURGERY. He wants to get that out of the way before they do it, so it prompted Dr. B to go on and do the biopsy of the leg spot out of the way.
Once they remove that spot, IF it is indeed MELLY – he will be OFFICIALLY CANCER FREE ! Dr. B says it's the best response he's ever seen at MDA. AMEN !!!!!!!!!!!!!!!!!!
So, what will they do then is the question ? Continue ZEL – take the Anti PD1 – WE DO NOT KNOW !!! I'm sorry, we've just had so much on our plate that we have not gotten that far with WHAT NEXT once we know it is truly ALL GONE ! They are not sure this is MEL in his leg, but needed to find out. They had watched it for a while and it did not go away, and activity on PET kinda stayed the same. Could be something like matted nerves. It's small and in the sub-cutaneous fatty tissue of the leg, but now we need to know because of cath/stents procedure.
Dr. B has talked about the Anti PD1 after, or with Zel, once he is declared CANCER FREE for a while, but we have not gotten back to that point yet.
I have to have sugery with a torn meniscus in my knee and we're trying to sell home/find one, move on top of these 3 surgeries and I'm in extremely poor health, so I have not been on much lately. FULL PLATE !
We will learn results of leg biopsy tomorrow and move on towards sugery to remove that and get his heart Cath/Stents and THEN figure it all out, so I'm sorry I'm not much help. After reading your post, Tina, I think I would be very ANTSY to STOP Zel at this point. This stuff is just so iffy, and so unpredictable and each person is so different, you just do not know what is going to happen. He skipped his dose this morning of ZEL because if they can go ahead with the Cath on Wednesday with a clean biopsy from MDA, he has to be off ZEL for 3 days for it. He said he could not believe how much better he felt after missing just one dose. Dr. B. said he would take him off it for 4 days before and 4 days after ANY SURGERY HE MIGHT HAVE – just because the do not know what it will do with anthesia etc. So, he's really looking forward to that VACA from Zel for 8 days.
I'm sooooo very sorry you have had this experience. I wish I could tell you more, I wish I had some answers for you, but think it will be a couple of months before they decide what to do with Wayne once this spot on leg is determined and his heart cath is over.
LOTS OF QUESTION MARKS and NOT MANY ANSWERS FOR YOU I'M AFRAID ! Sure wish I could be more help and will update more often – I promise.
GOD'S VERY BEST BLESSINGS TO YOU and I'll be keeping up with you too, and saying a prayer for you. HANG IN THERE………new stuff all the time is coming out. Keep your chin up……..I know it's hard. VERY HARD……and know you are cared about.
Nancy (Devoted Wife of 3 time Warrior Wayne)
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- November 9, 2012 at 2:04 pm
Thanks so much, everyone, for aking the time to reply & for all the help. I am thinking that if the scans are still clear in December, it may be time to head out to one of the larger facilities like MD Anderson, or Moffit. I will prob open a new post for suggestions on where to go, if we decide to go that route.
Nancy..it has been SO great to hear of Wayne's good biopsy report! Now, you will be able to address the other things you've been puting off. Great great news! You can know we are rejoicing with you guys!!
Amy.. watching your updates, and our kids are praying for you, too.
Tina D
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- November 9, 2012 at 2:48 pm
TINA – if you decide on MDA in Houston – I can give you many tips if you would like. Like FREE TRANSPORTATION from Airports/bus stations etc. Where to stay, and a few important things we have learned that makes the trip a little eaiser.
BLESSINGS TO YOU AND WILL BE WATCHING FOR YOUR UPDATES and DECISION !
-
- November 13, 2012 at 2:27 pm
Thank you!! We are in SW Indiana, so I think anywhere we go will be a big trip for us. I have lymphedema in my leg, so not sure that flying would be an option. We are leaning towards MD Anderson because I have heard them mentioned so many times on this board. How long did it take you to get an appt there? Did your oncologist have to schedule it? I appreciate your offer of helpful advice, and will no doubt be getting back with you if this is where we decide to go. I am opening another post to ask advice abt this. MD Anderson and Moffit are the 2 places I have heard mentioned the most, though I am sure there are many places to choose from. Such a big decision! How did you decide where to go? Was it far for you to travel? It also wouldn't be feasible for us to go down there often, so I dont know if it is wise or not….
Too many decisions!!
Tina
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- November 13, 2012 at 2:27 pm
Thank you!! We are in SW Indiana, so I think anywhere we go will be a big trip for us. I have lymphedema in my leg, so not sure that flying would be an option. We are leaning towards MD Anderson because I have heard them mentioned so many times on this board. How long did it take you to get an appt there? Did your oncologist have to schedule it? I appreciate your offer of helpful advice, and will no doubt be getting back with you if this is where we decide to go. I am opening another post to ask advice abt this. MD Anderson and Moffit are the 2 places I have heard mentioned the most, though I am sure there are many places to choose from. Such a big decision! How did you decide where to go? Was it far for you to travel? It also wouldn't be feasible for us to go down there often, so I dont know if it is wise or not….
Too many decisions!!
Tina
-
- November 13, 2012 at 2:27 pm
Thank you!! We are in SW Indiana, so I think anywhere we go will be a big trip for us. I have lymphedema in my leg, so not sure that flying would be an option. We are leaning towards MD Anderson because I have heard them mentioned so many times on this board. How long did it take you to get an appt there? Did your oncologist have to schedule it? I appreciate your offer of helpful advice, and will no doubt be getting back with you if this is where we decide to go. I am opening another post to ask advice abt this. MD Anderson and Moffit are the 2 places I have heard mentioned the most, though I am sure there are many places to choose from. Such a big decision! How did you decide where to go? Was it far for you to travel? It also wouldn't be feasible for us to go down there often, so I dont know if it is wise or not….
Too many decisions!!
Tina
-
- November 9, 2012 at 2:48 pm
TINA – if you decide on MDA in Houston – I can give you many tips if you would like. Like FREE TRANSPORTATION from Airports/bus stations etc. Where to stay, and a few important things we have learned that makes the trip a little eaiser.
BLESSINGS TO YOU AND WILL BE WATCHING FOR YOUR UPDATES and DECISION !
-
- November 9, 2012 at 2:48 pm
TINA – if you decide on MDA in Houston – I can give you many tips if you would like. Like FREE TRANSPORTATION from Airports/bus stations etc. Where to stay, and a few important things we have learned that makes the trip a little eaiser.
BLESSINGS TO YOU AND WILL BE WATCHING FOR YOUR UPDATES and DECISION !
-
- November 9, 2012 at 2:04 pm
Thanks so much, everyone, for aking the time to reply & for all the help. I am thinking that if the scans are still clear in December, it may be time to head out to one of the larger facilities like MD Anderson, or Moffit. I will prob open a new post for suggestions on where to go, if we decide to go that route.
Nancy..it has been SO great to hear of Wayne's good biopsy report! Now, you will be able to address the other things you've been puting off. Great great news! You can know we are rejoicing with you guys!!
Amy.. watching your updates, and our kids are praying for you, too.
Tina D
-
- November 9, 2012 at 2:04 pm
Thanks so much, everyone, for aking the time to reply & for all the help. I am thinking that if the scans are still clear in December, it may be time to head out to one of the larger facilities like MD Anderson, or Moffit. I will prob open a new post for suggestions on where to go, if we decide to go that route.
Nancy..it has been SO great to hear of Wayne's good biopsy report! Now, you will be able to address the other things you've been puting off. Great great news! You can know we are rejoicing with you guys!!
Amy.. watching your updates, and our kids are praying for you, too.
Tina D
-
- November 4, 2012 at 1:14 am
Hi Tina, I have been thinking about Z lately as I was on it very sucessfully prior to surgery (just got my 6 month all clear). I am seeing my oncologist in a couple of days and was going to ask him some questions regarding Z.
It seems from all the reading I have done that Z seems to continue working well for many people if you are taking it on and off, eg one week on one week off. I wondered if that could prolong the resistance but also offer tumour control. Nobody seems to have all the exact answers on Z but it does appear a lot of patients have accelerated tumour growth once the tumour has become resistant. If this on again off again approach mantains your current tumours, you might vastly increase the reisistance time frame. Might be something to talk to your oncologist about anyway, if my oncologist can shed any light on this thought I will let you know. Keep on keeping on!
Stephanie
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- November 4, 2012 at 1:14 am
Hi Tina, I have been thinking about Z lately as I was on it very sucessfully prior to surgery (just got my 6 month all clear). I am seeing my oncologist in a couple of days and was going to ask him some questions regarding Z.
It seems from all the reading I have done that Z seems to continue working well for many people if you are taking it on and off, eg one week on one week off. I wondered if that could prolong the resistance but also offer tumour control. Nobody seems to have all the exact answers on Z but it does appear a lot of patients have accelerated tumour growth once the tumour has become resistant. If this on again off again approach mantains your current tumours, you might vastly increase the reisistance time frame. Might be something to talk to your oncologist about anyway, if my oncologist can shed any light on this thought I will let you know. Keep on keeping on!
Stephanie
-
- November 11, 2012 at 8:20 pm
Hi Tina, sorry for taking so long to reply. I have been in to see my oncologist in the last week. My 6 month check post surgery was all clear, I have, for the moment, dodged a bullet, although I know I still have a fully loaded semi automatic gun pointed at me – although its amazing how knowing that can make every day a great one!
I asked him what his thoughts were on interupted use of Zelboraf. He said studies are continuing in this area but a lot of study has been done with targeted lung cancer treatments and interupted use. So it seems there is no definitive answer at the moment.
Zelboraf was a life saver for me. I had 3 sub cutaneous tumours an adrenal tumour and a tumour on the tail of my pancreas. The internals had gotten too big to remove, so I was on Zelboraf for just 7 weeks (had quite severe side effects but 7 weeks isn't long) and the tumours became small enough to surgically remove. My thoughts were that the sooner I got off Zelboraf the less likely I was to become resistant. I also figured that I then may be able to use Zelboraf in the future if need be, my oncologist agreed with my reasoning.
Surgery still seems to be the best way to change the course of this awful cancer, is that a possibility for your tumours?
Hope this email finds you well.
Kind regards
Stephanie
-
- November 11, 2012 at 8:20 pm
Hi Tina, sorry for taking so long to reply. I have been in to see my oncologist in the last week. My 6 month check post surgery was all clear, I have, for the moment, dodged a bullet, although I know I still have a fully loaded semi automatic gun pointed at me – although its amazing how knowing that can make every day a great one!
I asked him what his thoughts were on interupted use of Zelboraf. He said studies are continuing in this area but a lot of study has been done with targeted lung cancer treatments and interupted use. So it seems there is no definitive answer at the moment.
Zelboraf was a life saver for me. I had 3 sub cutaneous tumours an adrenal tumour and a tumour on the tail of my pancreas. The internals had gotten too big to remove, so I was on Zelboraf for just 7 weeks (had quite severe side effects but 7 weeks isn't long) and the tumours became small enough to surgically remove. My thoughts were that the sooner I got off Zelboraf the less likely I was to become resistant. I also figured that I then may be able to use Zelboraf in the future if need be, my oncologist agreed with my reasoning.
Surgery still seems to be the best way to change the course of this awful cancer, is that a possibility for your tumours?
Hope this email finds you well.
Kind regards
Stephanie
-
- November 13, 2012 at 2:21 pm
Stephanie,
My tumors were actually in very similar areas. They have all resolved completely on Zelboraf. I agree that living with this reality can indeed make each day more precious to us!
Thank you for this input. We are seriously considering asking to go off the Z if next scans are clear. We would only make this decision after seeking advice from a specialist at one of the leading hospitals. Have not decided on which one yet…
Thank you again, and congratualtions on the great news of your clear 6 month check!!
Tina
-
- November 13, 2012 at 2:48 pm
Tina – have you opened another thread on WHERE TO GO ? I didn't find one.
WHY WE GO TO MDA ?
It's been voted # 1 Cancer Center in USA for about 7 years in a row now.
It is not far from us – one hour plane flight. Pretty cheap on Southwest Air.
We have been going there since 1990 off and on when Wayne frist had his colon cancer for a second opinion.
It only took a couple of weeks to get in. There's an APPT. REQ. FORM on their website. Quicker once before. We waited for biopsy and Braf test etc. here.
We feel that when you have the WORST – YOU GO TO THE BEST !!!!!! It's really that simple.
We love our care there. Wayne had a problem on the weekend right after starting ZEL – THE DOC himself called
him back in under 5 minutes…..this was ON WEEKEND NOW – and not some ASST. or NURSE PRAC.
Wayne was cancer free in 7 weeks having gone there after learning he had it in his liver, lungs, sternum, spine. No brain mets. He had a mole behind his right ear removed there in 1999. Second opinion for colon cancer in 1990.
We do not stay with small town DOCS for anything concerning cancer. We've seen too much ! Watching some die now that are too stubborn and hard headed to get out of here and go for the best of the best of the best. '
We stay at Rotarty House Hotel….affordable and is attached to MDA CANCER CENTER ! Houston Ground Angels picks us up FREE at HOBBY and takes us to hotel – and picks us up again to go home. FREE – all it cost is a THANK YOU. This is a wonderful VOLUNTEER ORGANIZATION. Wonderful people.
Wayne can talk to or email someone THAT DAY and GET INFO back is he has any kind of problem.
I know that would not be an easy trip for you from Indiana. We are actually thinking of MOVING THERE as soon as Wayne is done with work in 1.5 years if the Good Lord will allow. We'd like to go sooner but there's that pesky little problem of MONEY and WORK, and INS. :-))))
Let me know if you start your thread…….maybe I looked over it.
Nancy (devoted wife of 3 X Warrior Wayne) KEEP THE FAITH !!!!!!!!!!!
-
- November 13, 2012 at 3:33 pm
Thank you, Nancy!
I did open another thread, but it took me a little while because I decided to post our family photo on my profile 🙂
It would be a long trip for us, but sure sounds like it would be worth it. I looked into trains, but it would take 32 HOURS!! I would MUCH rather drive it,haha! Flying MIGHT be an option, I'd have to check further into the risks with my leg. Wouldn't that be great if you guys moved to Indiana — we'd have to be sure to meet up at some point!! We lived in TX for abt 11 yrs. First in Central Tx, while my husband served in the Army at Fort Hood, and then held a job on post afterwards…then we lived in Brownsville for 2 yrs where he pastored a small home-missions church. Four of our five kiddos were born in Tx… our youngest is a Hoosier 🙂
Lots to think about, and I want to get things headed in whatever direction, so we can get an appt set up for after next scans!
Thank you again,
Tina
-
- November 13, 2012 at 3:58 pm
Top right hand of page has APPT. REQUEST. You could also call and just talk to them and ask HOW LONG they think it might be.
I was talking about moving to HOUSTON – LOLOLOLOL – that's funny ! Not Indiana, though i hear it's wonderful.
I have SEVERE FIBRO and a hundred other issues, so the weather would be best for me. HEY, you just need to move back to TX GIRL- it's not like you don't have a LOT OF HISTORY there.
I'll look for the other thread……………
:-)))) NANCY G. <><
-
- November 13, 2012 at 3:58 pm
Top right hand of page has APPT. REQUEST. You could also call and just talk to them and ask HOW LONG they think it might be.
I was talking about moving to HOUSTON – LOLOLOLOL – that's funny ! Not Indiana, though i hear it's wonderful.
I have SEVERE FIBRO and a hundred other issues, so the weather would be best for me. HEY, you just need to move back to TX GIRL- it's not like you don't have a LOT OF HISTORY there.
I'll look for the other thread……………
:-)))) NANCY G. <><
-
- November 13, 2012 at 3:58 pm
Top right hand of page has APPT. REQUEST. You could also call and just talk to them and ask HOW LONG they think it might be.
I was talking about moving to HOUSTON – LOLOLOLOL – that's funny ! Not Indiana, though i hear it's wonderful.
I have SEVERE FIBRO and a hundred other issues, so the weather would be best for me. HEY, you just need to move back to TX GIRL- it's not like you don't have a LOT OF HISTORY there.
I'll look for the other thread……………
:-)))) NANCY G. <><
-
- November 13, 2012 at 3:33 pm
Thank you, Nancy!
I did open another thread, but it took me a little while because I decided to post our family photo on my profile 🙂
It would be a long trip for us, but sure sounds like it would be worth it. I looked into trains, but it would take 32 HOURS!! I would MUCH rather drive it,haha! Flying MIGHT be an option, I'd have to check further into the risks with my leg. Wouldn't that be great if you guys moved to Indiana — we'd have to be sure to meet up at some point!! We lived in TX for abt 11 yrs. First in Central Tx, while my husband served in the Army at Fort Hood, and then held a job on post afterwards…then we lived in Brownsville for 2 yrs where he pastored a small home-missions church. Four of our five kiddos were born in Tx… our youngest is a Hoosier 🙂
Lots to think about, and I want to get things headed in whatever direction, so we can get an appt set up for after next scans!
Thank you again,
Tina
-
- November 13, 2012 at 3:33 pm
Thank you, Nancy!
I did open another thread, but it took me a little while because I decided to post our family photo on my profile 🙂
It would be a long trip for us, but sure sounds like it would be worth it. I looked into trains, but it would take 32 HOURS!! I would MUCH rather drive it,haha! Flying MIGHT be an option, I'd have to check further into the risks with my leg. Wouldn't that be great if you guys moved to Indiana — we'd have to be sure to meet up at some point!! We lived in TX for abt 11 yrs. First in Central Tx, while my husband served in the Army at Fort Hood, and then held a job on post afterwards…then we lived in Brownsville for 2 yrs where he pastored a small home-missions church. Four of our five kiddos were born in Tx… our youngest is a Hoosier 🙂
Lots to think about, and I want to get things headed in whatever direction, so we can get an appt set up for after next scans!
Thank you again,
Tina
-
- November 13, 2012 at 2:48 pm
Tina – have you opened another thread on WHERE TO GO ? I didn't find one.
WHY WE GO TO MDA ?
It's been voted # 1 Cancer Center in USA for about 7 years in a row now.
It is not far from us – one hour plane flight. Pretty cheap on Southwest Air.
We have been going there since 1990 off and on when Wayne frist had his colon cancer for a second opinion.
It only took a couple of weeks to get in. There's an APPT. REQ. FORM on their website. Quicker once before. We waited for biopsy and Braf test etc. here.
We feel that when you have the WORST – YOU GO TO THE BEST !!!!!! It's really that simple.
We love our care there. Wayne had a problem on the weekend right after starting ZEL – THE DOC himself called
him back in under 5 minutes…..this was ON WEEKEND NOW – and not some ASST. or NURSE PRAC.
Wayne was cancer free in 7 weeks having gone there after learning he had it in his liver, lungs, sternum, spine. No brain mets. He had a mole behind his right ear removed there in 1999. Second opinion for colon cancer in 1990.
We do not stay with small town DOCS for anything concerning cancer. We've seen too much ! Watching some die now that are too stubborn and hard headed to get out of here and go for the best of the best of the best. '
We stay at Rotarty House Hotel….affordable and is attached to MDA CANCER CENTER ! Houston Ground Angels picks us up FREE at HOBBY and takes us to hotel – and picks us up again to go home. FREE – all it cost is a THANK YOU. This is a wonderful VOLUNTEER ORGANIZATION. Wonderful people.
Wayne can talk to or email someone THAT DAY and GET INFO back is he has any kind of problem.
I know that would not be an easy trip for you from Indiana. We are actually thinking of MOVING THERE as soon as Wayne is done with work in 1.5 years if the Good Lord will allow. We'd like to go sooner but there's that pesky little problem of MONEY and WORK, and INS. :-))))
Let me know if you start your thread…….maybe I looked over it.
Nancy (devoted wife of 3 X Warrior Wayne) KEEP THE FAITH !!!!!!!!!!!
-
- November 13, 2012 at 2:48 pm
Tina – have you opened another thread on WHERE TO GO ? I didn't find one.
WHY WE GO TO MDA ?
It's been voted # 1 Cancer Center in USA for about 7 years in a row now.
It is not far from us – one hour plane flight. Pretty cheap on Southwest Air.
We have been going there since 1990 off and on when Wayne frist had his colon cancer for a second opinion.
It only took a couple of weeks to get in. There's an APPT. REQ. FORM on their website. Quicker once before. We waited for biopsy and Braf test etc. here.
We feel that when you have the WORST – YOU GO TO THE BEST !!!!!! It's really that simple.
We love our care there. Wayne had a problem on the weekend right after starting ZEL – THE DOC himself called
him back in under 5 minutes…..this was ON WEEKEND NOW – and not some ASST. or NURSE PRAC.
Wayne was cancer free in 7 weeks having gone there after learning he had it in his liver, lungs, sternum, spine. No brain mets. He had a mole behind his right ear removed there in 1999. Second opinion for colon cancer in 1990.
We do not stay with small town DOCS for anything concerning cancer. We've seen too much ! Watching some die now that are too stubborn and hard headed to get out of here and go for the best of the best of the best. '
We stay at Rotarty House Hotel….affordable and is attached to MDA CANCER CENTER ! Houston Ground Angels picks us up FREE at HOBBY and takes us to hotel – and picks us up again to go home. FREE – all it cost is a THANK YOU. This is a wonderful VOLUNTEER ORGANIZATION. Wonderful people.
Wayne can talk to or email someone THAT DAY and GET INFO back is he has any kind of problem.
I know that would not be an easy trip for you from Indiana. We are actually thinking of MOVING THERE as soon as Wayne is done with work in 1.5 years if the Good Lord will allow. We'd like to go sooner but there's that pesky little problem of MONEY and WORK, and INS. :-))))
Let me know if you start your thread…….maybe I looked over it.
Nancy (devoted wife of 3 X Warrior Wayne) KEEP THE FAITH !!!!!!!!!!!
-
- November 13, 2012 at 2:21 pm
Stephanie,
My tumors were actually in very similar areas. They have all resolved completely on Zelboraf. I agree that living with this reality can indeed make each day more precious to us!
Thank you for this input. We are seriously considering asking to go off the Z if next scans are clear. We would only make this decision after seeking advice from a specialist at one of the leading hospitals. Have not decided on which one yet…
Thank you again, and congratualtions on the great news of your clear 6 month check!!
Tina
-
- November 13, 2012 at 2:21 pm
Stephanie,
My tumors were actually in very similar areas. They have all resolved completely on Zelboraf. I agree that living with this reality can indeed make each day more precious to us!
Thank you for this input. We are seriously considering asking to go off the Z if next scans are clear. We would only make this decision after seeking advice from a specialist at one of the leading hospitals. Have not decided on which one yet…
Thank you again, and congratualtions on the great news of your clear 6 month check!!
Tina
-
- November 11, 2012 at 8:20 pm
Hi Tina, sorry for taking so long to reply. I have been in to see my oncologist in the last week. My 6 month check post surgery was all clear, I have, for the moment, dodged a bullet, although I know I still have a fully loaded semi automatic gun pointed at me – although its amazing how knowing that can make every day a great one!
I asked him what his thoughts were on interupted use of Zelboraf. He said studies are continuing in this area but a lot of study has been done with targeted lung cancer treatments and interupted use. So it seems there is no definitive answer at the moment.
Zelboraf was a life saver for me. I had 3 sub cutaneous tumours an adrenal tumour and a tumour on the tail of my pancreas. The internals had gotten too big to remove, so I was on Zelboraf for just 7 weeks (had quite severe side effects but 7 weeks isn't long) and the tumours became small enough to surgically remove. My thoughts were that the sooner I got off Zelboraf the less likely I was to become resistant. I also figured that I then may be able to use Zelboraf in the future if need be, my oncologist agreed with my reasoning.
Surgery still seems to be the best way to change the course of this awful cancer, is that a possibility for your tumours?
Hope this email finds you well.
Kind regards
Stephanie
-
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