› Forums › General Melanoma Community › 1 year on combo and 8 months NED!
- This topic has 25 replies, 7 voices, and was last updated 5 years, 8 months ago by
Wespero.
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- August 26, 2014 at 10:34 am
I wanted to share the good news and update everyone on Rudy's health status. His last scan on July 25th showed no evidence of disease. The date of that scan was the 1 year mark of him starting the combo and 8 months NED status. His oncologist said that Rudy is one of three of his patients that are still responding to this therapy with Rudy being the patient with the most months of NED status! It's important to note that for the past 4 months Rudy has been on an intermittent dosing schedule of 2 weeks on combo 1 week off. He took a 1 month break from the combo back in April which was the month before he started intermittent dosing. Taking a month off of the medication was Rudy's idea and he did not tell his oncologist until after the fact. His doctor scolded him and said that Rudy had dodged a bullet and that what he did was "non-compliant" but he was smiling all the while and quite amazed that his scan was clear despite his rebellion.
I'm sure that many are thinking that Rudy is playing russian roulette but it's not a decision that he made lightly. For him, it's a quality of life issue along with a strong belief in the effectiveness of the alternative meds he is taking. I have shared before that Rudy has been taking hemp oil since May of 2013 (he was diagnosed stage 4 in February 2013). We believe that the oil is playing a big role in his success so far in battling this disease. The hemp oil (he makes it himself) is not legal in this country, yet, it has proven healing abilities and is safer than any chemotherapy drug offered by the pharmaceutical companies. There are no side effects other than slight drowsiness. We know personally two melanoma patients who are both currently NED status and the only treatment they have ever done is hemp oil. I am not suggesting that this is the answer for everyone…I'm just letting you all know that there are other things out there. Not all are "snake oils" just because they have not been FDA approved. Do the research…dig deep, it's your life…do all you can to save it.
We also strongly believe in having a positive mental attitude and eating a healthy diet. Last but of most importance to us is holding on to our faith, knowing that it's all in Our Heavenly Father's hands.
God bless you all!
Gina
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- August 26, 2014 at 10:47 am
First, i would like to say that im really happy about the succes of your husband and i hope it will be for a very long time.
Im also on Combo for 5 months and NED so far.
I would like to make some questions to you about some decisions were made
What was the reason to have 1 month break? i know he is taken also hemp oil but is taken also now and with COMBO as well.
Was your Doc idea to do this on/off treatment? is he doing with others as well?
Thanks a lot and i hope your husband is NED for ever ……
Jualonso
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- August 27, 2014 at 7:14 am
Jualonso,
Thank you and I hope for your continued success on COMBO as well! Rudy has been taking hemp oil everyday since May of 2013, so it has been in addition to the COMBO.
There were a few reasons that Rudy decided to take a one month break from the COMBO. First reason was that he was tired of dealing with the side effects. Although they have been manageable, he just needed a break. Second, he felt that the only way to know if the hemp oil is working was to stop taking the the other meds and see if his melanoma returned. Obviously, he realizes that just because it did not return it really did not prove anything. It was the conformation he was looking for and it only proved to him what he already knew. I told him that I would support whatever he decides to do with respect to his treatment, whether or not I believe that its the best thing to do or not. I have to be honest, I was nervous to hear the results of his scan, very nervous! Rudy was not nervous at all. He KNEW that he was still NED.
Again, it was not his doctors idea to take a break from the COMBO. In fact, his doctor was a little upset when Rudy told him what he had done. Rudy only sees him every 3 months now and he always has a PET SCAN done a couple days before his scheduled appointment so that we learn the results when he sees him. So while his doctor was pulling up Rudy's scan results he was telling him that he does not advise him to stop taking the COMBO because his melanoma will return. A minute later after he read the results he was really surprised to see that his scans were just as clear as the one done 3 months previously. He then told Rudy that he had "dodged a bullet" and he laughed! His doctor also told us that if he were the patient he would not have made that same choice.
Rudy's oncologist knows that Rudy is taking hemp oil but he doesn't think that it's playing a role in his success so far in his treatment. Even if he did believe that the hemp oil is making a difference, he can't recommend or give medical advise on a treatment/therapy that has not been approved by the FDA for treatment of cancer. We are very aware of this fact, so we don't ask his opinion about it, but we made sure that he knew that Rudy takes it. It should be noted that his doctor never told him NOT to take it either.
With respect to the on/off schedule in taking the COMBO, the idea was my husbands but his doctor supports him in this decision. Rudy's first treatment was Zelboraf, which he had to take intermittently because of the severity of his side effects on that drug. That drug also worked for him and was still working but he switched to the COMBO in hopes that the side effects would be less, and they were.
As far as we know, Rudy is the only patient that is doing intermittent dosing. Rudy's goal is to stop taking the combo entirely, whether or not that happens remains to be seen! I will keep you posted!
I hope I have answered all your questions in a way that makes sense! If not, please let me know!
Blessings!
Gina
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- August 27, 2014 at 10:46 am
Gina, I'm very happy for you and Rudy. I think you've been careful in your posts to balance your personal views with those of Rudy's onc. Just one point that bears repeating–I've asked my onc about intermittent dosing. She's a former colleague of/mentor to Flaherty (Dana Farber) who is one of the leading researchers in the targeted therapy area. She consulted with Flaherty and others–and folks aren't recommending intermittent dosing on the combo. There obviously hasn't been a trial employing intermittent dosing with the combo, so no one knows for certain one way or the other. Wishing you and Rudy continuing success.
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- August 27, 2014 at 10:46 am
Gina, I'm very happy for you and Rudy. I think you've been careful in your posts to balance your personal views with those of Rudy's onc. Just one point that bears repeating–I've asked my onc about intermittent dosing. She's a former colleague of/mentor to Flaherty (Dana Farber) who is one of the leading researchers in the targeted therapy area. She consulted with Flaherty and others–and folks aren't recommending intermittent dosing on the combo. There obviously hasn't been a trial employing intermittent dosing with the combo, so no one knows for certain one way or the other. Wishing you and Rudy continuing success.
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- August 27, 2014 at 10:46 am
Gina, I'm very happy for you and Rudy. I think you've been careful in your posts to balance your personal views with those of Rudy's onc. Just one point that bears repeating–I've asked my onc about intermittent dosing. She's a former colleague of/mentor to Flaherty (Dana Farber) who is one of the leading researchers in the targeted therapy area. She consulted with Flaherty and others–and folks aren't recommending intermittent dosing on the combo. There obviously hasn't been a trial employing intermittent dosing with the combo, so no one knows for certain one way or the other. Wishing you and Rudy continuing success.
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- August 27, 2014 at 12:43 pm
Hi Mat,
As you said nobody still knows if intermittent dosage of Combo is better than continuos, at least in humans, because in the last video i watched from Antoni Ribas in UCLA, he said that in mice models intermittent dosages are quite better and also he said that right now there are some clinicals trials to see if the response is also better in humans.
It makes a lot of sense, in order to avoid cells to became resistant to reduce the pressure, but we will know better when results coming. I hope it will not be late for us, im now 5 months on Combo with full dosage, last monday i had scan i next week appointment with my Onc. I hope i will be still NED. I know you are around 10 months and still kick in, then we need some information about it asap.
Anyway i will keep an eye on it to get this information as soon as it come out.
Whishing you the best.
Jualonso
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- August 27, 2014 at 12:43 pm
Hi Mat,
As you said nobody still knows if intermittent dosage of Combo is better than continuos, at least in humans, because in the last video i watched from Antoni Ribas in UCLA, he said that in mice models intermittent dosages are quite better and also he said that right now there are some clinicals trials to see if the response is also better in humans.
It makes a lot of sense, in order to avoid cells to became resistant to reduce the pressure, but we will know better when results coming. I hope it will not be late for us, im now 5 months on Combo with full dosage, last monday i had scan i next week appointment with my Onc. I hope i will be still NED. I know you are around 10 months and still kick in, then we need some information about it asap.
Anyway i will keep an eye on it to get this information as soon as it come out.
Whishing you the best.
Jualonso
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- August 27, 2014 at 12:43 pm
Hi Mat,
As you said nobody still knows if intermittent dosage of Combo is better than continuos, at least in humans, because in the last video i watched from Antoni Ribas in UCLA, he said that in mice models intermittent dosages are quite better and also he said that right now there are some clinicals trials to see if the response is also better in humans.
It makes a lot of sense, in order to avoid cells to became resistant to reduce the pressure, but we will know better when results coming. I hope it will not be late for us, im now 5 months on Combo with full dosage, last monday i had scan i next week appointment with my Onc. I hope i will be still NED. I know you are around 10 months and still kick in, then we need some information about it asap.
Anyway i will keep an eye on it to get this information as soon as it come out.
Whishing you the best.
Jualonso
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- August 27, 2014 at 8:28 pm
That's great new for you and Rudy, congratulations!!
We are from the Netherlands and as you know hemp is not an issue here 😉 But all joking aside, my wife is taking it as well – using it in salads etc. How do you use it? And does Rudy take any other alternative medicines? Also, how heavy was his tumor load at the start if you don't mind me asking.
Thanks & wishing you both all the best, Rick
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- August 27, 2014 at 8:28 pm
That's great new for you and Rudy, congratulations!!
We are from the Netherlands and as you know hemp is not an issue here 😉 But all joking aside, my wife is taking it as well – using it in salads etc. How do you use it? And does Rudy take any other alternative medicines? Also, how heavy was his tumor load at the start if you don't mind me asking.
Thanks & wishing you both all the best, Rick
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- August 27, 2014 at 8:28 pm
That's great new for you and Rudy, congratulations!!
We are from the Netherlands and as you know hemp is not an issue here 😉 But all joking aside, my wife is taking it as well – using it in salads etc. How do you use it? And does Rudy take any other alternative medicines? Also, how heavy was his tumor load at the start if you don't mind me asking.
Thanks & wishing you both all the best, Rick
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- August 27, 2014 at 8:50 pm
Thanks Mat, I hope that I was clear on everything. It is a great point to bring up again the intermittent dosing issue. I did not mention (because it only occurred to me when when I read your reply) that his doctor said something to the effect that taking both drugs in combination addresses the issue or potential benefit derived from intermittent dosing….so he doesn't believe its going to benefit him in that way, however, he is allowing Rudy to do it anyway.
Another point worth mentioning is that there are questions that we don't have answers for because these drugs are so new. In many ways all of you on these new meds will be providing more insight into what should or should not be done. Rudy is willing to take the chance to find those answers he is seeking. Mainly, he wants to know if he can safely stop taking the Combo…only time will tell.
One last point that I should remind everyone about is that Rudy believes strongly that he is being helped by all of the alternative treatments and supplements that he is taking. This belief allows him to take chances others may not be willing to take…and I understand completely why others may not.
I hope you are doing well. I pray for all of you in this fight..for strength, wisdom and victory!
Blessings and love to you and yours,
Gina
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- August 27, 2014 at 8:50 pm
Thanks Mat, I hope that I was clear on everything. It is a great point to bring up again the intermittent dosing issue. I did not mention (because it only occurred to me when when I read your reply) that his doctor said something to the effect that taking both drugs in combination addresses the issue or potential benefit derived from intermittent dosing….so he doesn't believe its going to benefit him in that way, however, he is allowing Rudy to do it anyway.
Another point worth mentioning is that there are questions that we don't have answers for because these drugs are so new. In many ways all of you on these new meds will be providing more insight into what should or should not be done. Rudy is willing to take the chance to find those answers he is seeking. Mainly, he wants to know if he can safely stop taking the Combo…only time will tell.
One last point that I should remind everyone about is that Rudy believes strongly that he is being helped by all of the alternative treatments and supplements that he is taking. This belief allows him to take chances others may not be willing to take…and I understand completely why others may not.
I hope you are doing well. I pray for all of you in this fight..for strength, wisdom and victory!
Blessings and love to you and yours,
Gina
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- November 11, 2014 at 6:20 pm
Hi Gina,
I have no doubt that it is the C.O. that is keeping Rudy alive and thriving! Congratulations to you guys. My father is going through a rocky time right now after a month of some intial success with the Combo. I may have mentioned in another comment to you that he was ordered to lay off the Combo because of elevated liver function numbers.
Since being off for about two weeks his tumor has almost grown back to the point where it was before we started any treatment. We are also worried it is spreading internally.
We also have been steadily dosing him with C.O. since early October but nothing near a gram a day as he is already knocked out 75% of the day.
Did you go through any rocky times like this during his treatment? Did you adjust your doses of C.O. to try to get results sooner or did you cruise at a certain amount?
Is there a light at the end of the tunnel for him? I may be too close to this but I am deeply concerned that his liver has been damaged beyond repair and that we cannot continue with any drugs and have impaired him to a point that the C.O. cannot and will never work like it is supposed to.
We thought after shrinking the tumor about 50% we would start the cannabis oil and have them work in conjunction over the next several months until he reached NED status. We were so wrong! This cancer game has been so fickle, I would laugh if I weren't too busy crying. We so badly want the happy ending you have.
Please help with any advice.
Best regards to you and your loved ones– ESPECIALLY RUDY!
E.S.
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- November 11, 2014 at 6:20 pm
Hi Gina,
I have no doubt that it is the C.O. that is keeping Rudy alive and thriving! Congratulations to you guys. My father is going through a rocky time right now after a month of some intial success with the Combo. I may have mentioned in another comment to you that he was ordered to lay off the Combo because of elevated liver function numbers.
Since being off for about two weeks his tumor has almost grown back to the point where it was before we started any treatment. We are also worried it is spreading internally.
We also have been steadily dosing him with C.O. since early October but nothing near a gram a day as he is already knocked out 75% of the day.
Did you go through any rocky times like this during his treatment? Did you adjust your doses of C.O. to try to get results sooner or did you cruise at a certain amount?
Is there a light at the end of the tunnel for him? I may be too close to this but I am deeply concerned that his liver has been damaged beyond repair and that we cannot continue with any drugs and have impaired him to a point that the C.O. cannot and will never work like it is supposed to.
We thought after shrinking the tumor about 50% we would start the cannabis oil and have them work in conjunction over the next several months until he reached NED status. We were so wrong! This cancer game has been so fickle, I would laugh if I weren't too busy crying. We so badly want the happy ending you have.
Please help with any advice.
Best regards to you and your loved ones– ESPECIALLY RUDY!
E.S.
-
- November 11, 2014 at 6:20 pm
Hi Gina,
I have no doubt that it is the C.O. that is keeping Rudy alive and thriving! Congratulations to you guys. My father is going through a rocky time right now after a month of some intial success with the Combo. I may have mentioned in another comment to you that he was ordered to lay off the Combo because of elevated liver function numbers.
Since being off for about two weeks his tumor has almost grown back to the point where it was before we started any treatment. We are also worried it is spreading internally.
We also have been steadily dosing him with C.O. since early October but nothing near a gram a day as he is already knocked out 75% of the day.
Did you go through any rocky times like this during his treatment? Did you adjust your doses of C.O. to try to get results sooner or did you cruise at a certain amount?
Is there a light at the end of the tunnel for him? I may be too close to this but I am deeply concerned that his liver has been damaged beyond repair and that we cannot continue with any drugs and have impaired him to a point that the C.O. cannot and will never work like it is supposed to.
We thought after shrinking the tumor about 50% we would start the cannabis oil and have them work in conjunction over the next several months until he reached NED status. We were so wrong! This cancer game has been so fickle, I would laugh if I weren't too busy crying. We so badly want the happy ending you have.
Please help with any advice.
Best regards to you and your loved ones– ESPECIALLY RUDY!
E.S.
-
- August 27, 2014 at 8:50 pm
Thanks Mat, I hope that I was clear on everything. It is a great point to bring up again the intermittent dosing issue. I did not mention (because it only occurred to me when when I read your reply) that his doctor said something to the effect that taking both drugs in combination addresses the issue or potential benefit derived from intermittent dosing….so he doesn't believe its going to benefit him in that way, however, he is allowing Rudy to do it anyway.
Another point worth mentioning is that there are questions that we don't have answers for because these drugs are so new. In many ways all of you on these new meds will be providing more insight into what should or should not be done. Rudy is willing to take the chance to find those answers he is seeking. Mainly, he wants to know if he can safely stop taking the Combo…only time will tell.
One last point that I should remind everyone about is that Rudy believes strongly that he is being helped by all of the alternative treatments and supplements that he is taking. This belief allows him to take chances others may not be willing to take…and I understand completely why others may not.
I hope you are doing well. I pray for all of you in this fight..for strength, wisdom and victory!
Blessings and love to you and yours,
Gina
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- August 27, 2014 at 7:14 am
Jualonso,
Thank you and I hope for your continued success on COMBO as well! Rudy has been taking hemp oil everyday since May of 2013, so it has been in addition to the COMBO.
There were a few reasons that Rudy decided to take a one month break from the COMBO. First reason was that he was tired of dealing with the side effects. Although they have been manageable, he just needed a break. Second, he felt that the only way to know if the hemp oil is working was to stop taking the the other meds and see if his melanoma returned. Obviously, he realizes that just because it did not return it really did not prove anything. It was the conformation he was looking for and it only proved to him what he already knew. I told him that I would support whatever he decides to do with respect to his treatment, whether or not I believe that its the best thing to do or not. I have to be honest, I was nervous to hear the results of his scan, very nervous! Rudy was not nervous at all. He KNEW that he was still NED.
Again, it was not his doctors idea to take a break from the COMBO. In fact, his doctor was a little upset when Rudy told him what he had done. Rudy only sees him every 3 months now and he always has a PET SCAN done a couple days before his scheduled appointment so that we learn the results when he sees him. So while his doctor was pulling up Rudy's scan results he was telling him that he does not advise him to stop taking the COMBO because his melanoma will return. A minute later after he read the results he was really surprised to see that his scans were just as clear as the one done 3 months previously. He then told Rudy that he had "dodged a bullet" and he laughed! His doctor also told us that if he were the patient he would not have made that same choice.
Rudy's oncologist knows that Rudy is taking hemp oil but he doesn't think that it's playing a role in his success so far in his treatment. Even if he did believe that the hemp oil is making a difference, he can't recommend or give medical advise on a treatment/therapy that has not been approved by the FDA for treatment of cancer. We are very aware of this fact, so we don't ask his opinion about it, but we made sure that he knew that Rudy takes it. It should be noted that his doctor never told him NOT to take it either.
With respect to the on/off schedule in taking the COMBO, the idea was my husbands but his doctor supports him in this decision. Rudy's first treatment was Zelboraf, which he had to take intermittently because of the severity of his side effects on that drug. That drug also worked for him and was still working but he switched to the COMBO in hopes that the side effects would be less, and they were.
As far as we know, Rudy is the only patient that is doing intermittent dosing. Rudy's goal is to stop taking the combo entirely, whether or not that happens remains to be seen! I will keep you posted!
I hope I have answered all your questions in a way that makes sense! If not, please let me know!
Blessings!
Gina
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- August 27, 2014 at 7:14 am
Jualonso,
Thank you and I hope for your continued success on COMBO as well! Rudy has been taking hemp oil everyday since May of 2013, so it has been in addition to the COMBO.
There were a few reasons that Rudy decided to take a one month break from the COMBO. First reason was that he was tired of dealing with the side effects. Although they have been manageable, he just needed a break. Second, he felt that the only way to know if the hemp oil is working was to stop taking the the other meds and see if his melanoma returned. Obviously, he realizes that just because it did not return it really did not prove anything. It was the conformation he was looking for and it only proved to him what he already knew. I told him that I would support whatever he decides to do with respect to his treatment, whether or not I believe that its the best thing to do or not. I have to be honest, I was nervous to hear the results of his scan, very nervous! Rudy was not nervous at all. He KNEW that he was still NED.
Again, it was not his doctors idea to take a break from the COMBO. In fact, his doctor was a little upset when Rudy told him what he had done. Rudy only sees him every 3 months now and he always has a PET SCAN done a couple days before his scheduled appointment so that we learn the results when he sees him. So while his doctor was pulling up Rudy's scan results he was telling him that he does not advise him to stop taking the COMBO because his melanoma will return. A minute later after he read the results he was really surprised to see that his scans were just as clear as the one done 3 months previously. He then told Rudy that he had "dodged a bullet" and he laughed! His doctor also told us that if he were the patient he would not have made that same choice.
Rudy's oncologist knows that Rudy is taking hemp oil but he doesn't think that it's playing a role in his success so far in his treatment. Even if he did believe that the hemp oil is making a difference, he can't recommend or give medical advise on a treatment/therapy that has not been approved by the FDA for treatment of cancer. We are very aware of this fact, so we don't ask his opinion about it, but we made sure that he knew that Rudy takes it. It should be noted that his doctor never told him NOT to take it either.
With respect to the on/off schedule in taking the COMBO, the idea was my husbands but his doctor supports him in this decision. Rudy's first treatment was Zelboraf, which he had to take intermittently because of the severity of his side effects on that drug. That drug also worked for him and was still working but he switched to the COMBO in hopes that the side effects would be less, and they were.
As far as we know, Rudy is the only patient that is doing intermittent dosing. Rudy's goal is to stop taking the combo entirely, whether or not that happens remains to be seen! I will keep you posted!
I hope I have answered all your questions in a way that makes sense! If not, please let me know!
Blessings!
Gina
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- August 26, 2014 at 10:47 am
First, i would like to say that im really happy about the succes of your husband and i hope it will be for a very long time.
Im also on Combo for 5 months and NED so far.
I would like to make some questions to you about some decisions were made
What was the reason to have 1 month break? i know he is taken also hemp oil but is taken also now and with COMBO as well.
Was your Doc idea to do this on/off treatment? is he doing with others as well?
Thanks a lot and i hope your husband is NED for ever ……
Jualonso
-
- August 26, 2014 at 10:47 am
First, i would like to say that im really happy about the succes of your husband and i hope it will be for a very long time.
Im also on Combo for 5 months and NED so far.
I would like to make some questions to you about some decisions were made
What was the reason to have 1 month break? i know he is taken also hemp oil but is taken also now and with COMBO as well.
Was your Doc idea to do this on/off treatment? is he doing with others as well?
Thanks a lot and i hope your husband is NED for ever ……
Jualonso
-
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