The recommended dose in the Gilotrif (afatinib) prescribing information is 40 mg once per day. However, at times side effects become unmanageable without a dose reduction, and if a patient already has 40 mg tablets, some oncologists will suggest taking one every other day as a way of reducing the dose without wasting an expensive medication. Such dosage regimens are rarely compared in clinical trials, so there's no definitive way to say which is better, although afatinib has a half-life of 37 hours, so a good portion of the previous dose remains in the bloodstream when a patient takes the next dose two days later.
Thanks for blood marker discussion information. That is very helpful. I was diagnosed with non small cell lung cancer with a lot of bone mets, stage iV one month ago. Now I am at afatinib. I read some articles in the forum. It is said that there will be some mets in brain if not now then in future when already being stage 4. It must happen. Is it true?
I do not have brain mets so far. Some one told me I should take prevention treatment of chemotherapy now. I am not sure if I should do it or not. I hope I can get some opinion. Thanks.
None of that info is sound nor are you likely to hear that from any oncologist who treats nsclc and it's not written on this site. It's very possible to have nsclc and never have brain metastases. Prophylactic brain radiation isn't commonly given to people with nsclc though it is often given to those with sclc.
You evidently have an egfr mutation since you're on afatinib and there's no need to take chemotherapy as long as you have other options. You may want to read up on the most recent information about egfr mutations including steps taken if it no longer keeps the cancer stable.
It sounds like you're doing what you need for now. Sometimes people have old information and don't realize there are several new options and understandings within just a year.
I am sorry I got those info. from some patients of other forums, not on this site. I really hope afatinib will work a while for me. As a patient, I should know what are options there and I am working on it now. GRACE is great help for patients.
There's no need for sorry around here. It's great you've looked for answers and Grace is where I found a home for info and as important a place to connect the dots between info and the individual.
Congrats on the self advocacy and the very best of good luck and hopes for the coming year!
My afatinib dosage is up and 40mg/30mg in turn. I took some vitamin( complex B and B2 200mg per day) to deal with side effects. I feel much better after I take those vitamins specially B2. I am not sure if I am suppose to take vitamin during the treatment. If it is good for me to recover, it may be also good for cancer cells?
There is a concern that high doses of anti-oxidant vitamins such as B2 can reduce the effects of chemo and radiation and promote tumor growth. Many doctors feel that there is a significant distinction between high-dose antioxidant supplement and/or extreme diets versus getting antioxidants through normal dietary intake. As Dr. West has stated:
“As for anti-oxidants, the idea is that anti-oxidants can actually reduce the effectiveness of the chemo and radiation, though in truth this is more of a concern for higher doses of vitamins than dietary levels, unless you were on a very strict/extreme diet. I generally recommend that my patients follow a balanced, varied diet and not go way out of the way to avoid particular foods in moderation, nor to focus on consuming large amounts of any one or two kinds of foods either.” – http://cancergrace.org/forums/index.php?topic=4854.msg29474#msg29474
"It’s also worth bearing in mind that this is “preclinical”, lab-based work, and not actual results in patients. We regularly see preclinical work that purports to find the next astonishing cancer breakthrough, and just as often I remind people that there is a major difference between findings in test tubes or animal models and findings in actual humans with cancer. This applies whether we’re talking about a concern for danger as well as a potential new treatment, since conditions in a lab are not often replicated in a far more complex real world setting.
I think the most significant problem is the lack of evidence as to how the various types of vitamins and supplements interact with ongoing cancer treatment. Naturopathic physician Dr. Patrick Bufi touched on this issue in his thorough discussion of these types of interventions here.
In the first link you provided, the following statement is made:
"Some experts worry that the use of antioxidants during radiation therapy and chemotherapy might serve to protect the very cancer cells that are being targeted. A 2008 study in Cancer Research showed that vitamin C supplements blunted the effectiveness of chemotherapy by 30% to 70%."
As stated in that article, the use of supplements and high-dose vitamins remains controversial, and I would especially be cautious in their use during ongoing treatment.
I did some further researching on this issue. A lot of articles are discuss the antioxidants food with effective on cancer treatment. I think cancer patients should not take high dosage antioxidants supplement. Vitamin A,C and E are antioxidants supplement and we should not take them. For complex B and B2, which I am taking, are not in this range.
vitamin B complex listen (VY-tuh-min ... KOM-plex)
A compound containing several or all of a group of vitamins and nutrients that the body needs in very small amounts to function and stay healthy. The B vitamins in the vitamin B complex include thiamine, riboflavin, niacin (nicotinic acid), niacinamide (nicotinamide), the vitamin B6 group (including pyridoxine, pyridoxal, pyridoxamine), biotin, pantothenic acid, folic acid, and vitamin B12. Aminobenzoic acid, inositol, and choline are sometimes included as part of the vitamin B complex. The vitamin B complex is water-soluble (can dissolve in water) and is found in yeast, seeds, eggs, liver, meat, and vegetables. Members of the vitamin B complex are being studied in the prevention and treatment of some types of cancer.
When my husband was on chemo/radiation and chemo alone he was also drinking a couple of ensure plus each day. I worried about getting too many vitamins this way so I ask here. Dr. West stated he didn't think a multivitamin supplement like that was a problem (it was about the same as taking 2/1 a day type vitamins). It's the extreme supplementation that is worrisome. Keep it at around 100% of daily needs determined by fda.
Thank you for the information and I think it is helpful for keeping weight.
I take complex B mainly for dealing with the side effect of Gilotrif (afatinib). I can only take 20mg per day before because of terrible side effect. Now, I am taking 40mg/30/mg per day in turn. I have this dose for 40 days already since I take complex B as well.
Thank Jim and Janine all your inputting. They are very helpful!
I have been on Xgeva six months, and I am thinking to stop it. I hope someone can tell or prove it with data Xgeva really help for bone met. This is a kind of new stuff, it is not worth risking for dad side effect with a little help. Please correct me if I am wrong.
There is good evidence that XGEVA is effective in helping to prevent complications from bone mets, as described by Dr. West in a post he wrote at the time of its approval.
Of course, the potential benefit must be weighed against the side effects you're experiencing. As Dr. West described, the alternative treatment, Zometa, has a somewhat different side effect profile, so it may be another option.
Reply # - December 20, 2015, 08:02 PM
The recommended dose in the
The recommended dose in the Gilotrif (afatinib) prescribing information is 40 mg once per day. However, at times side effects become unmanageable without a dose reduction, and if a patient already has 40 mg tablets, some oncologists will suggest taking one every other day as a way of reducing the dose without wasting an expensive medication. Such dosage regimens are rarely compared in clinical trials, so there's no definitive way to say which is better, although afatinib has a half-life of 37 hours, so a good portion of the previous dose remains in the bloodstream when a patient takes the next dose two days later.
JimC
Forum moderator
Reply # - December 22, 2015, 12:01 PM
Thanks JimC for your
Thanks JimC for your explanation.
Reply # - December 25, 2015, 06:26 PM
Another question is about
Another question is about blood testing. CEA and LDH, which is better for lung cancer indicator. I think cea making more sense than the other.
Reply # - December 26, 2015, 02:09 PM
I think this can be of help.
I think this can be of help. Let us know if you have further questions. http://cancergrace.org/lung/2013/01/05/serum-tumor-markers-video/
All best,
Janine
Reply # - December 30, 2015, 10:31 AM
Thanks for blood marker
Thanks for blood marker discussion information. That is very helpful. I was diagnosed with non small cell lung cancer with a lot of bone mets, stage iV one month ago. Now I am at afatinib. I read some articles in the forum. It is said that there will be some mets in brain if not now then in future when already being stage 4. It must happen. Is it true?
I do not have brain mets so far. Some one told me I should take prevention treatment of chemotherapy now. I am not sure if I should do it or not. I hope I can get some opinion. Thanks.
Reply # - December 30, 2015, 03:25 PM
None of that info is sound
None of that info is sound nor are you likely to hear that from any oncologist who treats nsclc and it's not written on this site. It's very possible to have nsclc and never have brain metastases. Prophylactic brain radiation isn't commonly given to people with nsclc though it is often given to those with sclc.
You evidently have an egfr mutation since you're on afatinib and there's no need to take chemotherapy as long as you have other options. You may want to read up on the most recent information about egfr mutations including steps taken if it no longer keeps the cancer stable.
It sounds like you're doing what you need for now. Sometimes people have old information and don't realize there are several new options and understandings within just a year.
Hope your new year is full of living life.
Janine
Reply # - January 1, 2016, 08:55 PM
Thank you Janine so much and
Thank you Janine so much and happy new year!
I am sorry I got those info. from some patients of other forums, not on this site. I really hope afatinib will work a while for me. As a patient, I should know what are options there and I am working on it now. GRACE is great help for patients.
Reply # - January 3, 2016, 03:31 PM
Linda,
Linda,
There's no need for sorry around here. It's great you've looked for answers and Grace is where I found a home for info and as important a place to connect the dots between info and the individual.
Congrats on the self advocacy and the very best of good luck and hopes for the coming year!
Janine
Reply # - March 6, 2016, 06:47 PM
My afatinib dosage is up and
My afatinib dosage is up and 40mg/30mg in turn. I took some vitamin( complex B and B2 200mg per day) to deal with side effects. I feel much better after I take those vitamins specially B2. I am not sure if I am suppose to take vitamin during the treatment. If it is good for me to recover, it may be also good for cancer cells?
Reply # - March 7, 2016, 08:24 AM
Hi Linda,
Hi Linda,
There is a concern that high doses of anti-oxidant vitamins such as B2 can reduce the effects of chemo and radiation and promote tumor growth. Many doctors feel that there is a significant distinction between high-dose antioxidant supplement and/or extreme diets versus getting antioxidants through normal dietary intake. As Dr. West has stated:
“As for anti-oxidants, the idea is that anti-oxidants can actually reduce the effectiveness of the chemo and radiation, though in truth this is more of a concern for higher doses of vitamins than dietary levels, unless you were on a very strict/extreme diet. I generally recommend that my patients follow a balanced, varied diet and not go way out of the way to avoid particular foods in moderation, nor to focus on consuming large amounts of any one or two kinds of foods either.” – http://cancergrace.org/forums/index.php?topic=4854.msg29474#msg29474
There’s also an interesting interview with Dr. Bufi on the subject of diet and supplements: http://cancergrace.org/cancer-101/files/2009/02/dr-bufi-interview-trans…
Dr. West also said:
"It’s also worth bearing in mind that this is “preclinical”, lab-based work, and not actual results in patients. We regularly see preclinical work that purports to find the next astonishing cancer breakthrough, and just as often I remind people that there is a major difference between findings in test tubes or animal models and findings in actual humans with cancer. This applies whether we’re talking about a concern for danger as well as a potential new treatment, since conditions in a lab are not often replicated in a far more complex real world setting.
That said, I think it’s important to NOT presume that anti-oxidants are beneficial for cancer and should be taken in high quantities, especially in mega-doses outside of just what you’d get in a balanced diet." - http://cancergrace.org/topic/antioxidants-support-tumor-growth#post-126…
JimC
Forum moderator
Reply # - March 7, 2016, 04:49 PM
Hello Jim,
Hello Jim,
Thank you for all information. I found some information like this http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/cancer… . People are saying something differently. So what is the right way though?
Reply # - March 7, 2016, 07:00 PM
Here is another one, http:/
Here is another one, http://www.livestrong.com/article/506502-vitamin-b12-chemotherapy/
Reply # - March 8, 2016, 04:03 PM
Hi Linda,
Hi Linda,
I think the most significant problem is the lack of evidence as to how the various types of vitamins and supplements interact with ongoing cancer treatment. Naturopathic physician Dr. Patrick Bufi touched on this issue in his thorough discussion of these types of interventions here.
In the first link you provided, the following statement is made:
"Some experts worry that the use of antioxidants during radiation therapy and chemotherapy might serve to protect the very cancer cells that are being targeted. A 2008 study in Cancer Research showed that vitamin C supplements blunted the effectiveness of chemotherapy by 30% to 70%."
As stated in that article, the use of supplements and high-dose vitamins remains controversial, and I would especially be cautious in their use during ongoing treatment.
JimC
Forum moderator
Reply # - March 8, 2016, 07:53 PM
Hi Jim,
Hi Jim,
I did some further researching on this issue. A lot of articles are discuss the antioxidants food with effective on cancer treatment. I think cancer patients should not take high dosage antioxidants supplement. Vitamin A,C and E are antioxidants supplement and we should not take them. For complex B and B2, which I am taking, are not in this range.
Here is the link of NIC 0f http://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=5564…
It says:
vitamin B complex listen (VY-tuh-min ... KOM-plex)
A compound containing several or all of a group of vitamins and nutrients that the body needs in very small amounts to function and stay healthy. The B vitamins in the vitamin B complex include thiamine, riboflavin, niacin (nicotinic acid), niacinamide (nicotinamide), the vitamin B6 group (including pyridoxine, pyridoxal, pyridoxamine), biotin, pantothenic acid, folic acid, and vitamin B12. Aminobenzoic acid, inositol, and choline are sometimes included as part of the vitamin B complex. The vitamin B complex is water-soluble (can dissolve in water) and is found in yeast, seeds, eggs, liver, meat, and vegetables. Members of the vitamin B complex are being studied in the prevention and treatment of some types of cancer.
So, it looks like complex B is safe.
Linda
Reply # - March 9, 2016, 01:07 PM
Hi Linda,
Hi Linda,
When my husband was on chemo/radiation and chemo alone he was also drinking a couple of ensure plus each day. I worried about getting too many vitamins this way so I ask here. Dr. West stated he didn't think a multivitamin supplement like that was a problem (it was about the same as taking 2/1 a day type vitamins). It's the extreme supplementation that is worrisome. Keep it at around 100% of daily needs determined by fda.
I hope that's helpful,
Janine
Reply # - March 10, 2016, 04:32 PM
Hi Janine,
Hi Janine,
Thank you for the information and I think it is helpful for keeping weight.
I take complex B mainly for dealing with the side effect of Gilotrif (afatinib). I can only take 20mg per day before because of terrible side effect. Now, I am taking 40mg/30/mg per day in turn. I have this dose for 40 days already since I take complex B as well.
Thank Jim and Janine all your inputting. They are very helpful!
Linda
Reply # - September 20, 2016, 07:18 PM
I have been on Xgeva six
I have been on Xgeva six months, and I am thinking to stop it. I hope someone can tell or prove it with data Xgeva really help for bone met. This is a kind of new stuff, it is not worth risking for dad side effect with a little help. Please correct me if I am wrong.
Reply # - September 21, 2016, 05:44 AM
Hi Linda,
Hi Linda,
There is good evidence that XGEVA is effective in helping to prevent complications from bone mets, as described by Dr. West in a post he wrote at the time of its approval.
Of course, the potential benefit must be weighed against the side effects you're experiencing. As Dr. West described, the alternative treatment, Zometa, has a somewhat different side effect profile, so it may be another option.
JimC
Forum moderator