? about Tykerb Duration
 

Hello everyone!
Just wondering how many of you have been on or are on Tykerb.
I had a talk with my onc yesterday--I have not been feeling that great lately immediately after taking my T.--sort of chemical feeling if you will???
So we discussed stopping it. I am still NED as far as I know.
I'm sort of scared I am going to recur if I stop but frankly the chemical feeling that I get is new and kind of scary too!
I have been on it for I guess three years now and it has held me. I have been taking 5 pills every day.
Any input is appreciated. We decided to stop and scan in 2 months but after talking with my hubby about it now not so sure that is the best thing.
Thanks everyone!

Re: ? about Tykerb Duration
 

Maybe you could reduce the dose for a while to see if things improve? I have been on tyverb since 2009, with a short break, so far no problems. I hope you find a solution.

Re: ? about Tykerb Duration
 

Gosh what a big decision to make! I felt the reduced dose was a really good suggestion as at least you will be getting some tykerb and you will know if that sorts out the chemical thing.
One of the things we don't have is any good research that tells us how long after being NED on tykerb or herceptin it is safe to stop. I thought I remembered someone posting on the board that Dr Slamon tried to wrestle his patients off herceptin after about 6-7 years as he felt that the patient had most likely got resistence to it by that length of time.
Hopefully someone else will chip in. I suspect it's more difficult to know as tykerb has not been around as long as herceptin so there may be fewer anecdotal reports.
Ellie

Re: ? about Tykerb Duration
 

Nice to hear from you Ellie, and yes, I did discuss a lower dose but that was rejected. :(

Re: ? about Tykerb Duration
 

My neighbor was DX stage 4 brain mets only after completing stage 3 treatments. After successful treatment she was on Tykerb and Herceptin for 2 years, then Tykerb only (6 per day), and after 2 more years is down to 2 tykerb per day, still NED, and feeling great. Sounds like you had an even lower tumor load at the onset....maybe another 2nd opinion? My belief is that if it makes you feel bad, it is probably somewhat harmful to the radiantly healthy majority of our cells, so if there is a doubt, I would ask for yet another opinion from a doc at a major cancer center that specializes in HER2+ BC.

Re: ? about Tykerb Duration
 

Hey every bit of information helps so thank both of you ladies so much! I am going to Duke and they have a great reputation. I am not sure why I am unable to even try the 3 pills a day, the words 'results would be skewed' were used so I don't know what that means. I called back yesterday to again ask about the dose but waiting to hear back. I wish there was a mid-ground and it wasn't all or nothing approach.
And wow, 6 pills a day is a lot! But she is down to 2 and still doing well. I sort of hate to stop it entirely BUT I'm concerned about the way my body feels after I take it. Like my body is saying something and I hate to not listen. But I'm really scared about stopping it too and my family does not want me to stop either. Sigh. Maybe I'll get some more feedback here.... and search for a second opinion, maybe UNC?
Do you ladies mind telling me if that T is taken on an empty or full stomach as that does affect it's strength.
Sigh maybe a trip north is in order, lol!

Re: ? about Tykerb Duration
 

Hi, I am NED (only for 7 months) and I am taking three pills a day of tykerb. I also only take it about 75% of the time. My onc wasn't thrilled when I told him that , but the side effects were getting to me, so I found if I take a break for a few days, I feel better.

I think we need to do what is best for us. What if you take a smaller dose and don't tell them?

I am also on Herceptin. What about adding in Herceptin and reducing tykerb?

I take the tykerb right before bed on an empty stomach.

Laurie

Laurie

Re: ? about Tykerb Duration
 

I was told to take it on an empty stomach, and I take it first thing when I wake up. I take 4 with Xeloda, and went down from 5 as it was all too much. We reduced my Xeloda by one pill per day as well. My sense is that it is more of an art than a science with no absolute answer that applies to all of us. For the record, I am not NED, but when that lucky day comes, I plan to maintain it on a protocol I feel well on! I feel OK on the 4 Tykerb as that is all I took for a few weeks to clear the awful initial side effects of the Xeloda. I was on way to much for me, and we have found a tolerable dose.

If you are not in a trial, I do not see skewed data as an issue. Are they doing their own research without telling you?

Re: ? about Tykerb Duration
 

I think so. :(
And yes, thought about not telling him and taking a lower dose. Prob. is I only have a few refills. I may start taking 3 pills with food this weekend and see how I feel. If not any better, I will try 3 pills without food.
Kind of scary, I am very fortunate to be ned for so long, and I feel like I am being a 'brat' but I cannot discount the way my body feels after taking T. :(
None of us can afford to recur and I don't want to but the feeling that I get after taking T is really making me think.

Re: ? about Tykerb Duration
 

I took Tykerb for one year on the ALTTO trial and there is a correlation between taking it with food and the strength of the effect. It is stronger when taken with food. Something having to do with the fat content of the food, if I remember right. You don't take it with food now, do you? I got very strict instructions that I couldn't eat one hour before or after I took the pills. Good luck finding a solution that is right for you and your boyfriend NED!

Re: ? about Tykerb Duration
 

Ha ha well still no reply from my onc so I think I'm going to start taking 3 pills with food/protein/fat whatever. :) I had been taking 5 pills with no food before or after, did that for 3 yrs. Fingers crossed I can do well with 3 pills and some protein (milk in my am coffee), I will get scanned in 2 months so we'll see! But so far, so good, no bad feeling after taking the 3. :)

Re: ? about Tykerb Duration
 

I wondr why we take more on an empty stomach rather than less on a full one? Pharm wanting to sell more pills? It really makes no sense to me. I thouht it was more effective on an empty stomach, and that was why so instructed....

Re: ? about Tykerb Duration
 

Yes, I'm sure so they can sell more. From what I understand (correct me if I'm wrong!) it becomes stronger when taken with food. So 5 pills with food is WAY too strong, too high a dose. But some docs are giving 3 pills with food, some are saying 5 pills without food. Or really anything but water for that matter.
oops forgot to login. :) Beth

Re: ? about Tykerb Duration
 

I would just tell you onc you want to stay at full dose, and dose reduce on your own. You won't ever run out of pills that way! I was at 5 pills a day, but after 5 months I developed severe diahrrea. I now vary my dose based on my bowels. Some days I take 4 (found out max dose should be 1000mg when given with herceptin), some days I take none. And everything in between. After 2 months of the varied doses, my scan showed continued significant regression, so obviously the dose variances don't hurt. And no more diarrhea! I would never go higher on the dose without doctor approval, but going lower isn't going to make you sicker. I am so happy you have been NED for so long. I hope to be there someday!

Re: ? about Tykerb Duration
 

I have been on tykerb since summer 2008, first with xeloda and the last @2 years with herceptin. I don't think it has made me feel unwell. I take 5 pills and do have trouble with the stomach and fatigue at times. I was off of it for 2 weeks when I went to Europe..my onc said so I could enjoy the trip!! I was told to take it on an empty stomach. Ceesun

Re: ? about Tykerb Duration
 

Somehow I keep missing this!
Just wanted to say glad the 3 pills are suiting you so well and you're not having the side effects. Please let us know how it goes and I am sure you will still have very good scans in a couple of months.
Ellie

Re: ? about Tykerb Duration
 

I was diagnosed with Stage IIIC 9/2004 and Stage IV 2/2009. In 2/2009, Dr. Slamon prescribed 1000mg of Tykerb added to my Herceptin therapy. After 5 days, I had a severe attack of hives and Dr. Slamon reduced the Tykerb to 3 pills (750mg). I have been on Herceptin every three weeks and 750mg of Tykerb (taken at bedtime) ever since. I continue to be NED. Every person metabolizes medication differently. Many people are over medicated in our society with a one size fits all dosing system. Unfortunately for cancer drugs, there is no simple test to determine the least amount of the drug that will get the job done.

If you are on a clinical trial, this may be the reason the onc says it will affect the results and is refusing to adjust the dosage.

Nancy

Re: ? about Tykerb Duration
 

I have been taking 4 tablets of Tykeb with Herceptin after being on TDM-1 for two years. Four pills work very well for me and I remain NED. The direciios warn against taking food and I would not do it. If you wish to take Tykerb with food I would at least call the drug company to find out the reasons for not doing that.
Best,
Barbara

Re: ? about Tykerb Duration
 

I wonder why Barbara went from TDM1 to Tykerb and Herceptin? You say that youremain NED, which is awesome, but I wonder why the change?

Re: ? about Tykerb Duration
 

I think Barbara got some sort of infection or something that was really unusual (and may or may not have had anything to do with the tdm1!) but got her dq'd from the trial. But she is doing great since then, maintaining NED for over 2 years as I recall. She will correct me if I'm wrong I'm sure!