tykerb results

sally · 01-11-2008, 07:57 AM

I just thought I waould let you know how the tykerb had been working. I was on 5 pills a day with 2 xeloda 2x a day for about 6 weeks. Went off it for 2 weeks to recouperate. Went back on 3 tykerb a day and worked xeloda in slowly for about another 6 weeks. Then I went off it due to severe hand and foot among other side effects. Prior to treament I had 2 spots on my liver and two spots in my lymphnodes outside my liver. I just got scanned again after being on this treatment (with no consistancy) and the two spots on my liver are gone and the lymphnodes have shrunk but are still there. I think this worked well for the amount of drug I actually got into my system. I am currently on 2 tykerb a day and will work the xeloda in in about a week. Thanks for listening and I hope all is well for everyone in the new year and many after. Sally

goops · 01-11-2008, 04:21 PM

Congratulations on great results! May you continue to improve.

tousled1 · 01-11-2008, 04:40 PM

Sally,

That's amazing news! I hope that the treatment continues to work for you.

Becca · 01-11-2008, 04:40 PM

Sally, that is such good news for you! Glad it is helping, even if you have had severe side effects that have made your dosing erratic. Sometimes I get down dealing with the nausea, fatigue, etc, but I hope I get to stay on the T/X. I am to have scans again on the 23--which has me somewhat uptight--the waiting for the scans, the going through the scans, then waiting for the results, and meanwhile all the "what if's" that plague the mind. Best wishes for NED soon for you!

Jean · 01-11-2008, 05:47 PM

Wow,
that is impressive! I am so happy for you. Love to hear that kind of news.

All good Wishes,
Jean

Vanessa · 01-11-2008, 10:58 PM

So glad you are seeing results with the Tykerb/Zeloda. Congratulations! I am currently on Tykerb, Abraxane and Herceptin. I don't know the results yet, I should be doing scans before the end of the month. I can barely take 3 Tykerbs. The side effects for me have been really hard. My doctor tells me to stay at 3. I hope I still get good results. We will know soon. If not, I may have to take 4 or 5.

Anyway, good luck to you and I hope your results contnue to be good!!

sally · 01-12-2008, 09:48 AM

Vanessa, I have been reading your posts and your symptoms are alot like mine. I have also had a very hard time so I am currently at 2 tykerb a day. I started 5 days ago, so far so good. Hopefully 3 will do the trick for you. Good luck. Sally

hutchibk · 01-13-2008, 11:21 AM

Yippee for Tykerb/Xeloda!... I take the full dose of both (5 Tykerb everyday and 3 XelodaAM and 4 XelodaPM) and have handled it very well, but I know many others who have taken the reduced doses and are also getting excellent results like you!

Mary Anne in TX · 01-13-2008, 04:50 PM

Yippee for just the right mix for you! So happy for your! ma

Jackie07 · 01-13-2008, 06:20 PM

Thanks for sharing the good news.

chrisy · 01-14-2008, 11:05 AM

Wow, that's great news - thanks for sharing. Adding Xeloda to the Tykerb may be in the stars for me shortly so for my own selfish reasons, I love to hear such a success story!

sally · 01-14-2008, 01:48 PM

Thanks for all the positive feedback. It's nice to know that someone is listening. I start xeloda again tomorrow. 2-500 mg 2x a day. I hope I can tolerate it this time. I am still on 2 tykerb a day. Maybe that one tykerb pill will make all the difference for toleration. I was on 3 tykerb previously and it was too much with the xeloda. The hand and foot was terrible. Well just thought I would let you in on the latest. Thanks again. Sally

hutchibk · 01-14-2008, 04:31 PM

Sally - be sure you are limiting folic acid in your supplements (found in B-complex and multi-vitamins, neither of which I currently take while on T/X) as my nutritional doc contends that it can enhance/worsen side effects when taking Tykerb/Xeloda, and perhaps that comes into play for you. Don't worry about getting it in your normal diet, that is apparently not an issue. Also, no grapefruit products at all when on these drugs.

And for hand foot, consider vitamin B6 every morning and every evening. I take a total of about 100-150 mg a day and I have had essentially NO hand/foot symptoms after 8.5 months on T/X. I think
you have to get a jump on the B6 for symptom management for it to really work well, and not wait for side effects and try to play catch up... just my opinion. You can take up to 3-400 mg a day, I think, if the lower doses don't seem to do the job.

koolmom · 01-15-2008, 02:32 PM

Yeah! Great news! Horray to Tykerb/Xeloda!

Kristi · 01-18-2008, 04:56 PM

See the winter Cure issue (Vol. 6, No 6) 2007 page 65

"Still it was big new this past summer when two researchers from the Univrsity of Chicago calculated that taking a breast cancer drug with food could save patients and their insurers $1700 per month. The bioavailability of Tykerb increases more than three times when the drug is taken with a highfat meal....Their analysis was based on a pase 1 clinical trial with 27 patients...But don't start cutting your dose. Tykerb's label was written based on phase III clinical trial tests for safety and efficacy...Tyko's manufacturer (says) in early testing, taking the drug with food produced a wide range of bioavailability--some people ended up with much higher blood levels of the drug than others, probably because of different metabolisms and differences in what they eat..."

Thought you all might be interested in this. I just saw it. Kristi

hutchibk · 01-18-2008, 05:27 PM

The potential of metabolism differentials and the question of strict dietary adherence by the patient makes that concept a bit too tricky right now... and it may never work out realistically in execution as it appears it would in theory. I talked to one of the GSK scientists who worked on Tykerb from start to finish at SABCS about it and he said that those theories are easier for the mass media to talk about than for them to become reality... but the studies are being done and who knows, maybe someday something will come of it.