Has anyone else ordered Tykerb yet?

Esther · 04-11-2007, 12:03 PM

I just got my Tykerb order yesterday. I must say the process was long and it seem inefficient.

First I got a call from GSK saying they had received the prescription and would be forwarding it on to a pharmacy. The next day I got a call from the pharmacy, saying they had received it, and went over my home address.

Then I got a 2nd call from the pharmacy to verify how I was going to pay for the co-pay.

3rd call came the next day and I wasn't home, so they left a message. Called them back on Monday, and they started quizzing me on the reasons for being prescriped Tykerb. I got annoyed, I wasn't feeling that great, and pushed back and asked why she needed to ask all those questions if my onc prescribed it for me and my ins co was covering.

She claimed she had to do it, and proceeds to verbally give me the Tykerb side-effects. I had already gotten that from the onc's office as well as a hand-out so it was all wasted effort.

Finally the Tykerb arrived on Tuesday am, almost a week after my onc sent my prescription GSK cares program.

Did I just get a messed up pharmacy or are others having to wait this long?

Carolyns · 04-11-2007, 07:44 PM

Hi Esther,

I read about someone waiting a while for their Lapatanib on another board. It finally came in the mail after a fairly long wait.

I am glad that it came. How do you feel after your first dose?

Love, Hope, and Peace,

Carolyns

michele u · 04-11-2007, 08:11 PM

Esther, what stage are you?

Lolly · 04-11-2007, 08:20 PM

Esther, a friend from my center is getting started on the process, and I'm probably starting the paperwork next week, will post how it goes but gosh, it seems pretty strange that we have to go through all this if we have insurance, our oncs have prescribed an approved drug, and we NEED it. Doesn't seem like Genentech made it so difficult when Herceptin was finally approved.

<3 Lolly

Esther · 04-11-2007, 10:36 PM

Carolyn, after my dosage I do not feel any side effects that I can tell, but perhaps the effects are cumulative.

Michelle I am stage 4, I am in my 4th year now.

supermehra · 04-12-2007, 02:37 AM

I got my 30 day supply delivered yesterday after 3 weeks of co-ordinating with a doctor and a pharmacy... I paid for my supply.

Fairly hassle free... starting soon... need to undertake excision of a tumour first.

SoCalGal · 04-12-2007, 09:20 AM

It took me nearly a week to get Tykerb w/Xeloda. Then it took me an entire night and day of obsessing to figure out what to take when. It didn't help that my doc's advice contradicted the Tykerb instructions. It did help to call Tykerb Cares, they were informative. Dispite the cheesy name, they do care and connected me to a pharmacist right away.

Here's my routine: I get up, (have to have my coffee), take tykerb then wait an hour (while I shower and get dressed, make up, house tidy, etc) and then I eat and then I take the xeloda.

The first few days I had some queasy waves but mild. Also have a loose stomach. I started taking CULTERELLE, a probiotic, and that really calmed my tummy gurgling and diarhia. I prefer Culterelle because they don't require refridgeratrion but any probiotic will help the gastro track.

Today is day #7 and so far I'm really doing okay. Reading stories of encouragement and survival, on this site, has been extremely helpful and hopeful for me. I am starting to get back on my feet, since the met. diagnosis of April 9th. Starting to breathe again and have hope. Thanks to all who takes the time to post. --Flori

Shell · 04-12-2007, 09:44 AM

Esther-

Although my onc talked to me about it over a week ago, only today did they have me fill out the paperwork. I wil see how long it takes to get. Also am not certain about insurance, but I am hoping it will be covered. I was on tykerb previously (with xeloda) and had no additional side effects, as I already had H/F and diarrhea.

Regards,

Esther · 04-12-2007, 11:19 AM

Flori, stay in touch, as that is the regimen I will be on, Tykerb/Xeloda as well as Herceptin.

I am experiencing nausea as well, even thought it is only my 2nd day of Tykerb.

SoCalGal · 04-12-2007, 07:48 PM

Ester, I had symptoms the first two days and then felt fine the next few days. Don't really know why but you will be glad to know that on day 7 it's not worse than day 1 - and actually better - no nausea. My energy is dropping off but the emotional toll is exhausting. Right now I am wondering why my onc didn't put me back on herceptin with the Tykerb/Xeloda. It seems like a few people are on that regime. I have been too chicken to ask my staging or ask for a copy of my scans - very unlike me to bury my head. Maybe next week I'll ask. Stay in touch. Flori

margo · 04-14-2007, 06:10 AM

Last week, my Oncologist told me that he is adding Tykerb to my weekly Herceptin treatment in mid-June. I will be in an "EAP without Herceptin Failure".

The information in this thread (drug delivery, etc.) is an eye-opener. Many thanks to all of you, as I am able to ask my Oncologist more intelligent questions.

I will post information as I work through the process.

Thank you, again,

Margo

Muldoonmom · 04-23-2007, 05:12 PM

Hi Esther,

It took 3 weeks to finally get my tykerb prescription filled but the problem was CIGNA - my onc prescribed it without Xeloda (I had already had 10 months of Xeloda about 6 years ago and ended it when I had progression.) Also, I had never had an anthracycline so after nearly three weeks of back and forth with my insurance company and my doc, I was finally approved. From that point forward, it went smoothly.

I think with any new drug that is expensive, there is going to be some hassle - we are paving the way for our sisters!

Good luck with the Tykerb!

Debbie

Odette · 04-23-2007, 08:12 PM

Hi Flori,

Thank you for your encouraging beautiful letter. Hope this finds you well!
How did it go with the oncologist? Was he helpful about the side effects?
Are you off the Xeloda all week?

It sounds like you had been through the worse in the past years. Mental illness can be devastating to everyone involved. I was very sorry to hear about your divorce. I also notice that even now you are thinking about your children more than about yourself.

I too had a terribly stressful year before my diagnosis with trying to nurse back to life one of my kids who was gravely ill. She did recover which is our miracle and I really don't regret anything. Now it is the time to take care of ourselves. I'm trying to find a new balance of selfishness and doing things for others.

You are right about the fear factor being worse than any cancer or side effect. What helps me most is that I make myself believe that the kids and my husband will be OK even if something happens to me.

My counts were still quite low two weeks ago but it is just wonderful to feel relatively well after the chemo/surgery/rad ordeal. I hope you will be cancer free and well again after this X + T treatment and will be able to enjoy your wonderful new relationship and keeping in touch with your children while they are in college.

I'm still waiting for my Tykerb approval, at least I don't have to start on the Xeloda yet either.

Thanks for asking for the special Tykerb Xeloda section! It worked out well.
Let us know how is everything going, and I’ll keep you updated too.

Odette

SoCalGal · 04-24-2007, 11:18 AM

Hi BHutchison,

To answer your questions re: tykerb/xeloda...nausea is mild, low grade, ANNOYING but no puking. Tykerb alone is mild nausea on and off controlled by mints, or saltines. T/xeloda combo is worse, but I have not taken zofran yet. The diarrhia is the worst of my symptoms, along with total lack of appetite. It's that constant low level feeling of not feeling well, being queezy, the runs, etc. it all adds up to a difficult day. (Actually spelling all these words is pretty hard, as well.)

I think the Tykerb is very do-able - probably similar to herceptin once your system adjusts. The Xeloda is more challanging but you can also mess around with the dosing a bit to find the amount you can stand. Ask your onc for some guidelines. I have heard of one week on, one week off on Xeloda and would like to find out more about it. I plan to tough out at least another round of this crap and just keep praying.

Stay strong! --Flori

Joy · 04-24-2007, 11:34 AM

To have all of you who are willing to share everything so freely. And you are all so inspirational and yes, pioneering. I love that despite the tough time you have experienced miracles, important ones. I needed that encouragement and I'm following your stories closely. I'm also praying and holding you in healing white light...where there is no nausea or diarrhea ALLOWED!