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

Odette · 04-14-2007, 12:03 PM

Dear Esther, Flori and Margo,

We are all in the same boat, the Xeloda Tykerb boat I guess.

I just turned in my paperwork to have it faxed to Tykerb on Friday. I'm quite nervous that my insurance will not pay for it. The social worker already had to fight it out with Anthem that they pay for the Xeloda.

Maybe they'll assist me at least. I'm also nervous about the side effects, this will be my second summer in a row on chemo.

What schedule are you gals on for Xeloda? Two weeks on one week off?
I'm hoping to be on the one on one off schedule, but I'll have to contact my second opinion doc about that at MSKCC.

My other big question is: would COQ10 be safe/ appropriate to take along with the X+T??
If I ask my onc here I know he'll say NOOO.

So happy I met you gals!!

Sorry for my grammar, I did not grow up in an English speaking country.

Best to all, and prayers,

Odette

SoCalGal · 04-15-2007, 10:11 AM

Hi Odette,

I am on 14 days on xeloda, 7 days off, along with tykerb everyday. I'm on day #10 of the routine. So far, so good - meaning side effects are not horrible. I think the most helpful for me, is taking a probiotic everyday for restoring the gastro track. I don't know about coQ10. I also found that eating a very basic bland diet is better for my system - less violent stomach episodes and controls the diahrria. I have not had to take imodium yet - I would if it got bad enough. The only other thing I can say is have faith and believe in miracles. And write letters to your insurance people. Anything in writing is taken seriously and it forces them to worry about you creating a "paper trail" for a future law suit.

Odette · 04-15-2007, 06:02 PM

Dear Flori,

thank you for the encouraging words!
I do hope that this Tykerb Xeloda combination will work for all of us, but especially will wipe out your mets on the lung and sternum!
I will get that probiotic before I'll start, thank you for the recommendation.
The reason I'm so nervous about this is that my WBC is still low (3.0) from my last chemo and radiation, my oncologist does not seem to be concerned about it. I ended up in the emergency room/hospital twice with neutropenic fever when my counts were very low.

Here is some basic info about the COQ10.
http://www.cancer.gov/cancertopics/p...ymeQ10/Patient
I think some people take it to strengthen their heart while on Herceptin.

So far I've been just working on my diet, but I just arrived to the idea that COQ10 might be helpful to prevent recurrence, but now I'm not sure if it'll be OK with Xeloda (since it is an antioxidant). I'll let you know if I find out good information on this.

I do understand your hesitation about asking for your reports. I always get quite depressed lose a couple of days when I see my scan reports, but it does make me feel more in charge.

If you don't mind me asking: what kind of marker does your doctor use?

Soon you will get your week off of Xeloda. Let us know how you feel then?

Best wishes to you and prayers,

Odette

SoCalGal · 04-15-2007, 09:40 PM

Hi Odette,

He checked a bunch of markers - here's the list:
CEA (16.6)
CA 15-3 (36.1)
CA 125 (57)
CA 27.29 (67)
When I was on herceptin and everything else for that 20 months, I did accupuncture and chinese herbs. It seemed to help with my energy and my blood count held out. I am always slightly anemic it seems, so I ususally take an iron supplement from WHole Foods. I am not taking anything else yet, until I see if it is all okay with the doc. And you are RIGHT about knowledge being power - I know when I catch my breath I will move back into action mode. I still can't believe that I finally have metastatic disease. It just seems surreal. One year ago several doctors recommended that I go back on chemo, but my Oncologist and surgeon (who have kept me alive for 11 years) both said this disease has had plenty of time to "show up" and since I had no measurable disease except the tiny local recurrance, they both thought I should not go back on chemo. Now I regret it but I guess even if I had there are never any sure answers with cancer. The only sure thing is to pray and keep the faith. Thanks for your message. --Flori

Lisa Prisco · 04-17-2007, 06:18 AM

Hi Everyone,

This is my first post on this site. I frequent the YSC board and recognize many of the same ladies. I look forward to getting to know you all, as well.

Hi Carolyns! She actually told me to check out this board.

I, too, waited for a while before receiving my Tykerb. I am not taking it with Xeloda because I have already had progression while on it.

I have been on Tykerb for a week now and have experienced diarrhea, general stomach upset and lack of appetite. It does seem to have gotten better, though. I have only taken Immodium once, and have probably caused myself to get a little "backed up" in the process! A never ending ritual of poop-management!

I appreciate the advice to try Probiotics. I will purchase some today!

I take my Tykerb right before bed. When does everyone else take theirs?
I tried to take it earlier in the day and found that it just made me more nauseous during my waking hours....while when I'm asleep, I don't seem to feel nauseous.

Odette · 04-17-2007, 07:48 PM

Hello,

I feel like we should keep this thread going about Tykerb, since I'm sure a lot of people are about to start it now that it has been approved.

Lisa, you are taking Tykerb by itself or in combination with sg?
I wish I did not have to take it with Xeloda, because it sounds like Xeloda is the one with the worse side effects.
I'm waiting for my approval from GSK.

Best wishes,

Odette

SoCalGal · 04-17-2007, 07:50 PM

I've been taking mine in the morning, but maybe I'll try switching to nights. Today is day #12 for me and the first day that I'm feeling REALLY naseated. I was not able to take the xeloda this morning but my Onc said not to worry and to just take it tonight. I'll see if I feel any better. I can't imagine having this life for the next ??? All I seem to do is try and manage symptoms and what works on one day does not work the next day. I did take another probiotic this evening. They really seem to help as does small amounts of ativan for nausea. It just makes me so groggy. Okay, on a positive note, I'm still here to moan and groan. Bought new nail polish today - maybe I'll try and do my nails.

SoCalGal · 04-17-2007, 07:54 PM

PS - Odette -

Do you know how we can start a TYKERB forum/group or section? I still cannot always figure out how to find these pages

Is your green tea decaf? Just curious...

Odette · 04-17-2007, 08:47 PM

Flori,

Yes, it would be helpful to have all the Tykerb info together.
Sorry, do not know how.
Green tea has a lot less caffeine than coffee, and I actually like to have a little caffeine, so I drink regular. At first I did not like the taste of green tea but found a wonderful brand Harney and Sons Japanese Sencha Green tea. I got used to it. (I order it by mail.)
NCI has a number of clinical trials with green tea. I figure they might be onto something.

Good night, good luck,

Odette