Has anyone else ordered Tykerb yet?

[Esther]

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]

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]

Esther, what stage are you?

[Lolly]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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/pdq/cam/coenzymeQ10/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]

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]

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]

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]

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]

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]

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

[Lisa Prisco]

Hi Odette & Flori,

I am taking Tykerb alone. Having previously taken solo Xeloda, I can attest to the side effects, so I think you are right in feeling that Xeloda is the one that causes the most side effects.

However, I was able to really lessen the diarrhea on Xeloda by just slightly lowering the dosage. And it still was very effective for me for a full year till progression.

Does anyone know if the Tykerb dosage can be lowered and still be effective? Is the dosage calculated by body mass? How many mg. total daily are y'all taking??

I'm taking 1000 mg total daily.

I'm definitely getting some Probiotic today.

Flori, I'm sorry to hear that your nausea is worse than ever on day #12.
When I was on Xeloda, I often could not make it to day #14. I would stop around day #12 as well.....especially as therapy went on towards a year.....I was so toxic....my body would just tell me when it had had enough.

Generally after the week off I felt better......jsut in time to get back on that horse!

Hope you feel better soon!

Lisa

[Lisa Prisco]

I am having a hard time making my signature information appear.

Can you see my signature details?

I saved them, but they don't appear under my name.

Can anyone tell me what I am doing wrong?

ps. OOPS, never mnd! Chemo brain! Duh!

[Shell]

I still don't have the tykerb - reminded my onc about it 6 days ago and his office had me sign the paperwork. yesterday got a call from tykerb cares - called today and they said they needed a prescription card. now that they have that, they fax it over to the supplier, who then takes 48 hours to process things, and then it is shipped to me...we shall see...


kind regards.

[Odette]

Hi Lisa,

I understand the standard dose is 1250 for Tykerb, that is what I'm going to get once it goes through the red tape.

It sounds like your oncologist is having you on a lower dose.

Xeloda: I'm going to take take 1650 x 2 which is quite low for my weight and height, but if he trusts that it is a good dose I'm happy that it might not be too hard on me.

Thanks for the information, I'll probably ask all kinds of questions once I start.

Best wishes,

Odette

[SoCalGal]

Hi Lisa,

Today was a fine day for me - I wish I could figure it out. Per my onc, I did skip the evening dose of xeloda so maybe that's why. Anyhow - day 14 so I feel as if I accomplished round#1. I am on 1250 of TYKERB and 2000mg's of xeloda in two divided doses.

I attended a support group at UCLA today and was inspired by a group of woman handling things with grace and dignity. And some of them (like you) are pretty young. Even at my old age of 49 1/2 I feel young:). I am coming to life, and starting to get ready to fight. It's been a hard few weeks, adjusting to the news of metastatic disease, but I'm still the same crazy me as I was "before". It is a lot to come to terms with but I can tell that I'm getting ready to really fight. What that means to me is I will be putting my health and well being ahead of everything and everyone else. If ever there was a time to do that, this is it. Although reluctant to go back to "cancer world" I am there and will do whatever it takes to try and survive. Next week I'm getting a 2nd opinion onc and will also see an alternative medicine guy both at ucla and also my regular chinese medicine doc. Told my boss today not to expect a lot of production, and that I will be all about me for a few weeks. I was finally brave enough to get a copy of my PET/ct report - that was hard to read, but I did it.

I'm lucky for a strong group of family and friends. I am determined to see my youngest off to college this fall. AND I hope to be posting for many years to come. Thanks for staying in touch. Flori

[SoCalGal]

I forgot to mention that I sent an email to the administrator to request a forum or site or group or whatever it would be called for people on TYKERB. I see messages on the main board and also on our thread so we'll see what happens!

[Sherryg683]

Odette, I see you are currently NED..why would you have to take Xeloda with the Tykerb. Can't you just take it off label by itself. I took Xeloda and it was the pitts and isn't it prescribed only for active cancer. If my only choice was to take Tykerb with Xeloda, I'd just have to pass..sherryg683

[SoCalGal]

Odette,

Someone in my support group was/is NED and on xeloda for a year to maintain status of NED. I'm guessing that since you're newly NED that's why the xeloda. Okay - hope you are well today. White light and all that....Flori

[Odette]

Hi Sherry, Flori,

Yes, that was exactly my question, could not I just take the Tykerb w/o the Xeloda?
I even concidered cheating about it... hmm.
Here are a couple of relevant details: I had preoperative A/C (4 cycles) and then Taxotere and Herceptin. Unfortunately I had progression already while on the Tax/ Herceptin (I could feel new lump(s) under the arm ugh) confirmed by ultrasound. 16/17 positive lymph nodes at operation.

Then I had the mastectomy and within 6 weeks my neck was hurting and my throat felt it was closing because of this rapidly growing lump in the lymph node.
This was zapped out by radiation. My oncologist discontinued the Herceptin, since it definitely had not been useful.

I was super scared.

I looked into all the alternative treatments that looked sensible.
I went to the Memorial Sloan Kettering to a young oncologist who believes that this may be helpful for me.
She recommends 4 or 6 cycles of Xeloda and a year of Tykerb.

I'm determined to tough it out if I possibly can.
Right now I'm super excited about the possibility of seeing my kids graduate: son 2008 college, daughter in 2010 college, other daughter 2011 grad school.
I even looked at the Gonzalez Protocol, which sounds promising to me but prohibitively expensive at this time.

Thank you for caring!
I wish I had found this group earlier, I had felt so alone with my crazy agressive BC, but I see I'm definitely not alone and hope to help each other through these hard times!

Love and prayers,

Odette

[Odette]

Sorry, I did not even ask: How are you feeling Flori? This is your week off isn't it? Did you see the alternative practicioner if so how did you like that?

Sherry, I'll be coming to you for advice if I will ever get to start this combo.

Odette

[SoCalGal]

Hi Odette,

You are not alone! Thanks for asking how I'm feeling. It's been more down than up - I was hoping that once I stopped the xeloda I'd feel much better but yesterday I was in bed all day with a bad, bad headache and nausea. Today I am not as bad, but finally took my temperature and have a very low grade 99. I think that when I first started herceptin I ran a low grade fever so tomorrow is my onc check up and I'll go in armed with my list of questions. I have had so much in the way of cancer treatment, so many bad side effects and so many times the chemo wasn't working then something would start working since my recurrance in 2002 that I believe in miracles, but at the same time I am tired of it all.

I can relate to what you said. I am also determined to get my youngest daughter off to college this fall. My son is a freshman, so like you, I'd like to see both of them graduate!

I've been through a horrible divorce this past two years, I'm pretty sure my ex walking out on me and the kids is the main reason my immune system broke down. None of us saw his mental illness coming and it's been a tough year and a half for the kids especially to be abandoned like that. Just by the parent they thought would always be there for them. We have survived the divorce, it's been like a death since he has no contact with any of us, nor does he financially contribute. Maybe someday they will make their peace with their father. Who knows.

BUT I am blessed and have a very loving man in my life. Someone I knew in High School and ran into after 30 years at the market. See, miracles do happen:).

Women in our situation have a lot of strength so use that to stay positive and remain hopeful (I am talking to myself right now, too). Without a doubt, the fear factor is worse than any cancer or side effect.

Today I am going to try the tykerb at night and see if I can sleep through all the creepy feelings. May god bless us all with strength and courage and keep our children happy and safe. I, too am glad to have found this website, and this supportive on-line community of fierce warrior women!
--Flori

[Muldoonmom]

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

[hutchibk]

I go in to do my paperwork tomorrow, and the doc indicated that I might be able to pick it up and start as early as Friday or Monday... That might be a record based on what I have read here!

He said that I will be on Tykerb everyday and Xeloda 2 wks on and 1 week off. He also said he would prescribe Zofran for the nausea. Is it the kind of nausea like adriamyacin/taxotere/cytoxan nausea? Or is it more of a queasiness? Does it last all day, or only for a little while after taking it. Is the nausea from the Tykerb or the Xeloda or both?

Thanks for chronicling so far how it is going for you! It is a huge help for me.
Can't wait to hear how it goes with Herceptin also in the mix...

Hold on girls.... here we go!

[Odette]

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]

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]

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!

[Luvcr]

Hi I am taking Tykerb and Herceptin. I take my Tykerb at 10:30pm every night on time. It has been 6 weeks now and things are going better. No diarrhea for a week now and no Immodium. Some slight hand peeling and a little more tired but thats it. I was on Herceptin for 8 1/2 years with stable bone mets. I now have a mediastinal lymph node which is why they started the tykerb. Cheryl

[Odette]

Hi Cheryl,

taking it every night at 10:30 sounds great! And I'm glad that you have very minor side effects. I understand Tykerb and Herceptin have a synergistic effect. They'll knock the socks off those nodes in no time!
I'm taking Tykerb together with Xeloda so I have to take the Xeloda with food (dinner) and most of the time it is quite late by the time I get myself to take the Tykerb - like today at 2 am....

It even happened maybe twice (in five weeks) that I could not get myself to take it at night, left it to next morning, but then I switched back to evening, I can handle it somehow better when I'm asleep. (This way I left out a day or so, but I don't feel like I have to be perfect.)

So far I had manageable side effects, but now the tiredness is hitting me, hope to recover during my week off the Xeloda!

Stay strong Cheryl!
Hugs and prayers,

Odette

[Luvcr]

Thanks for replying! I wish you the very best and hope this week off Xeloda give you some energy boost!