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

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!

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.

Still waiting for Tykerb
 

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

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

requested TYKERB forum/group/site
 

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!

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

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

NED and Tykerb Xeloda
 

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

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

tykerb blues
 

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

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

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!

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

side effects - details
 

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

I'm so glad
 

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

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

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