T/X combo has knocked the socks off me.

[Elizab]

The variation in dosages we are using is interesting to me.
I am taking 5 TYKERB a day (since day one). My Xeloda has been reduced several times because I am having a bad reaction in my feet -- this week I will start taking 1600 mg. a day. I didn't know the trial was only 200 mg a day - wow. I started with 2600 mg. of Xeloda a day. yuck.

I hope the acupuncture helps, Roz

[Roz]

Sorry Elizabeth, I meant to type 2000mgm daily.!! of Xeloda.

[Vanessa]

Has anyone stayed on 3 or 4 Tykerb per day. My doctor said that I may have to stop at 3 or 4, due to the severe diarrhea. I am also getting Abraxane and Herceptin on a weekly basis. I was dehydrated earlier this week and had to go in to my drs office to get a liter of IV fluids. I also felt much better after getting 5 mg of decadron with my chemo.

[Becca]

Vanessa, sorry you are having a rough time with the Tykerb. It is easy to get dehydrated with diarrhea. I took 5 Tykerb for several months, but it was rough on me. Now 4 Tykerb/day. My onco told me to use my judgement if I need to drop lower than 4. 1-3 times/month I take less. Last month on this thread you asked about dry lips,etc. The corners of my mouth and the inside feel irritated, especially with spicy or salty food or toothpaste. Wonder if anyone else has that problem? Hope you on better with the Tykerb soon.

[StephN]

Dear Vanessa -
Here is a link to a discussion on Acidophilus and how it helps with the extremely loose bowels.

http://her2support.org/vbulletin/sho...ht=acidophilus

I talked with Joanna last week and she says she still is on this same schedule and tolerating the Tykerb very well. Does not have a big problem with the runs - in fact needs some Metamucil! Wouldn't that be a switch?!

P.S. I wanted to ask if you are using BIOTENE toothpaste? It is milder, but also fights the germs and dry mouth as well. I have kept using it since all my chemos.

[Becca]

Steph, thanks for the tip to use Biotene toothpaste. I tried it--much easier on the inside of the mouth. I eat Activa, but will eat it Every day to see if it helps me.

I feel like I know you and so many others on this great site. I started following the posts about 20 months ago, but only started posting recently. The courage I see in the members here has given me strength to face the treatments, surgeries, pain, etc in the last 2 years. I read your posts (and many others) regularly to know what new challenges you are facing, or the advice and encouragement you give others. Thanks for the help you have given me through your postings. Becca

[Roz HUNTER]

Hi Becca,
I have been gradually upping my dose of both Tykerb and Xeloda. I have been upping my Tykerb a half tablet every 2 weeks. I am now on 4 and a half, and I am taking 2500mgm of Xeloda every second day and 2000 every other day. I have read where the Tykerb serum blood saturation (?) reaches its peak after 6-7 days. That's when I get the rash. I will stay on 4 and a half, for a month and try to manage the 2500mgm of Xeloda if I can. Otherwise I will go back to 200mgm

[Diana1993]

Can anyone tell me the cost of Tykerb in the U.S. It is not available in Canada and I don't qualify for the clinical trial. I received this news about 1/2 hour ago. Any suggestions would be appreciated.

[Becca]

Roz Hunter, sounds like you are doing well at close to a full dose of both T/X. Have you been on it since last Spring, and is it helping you?

I wonder if you or any other gals have a hard time facing those big orange pills? Thankfully they are helping me, but I have a time getting them down. They are not any bigger than other pills I take, so it must be a mental thing with me. I can only get 2 down in a row, then wait 10 min or so to take the rest. Sometimes I gag. Always glad to have that over each day. The xeloda is no problem for me to swallow.

[Janet Taylor]

My Tykerb cost is a $20 co-pay and Anthem pays $3063 for 150 pills.

[Diana1993]

I have this internal struggle going on. It has been suggested by my onc that I take Tykerb along with xeloda since learning herceptin has stopped working for me. The dose recommended for Tykerb is 1250mg, 5 pills a day. The cost for me if I go to the States where it is approved by FDA, is approx. $3600. I might be able to afford a year, but was wondering if there are any success stories with taking xeloda alone or maybe taking fewer Tykerb (i.e.half). Do you think taking some Tykerb would be better than not taking any?
Thanks,
Diana.

[Janet Taylor]

Diana the pharmacy that mails me my Tykerb and Xelado is called Pharma Care Specialty Pharmacy in Detroit, MI. The phone number is 1-800-571-9833. Ask for Peter; he is the one that answers all of my Tykerb questions.

[Elizab]

Diana, I think you might want to ask your onc that question about taking a smaller dose of Tykerb. As I read through the posts in "Herceptin/Tykerb" it sounds like some people are taking fewer than 2500 mg of Tykerb a day (mainly because they have difficulty tolerating it, I think). It may be a difficult question to answer definitively because the drug is so newly available. We are all on a learning curve here (our oncologists included) about dosage. All I know is that the Tykerb is the drug that focuses on Her2Neu. Xeloda is a generally used chemo, not just for people with Her2Neu.
There is also a support program called "Tykerb Cares." Perhaps you could call them and ask your question about a lower dose. You can google "Tykerb Cares" or the US phone number is 1-866-489-5372. I wish you luck in making a decision about this.
Elizabeth

[Roz]

Becca, I have been on Tykerb since 5th October,and was off it for a week on week 4. Started back on a reduced dose of 3, then 3 and a half, then 4 then 4 and a half. Onc wants me to have CT scan next week, but who wants to know before Christmas, I would rather go through to the New Year and have my scan 1st week in January. Will know then whether it is working or not!

[Elizab]

Diana, I think you might want to ask your onc that question about taking a smaller dose of Tykerb. As I read through the posts in "Herceptin/Tykerb" it sounds like some people are taking fewer than 2500 mg of Tykerb a day (mainly because they have difficulty tolerating it, I think). It may be a difficult question to answer definitively because the drug is so newly available. We are all on a learning curve here (our oncologists included) about dosage. All I know is that the Tykerb is the drug that focuses on Her2Neu. Xeloda is a generally used chemo, not just for people with Her2Neu.
There is also a support program called "Tykerb Cares." Perhaps you could call them and ask your question about a lower dose. You can google "Tykerb Cares" or the US phone number is 1-866-489-5372. I wish you luck in making a decision about this.
I took Xeloda alone several years ago, before I ever took Herceptin . I had taken Taxotere for several months, and then moved on to Xeloda.
Elizabeth

[Diana1993]

Thank you Elizabeth and Janet for your responses. I have one more CT scan on Monday (new improved machine) and if it picks up any measurable marker, I will be accepted in the clinical trial. Apparently all that is reported is scar tissue and "fuzzy" changes. I'm waiting for the Urologist to call re: insertion of a kidney stent. Here we go again. And of course I don't know if the shut down of the nuculer (sp?) plant will halt my CT scan. I have been on this journey since 1993 and I have learned most plans work out for a reason. It is amazing; four years ago, I turned down second round of chemo and then two years later said yes to Taxotere and Herceptin. It wasn't all that bad so I will join the "fun run" gang and come here and look up advice on how to deal with rashes and.....................(this proves I read almost all threads) So for now it is a wait and see and in the meantime I can get my Christmas decorations up and enjoy the rich food, it may be the last for awhile. I will use any excuse to eat goodies.
Diana.