Tykerb/Xeloda continue to provide miracles

[Esther]

I just finished my second cycle of Tykerb/Xeloda, so it's been about 6 weeks since I began this treatment plan.

After the first cycle my CA 27-29 showed a huge tumble down to 90, and after this second cycle, my CA 27-29 has again dropped to 58.

My liver functions are normal, and my bones continue to do well, no pain at all. We had figured with Dr. Pegram's input that the spike in my CA 27-29 was due to my brain lesions. If that is so, perhaps this means that my brain lesions are responding well to the combination of SRS, and new therapy.

I will be getting my next MRI sometime in Mid June, so I am now excited to see what those results are.

So far Tykerb/ Xeloda is an easy and tolerable treatment plan to be on, so I hope that it continues to do well for me for a long time. As always, I react differently than everyone else....I don't have the runs, but the opposite situation!!! My complexion has completely cleared up, so I am now so happy about that!

Yay for Tykerb/Xeloda!!!!

[chrisy]

Wow Esther, that is terrific news! Keep it coming!

[hutchibk]

Yay Esther! and yeah Ty/Xel!! Me too with the good results. After only my first 2 weeks on Ty/Xel my tumor markers dropped from 42 to 37.6. I think that is awesome! We go back next Weds to do MRI of the brain to see how the three little spots there are doing... if shrinking, then yippee! If stable, then we will do SRS. If still growing, I will go to MDAnderson to see what their thoughts are...

Esther, which SRS did you do? When did you do it? Please tell me your details if you would... I think my local rads onc uses 3-D CRT (conformal radiotherapy), but I don't know for sure, and I don't think I really know what that means, hahaha.

Thanks!

[Adriana Mangus]

Esther: Im so happy for you...Thank you for sharing. Perhaps that will be my next treatment plan. See onc on June 5; hope navelbine+herceptin is working. Pray for me.. (Second time around)

Celebrate....tonite?

[Lala]

I am so Happy for you Esther and Brenda. Count me in too!
My recent scans show that I am responding to the Tykerb and Xeloda!
My tumor markers have plummeted and continue to fall after 2 months.
I think this line has been the best for me so far in terms of fast response.

I am thankful for the Tykerb!

[Carolyns]

Esther,

That is GREAT news! Thank you for sharing.

Love, Hope, and Peace,

Carolyns

[Lolly]

Yeah EVERYBODY! We all seem to be experiencing the miracle :) My onc doesn't use tumor markers anymore as they no longer showed any change in response to obvious progression, so since my mets are quite conviently located where we can feel them, we go by that backed by scans when appropriate. EVERYTHING'S SHRINKING!

<3 Lolly

[Carolyns]

Lolly,

That is GREAT news! Have a fantastic weekend!

Love, Hope, and Peace,

Carolyns

[Shell]

Esther-

What fantastic news - always ironic about the side-affects, too... Continued success with things,

Regards,

[doh2pa]

Esther,

So glad to hear you are doing well. Today I finish my first round of Xeloda and these past two weeks have been a breeze. I won't get blood work till next week and scans in July so I am very encouraged to hear it working so well for you. Keep us posted on your progress.

Donna

[tousled1]

Glad that the Tykerb/Xeloda is working for everyone. This is really encouraging for the rest of us.

[Aliceann]

Esther, I too am taking Tykerb/Xeloda. Do you take a break from the Tykerb after 21 days? If so, how long? My oncologist is just learning about this new drug and doesn't seem sure about how to have me to take it. I would appreciate anything you could tell me about your experience with these two drugs.

[Lolly]

Alice, I'm on Tykerb/Avastin. The Avastin is weekly, and the Tykerb is daily, every day, no breaks.

I believe that's how Tykerb was approved by the FDA, as a daily dose; ususally the Xeloda is 3 weeks on, one week off, or whatever schedule your onc thinks is appropriate for your level of tolerance, but you continue to take the daily Tykerb on your week off Xeloda.

<3 Lolly

[SoCalGal]

I think that most people take (5) tykerb a day, which was the dosing on the study. I take them on an empty stomach, first thing in the morning. You must wait one hour to eat. OR you can take tykerb 2 hours past your last meal, and then again wait one hour to eat. The pills are 250 mg each. My onc was clueless at first, saying to divide up the pills all day long which would have been a DISASTER because that creates toxicity...glad to be able to straighten him out on the subject. haha.

Xeloda is twice a day - on a FULL stomache. Dosing varies, but in the study they were on 2000 mg total, which is (4) pills a day - 2 in the am and 2 in the pm for TWO WEEKS ON and one week off. Tykerb is daily, no breaks.

I've been on the above regime starting April, and side effects do subside after about 6 weeks.

GOOD LUCK! Flori

[Believe51]

Believe it or not, this post is exactly what my Dear Hubby & Myself needed today. His treatment has stopped working and his numbers are rising alarmingly fast. Hopefully, help is on the way. Thanks girls, we can always count on you all!! ..Waiting For A Miracle & Wearing My Green Shoes!!...>Believe51..(Marie G)

[Esther]

Aliceann:

I take the Tykerb 3 weeks on, then 1 week break. I had alot of breakouts and rash with the 5 pill a day regimen, so on my own (oh oh!!) cut it back to 3 pills a day.

I take Xeloda 2 pills twice a day. I was on a 2 weeks on, one week off, but my onc just changed me to one week on, one week off.

Even with this downsized schedule I continue to see marvelous results. When I owned to my onc that I had reduced the dosage, he said perhaps I only needed 3 pills of the Tykerb regimen.

[SoCalGal]

Hi Esther,

Due to side effects, my onc cut me back from 5 pills to 4 pills a day, which left me feeling MUCH better. I just got my marker results, and in the 2 weeks that I've been cut, my cea and ca-15 started to climb again - cea up to 10 from 6 and ca-15 up to 32 from 29. It's not that the numbers are so high, it's that they came slamming down and were stable 2 weeks ago and now have gone up. Sigh... (Am also doing xeloda for 14 days on and 7 days off.)

I just wanted to mention my results. I am discouraged by the rise in markers.

--Flori

[GemmaG]

Hello everybody,
I've started Tykerb/Xeloda about a week ago. 5 Tykerb/day and 2Xeloda/day. I had to stop taking them because of the side effects. Skin break out, rash, severe diarrhea, headache, hand and foot syndrome, mouth sores, nausea, etc.
I saw my oncologist this morning and told her that I stop taking the meds. She told me to reduce it to 3 pills a day. I'm so scared to take the pills again. I don't know what to do. I'm so confused :-(

july 2003- lumpectomy right breast stage2. 6 chemo adriamycin/cytoxin and 38 radiation in 2004
tamoxifen for a year
recurrence in 2006-same breast with both lungs mets 6 chemo Taxol/Herceptin....Herceptin for one year
May 2007- pea size tumor in underarm that's why doc switched me on Tykerb/Xeloda

[SoCalGal]

Hi GemmaG,

My side effects calmed WAY down after the first few weeks. I had a cold after the first round, had fever felt like crap and wound up waiting about 10 days to start up on xeloda. I think I was down to 3 tykerb for those days, too. I also messed around with the dosing, per my doc.

I did not have hand and foot probs, but had BAD headaches and diarrhea, nausea and of course, anxiety. Just the other day my onc told me that in practice (as opposed to "in clinical trial") many docs are cutting patients down to 4 pills and in some cases 3 pills (like you).

I bought sea sickness bands, they helped me alot -cheap fix for nausea. I took imodium and also ativan for nausea and anxiety. Ultimately I have switched my diet - dairy free, gluten free and I think that has helped me very much. My symptoms are lessened but I am also on a reduced dose - 4 pills a day. I am taking 2 xeloda, twice a day - 14 days on, 7 days off.

When I first started, I decided that even if I had to stay home all day, everyday I would do whatever it took to give the chemo a chance. That really took pressure off of me to accomplish anything.

Hope this helps you. Best, Flori

[JEANB]

Hi you guys, I just wanted to share my good news with the Tykerb/Xeloda drug combo. A little history ...I became stage 4 last July with extensive liver mets over 70%..My tumor marker Ca 27/29 was 1149,,my bile duct was completely obstructed and I became jaundice, had terrible itching, lost weight, etc..this occurred rapidly, over a 3 week period. At first, my bilirubin was too high to get chemo, topped out at 9.3. We tried liver stents several times and I even had to have a drainage tube inserted into my gallbladder to drain out bile. I carried around a drain bag for 3 months.This worked and I was able to get Gemzar/Herceptin which eventually brought my markers down to 80. My markers started to increase in March and went up to 123 at last check 5 weeks ago.
I started Tykerb (5 pills 1250) and Xeloda (7 pills 3500mg) just 4 weeks ago. My tumor marker has dropped 50 points..I'm at 73 now, lower than ever.I'm so happy with this drug combo!! I did have some severe dryness however, (face peeling and so thirsty) a slight rash and I got the diarrhea which is unusual for me. My doc lowered my Tykerb by one pill so we will see how that goes.
Rock on Tykerb..love these results!!

JB

[hutchibk]

My TMs have dropped from 45.1 to 37.5 to 17.5 after only 6 weeks on Xeloda and 4.5 weeks on Tykerb!! And my brain MRI is stable with one of the bigger spots looking less enhanced...

I am loving it too!

[GemmaG]

Hi Flori,
Thanks for the info. I'm so glad my friend found this support group for me. I'm learning a lot from it.
My rash are clearing up a little but still itch terribly and my pimples are clearing but getting new ones :-( my skin is so dry!
I'm still afraid to take the pills. I just started at my job three months ago. I was on disablity for a year. I had to go back to work for health benefits for me and my two little kids, aged 9 and 8. I'm a single mom. I've been traumatized with all these awful side effects for the past 4 years. I was so happy with Herceptin for a year because no side effects and my tumors were shrinking and decreasing. But the last CT scan showed new tumor (armpit) and tumors multiplying (both lungs).
I know my onc and her nurse practitioner will nag me about this.
You probably are as you are reading this :-(

Hugs,
GemmaG, 39

[Odette]

Hi GemmaG,

It sounds very hard, having two young kids, working and then the crazy tumors are acting up!
Don't mean to nag I'm just wondering were you able to take the lowered dose? There is a great variation how much people are taking. The Tykerb/Xeloda seems to be terrific in holding the mets in check. Hope pray and trust it works for you!

I'm having a hard time taking all my pills... sometimes I end up not taking my vitamins because I get so tired of it.

Hope you feel well, best wishes and stay strong prayers are going your way,

Odette

[hutchibk]

Me too Odette... there are days when I can't swallow one more pill and I forego the vitamins as well. Especially with fairly precise timing of dosing and eating, etc. If I get just a little off my schedule, something has to give, and it ends up being the vits from time to time...And to top it all off, I have a week of antibiotics to add to the mix for a sinus infection...

[Odette]

Hi Brenda,

do you want to try the chatroom? It is pretty cool!