Any input on the Tykerb trial is greatly appreciated

[cathy34]

Hi to all,
It's been a while since I've posted. My onc. is submitting my paperwork to get into the Tykerb trial. We were waiting for the results from my echo to make sure my EF was greater than 50% and it was at 57%. Both me and my onc. are so excited that I will be in this trial.

Any advice or comments from anyone currently in this trial would be welcomed.

This site has given me so much info - it's wonderful!

[lindaw]

Dear Cathy

I have just started on the xeloda /lapatinib eap - about a week ago.I have skin mets and have been on many chemos. the pain of the skin mets has ceased and the 3 patches of open wounds are - i think- slowly reducing.
The xeloda I have been on before and it gives me habd ./foot thing quiet severely -but this can be reduced.
Good luck and any other questions I will try to answer - SandY H has been on for a while and Irene from Tampa and Dace.

Love
Lindaw

[Shell]

Cathy-

I was in the original trial w/ xeloda/tykerb - I received only xeloda at first, but it really kicked back my lung mets...eventually tykerb was added, but it had been about a 15 months on xeloda by that time, and side effects were getting bad for me, and I wasn't as stable as I was so I've since switched.

But, obviously you will want to keep your onc advised of ALL side effects - the diarrhea and the H/F syndrome are the biggies. www.xeloda.com has a great website, and they list lots of ideas. I only saw my doc every 6 or 12 weeks (remember, it's just pills you're taking), so I used the treatment diary to track my symptoms and to keep track that I was remembering to take all the pills! I would usually email my onc's nurse once a week or two with updates. I had cat scans and echo every 6 or 12 weeks.

When I added the tykerb to the mix, I was extremely fatigued for a few days, but eventually got back to my normal state of regular fatigue...

I used udder cream, and found that to be the best for me - good luck with things!!

When did you have the avastin and what did you have it with? I am having it now with doxil, and am curious how long you were on it and what scans showed during that period for you...

Take care,
Shell

[Steph]

cathy,


I have been on tykerb since the beginning of Aug., in the trial of tykerb/herceptin. When I was on just herceptin i didn't have any side affects so when I started this trial I feel that the side affects were due to the tykerb. I got diarrea bad for a couple of days. I then got a rash very badly on my face that looked like really bad acne...that too went away with time. I knew my body just had to adjust to this new drug and it pretty much did.

I too have 3 kids who are 9,7 and 3.

I wish you only the best
Steph

[Sandy H]

I have been on Xeloda/Tykerb since end of August. At first I had diarrhea and had the Xeloda decreased. My body did get use to it. My feet seem fine but my fingers are getting very numb and I am dropping everything. Its getting difficult to button my clothes, unable to get covers off jars and writing with a pen is getting bad. I am typing o.k. My thumb and finger on my right hand are peeling but only the top layer. I use lots of cream several times a day and everytime I get up in the night to go to bathroom or/and get a drink. I make sure I have gloves on when I got outside. Its cold here where I live. I hope this helps. hugs Sandy

[IRENE FROM TAMPA]

Hi Cathy

I started in the trial in late August and so far have remained stable (which is good) I will have my second set of scans since I began in January to see what is happening.

My onc started me off on the standard dosage of Tykerb daily (5 pills daily) and 3000 mg of the Xeloda. I developed very uncomfortable stomach issues at first so we decreased to 2650 mg of the Xeloda. My issue now is the hand/foot syndrome. The bottoms of my feet are very sensitive and my skin burns and my fingers tips are somewhat dumb (I also drop things like Sandy said) and they start to crack which is painful. Just apply lots of creams and if you should happen to have this.

These are all things you can live with, just a bit uncomfortable so you have to adjust your everyday life to it. But if the combo works for you, I would say it is worth it.

My blood levels are always good and have no other side effects. My hair is growing again so no hair loss with this combo. All in all its not too bad as chemos go. I feel good and am fortunate to have good energy.

Hope this has helped you but if you have any other questions please feel free to contact me.

Good luck to you and hope you can get started soon.

[Sandy H]

Irene you said you will have your second set of scans in January? Are you not getting scanned every 6 weeks? I will have my third set of scans the week of Christmas. These include bone, cat and muga. My hair is growing as well and I have had it trimmed. Am about ready to get it high lighted and I can hardly wait!! Hugs, Sandy

[cathy34]

Hi,
My onc. had to refer me to another onc. who is conducting the trial in this area. I live on Long Island, New York. I was on Xeloda in July 2005. It didn't work for me alone but I am hoping w/the addition of Tykerb that it will be a magic bullet. I had my CT of chest/Ab/pelvis this morning and I go for my PG test at 1:15 (the forgot to order this test last week when I had my blood draw). I should be able to pick up the meds this Friday the 8th. I was told that I will take 5 tykerb pills daily w/the Xeloda and I think the study coordinator said I will be taking 2000 mg of Xeloda daily. She did tell me that the other patient in the study had bad diareha and had to have her Xeloda reduced.
I will have CT scans and a ECHO every 6 weeks and see the study onc every 3 weeks for a physical and blood work. In addition to this, I will continue to see my onc. every weeks.
I am really excited and I hope this works because nothing else has...or maybe I shouldn't say that because I have been kept "stable"

[tousled1]

Cathy,

I don't have any experience with the Tykerb but I wish you nothing but good luck with it. From what I've read here from other women taking Tykerb it appears to be an excellent drug. I'll keep you in my prayers.