No more Ixempra to me

Kavy · 08-11-2009, 01:14 AM

Hi, my friends,

After being on Ixempra/Herceptin since October last year (12 treatments), I had progression on my lung mets, just when my body was getting used to the combo, and the side effects were getting better, even though the neuropathy was getting worse. According to my nurse, I was the only one still on Ixempra, everybody else gave up because of the side effects, so the doctors were keeping an eye on me.
I will be starting Tykerb/Xeloda as soon as I receive the drugs. I am worried about this combo, because I had Xeloda before with Herceptin for 3 months, and it did not work for me, the side effects were very strong as well. I wonder how it is going to be with the added Tykerb, besides, after being on Ixempra for so long and 4 years of different chemo/Herceptin, my body is not the same, I feel tired, I move slowly, I have short of breath lately, I do not have the same energy that I had when I took Xeloda before, and my feet are already very dry and numb from Ixempra. I wonder how it is going to be this time.
I need your prayers, wonderful people, for this combo to work and for the side effects to be doable. I need your experience with this combo as well.
Thank you.
God bless you all.
Kavy.

Pam P · 08-11-2009, 05:03 AM

Kavy - I hear the anxiety in your writing about changing chemos. I understand the feeling very well. Each time I have to start a new combo I fear what the side effects are going to do to me. I have not had ixempra, but from what I read on this site it's not an easy one (like any are!) so you have done well to manage it for almost a year. I was on xeloda/herceptin for about 3 yrs, then xeloda/tykerb for a few months. I did have the hand/foot problem, sometimes very painful, but all in all I felt great otherwise on this combo. I didn't notice any difference in s/e switching from the x/herc. to x/tykerb. When my onc. reduced the dose of xeloda my feet were much better. I've heard of people using some henna treatment on their feet when on xeloda which I didn't know about when I was on it. If I was to go back on xeloda I'd check that out. Google it. Also maybe xeloda will be easier on you this time - or at least easier than the ixempra and you'll be able to gain back some of the stamina that you wrote is compromised. Let me know how the new combo is working for you. I hope it goes super and pushes the progression back to remission.

jones7676 · 08-11-2009, 07:26 AM

I understand your anxiety about changes, but I will hope and pray that you will tolerate it well and it will work.

ElaineM · 08-11-2009, 11:37 AM

Good luck with your change in treatment. I have my fingers crossed that it will work for you.

vickie h · 08-11-2009, 02:18 PM

Wow! It's amazing that you could be on Ixempra that long with good results and few se's. I had to stop after 2 treatments due to progression. I am crossing my fingers and throwing in some prayers for your next treatment.
Love, Vickie

Mary Anne in TX · 08-11-2009, 02:21 PM

Hey Kavy!
I want to add my best wishes and prayers to a good ride with your new treatment! ma

Believe51 · 08-11-2009, 07:01 PM

Kavy, I am so sorry about the progression. I think of you all the time and prayers for your continued strength. I know those feelings of needing to start another regime, the anxiety and sadness of it all. Remember that this is not the same combo as before and maybe those Xeloda side effects will not be so severe. Either way Sweetheart, you did 12 cycles of Ixempra and although your body is beat up, I think the next regime has to be better. Keep working on your nutrition, we all know how important that is. You are such a large part of my thoughts, especially since beginning this regime. Please know that you are right here in my heart and I will be following the new twists to your journey. The only thing I wonder about is that shortness of breath, please keep me updated on that.

I wish I could help you somehow but all I can do is say, "I know Darling, I know." I send you love and smiles tonight as I leave this post.....I have alot of praying to do.>>Believe51

Joan M · 08-12-2009, 08:31 AM

Kavy,

You are in my prayers for the Xeloda/Tykerb combo to knock out those mets.

Joan

yankeebikachic · 08-12-2009, 12:08 PM

Kavy, Maybe take a short break, rest and go in with a good attitude with the Xeloda. I know the side effects are not easy, but there are so many good outcomes with X! Maybe you could try a lower dose? And maybe you will find after all this time on I, that X is not so bad!!

Hang in there! Beth

Kavy · 08-15-2009, 12:29 PM

Thank you all for your prayers, good wishes and for sharing your experience with me.
Today is my 5th day since I started this combo, and so far so good. No nausea or vomiting, no diahrrea, no tiredness (felt tired the first two days), and hands and feet are OK so far, but I am already thinking about getting henna, because I also read that it helps to minimize the hand and foot syndrome.
Marie, I have not had short of breath or cough since the second day I started this treatment, what makes me believe that it was mets related, not Ixempra side effects, but I will keep you updated.
Wow, Pam, 3 years on Xeloda, that is amasing. I am so happy for you. Xeloda was almost your wonder drug, and after a while, it might work for you again . I hope it will do the same for me.
My regime is daily Tykerb (5 pills on a empty stomach), and Xeloda (2 pills after breakfast, 2 after dinner during the week, but weekends off), before I had Xeloda 2 weeks on, 1 week off. Have any of you heard about Xeloda off on the weekends only?
Marie, how is Ed doing? Know that you both are in my daily prayers, and so are all my dear sisters on this site.
Thank you all for your help.
God bless all of you.
Have a wonderful weekend.
KarlaV.