nervous, need advice

Hi all...

I have been on Gemzar Xeloda Herceptin for 6 months and done very well from a cancer point of view. Basically, right now my disease is stable. This combo pulled me back from the brink. When I went on it, I was told to get my affairs in order and consider hospice. I was homebound on oxygen unable to walk more than a few steps.

However, the toxicity is now getting to me. My counts are dropping consistently, I feel lousy most of the time and I am so so tired despite weekly aranesp and neupogen. My onc thinks it is time to lower the dose.

I know I am tired of feeling so lousy and agree it is time to lower the dose but I am very nervous. I have a good onc who will watch me closely so I know he will catch progression as quickly as possible. But I was SO sick SO quickly earlier in the year that I am frightened.

Anybody have any experience with this?

Thanks in advance,
Rosie

Rosie,

You may have already considered this, but what about the blood test that is mentioned in the above post from Joe. The CellSearch system? Could this be used to check for disease progression, if your Onc lowers the dosage for a bit? I think that the test is done monthly. It surely seems as though it would be easier to deal with than more scans and such.

Just a thought. It DOES sound as if your body needs a rest. It is miraculous that this combo "brought you back from the brink". I praise your courage.

Hope and Wellness to you.

Cindi.

The xeloda pushed me over the brink. So my Dr. gave me a break from all chemo and I took only herceptin and zometa for the summer. It felt so wonderful to be chemo free and get my strenght back. But yes there was some progression while I was off and now I am back on but I am strong and ready to fight again. The break was well worth it. Patty H

Rosie,
Just sending out wishes and support. I hope you feel better soon.
Hugs,
Janelle

Hi Rosie,
I think I have responded to your questions before about gemzar...basically, it knocked me flat last summer and my onc switched me to every other wk instead of wkly. Then it stopped working in Aug, so I'm now on xeloda. I had a bad reaction initially so my onc cut my dose in half. I am definitely feeling better now, though I can hardly remember what normal is! However, I have a swollen node that is slowly reducing in size and skin mets that are improving, and they are a real indicator of effectiveness. If you trust your onc (and it sounds like you do), try what he (or she) recommends. It's important to control the cancer but it's also important to feel good and enjoy your life! Let us know what you decide to do and how you're doing...we all care!
Best wishes,
Jackie

Well, I think the decision about the dosing for me is going to be made by my body. After my last chemo and despite BIG doses of aranesp, I am severely anemic. ( But yeehaw my markers are normal though I don't completely trust them ).

So I've asked 3 oncs as to how they would reduce the dose. The first said he would reduce both the gemzar and the xeloda but not change the interval, the second said she would reduce the gemzar but shorten the xeloda interval, and my onc says he would reduce the gemzar only. So I guess that means no one knows what is best and it will be up to me.....Sigh

( I sure am tired of being tired and running to the john though. It will be nice to feel better )

Thanks for all your kind responses and support.

Rosie

Dear Rosie,
Have you considered Neupogen and eprex for your blood counts, it's tyhe only way my wife can take full-dose chemo.
Take care,
Al