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Break from treatment

MAE66
Posts: 70
Joined: Nov 2009

We are on break from treatment, and I go from being almost giddy with the thought of the holidays with no chemo, to scared that we aren’t doing enough to fight this thing. I am in the process of getting things lined up for a follow up endoscopy and a second opinion since we are at the point where we have to figure out what to do next. Paul completed the six rounds of Taxotere, Cisplatin and 5FU and the 5 weeks of radiation. All the tests show that there is a good response to this treatment. The Dr. felt that he had received 80-90% of the benefit from this regime and since it had been so hard on him, it would not be of much benefit to continue it. We were given a couple of options; Start Xeloda, or get a second opinion and than figure out what to do. We were told to wait 6 to 8 weeks post radiation for the endoscopy which would put us right at the end of Dec., giving us a month off.

Does anyone have any experience with taking Xeloda or any advise in prepping for the second opinion?

Thanks,
Susan

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Hi Susan,
We have some experience with Xeloda. My husband Charlie was dx with stage iv EC in March. Surgery and radiation are not options. Went through 4 rounds of chemo (Taxotere, Cisplatin, and 5-FU.) Each round was 120 continuous hours administered in the hospital. After the 2nd round we had another PET scan. Everything was inactive so he is considered in remission. Charlie's last round of chemo was in July. The dr suggested Xeloda to try to keep him in remission. So we started it in Aug. He is just about finished with his 5th cycle. (He is on the meds (oral) for 2 weeks and off 1 week.) We started with 2 pills in the morning and 1 pill in the evening.....each pill is 500 mg. He did that for 1 cycle. Had no side effects and the dr's always want to see side effects (that way they know it is doing it's job) so we increased it to 2 pills in the morning and 2 pills in the evening. We did that for about 2 1/2 cycles. He was still doing good (just tired) so the dr again increased the dose. We finished up the 4th cycle with 3 pills in the morning and 3 pills in the evening and continued that dose for the 5th and now the 6th cycle. Charlie has a little bit of diarrhea and cracks in the corner of mouth. Those were the kind of side effects the dr was looking for....nothing to really change your quality of life. So we will probably stick with this dose. We had another PET in Sept and everything was the same as the one in May. Good news....we thank GOD. We go for another one in a couple of weeks and we are praying things are the same.

We also started Herceptin treatment. Herceptin has been used to prevent reoccurances of many types of cancer and recently has been shown to increase the survivability of patients with gastric cancers. Your tumor must be HER-2 positive. It is also difficult to get it covered by insurance. We are having an issue with that and the dr's office is working with the drug co's foundation to have them cover it. Charlie's first treatment was over $9000 and then second one was over $7000....so it is very expensive.

That's all the info I have......the PET in December will tell us if the Xeloda is working.

Will keep you and Paul (as well as everyone on this site) in our prayers.
Jane

MAE66
Posts: 70
Joined: Nov 2009

William, your point is well taken. I will enjoy the holidays more if we know where we stand and have a plan rather than just “marking time”. This of course involves getting the second opinion, which is in the works.

It sounds like Charlie and Paul have had the same treatment with a good result. The word remission has not come up, we are just told there is no further spread and lymph nodes are shrinking. All the other organs have been clear.

I have a question that I am almost embarrassed to ask. How do you know if a tumor is HER 2 positive? Is this something you find out with a biopsy? Paul never had a staging endoscopy. Since the cancer was first found in the retroperitoneal cavity they already knew it had spread and confirmed it was esophageal from an endoscopy that was done 2 weeks prior. As I write this, I am painfully aware of how many questions I still have. Having a second opinion can’t happen soon enough.

Thank you,
Susan

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Susan
Don't be embarrassed.....not even sure if I know the answer. Charlie didn't have surgery so the tumor was not tested during surgery.....he had an endoscopy so I assume they took a piece of the tumor at that time???? The endoscopy was in March and I don't believe they tested the tumor until Sept....when the dr started looking into Herceptin. To tell you the truth I never thought about it...the dr just said it was Her-2 positive and when I saw something come through from the insurance co from a lab, I assumed it was when they tested it.
When we got the results of his PET, (after the 2 rounds of chemo) the dr said everything was inactive and he definitely used the word remission. However, he does remind us from time to time he cannot cure Charlie....remission is the best we can hope for. Of course, now all we think about is how long will the remission last.
Take care....continue to let us know how Paul is doing..and stay strong.
Jane

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