Xeloda for Lyle

Lylesmyprince

We saw the oncologist yesterday. She took Lyle's case to the Tumor Board and the group of radiologists and oncologists agreed that Xeloda pills would be the best course of treatment for Lyle due to his kidney failure and dialysis. They are concerned that the lack of kidney function will cause him to become too toxic. However, the amount of any drug will have to be reduced and monitored closely. As the oncologist was reviewing the side effects of Xeloda she became concerned, again, about the danger of giving the drugs to Lyle. Ugh!! I have some concerns about the drugs, too, but how difficult will it be for Lyle to continue to take a pill during his radiation treatment? We keep being told that it may become more difficult to swallow...and then they give him a pill? The doctor said the the Tumor Board was a bit stumped by Lyle...young (54), Healthy (except for kidney failure), and strong...yet his case is very complex and I feel like he is the ginney pig for this journey. We left, again, without a clear direction. The oncologist is going to call Mayo this morning and we will meet with her again on Monday. So...I feel like as they make their plan to kill the cancer in my husband...it continues to grow and get worse! I don't want to get started on this journey, on one hand, but on the other...we have a fighting chance because of the stage 3...but they are dragging their feet! (tears) I'm FRUSTRATED!!!

Susie

K_ann1015

I don't have words of wisdom, but
Hi Susie,
I don't have words of wisdom, but really know what you mean! My dad's process seemed so drawn out too...trouble with swallowing...but PA in NC told them "lets take care of these tests first" before even evaluating the problem!! (my dad had a follow up EKG--which turned out to be normal). The problem is that those results were not given to my parents for 5 WEEKS!!! and that was only after I got on the phone for hours! Then they moved up north for summer---had to find a general MD, many tests ordered, then referral to gen surgeon, then more tests, then referral to DUKE, more tests (and travel BACK south..). Unfortunately the whole process was at least 6 months...pure torture, I think!

So...hang in there...it sounds like the docs REALLY CARE to be looking into all this seriously. It's such a trade off--you want them to start treatment, but then scared of the possible side effects... On the positive side, your husband's case will help teach Dr's how to help patients like him in the future---so they don't have to re-invent the wheel each time.
Prayers for the best!
Kim

Tina Blondek

K_ann1015 said:

I don't have words of wisdom, but
Hi Susie,
I don't have words of wisdom, but really know what you mean! My dad's process seemed so drawn out too...trouble with swallowing...but PA in NC told them "lets take care of these tests first" before even evaluating the problem!! (my dad had a follow up EKG--which turned out to be normal). The problem is that those results were not given to my parents for 5 WEEKS!!! and that was only after I got on the phone for hours! Then they moved up north for summer---had to find a general MD, many tests ordered, then referral to gen surgeon, then more tests, then referral to DUKE, more tests (and travel BACK south..). Unfortunately the whole process was at least 6 months...pure torture, I think!

So...hang in there...it sounds like the docs REALLY CARE to be looking into all this seriously. It's such a trade off--you want them to start treatment, but then scared of the possible side effects... On the positive side, your husband's case will help teach Dr's how to help patients like him in the future---so they don't have to re-invent the wheel each time.
Prayers for the best!
Kim

You are not Alone!
Hi Susie and Lyle,
Your story sounds so familiar to so many of us here. Just try to take it one hour at a time. When my dad had radiation for his ec, it did not effect his swallowing too much. The thing that effected his swallowing was the scar tissue that had developed over the many years of suffering with acid reflux. My dad also took and his taking again Xeloda chemo.

With his ec we crushed the pills first and then added them to applesauce, pudding, or yogurt. This time with the liver cancer, the drs said not to crush or chew the xeloda. It is most effective in the whole form. It actually is great that your drs are taking precautions, and making sure everything is going to be alright before they start.

It is a very long, hard, process, but you have to remain positive, have a strong faith, have a great support group, which is us as well! I think it depends on where the tumor is in the esophagus as to if the radiation will effect the swallowing. My dad's tumor was down at the junction to his stomach.

Best of luck to you and Lyle. Prayers will continue to be said daily. Keep in touch.
Tina

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Lylesmyprince

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William
The time and thought that you put into this note touched my heart way deep down. Thank you! Thank you for the information, too. I will spend some time tonight looking things over. You are right about the doctors. She, the oncologist, saw that warning about the severe kidney disease and that is when she became more concerned. Lyle doesn't just have reduced kidney function...he has only about 5% if that. He is considered to have no function at all. Dialysis sustains life. William, did you and Loretta ever feel quiet towards God in your journey? I think Lyle and I have on our "tough skin" so everything doesn't hurt so much. I guess...if you have tough skin on so that nothing can get in to hurt you more...not much can get out either. We know God has made this journey before us and we know His perfect plan will continue on no matter the outcome of this journey...but our hearts are hurting...and Lyle is mad! He isn't just mad about having cancer...but mad that I have to go through this too. We both had lousy marriages before and have had a beautiful marriage and a true partnership for only 6 short years. We are young, 47 and 54, and love life together! So...we have found ourselves kind of quiet towards God. I guess I'm mad, too. I hurt because he is hurting. This whole situation is just...sad. I'm sad for others who have lost the ones that they love to this cancer...and celebrate with those who still have their lives and have fought the fight and won it so far! I'm sure I'm no different than anyone else when they first got the news...this is MY first time to experience anything like this. Thanks again.

Susie