kris1214

Hi Mary and Jeff,

Thanks for responding.

He was in the hospital the middle of April for severe diarrhea, temp. of 102.9 and extremely low white blood counts. They said it was solely due to the high dose of the Xeloda he was on. They have cut the Xeloda by 50% and the Taxol and Carboplatin by 25%.

I don’t know if I have mentioned this before but Dr. Saab has said that the cancer can even grow up to 20% for this trial (trial at Ohio State) to be considered “effective.” They said they hope for it to stay stable instead of grow obviously, but I was shocked that it could grow and they still would consider it “working”

Thanks for the input.
Kris

Thanks Jeff and everyone – I am going to mention the Clonazepam on Thursday to the Dr. and see what he says. Our family Dr. (friend of ours) said for him to try a xanax but it put him right to sleep.

I have restless leg syndrome myself so I can only imagine how it is driving him (and some of you out there) nuts to feel it kinda in his whole body. He says it’s not too bad laying down at night, it’s when he gets up in the morning and during the day is when it starts.

Thanks again.
Kris

Hi Jeff, He doesn’t have a port – it is really strange. He says he definelty feels “something is going on” – of course, we hope it’s the chemo killing cancer cells! Thank you for trying to figure this out for us! Only time will tell – he gets a scan in the beginning of May to see if these two cycles of chemo have done anything.

Keep being the inspiration that you are!!
Kris

Hi Jeff, Glad to hear you tolerated the Xeloda much better by cutting the dosage. That’s good to know. Hope the same happens for my husband.

You are such an inspiration to so many of us on this board!!

Take care.
Kris

Jules, thanks for the suggestions. Where is your Dad being treated at and who was his surgeon?

JeffG – I am so amazed by you – I tell my husband about you a lot and what you have gone though and are going through and the fact that you were diagnosed 8 years again is so inspiring. Thank you –

Mary – They did give my husband Ativan – (I think that’s what it is along with the Companzine) They say it’s a mild sedative plus helps with nausea in chemo patients. I know they gave him Zofran at the hospital before the began chemo. I will get some of that too. He seems to get nauseated in the early evenings. He did eat better yesterday and actually ate two small bowls of potato soup today for lunch. He just looks weak and tired and I have never in my life seen him look weak and tired before. Thanks for all your advice.

Have a question for everyone doing chemo – does your body learn to tolerate the chemo better after the first time or should I expect him to be like this every week? Monday seemed to be his worst day. Is that what I should expect every week? I didn’t know if your body kinda gets used to the chemo or not?

Thanks everyone,
Kris

Thank you Mary – I am trying to get him to eat but he is not interested. He had the chemo on Friday. Sat. and Sun. he was really, really, really tired……ate a little bit. He then got pretty nauseated all during the night last night. Not as bad this morning but couldn’t even eat a whole piece of toast. I have heard from one nurse that day 3 is the “bad” day and that is today but I have also heard that this can go on – (him feeling bad…) He gets chemo again on Fri. and I’m just worried he won’t be feeling good yet, then he has to start this all over again.

This is so hard seeing this young guy going through this. I want to say it’s just not fair, but we all know this isn’t fair!!!!!!!!!

Prayers to everyone,
Kris

Thank you Sara – do you have an experience with surgery at MD?