(FOLFOX + Avastin) what to expect? ???????

luvmum

Hi everyone,

My mum was in the hospital after severe diarrhea from XELOX + Avastin treatment on 26 Nov 2010. She was in the hospital till X'mas eve! The onc was so worried and almost stopped all the chemo all together. However, he saw some improvement in her CEA and decided to give her another round of chemo treatment. He thought it was Xeloda that made her sick, therefore, this time he prescribed FOLFOX for her. The onc only gave her 50% of the standard dosage and will separate the infusion into 2 times.

She had the first half of FOLFOX + Avastin on 3rd Jan and she already started having mouth sore this morning and her thumbs are painful. With this regimen, what would my mum experience? Are there any precaution measures? If she has serious side-effects, the onc will not give her the second half of the treatment next Monday. =(

I also want to know if xeloda is the same as 5-fu? will they generate the same result? Does it hurt to install the port on her chest? She is using the line inserted in the vein of her neck when she was in the hospital last month for this round's infusion (46 hours). The onc said if it works well, then they will install a port for future infusions.

I would really appreciate your valuable information and sharing.
Please take good care and have a very healthy and happy 2011!
Lots of love from Dora

okthen

Hi Dora! Thought I would
Hi Dora! Thought I would bump you up and share a bit..
Jack had his port put in at the same time as his resection, so the pain from insertion probably wasn't his first concern, but he didn't complain about it. He's had it in since August and rarely mentions it.
Jack too had the mouth sores the first two treatments, his onc told him to take centrum silver with folic acid for the sores and he didnt have them after that. Be sure and ask your onc though before you have your mum start taking anything, just sharing what worked for him.
Best wishes for you and your mum,
Chriss

okthen

Hi Dora! Thought I would
dbl post...not fair ..I only pushed once

luvmum

okthen said:

Hi Dora! Thought I would
Hi Dora! Thought I would bump you up and share a bit..
Jack had his port put in at the same time as his resection, so the pain from insertion probably wasn't his first concern, but he didn't complain about it. He's had it in since August and rarely mentions it.
Jack too had the mouth sores the first two treatments, his onc told him to take centrum silver with folic acid for the sores and he didnt have them after that. Be sure and ask your onc though before you have your mum start taking anything, just sharing what worked for him.
Best wishes for you and your mum,
Chriss

Hi Chriss
Thank you so much for your info. I will ask the onc next Monday before her second half of her 2nd FOLFOX treatment. She was ok yesterday after removed the pump, but she looks very tired today. She told me her stomach is not feeling well and she starts having some symptoms of diarrhea.
Did Jack sleep a lot after the infusion?
Thanks again and best wishes to you and Jack too!
Dora

okthen

luvmum said:

Hi Chriss
Thank you so much for your info. I will ask the onc next Monday before her second half of her 2nd FOLFOX treatment. She was ok yesterday after removed the pump, but she looks very tired today. She told me her stomach is not feeling well and she starts having some symptoms of diarrhea.
Did Jack sleep a lot after the infusion?
Thanks again and best wishes to you and Jack too!
Dora

He did feel very tired and
He did feel very tired and looked exhausted. He did take compazine for nausea, but had constipation instead of diarrhea.
He also had splotches on his face...doc said was from the oxal. He only had about 20 min of his infusion yesterday before they stopped it due to a reaction, and he has a red mark above his eyebrow and is constipated. Strong stuff that oxal!
Best wishes to you both also! Your mum is so lucky to have you!
Chriss

Fb489

Xelox
My hubby had severe diahrea and was hospitalize when he received his
XELOX treatment. His doctor at that time stop the XELOX and
Started him on a reduce does of Xeloda only one week on, one week off
and adding Avastin every three weeks.
So far He has been doing well on this regiment.
Discuss this option with your ONC.

luvmum

Fb489 said:

Xelox
My hubby had severe diahrea and was hospitalize when he received his
XELOX treatment. His doctor at that time stop the XELOX and
Started him on a reduce does of Xeloda only one week on, one week off
and adding Avastin every three weeks.
So far He has been doing well on this regiment.
Discuss this option with your ONC.

Thank you very much.
I will definitely ask my mum's onc next time.
Have a good weekend!
Dora

PhillieG

Hi Dora
It's hard to say what your Mom can expect since we all react differently. When I was first dx almost 7 years ago (WOW, time flies even if you're NOT having fun all the time!) I started with FOLFOX and Avastin. Avastin was just approved for use so I only did 5 of the 6 months of chemo with it since it wasn't available the first month.

I did not have a too much trouble with side effects. There was the sensitivity to cold and some mouth sores at first. There is a thing called Magic Mouthwash that you need a prescription for that helped with the sores. I did not have them the entire time I was on that chemo. The oxyplatin did cause the sensitivity to cold and that stunk since I love ice cream. I just ate less of it and used a very small spoon. I have no experience with xeloda. I would HIGHLY recommend having a port installed for the chemo. Hands down it's the way to go (IMO)
I hope some of this helps
-phil

Unknown

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luvmum

PhillieG said:

Hi Dora
It's hard to say what your Mom can expect since we all react differently. When I was first dx almost 7 years ago (WOW, time flies even if you're NOT having fun all the time!) I started with FOLFOX and Avastin. Avastin was just approved for use so I only did 5 of the 6 months of chemo with it since it wasn't available the first month.

I did not have a too much trouble with side effects. There was the sensitivity to cold and some mouth sores at first. There is a thing called Magic Mouthwash that you need a prescription for that helped with the sores. I did not have them the entire time I was on that chemo. The oxyplatin did cause the sensitivity to cold and that stunk since I love ice cream. I just ate less of it and used a very small spoon. I have no experience with xeloda. I would HIGHLY recommend having a port installed for the chemo. Hands down it's the way to go (IMO)
I hope some of this helps
-phil

Hi Phil
Thank you so much for your encouragement! I really hope my mum could live for 7 years or longer too!

My mum is couching seriously lately and has bitter taste in her mouth. Her oncologist did prescribe some couch pills for her, but they don't seem to help much.
As for bitter taste in mouth, I wonder if you have had that experience before? Si there anything that would help?

Thanks a lot for your reply and best wishes to you!
Dora

luvmum

unknown said:

This comment has been removed by the Moderator

Hi kathy
Thank you so much for your sharing. Did you have experience of bitter taste in your mouth?

My mum couldn't eat anything because of this bitter taste in her mouth. Worse still, she couch seriously lately. I really don't know what to do. My heart is aching when I see her suffers.

All the best to you and wish you greatest health!
Dora

djm_2010

Hello Dora,
Im sad to
Hello Dora,
Im sad to hear that your mum had severe diarrhea with the xelox treatment. I'm on my 2nd round of xelox tomorrow and so far my diarrhea had been controlled by loperamide or anti diarrhea pills. I just take it once and but have constipation after that which I prefer than diarrhea. I think with 5fu you'll also have diarrhea because it's just the same with xeloda. I had a port inserted 4 days ago since I had severe pain in my right arm when oxiplatin was given. I was sedated when my port was inserted but was able to work in the afternoon. The pain was tolerable but you have to take care not to bump into anything. I was dx to have rectal cancer last aug 4 2010 and had my resection last nov 11 and have stage 2 rectal ca and luckily all my nodes are negative. Good luck to your mum!

djm_2010

Hello Dora,
Im sad to
Hello Dora,
Im sad to hear that your mum had severe diarrhea with the xelox treatment. I'm on my 2nd round of xelox tomorrow and so far my diarrhea had been controlled by loperamide or anti diarrhea pills. I just take it once and but have constipation after that which I prefer than diarrhea. I think with 5fu you'll also have diarrhea because it's just the same with xeloda. I had a port inserted 4 days ago since I had severe pain in my right arm when oxiplatin was given. I was sedated when my port was inserted but was able to work in the afternoon. The pain was tolerable but you have to take care not to bump into anything. I was dx to have rectal cancer last aug 4 2010 and had my resection last nov 11 and have stage 2 rectal ca and luckily all my nodes are negative. Good luck to your mum!

luvmum

djm_2010 said:

Hello Dora,
Im sad to
Hello Dora,
Im sad to hear that your mum had severe diarrhea with the xelox treatment. I'm on my 2nd round of xelox tomorrow and so far my diarrhea had been controlled by loperamide or anti diarrhea pills. I just take it once and but have constipation after that which I prefer than diarrhea. I think with 5fu you'll also have diarrhea because it's just the same with xeloda. I had a port inserted 4 days ago since I had severe pain in my right arm when oxiplatin was given. I was sedated when my port was inserted but was able to work in the afternoon. The pain was tolerable but you have to take care not to bump into anything. I was dx to have rectal cancer last aug 4 2010 and had my resection last nov 11 and have stage 2 rectal ca and luckily all my nodes are negative. Good luck to your mum!

Can she swim?
I'm just wondering if she can go to swim 2 weeks after she installs the port... it's really cold here and I want to take her to a sun and sea holiday in Feb (in between treatments). Do you think it's feasible?

Thanks a lot for your valuable information.
Dora

march07

luvmum said:

Can she swim?
I'm just wondering if she can go to swim 2 weeks after she installs the port... it's really cold here and I want to take her to a sun and sea holiday in Feb (in between treatments). Do you think it's feasible?

Thanks a lot for your valuable information.
Dora

get the port
Hi Dora,
Hope your mom is doing some better. I too have had all the meds you metioned in the past year - Avastin, Folfox and Xeloda. I'm a little younger, 43, and didn't have much in the way of side effects to the Avastin at all. Xeloda - nothing except my hands and feet always felt dry, tight and sometimes tingly. No diarrhea or constipation. However, my platelets dropped pretty low and the doc stopped the Xeloda after 2 rounds. The 5-FU in the bottle is a pain to hang on your body for 2 days, but I actually had minimal side effects from it. I never had mouth sores, but have heard that the Magic Mouthwash can help. Oxaliplatin was the worst one for me - the cold sensitivity was very noticeable - touching cold things, putting your hand in the fridge or freezer and drinking cold things is not very possible. I tried ice cream once and it felt like it burned my mouth. But you can work around that. Keep an eye on tingling in hands and feet. I've been off it for quite a while and have remaining symptoms. Just keep the MD informed of any of those symptoms. FATIGUE is the worst symptom for me. Just tired, sleepy, don't want to do much. Rest is so important!

As for the port - definitely get it. I had one placed initially and it didn't heal properly. So I had it removed and got a new one. I still don't know why it didn't heal right. I would think 2 weeks might be a little soon to swim. That site really needs to heal well, take my word for it, before submerging in water. The procedure was only about an hour. I was sore in the chest area of where it was placed for a few days, but that was it. It's so much easier for bloodwork and infusions to have the port. And the chemo can be pretty toxic to the veins in arms/hands. It's not really an issue with a port. I personally wouldn't do chemo without a port. Plus discuss your travel plans with the MD, as I'm sure you will. The MD will also offer suggestions about sun protection due to the chemo itself.

I hope that helps a little - hope you have a nice trip!

luvmum

march07 said:

get the port
Hi Dora,
Hope your mom is doing some better. I too have had all the meds you metioned in the past year - Avastin, Folfox and Xeloda. I'm a little younger, 43, and didn't have much in the way of side effects to the Avastin at all. Xeloda - nothing except my hands and feet always felt dry, tight and sometimes tingly. No diarrhea or constipation. However, my platelets dropped pretty low and the doc stopped the Xeloda after 2 rounds. The 5-FU in the bottle is a pain to hang on your body for 2 days, but I actually had minimal side effects from it. I never had mouth sores, but have heard that the Magic Mouthwash can help. Oxaliplatin was the worst one for me - the cold sensitivity was very noticeable - touching cold things, putting your hand in the fridge or freezer and drinking cold things is not very possible. I tried ice cream once and it felt like it burned my mouth. But you can work around that. Keep an eye on tingling in hands and feet. I've been off it for quite a while and have remaining symptoms. Just keep the MD informed of any of those symptoms. FATIGUE is the worst symptom for me. Just tired, sleepy, don't want to do much. Rest is so important!

As for the port - definitely get it. I had one placed initially and it didn't heal properly. So I had it removed and got a new one. I still don't know why it didn't heal right. I would think 2 weeks might be a little soon to swim. That site really needs to heal well, take my word for it, before submerging in water. The procedure was only about an hour. I was sore in the chest area of where it was placed for a few days, but that was it. It's so much easier for bloodwork and infusions to have the port. And the chemo can be pretty toxic to the veins in arms/hands. It's not really an issue with a port. I personally wouldn't do chemo without a port. Plus discuss your travel plans with the MD, as I'm sure you will. The MD will also offer suggestions about sun protection due to the chemo itself.

I hope that helps a little - hope you have a nice trip!

Thank you!
Hi March,

Thank you so much for your detail information and sharing.

I think I have to cancel the trip because my mum started serious diarrhea again two days ago and she has high fever at the moment. The medical team want to put her in hospital...

I really don't know why her stomach is so sensitive... xeloda - diarrhea, 5-fu - diarrhea... no matter what regimen she uses, she seems to suffer from diarrhea! She also complaints to have severe stomach cramp!

Thanks again and hope you are well all the time!
Dora

Unknown

luvmum said:

Thank you!
Hi March,

Thank you so much for your detail information and sharing.

I think I have to cancel the trip because my mum started serious diarrhea again two days ago and she has high fever at the moment. The medical team want to put her in hospital...

I really don't know why her stomach is so sensitive... xeloda - diarrhea, 5-fu - diarrhea... no matter what regimen she uses, she seems to suffer from diarrhea! She also complaints to have severe stomach cramp!

Thanks again and hope you are well all the time!
Dora

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