Need to hear what you all think

Paula G.
Paula G. Member Posts: 596
edited March 2014 in Colorectal Cancer #1
Hi,
John had his 14th treatment of Folfox+ avastin without the Oxy. They printed out the report from his CT. Mets in his lungs liver and the spot on his right adrenal have all shrunk and are responing to theropy. She gave him the go ahead to take a short break from Chemo. She didn't think that it would hurt anything at this point.
When he starts back she wants to try him on Xeloda two weeks on and one week off plus Avastin every three weeks. She said that she thought that he would continue to have good results. She said that she felt that the response would be the same or better. She did mention the hand and foot burning.
My question is has anyone done the Xeloda and avastin and what are your feelings. Did you tolerate it pretty good? Did you feel better on the oral meds vs. the pump?
She will scan every two to three months. This sounded great to me because the last place he was at did the PET at the start of chemo and then wasn't going to do any scan until he had finished 12 treatments. She will be able to see any changes faster and change his treatment if he stops responding.
It is all so much to take in. Damn cancer. I feel good about the results so far. I was wanting more but then I guess that is what everyone wants...Right?

Comments

  • lesvanb
    lesvanb Member Posts: 905
    #2
    Hi Paula
    It's good to hear from you. That's great that the tumors are responding to treatment! How wonderful, and I totally get your statement about wanting more. I only took Xeloda neoadjuvant so don't have any long term experience with it other than to stay ahead of the mouth sores with a gargle of 1 tsp baking soda a 1/2 tsp salt in pint of water water every time John goes to the bathroom, and keep his feet and hands slathered with a moisturizer like Burt's Bees with beeswax or a Shea butter base. Sleeping with socks over the cream helps a lot, same with cotton gloves. I'm sure others wll be along with more info about Xeloda long term.

    all the best, Leslie
  • Paula G.
    Paula G. Member Posts: 596
    #3
    lesvanb said:

    Hi Paula
    It's good to hear from you. That's great that the tumors are responding to treatment! How wonderful, and I totally get your statement about wanting more. I only took Xeloda neoadjuvant so don't have any long term experience with it other than to stay ahead of the mouth sores with a gargle of 1 tsp baking soda a 1/2 tsp salt in pint of water water every time John goes to the bathroom, and keep his feet and hands slathered with a moisturizer like Burt's Bees with beeswax or a Shea butter base. Sleeping with socks over the cream helps a lot, same with cotton gloves. I'm sure others wll be along with more info about Xeloda long term.

    all the best, Leslie

    Thanks
    Thanks Leslie,
    I mentioned the mosturizer to him and he said " we'll see". It's a guy thing I think. the mouth wash is a great idea.
    I am wanting to hear more on the people that have used it long term.Did it upset your stomach?
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #4
    Paula G. said:

    Thanks
    Thanks Leslie,
    I mentioned the mosturizer to him and he said " we'll see". It's a guy thing I think. the mouth wash is a great idea.
    I am wanting to hear more on the people that have used it long term.Did it upset your stomach?

    I haven't taken Xeloda, but
    I haven't taken Xeloda, but have a friend with pancreatic cancer (for several years now - he has really beaten the odds). He has been on it over a year now. (I was surprised after my DX when he told me he was actually on a colon cancer drug, and told me to look into it for myself.)

    It shrunk all his liver mets down to nothing! The primary tumor on the pancreas did not shrink, but it hasn't grown either. He has been on all sorts of IV therapies - clinical trials at MD Anderson and many others. He hated them all - lots of side effects. He says he has had relatively no side effects from Xeloda. He loves it.

    Obviously everyone reacts differently, but his experience has been a positive one.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
    Kathryn_in_MN said:

    I haven't taken Xeloda, but
    I haven't taken Xeloda, but have a friend with pancreatic cancer (for several years now - he has really beaten the odds). He has been on it over a year now. (I was surprised after my DX when he told me he was actually on a colon cancer drug, and told me to look into it for myself.)

    It shrunk all his liver mets down to nothing! The primary tumor on the pancreas did not shrink, but it hasn't grown either. He has been on all sorts of IV therapies - clinical trials at MD Anderson and many others. He hated them all - lots of side effects. He says he has had relatively no side effects from Xeloda. He loves it.

    Obviously everyone reacts differently, but his experience has been a positive one.

    No Idea
    Sorry for not posting but I have no dealings with Xeloda so I didn't want to respond except to say we are here for you both.........{{{{{{hugs}}}}}}....Clift
  • robinvan
    robinvan Member Posts: 1,012
    #6
    Hi Paula and John
    I've had both at different times. 12 treatments with the pump (6 Folfox/6 Folfir) and 6 with Xeloda/Irinotecan/Avaxtin. The only problems I had with Xeloda were nausea and low WBC/Platlets. I did not have the hand/foot rash which I understand can be quite uncomfortable. I used a recommended B (B12?) vitamin to help prevent it. Others found a good cream (udder cream?) that gave relief and kept it managable. I bounced back quite quickly after Xeloda

    Sounds like you've got a good Doctor that you trust.

    Do enjoy the short break!

    Best to both of you... Rob; in Vancouver
  • crazylady
    crazylady Member Posts: 543 Member
    #7
    xeloda and avastin
    Hi Paula,

    I have been on xeloda and avastin, every other week since January. I have found the side effects to be much less than any other treatment I've been on and I have been on many over the last 5 1/2 years. It's much easier for me than the pump for 48 hours. I've had almost no nausea, some soreness and stiffness in my hands and some problem with ingrown toenails and of course the usual tiredness. I have mets in both lungs and they have been stable since January.
    I hope this helps.

    Jamie
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #8
    Hi Paula
    I have no experience with Xeloda but it sounds like you guys have a great team behind you.
    Continued good news.
    -phil
  • maglets
    maglets Member Posts: 2,576 Member
    #9
    PhillieG said:

    Hi Paula
    I have no experience with Xeloda but it sounds like you guys have a great team behind you.
    Continued good news.
    -phil

    xeloda
    Hi Paula: that's terrific that the tumours seems to be responding to treatment.

    I was on xeloda by itself for 6 months after liver re-section. I found it to be relatively tolerable....much easier than infusions that's for sure. I too used B6 to help the mouth and I had a special mouthwash but it really never got too bad. I had almost no hand and foot. I did get abdominal discomfort...downright pain at times.

    More recently I was on xeloda with oxy infusions after a second liver re-section.I started in January and finished at the end of june. The first few months were ok but it got harder...I really think that was the oxy kicking in and not the xeloda. Some people just cruise on their xeloda so let`s go with that!

    hoping for continuing success

    best wishes
    |mags|
  • Paula G.
    Paula G. Member Posts: 596
    #10
    maglets said:

    xeloda
    Hi Paula: that's terrific that the tumours seems to be responding to treatment.

    I was on xeloda by itself for 6 months after liver re-section. I found it to be relatively tolerable....much easier than infusions that's for sure. I too used B6 to help the mouth and I had a special mouthwash but it really never got too bad. I had almost no hand and foot. I did get abdominal discomfort...downright pain at times.

    More recently I was on xeloda with oxy infusions after a second liver re-section.I started in January and finished at the end of june. The first few months were ok but it got harder...I really think that was the oxy kicking in and not the xeloda. Some people just cruise on their xeloda so let`s go with that!

    hoping for continuing success

    best wishes
    |mags|

    Thanks
    Thanks everyone. Makes me feel a lot better. Best to all of you Paula
  • jillpls
    jillpls Member Posts: 238
    #11
    I'm on same treatment plan
    Hi
    I've been taking Xeloda and Avastin since January and doing fine. I couldn't tolerate the xeloda every other week so I'm on it every three weeks with the Avastin. I will have a CT in October but with Gods blessing I will still be NED>

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