Progression

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  • janie1
    janie1 Member Posts: 753 Member
    #22
    herdizziness said:

    EAT EAT EAT
    You really need the food with the Xeloda, please ignore any fasting ideas when on Xeloda, or you will be feeling the tummy hurts like h@ll affect!!!
    Winter Marie

    hey smokey!
    I didnt forget about you. Had rfa yesterday and chemo today.
    Sorry if there is some progression, was it the lymph node too....or the spots on abdomen doctor is wondering about. When was your last cea?
    Hang in there. I havent been on xedoda, so no experience there. If i could do folfiri as is for the next 30 years.....that would be fine with me.
    Hugs to you!.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #23
    herdizziness said:

    Blood thinner
    The reason I am off of Avastin is due to the blood thinners I am on after getting a stent put in. So I would not be surprised if you don't get the Avastin, but as you said, it doesn't hurt to ask, it was a great combination the Xeloda and Avastin for me.
    The pill sorter is actually great for someone like me without a great memory. I put it on the dresser and at a glance could remember that I'm supposed to take my pills that day, as I had issues with forgetting, before I had the pill sorter, I would have to take out the pills and count them to see if I had remembered to take them or not, my memory didn't last until the evening. LOL.
    Winter Marie

    cim
    I suggest cimetidine as a consideration for partial replacement for VEGF inhibition, off label. In fact cimetidine was much more effective for Stage II and III CRC patients than (gasp) Avastin, since survival actually decreased for stage III patients on Avastin. Especially more favorable for CA19-9 (70-77% of mCRC patients) biomarked patients.

    What little data there is on stage IV CRC for cimetidine is actually very favorable but a very small test. Cimetidine has an advantage of being more accessible for long term maintenance treatment, too.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #24
    janie1 said:

    hey smokey!
    I didnt forget about you. Had rfa yesterday and chemo today.
    Sorry if there is some progression, was it the lymph node too....or the spots on abdomen doctor is wondering about. When was your last cea?
    Hang in there. I havent been on xedoda, so no experience there. If i could do folfiri as is for the next 30 years.....that would be fine with me.
    Hugs to you!.

    Thanks Tans, I have
    Thanks Tans, I have cimitidine prescribed by onc., we didn't discuss it this appt. Janie my last cea was two weeks ago it was at 3.5, up for me, typically sits at 1 and under usually .5, so I was visibly shaken with that but GP said it's in the normal range.....yeah, not for me I instantly felt this was trouble!! Weird thing with the lymph node, no mention of that one beside the spleen, but he did show me the other one that's in a bad place between my vena cava and anothe major artery. There is all this new junk showing up in space he described as fatty tissue. I actually showed him a spot I can feel where my hernia is, just this hard little lump sitting under my skin by my bellybutton...just kinda floating there doesn't seem attached to anything. Janie where did you have the RFA done?? Lungs Liver?? Sorry I'm in a fog. How did that go??
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #25
    smokeyjoe said:

    Julie thanks a lot....the
    Julie thanks a lot....the hospital onc. pharmacist called me just a little while ago. I asked her about the B6, she was curious where I heard it from....asked me if nurse recommended it ...I said no....she asked if someone on it recommended it....Yes. She looked it up....said they're doing clinical trials in the U.S. said it can't hurt may help. So, she said 100 mg. per day. If I wanted to take it in a multi vitamin with B6. Again, thank you :) She carried on about skin on feet...I'm standing in water shoes getting ready to go on the jet ski...my feet will get wet as I'm the spotter boat for something.....probably this isn't the best for my feet, I didn't mention what I was about to embark on...she was already long winded enough about the creams and not rubbing my feet when I sleep!!! I guessing throtteling hanging on to the handlebars aren't gonna be too good either, threre is a good chop out there. Time will tell.

    not folic
    I would suggest a multivitamin with L-5MTHF instead of folic acid, which disproportionately increases the toxicity more than the tumor kill. Less synthetic folic acid in "enriched foods" like bread is considered to be why Europeans are able to better tolerate Xeloda than North Americans.

    We actually formulate my wife's multivitamin mix at home because we use so much, formulated without the folic acid, and use high content L-5 MTHF food.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #26
    smokeyjoe said:

    Julie thanks a lot....the
    Julie thanks a lot....the hospital onc. pharmacist called me just a little while ago. I asked her about the B6, she was curious where I heard it from....asked me if nurse recommended it ...I said no....she asked if someone on it recommended it....Yes. She looked it up....said they're doing clinical trials in the U.S. said it can't hurt may help. So, she said 100 mg. per day. If I wanted to take it in a multi vitamin with B6. Again, thank you :) She carried on about skin on feet...I'm standing in water shoes getting ready to go on the jet ski...my feet will get wet as I'm the spotter boat for something.....probably this isn't the best for my feet, I didn't mention what I was about to embark on...she was already long winded enough about the creams and not rubbing my feet when I sleep!!! I guessing throtteling hanging on to the handlebars aren't gonna be too good either, threre is a good chop out there. Time will tell.

    Just remember one thing
    I didn't have any problem with my feet or hands doing any peeling or hurting, you may be the same, one never knows until it does or doesn't happen to them. So its okay to be prepared, but hopefully not expectant of a side affect. I also have a dark tan (I know, now I worry about skin cancer)and was out all the time while on Xeloda too, I actually used to burn, (light skinned and blonde with red natural tints) before chemo, but since chemo I just tan nicely, beats the burning any day. Understand I'm not recommending the sun that I get, just you may find that doing something you're not used to doing (covering all parts of your body up)may not be necessary. Take everything in a little at a time, this way you don't stress, and you find out what you tolerate. I think there are a few of us that didn't have affects from the Xeloda, so please remember every horror story may not be yours.
    So, here's hoping that you suffer few if any side affects from the Xeloda, that your tumors shrink and calcify and that you feel terrific!!!
    Thinking of you,
    Winter Marie
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #27
    smokeyjoe said:

    Thanks Tans, I have
    Thanks Tans, I have cimitidine prescribed by onc., we didn't discuss it this appt. Janie my last cea was two weeks ago it was at 3.5, up for me, typically sits at 1 and under usually .5, so I was visibly shaken with that but GP said it's in the normal range.....yeah, not for me I instantly felt this was trouble!! Weird thing with the lymph node, no mention of that one beside the spleen, but he did show me the other one that's in a bad place between my vena cava and anothe major artery. There is all this new junk showing up in space he described as fatty tissue. I actually showed him a spot I can feel where my hernia is, just this hard little lump sitting under my skin by my bellybutton...just kinda floating there doesn't seem attached to anything. Janie where did you have the RFA done?? Lungs Liver?? Sorry I'm in a fog. How did that go??

    Winter Marie....weird...I
    Winter Marie....weird...I have people commenting on how even a tan I have, that it looks like a spray on...I am very blond and typically burn very easily...this summer with this weather I have been going for a swim in the a.m. before I head into work....so I've gotten this slow tan without burning at all being in the sun at 9:00 in the morning. I actually took morning off and went for a ride with my son this morning in his boat....spur of the moment "mom you wanna come" and I didn't cover up or put sun screen on..was out there till 12:30....and I was all good so far. My lips are blistered from being at a ball tournament all weekend, darn Freezies, does it to me all the time....I know oncologists nurse is gonna give me a lecture....I got one last summer, she's worried about the blisters being a source of infection that could be severe.

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