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edited March 2014 in Colorectal Cancer #1
Well, after a lousy Christmas, because Bert was soooooo sick with his diarrhea, I just wanted to share that I sure had a great New Year week and weekend after. He is feeling so much better and we spent his 52nd birthday, celebrating in Las Vegas. His birthday was actually on Monday, January 5, but for the past few years we've pretty much always gone to Las Vegas on the weekend after New Years, and with him feeling so well and his spirits so high, we made no exception to the rule this year either.

As usual, he was lucky....but not quite as lucky as on many occassions before. He did win $2,000, but blew it all. Hey, it was casino money and that's what made it fun. I only hope and pray that he is as lucky in his continued fight against cc. Hopefully God will smile on us ALL in 2004 and bring about a cure or at least darn good and close to one.

Mom came with and she is doing very well. Had a very, very good time. It did my soul a lot of good to see both of them so happy and well.

It never ceases to amaze me how fast Bert bounces back, but I suppose that's a good sign. I honestly don't know whether the shots that I ended up having to give him three times a day did the trick with his diarrhea or whether it was the last dose of chemo being so low. He was still having diarrhea through the end of December, but not as severe and then things started really going uphill from there. This coming Thursday will be Bert's third week of chemo.

And as far as my mom goes, her oncologist's latest remark to her when he saw her about two weeks ago was that he feels she is doing remarkably well. She had the tests done December 29 (pet infusion) and there were no messages on her phone to call the doctor's office when we got back and mom using her never ending optimism believes that that is a very good sign as had there been anything wrong, surely there would have been a message waiting for her to contact the doctor when she returned. She will call the doctor today as he usually has results within a few days. I'm a little "up tight" and just wish that a little more of her optimism would rub off on me. Oh well, we are who we are and I do try.

Thursday we go to see Dr. Lenz at USC/Norris Cancer Center. That's the new onc for Bert. I believe I mentioned before that Dr. Lenz strongly feels to give Bert the best shot at cure, he should have some more chemo....and not just the 5FU/Leucavorin, but adding the Oxaliplatin as well. While Bert and I both look at it with mixed emotions, and dread the possible relapse of such severe diarrhea, we will proceed and trust in Dr. Lenz's judgement. At some point, I suppose I have to trust someone and since this onc came so highly recommended, I may as well start here and now as the last 5 months under Bert's current insurance and its limitations have driven me crazy. I will write more about our visit and what will happen now, etc. as it develops.

Once again, here's wishing everyone a most healthy 2004 and all the best wishes in the world.

Monika

Comments

  • pattieb
    pattieb Member Posts: 168
    #2
    Good luck Monika and Bert, I just started that same treatment yesterday and so far no diarrhea but then I usually don't get it I go the other way which sometimes can be as bad. One thing I found out is I can't have anything cold has to be room temperture which is alitlle hard as all the room temp. stuff doesn't help my dryness or thirst. Keep us informed about how he is doing.
    Pattie
  • Unknown
    Unknown
    #3
    pattieb said:

    Good luck Monika and Bert, I just started that same treatment yesterday and so far no diarrhea but then I usually don't get it I go the other way which sometimes can be as bad. One thing I found out is I can't have anything cold has to be room temperture which is alitlle hard as all the room temp. stuff doesn't help my dryness or thirst. Keep us informed about how he is doing.
    Pattie

    I will Pattie, keep you posted. I don't know when Dr. Lenz will start Bert on the treatment and I know it won't be for long...just giving him what he feels the HMO (that insurance issue again) should have given him and didn't. Bert already drinks things at room temperature. It agrees much better with his digestive tract. Actually, I keep it in the garage so it's a little cooler than room temperature. Good luck to you too and I'll be sending positive vibes your way. Take care.

    Monika
  • pattieb
    pattieb Member Posts: 168
    #4
    unknown said:

    I will Pattie, keep you posted. I don't know when Dr. Lenz will start Bert on the treatment and I know it won't be for long...just giving him what he feels the HMO (that insurance issue again) should have given him and didn't. Bert already drinks things at room temperature. It agrees much better with his digestive tract. Actually, I keep it in the garage so it's a little cooler than room temperature. Good luck to you too and I'll be sending positive vibes your way. Take care.

    Monika

    Monika, The reason they said room temp only as it can close up your throat, which I did experience when my juice was still to cold I didn't drink alot just a slip and I could feel it starting to close, so please be careful Bert doesn't need anymore problems.
  • aleftina
    aleftina Member Posts: 102
    #5
    pattieb said:

    Monika, The reason they said room temp only as it can close up your throat, which I did experience when my juice was still to cold I didn't drink alot just a slip and I could feel it starting to close, so please be careful Bert doesn't need anymore problems.

    I also had a problem in my throat with drinks cooler than a room temperature, I bought a drink at the movie theater and said "no ice" not realizing it would still be cold, I only took one sip through the straw and I felt my throat becoming scratchy like. I am going for chemo tomorrow and it is so cold here in NYC, I am worried about breathing the cold air even if I cover my mouth. After I get home, I am not leaving the house, buying enough groceries for a week so I don't have to go anywhere. Having Oxaliplatin in a cold of witner is no fun.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    aleftina said:

    I also had a problem in my throat with drinks cooler than a room temperature, I bought a drink at the movie theater and said "no ice" not realizing it would still be cold, I only took one sip through the straw and I felt my throat becoming scratchy like. I am going for chemo tomorrow and it is so cold here in NYC, I am worried about breathing the cold air even if I cover my mouth. After I get home, I am not leaving the house, buying enough groceries for a week so I don't have to go anywhere. Having Oxaliplatin in a cold of witner is no fun.

    Runners and cyclists will tell you to breathe in through your nose especially in the winter as that will warm the air was it passes through your sinuses. Hard to believe it was 72 in DC on Monday (the wind chill had us around 0 this morning). UGH - MISSISSIPPI, here I come!
  • aleftina
    aleftina Member Posts: 102
    #7
    spongebob said:

    Runners and cyclists will tell you to breathe in through your nose especially in the winter as that will warm the air was it passes through your sinuses. Hard to believe it was 72 in DC on Monday (the wind chill had us around 0 this morning). UGH - MISSISSIPPI, here I come!

    I wouldn't dare breath through my mounth! I was worried that the air would not be warm enough even if I breath though my nose so I was convering it with my scarf. The nurse at the hospital scared me to death, she said: don't breath the cold air, your throat will go into spasms and close up. So when I left the hospital I was so paranoid, I had my mouth and nose covered up and could hardly breath.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #8
    aleftina said:

    I wouldn't dare breath through my mounth! I was worried that the air would not be warm enough even if I breath though my nose so I was convering it with my scarf. The nurse at the hospital scared me to death, she said: don't breath the cold air, your throat will go into spasms and close up. So when I left the hospital I was so paranoid, I had my mouth and nose covered up and could hardly breath.

    Do you think that's why Michael Jackson always has a mask on his face??? Maybe he has the SAME NURSE! Amaaaazing revelations here at the CSN... Gotta go call the National Enquirer!
  • aleftina
    aleftina Member Posts: 102
    #9
    spongebob said:

    Do you think that's why Michael Jackson always has a mask on his face??? Maybe he has the SAME NURSE! Amaaaazing revelations here at the CSN... Gotta go call the National Enquirer!

    I don't think so, Bob, Michael wears his even in the summer. I don't think Patty the nurse would advise him to do it in the heat of summer! :D

    Here are my latest news: I had my first bolus administration of 200 mg of Oxaliplatine today, and I started Xeloda too already. I am feeling a little noxious, and a little drug (I had marinol), and now on campazene and attivan. Hopefully it will do it, I need to keep the food down and take the Xeloda. My doctor gave me a prescription against nausea that was $400 but my insurance said they didn't cover it, so campazene and attivan will have to do it for me. Someone mentioned day 3 and 4 were the worst, was it because of nausea or tiredness? I am a little anxious, I got all the groceries I need for a week (hopefully), got a lot of juices and mineral water I go crazy for after chemo, and I have a friend who would be able to come on Sunday and bring me more groceries if I need. She is taking care of her elderly mom on Saturdays, and her sister does it on Sunday. I am so lucky to have her for a friend, she is truly an angel.

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