Lots of news...

allmost60
allmost60 Member Posts: 3,178
Hi...
Spent 2 hours at the clinic today. UGH! Soooo much information to sort through! First of all...the cancer hasn't gotten to the bone yet.BMB showed no sign of cancer. However...my doctor does not want to "watchfully wait" but instead start chemo on August 10th. She is worried about my loss of weight and the tumors in my neck and stomach. I'm having a hard time swallowing along with shoulder and back pain which leads her to believe that the tumors are growing in size. My tummy hurts after eating and I've lost 6 pounds in 3 weeks so she thinks the tumors are growing in there also. I meet with a surgeon on Thursday to schedule putting a port in. Wednesday I meet with a chemo nurse to learn all about the treatment my doctor has chosen. It's called Rituxin. I go in once every 3 weeks for a total of 8 weeks. I don't know all of the specifics yet about the treatment but I don't like hearing that prednisone is involved with the Rituxin.Me and prednisone do not go well together. I get very hyper on it and can't sleep and get very shaky...UGH!!! I'll know more about the EXACT cocktail on Wednesday and will let you know more then. She did say this is going to be a 2 year treatment program and the port will be in for that long. Does that sound common? Anyways...I guess I'll just take it one step at a time. Does the port hurt? Two years sounds like such a long time, but thats what the doctor said. I'm kind of going in circles in my mind with so much being said, but at least we are moving forward...right?
Love....Sue

Comments

  • vinny59
    vinny59 Member Posts: 1,032
    news
    Hey Sue, it is alot of information to take in, things get much more clearer once your treatment begins. The port getting put in is not that bad, as they put you to sleep for the procedure. Just keep an ice bag on it and take some ibeprofin for the discomfort. I hard a hard time sleeping at first because I tend to sleep on my side and stomach alot. Great news it's not in the bone! I heard that the port should stay in for two years in case of a relapse, my Dad had his in for three years. I think you are talking about the maintance Chemo to help keep you in remission. Waiting is the worse part, you are moving forward to get better!!!!! Praying for you!! Vinny
  • yesyes2
    yesyes2 Member Posts: 591
    Your on your way
    Well Sue it sounds like thngs went well today and you are on your way to starting treatment. It's great news that your bone marrow was clean. I'm a little confused and I'm sure you are too, but is your treatment just going to be Rituxan or are you going to be receiving chemo agents also? With Rituxan you really don't need a port, the drug is not harmful to your veins, and you can do it without steroids, and maintenance treatments usually last 2 years but like once every 3 months or so, lots of different maint schds. I actually just had a rituxan treatment last Monday and other than spending a day in out patient oncology I didn't miss a beat. I'm rituxan refractory but requested that I get it once ever 4 months or so. Well sounds like you'll learn more on Wednesday and I'm sure you'll let us know. August 14 was my first marriages wedding anniversary. Will be a god day to kick some cancer butt.
    Have a good night,
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    yesyes2 said:

    Your on your way
    Well Sue it sounds like thngs went well today and you are on your way to starting treatment. It's great news that your bone marrow was clean. I'm a little confused and I'm sure you are too, but is your treatment just going to be Rituxan or are you going to be receiving chemo agents also? With Rituxan you really don't need a port, the drug is not harmful to your veins, and you can do it without steroids, and maintenance treatments usually last 2 years but like once every 3 months or so, lots of different maint schds. I actually just had a rituxan treatment last Monday and other than spending a day in out patient oncology I didn't miss a beat. I'm rituxan refractory but requested that I get it once ever 4 months or so. Well sounds like you'll learn more on Wednesday and I'm sure you'll let us know. August 14 was my first marriages wedding anniversary. Will be a god day to kick some cancer butt.
    Have a good night,
    Leslie

    Ports
    Forgot about your question on the port. I made a really big deal out of it because I HATE SURGERY! I was also really scared. But in reallity it wasn't a big deal. I was sore for about one week and at times, 10 months later, it still feels odd. Never needed to take any pain meds, hardest part was not being able to shower for a week. Very cautious but very sexy doctor. Now I love my port and because my veins are bad I will keep the port. Right now I get it flushed every 4 weeks and other than looking pretty ugly, sticks out of my chest like an alien, I have no fat in that area, I'm very please. Be sure to ask for a power port, best way to go. Mine is smaller than a pediatric port and their great because they can be used for CT and MRI scans. Just not for PETs, bummer. Thanks for letting me rattle on..........Take care, Leslie
  • allmost60
    allmost60 Member Posts: 3,178
    yesyes2 said:

    Your on your way
    Well Sue it sounds like thngs went well today and you are on your way to starting treatment. It's great news that your bone marrow was clean. I'm a little confused and I'm sure you are too, but is your treatment just going to be Rituxan or are you going to be receiving chemo agents also? With Rituxan you really don't need a port, the drug is not harmful to your veins, and you can do it without steroids, and maintenance treatments usually last 2 years but like once every 3 months or so, lots of different maint schds. I actually just had a rituxan treatment last Monday and other than spending a day in out patient oncology I didn't miss a beat. I'm rituxan refractory but requested that I get it once ever 4 months or so. Well sounds like you'll learn more on Wednesday and I'm sure you'll let us know. August 14 was my first marriages wedding anniversary. Will be a god day to kick some cancer butt.
    Have a good night,
    Leslie

    Know more Wednesday
    Hi Leslie...
    I'm confused also, but Wednesday I go in at 10:00 to talk to the chemo nurse and she will explain exactly what my treatment consists of and the cocktail of chemo I'll be getting. My doctor rattled off soooo much information. First the BMB results...then my heart test results...then all of my blood work results...Geesh...by the time she started talking about my treatment plan and port and various side effects I will experience..I was like a deer in headlights...hubby too! Wednesday the chemo nurse will give me copies of everything my doctor talked to me about today. Then I'll be able to pass on the correct info to all of you. It was all very overwhelming to say the least.
    Love...Sue
  • yesyes2
    yesyes2 Member Posts: 591
    Dr. appointment
    Sue,
    Just wanted to say good luck and I'm thinking positive thoughts for you.
    Leslie