Met with transplant doc/clinic today

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dixiegirl
dixiegirl Member Posts: 1,043 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Well, I liked the doctor and the nurse coordinator. I have never been so overwhelmed in my life. Transplant is an outpatient procedure. I will not be able to work for 3 months.
I'll be doing Treanda & Rituxan first to get back to remission.

They will do a scan and bone marrow biopsy to make sure I am in remission before they do the transplant. They don't sedate for the bmb, but have assured me they do 5 or 6 a week and are very good at it and will give me stuff to calm me down, yeah right.

It will take 1-3 days to collect the cells, 5 hours a day. The chemo they are going to give me is 20 times harder than cvpr. I will need constant 24/7 caregiver with me at all times for 30 days. I will need to stay at hope house, because I just don't think I can expect Jim's Aunt and Uncle to be able to do it without wearing them down which I really do not want to do, they are both over 80.

I can go outside IF no one is mowing, digging around in the dirt, or if it's very windy...I live in KANSAS, when the hell ISN'T it windy? I'll be able to go home after 30 days. I can't dust, vacuum, clean with any chemical or wipes. Can't even be in the room during those things.

My head is spinning.
Take care, everyone

Beth

Comments

  • KC13167
    KC13167 Member Posts: 215
    #2
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    Transplant
    Beth,

    Wow! My head is spinning just listening to all they told you. I imagine that you will come up with a large list of new questions as you process today's visit. Will you be meeting with these folks again in the near future?

    Are they able to hook you up with some people that have had this procedure?

    I guess the part that I'm most confused/concerned about is that it's an out patient procedure. The University Hospital that I have been hospitalized at, for cancer related issues, has a large "Transplant Unit" for hematology/oncology. I thought that you had to be very secluded, kinda like the boy in the bubble secluded.

    Good thoughts! I look forward to your posts. Will be praying for you. Kellie
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #3
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    KC13167 said:

    Transplant
    Beth,

    Wow! My head is spinning just listening to all they told you. I imagine that you will come up with a large list of new questions as you process today's visit. Will you be meeting with these folks again in the near future?

    Are they able to hook you up with some people that have had this procedure?

    I guess the part that I'm most confused/concerned about is that it's an out patient procedure. The University Hospital that I have been hospitalized at, for cancer related issues, has a large "Transplant Unit" for hematology/oncology. I thought that you had to be very secluded, kinda like the boy in the bubble secluded.

    Good thoughts! I look forward to your posts. Will be praying for you. Kellie

    It is..
    Just the center where I went today, you have to wash your hands before you can even go in. It's very germ free. The nurses wipe the waiting room chairs with disinfectant wipes after you get up to go back for treatments.

    The "boy in the bubble" is true....very true. I will be whisked from the car direct to the clinic and back to house, NOWHERE else, with masks. The clinic is open 24/7 and any fever etc we go back there NOT the hospital. As my onc says hospitals are full of germs and they try to keep you out of there as much as possible.

    Chemo for the sct is 5 days. All day monday, twice a day tues, wed, thurs, & fri. They will send me home with a pump with Ativan and some other nausea med. I was stunned.

    Like I said it's totally insane.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
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    dixiegirl said:

    It is..
    Just the center where I went today, you have to wash your hands before you can even go in. It's very germ free. The nurses wipe the waiting room chairs with disinfectant wipes after you get up to go back for treatments.

    The "boy in the bubble" is true....very true. I will be whisked from the car direct to the clinic and back to house, NOWHERE else, with masks. The clinic is open 24/7 and any fever etc we go back there NOT the hospital. As my onc says hospitals are full of germs and they try to keep you out of there as much as possible.

    Chemo for the sct is 5 days. All day monday, twice a day tues, wed, thurs, & fri. They will send me home with a pump with Ativan and some other nausea med. I was stunned.

    Like I said it's totally insane.

    Wow!
    Hi Beth,
    All I can say is wow! Thats alot to wrap your head around girlfriend! When do you start the process? Hope you can take a break this weekend to absorb all of this.
    Love ya...Sue (FNHL-2-3A-6/10)
  • forme
    forme Member Posts: 1,161 Member
    #5
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    Stay strong
    Hi Beth,
    Wow, that is a lot of news to take in. When are you planning to start chemo. Hopefully this weekend you will be able to relax a little. Sending you lots of (((hugs)))
    Lisha
  • JoanieP
    JoanieP Member Posts: 573
    #6
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    dixiegirl said:

    It is..
    Just the center where I went today, you have to wash your hands before you can even go in. It's very germ free. The nurses wipe the waiting room chairs with disinfectant wipes after you get up to go back for treatments.

    The "boy in the bubble" is true....very true. I will be whisked from the car direct to the clinic and back to house, NOWHERE else, with masks. The clinic is open 24/7 and any fever etc we go back there NOT the hospital. As my onc says hospitals are full of germs and they try to keep you out of there as much as possible.

    Chemo for the sct is 5 days. All day monday, twice a day tues, wed, thurs, & fri. They will send me home with a pump with Ativan and some other nausea med. I was stunned.

    Like I said it's totally insane.

    Amazing.
    Beth, we are lucky to live in this world in 2011. From what I have heard and what you wrote they have made such headway with this procedure. Moffitt in Tampa Fl seemed to have the same procedure. I did not qualify as my tumors were small. They told me you have to stay at a special house right near the hospital unless you can get to the hospital in 10 minutes. Please keep us posted. I am sure it is mind boggeling Joanie
  • truckingalong
    truckingalong Member Posts: 445 Member
    #7
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    Praying for you
    Hi, Beth,

    That is a lot to take in. Well, the comfort is to sleep this whole thing off! Much luck to you. Will be thinking of you everyday.

    Hugs,
    Liz
  • tom29mi
    tom29mi Member Posts: 31 Member
    #8
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    i just had a transplant on
    i just had a transplant on feb 8 dixie....its not really as bad as it sounds....you get the cells back through iv and other than getting sick during it i had no problems at all.i got 7 iv bags of cells infused.only difference with mine is i had to stay in the hospital for 3 weeks and that was hard but i made it through.i havent had any problems since i got out of the hospital andso far so good.
  • miss maggie
    miss maggie Member Posts: 929
    #9
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    tom29mi said:

    i just had a transplant on
    i just had a transplant on feb 8 dixie....its not really as bad as it sounds....you get the cells back through iv and other than getting sick during it i had no problems at all.i got 7 iv bags of cells infused.only difference with mine is i had to stay in the hospital for 3 weeks and that was hard but i made it through.i havent had any problems since i got out of the hospital andso far so good.

    Wonderful news
    Dear Tom,

    Thank you for sharing your story. How wonderful everything went well. You will be an
    inspiration for those about to under go a transplant.

    Yes, being in the hospital for 3 weeks is miserable. I also was in the hospital for 3 weeks, looking out the window and wishing I was home. My NHL was discovered when my small bowel perforated. I had surgery to resect the bowel, then 3 weeks in hospital.

    Stay well and feeling good. Love Maggie

    DX Sept 2009, Extranodal marginal zone b cell NHL - remission Jan 2011 ??

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