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Transplant update..sory haven't been commenting too much lately

I feel so bad that I really haven't updated much with what's going on with me, so I will back up and try to start from the beginning.

Had my trifusion port surgery on Friday the 20th which went really well and doesn't bother me all that much anymore.

Did my stem cell harvest on Monday the 23rd and got them all in one day YIPEE!!

They originally had me scheduled to start the high dose chemo on 5/31 but ran into the BCNU shortage issue, so I'd been on hold. My coordinator told me they had me bumped out to start on 6/6, but they did get my dose and called Wednesday morning and had me scheduled to start the chemo yesterday 6/2. So we are back at Hope Lodge, did the first chemo BCNU yesterday, and this morning starting the beginning of the twice a day ara-c, etoposide, and cyclophosphamide (cytoxan). Today my appointments are at 7:30-1:30 or so and then this afternoon from 4:00-5:30.

Didn't have too bad of night although had some issues trying to sleep. I am attached to a backpack and trying to keep track of the cords and bags while sleeping isn't easy. I think they are writing me a script for something to help me sleep when needed.

I have to keep track of all my input and output and trying to remember to do this is not easy either. I am not looking forward to accounting for the diahrea when and if it happens, hoping for not happening...but not going to hold my breath either.

Enough of me,
How is everyone else doing these days?

Take Care,
Beth

Comments

  • miss maggie
    miss maggie Member Posts: 929
    You sound good
    Dearest Beth,

    Considering everything you've been thru, you sound some what not too bad. You really
    have a good head on your shoulders. All your text info is so complete, and informative.
    I certainly hope when you have time, you post all of your experiences on your
    personal site (expressions) on CSN.

    I have to admit, I do not understand your abbreviations, but that's OK.

    I am doing fine so far. Praying for you with the angels up above, you continue
    not having so many side effects. I am sending you positive energy for a
    complete remission.

    God Bless You. Hugs and love to you. Maggie
  • KC13167
    KC13167 Member Posts: 215
    You sound well. It was nice
    You sound well. It was nice to hear from you.

    How long until you go home?

    I've heard that there are over 200 different medications that are either in very low supply or are unavailable in the US at this time. I'm so grateful that they found your drug so quickly. It's upsetting that medications that are needed in a time sensitive manner may be unavailable to those when they need it, to keep them alive.

    I continue to pray for you. Tell them to hurry up so that you can get home!

    Big hugs to you,
    Kellie
  • allmost60
    allmost60 Member Posts: 3,178
    KC13167 said:

    You sound well. It was nice
    You sound well. It was nice to hear from you.

    How long until you go home?

    I've heard that there are over 200 different medications that are either in very low supply or are unavailable in the US at this time. I'm so grateful that they found your drug so quickly. It's upsetting that medications that are needed in a time sensitive manner may be unavailable to those when they need it, to keep them alive.

    I continue to pray for you. Tell them to hurry up so that you can get home!

    Big hugs to you,
    Kellie

    Hard to understand...
    Hi Beth,
    It's so hard for me to understand how certain life saving drugs can be in short supply. It baffles my mind! Thanks so much for sharing your information as i know you have so much to deal with. I am doing fine, just waiting for warm weather to arrive. I keep you in my prayers everyday dear and always think good thoughts for us all. Take care...Love ya...Sue
  • JoanieP
    JoanieP Member Posts: 573
    good
    Hi Beth
    It is good to hear from you. I 'm glad things are moving along. I think of you often and pray for that 60% to be 100% for you. Take care Joanie
  • tom29mi
    tom29mi Member Posts: 31
    JoanieP said:

    good
    Hi Beth
    It is good to hear from you. I 'm glad things are moving along. I think of you often and pray for that 60% to be 100% for you. Take care Joanie

    good
    glad to hear youre started with the chemo i was weak during the week of chemo and got sick during the transplant but the rest of the time wasnt bad.remember youre lucky to do outpatient and not have to spend 3 weeks in the hospital like i did