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  1. Thread: News of Jack

    by misskay
    Replies
    1,030
    Views
    70,686

    Haven't been on the forum in a while... life has...

    Haven't been on the forum in a while... life has been up/down, and busy. decided to pop in today only to read the sad news about Jack.

    Jack, you were a gentleman and a mentor. You will be missed...
  2. Thread: News of Jack

    by misskay
    Replies
    1,030
    Views
    70,686

    Haven't been on the forum in a while... life has...

    Haven't been on the forum in a while... life has been up/down, and busy. decided to pop in today only to read the sad news about Jack.

    Jack, you were a gentleman and a mentor. You will be missed...
  3. Replies
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    1,233

    Baz... I was too sick to work for the first year...

    Baz... I was too sick to work for the first year after diagnosis, and now that I'm healthier my doc approved me to go back to work but cautioned against going back to the job I left because of the 12...
  4. Thread: For the Ladies

    by misskay
    Replies
    39
    Views
    2,802

    I stopped having my cycle about 10 months ago due...

    I stopped having my cycle about 10 months ago due to Cytoxan. Stopped the Cytoxan in December and started Rtx in Feb due to the Cytoxan attacking my bladder. My cycle has not returned, and I was...
  5. Replies
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    5,696

    Had my 2nd rtx infusion today. The last one wiped...

    Had my 2nd rtx infusion today. The last one wiped me out for about 10 days. Really tired, really aching, headache. Hoping this one won't be so bad or last so long. Doc said the fact that I actually...
  6. Replies
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    5,696

    These are full-time infusion nurses. It's all the...

    These are full-time infusion nurses. It's all the do. Everyone else who was in and out of there all day got their IV on the first try. They finally managed to get my line started in a deep bicep...
  7. Replies
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    5,696

    wow sangye... sounds awful. These gals kept...

    wow sangye... sounds awful. These gals kept apologizing... and at one point one of them was practically lying on the floor trying to start it, with a tourniquit, dangling arm and heating pad... all...
  8. Replies
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    5,696

    Had my first rtx infusion yesterday. Took 6 tries...

    Had my first rtx infusion yesterday. Took 6 tries to get a good vein... I am covered in bruises. They got in the veins just fine, got good blood return, then the vein would blow. I think it upset the...
  9. Thread: Brian

    by misskay
    Replies
    10
    Views
    1,138

    ask away Brian... glad to have you with us. What...

    ask away Brian... glad to have you with us. What tests has your doc run so far?
  10. Replies
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    What dose of Pred are you on? I had the same...

    What dose of Pred are you on? I had the same problem for a long time... tiny, hard little bumps. As we tapered my Pred dose it went away. So, just be patient. I know that'[s probably not what you...
  11. Replies
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    5,696

    ok... the other new med is Diflucan. Same stuff...

    ok... the other new med is Diflucan. Same stuff they gave me when I had the fungal skin infection but at a MUCH higher dose. With the skin I think it was 100mg once a week. This is 100mg twice a day.
  12. Replies
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    5,696

    palmyra, the thrush has been on on-going problem....

    palmyra, the thrush has been on on-going problem. At first I figured it was the inhalers as these are the usual culprits for me... so stopped using all of them. Still keep the thrush. Have been using...
  13. Thread: Sad!!

    by misskay
    Replies
    42
    Views
    3,879

    I DO think of it as a battle... not a war, but a...

    I DO think of it as a battle... not a war, but a battle. I'm one of those people that has to get mad at something to really fight it I guess. May not work for some, some may not agree... but it's...
  14. Replies
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    5,696

    He wanted to up it to 40mg. Then we'd have to...

    He wanted to up it to 40mg. Then we'd have to gradually taper again. I promised to up it by 5mg at a time if things got worse. I HATE HATE HATE Pred and I won't up it if I can avoid it. Maybe I won't...
  15. Replies
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    5,696

    Saw the Pulmy today, and it's def Wegs flaring....

    Saw the Pulmy today, and it's def Wegs flaring. He upped the Bactrim to every day again, and wanted to up the Pred too, but I'm at 15mg now and don't want to go any higher if I can help it. I...
  16. Thread: Sad!!

    by misskay
    Replies
    42
    Views
    3,879

    I hate to hear that he lost the battle, but I'm...

    I hate to hear that he lost the battle, but I'm sort of glad to see that they named Wegener's, I mean if someone dies of cancer they don't hesitate to say so. Maybe it will help raise awareness of...
  17. Replies
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    5,696

    Sangye, the cavity pnuemonia was what first had...

    Sangye, the cavity pnuemonia was what first had me hospitalized (major lung involvement)... the holes are still in the lungs but had been shrinking with the Pred and Cytoxan. I'll see what the Pulmy...
  18. Replies
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    5,696

    Docs office just called... first infusion of...

    Docs office just called... first infusion of Rituxan is Feb 3rd. For anyone who's had it, what should I expect? Nausea? Continued hair loss? Any info would be great...
    Seeing the Pulmy tomorrow......
  19. Replies
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    He looks amazing.... thanks for updating us on...

    He looks amazing.... thanks for updating us on the good news :)
  20. Replies
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    Just wanted to update, and share the good news....

    Just wanted to update, and share the good news. Genentech just called me, and they have approved me to recieve the Rituxan for 1 year at no cost! Take THAT insurance company LOL
  21. Replies
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    3,007

    I just heard from Genentech (the maker of...

    I just heard from Genentech (the maker of Rituxan), and since my insurance company won't pay for it they have approved me to get the drug for 1 year at no cost. They will ship the first dose to the...
  22. Replies
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    3,795

    omg... please, please, please let me know what...

    omg... please, please, please let me know what you think of him!
    On another note, saw the Urologist today as planned. The urine is better, only a trace of blood, and no proteins this time. Said the...
  23. Replies
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    3,795

    no... haven't been on ctx since Dec 14th......

    no... haven't been on ctx since Dec 14th... that's why when things finally straightened out between Christmas and New Years I thought the problem was resolved and I wouldn't have to worry about it...
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    I considered Dr Allen, but she's about 375 miles...

    I considered Dr Allen, but she's about 375 miles from me... if I can't get in to see Dr Capizzi in Nashville, Dr Allen is next on my list :)

    Hopefully some time next week I'll hear from my...
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    Thanks everyone... and I HAVE gotten better about...

    Thanks everyone... and I HAVE gotten better about asking for help, at least from Hubby.
    Just got some news. The drug company that makes Rituxan (Genentech) just called. I have been tentatively,...
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