All About Rituximab

[Jack]

I also don't understand why they thought they needed rtx (a big gun) but are now settling for Cellcept (a small gun).

I thought that was odd too.

[elephant]

It takes a month or two for cellcept to kick in.

[Nancy]

I am so sorry to hear about all of your issues Lisa Marie... I read back a number of days to see how issues have been developing... I hope that you will be better and out of the hospital by Monday. ICU and bronchs are just not the way that life should occur... Are they checking with Abdou about all the medications and care the office is providing? Also - I saw where you saw the general MD at the office - I hear that is not the best from some of the staff... Probable poor use of time... I lost a lot of weight when I was initially Dx about 25 lbs in 30 days - and darned if I did not notice... I am fairly close - if you need something - let me know... another Wegs face can be medicine - good or bad - we have to see...
The issues with the job and money.. I understand that... but you can't make any money dead... The short-term disability will cover you for - what, about 6 months...enough time to clear up this health issue... The cytoxan is not too bad... I took some of the infusions - did not like - they made me nauseated all month... after 2 times I stopped and went back to oral... I know about higher potentials for health issues - but there are basic issues to follow - like drink like your middle name is "Moby" or "Flipper" and the effectiveness is the same and a bit more with the oral... I am available if I can help at all. Sorry to have missed all the chances to provide support.... Nancy

[elephant]

How are you doing Nancy?

[LisaMarie]

still in ICU on bipap waiting on results on tpn and lipids as well anti everything they did stop the vancomycin bit replaced with something else holding my own able to sit in a chair for about 15min and cleaned myself up but got aweful wore out ughh

[Nancy]

Hi elephant -
How are things with you? I just have not been checking in as frequently as apparently I should!
Overall doing pretty well... I feel bad that I am doing so well and Lisa Marie is not... The RTX worked well for me... I am still getting fatigued at times - but feel that I have achieved about 80% of what I had before I took the systemic tumble last October.... No other issues with side effects, etc.... Having this for 15 yrs and having it all change in such a short time has been a learning experience in tolerance... I finally got my hat handed to me from my body - just when I was pretty dead set that I controlled the function and moods... I have a bit of a viral "cold" from one of my patients... too small rooms and poor air exchanges... oh well, this too shall pass!
Sangye - you are much too tolerant - I would have taken one look at that chick and reminded her where she worked and with what level of immune suppressed people that she was serving.... then ended with " where is your mask or is there someone else who will draw my blood? If not - I will not have it done today and explain to my doctor why I could not have it done....you!"
Good wishes to all - anything that I can do for you Lisa Marie - let me know... I am in KC usually Monday/Tuesdays for my clinics and would be available after 5 pm...
Nancy

[Sangye]

Nancy, I'm so glad to hear how well you're doing! I hope you get back the remaining 20% very soon.

I normally would have raised a stink with the phlebotomist, but she's the only one there and I'm not going back to JHU for another week. We needed some of the test results that day. I hope Dr Seo handled it. The woman is very difficult and really should not be working there at all. I can usually get the grumpiest people to warm up after awhile, but not her. Two years and she's still nasty.

[LisaMarie]

I am so sorry to hear about all of your issues Lisa Marie... I read back a number of days to see how issues have been developing... I hope that you will be better and out of the hospital by Monday. ICU and bronchs are just not the way that life should occur... Are they checking with Abdou about all the medications and care the office is providing? Also - I saw where you saw the general MD at the office - I hear that is not the best from some of the staff... Probable poor use of time... I lost a lot of weight when I was initially Dx about 25 lbs in 30 days - and darned if I did not notice... I am fairly close - if you need something - let me know... another Wegs face can be medicine - good or bad - we have to see...
The issues with the job and money.. I understand that... but you can't make any money dead... The short-term disability will cover you for - what, about 6 months...enough time to clear up this health issue... The cytoxan is not too bad... I took some of the infusions - did not like - they made me nauseated all month... after 2 times I stopped and went back to oral... I know about higher potentials for health issues - but there are basic issues to follow - like drink like your middle name is "Moby" or "Flipper" and the effectiveness is the same and a bit more with the oral... I am available if I can help at all. Sorry to have missed all the chances to provide support.... Nancy

i know what u r saying...my body handed by but to me for not listening...i saw the urgent care doc and the WG specialst.:..she is an er doc very through and got the specialist right away....once i get
out of icu i may know more

[elephant]

LIsamarie glad you are being taken care of, hopefully you will recover soon.
Nancy that is so wonderful that you are doing so well.

[LisaMarie]

ok quick update now only on Voiconazole and zosyn now plus tpn and lipid but ate better today so maybe get rid it still waiting on the ID doc to see me today...so no answers yet and on bipap on night only and still in icu ....so i wait