Rituximab

[Guest guest]

Hi

I found driving much easier with just half a shot of Jack

's rather than the full shot.

I was able to work as a Dentist which is considered a more

than average stressful job. I saw my usual patient load. No

fatigue.... at all.

Of course,... just teasing about the Jack s. I never

drink. the point is.............Rituximab for me worked

great and had zero side effects.

I had about ten rounds by the time my ALC was pounded down

to 2 from 210.

Hope this helps.

Leo

[Guest guest]

Questions for those who have received Rituximab treatment:

1. Were you able to work during treatment? My plan is to

schedule the treatments for Friday afternoon, rest the

weekend, and return to work on Monday. Is this generally

doable?

2. Can you drive a car directly after treatment? The cancer

center that I go to is about a half hour drive from my home.

I'm planning on having someone drive me to and from the

first treatment just in case.

Any information would be greatly appreciated.

R. (Poconos, PA)

[Guest guest]

Rituxan for me is very tolerable. I have more problems with

the benadryl they give me with it making me sleepy. I have

had full doses over 30 times. It has never made me nauseous-

and I have always been able to function the day after (work

or whatever).

Scheduling on Friday is great. It is nice to not have work

stress the day after. You may have some flu like symptoms

and I have found that I am more irritable the day after.

My wife has always taken me for the treatment-I could

probably drive home but I wouldn't recommend it. Treatment

generally consumes my day. If I get in for lab work at

8:30am, see the doctor at 9am, then I don't get out until

2pm at the earliest.

I used to be able to fast track (where they speed up the

infusion) but I had a bad reaction during administration

(about 15 treatments back) and they won't fast track me

any more.

It is nice to have someone with you to get you lunch and

generally pamper you while you sit there. I sleep a lot and

sometimes take my computer or try to read a book.

I am thankful for what rituxan has done for me the last

eight years with minimal side effects.It is losing its

effect and I am going from quarterly treatments to monthly

(starting Monday) and maybe some stronger stuff to go with

it. I have already done R-CVP.

One last thing, be hydrated when you go, if you don't have a

port it will help the nurse get the needle in your veins. It

may not be an issue at first but the more treatments you

have it may become a factor, it has been for me.

Are you just doing rituxan? or is it being combined with

something else? Good luck.

Mike Cole

[Guest guest]

Hi Mira. It is my understanding that the CFS comes right back in a few months

after stopping the Rituximab. When it was thought that XMRV was the culprit, Dr.

Kogelnik in California was thinking about using Rituximab with antiretrovirals

to prevent recurrence....but now we dont know what infection we have!

xoxo

________________________________

From: Mira Ghoshal <mirasghoshal@...>

Sent: Tuesday, May 29, 2012 3:08:21 PM

Subject: Rituximab

 

Hi Group,

Has anyone tried Rituximab? Has it worked for you or for someone that you know

very well? I have a close friend, who has had CFS for well over 20 years, who

is very interested in it. CFS or the susceptibility to it seem to run in his

family, as his mother probably had CFS and died of complications of diabetes,

but his older sister has it too, although it has not been officially diagnosed

by doctors. My friend has a Ph.D. in material science but as a young man he

wanted to me a doctor, so he reads about CFS as much as he can. He says that

scientifically the method makes sense. To me this seem like a hypothesis that

yet has to be proven in the real world with real patients, whose bodies may not

react the way that the hypothesis seems to work.

What I have read so far about this drug is that it destroys all the B cells in

our body and the immune system has to rebuild itself back up. I have heard that

70% of patients in Norway improve on this drug, but 30% do not improve. My

question is this: What if some of us patients take this drug and we indeed

destroy our immune system and allow it to be rebuild. What are the chances that

our immune system will rebuild itself in a healthy way? What if what is rebuilt

is actually worse or the same as the old immune system? Are people going to go

through hell without an immune system right after the treatments and then come

out worse or the same after the period of rebuilding is over? If there is

success and the immune system is rebuild in the right way, what are the chances

that it stays healthy and does not fall back into CFS at some point in the

future?

Please write back soon!

Mira