Well....

[Insomniac]

Just want to say to Jacque and Young&sick, even if there are bad results, please keep us updated. I hope you feel better in time. It's just there is so little info on Ritux for me other than those papers that any ...ANY information from you is valuable to read. You're doing a kindness to us who can not try it and don't know much by sharing your experience, whether it is good or bad. Jacque I hope that you are in the group of people who take up to a year after treatment to respond.

 

[Jacque]

I am also not far removed from my 4th infusion. I will say that the month and half after my 4th infusion was the best period that i have had since becoming ill.

Don't get too down just yet, remember that it can take up to a year after treatment for some people to respond and often the illness will flare up as a reaction to the chemo once the benefits have waned.

Did you get kind of remission from any of the infusions.

For me after the third i had about 36 hours where i felt pretty good starting the second day out from my infusion. Then after the 4th i had about a month and half where i could go for 30+ minute walks at night without any issue. Im hoping this kind of exponential improvement continues, but we will see. This illness makes optimism seem foolish at best sometimes.

Hope things improve for you,

M.

Just checkin in to see how you are doing on the Rituxan? I have not had any more infusions... I am taking max dose of Norco right now... 8-10 a day and don't want to have to go up to oxycontin or anything like that... The Valcyte made me nearly catatonic for a few weeks... I am OFF all drugs now and at baseline...crappiness.. and wondering if there is any treatment for someone like me with this chronic inflammitory pain syndrome. Doc K says those are the ones who do the worst on the Rituxan...ugh

 

[Young&sick]

Just checkin in to see how you are doing on the Rituxan? I have not had any more infusions... I am taking max dose of Norco right now... 8-10 a day and don't want to have to go up to oxycontin or anything like that... The Valcyte made me nearly catatonic for a few weeks... I am OFF all drugs now and at baseline...crappiness.. and wondering if there is any treatment for someone like me with this chronic inflammitory pain syndrome. Doc K says those are the ones who do the worst on the Rituxan...ugh

Hey, I am doing ok-ish. Not the huge boost i was hoping for, but im able to walk for about 30 minutes a day which is an improvement for me (totally free of painkillers this time too). Im just now starting to test my limits with more exercise/activities. Also my sleep is terrible at times which has a huge impact on my energy level/tolerance.

I will, however, say that my brain fog is entirely gone. So cognitively, a success. Physically, it is hard to tell, as i have been basically unable to do any real exercise for the past three years, and some of the fatigue post-exertion might be a product of just being out of shape. We'll see.

I was also able to outwrestle a friend pretty effectively the other day after he tried to sneak up on me while i was half asleep and draw on my face with a sharpie (such supportive friends). He is a pretty strong guy so being able to tackle him without fainting from exertion was nice (to be fair to him, 99% of the success was predicated on the element of surprise, he thought I was totally asleep, he is much tougher than me, and was when i was healthy too). This isn't just a superfluous anecdote though, any action which required sudden quick-twitch muscle utilization used to make me feel terrible, and that did not. I think maybe my system just needs to put through its paces a little to get the physical side going. My doctors have told me to push it a little this go round.

PS- Jacque, two questions for you, as you and i are in similar shoes with ritux. Are you taking Valcyte and Ritux together? Had you taken Valcyte before? Also does anxiety seem to trigger a reaction in you that suddenly saps your energy? I have run into this where if i get anxious, it feels like all the energy saps right out of me to be left with that weird sick tired feeling we all know so well. I was the furthest thing from an anxious person before all this, it even now its rare, but when it does happen, game over for the day.

Hope you are well, sorry to be so long winded, Y&S.