Might be RTX'ing too

[Psyborg]

Well, my suspicion that i might not be under control is looking to maybe be correct. Nothing is confirmed yet, but Dr Villa Forte mentioned RTX today, and I mentioned that the Pulmonologist had made a similar suggestion so I believe they may be looking into it very closely. I'm not as sick as last year, but I don't think MTX appears to be complete shutting stuff back down after my mini-flare.

My situation is that I am down to 5 PTO days to last me until February. With RTX requiring multiple infusions and the possibility of taking me down a few pegs I was wondering if I should be planning to take a short leave from work. If I go to leave I have salary continuation and won't end up borrowing Sick/Vacation time fro next year. Just wondered if I'm going to feel like that was overkill if I ask for it?

This assumes I do end up doing RTX, but my gut says it is probably going to happen.

[Chris G]

Rtx has worked really well for me....and I think for many others too. I really can't say that the infusions themselves had any real ill effect on me. I had them on fridays... but I'm sure I could have worked the next day if I had to.

[Psyborg]

I guess I need to see what they say regarding infusions. If it is two infusions I may be able to do that, if it's four I just don't have the PTO time left to do it. If I get sick in the next four months it would be without pay.

[aewaustin]

Bob, sorry to hear about the time situation at work, so difficult to have to go through this and then have to worry about that. When I did RTX the first time I was pretty worn out that day, but it was just the day of the infusion that I had issues, and the other three times I did it I was fine. But if they do four infusions that is four days off work... Only issues I had were night sweats, and that is nothing in the scheme of things...

Anna

[Yvonnea]

It's a really hard call to make because you just don't know how it will affect you. I had my first infusion a couple of weeks back and felt fine the next day.
It was nothing to how I felt on Cytoxan, were it flattened me for days after. Is your boss understanding? Could you say you may need time off if the worst comes to the worst and you feel rotten. Hopefully you will sail through the infusions and not need any time off....just don't work too hard.

[Psyborg]

She is understanding, but does follow the letter of the law as well. I'm a bit less concerned today. I figure I should probably wait and see what the doctor says first. Just wish I wasn't feeling ill right now.

[delorisdoe]

I work on my days off when I know I will need a medical day off. It helps that I can pick up a shift on the weekend in place of my regular shift. Also, in Canada, the employee by law has the right to take a day off in place of holiday pay. I have a specialist appointment on september 8 so I am putting in a request to not get paid extra pay for labour day and will have a paid day off. In Canada my boss does not have the right to say no to this request. Well actually, the day I chose to have off has to be one that is convienient for them but considering the alternative-me calling in sick with pay-they are always accomidating.

[Brooke]

I'm sorry you have to worry about work and Rituxan. Rituxan seems to be working for me and the infusions went well.
I would also say, maybe do them on a Friday incase you are a little tired or worn out the next day.
Do you have any family or friends to help out with money situation?

[Sangye]

Bob, I am not the one to ask about rtx side effects. LOL The chances of you getting wiped out for 6 weeks like me is very, very low. In fact, I'm thinking of not allowing any more members into that particular club.

How far in advance would you have to give notice for a leave of absence?

[Psyborg]

It's pretty rapid for the LOA notice. I really don't want to broach the subject until I know for sure it's happening.

Basically at my job they combined our vacation and sick time a couple years ago. I ended up with so much time I was ecstatic, then I got sick. Every time I go to Cleveland I burn a day of vacation time. I (probably foolishly) took a vacation to Disney with the kids this year, but I've had enough issues and visits to doctors that I'm down to 5 days to last through January. One good cold and I'm seriously having issues.

That said to go on Leave I have to burn 5 days of PTO first anyway (one week waiting period). That means that either way I'll end up in the same boat.

I think the issue is that a couple times in the last year I should have taken a bit of leave but decided not to because I wanted to not leave my team short a body, but now I'm almost painted into a corner. I'll talk to my manager and see if we can work around it.

[Sangye]

I'm sure your manager will find a way to make it work for you, Bob.

Please don't feel bad for taking time for a vacation. Wegs is here for the long haul but your kids won't be young for very long.

[Psyborg]

My manager was very understanding so that is good :)

I have a question now on RTX. I know it targets the B cells, does this render you precisely as immune suppressed or is it slightly less so due to the non-b-cells being unaffected? I honestly don't understand the working of the B-Cells versus other cells.

[Sangye]

Generally speaking your immune function after rtx is about the same as with taking ctx. You will have to be just as careful and use precautions.

[Psyborg]

That was kind of what I thought. I already plan to put the gym membership on hold for a bit as gyms are notoriously filled with germs. Just as a guess, how long will I need to be extra careful (as opposed too the general carefulness I've been having anyway :p)?

I had to stop with the gym last week as I just didn't have the energy...which is what was the lynchpin that something was definitely wrong for me. I just wonder how long I need to ask them to put me on hold for.

[Sangye]

Rtx will continue suppressing the immune system for up to a year. You can go to the gym when you're feeling stronger--just be careful. Go when it's less crowded, and take a shower at home if you can.

[Psyborg]

I always do the shower at home...even before. The bathrooms in gyms are too dirty for my tastes.

[Sangye]

It's mostly the steamy air that's the big risk in locker rooms. It holds more germs. Bleh.

When I'm able to go to the indoor pool I never go right after a big class has let out. I wish I could go to the outdoor pool in good weather but I'm not able to tolerate any sun.

[Psyborg]

First dose tomorrow morning. Crossing my fingers, hopefully this goes nice and smooth.

[DEE]

Good luck for tomorrow Bob ,

[Sangye]

Yay for you, Bob! Don't worry-- you'll do fine.

[Psyborg]

First infussion down. Tired, but not sure if that's just because I got up at 4:15 am...nerves and Pred are a bad combo lol.

Also wondering if I'm supposed to stick on the MTX...I never got told 100% if I was supposed to stop MTX once RTX started.

[pberggren1]

I was on aza when I started the rtx infusions and my doc told me to go off the aza until a week after the last infusion. I would ask Dr. VF just in case.

[elephant]

Glad you did well on your RTX infusion!

[Sangye]

Yay for you, Bob! Are you doing 2 or 4 infusions?

[Psyborg]

Two infusions, going back the 16th for second infusion.

[Brooke]

Glad it went well :)

[Psyborg]

I think the RTX has finally caught up to me. It took a few days, but now I'm having the dizziness again that I associated with CTX in my first round last year. Not sure if that's just "the way I feel" suppressed.

I'm really wishing I'd have just ignored my hernia repair at this point. It was painful, but I'm kind of disgusted that I ended up back up to 40 mg of Pred and back on heavier chemo. In effect it was my own choice, which is the aggravating part.

[Sangye]

Bob, you made the best decision you could. Wegs does its own thing, and leaving a hernia uncorrected has its own risks.

[Psyborg]

Thanks Sangye, and I know, but was having a bad day on Friday. I hate the feeling I get during treatment I think. My head feels like it's full of cotton, nice painful headache right between my eyes, and almost feeling like I'm watching myself in the third person. I had thought the first time through treatment it was how CTX made me feel, but not I'm guessing it is either a late arriving flare symptom, or for some reason I'm able to discern some sort of affect of being suppressed.

Stress at work isn't helping with the headaches either.

[Sangye]

I'm so sorry, Bob. It sounds like toxic sludge. It can affect you physically and emotionally. I hope whatever it is will clear out soon.

[Psyborg]

Probably :) High dose of MTX and RTX is probably plenty of chemicals :)

[Sangye]

Are you still on mtx? That's probably the culprit.

[Psyborg]

Yeah, and a higher dose than it had been as well. They raised it right before I went on rtx.

[Sangye]

My money is on the mtx as the trouble-maker. It's not much money, though. :biggrin1:

[ScreaminMeanie]

So glad you're doing the RTX, Bob. Hope you're feeling better soon.

[Psyborg]

Tomorrows my second infusion. I'm wondering if my doctor will stop by or not. I'm not even sure she's in on Fridays.

[Brooke]

Good luck today:)

[Sangye]

Good luck, Bob!

[Psyborg]

The benedryl knocked me out hard today. Slept through 90% of the infusion this time.

[Sangye]

LOL That happens to me most of the time, too. Glad you're done! :thumbsup:

[pberggren1]

Yup, I got knocked out for most of my infusions as well. Shortly after the infusion started I got very sleepy. They always had to wake me for lunch........lol

[drz]

The benedryl knocked me out hard today. Slept through 90% of the infusion this time.

I think sleeping is often the best way to spend the time when getting a transfusion. They will wake you when it is over.

[Psyborg]

First infusion they only gave me one Benedryl and I was awake the whole time...boring! :)