CTX in my future... RTX did not work for me :(

[aewaustin]

Well... Looks like I will be going through another round of CTX, first was in 1992, tried RTX this past April but just suppressed the Weg's for a bit and now it is back and going at my kidneys. Total bummer quite honestly, but it is what it is. So I have done this before but it was a long time ago. I have the doctors notes from 1992, which are very helpful, but I guess that I am looking for a heads up on what folks have experienced for the first two months or so. I remember really bad nausea from the first time and I did lose my hair (which sucks as I have long hair that I really like). I have a demanding job with a tech start-up, thankfully I work from home but my company is expanding and I need to be on top of things. Last time I went to school full time when I did the CTX and just curious how tired folks get, really hope that I can keep working because I really can't (and don't want) to take time off. I am single and live alone so much of my daily interaction is with work and I think it is good for me to keep working and to have something else to focus on than having Weg's and going through CTX.

Anyway just thought I would update and would appreciate any tips and tricks on what is helpful in the first few months Thanks!

So thankful to have this forum to post to... Did not have this luxury in 1992 and am so appreciative of it now.

[elephant]

I am sorry to hear that. When I was 15 I was put on cytoxan to save my kidneys but it wa too late. Sounds like your doctors are on top of this. What is your creatinine?

[delorisdoe]

Can I ask how long you were on cytoxan back then? I was able to work ten hour days on my feet but I was ten years younger and I was working 4 on 4 off. Also, I was so sick before treatment that once the treatment started I felt better than I had for a year so I think I was just happy to be feeling better. I am so afraid of being put back on cytoxan-keeps me up at night.

[Sangye]

I'm so sorry to hear the rtx didn't work for you! I did very poorly on ctx (and later learned it's overly toxic to my bone marrow) so I'm not a good one to ask about continuing to work, etc.... That wasn't even a possibility for me.

It's probably best just to take things as they come. Have a Plan B for work in case you're too sick or tired to work.

[aewaustin]

Elephant - Thanks My creatinine is normal so far, it is just blood and protein in my UA's. Because of my history we obviously keep a close watch on my kidneys...

Leigh - It was 19 years ago today, actually, that I started CTX and was on it for 9 months. It put my wegs in full remission for the majority of 18 and a 1/2 years so it worked well for me. Weg's flared enough for me to go through all this in December 2010, but until then I had not taken any meds since May 1994 (for the most part anyway). Try not to be afraid of CTX, worrying is just wasted energy on negative stuff that you can't control...

Sangye - Thanks... I just hope that I can redo the success that I had the first time. I am hopeful, and am so sick of being sick (as I know you can relate) that I am ready to just get on it and get going. My work will let me take time off if needed and they are super flexible, but I just don't want to have to take off. Will see what CTX does to me this time and will just roll with it. After all, that is all you can do...

[delorisdoe]

I was on cytoxan for 2.5 years. I am not afraid of it but I actually was on it longer than I was suposed to be so If they put me on it again I would have to run the other way. It for me would not be wasted energy and it would be something I HAVE to control. My thoughts were that maybe since you were on it so long ago, maybe you too were on it for to long. nope.

[Psyborg]

I was able to work from home with no problems (Actually half in the office then nap, and half a day at home). If you can arrange your schedule to give you some down time I don't think the sleepiness will be overwhelming. But that was for me, everyone seems to experience things differently.

[NicShaf]

aewaustin, I started Ctx earlier this year. I was pretty tired, but continued to work full time...I'm an Administrative Assistant, so it's office work. I found it helpful to take a cat nap on my lunch hour, I'm not sure if you have this luxury or not? I did feel nauseous a lot, but I think it was more the Preds effecting me than the Ctx, but I guess there is no point in splitting hairs like that, I was a bit sick most of the time.
But, for the most part, I didn't find Ctx to be that bad, I think I tolerated it pretty well. I hope since you had such good luck with it before, you will have a good experience with it this time around. Best wishes to you!

[Brooke]

I'm sorry to hear the Rituxan did not work for you. I haven't had Ctx so I am no help to you on that subject. That sounds like a long time you were in remission though!!

[aewaustin]

Bob and Nicole, Thanks! Yes I have total flexibility for cat naps, so what you say makes me feel good. I am SO blessed to work for folks that are bending over backwards to be accommodating. They have said that I can do whatever I want, work, not work or whatever so if I am just needing to take a nap then we would be good to go. I remember the constant nausea and am not looking forward to that (or the hair loss) but knowing how long CTX put me into remission gives me hope...

Brooke, Thanks, yeah I had high hopes for RTX, but, sigh... It did help get me to a daily functioning level so happy with that. Before the iv's I was almost to weak to take a shower, so it bought me some time. And I would have wanted to try it before doing CTX so it is good I had that chance. Hope you are doing well!!!