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



aewaustin
07-18-2011, 10:59 AM
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
07-18-2011, 11:40 AM
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
07-18-2011, 11:45 AM
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
07-18-2011, 12:19 PM
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
07-18-2011, 01:43 PM
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
07-18-2011, 07:48 PM
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
07-19-2011, 12:35 AM
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
07-19-2011, 12:41 AM
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
07-19-2011, 12:45 AM
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
07-19-2011, 05:12 AM
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!!!

norcalian
07-19-2011, 05:42 AM
I'm sorry to hear about needing to switch to CTX. Is there anyone on the forum that can speak to gaining any sort of remission from RTX only? I know it's relatively new...just wondering what people's experiences are with lasting results from RTX.

Brooke
07-19-2011, 06:54 AM
I was initially put on Methotrexate in 2009, when that didn't work I did the Rituxan in April 2010. That helped a lot! After my B-Cells came back in March of this year, my doctor wanted me to do another round of Rituxan. So, I did that in April this year. Feeling great, hopefully it works forever!

norcalian
07-19-2011, 08:29 AM
I was initially put on Methotrexate in 2009, when that didn't work I did the Rituxan in April 2010. That helped a lot! After my B-Cells came back in March of this year, my doctor wanted me to do another round of Rituxan. So, I did that in April this year. Feeling great, hopefully it works forever!

Did you have to go back on prednisone as well? My Rheumy made it sound like since I did not do CTX that I would probably would not be as likely to get a long term remission and might be doing RTX every couple of years or so to manage flares. RTX is pretty mild, so I wouldn't mind that part...but I don't want to be back on high doses of prednisone every couple of years...it would almost be worth it to do CTX and try to get into a longer term remission. I'm wondering if anyone has been in relative long-term medication free remission (2-5 years...since i believe it's only been in use for about 5 years) with one infusion course of RTX?

Pmarsh
07-19-2011, 11:59 AM
Hello. I've been on CTX basically since I was diagnosed in October. For the first few months I didn't notice any side effects - although I was pretty sick from the Wg's for the first few months. The more doses I had the more I noticed some minor nausea on the first couple days after the treatment. Nothing ondansitron (sp?) or some other anti-nausea drug couldn't handle. I've been working while on CTX. I have a job that can be very physical at times, but was accommodated with office work when needed. I was also given leeway to work from home if I felt really lousy. All-in-all I was surprised with how easy CTX was to manage, although I can't wait to be off it (1-2 more doses fingers crossed). All the best.

Psyborg
07-19-2011, 09:26 PM
I wonder how much difference there is between injected versus oral CTX. I know they prefer oral due to how it works, but I don't know if the side effects are the same for both. I took the pills, and as I said, I had pronounced exhaustion in the mid day, but was still able to get by after a nap with no problems. I'm not sure if injected CTX has the same affect or not.

Chris G
07-20-2011, 03:28 AM
Anna, I'm so sorry the rtx didn't work for you!!

I'm struggling with it now as well. My infusions were 9 weeks ago, and I'm still not able to lower pred below 17.5 without symptoms. My worst fear is that the rtx will fail, and I'll have to take ctx.

aewaustin
07-20-2011, 05:57 AM
Thanks everyone for the comments! Glad to hear that folks are no so knocked out with CTX, makes me feel better about starting this.

Chris - I am sorry to hear that you are struggling too... There were a few of us that did it at the same time and know we all had high hopes for the RTX. Bummer that it is not panning out as well as we had hoped.

I am also curious to see what luck folks have had with long term remission with RTX vs. CTX. Will be interesting to follow this as more folks get experience with RTX.

Brooke
07-20-2011, 07:08 AM
I was not put back on prednisone. I weaned off in 2010 over the Summer. I was put on the steroids in Nov because I wasn't feeling the best but was on them for a short time, i don't remember them helping very much. I was put on an antibiotic from Dec through Feb 2011 for sinus problems and that helped a lot. Then it was April 2011 that I did the infusions again. Maybe it was a little wegs creeping up on me during that time.... sure hope not.

ArlaMo
07-20-2011, 08:08 AM
Oh, I'm so sorry the rtx didn't put you in remission!

I was on ctx for almost 11 months before doing the rtx infusions - the first month, I struggled a bit, but a daily nap was so helpful. I don't work, but I have six children and managed to keep up with almost all their comings and goings throughout the treatment. I did lose most of my hair :sad: but it is about three inches long now :thumbup:

aewaustin
07-22-2011, 05:02 AM
ArlaMo - Thanks :) Well if you can keep up with six kids then I should be able to keep up with work. YAY on the three inches of hair! Not looking forward to that but, but right now will do anything to be healthy...

Sangye
07-22-2011, 08:45 AM
I don't work, but I have six children :
:blink::blink::blink:

marta
07-22-2011, 12:23 PM
Hey Buddy, it will all be great. Like I've said to you before, you're gonna kick this 'old school' - i.e. back into remission for a long long long time. I think that you'll have no problems with it and it'll be way easier than the first time - you run marathons remember :thumbsup: It's too bad that we have to take the pred along with the chemo - otherwise I would have shaved my hair off in a blink, but the pred has so altered my face and neck and the lovely humpy lumpy on my back, shaving is not really an option.

See you on Skype when your internet is back up.

aewaustin
07-22-2011, 11:28 PM
Thanks Marta, yep going old school :) Going to the doc today so should know more soon. I am registered for the Austin marathon in February, that *might* be a bit of a stretch, but I am keeping my eye on the 1/2. Just want to get on with it and be healthy, which I know is possible because I did it before.

And I don't want anyone to say anything negative about me wanting to do a 1/2 or full marathon in February, I get it, but I have to have goals to challenge myself. Sorry just had to say that :)

Psyborg
07-23-2011, 12:33 AM
Oh, I'm so sorry the rtx didn't put you in remission!

I was on ctx for almost 11 months before doing the rtx infusions - the first month, I struggled a bit, but a daily nap was so helpful. I don't work, but I have six children and managed to keep up with almost all their comings and goings throughout the treatment. I did lose most of my hair :sad: but it is about three inches long now :thumbup:

I'd say 6 kids IS work. I have trouble chasing 2 kids around :)

marta
07-23-2011, 03:25 AM
You go sister. You and Pmarsh are really getting me inspired. I've pulled my bike out and my treadmill and I are getting more aquainted. Like Jack said in another thread (not in these words, but it's congruent with the way I feel) you don't know what tomorrow holds so make hay while the sun shines. And it's great to have some goals.

ArlaMo - I bow to anyone with more than one kid. SIX?????? you are a goddess!!! My one 4 year old going on 16 has a way of making me run circles every day.