Cytoxan

[elephant]

LisaMarie so nice to hear that you are getting what you need. In time you will feel better! Really, just be patient. Get a good rest today.

[wgrebel]

My main problem with Cytoxan was the groggy/fatigued feeling all the time. My dad told me the night I was released from the hospital this most recent time (July 21) that it was the first time in a long time I did not have that tired/fatigued look on my face. After work or anything I would just be wiped out. Protonix & Prevacid controlled the nausea while I was on the Cytoxan. I can speak from personal experience when I did not have the protonix or prevacid (30 mg prescription & not the OTC stuff) after my October 2009 hospital stay it took about a week of being on Cytoxan before the stomach/nausea problems hit. I had severe stomach pains and one night suffered with nausea and stomach cramps for about 12 hours. I got very weak and scared to each because I had crippling stomach pains every day from around November 3 or 4 until November 13 when I was rushed to Memphis Baptist (for the second time) from my local HP. Doctors administered every stomach & GI test known to man. I had the light down my throat & they watched me digest an egg over a four hour period. What a great experience. I started oral cytoxan upon my release November 24. I was also prescibed protonix 40 mg in the AM and 40 Mg in the PM and I had no more nausea or stomach problems. I switched to 30 mg prevacid 2X a day May 2010 and still no nausea or stomach problems on the CTX. I hate CTX but as we all know it is a necessary evil if you have WG.

Sangye, I have heard that it (Cytoxan) is also a type of "break glass in case of emergency drug" for WG if you are on another maintenance drug (cellcept, imuran, ect) and they stop working or you flair really bad. Is this correct?

[LisaMarie]

My main problem with Cytoxan was the groggy/fatigued feeling all the time. My dad told me the night I was released from the hospital this most recent time (July 21) that it was the first time in a long time I did not have that tired/fatigued look on my face. After work or anything I would just be wiped out. Protonix & Prevacid controlled the nausea while I was on the Cytoxan. I can speak from personal experience when I did not have the protonix or prevacid (30 mg prescription & not the OTC stuff) after my October 2009 hospital stay it took about a week of being on Cytoxan before the stomach/nausea problems hit. I had severe stomach pains and one night suffered with nausea and stomach cramps for about 12 hours. I got very weak and scared to each because I had crippling stomach pains every day from around November 3 or 4 until November 13 when I was rushed to Memphis Baptist (for the second time) from my local HP. Doctors administered every stomach & GI test known to man. I had the light down my throat & they watched me digest an egg over a four hour period. What a great experience. I started oral cytoxan upon my release November 24. I was also prescibed protonix 40 mg in the AM and 40 Mg in the PM and I had no more nausea or stomach problems. I switched to 30 mg prevacid 2X a day May 2010 and still no nausea or stomach problems on the CTX. I hate CTX but as we all know it is a necessary evil if you have WG.

Sangye, I have heard that it (Cytoxan) is also a type of "break glass in case of emergency drug" for WG if you are on another maintenance drug (cellcept, imuran, ect) and they stop working or you flair really bad. Is this correct?

was that with iv cytoxan or po that made you soo sick...I really hate the IV stuff

[Sangye]

Sangye, I have heard that it (Cytoxan) is also a type of "break glass in case of emergency drug" for WG if you are on another maintenance drug (cellcept, imuran, ect) and they stop working or you flair really bad. Is this correct?

Yes, there are only two "big gun" drugs that can be used to control highly active Wegs-- cytoxan and rituximab.

[LisaMarie]

Ok here it goes...the Doctor offfice got written confirmation that Aetna will pay for 4 weeks of rituxan....now they will work on blue cross blue shield....why only 4 weeks not sure...should know when it will start by tomorrow....and how often...atleast i hope,,,,need to have lab drawn on thursday to see what the cytoxen has done....amazed 1 gm iv can make me soo tired and give me sores in my mouth and gi issues....hoping my labs will be ok....i hope i can handle the rituxan and that it works....so any advise on the first dose of rituxan.....any pointers????...yes finally some good news

[Sangye]

I'm glad they got it authorized (at least Aetna). If you need more rtx after this first round, it probably won't be for 6-9 months, so worry about that when the time draws closer.

For rtx, make sure you have someone drive you. The first infusion takes the longest-- about 6 hrs-- because they have to start it slowly and make sure you tolerate it okay. It seems to be a toss of the dice as to how it affects people. Some don't notice anything and are able to function normally the next day. Some (like me) are very weakened by each infusion and take weeks to bounce back. For me it's like getting a reverse blood transfusion, and each week is even worse. I start to recover 2 weeks after the round is finished.

[LisaMarie]

Thanks....Sangye....I think it will be weekly x's 4 weeks but not sure...hoping it will be infused on friday to give me the weekend to recover...I am hoping for no side effects or minimal.....since everything else made me sick...maybe this will be my golden pearl.....I Hope and pray it puts me in remission and helps control my trach issues......i want you to know how much I appreciate all of you.....thanks

[JanW]

What are your trach issues, Lisa Marie?

I'm sure your doc has explained that tracheal, subglottis and saddle nose issues don't run parallel to disease course (meaning that even when your disease is well controlled any of these issues can worsen on their own). You have to get your disease controlled, obviously, but your shouldn't be surprised or concerned if it does nothing for your trach (assuming your issue is scarring, not simple inflammation). My disease is actually being well controlled now (not remission) but my subglottis is re-scarring, exactly how Dr. Lebovics anticipated it would (though, thank God, not as quickly). They know that WG starts this problem, unfortunately they haven't found anything medically that will stop it.

[LisaMarie]

What are your trach issues, Lisa Marie?

I'm sure your doc has explained that tracheal, subglottis and saddle nose issues don't run parallel to disease course (meaning that even when your disease is well controlled any of these issues can worsen on their own). You have to get your disease controlled, obviously, but your shouldn't be surprised or concerned if it does nothing for your trach (assuming your issue is scarring, not simple inflammation). My disease is actually being well controlled now (not remission) but my subglottis is re-scarring, exactly how Dr. Lebovics anticipated it would (though, thank God, not as quickly). They know that WG starts this problem, unfortunately they haven't found anything medically that will stop it.

I have trach stenosis subglottic....it was repaired in february when I was 90% occluded...and in May got sick and am stenosised to 50%...I remain on humidified air 75% of the time....have an isotonic hunidifer at work and at bedside ....the one at home i move around as i need too.....I get both scarring and inflammation...I am suppose to see My ototlarginologist with any ting og change but since the meds cause some of the same symptoms i am not always so Johnny on the spot in follow up.....the goal is to prevent a trach and keep my airway open.....I know it is a "side effect of the WG and not a indicator or the stage of WG...I just hate it....I also have right sinus, right jaw ...Thinking Right ear..right parotid glands and heart involvement per echo.....my ef is 55% but i have thickening of the septal wal in the left ventricle....i did get approved for 4 weeks of rituxan...yeah...but not sure when we will start ..Had my first IV cytoxan last week and would rather not take it......I just get so fustrated because some of the data that you read sounds so good as far as prognosis goes but them when you speak with people who are actually living with WG ...it s not a bright and bubbly as u may think....i wish i could go to the convention...but it is not finaicially possible so please share as much info as you can..thanks

[LisaMarie]

yeah news for me...I finally have an infusion place...my hospital outpt clinic will give me my ritixan.....700mg weekly for 4weeks....not sure if i am starting in 1-2 weeks...they r even giving me the first dose.....if i did it at the doc office the contractual agreement would not cover the drug.....so finally.....good news .:..am still tired a lot and sore sang old sore achy bones labs on cytoxan were ok so hewould have to increase my ivdose so happy to be switching ...hope all is well with u all