Anyone take Cytoxan chemotherapy?

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momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 4/4/2008 6:03 PM (GMT -7)   
I just had my 3rd round this week and have been really sick from it.  Wondering if anyone else has experience with it and what you've done to help the side effects.

applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 4/4/2008 9:00 PM (GMT -7)   
I took it twice. IV form in '98 when they tried to stop my kidneys from going into failure (didnt work) and in '03 oral treatment that i could not finish because my white blood cell count kept going down whenever they would put me back on after taking me off for a day or two. The only side effects i remember was my hair falling out, and that i had to be very careful not to get sick because i was already immuno-suppressed. I'm really sorry i dont have anymore I dont actually remember a lot of it. but i hope it works for you better than it worked for me.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 4/5/2008 7:29 AM (GMT -7)   
I did it back in 2000 for 18 months. It made me sick, too, so I complained to my doctor. He prescribed me an anti-nausea pill that I would take about an hour before I began the iv treatment. It worked great. Hope this helps.
 
Robin
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day
wife, mother of three


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/5/2008 8:49 PM (GMT -7)   
Hi Mom,
   I had Cytoxan Infusions in 2005 when lupus attacked my lungs. Before each treatment I was told to drink alot of fluids for 24 hrs and when I went in for the infusion they gave me 500cc's of fluids, Iv nausea meds, Iv meds to protect my bladder, then the Cytoxan followed by 500 more cc's of fluids. As soon as I got home each time I took phenegran for nausea and every 4 hours for at least 3 days. I would also continue to drink alot of fluids during that time.
   I still had some light nausea, flu-like symptoms and more than normal fatigue for about 3 or 4 days after each infusion. My hair also thinned out a good bit.
   I know the treatments aren't fun....((Hugs)). I'm so glad I got them though. It cleared my lungs from nodules, scars and infiltrates.
   I hope this gets easier for you. Please keep us updated and rest all you can after each treatment. You will be in my thoughts and prayers.
                                                                    Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 4/6/2008 7:22 AM (GMT -7)   
Thanks for the advice.  I did Cytoxan for over a year back in 1999 but I don't remember these side effects.  After one  month of treatment I lost all my hair.  The nausea and vomiting this month were really bad.  I'm not doing the mesna this time and my bladder is really irritated.  I need to talk to my RA about that too.  Thanks again!
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/6/2008 9:49 AM (GMT -7)   
Hi Mom,
   I'm glad you will be talking to your rheumy about the Mesna. They really need to be giving you that. I hope your side effects ease off soon...((Hugs)). Please take care and keep us updated. You are in my thoughts and prayers.
                                                                 Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 4/8/2008 8:56 AM (GMT -7)   
Hi there,
 
I have been on this site before my daughter who was 17 last year suffered from CNS Lupus that was affecting her brain.  High doses of prednisone wasn't helping her condition so she started cyclophosamide in August 2007 and had her last Feb 6th 2008.  She kept her hair till half way and then she lost it.  Rheum said it would just thin, so that was disappointing but she took it in stride.  She now has about two inches of hair, very thin but she looks cute all the same.  She was very sick after chemo, took medication perscribed and they helped a little, she just stayed on the couch and perservered.  Mesna was given before and after Cyclo by IV then she took mesna again so many hours after Cyclo at home by capsule(we prepared the capsules).  This is very important as it protects the bladder.  Cyclo can cause bladder infections and even cancer long term so it is very important to get perscribed.  She is now trying to get used to taking her newest drug Cellcept, it made her vomit for a few weeks while she build up the dose and is now just nauseated with headache at 750 mg.  She will move up to 1000mg in a day or so.  She is right now suffering again with sore joints, daily headaches and extreme fatigue plus extreme constipation(she has been hospitalized many times for this).
 
It has been a difficult road, but so far the cyclo did resolve the serious effects of Lupus.  Lets just hope cellcept keeps her in check.  I hope your journey with cyclo goes as well as can be expected.
 
Sharon
 
Sharon
Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke


momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 4/8/2008 6:29 PM (GMT -7)   
Sharon, thank you for sharing your daughters story.  I'm also taking cytoxan for CNS lupus.  I finish cytoxan in July, and then i'll go back on cellcept as well.  My body is really tired, and I'm not sure how much more of this I can take.  We had to schedule another surgery for 2 weeks away.  The dr's are going to try and fix my hip.  I developed AVN from high dose steroids in 99, and had a core decompression done.  My pain has come back and I need a hip replacement.  I'm on 30 w/two little ones 4 and under, I can't do a hip replacement for a few more years.  The dr is going do a few repairs to the hip to try and easy my pain a little.  I hope it helps.
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 4/9/2008 6:23 AM (GMT -7)   
Hi Babs,
 
That must be difficult with 4 children, dealing with a illness.  I am a young 47, I fractured my hip in 2002 the first summer we had our pool, fell the wrong way tore the inside lining of the socket and fractured the socket bone.  I had a hip scope done to smooth our the socket as it was very painful.  It was difficult to find a surgeon that does this procedure in Canada.  I travelled 10 hours to find one, and I did the homework to find one I might add.
 
I was told also on follow-up that I should have regular checks on my hip, as I have also been on steroids many times in my life, now on endocort a softer steroid.  I usually get bone scans to check bone density as well.  I have  autoimmune diseases that fatigue my body on a daily basis, it's hard with children, job, housework etc.
 
I also know how much Lupus effects my daughter who was so energetic, athletic and young and full of life and to have that taken away from her.  I would love to take her pain on myself than to see her suffer.  I guess us mothers need to be strong.  
 
All the best to you.
 
Sharon   
Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke


momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 4/9/2008 11:03 AM (GMT -7)   
Sharon, I had a hard time finding a dr who does hip arthroscopy as well.  I didn't realize it was so specialized.  I go in on the 22nd.  He is hoping to fix cartilage damage, remove bone chips, and smooth out the femor.  How was your recovery?  I'm hoping it's not too bad, I'm exhausted as it is.  thanks!
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 4/9/2008 12:05 PM (GMT -7)   
 Yes, I did some homework, I had a hip arthroscope first which is a MRI, with dye (a radio-isotope) injected into the joint.
 
It was day surgery, the doctor partially dislocates the hip and is careful to protect a improtant nerve there. I had allot of students hanging around I am sure I was the lesson of the day.
 
I went home a long drive ahead of us, they suggest spending the night at a hotel, I opted to be on drugs and sleep most of the way home and get into my own bed.  I was vomited once at the begining and was fine.  There was still freezing in the joint so I wasn't too bad with pain.
 
The discomfort was minimal, with medication.  Got around on crutches, I opted to stay off the hip, but you can weight bare when you feel comfortable.  One thing that concerned me initially was that my pelvic area was completely numb, I worried about that nerve they talked about.  The feeling took about a week to fully return.
 
I would suggest some help to come in to take care of your wee ones, to give yourself some healing, it will be a couple of weeks before you are completly somewhat pain free.  I was very cautious, as I wanted this to be successful.
 
I sometimes feel very rarely a little twinge from the hip if I stand a certain way, but the surgery has been very successful, I had my doubts. 
 
If you have any questions don't hesitate to ask, let me know how you fair.
 
Sharon
Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke


momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 4/9/2008 6:04 PM (GMT -7)   
Thank you Sharon!  I feel a lot better about the surgery after hearing your story.  I've been really nervous about it.  This will be my 18th surgery in 12 years.  I was worried about recovery time w/two little ones.  My DH is going to stay be home from work for a week to help me out.  With the cytoxan, I don't have any energy right now.  I'm worried the surgery will drain what energy I have left.  I''m looking forward to the pain releif though.  My hip hurts non-stop and I've been taking pain meds for months to help with it.  I'll let you know how it goes.  My surgery is scheduled for April 22nd at 8 am. 

mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 4/10/2008 5:49 AM (GMT -7)   
Good Luck,
 
Yes tell me how it goes.  Take care of yourself.
Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke


cabrita
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/2/2008 10:52 AM (GMT -7)   
mom7;
I read that you had hip arthroscopy - I am sopposed to have that done soon as well but the wait list for doctors is so long in Ontario, - where did you go & how long did you have to wait? I'm loooking at 6 months just to get in to see the surgeon after my 3 month wait to see a hip specialist who couldn't do the surgery...very frustrating! thanks!

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/2/2008 8:02 PM (GMT -7)   
Hi Mom:

I took 9 months of oral cytoxan and 3 months of the IV cytoxan. I have to say that the cytoxan did help with my lung issues, but my oncologist believes that the cytoxan is what has caused me to have MDS or blood cancer like leukemia. I'm now going to need a bone marrow transplant if I hope to stay alive and live to be an old lady. It also ruined my bladder and it's a mess, I have blood on and off all the time in my urine and the scope they did of my bladder showed that the bladder is totally ruined.

I hope that your experience with the cytoxan is better and you have no lasting serious affects from it. I have troubles with weight loss and vomiting while on it. I lost all my hair and my white count and red count was always very low. I had a serious problem keeping my counts high enough to get out, I was way way to immuno suppressed.

Wishing you the best, and if I can answer any other questions, please feel free to ask.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/3/2008 7:07 AM (GMT -7)   
Welcome to the forum Cabrita !!

I'm SO sorry you are having so much trouble and having to wait SO long to see your specialists. I hope you will start a new topic and introduce yourself to the the other members. Most won't see your post here. They'll want to say hello too!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/3/2008 7:10 AM (GMT -7)   
Hi Momof2 !!

I hope this gets easier for you. *sigh* I remember when a couple of the other members were receiving cytoxin and it didn't sound fun. Don't forget that you can also use the Chat Room if you want to talk to someone. (((((((((( hugs )))))))) I hope you at least feel better between treatments.

Keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/6/2008 10:25 PM (GMT -7)   
I also did 9 rounds of cytoxan a couple of years ago. I got iv zofran prior to each treatment and they gave me samples of sublingual zofran to bring home. You just stick them under your tongue and they melt. Ask your oncologist about them! God Bless and Keep you, Judy

rere7896
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 8/14/2008 1:34 PM (GMT -7)   
Hi there,
I did Cytoxan every month for almost two years and then decided to quit. I was off for about 6 months and started doing it every three months and now am back to every month. I get mezna,decadron, and zofran by IV before the cytoxan and after it and it helps me I find. I also have my promethazine at home to take prn. I was lucky and started off with very thick hair but it's blonde so when it got really think I just cut it very short. Since my hair is curly it kind-of worked but I've been trying to grow it long again and it's pretty long now (at shoulders) but I'm sure it'll thin again. But if it helps I guess it's worth it..... I work in the cancer field so I knew going it what would really happen and maybe that's why it wasn't as hard for me. You know they do have suckers (if u want to try something else) that help with nausea (a lot of people call them "preggy pops" -- I see them with my patients. 
Good luck and I'll keep you in my prayers if you don't mind....


Good luck to everyone and may God Bless you everyday.....

I'm currently taking atenolol, verapamil, ovcon (no cycle since 2000), prednisone, neurontin, cytoxan, folbic, diludad, loratab, demerol,(depending on severity of pain), promethazine, singulair, lasix, amitriptyline, baby aspirin, patanol --- I think that's it...

I have SLE, SVT, MVP, Sjogrens, Fibromyalgia, Neuropathy, migraines, Pleurisy, asthma, endometrosis, Reynauds -- think that's it as well....

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