Cytoxan. Lots of questions. Really scared. Kind of ranting.

SoleSinger

Hi everyone!

Me again, the one who wasn't going to participate on this board... LOL!!

My doctor is going to put me on Cytoxan. I have done a lot of research on Cytoxan and the side effects and chemotherapy and all that good stuff... My real question is... (My real questions are)

How common is it to use chemotherapy to treat lupus? Does this typically mean that the lupus is really agressive? Or is it usually just a way to beat it into remission? They are also progressively raising my CellCept to 3g/day... Where I used to only be on 1g/day.

How many people here, are or have been on Cytoxan or Chemo to treat their lupus?

Could this be worse than what I thought it was? Does anyone know the odds that this will help? Because I know that in cancer sometimes the odds that chemo actually works is only like 50/50...

Also, does anyone know if ther is any difference in side effects or duration, or anything between taking Cytoxan in pill form as opposed to IV form?

Also, I wonder what could happen if I opt NOT to do the chemotherapy... Could it potentially kill me, or will it just slow my getting to remission? And the reason I ask is because of the potential that I might have to quit my band if I go on chemo. Everything is so unpredictable already and I feel like crap almost all the time right now. I can't imagine chemotherapy will make me feel any better. And if I have to quit my band... which is basically my reason for being, I'm afraid that I might lose my drive altogether.

I am really really really scared. I can't stop crying, and I haven't even started the treatment yet!!! I have a call in to my doctor to ask her all these and more questions... But, if anyone has any insight, personal experience, whatever, I'd really appreciate it...

Any help would be greatly appreciated.

Thanks!
_________________
"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

hippimom2 · Kitten Joined: 15 Jul 2005 Posts: 143 Location: Iowa

SoleSinger, I can't help a lot with your questions since I don't take cellcept. I just wanted to let you know that I'm sorry that this is happening to you and that you have to make such a hard decision. I think chemo treatment for lupus patients with organ involvement is fairly common and I have heard about it halting kidney damage and saving lives. I'm not sure how extensive your kidney involvement is. I have a cousin with RA and she gets an infusion each month (not sure which med) and she couldn't function without it.

With all the questions and fears you have you may want to ask for a consult with your doctor and have a list of questions to go over with him. I hope someone else can give you some more info. Let us know what you find out and what you decide. Take care.

Saysusie · Posted: Sun Oct 02, 2005 2:24 am Post subject:

Hi Solesinger;
I don't know if I can answer all of your questions. However, one of the factors of Lupus is the dysfunction of the immune system. Chemotherapy drugs (such as methotrexate and cytoxin) are immunosuppressant drugs and as such, are pretty routinely used when treating Lupus (especially active lupus with multi-organ involvement).
Methotrexate acts by altering the body's use of folic acid (a vitamin), which is needed for cell growth. By inhibiting the activity of the immune system and slowing the rapid growth of cells in the synovial membrane that lines the joints, Methotrexate reduces Lupus inflammation.
Cytoxan has been shown to be quite effective in some patients with lupus. Most commonly, it is used when there is kidney involvement, however, it can be used in other instances too.
Although immunosuppressive drugs can have serious side effects, they can be of great value in the treatment of systemic lupus erythematosus. They may help to:
prolong life
preserve kidney function
reduce disease symptoms
reduce damage to vital organs, such as the kidneys and lungs.
sometimes even serve to put the disease into remission.
Immunosuppressive and cytotoxic drugs are used in the treatment of lupus for two major reasons:
They are potent drugs which help to control disease activity in major organs, including the kidney, brain, cardiovascular system, and lungs.
They may reduce or eliminate the need for steroids (cortisone derivatives such as prednisone).

Cytoxan can be given as oral tablets, but more often is given through the vein (intravenously, or IV).
This procedure generally takes between 15 and 60 minutes.
Large amounts of intravenous fluids are also given to dilute the concentration of Cytoxan in the bladder.
Pre-medication for nausea is sometimes given, but treatment with Cytoxan is generally well tolerated.
IV Cytoxan seems to be associated with fewer malignancies and many fewer bladder problems, while being equally effective.

Controlled studies also show that it improves kidney and autoimmune lung disease. Cytoxan is well tolerated by most patients. Like Imuran, it may cause an upset stomach, and its use may decrease the white blood cell count, platelet count, or red blood cell count.

All of the immunosuppressant agents are steroid-sparing. While cytotoxic medications should not be used in cases of mild lupus, these medications can be very helpful and even life-saving when major organs are involved, or in cases where the lupus is quite active and symptomatic.

I hope that I have been able to answer some of your questions
Peace and Blessings
Saysusie

Naboul · Posted: Wed Nov 09, 2005 11:06 am Post subject: Cytoxin

Hi Solesinger.

i was diagnosed with SLE 2 years ago, i have been taking Plaquenil during that time, 5 months ago i had a bad flare that involved my kidney, lung heart and brain. i satyed 2 months at the hospital. There they started cytoxin infusion. Of course i am loosing my hair, i have nausea sometimes and i am tired 10 days after the tretment. but i believe that once you are over the fact that it's chemo, cytoxin will make you feel better.

I hope you well.

Nabila

SoleSinger · Posted: Wed Nov 09, 2005 1:56 pm Post subject:

Thank you all so much!

They have decided NOT to put me on Cytoxan as of yet... YAYAYAYAY!!! They just going to increase my CellCept and lower my Prednisone (WOOOOOOOO HOOOOOOO) and monitor that for a while... And go from there I guess!

Thank you all again for the information and your support!!
_________________
"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono