Cytoxan; is it worth it?
AnonymousAugust 6, 2009 at 9:47 pm
Hi, after 15 years of PE, things are getting worse, again. Worse is a relative term as we know. Getting around is much more difficult, tired after a basic effort. Last exam had no feeling with the tuning fork test in hands and feet. Walking is exhaustive after a few hundred yards. Doc want’s to use cytoxan monthly with steriods to see if the little antibodies go to sleep. Probably a 6 – 9 month run like this, keeping the PE weekly. Any input is desired, good or bad
I’ve been a believer of PE as it has worked for me, quite successfully. I am very experienced with PE exchanges, well let’s just say hundreds of reasons.
Thanks for reading. 🙂
AnonymousAugust 7, 2009 at 11:29 am
I dug this up from an earlier thread that had been posted….getting lazy in my old days! This was my response about cytoxin: “I was diagnosed with breast cancer in Aug. 2007 and received chemo that included cytoxin. At the time of the diagnosis I was barely standing and used a wheelchair outside our home. I received my chemo every 4 weeks and by Christmas I was walking with just a cane and in January I got rid of that. I still receive IVIG monthly but we are slowly tapering it and the steroids I was on for the CIDP. My oncologist believes in home infusion so I received my chemo at home and it was wonderful. When I didn’t feel good I was in my own bed. I too lost my hair but my nausea was kept well under control so I felt like it was a doable thing. If I had the choice of doing it over I would still recommend it. I haven’t relasped since I took the chemo and I had surgery, radiation and now more chemo with other drugs for another year. My labs have never looked more normal than they do now. I am glad to see that others will be trying the cytoxin route as well. It is a potent drug and I did need some nuepogen and procrit to kick start me again but the results speak for themselves.”
As an update for now, I had a small relapse last fall/winter (2008) but received my last IVIG then and am not receiving any drugs for my CIDP other than 5 mg every other day of prednisone. I still get exhausted more easily than the “normal” person but I am trying to do more each day. I don’t take any naps anymore but am definitely ready for bed at night. I still attribute my remission to the cytoxin I received. It seemed to “reset” my immune system a bit. My neuro says it could still come back tomorrow or maybe never but until then I am hopeful and feel blessed with the results.
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AnonymousAugust 8, 2009 at 12:55 pm
There are 5% of the people with CIDP, that the normal protocol of treatments do not work. I am in that 5%.
I went through the PE, (Plasma Exchange, or Plasmaphereses), for over a year, with no help whatsoever, and the CIDP continued to progress, (I had already tried IVIG, steroids, and an immunosuppressant). Actually, it was progressing with some speed. The CIDP had hit my autonomic system, and was hitting the different organs/systems, making them not work properly anymore. I am able to walk a few steps within the house, using the walls and furniture for support. But I sit/lay 99% of the day. I also have an electric wheelchair to go out in. I am now on oxygen 24/7, and was told by two of my doctors, that a trach & respirator is not too far off in my future. And have a foley catheter. I am now choking more, and was told by one of my doctors, that a feeding tube in not too far off in my future. I take a handful of pills 3 times a day, as the CIDP has hit the different autonomic organs/systems. And I was told be two of my doctors, 3 summers ago, that I had about 2 years left to live.
This past June marked the two year mark of being on Cytoxan. The Cytoxan, I feel, slowed down the progression of the CIDP, but did not stop it. This past April, my neuro told me he feels the Cytoxan added about another 2 years of life. So, yes, the Cytoxan has been a benefit.
My neuro has a different doctor, a Rheumatologist, in charge of my chemo, (the Cytoxan). I like both doctors–they are both very good. But my Rheum. told me he is nervous that I have been on it for so long. But my neuro told me there is nothing else to try. My neuro is watching the stem cell transplant for CIDP patients program, but so far, he is not pleased with the results so far. This past October to March, my Rheum. had me stop it, to give my bone marrow a break. And I started back up in April. He told me that most people get Cytoxan for 6months to a year, and then stop it. But, being that I am his, (the Rheum.), first CIDP patient, he is letting me continue on the Cytoxan, but has gone over with me the side effects of long use. He also required me in April, when I went back on it, to have my Advance Directive completed and turned into the Medical Center, (in some states they call it a living will). He knows what is in my future, and he is the third doctor on my team of 7 doctors, to go over with me the process of dieing, and what the probable things that will happen to me as I go along.
Randy-the thing you didn’t mention, was if your CIDP hit your autonomic system. If you are unsure about that, then you should ask your neuro to perform a skin biopsy on you. It is a very simple procedure done in your doctor’s office. They numb a small area on your thigh, then use what looks like a syringe with a thicker needle, in and out quickly, and that’s it.
If the result shows small fibre atrophy, then most likely you will have autonomic neuropathy, and the CIDP hits the nerves controlling the different organs/systems of the autonomic system. Post back here, if you want me to tell you what and where it hits, and what happens.
But, as you know, treatments work differently with different people. Perhaps being on Cytoxan for you, might put you into remission. Perhaps it definitely worth a try, since you said the PE wasn’t working.
They admit you into the hospital, on the Oncology Floor, for one day, (and they stick with the same day every month, unless it falls on a weekend–with me, it is the 20th day of every month). The treatment starts about 10am, and ends around 630pm-7pm. All treatment is via IV, they first load in fluids, (D5 ½ NS) for about 2 hours. Next comes Decadron 6mg, (a steroid). Cytoxan is very harsh on the kidneys and bladder, so then they give you Mesna 1000mg, (a drug to used to reduce the harmful effects to the kidney and bladder). Then comes Zofran 32mg, (a drug used to reduce nausea, especially during chemotherapy).
Then comes the Cytoxan. I receive the maximum dose of 2000mg.
However, that gets adjusted by what your blood test shows, mainly be what your white blood count shows. EXACTLY 10 days after you get the Cytoxan, you must get a blood test for a CBC, CMP, and my doctor also includes a Sed Rate and CRP. If your white blood count is still above 3.8, I can receive the maximum dose of 2000mg. If it dips below 3.8, (of which that just happened again last week—my is 3. THIS is what they watch out for—if your white blood count goes too low. This happened a few months ago, and when it went below 3.8, I got shingles. So, I already talked with the Rheum., and he told me he was going to lower the Cytoxan dose to 1800mg this month.
Then they give you another dose of Mesna 1000mg. Then end the treatment with about 2 more hours of fluids, (D5 ½ NS). The whole treatment takes all day.
It is important to have more fluids than usual over the next 3 days after getting the Cytoxan. Since it is a toxic chemical, over the 3 days after you get the Cytoxan, first wipe the rim of the toilet bowl after you pee, and flush the toilet twice. (I don’t have to worry about that, since I have a foley catheter.) But, before I had my catheter, the nurses told me that because it is a toxic chemical, you don’t want anyone touching you pee, since it will contain the remnants of the Cytoxan, (like you don’t want your family member, whoever cleans the toilet, to get the chemical on their hands. If anyone or you, gets it on their hands, immediately wash your hands with soap and water.
I have good months and bad months, dealing with the side effects…you just never know.
But the heat of summer doesn’t help, as I usually have bad months during the summer.
I have multiple scripts/drugs on hand, for the nausea. (I am allergic to the group of drugs called Phenothiazines, which include Compazine and Phenergan.)
So, I have Tigan 300mg both in pill form, and when I am VERY nauseous and can’t swallow, I have it in suppository form as well. I also have Zofran 8mg. And I also have Marinol 2.5mg, (the pill form of Marijuana, THC), which helps greatly, since you feel like **** when you are very nauseous, and the Marinol takes the nausea away, and MAKES YOU FEEL GOOD…LOL…
So, Randy, I hope this helps. Sorry for it being long, but I wanted to prepare you for what the treatment was like. Back when I was on Plasmaphereses, I had a venal cath.
For the Cytoxan treatment, they put in a port, as I am a poor stick. Since you will get the Cytoxan for a while, it is good to have a port put in, of which you should mention to your doc., of which he will probably agree.
I wish you much luck with this. As you can see by Jan’s post, it worked well for her.
Hopefully, the Cytoxan will put you into remission. If it doesn’t, then hopefully it will at least slow the progression, like it did for me.
All the best,
AnonymousAugust 10, 2009 at 12:11 am
I came down with a very severe case of CIDP in March & April of 2002. It began slowly with numbness in my hands & feet the about the middle of March. I was then dx with GBS & Given 7 PE treatments in 10 days & sent home to recover. By April 27th I could no longer walk, raise my arms or legs up & had lost the use of my hands. For the next 8 months I was given bi-weekly IVIG & steroids, which did very little for me.
I was then given the cytoxan protocol from Jan 2003-Sept 2003. It began with 5 infusions of 1140 mg of cytoxan in a hospital setting, & then monthly for 8 more months of 1800 mg each. Each time I was also infused (via a port) with solumedrol & Zofran. It did completely arrest my CIDP & slowly I began to recover. After over two years in a wheelchair, I started walking again. First with a walker for a few months, then two canes, then one cane. I did need AFOs for foot drop, which unfortunately ended up being permanent. I gained back about 80% of the use of my hands. I got my driver’s license back.
Since the fall of 2004 I have lived a fairly normal life for someone my age (I am now 56), minus the sports I used to play. We travel quite a lot, still snowmobile, I attend water aerobics twice a week, eat out with friends & family, have holiday dinners, babysit our grandson, etc. Without the cytoxan, I believe the CIDP would have progressed to the point where my lungs & diaphragm would have been affected, probably resulting in death. Most importantly of all, I have had no treatments since Sept of 2003. But I would only recommend this for someone with a severe case of CIDP, as down the road I could pay from having had chemotherapy. It is a tough decision for anyone to make, but for me it was a “no-brainer.”
AnonymousAugust 10, 2009 at 3:46 am
In 2003 I was dx with GBS and later CIDP. For a year, my disease spiraled out of control as I tried every treatment available to me. I recieved numerous IVIG tx, plasma exchange, and oral and IV steroids. No matter what they tried, nothing would work. My CIDP progressed to the point of making me a full quadrapalegic, not even able to move a finger. I was even beginning to go blind because the muscles behind my eyes were starting to become paralyzed. I was put on a respirator and a feeding tube that I depended on for months. I thought that I was going to die until they started me on Cytoxan. After the first treatment I was able to wiggle a finger and after 6 months of treatment I was strong enough to start relearning how to walk. It has been 5 years since I finished my Cytoxan regimen and today I can walk, run, and carry on with a normal lifestyle of a 26 year old. I lost all of my hair, but it was a small price to pay, besides it all grew back. For me when nothing else worked, the Cytoxan did. I know that the chemo is what saved my life.
I also take a daily dose of oral immunosupressants for maintnance (Imuran).
AnonymousSeptember 24, 2009 at 10:02 pm
Well one week ago I recieved my first Cytoxin treatment. All in all it went real well. No real strong side effects noted. I went to the Packer game, (that stunk) on Sunday. So far I have had a fairly consistent week with strong energy levels. Sleeping has been good (6-7+hrs/night).
Thanks for all the input everyone has given. I still get bummy when thinking about the future. So we pray and work hard to keep busy.
AnonymousSeptember 25, 2009 at 1:25 am
As I stated before, I was given cytoxan for 9 months, once a month after the first 5 loading doses. But it was 3-4 months before I felt that it had arrested my CIDP. Be patient & I hope it will stope the progression of your CIDP permanently. Sorry the Packers game sucked last Sunday, I am a Vikings fan (note that we are neighbor states), & I look forward to Oct 5th Monday night football. Must be nice to be able to get tickets to a footbal game!
AnonymousSeptember 27, 2009 at 9:09 am
This is such a great information that you are all posting on this subject. Ryan has been looking into this treatment and has been talking to his neuro’s about it. He is currently on high doses of prednisone and doing Plasma Pheresis. He has been doing well on this treatment and is seeing some progress but its slow and he has become very puffy and has gained weight on the prednisone.
However even though he has had some progress he doesn’t want to do this treatment for years to come. He wants remission. That is why the push for the cytoxin on his part. He knows its not going to be easy but he wants remission so badly. We see Dr Lewis again Nov 2 and this will again be a topic Ryan discusses with him.
We did read that cytoxin can make you become sterile, has anyone experienced this side effect from cytoxin?
AnonymousSeptember 27, 2009 at 9:38 am
yes, sterility is a known possible side effect of cytoxan. from what i gather, the age of the patient and the amount administered are significant factors. he could save sperm now if it is a real concern…
my one blast of 3,400 mg of cytoxan has made me feel better than i have ever felt since having cidp… i will be posting on this subject after i get the drive replaced in my beloved mac, that decided to crash yesterday.:mad:
AnonymousOctober 19, 2009 at 11:43 pm
My second cytoxin treatment went as well as could be expected. The dosage remained the same due to lower white cell counts the 3rd week (typically its week 2 I’m told). I attribute the drop to the severe cold I experieinced 14 days after the first round was introduced. Funny thing this time, I have very little taste and now hate the smell of cleaning products. Walking into our laundry rooms makes me gag. I know some of you are thinking, bologny, but its true>>> smell bleach = run!
Food last weekend no matter what it was tasted bland. Late on Sunday (after the whopping of my Detroit Lions) I had apples and they had flavor. Later I was told they apple slices were sprayed with lemon juice to keep em from turning brown, well I don’t know what I tasted, but it was something. Today everything is bland again.
I have had no hair loss, not that it matters much to me. Being bald for a few weeks with the hope of putting this nasty disorder into remission is a small price to pay.
I did not have the steriods this time. Just the Zofran and ???? before and after the cytoxin. Dr felt the sugar swings in my blood were quite sever so we both agreed not to use the steroids this time. I appreciate everone’s insights into their dose rates. I don’t think I’ve reached my max dosage yet for the cytoxin.
This post was much easier to write then many of my others. The fear that goes with new treatments, and dealing with the side effects are understood. I am beign very careful of avoiding large crowds due the lower immune system. After all, I can fight with the best of em, not just all of them, virises!
Take care all, specially you who have supported me these last few months! You know who you are!!
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