Chemotherapy with Cytoxin

hi K,
I am not on cytoxin but am on methotrexate which is also a chemo. I have been on it for about 2-3 months and frankly I am thinking it is more than I want to deal with right now. I have been feeling pretty horrible lately. Two weeks ago I developed flu like symptoms with fever so they took me off for a week and put me on antibiotics and then had me start the chemo again last monday and I still feel like I have something in my chest. I am coughing and my throat hurts and I coulld sleep pretty much all day and night. So I am thinking of calling tomorrow to discuss wheather to discontinue or not. I take a once a week treatment. What is the regimen for cytoxin? I am here anytime you want to compare notes. Be well.
Linda

Kedaso,
I am probably the only person I know on this forum who had to resort to the pulsed (IV) cytoxan protcol that you are currently on. Emily used it for 6 months, when nothing else worked, but then had to go back to weekly IVIG afterwards. Back in April of 2002 I was at my worst; unable to walk at all, couldn’t lift my arms, & had no use of my hands. In Duluth, MN I was first dx with GBS & I began with 5 PP treatments, which seemed to do nothing to halt my illness. I was then sent to Mayo for 3 months as an inpatient where I was rediagnosed with CIDP. There I had 5 days of IVIG, then IVIG twice a week, then solumedrol infusions were added to my treatments. Nothing was helping me to get anything back.

I was basically told by the neurologists at Mayo that I had the progressive form of CIDP & that I would eventually die from it. I went home in this condition & my husband took 3 months off of work (FMLA) to take care of me. By that October I began seeing Dr. Gareth Parry at the University of Minnesota. He tried an extreme protocol for 12 weeks every Friday of Plasmaspheresis in the morning, then IVIG infusions, then solumedrol. By the end of the 12 weeks I felt more dead than alive. He then said it was time to try chemotherapy treatments using cytoxan. So for the next 9 months (Jan- Sept 2003) I was on monthly cytoxan infusions (1800 mg) per month in an effort to wipe out my immune system by bringing my white cell count down to zero. By September my white cell count was so low we discontinued the treatments.

I tolerated the cytoxan infusions extremely well, used the Zofran for nausea, but did lose my hair. The treatment worked as far as arresting my CIDP & I have not been on any treatments at all since then. By the summer of 2004 I began walking again (with AFOs & a cane) & also got most of the use of my hands back by then also. I have been on no treatments at all for my CIDP since Sept of 2003. I am very satisfied with the cytoxan protocol & feel it saved my life. I drive again, go to water aerobics twice a week all by myself, can walk around the grocery store, the mall, etc. If you have any more questions, please feel free to email me. Best of luck…
Pam

check rituxan as well its a next generation B cell reduction treatment.
its being used as well for autoimmune diseases.

With Rituxan, there is no hair loss. It is pretty gentle as far as most chemos go. Please make your doctor aware of this drug. All the usual treatments failed me as well, and Rituxan got me walking and able to feed myself again.

A very useful research article [B]Diagnosis and Treatment of Chronic
Immune-mediated Neuropathies[/B] can be found here:

[url]http://www.neuropathy.org/site/DocServer/autoimmune-Latov_.pdf?docID=1061[/url]

It is a review of a large number of scientific articles dealing with CIDP and variants including results of various treatments and a report on a clinical trial of IVIG. What interested me especially was what it had to say about my variant, antiMAG IgM neuropathy. According to it use of Prednisone exacerbates neuropathy which has been exactly my disastrous experience a year ago. Rituxan seems to be the most effective for me – if I can get it.

Hi,

After 10 months of failed traetments and a steady decline of my health I ended up as a complete quad on a ventilator and feeding tube for over 2 months, the muscles behind my eyes also were affected and I could not focus on anything. That is when I first was put on Cytoxan. I did an infusion every month for 5 months. I noticed improvement after my first treatment, it was a very small improvement, but at least it was improvement. (I was able to move my pinky finger).

As far as side effesct go, the only one I had really was the nausea, which I aslo recieved Zofran for, and I lost about 80% of my hair which was devistating for me at the time because I was 21 and had always loved and was very attatched to my long golden colored hair. However, the benefits greatly outweighed the costs for me. It put my aggressive and unmanageable CIDP into remission when nothing else worked. If I never would have taken the Cytoxan I would not be here to tell you about it today. After 5 months of treatment I was finally turned around to my very long road of recovery.

I am in really great shape for what I have been through. I had to relearn how to do everything from feeding myself to walking again. I can now withstand long distance walks unassisted and live a pretty “normal” lifestyle all things considered.

I am a strong advocate for Cytoxan and wish that they would of put me on it sooner then they did, it would of saved me a lot of suffering. However, I am a little thrown off by the ideal that they are continuing plasma pheresis with it. Plasma pheresis made me worse every time I had it done, but different things work for different people so there may be a reason your nuero is deciding to keep doing it.

I really hope the Cytoxan gives you as good of effect as it did for me, it gave me hope when I had almost given up. Good Luck and I will put you in my prayers,

Emily

i am currently pushing my neurologist for cytoxan treatment. i would be very interested in hearing all your experiences– especially your remission..

pam, emily, are you asymptomatic at this point?

do you think it will be hard for me to get this treatment?

alice

Hello Alice:

I am, like you, very interested in high dose cytoxan. However, rather than pursuing the route of receiving one infusion per month over a five or six month period, I am interested in the “Revimmune”, or “HiCY” protocol, now in clinical trial at Johns Hopkins. This protocol is basically the same dose of cytoxan that one would receive as conditioning for a bone marrow transplant. Over a four day period, you receive enough cyotxan to completely ablate, or wipe out, your peripheral immune system. Then, when your white blood cell counts bottom out to undetectable levels, you are given injections of Neupogen which cause your bone marrow to go into overdrive producing new white blood cells. They call it “re-booting” the immune system. The protocol has had spectacular results in a number of autoimmune diseases, like aplastic anemia, Lupus, multiple sclerosis, sarcoidosis [U][B]and CIDP[/B][/U]. The protocol has produced long-term remissions. You can Google Revimmune to research more. This treatment seeks to eradicate the autoimmunity, rather than “manage” or suppress it. For people with severe disease particularly those who are younger, and who are finding modest results with immunosuppresion or IVIG, it makes complete sense to me. Obviously, it has risks and it is not a “natural” treatment. You lose your hair, etc. But I, like you, am young. I’m 46, and am very disabled. I once was extremely fit, and was an expert snow skier.

The issue right now is that Hopkins has narrowed their focus to completing the next phase of a clinical trial for Revimmune to treat multiple sclerosis. Thus, I believe it will be difficult to obtain this treatment “off-trial” for a disease like CIDP for at least another year.

Kedaso,

thanks for the update and interesting to see others talking about this with their neuro’s. i too was once quite fit and active and although i can walk around the house and for short distances, i feel like i am slowly losing function. i saw a rheumatologist for lupus questions and he has suggested starting the cytoxan protocol and has had success with CIDP patients, but my neuro would rather wait until i get worse to do it. i have been quite torn and saw the hopkins study as well. the study is a small group but they had impressive results. i go back to the rheum next week and my neuro after that but may seek a third opinion. it is VERY tempting to think of not getting ivig weekly, as well as cellcept and at least halting what has already been done. i know pam was quite helpful in replying to my message as well. good luck to you kedaso and i’ll be curious to see who else posts here. gabrielle

I missed your post the first time as it didn’t apply to me then. 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 undercontrol 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.

Oh and Jan thank you too because you also shared your story with me and have kept in touch!!! i’m sorry. i even printed out your letter for my next neuro visit:)

I get plasmapheresis every thursday & ivig every friday. On this regime, I seem to do very well. However, if I even try to skip one week, I get paralyzed from the throat down & have vision problems & all the other fun stuff that goes along with it. The only problem is that it is costing $70,000 to $80,000 a month and my primary insurance is about to cap out. My doctor knows this treatment keeps me stable, but she isn’t sure that Medicare will approve this treatment as it is atypical or so she says. She has been talking to me about taking Cytoxin for months now & I am somewhat fearful of taking it. My spouse has a friend whose husband took cytoxin & he ended up having severe problems & permanent damage. His life has never been the same and they have told us I should steer clear of it at all costs. Has anyone here had any permanent problems as a result of taking cytoxin?

I was diagnosed with CIPD based on EMG testing, spinal tap (positive) and muscle and nerve biopsies ( inconclusive) I need to arrest the disease or I am going to be bed ridden. I went through IVIG, Prednissone and Plasmaforesis without any benefit. I have completed five sessions of Cytoxin with minimum side effects but no benefit so far. I’m actually weaker which the doctor says should not be the case. Tireder but not weaker. He says not to expect improvement until the treatments are complete and possibly a couple of months later. My next and last session is April 27. 2010.

Am very interested in hearing from anyone about delayed improvement from cytoxin. How long it took and what were the first signs.

Thanks in advance,

Ubbietom

Ubbietom

how many mg are you getting? how often do you get it? My 21 year old son has been getting cytoxan since Feb 2010 he gets 2000mg and he gets it every 3 weeks. he has had dramatic improvements (he was paralyzed andin a wheelchair needing me to do almost everything for him like showers and dressing it was getting to the point that I thought I would have to start feeding him) and we saw improvements within a few days of his first treatment. with evry treatment he sees improvement. he has had 4 treatments now and he is walking with a cane and doing everything for himself. he will continue the treatment until July (6months of treatments).

Just wondering if your getting enough of it (maybe your doctor may need to increase dose and do every 3 weeks and leave you on it for at at least 3 more months) to see some improvement.

I am so delighted to learn of your son’s miraculous recovery. In my case there is only a 50/50 probability that the CIDP diaagnosis is correct so I worry about my lack of improvement.

After my first treatment my low blood count made them decide to lower the dosage 25%. My wife has always had a concern that I may not be getting enough. I don’t remember what the current dosage is. I will ask Tuesday April 20th at my next and last scheduled infusion and let you know.

You’re the first person I’ve communicated with through the forum. It’s nice to know there is someone out there who cares.

Ubbietom

Yes find out how much your getting that could be why your not seeing much improvement if your not getting enough. also if you dont have the right diagnosis you may not be getting the right treatment that could get you better.
Have the doctors said what else it could be if you dont have CIDP? The key to getting a correct diagnosis is having the right neuro who is familar with these rare illnesses. do you see a university hospital neuro? They see more of these rare diseases and it might be good for you to see one.

we had seen 2 reg neuro’s before going to the university hospital neuro and thank God we went to see him. He knew so much more about the illness than our reg neuro. I beleive it we had not gone to Dr Lewis that my son would be completely paralyzed or worst. our reg neuro only has less than 10 other CIDP patients in his practice and he treats them like their CIDP is the same. He kept telling us that it takes IVIG at least a year of doing it before yuou will see any improvements and that is a huge lie. if you dont see improvemet within 2-3 months of doing any treatment then you should check the dosage and make adjustments or move to the next treatment.

The reg neuros dont see enough of the rare illnesses intheir practices and they are as knowledgable about them because they dont see many of them.

I am glad you are here at this forum and look forward to seeing more post from you in the future to see how your doing.

where are you from? There are several others who have gotten or are getting cytoxan on this forum but havent seen them post in a while. I am sure once they come on and see your post they will start responding. hang in there, there are a lot of caring people on this site.

I finished my scheduled six cytoxin treatments today (4/20/2010) and met with my neurologist. My initial dosage was 2000mg. Based on blood work that was decreased to 1450mg for the remaining five sessions.

The basic conclusion, mine and the doctors, is that I have not improved over the course of the treatment. That is not encouraging.

The plan is to wait three months, to see if I improve and the cytoxin is out of my system. If I still have not improved we will try a different treatment. Most likely cyclosporine.

I live in Foxboro MA. I worked with a local neurologist backed up by a level three neurologist at Rhode Island hospital. When the IVIG, steroids and PM failed to work I sought a third opinion at St Elizabeth’s in Boston where the cytoxin treatments have been done. I do believe I’m in good hands.

As far as the diagnosis is concerned there is a lot of data to make the doctors believe I have CIDP.

As of now, my quality of life is pretty good. No pain, good appetite, feel good in general. I have difficulty getting out of a chair, pulling myself up stairs. I walk with a cane. My balance is poor. I have to be very careful not to fall.

Thanks for your interest. I’ll keep you posted.

Ubbietom

Do you have AFO’s (leg braces) they will help with foot drop and leg support. Ryan has to wear them so he doesn’t strip over his feet. I hope you find a treatment that works. I know the feeling. Ryan did IVIG, plasma Pheresis and prednisone and none of them worked. cytoxan has been his miracle.

I will be praying for you that you find a treatment that makes a difference. Hang in there its a long journey and requires patience, something I wasn’t blessed with (patience). lol

Rhonda

Thanks for the good wishes. I do not wear leg braces and am okay with a cane if I watch my step and don’t push myself. A year ago I investigated a new electronic devise which is attached to the ankle and has sensors implanted in the shoe which works for foot drop by lifting the toes and front of the foot up. I had the demonstration at Braintree rehab in MA. At the time I didn’t need it but was impressed that it worked. FYI just in case you missed it.

LOL

Ubbietom

Hi,

I am in the process of getting braces for foot drop which I now realize should be a big safety improvement.

Cytoxin didn’t work. Will begin cyclosporine this week.

God bless,

Ubbietom

Kedaso,
Just wanted to let you know that my thoughts and prayers are with you,
please keep us informed how you are doing. Bless you.
Judy

I was fitted for leg braces last week and wonder why nobody recommended them before now. They are a terrific safety device both for foot drop and support when my leg collapses.

Thanks,

Ubbietom