Question on Chemo

    • Anonymous
      December 16, 2010 at 8:29 pm

      i was dx with cidp back in june of this year. im currently recieving 100g ivig every two weeks. ive also started chemo , been thru 3cycles and soon comming up on my 4th dose of chemo. My question is to anyone here thats gone thru chemo for cidp , how far into the treatments did you get before you noticed they were working to help the effects of your cidp ?

      Any information would be great


    • Anonymous
      December 16, 2010 at 11:42 pm

      The chemo I received back in 2003 was the high dose cytoxan regime, is that what you are getting? I received 1800 mg per month after 5 loading doses in 10 days. I had 9 months of chemo before we decided it had been enough to arrest the CIDP. I began the infusions in Jan & could tell by May that the CIDP had stopped, arms & legs both felt stronger. It can take up to 2 years to see all of the results after that though, as nerves can take that long to heal.

    • Anonymous
      December 17, 2010 at 6:52 pm

      I’ve been on ‘post cancer chemo’/post surgery hormone suppressants for BC for a few years now, but not the real ‘CHEMO’ you are getting!
      IF nothing else? The IVIG should likely help you stall some cancer developments [there have been very few studies in this area-tho] and could at least help you keep UP your immune system a bit as chemo treatments can wreak havoc in your system, Even tho most chemo therapies are very specifically targeted? Some side effects can and do occur. Good and bad.
      For me? My having had IVIG the year before I was diagnosed made a big difference in terms of the tumor being: ‘well contained’ and almost ‘tame but large’. I also believe, tho it’s not proven? That the IVIG helped fight possible infections after surgeries. I came back from each surgery [both very invasive] better each time, than the docs expected. To that? I give all the gold stars to the IVIG!
      As far as CIDP being ‘cured’ because the cancer is ‘cured’? Can’t say, one set of med issues sets off one of those Rube Goldberg like sets of domino falls. Going every which way, and all down?
      PLEASE know or expect that after chemo itself? You will be taking what they call ‘post cancer treatment medications’…essentially ‘chemo’ pills of the nature that tends to suppress what your particular cancer feeds on.
      CIDP nerves can only heal IF you eat right [like cancer], supplement right [like cancer] and exercise-or try to [like cancer] with-out let up!
      You WILL have good and bad days! As before! You will MAKE progress IF you make it your mission! And you MUST work hard at it! It can and does succeed, I’ve had set backs? But Your attitude to doing the better parts that you CAN do? Make all the difference! You are fighting two battles [As I have-Stress? NOT!] and I know it gets ‘old’ really fast! Just remember? You ARE able to get up out of bed on your own and do ‘morning things’ then get dressed and try and lead a good life! That you can get outta bed? VICTORY every day! Hope and good things!

    • Anonymous
      December 17, 2010 at 9:52 pm

      im on 1000mg of cytoxan a month. its only been 3 months , going for my forth treatment dec 26. im not feeling any positive effects from the chemo so far. My docs say 3 to 4 months before i should feel somthing.

      Ive only been dx with cidp and not cancer. so i dont know what all or if any meds they will put me on after the chemo.


    • December 18, 2010 at 6:20 pm

      Roland–I have not been on any type of chemo medication or infusions personally—so, this is only out of what Ive read in articles or others posts–I’m not even sure if its for every type of chemo treatments or just certain ones—but I do remember reading 6 months—6 months to determine if the chemo was doing anything. i think someone on this board had posted this time frame for themselves too. Sorry i didnt bookmark any of it—it was during one of my many late night readings while on the prednisone. Lori

    • Anonymous
      December 18, 2010 at 6:44 pm

      Emily’s mom gave us a link to an article by Dr. Lewis. He is considered by many to be an expert.

      that thread is here-

      follow that link to the article and then click on ‘Treatments and Medications.”

      There you will find a comprehensive discussion on all treatment types including this on “[I]Cyclophosphamide (Cytoxan)

      1-2 mg/kg/d PO or monthly pulse IV; dosing based on body size used; usually a 6-mo treatment period used; dose adjusted to reduce WBC count to 2000-3000/µL; reports describe high-dose ablative therapy (which reduces WBC counts to 0) having efficacy in patients with otherwise severe and refractory disease[/I]

      Please note the adjusted dose and, therefore the timeline, is for a goal of reduced WBC (white blood cell count) of 2000-3000. Hence, the reason to regularly monitor your CBC (complete blood count).

      As an aside, further note that the ablative therapy reduces your WBC count to zero. This may approximate what the Chemo for stem cell transplant does, without the ‘new’ stem cells.

    • Anonymous
      December 19, 2010 at 1:04 am

      My appointment with Dr. Lewis is on Monday. Last appointment he said that as long as Cellcept was helping he wanted me to stay on that. We talked a little about the Cytoxin during the last appointment. Not sure what this appointment will bring.

    • Anonymous
      December 19, 2010 at 11:02 am

      [FONT=”Microsoft Sans Serif”]ryan, rhonda?? they, along with pam h have direct experience with chemo– with positive results…[/FONT]

    • Anonymous
      December 20, 2010 at 8:26 pm

      Hi, I responded very favorably to cytoxin. I went for “chemo” after 18 years and over 700 plasma exchanges, miserable dealings with IVIG and celecept. I am ~200 lbs and recieved ~1600 mg monthly. I responded within 3 – 4 months, but had 10 months of cytoxin. Sound like your dosage is lower. that is something your Dr and you can chat about. I finished up in June 2010. Still going strong.

    • Anonymous
      December 24, 2010 at 2:19 pm

      Glad to hear positve results from Chemo. Do you have any residules like the numbness or the pins and needles feelings ? and are you regaining strenght ?


    • Anonymous
      December 27, 2010 at 9:08 am

      Roland, I had the tingley feelings associated with CIDP for years. I don’t notice them anymore! As for strength, lets just say it’s like night and day differences. Last summer I had enough strength and coordination to sail on Lake Michigan, went for 5 mile walks, swam for extended periods and never felt better! PM if you’d liek to talk.

    • Anonymous
      December 30, 2010 at 9:15 pm

      I am Ryan, I am 22 and i also see DR. Lewis, and have gone through Chemo. I just got on after not being on here for a few months. I started Chemo On Feb 2nd of this year and before i had started i couldnt even role over without help from my parents. After 2 weeks of doing it i started to walk with a walker. Before chemo, i went through 3 types of treatment. I started with IVIG, and then to Plasma Pheresis and then steroids. None of these had helped me at all, i started researching chemo about a year prior, and knew i wanted to do it, but there are some major consequences that can come along with doing chemo as well. I did chemo for 6 months, every 3 weeks, and 2000mg of Cytoxin (Chemo) I am now walking with no assisted devices except 1 AFO on my right leg, due to all of the paralysis for so long. But i am doing great and feel almost normal again. I also returned to college this past semester as well, and it went great.
      I hope this helps you out with your decision. If you have any questions you can email me or even call me just email me and i will give you my email. My email is [email][/email].
      Good Luck

    • Anonymous
      January 3, 2011 at 8:17 pm

      Randy B

      when did you know that the chemo started working for you ? ive been
      4 months now and im not feeling and noticable changes.


    • Anonymous
      January 4, 2011 at 8:23 am

      Hi all,
      My experience with chemo is that for the past two years I have been on experimental low dose methotrexate. I take it twice a week. I have responded positively to it in terms of regaining strength however the dosing has been variable due to side effects. I struggle with fatigue, some hair loss, and overall lethargy for a couple of days and then get a bit of energy and strength by the third day. It gives me four or five days of pretty good function. I tried cellcept and IVIG with negative results which is what led me to the chemo. Currently we went from taking one large dose a week to two smaller doses a week to try and manage symptoms from the drug. In a month we will discuss upping the dose due to some decrease in strength lately. It’s a juggling act between symptoms of the drugs and symptoms of the CIDP.
      I do worry about long term usage and it’s overall effect on the body but I get blood work done monthly to check liver enzyme levels and so far so good. I hope this helps.

    • Anonymous
      January 4, 2011 at 4:58 pm

      For me it was a slow process, not like Ryan’s experience. If one has axonal damage to any nerves, this chemo treatment will not rejuvenage those nerves. But if it works, it will stop the bad antibodies from attacking constantly. This arresting of the CIDP then allows the nerves with only myelin sheath damage to heal. I wasn’t able to get rid of my AFOs, & don’t have “normal” strength in my hips or knees, but I did go from a power chair to walking mostly & getting back the majority of the function & strength in my hands. But it took me about 8 months to see the majority of my improvements return. If you keep losing function, then it isn’t working for you.

    • Anonymous
      January 5, 2011 at 12:12 pm

      I completed my sixth Cytoxin treatment back in September 2010. In October, I started noticing improvement in my wrists. I continue to improve in my overall balance and wrist movement. My fingers have slightly improved. I am still waiting for further improvement in my ankles and feet.

      My Doctor originally told me that with the six month Cytoxan treatment, the majority of participants in the research study improved at about 3 months after the sixth treatment. Some improved within one month and others took longer than three months. Don’t be discouraged if you don’t improve during the treatments. Expect to improve after the completion of the treatments.

    • Anonymous
      January 10, 2011 at 8:27 pm

      im a couple weeks past my 4th chemo treatment and i think im noticing a bit better strength in my legs. im finding stairs a little easier. i go see my neuro tomorrow and i think yet another nerve conduction test. im hoping the nerve conduction test shows us better numbers than in the past tests.


    • Anonymous
      January 21, 2011 at 1:19 pm


      After IVIG, PF, and steroids which did no good I had six months of chemo with cytoxin. Side effects were bad and testing after nine months from start showed no improvement.

      I am currently on cyclosporine and after three months testing shows there has been moderate improvement.

      Best of luck,


    • Anonymous
      January 21, 2011 at 11:57 pm

      What is your present physical conition? Can you walk normally, do you have the use of your hands, can you run? I think a lot of the eventual recovery depends on where one begins. I had been in a power chair unable to walk, no use of hands for 10 months before I began the chemo treatments. I did not expect to make a full recovery, as I knew I had already suffered axonal damage,particularly in my hands & feet. But if you were in good shape from your IVIG treatments, you will be pleasantly surprised when the cytoxan halts your CIDP.

    • Anonymous
      January 31, 2011 at 8:19 pm

      Hi Roland

      I’m Ryan’s mom and I saw he posted to you and then didnt get back to you. lol he has been busy with homework. anyways Ryan noticed improvement right away with cytoxin. Like he said he couldnt even role over by himself. prior to starting chemo he had periods of time when he would start to feel stronger on plasma pheresis and predisone. then after a few weeks he would go down hill again.

      just a few days after his 1st treatment Ryan was laying in his bed and he yelled for me and I walked in his room and he was on his hands and knees. I about cried. he started gaining strength and by his 2nd treatment (3 weeks after the first one) he could walk with his walker. there was no stopping him.

      Now Ryan did IV chemo infusions some people do a cytoxin pill. which one are you doing? how much are you getting? Ryan got 2000mg each time he got it.

      Good luck I hope you end up in remission like Ryan.

    • September 19, 2017 at 2:29 am

      Hi every one;

      Good yo hear some of u have improvments.

      I have done ivig for 3 times with no improvment.

      I dont know why my doctor dosent mention plasma exchange therapy or even cytoxin treatment!!

      As a mom in earlyer stage in CIDP

      **Im wondering do cytoxin has side effect in hair less or pregnancy ?

      Warm regards

    • September 19, 2017 at 10:43 pm
      Cytoxan treats certain types of cancer and kidney disease. Females must not get pregnant while on Cytoxan and for up to 1 year after completion of treatment.

      Common side effects include nausea, vomiting, loss of appetite, and temporary hair loss.