New to Cytoxan (cyclophosphamide)—advice and help appreciated

Posted by Becky, Volunteer Mentor @becsbuddy, Oct 16 4:55pm

I am scheduled to begin Cytoxan next week and feel like I know nothing. I was an oncology nurse for the last 11years of my career, but… Can anyone tell me what their experience was like and what they wish they had known? I have an autoimmune disease, not cancer, and this is all so new and frightening. Can anyone help?

My husband has autoimmune encephalitis CASPR2
He has received Rituximab infusion Twice to help
May be along the same
If anyone has this autoimmune please give your experience and help!!

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@becsbuddy, I'd like to bring fellow members into this discussion: @kandc317 and @larsmayo who have experience with Cytoxan (cyclophosphamide) for multiple myeloma and @markwroberts and @tomr, who were prescribed it for autoimmune disorders. I hope they can answer you questions about what to expect and what they wished they had known to help you prepare.

Becky, when do you start Cytoxan treatments and how often?

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@cag

My husband has autoimmune encephalitis CASPR2
He has received Rituximab infusion Twice to help
May be along the same
If anyone has this autoimmune please give your experience and help!!

Jump to this post

@cag, welcome. You may wish to join this discussion:
– Autoimmune encephalopathy anyone? https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/

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@cag

My husband has autoimmune encephalitis CASPR2
He has received Rituximab infusion Twice to help
May be along the same
If anyone has this autoimmune please give your experience and help!!

Jump to this post

Hi this is @markwroberts. I have a neurological disease called rhombo myleoneuropathy which is a painful rapidly progressing autoimmune disease. I just started a 6 month course of Cytoxan which I understand is the normal length of treatment. I'm through month 2 on the way to month three is a little over a week. I had Rituxan twice before which helped with numbness in my feet but not much else. Cytoxan is a stronger medicine and I do have 2-3 days where I feel extremely tired and slightly nauseous. However, on day 2 of my first infusion I felt a reduction in the symtoms in my hands. my second infusion has had even more effect. So far the reduction in symptoms has been good when they are happening but transitory so by day 14 I'm almost back to where I started. My doctors had no idea whether Cytoxan would even work on my disease so I'm pleased and hopeful that my next infusion will have even more of an effect. The first couple days are bad for me but the benefits make it worth it.

So what have you been told and what are your concerns?

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@markwroberts

Hi this is @markwroberts. I have a neurological disease called rhombo myleoneuropathy which is a painful rapidly progressing autoimmune disease. I just started a 6 month course of Cytoxan which I understand is the normal length of treatment. I'm through month 2 on the way to month three is a little over a week. I had Rituxan twice before which helped with numbness in my feet but not much else. Cytoxan is a stronger medicine and I do have 2-3 days where I feel extremely tired and slightly nauseous. However, on day 2 of my first infusion I felt a reduction in the symtoms in my hands. my second infusion has had even more effect. So far the reduction in symptoms has been good when they are happening but transitory so by day 14 I'm almost back to where I started. My doctors had no idea whether Cytoxan would even work on my disease so I'm pleased and hopeful that my next infusion will have even more of an effect. The first couple days are bad for me but the benefits make it worth it.

So what have you been told and what are your concerns?

Jump to this post

@markwroberts Thanks so much for responding! You’ve eased my mind already. I remember Cytoxan as a very powerful drug that caused lots of side effects. My real problem, I think, is that I just can’t come to terms with having the autoimmune disease in the first place . I know I have to accept the disease and treatment , so I can get on with life. You letter has helped, thank you.
We’re you able to get your disease quickly diagnosed or was it a long process? Autoimmune diseases are just no fun!

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@becsbuddy – Becky, I had Cytoxan as one of the drugs in chemo for breast cancer. I was first given tablets, but I did not tolerate it- sensitive stomach- and I was switched to infusions, better tolerated. I was also taking Zofran for nausea.
For my first autoimmune disease some years ago, I was given injections of methotrexate- another one of my chemo drugs. Nausea, fatigue mostly.
When you start Cytoxan you will be monitored with blood tests to stay safe. I always think that I’m not committed to anything forever. If you don’t tolerate it well, there are other treatments. Good luck!

REPLY
@becsbuddy

@markwroberts Thanks so much for responding! You’ve eased my mind already. I remember Cytoxan as a very powerful drug that caused lots of side effects. My real problem, I think, is that I just can’t come to terms with having the autoimmune disease in the first place . I know I have to accept the disease and treatment , so I can get on with life. You letter has helped, thank you.
We’re you able to get your disease quickly diagnosed or was it a long process? Autoimmune diseases are just no fun!

Jump to this post

Becky – I noticed you posted about CLIPPERS, and then this "I just can't come to terms with having the autoimmune disease in the first place". I'm just writing a short piece about how having this rare condition feels and would love to connect – I too have such trouble with accepting. Are there more folks here diagnosed with CLIPPERS? Bill Crum has a blog in the UK I could share. We could also ask @colleenyoung if we could have a group set up? thoughts? @becsbuddy and @colleenyoung ? Thanks – I'm reconnecting with Mayo now…

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@movingtomadison

Becky – I noticed you posted about CLIPPERS, and then this "I just can't come to terms with having the autoimmune disease in the first place". I'm just writing a short piece about how having this rare condition feels and would love to connect – I too have such trouble with accepting. Are there more folks here diagnosed with CLIPPERS? Bill Crum has a blog in the UK I could share. We could also ask @colleenyoung if we could have a group set up? thoughts? @becsbuddy and @colleenyoung ? Thanks – I'm reconnecting with Mayo now…

Jump to this post

Hi @movingtomadison, welcome to Mayo Clinic Connect! I think you may have already found the discussion group where members are talking about CLIPPERS here:
– CLIPPERS:Looking to connect with others https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/

Have you ever taken Cytoxan as a treatment for CLIPPERS?

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@astaingegerdm

@becsbuddy – Becky, I had Cytoxan as one of the drugs in chemo for breast cancer. I was first given tablets, but I did not tolerate it- sensitive stomach- and I was switched to infusions, better tolerated. I was also taking Zofran for nausea.
For my first autoimmune disease some years ago, I was given injections of methotrexate- another one of my chemo drugs. Nausea, fatigue mostly.
When you start Cytoxan you will be monitored with blood tests to stay safe. I always think that I’m not committed to anything forever. If you don’t tolerate it well, there are other treatments. Good luck!

Jump to this post

@astaingegerdm Well, I had my first dose of cytoxan without problems, but the IV steroids just about did me in! No one mentioned that I could have too much steroid in my system and to avoid acidic foods. Oh my goodness! Went to the ER for what they thought was a perforated ulcer. Owweee. Now, I’m well prepared for my second dose next week. Wish me luck!

Liked by bustrbrwn22

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@becsbuddy -Becky- That’s awful! I don’t recall having a problem. However, I was probably taking some acid reducing medicine already for my reflux.
Other reactions to steroids include insomnia, some mental health issues. Good luck next time!

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Sorry to hear about the steroids, but glad that you tolerated the Cytonan. I seems like the steroids don't last that long in your body. Good luck!

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