Cyclophosamide experiences please?

[roobarb]

I am due to start infusions on Tuesday. This treatment has been fast tracked, so I've had little chance to do any research & ask questions. If anyone can give me an idea of potential side effects, & benefits to be expected, I would be very grateful.

[Hidden]

My experience is that it was truly vile - I don't even want to think about how vile it was - but it works. Make sure they give you ondansetron and get given mesna too if you can to avoid bladder problems.

On the plus side - the renal nurse who administered my infusions told me that she had another patient who skipped out every time - no vomiting or nausea and went straight back to work. So clearly it could go either way for you and I really hope it goes well!

My fingers are crossed!

[Hidden]

Sorry to be so blatant - but you wouldn't want it sugar-coated - would you?

[roobarb in reply to Hidden]

Thanks Maggie, I would rather know the reality than go in blind. Sounds horrible though, was it worth it? Did you have kidney involvement, & did it get that under control. Did you loose your hair from it?

[Hidden in reply to roobarb]

My kidneys were failing. Massive doses of steroids were not helping (3 x 1000mg infusions methylpred in 3 days).

Now my kidneys are fine (back at about 46% which is plenty). I still have joint pain and fatigue and sun sensitivity (that is way worse than ever - it reacted to the Cyclo!) but I won't die from that.

Hair: I lost quite a lot of it (and it was already thin from years of steroids). It has grown back - I no longer have a bald patch at the back, and I have a nice thick fringe again .... only trouble is it is CURLY and the rest of my hair is straight.... Heehee!

My periods stopped and haven't come back but then I am 53.

[roobarb in reply to Hidden]

Thanks again Maggie, my kidney biopsy has been postponed several times due to my health, & at the moment is thought to be too risky. So I don't know the full extent of any damage, but rheumy & nephrologist have had concerns for 6 months. I suppose if I had biopsy & results, I would feel more ready for this. But I have got to trust the docs know what they are doing.

[Hidden in reply to roobarb]

Are you swollen? Legs and feet? Belly? Fat chin? Very tired? Very stiff - but maybe not in as much pain as sometimes?

Cyclophosphamide is fairly hideous - but it goes past quick...

What to say to make you feel better about it? Only that eventually you will feel better, and you can't risk letting your kidneys get worse - you need them.

Think of it as joining an elite group of hardcore survivors.

Does that help?

[roobarb in reply to Hidden]

None of the above, maggie. My kidney probs came on quickly & may be associated with vasculitis. Hence need for biopsy, I guess.

Also possible APS caused DVT & MI within 3 weeks of each other. I've survived a lot already, but still up for more of a fight. X

[flutterby]

Hi, I have had two rounds of cyclophosphamide treatment. I would describe it as quite a tough treatment to go through. It is quite a long day, because they have to check blood and hydrate you prior to the cyclo. You can feel nauseous, I never did but they give you anti sickness tablets. I remember also being advised to drink plenty after the infusion, to wash it out of the bladder. For me the worst thing was being utterly wiped out.it is good at bringing things under control pretty quickly and I definately got some benefits from the treatment. The second lot did put me into sudden early menopause, which has brought its own delights! I think this is uncommon to happen in first lot of treatment. Wishing you all the best with it, I would say get plenty of rest afterwards. Take care xx

[roobarb in reply to flutterby]

Thank you flutterby. I'm glad to hear it got things under control for you. Did you also have lupus kidney disease?

I really wish I had more time to get my head around this. I was originally having rituximab in a couple of weeks, & then because of complications my rheumy has decided on cyclo on asap.

Sorry for all these questions but, how long did it take before you actually felt better? How far apart were your infusions, & did you loose your hair?

[flutterby in reply to roobarb]

Hi, I understand how hard it is to get your head round. I had cyclo because of brain involvement rather than kidneys. I think, and the first lot was several years ago, so my memory is fuzzy, it was a couple of months before feeling like I was benefitting from the treatment, I had six infusions, 1 a month for 6 months. I did loose patches of hair in the first lot of treatments but not in the second. The first lot I was taking oral steroids along with it, the second time I was getting steroid infusions as well, which I think was preferable to oral steroids, and made me feel a bit less crappy after the infusions. I have had rituximab as well and to be honest found that a much easier treatment with longer lasting benefits. Although as I understand it cyclo does a better and quicker job of suppressing the immune system. I have heard of people having a combination of cyclo and rituximab. Sending you hugs xxx

[roobarb in reply to flutterby]

Thank you for your patience & understand, flutterby. What a time you must have had with all these treatments! We put our trust in the doctors & the drugs to make us well, but it's a hard process to go through when the drugs are so strong.

My feelings are mixed up between fear of the unknown & hope for the future. My biggest question is will this improve my quality of life. But please don't feel you have to answer that. I hope I get chance to speak to my rheumy tomorrow.

Very best wishes. X

[flutterby in reply to roobarb]

My answer would be I really hope so, and your consultant will be giving you this because they feel it is the best course of action for you, especially if you were all set to have different treatment. Hope that tomorrow goes smoothly for you, let us know how you are, and have another virtual hug! Xx

[roobarb in reply to flutterby]

Aw thanks flutterby, that's so lovely. X

[pattismith]

I had infusions every fortnight for 6 months, was a long day as was mentioned before, but the staff on the Renal unit were wonderful and very attentive, and big comfy chair. I always used to take a good book with me.Like you l didn't have anytime to come to terms with it as l didn't even know l had Lupus !! Just by chance a urine sample and it had blood and protein in it and l was fast tracked for emergency bloods, scan, followed by emergency biopsie. Still didn't know what Lupus was and within 2 days of biopsy got a telephone call from hospital to come in the same day to start treatment - still didn't have a clue what that entailed until l got to the ward and all was explained and l was on my own. I took the anti sickness tablets each session and wasn't bothered with sickness, just tired the day after. "2 years on and still on a cocktail of drugs for life - but at least l still have functioned kidneys ( even though they were already badly scarred by then. Things have improved immensely over the last 2 years even for me, it did take some time for things to improve, but they have and thats what counts. I did have some hair loss but nothing noticeable, and hair is fine now and nice and long and healthy. It did bring on the menopause, not that it bothered me, l was 48 and have 5 children so no worries for me there. It was what was needed at the time and it worked wonders for me. Try not to worry as l am sure you are doing , but think of it as a step in the direction and look forward to getting even better after the treatment. Thinking of you and hope all goes well for you xxxx

[roobarb in reply to pattismith]

Wow patti, what a shock for you & then the whirl wind of treatment. I've been ill for 15 years & diagnosed 7 years ago. I've done lots of reading about lupus, but never imagined it would eventually hit me as badly as these past few moths. But at least I was more prepared than you.

I must admit it does all seem very unreal. Can this really be happening to me, have they got the wrong patient, blood tests, etc. But I am trying to think ahead beyond the treatment to a better life than I currently have, & try not to dwell on the actual period of treatment.

Thank you for your support & positive thoughts. I've got my kindle ready, a very kind present from work. Where I hope get back to after all this. I've got my lovely husband, my amazing little sister, some wonderful friends & a great rheumy, who have supported me in my lupus journey so far. So I am a very lucky girl really.

It's good to hear you are doing so well, & long may it continue. X

[pattismith]

You will be fine and feeling the benefit soon , it's good gear and on a plus usually leads to lower dosage of steroids, so that has to be good news for us

[emmalemon]

2 year into Diagnosis I had a flare, and the renal drs took me off Mycophenolate and put me on an oral dose of Cyclo. They tried to limit the dosage, I was 35 and had never had children and wanted them, as soon as my kidney function improved they took my off it. But unfortunately my periods stopped soon afterwards and the early menopause was right behind that.

Sorry to be down but that's reality, but so is the fact that now the menopause is over, I've been well ever since ( still on Mycophenolate etc still have lupus) but I am pretty much pain free, live a full active life run my own very successful business ( it's become my baby I think

Good luck with it, you've got to take the rough with the smooth, e x

[roobarb in reply to emmalemon]

Thanks Emma. I am so sorry that this treatment meant you couldn't have children. That really is a tough blow to take, along with the illness & the other effects of the treatment. I was warned about this, & thankfully I am past that stage now. I was not told about possible menopause though. Others have mentioned that on here, so now I am prepared.

It is good to hear that you lead such a full & rewarding life now though. That is what I so want out of this. Lupus has gradually eroded my life, in every way, & driven me to the edge of despair at times. I am so looking forward to getting out & about, & being able to spend time with friends & family again, when I feel better.

I realise that there are tough times to come with the treatment, but hopefully the benefits will soon make me forget these.

Thanks again, & very best wishes. x

[Twilo76]

When I was diagnosed my symptoms were pretty bad so my rhuematolgist put on cyclo for 6 month infusions, started off fortnightly then once a month for 4 months. I was even in for one of my birthdays lucky me!!! As everyone has said it is a long day, I use to take a book and music, my mum would come and sit with me but after a few stints I preferred to be by myself. (Not that I could tell my mum this!) I felt different each time, sometimes I would feel crap as it was happening, sickness, tiredness, other times it would be later on or the next day when the sickness would come. It put me of my food for a couple of days after, and I love my food!!! I was fortunate as I didn't lose my hair. I didn't have kidney probs, I think I was given it just to blast my body because of my really bad flare. I use to go in with a positive head, as hard as it can be sometimes and take it on the chin! My partners brother was getting chemo around the same time as me he had been diagnosed with hodgkin's lymphoma, he was only 26 at the time and given a 50 50 chance of survival, he had an amazing attitude and wasn't going to let it beat him, (he was given the all clear ) and was an inspiration to me as he was getting a cocktail of drugs pumped into him and didn't let it beat him! It made me feel the same way about my treatment. Sorry for going of on one, but this was my experience of cyclo. I really hope your treatment goes smoothly and you get through it fine. It was worth it in my experience. Take care Roobarb

[roobarb in reply to Twilo76]

Hi twilo, & thank so much for your positive message. I am having the treatment in the oncology unit. So, like you, will think of what the other patients are going through & hopefully gain the same kind of inspiration from them.

I went there today after my preparatory blood tests, & all the staff were so lovely & welcoming. Because it's all been done in a rush, my rheumy will come along to go through the consent form & explain things. So I will get chance to ask questions then. I don't know how many infusions, or how frequently yet.

I guess once the first one is over, you are a little more prepared. Although as you say, each one can be different. So I will try not to take to much for granted & take each session as it comes.

All the very best. X

[roobarb]

Thank so much to everyone for sharing their experiences, & for their wonderful words of support. I really couldn't have got this anywhere else other than from fellow lupies.

I feel so much more prepared for tomorrow now, & I am thinking beyond the rigors of the treatment to the better times that lie ahead.

Love & best wishes to you all. X

[pattismith]

Be thinking of you tomorrow, sat there in comfy chair, enjoying a good book and the cool air conditioning, stay positive and try to enjoy people looking after you. xxx

[roobarb in reply to pattismith]

Oo you make it sound almost delightful! Thanks for your kind wishes. X

[Herb]

My experience about 18 years ago was also vile, and it did not help me. However it was useful in the long term because after I started on warfarin, which did help.Lupus is such a complicated condition sometimes you need to try things to see if they work. It should not do any harm long term but its not nice. Its a form of chemotherapy.