the outcome of cyclophosphomide

[ijeasike]

pls those that have undergone cyclophosphomide treatment can you tell me if you got better after the six months treatment.

[1958]

Hi there, this is a really quick reply as Im just about to walk out the door but ..... Yes yes yes! I was on every med, and just felt total rubbish drained tired in pain you all kniw the score! Well I finally agreed to chemo, was dreading it, but its a smaller dose than given for cancer, and bar a little sickness after the first one, the rest were fine, had the infusion came out and fekt fine ...... I started on the 19th Dec 2011 (my bday being the 21st!) thought xmas would be horrid, but no. After all 3 treatments, I have never felt so well, it was the only thing that reduced the inflammation raging round my body. However, I wont start to go into all the other troubles like my career in med' ending after 24 yrs of loyalty (long hortid story I'll come back to if u wish?!) Employment tribunal ...... Worst experience of my life. £65,000 down, cant get work .... List goes on!! Going back to the chemo, ive been feeling poorly in the last month abd am going to ask Cons for oe more dose of chemo in order to "hit the lupus hard" rather than let it slowly progress worse.

Xx

[Hidden in reply to 1958]

Be interested to hear about your job experience. I've lost mine too - and circumstances sound similar re loyalty etc. I need some hope that there is life AFTER the chemo!

[ijeasike in reply to 1958]

1958:pls i will like to hear the story. I am presently on maternity and am hoping to change job but i know with the state of my health now am scared.

[ijeasike in reply to 1958]

i am about to request to get a letter from my gp to my employer to tell about my illness. i hope that helps me keep the job cos i need the pay really.

[Hidden]

Hello.

Well, I am still in the middle of it (have to have 6 and am about a week away from number 5), but yes - my kidneys are getting better (they say), and I am told that the lupus is subsiding... apparently my complement levels are in normal range (also PV), and antibodies seem to be fewer in number than previously

However, it has not been nice. I have not just suffered a little nausea, but horrendous sickness and vomiting the first month and then two or three days of nausea since then, in spite of Ondansatron. Also tired beyond belief, many days I've only managed to be dressed by later afternoon: I get up and have breakfast then have to sleep; then get up and have a shower, then have to sleep; then get some lunch and brush my teeth then have to sleep.... and so it goes on.

My skin has become so sensitive that going outside even for a minute or two without a hat and sunscreen produces a hideous itchy lupus rash on face and scalp, which seems weird to me if the lupus is going into remission, but apparently this can happen, according to the dermatologist. I have Elidel and Prototpic to help it (and have found an SPF 100 suncream on Amazon - made by Neutrogena, which is tolerable to wear). I read that hair loss usually happens near the beginning, but mine seems only now to be falling out. I have bad floaters in one eye, also ulcerating skin on my bottom lip which comes and goes with a mind of its own. I have little concentration and my memory is poor - I am tending to re-read things I have read before, which is easier to cope with!

There seems to be a pattern to the after effects of the Cyclphosphamide, and I'd be interested to know anyone else's experience of this. After the "infusion" (which sounds like a herbal tea but could not be less like one!) I feel woozy and dizzy and tired but can't sleep. You're supposed to drink masses of water to flush the drug through and protect your bladder from cancer, but my body seems to hold on to liquid for the first 24 hours - so I can drink three litres of water on the day of the infusion and still not pee as much as they say I should. Two - three days of feeling nauseous and very tired and having to stay in bed most of the time; then a few days of feeling relatively OK, until the effects of the drug reach the highpoint (the so-called nadir , about mid month. Then some more days of having to sleep sleep sleep and then about a week of relative relative normality before the next one.

One upside is that my prednisolone is down to 7.5mg (from 30!) and I am hopeful at after 5 years I might finally be able to stop it eventually. The idea of losing weight is quite cheery! Also my sister has driven me to all of the chemo sessions: we have not had such a good relationship since childhood. Getting my kidney function back is quite important too!

Bottom line: This stuff is horrid, to say the least, but it seems to work.

Hope the above is useful.

[ijeasike in reply to Hidden]

thanks Maggie, it is very useful am presently on a high dose of prednisolone (60mg) am due for another infusion next week (2nd one). I pray things get better. thanks again.xx

[charmaineholmes]

i was diagnosed with sle and my kidney was been serveley attacked, had 8 months of chemo and a year later i feel and look better, rash cleared up . the doctors said its stopped attacking my kidney now on a drug called mycophenalate which is like a tablet form of chemo put on this after the cyclophosphomide . i still get joint pain and fatigue but at least its not attacking my kidney at the momment . hope everything goes well for you take care .xx

[ijeasike in reply to charmaineholmes]

i had issues with mycophenalate, it disturbed my tummy but i may go back to it after the infusion. thanks dear.xx

[SRamkin]

For me it was horrible! I just left after the third session and never returned. Apart from the nausea, skin problems and fatigue, my face and body was starting to become deformed - in three months the good doctors had turned me into a depressed, enraged monster and never said a thing about getting better. Of course I was unlucky with my doctors.

[ijeasike in reply to SRamkin]

so how are you doing now ?

[SRamkin in reply to ijeasike]

I do not feel any worse than I did before the treatment - definetely better than how I was during the treatment -, I am still spilling protein, however I haven't gotten any tests since so I can't tell for sure.

The whole experience was a nightmare for me and I am really weary of doctors and their poisons now.

I hope you are feeling better and getting all the support you need - I know you need A LOT during this time.

Best Wishes xx

[ijeasike in reply to SRamkin]

PLS i think u shld go back to the doctors. u can change doctor if the one u have is not supportive. i feel is better to have check on ur blood and urine it is not so good to leave things like dat. i pray everything goes well with u. pls go back to treatment, things will gradually turn around for the better.

regards

ije

xxx

[Hidden in reply to SRamkin]

Please do go back to the doctor. Kidney failure is life threatening. I saw the renal consultant this morning - and he said lots of people can't tolerate cyclophosphamide, so you are not alone.

Talk to your GP if you can - but you need some treatment.

[didiz]

I had 6 months worth of cyclophosphamide with the last session on 29th December 2011. The 1st session was ok but felt the nausea really badly about 2 hours after the drip finished and the anti sickness tablets didn't stop this and having to stay awake to take the mesna tablets to protect your bladder was quite frankly a bit of a pain! My personal experience was that after each"chemo" session I felt queasy & tired for 24 to 48 hours but by the last 2 sessions I started to feel queasy when the drip was actually in my arm....however in the great scheme of things it was a small price to pay as it appears to have worked for me. Unfortunately I then had a 3 month wait before starting the next lot of meds mycophenolate to be be prescribed by Rheumatologist consult and my symptoms worsened in the interim but mycophen is now beginning to kick in and I am noticing an improvement (tho it is a small improvement).With misdiagnosis after misdiagnosis I was finally diagnosed with SLE with cerebral involvement but it seems to also have had an effect on my kidneys, mitral valve, liver etc I also have APS& Raynauds

This is the 1st comment I have posted here so i hope this helps?!

[ijeasike in reply to didiz]

thank you.xx

[flutterby]

I have had two sets of six month cyclo treatment. The first set definately helped, although it was a harsh treatment to have, I think the overwhelming tiredness was the worst part. The second lot, not so sure how much it has helped and it has put me into sudden menopause, which seems to have stirred up the lupus, so hard to tell what is going on! Wish you luck if you are starting treatment and hope it helps. xx

[ijeasike in reply to flutterby]

Flutterby, about the menopause i think am have the same issue. i have not seen my period since i started the lupus treatment (the entire drugs). my consultant told me that the Chemo treatment may have am effect on my fertility. i did put on a brave face but trust me it gives me concern am just 26 although i have a son Thank God, but u never know i may want to have a child 2mro.

[Hidden]

I am 52 - and my periods showed no sign of stopping. I have only had 2 since doing the cyclophosphamide thing.... I will be glad when they have properly stopped as there is definitely a link between high oestrogen levels and lupus flares for me.

I do sympathise with anyone who wants to have children though - and wish you all the luck in the world.

[ijeasike in reply to Hidden]

thank you xx

[LloydE]

I was on Cyclophosphamide in 1994 for around a year or so (it might even had been 2 years) on a dosage of 150mg daily. When i came off them my Dr said according to my Kidney finctioning chart when i 1st started them in hospital i was on 1 of out 10, but they were at a 7.

[ijeasike in reply to LloydE]

so how are u feeling now?

[LloydE in reply to ijeasike]

Absolutley fine, it did take a few years of drugs, and a no salt diet, (which i am still kinda on, it's more of a low salt diet now)

[ijeasike in reply to LloydE]

thanks are u still on meds

[LloydE in reply to ijeasike]

i stopped taking meds around 3 years ago, over the years i have been on prednisolone, calcium tablets, ratindine, azathioprine, diuretics. Then about a year ago a started taking simvastatin.

[ijeasike in reply to LloydE]

ok thanks

[didiz]

I am 45 and was advised that cyclo may affect my fertility and now with mycophenolate I was advised if I were ever to get pregnant there may be issues with development of the foetus. I too have entered perimenopause and my cycle is very hit and miss but because I take a high dose of warfarin when I do have a period they are very very heavy. Thank goodness I only have one every 3 months. One consult did say I could have my eggs frozen should I ever want to have a child but having had friends go through IVF and the drugs they use prior to egg retrieval.... well I am hormonal enough already!!! I too, put on a brave face when consult told me that cyclo may affect my fertility. I have never been maternal but to have that choice taken away did cause a few tears but it's just another of those lupus&aps things I will just have to get used to...

ijeasike it may well be worth having a discussion with your consult re having your eggs frozen to keep your options open if you want another child in the future

didiz x

[ijeasike in reply to didiz]

thanks didiz, i will discuss with my consultant on my next appointment about it.

[MandaM]

I was diagnosed with SLE in March 2000 by a renal consultant. I already had a degree of kidney failure, found at the same time as the Lupus diagnoses, cheers Lupus! I had 5 months of IV cyclophosphomide, refused the 6th month. Well this managed to keep me going until Jan 2005 when my kidneys had vertually packed in and was extremely ill but carrying on with work anyway, creatinines were 1600!!! I went onto dialysis before having a successful transplant in 2006 donated by an long time ago ex partner. Not had active lupus tests since i was diagnosed in 2000.

[ijeasike in reply to MandaM]

thanks for the info. How do u feel now? am having my 2nd IV on friday.

[Hidden in reply to ijeasike]

Hi - I'm guessing you feel a bit s**t right now (sorry for language but there is really no other way to describe it). The infusions and their aftermath will probably dominate your life for a next few months. Don't read posts from people who say they got up and went straight back to work.... I thought I was going to die after each one!

However, I am nearly a week past my 5th infusion, and I am beginning to feel that there is light at the end of the tunnel. I'm being careful, but I DO feel better, and I believe I can get even better than this. In a week or so I am going to start Mycophenolate - and I am very hopeful that this will make a long term difference to my health.

Chin up! I'm really feeling for you - but KNOW that this is going to make you feel a lot better in the end.

[ijeasike in reply to Hidden]

thank you. I had my 2nd dose on friday, went with my mum and baby so that i could have company. I dnt feel too bad i pray it gets better a we go. i ve been in bed all day and i will be doing alot of that this week cos my head is always aching.

thanks Maggi

ije xx

[Hidden in reply to ijeasike]

Maybe tomorrow, you'll feel a little better. I'm sending good vibes and a huge hug: cyclophosphamide is derived from mustard gas, which was used as a chemical weapon during WWII. Always remember you are a courageous war hero and you can win this battle!

xx

[ijeasike in reply to Hidden]

a quick question, pls when does the hair lose start?

[Hidden]

I read that it is usually between 3 and 6 weeks in - but that apparently it doesn't happen to everyone.

For me - it didn't seem to happen at all and I thought I had got away with it. But since number 4 I seem to find hair all over the place - there is always a stray one in my face or in my tea, or on the kitchen table or the computer keyboard. And I can see how thin it is getting. I just hope it stops soon!

Is yours going? (And how are you feeling?)

[ijeasike]

i have not started loosing the hair but i feel very weak, with body pain especially my waist and i have serious cramps that u can see my fingers and toes folding ( the pain is so bad ).my consultant reduced my water tablet but it has not helped. I have not felt so good this week. how about you how are u feeling