Cyclophosphamide.... HELP

[AshtonRains]

I have just been told I need to start Cyclophosphamide treatment once a month for 6-12 months, has anybody else had this? And what side effects are there? As I am worried about hair loss???

[nannysue1950]

A couple of years after been diagnosed with scleroderma I was found to have lung involvement (fibrosing alveolitis) and given cyclophosphamide. I had a 6-hour infusion once a month for 6 months. I was told this was a short, sharp treatment to help stop the progression of the lung involvement. This was back in 2001 and, although I do have slight breathing problems, my daily life is not affected too much. Re hair loss - that worried me as well. It all depends on what dosage you're on - you must ask your rheumatologist. The worst effect for me was the sickness which occurred the night after the treatment. Although I was given anti-sickness tablets, I was still quite sick and didn't feel too well the following day either. After that I was fine, until the next session. Good luck

[lilbit]

i also had 6 monthly infusions. no hairloss, just wiped out the next day and somesickness at the end of the course. when i see people who have not had this option i am thankfull for all my treatments. tho very fed up with it all. I have diffuse cutaneous scleroderma and raynauds, since 2007. thank goodness for early diagnosis and wonderful local care and treatment at Bognor War Memorial Hospital, Rheumatology Unit.

[AshtonRains]

Thank you both so much for your replies. I am only 20, soon to be 21 and this is all very scary and new for me. Not too sure what to expect, as only recently been diagnosed, but have had Raynaud's since 15.

[coco13]

since you are so young, you should have been told that cyclophosphamide will cause ovarian failure and instant menopause. If you decide to start treatment, you will have be able to have children. A BIG side effect. I was on daily cyclophosphamide for my pulmonary fibrosis secondary to scleroderma. I took it everyday for eight months before my docs at Cleveland Clinic stopped it. It was very toxic to me and produced very little benefit to my lung inflammation. I was switched to Cellcept in March 2010 and have been on it every since. My lungs have improved remarkably. I have been on 2-3 L of oxygen since July 2009 and just two days ago my 6-minute walk test showed I didn't need supplemental oxygen anymore! I will still use it at night. My point is that everyone responses to the current treatments differently. In my case, cyclophosphamide didn't work well and Cellcept did with no significant side effects. Please get all your questions answered about Cytoxan (cyclophosphamide). The new clinical trial SCL-2 is studying Cytoxan vs Cellcept and my doctors at Cleveland Clinic said we may see with it that Cellcept becomes the drug of choice for systemic scleroderma. Ask your doctors!

[AshtonRains in reply to coco13]

It does not stop you from being able to have children and certainly does not start instant menopause. Its a good job I had already spoken to my Rheumatologist before I read your post or I would have scared myself silly. It depends on the individual. For me, because I am so young it will not affect my fertility. Please think before posting things like that.

[Toniraquel]

I have taken cytoxan off and on for ten years. This go round was once a month for 6 months. I was on 1850mlg-IV. I didn't lose my hair but it sure thinned out! The steroids they typically give with the cytoxan seems to have more side affects that the chemo, at least for me. Weight gain, brittle hair, hair on face etc. When I first started cytoxan I had to sign a form stating I would not have anymore children-thats something you really need to look into if you want children. Wish you all the luck and sorry your having to go through this.

[flickchick777]

Like nannysue and lilbit, I had the once a month infusion for 6 months to treat pulmonary fibrosis due to scleroderma. The only side affects was the sickness and feeling wiped out for the next couple of days after. My hair thinned out a little but not too much. Then again, I had a lot to start with. =) Also, menstruation time was a bit more harsher than normal (cramps and pms). That was almost 3 years ago. So far, I am doing well and the last CT scan of my lungs showed no scar tissue!! So it worked pretty well for me. =)

I know it's scary but you are not alone! Hang in there!

[AshtonRains]

Thank you all so much for your comments - they really are appreicated.

It horrible to think that so many people have to go through this, but having a positive attitude is vital, something i've learnt over the past few months!

Best of luck to everyone!

x