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Scleroderma & Raynaud's UK (SRUK)
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Starting chemotherapy (Cyclophosphamide)

Hi everyone, I hope you are all having a good week :)

I will be starting my first round of chemo next week with cyclophosphamide as my scleroderma is affecting my lungs. I wondered if anyone has been through it or has any advice/tips? I’ve been told the dose is not as strong as they use for cancer patients, but naturally I’m still anxious regarding the side effects and the concept of “chemotherapy” itself.

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Sooo sorry about your cancer.

Best wishes for being cured.

Take care and bless you.

😊🌸🌿🦋🙏🤗💗😘

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Thank you, but the chemo is for my scleroderma (as it affects my lungs - I have edited the post to avoid confusion!)

Thanks for your wishes x

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Ohhh...my apologies. I’m sooo sorry about your scleroderma and the lung involvement. I have Sjögrens Syndrome and asthma so I understand lung problems by disease too.

I have a dear friend that is suffering from scleroderma and I somewhat understand it.

I’m sooo sorry that you suffer with this debilitating disease.

I just prayed for you and your needs. Please take care and best wishes.

😊🌸🌿🦋🙏🤗💗😘

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No need to apologise! Thank you so much for your kind words. I wish you and your friend all the best ☺️🌸 xx

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Thank you dear the same for you too. ♥️🙏😘🤗😊

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I had cyclophosphamide a few years ago for Scleroderma and had several sessions when I was an in patient for 8 weeks. I then had regular sessions as an outpatient when I would have a cyclophosphamide infusion for 6 hours.

Everyone’s body is different and it can take a lot out of you and I found I needed a lot of rest afterwards.

Don’t overdo things.

Good luck😀

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I have taken some time off work initially to see how my body reacts, I think it’s more the fear of not knowing what’s to come. Thanks for your reply and advice x

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I’d forgotten about the nausea, so make sure you take the anti sickness meds and loo visits are strange while hooked up on the machine.

Keep an eye on the machine to make sure it is working properly cos I had 3 different faulty ones. Don’t worry about the cannula I have bad veins, but they always managed to get them in, lots of liquids help.

You’re getting a lot of good advice here.😀

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Thank you, yes I really appreciate all the help and support on here!

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Just be sure to take the anti sickness the minute you feel a bit heady.If you dont feel heady be sure to take them before you go to bed.

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Yeah I’ve read that the nausea can be quite severe for some people. Thanks for the advice x

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Hi,

Drink lots of water the days before and on the day. It is a pain hving to go to the loo while hooked to the machine, but you really need the fluids. Also, take some gentle laxative such as senna starting the day before and for a couple of days later and lots of fibre in your food, as constipation was by far the worst problem for me. Lots of rest the day after, or for a couple of days if you can. Best wishes, Pino

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Hi,

Thanks for the advice. It’s nice hearing actual experiences rather than looking online or hearing the whole list of what symptoms you could experience because that was just too overwhelming. I’ve been quite bad with my fluid intake recently so that will be my aim until Tuesday!

Thanks for your reply and advice x

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I had cyclophosphamide 17 years ago in 6 infusions and the only thing I remember is the trouble they had putting the cannula in. I drove to the hospital, walked the dog, went to work so not a lot could have been wrong. Anyway don’t worry we are all here to support you xxx

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Ah yes, my veins used to be very good for drawing blood but as the skin thickens, they are getting harder. I’m hoping the nurses will be somewhat used to this but we shall see.

Thank you, I feel a lot more positive after this. I will just have to see how my body reacts and take it from there I guess x

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Hi I had the cyclophosphamide as well I had 11 doses for diffuse also. It worked for awhile but it’s effectiveness wore off after a couple of months. I have severe heart involvement as well so know only too well the need for something to work to calm the disease down. What I was going to say was if like me the skin is too thick to find veins you could have a picc line put in which can last for your course of treatment. I had this but after treatment 6 my skin started to react to the line so thankfully had a Portacath put in which has become a life saver for all subsequent treatments. So don’t worry there are lots of options still open to you if the veins are bad. I hope your treatment goes well.

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Thank you very much. Yes I also need this to work, so I am hoping it improves my lunch function. I had a small procedure done a while back and they were able to cannulate me so I’m hoping it won’t be too bad at this stage, it just takes a bit of time to find the right one. It is good to know there are options if things worsen though.

Thanks for your reply and I wish you all the best too x

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I had 6 pulses of cyclophos infusions earlier last year every 4 weeks for my scleroderma. I am having more infusions now and have just had my 4th treatment and they are planning on giving me 6-12 at 4 weekly intervals this time. I have been very lucky in that I tolerated it well. My main fear when I first had it was that I would lose my hair but I didn’t and haven’t lost it yet. I do not work due to the scleroderma so don’t know how I would have coped having to work during the treatment. I generally feel nauseas and more tired than usual for about 5 days after treatment and then improve. I drink a lot of water as recommended. Important to stay away from people who have infections etc as your immune system will be very low. Good luck xx

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Thanks for the advice, I’m glad to hear you generally tolerated it well. Hair loss is something that worries me too but I recently got it cut short so I’m hoping it won’t be anything drastic.

Another thing I am worried about is the fact that flu season is approaching during the time of my infusions. Also the fact that I live with my niece who is 5 and has just started school and will carry all sorts of germs, so I guess I will just have to be more careful without becoming a complete germaphobe?

I hope your treatment is going well, best wishes xx

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I understand completely. Last year having my first course of cyclophos I didn’t venture far and avoided crowds. I always carry antibacterial gel with me everywhere. I have an 11 year old son and was advised if he had any bugs etc. to not kiss/cuddle. I have the flu vaccine every year so do make sure you get that too. Be careful if your niece gets the flu vaccine as the nasal one that children usually have is a live vaccine and a higher risk for you to be around (at least that is what I was told so check with your doctor). Try and avoid people who are unwell. This time I have been less careful and am currently nursing a cold but hoping it doesn’t prevent me continuing with my next infusion in 2 weeks 🤞.

Try not to worry too much.

Best wishes

Sarah

Xx

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I'm having my chemotherapy next week too! It's my 5th time and I have IVIG (intravenous immunoglobulin) every 8 weeks now. Originally it was every 6 but after the first round (set of 3) they decided to start spacing me out. I think the eventual plan is a maintenance dose once a year(?)

I also have a lower dose than is used for cancer and although I kept all my hair, I have noticed my eyebrows thinned a bit and my eyelashes grow weird now, but whether that's the disease or the chemo I couldn't say. I do tend to feel a bit sick during the infusion and I get hazy vision (hard to describe but it's like everything is moving and the colours blend together), but I believe that everyone reacts differently and if theres any sign of a problem your infusion gets stopped, and your rate of infusion will be lowered (if its slower I think theres less risk of side effects).

I am now impossible to find a vein on. They have a special team (the vascular peeps) who come down with this big ultrasound thing to find one and they put in a canula that's a bit longer than usual so it lasts the 3 days of my infusion. I think this time I need a mid-line which gets put in under local anaesthetic by a doctor in a small sideroom because it was impossible to canulate my last time. So dont worry on that front, theres always options and they're usually prepared for people who are difficult.

Chemo sounds scary and telling people you're having chemo always makes them think cancer- but its honestly not that bad and I am doing infinitely better since I started. Keep us posted with how it goes :)

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Thank you so much for sharing your experience. It does sound very scary when you mention chemo and then confusing when you say “but it’s okay I don’t have cancer” lol

Almost everyone has mentioned nausea but never heard about vision before. But I guess it’s true that everyone will react differently and I’m just wanting to get the first one done to see how I react, to better prepare the next time. That’s also good to know about slowing down the infusion if things get too intense.

Yes the venous access I was slightly worried about, but they can still manage at the moment, it’s nice to know there are other options if they can’t.

Is there anything you’d recommend to take? I’ve got things to keep me occupied (laptop/puzzle book/reading book/snacks) but is there anything else?

I’m glad to hear that your treatment is going well and that you are feeling better, it’s comforting knowing I’m not the only one out there - and everyone here is so supportive and encouraging ☺️Xx

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Good luck with the treatment, hope it goes well x

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Thank you ☺️

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Hello, sending you positive thoughts and hugs x

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Thank you very much 😊 sending lots back too! Xx

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I had 6 monthly infusions of Cyclophosphamide 3 years ago, my main bit of advise would be to make sure they give you some anti sickness meds both before and some to take home with you, also to drink at least 3 litres of water after each treatment, hopefully they should also give you some meds to take in the hours before your infusion to protect you from the effects of it, I think it’s called Mensa.

Mine made me feel awful for quite a few days but everyone is different so be prepared, my treatment has definitely helped me although it didn’t feel like it at the time.

I wish you all the best, please let us know how you get on.

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