Oral Cyclophosphamide

Hi Cathy

i would be interested to know if anyone has had oral cyclophosphamide. Is this available on NHS?

i had Eribulin as my last chance chemo drug. but CT scans showed cancer had progressed so this was stoped 

So oncologists said to make most of my time and take some holidays which l have done and i have contact with a hospice. 

Recently had 3 trips to A & E and ended in a 5-day stay and 7-day stay. I am allergic to antibiotics which bring me out in rashes.

On the last 7 day stay l had X rays which showed changes to previous Xrays but was told not enough fluid to drain off. After 4 days was sent for lung ultrasound and had 1800 ml fluid drain off. 

In future not going to A & E but will contact my hospice contact who will get me seen in the Pleural Clinic.

Pam

Hi

GOsh, you sound a bit like me! 

I went to A&E about 4 weeks ago with breathlessness and was told that there was a small pocket of fluid on my right lung (it's been there a while and they've always refused to drain it) butt they'd drain it if I wanted - in 15 minutes they took of 1500ml before it started to really hurt so they stoppes.He said there was still about a litre to take. Al  I can say is that doctors obviously have massive pockets! 

It was like a miracle for four days - brwathing was better ans my random hiccups disappeared. However, symptoms started to creep back and last week's CT showed more fluid than there was before the drainage. Oncologist took me off Eribulin immediately as it was obviously failing to hold back the inevitable progression. Now due to have a permanent chest drain put in asap. 

He has offered me the oral cyclophos. on the NHS but he's given me the choice as he is faiy sure it won't work and might have more cons than pros! 

If I choose not to try it or it fails, then I'm on my own for as long as I've got left, not tbat I'm intending going antwhere for a while yet! 

I've not been referred officially to the hospice yet, but that might come I suppose!

IIt may be worth asling your team about the oral chemo and see what they say - they might have a good reason for not suggesting it - there seems to bs quite a difference between teams and even between doctors in the same team! 

Sending you virtual hugs!

Hello Weeblemum

How are you.

Have you gone on to have Oral Cyclophus ?.

I haven't had to have any more chest drains so far.  Had a check up and said only a very small amount, so no action needed for the moment.

I havent asked my oncologist about oral cyclophos,.as l thought l would see how you got on with it.

Regards

Pam.

Hi

I start the oral cyclophosphamide in the morning! For some reason I'm more nervous about this one than all the others! Not sure why - I think it's because it's everyday rather than being a cycle where you have a break from treatment for part of it! We shall see how it goes. It's low dose, so hopefully not to many see effect.

I now have a permanent chest drain fitted and the District Nurses come and drain the fluid twice a week. At the moment, they're taking just over a litre per week as any more than half a litre at a time becomes painful. The chest drain was really painful initially but is not too bad now except it lies under my bra so that can make it smart a bit! 

I'm more breathless than I should be given the fluid being drained so I think that my left lung might also be beginning to fill - it's been okay previously as I had a pleurodesis contain that lung two plus years ago, which has prevented the fluid building up.  Hopefully the cyclophosphamide. will help to slow the fluid build uaap - if not, the oncologist won't keep me on it as it probably isn't working in that case.

I'll see if I can remember to report back on how the tablets go!

Hope you're as well as possible - big hugs to you!

Hi Weeblemum

How have you got on with cyclophosphamide. My hospital do not have this drug.

I havent had any further treatment since May 2019. I now have a liver problem and waiting for an ultrasound to see if l need fluid drained off lung.. I have made it to Christmas and New year, but may not have much longer.  Its been 11 years since being diagnosed with Breast Cancer, My doctors say l have done well to last this long.  

So sorry about the delay in reply! I had cataract surgery just before Christmas and now find keyboard work very difficult due to the difference between the two eyes! Hoping that I'll get the other one done soon so I'll be in full working order again (I wish!) 

The oral cyclophosphamide was going well with regard to side effects etc, although not sure that it was working - mt oncologist was giving it another couple of months to give it a chance given the fact that I was coping with it quite well! 

However, I was taken into hospital for a week before Christmas due to pneumonia and flu (even though I had the jab!) and they stopped the chemo and the anticoagulant injections I was on. They discovered brain mets whilst I was in there, and they'd bled, hence the reduction in anticoagulants.

I had another Body CT and brain MRI to see what's going on now, and go back to see oncologist next week. He is planning on putting me back on the chemo for a bit to see how it goes! 

As for lung drainage - hope your ultrasound went well and that any drainage you needed was successful. I have a permanent chest drain fitted and we drain every other day at home. We get over half a litre every time, so whatever my body doesn't do any more, it seems to produce excess fluid at a good rate! We used to have to wait for the district nurse to come and do the procedure, but now we do it ourselves, which leaves us free to get on with stuff for the rest of the day. 

I'm apparently on my last legs now - I was told that I wasn't likely to come out of hospital before Christmas due to the infections and the brain bleed, but I was in 6 days and recovered from the flu quicker that my OH!  However, I'm not planning on going anywhere yet, and I'm sure you feel the same! 

Keep plodding on! Hope your liver and lungs are as good as they can be at the moment...

Big hugs to you!