Experiences with

Cyclophosphamide

I don't know about you all, but as I head towards an appointment with the hospital, I become quite nervous and anxious. So last week I was manic in my lead up to my 9 monthly check up.. my house was tidy as I was up at 6 every morning unable to sleep... The day of the appointment arrived and 11.50

Cyclophosphamide is gold standard treatment but not sure if OK with kidney issues? I know it is a difficult disease to A) diagnose and B) treat but does anyone have experience of being told the same by their consultants that this is what remission may look like??

Left the hospital the day after, with more than 40 tablets of cyclophosphamide and Fludarabine in my pocket to take the next two days. The same day as the infusion I also got them later that evening, so three consecutive days totally.

Hi all! Had a very first and second cycles but just ended first week of third cycle FCR. The hospital part where I got the infusion of Rituxab went fine on Monday, but have been feeling much more tired and weak this time during this first week. Also nausea, but no sickness. Haven't had that previously

Just started on a course of FCR 26 days ago I came out in a rash all over my body. It started a few days after my chemo. It is unbearable now and consultant says he has no idea why. Cannot start my next treatment due to this painful rash. I have tried different antihistamines HAs anyone else had

Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about

After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying

At first they saw a Rapidly progressive glomerulonephritis that now after due mounths of cyclophosphamide, Prednisone and three cicles of intravenous injection of cortisone, has became GN. The creatinine is quite ok.

Had a Rheumy app today and this drug has been decided on the follow up to Cyclophosphamide infusions for ILD. I also have RA and Sjogrens. Any information on taking this drug would be helpful. Many thanks 🙂

So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained

Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation

I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections

I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness

The doctors are following a narrative in which the vasculitis gets out into remission by the cyclophosphamide, and then it is kept at bay by less brutal drug treatment. I gather that it isn't always the case though from some of the posts here.

I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????

My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07

Has anyone had any success with cyclophosphamide? It is chemotherapy, but I have been told it is not as bad as others on your immune system. I'd love to know how you got on. Thanks, S x

I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission for almost 10 years now and have been battling this rash for almost all of it. I would love to get anyone's feed back since my 6 month checkup is

Don't know if allowed to name firms but having spent 6 hours on web and phone I located an incredibly thorough insurer who was willing to offer insurance for Europe wide travel even though I am currently on iv FCR. They asked about all medications and seemed to understand CLL. It's called World First

A year ago today I began a chemo therapy journey to treat my leaukemia; a process that I faced blind, having no idea of what to expect or what the future might hold. There were ups and downs along the way but the positives far out weigh the negatives. So many walked along side me on my journey - many