Has anyone else that has been on cmf had cock ups made with their care and can offer me advice on where to go next as i am absolutely fuming. Have had 3 sessions of cmf following previous doses of caf and fec, always had cmf with 2 weeks between part b and part a, until today when i get a phonecall from the chemo suite to say should have been 3 weeks. How scary is that? They have only just realised their mistake, they have only just confirmed with onc the time gap there should be between parts a and parts b, and all along they have basically been overdosing me. I intend to make a formal complaint when i go for my next chemo next friday, but now instead of rejoicing that i only have 3 more needles then i am finished i have to go back to four. I feel so disappointed with the care i have recieved here in leicester as i have always confirmed with the nursing staff that it should be 2 weeks between treatments and they have always said yes thats correct. Maybe they should employ chimps to dispense to chemo as they may take more interest in my wellbeing rather then talking about holidays with their colleagues. I am very tempted to cancel final chemos as i really don’t have any faith or confidence in the staff at lri anymore and this is scary stuff. Sorry to rant but i do feel absolutely gutted that their cock up has put plans for holidays on hold again now as well. Someone please tell me whether i am right or wrong about the time period between cmf
I’m having 4 course of CMF (just finished the 2nd course) after having 4 EPI’s.
I have chemo on day 1 and then again on day 8 then nothing for 3 weeks when it starts all over again.
One of the nurses at the beginning stated it was 2 weeks in between instead of 3 but I had the paperwork to show her it was 3 weeks so perhaps it could have been 2 weeks in the past!!!
I’d definately complain as they should not be making mistakes like that but I’d never cancel my chemo due to their mistake as that could have an effect on me. Just curious, why are they giving you an extra session, is it due to the wrong timings???
Hi Mounties
I’m really sorry to hear that. You are right, it is normally three weeks between D8 CMF and the next cycle. I find it hard to believe that they didn’t know it. I’m not sure what the repercussions are for you, having a two week gap - obviously your neutrophil count was ok, or else they wouldn’t have given the chemo so be reassured by that. I think you have every right to make a complaint, can you get in touch with the Patient Liason officer at the hospital?
One of the most annoying things for you is that you have lost confidence in the nursing staff, however, remember that it is not there total fault alone - a pharmacist had to be dispensing the CMF and a Dr had to be prescribing it - they too should have noted that the interval was two weekly not three weekly and they are responsible as well.
Let us know how you get on,
Fuschia
xxxx
PS Do not cancel your final chemo !!!
Have spoken to pals service after being told by chemo suite there was no longer one in leicester, how many mistakes can they make. I have told them about how i feel regarding my treatment and they are going to contact chemo suite to get someone to call me back. Can’t see a lot of point in that as they will cover their own back again as they have in the past. Do they realise how stressful it is to go through chemo and breast cancer without the added stress of losing all confidence in the staff there. Why didn’t they check with onc prev instead of waiting till final part a to check and realise their mistake. After all my blood counts have been ok so why couldn’t i have gone along and had chemo today. Break away with husband has now had to be put on hold again as chemo has been delayed so instead of moving forward and getting to end of this awful journey have now been hauled back. Sorry to still be ranting but just so annoyed and really do wonder if i have enough confidence in staff to warrant having final chemos
HI Mounties
I think unless the chemo is becoming too toxic, then the best thing is to have the full course. In anger, you are wanting to forget about it - which is perfectly understandable. But don’t let that blind you so much you that don’t have the optimal treatment, which means completing all the CMF.
They can’t really cover their backs as the schedule was so obviously wrong. Sounds like there are a lot of changes that need to be made at this chemo unit, this could well be the spark needed to do that.
Rant away hun, you need to get this off your chest - but don’t let it stop you getting the final chemo.
Fuschia
xxxxx
Hi Mounties you really didnt need this and I think a formal complaint is appropriate.However you would[I think]know by now if any harm had been done and you must not compromise your chances of recovery by refusing last treatments.After its all over cotact your hospital trust their incompetence cant be ignored but ultimately your onc must have known.lol Valxx
Hi Mounties,
Put in a formal complaint. Ask for a full explanation from the trust and meet with your oncologist to discuss whether there will be any short or long term effects of having too much chemotherapy. Ask whether the same mistake has been happening to other people too.
With best wishes,
Sue
hi mounties have just read your post I am so sorry for you this id bloddy terrible for you. What a mess they deserve a letter of complaint and make sure you give it to someone who seems to be of importance ok. I had my 4 epi one every 3 weeks then my 3 cmf one to go next wednesday I got a card here in Scotland on my 1st visit for my 1st epi with all the dates on it right up until next wednesday. I was also given a separate appointment card for the same date next wednesday to see the onc. I see her at 9-50 then my last cmf at 11am. At least then I could plan everything around all my treatments. I know reading this wont make you feel any better but it just goes to show how bad you have been treated. I do feel for you so much but please dont even think of cancelling any of your treatment you have come so far think of all them aches and pains you have been through just do as you said and everyone else has said on here put in that complaint.I dont know what else to say to you as nothing at the moment will make you feel any better. I am thinking about you so please take care Lots Of Love Linda xxx I will be in touch soon
Hi Mounties
I am so sorry to hear about your troubles. My advice would be to get an appointment with your oncologist and the sooner the better. See what he/she has to say about the mix-up. CMF Chemotherapy can be given in different ways. There are four different schedules for giving CMF - Schedule A, B, C and D. I was told different hospitals sign up for different schedules. I would give them a chance to explain exactly what should have happened before lodging a formal complaint.
Good luck.
Jeannie
Thank you all for your replies, it is so good to have support from the real experts who have been through it. Since posting yesterday had a phone call from ward sister who is equally as disgusted as i am about the way i have been treated. She is going to meet me when i attend for next chemo this fri to get all the facts down and do a full investigation. She agreed that too many cock ups have happened with my care and even though they have had meetings to reiterate the importance of getting the nursing staff to be consistent when they make my follow on appts this hasn’t happened. As i said to her i just want to ensure no one else has to go through the extra stress that i have had to with all the confusion. Linbob, i think you are very lucky to have the care the and consistency you have recieved i do think leicester is the forgotten city when it came to handing out brain cells and i have just been very unlucky, so i will go ahead with final chhemos though i will feel very nervous as to whether they do actually know what they are doing, but i certainly won’t be taking in chocs and a thank you card on my last appt.Will keep you all posted on how things go with meeting next friday, i am not letting this go till i get a full explanation and apology
Hi mounties I did send you my email but they took it off and sent me a message saying I wasent allowed to send it to you. I wish you were here with me so you could have the treatment I am receiving its not fair reading some of the srories on here its terrible. know I miss Birmingham but I am now glad I am having my treatment here because I am being treated as a person not a number As its my last one on Wednesday they even booked me in for the onc an hour before my chemo so I dont have to go twice. I have got the card and the chocs already for the nurses which have been fantastic. I can honestly say I have not had one complaint I havent even been kept waiting in fact they are ther waiting already for me in fact I have even got my own chair.I am starting to settle in here a bit better now met lots of friends here the Scots are very friendly people they cant do enough for you. My son is coming next month from Birmingham for a week so I am looking forward to that.I will work something out that I can get in touch with you anyway I will let you know how I get on on Wednesday after I have been to the hospital You keep your spirits up I know its easier said than done Take Care Linda xxxx
Hi
I had e-cmf last year, had the epi every three weeks then had the cmf day 1 and 8 then two weeks off then day 1 and 8, this was the normal regime in my hospital…Jax