Hi,
I started the FEC-T regime in June. With the first FEC I had an immediate reaction to the dexamethasone (steroid) IV they gave me. My face began twitching and puffing and my right leg and ankle muscles began jerking. From this the doctors decided I couldn’t have anymore steroids either in IV or with the sickness meds. I went home and was horribly sick for 4 days with my husband having to call the hospital to see what else I could take. 10 days later I developed a temperature along with other side effects and was hospitalised with Neutropenic Sepsis for 4 days on IV antibiotics. After a dose reduction the next two were marginally better and the doctors agreed to me having the dex very slowly through saline but only in IV under supervision. I still had the same symptons.
At no 4 the doctors decided i couldn’t have the ‘T’ due to the steroids and switched me to FEC 75 with no IV steroids. I was horribly sick again for 4 days. Worse than the first time. After 7 days I developed severe tongue and mouth pain so had to go back to the hospital. The consultant has now said he feels that perhaps there is no point in me continuing with 5 & 6. He says I have had all the anti sickness they can give me and can do nothing for my tongue and mouth problems. My tumour was only 1.5 but the cancer had got to one lymph node. It is grade 2 and I am HER 2 negative. I am now torn between trying to continue or stopping due to all the problems it has been giving me. Did anyone else stop at 4? I have an underlying undiagnosed neurological problem that the dex highlighted but I don’t want the cancer back. I just feel torn.
DottyJ
I am so sorry to hear that you are having such a bad time with the chemo. I can’t advise whether it is worthwhile carrying on or not, only you and your medical team can decide that.
I am picking up on what you say about having had all the anti-sickness medication you can. When I had chemo my biggest fear was being sick and my onc told me she would guarantee no sickness. She gave me six different kinds, the strongest being Emend. I have since found out that this is the most expensive anti-sickness drug on the market and is not always available on the NHS. Have you tried this. It is one big capsule an hour before chemo, and then a further one on day 2 and 3. I took this along with all the other standard anti-sickness, and didn’t even feel nauseaous or sick once.
It might be something to ask your onc, just to make sure that you have had everything possible.
Sam
sorry sorry to hear that FEC-T has been so awful for you. 
Have your medical team mentioned immune boosting injections. they would keep your neutrophils to a reasonable level should you decide to carry on with chemo. On the othe hand they can give people back and leg pain. I found one brand easier than another. It might be one to discuss with your team, in terms of pros and cons.
Hello Dotty Your situation sounds very similar to mine ie. tumour and in no. 1 lymph node. I was also planned for 6 sessions of chemo however on no. 4 chemo had a very, very bad allergic reaction ie. throat swelling, face swolllen etc. etc. The Oncologist decided after consultation that it was too risky to carry on. Also in America they normally only give 4 sessions and there is an argument 6 against 4 sessions. So I think upon it, as the fact that only no. 1 lymph node was affected (there are 20 in total) and it was not a large tumour that the chances of it escaping into the rest of the body are very, very slim plus the 4 chemo sessions have done their stuff anyway. If the Oncologist say it is okay to stop at No. 4 then I would listen to them - they would not do otherwise. Hope you are feeling better very soon and remember that the medical team will be reviewing you from now on. I am nearing the completion of my radiotherapy - I have only 3 more sessions to go and then the treatment is finished. I am feeling really good today.
Dotty, it sounds as though you have had a horrendous time on chemo. I think you have done really well to get to 4.
I have the same dilemma. No answer though. I have done 5 cycles of docetaxol/carboplatin and not sure whether to have 6. My onc suggested we stop after 4 when I complained of severe neuropathy but I wanted to go ahead with cycle 5. This one turned out to be really tough (pins and needles all over, numbness and ringing in ears) although nowehere near the SE’s you have experienced.
My dilemma is this- this is my 2nd b/c. I had 4 fec and 4 tax for my first b/c in 2009. This time the tumour was small 1.5 cms, and I had one node involved but it was triple neg. and grade 3 (both times). My onc is open about his concern about the amount of chemo I have had (been on chemo for 10 months in 3 years!) and says there is no evidence to suggest whether 4 or 6 is enough.
Like you want the cancer to be zapped, but I am scared of the chemo, long-term SE’s. I know if I go in and say it was awful, onc will stay stop. My friends/family say, its only ‘one more’ but that just to goes to show they have no idea just how horrible it has been! I also had a 6 week break already as I had to have an emergency op. which I was told may have undermined the efficacy of the chemo anyway.
I have cried over this, and what to do. Like you, feel very torn.
I am very interested to know more about the 4/6 debate. Does anyone have any more info.?
Rattles
Sounds like you’ve had an awful time of it. As Campo said, there are trials and a school of thought that 4 chemo sessions is enough and just as effective as 6. However, there is also an ongoing trial for 6 months v 1 year of Herceptin and I had mine stopped after 6 months for health reasons as my heart function fell dangerously low and I was really scared and upset that I couldn’t finish the full course. Even though there are trials going on I was still worried as there’s obviously no proof yet that 6 months is as effective as 1 year. However, there’s no point in curing us of cancand but causing other serious health problems as a result.
Emend was also my most effective anti-sickness drug so if you haven’t had it before and are determined to have the final 2 sessions, then it might be worth a go. I’d have a frank conversation with your onc about your fears of stopping and also of carrying on. You’ll know when you’ve made the right decision for you as you’ll feel at peace with the decision.
Good luck. X
Hi
I wrote a long post to this and my Pc decided to crash!!! Short note, ask for Emend, also known as Aprepitant, I had this all the way through chemo as I was hospitalised the first time after spending three days at home being sick. Idon’t know how widely available it is on the NHS but I live in the NWest and was given it even with Tax, my onc said that I needed it and after the first one I wasn’t going to argue. I only learnt afterwards its v expensive but who cares as long as it works! M
Hello Ladies, Sorry for the delay in replying. I had the following sickness meds, Emend (aprepitant) for three days, maximum doses of ondansetron and domperidine and then to top it of a tablet called Nosinan which you can only take a quarter of a tablet at a time.
I have been to see the consultant this afternoon and he explained that they didn’t want me to continue. He said there were no studies to show that 6 was better than 4 and in my case my bloods show that the chemo is staying in my system much longer as my body is not metabolising it very well. He said that they were concerned that my bloods were so low that they could make me seriously ill. He said they could give me GCSF to boost the immune system but the sickness and the tongue pain on top of this was too much. Too be honest when he told me that they felt it was enough that was a great relief.
He has said that I must have the Tamoxifen and the radio once I was feeling a bit better but i do not feel torn now just very relieved as I would have had to go back for more next Tuesday.
thankyou for your kind words ladies it is so nice to have this support from people who know how it feels. Good luck wth the rest of your radio campo. Rattles good luck with whatever you decide. But from what my onc said today there is no proof positive that 4 or 5 is not as beneficial as 6.
DottyJ