I know that people here have been given one or the other for the same thing, and I can't seem to find anything online showing guidance for it. I've looked at the NICE guidelines, and there's no mention of number of cycles or whethjer or not to add the 'F'. The only thing they recommend is offering weekly Paclitacel (best case), fortnightly Paclitaxel (second best case) and lastly Doclitaxel every 2 or 3 weeks asit has the highest incidence of peripheral neuropathy.
I've just had my 3rd EC and each time it's worse. I don't want to challenge my lovely oncologist, but wondered why are the two regimes being given up and down the country? Is it due to cost/number of chemo paitients at any time exceeding place/because it's just as good in a lot of cases? I've seen people with bigger tumours and in more nodes only having 3, so it can't exclusively be individual circumstance....EC carries a 1% risk of leukemia and heart damage, and I'd have thought that the smaller amount given the less likely this would be. As Chemo only adds 4% to my 10 year survival anyway it's a lot of medication!. Most other drug regimes are fairly standard (e.g. for HER2+), but this one doesn't seem to be standardised. At least I don't have F in EC! (sorry but the last sentence made me laugh when I said it quickly!
Hello,
I don't know if this helps explain the current differences around the country but when I had problems with the 2nd dose of Taxotere.. ..we had a long conversation with the oncologist regarding the strength of the drugs. He told us that actually there isn't an actual series of doses which will guarantee the cancer shrinks or stays away. It was, in early 2016,generally accepted among oncologists that six sessions( 3x FEC, 3xt) showed the best optimum results. But they didn't have a set formula to validate that.They were actually just beginning to consider dropping the F drug as it probably had the harshest symptoms and wasn't particularly showing any specific advantage. He said that had my peripheral neuropathy been noticed during the first session.......( the oncologist was on holiday and I was seen by a locum. I had had some symptoms but they were easing and I didn't mention them because I wasn't asked.)......they could have reduced the percentage of T therefore it's strength and I could have had 4 instead of 3 doses . As the damage had already been done, he decided to stop the chemo and move me to radiotherapy ( 33 doses) We asked would this have any long term effect and he told us that whilst six is general, if it's coming back it wouldn't matter if you have eight or one dose because they can't actually control where a recurrance happens.
I think during the last three years there have been developments to make the drugs kinder. But each oncologist can decide with his team which treatment pattern he favours for each individual. Some may op for a longer protocol with slightly lower doses. Others might feel that the shorter, stronger zapping is better. I suspect more is known about individual tumours as scanning techniques have progressed.Tumour size and node involvement effect treatments.Some situations obviously suit removing the tumour first others attempting to reduce it's size.
When my grandmother had bc in the early 1970's she could only have a mastectomy. Chemo didn't exist and I'm not sure if she had radiotherapy. But she didn't have a choice. The mastectomy was the only option. She was lucky. It worked for her. She died in her 80's from something non related to cancer. But today there are so many individual approaches to treatment. Which brings us back to the original question........why are there so many variants in protocol nowadays? There must be as many answers as the variants.....individual needs, oncologists preference, advancement in medical research, location, guesswork,....... being a few.
Londonlass ....I know the thought of the T is terrifying you because you aren't certain it's worth the risk. It's unfortunate you have been having your chemo at the same time that one or two people have experienced problems with peripheral neuropathy. Certainly it isn't a kind side effect but it really only does effect a few people. There are so many people who had no problem at all with the drug. However, I think you do need to discuss your fears with your oncologist. It might be possible to extend your sessions or at least he can put your mind at rest by telling you what to look out for.
For myself.......it was a difficult year and yes, I have a few ongoing problems but I don't have cancer and I have a life to look forward too. We will never know if it was worth the risk or if I would be in the same situation with no treatment but I suspect I might not.
I hope you don't have too many problems over the next few days as you get over EC number 3 but even if it's awful, it will pass and you are recovering.
Take care.
Love Karen
Hiya Londonmumof2 and
There are a lot of variables for chemo drug combinations to treat BC. FEC-T EC-T AC-T and weekly Paclitaxel instead of Docetaxel etc
Those diagnosed at a younger age tend to get everything thrown at them to help avoid reccurence as those with BC who are younger tend to have more aggressive types of BC like triple neg. This could mean 4 cycles of each at full strength - other options for having 8 cycles are being given a lower dosage of EC-T but over a longer period of time.
Having said that 6 cycles is still the 'norm' More oncology units are dropping the F part (fluorouracil) from FEC as trials have shown that the F (5fu) with EC has minimal added benefit compared to the increased risk of side effects.
Add to that the oncologists preferences and differing health authority protocols (within NICE guidelines) no wonder there is so much variation and confusion If only they explained all this to the person who matters in all this eh ?
Take care, G n' J
Yeah! Basically what Lacomtekp Karen just said
Sorry I put Londonlass in my 'essay' but I meant Londonmumof
2.
Well I'm having full dose EC x 4 followed by full dose Paclitaxel x4, with 4% gain, my surgeon told me it was all gone in his opinion as clear margins, no LVI and only one node out of all three levels, my armpit zapped with TARGIT radiation and he thought that I was extremely unlikely to get it again in the future. My oncologist thought that I was a good candidate for the Optima trial, and the chemo only adds 4% to my statistical life expectancy in 10 years, and I'm 59 and ER8/8, PR8/8 HER2 -ve. so why the full -on chemo? I did speak to her last week and mentioned that the T only adds 1.4% to my 10 year stats, and she said she wouldn't initially drop the dose if I decided to go ahead with it. I'm now thinking about asking her her if I could have it weekly, as the side effects are not as bad that way, and if I react it will be to a lower dose. I want to do everything I can to make sure, but it's hard when on paper it seems such a small difference for possibly life-long side effects. My other worry is if I drop the T element that she'll want me to have another 2 rounds of EC, which damage my heart and carries a risk of future leukaemia....oh what fun, and in my day 2 chemo gloom the now looming shortage of decent Letrozole come the end of the year when I start to take it.
Hi
Rant away It's good to get things off your chest (er' sorry that phrase sounds so wrong)
In the years we have been kicking about here the only benefits I have noticed between private and nhs seems to be the speed of getting initial scans / biopsies and results through and no treatment queues to join.
Seems a lot of private patients find they are not covered for, or have to fight for any bolt-ons / aftercare that are so readily available to most nhs patients.
Hugs, G n' J
I was told that the clearance was a better option because the initial scan appeared clear and wasn't, and I felt I'd worry about the rads not mopping up any others, and didn't want the extra external radiation which could damage me after a full body nuclear bone scan, body and chest ct scans.I was worried about lymphoedema and reduced mobility, but my arm movement is 'excellent', and no swelling so far apart from the current chemo-induced one. My Macmillan nurse phoned me a couple of days before the surgery, presumably aftet I was discussed in team meeting, and asked if I was opposed to radiation on my nodes. I thought it was an odd question, as I'd initially suggested it, so said no, and explained I'd initially suggested it because it might have a lower risk of complications. The first I knew about the intra operative radiation was when I saw my report, and was actually pleased and surprised as there is nothing on the internet about this being done (but it is lower dose and less damaging), though the man who invented it works with my surgeon at my hospital and UCH I was also surprised I'd level III clearance, which is not usually done. He'd gone for bell's and whistles surgery to get the critters out, and ironically it was already clear!
Hi your experience sounds very different from mine, as a private patient. I’ve had huge amounts of support and would say I’ve had additional aftercare, particularly physio which has been critical for me. I suspect that there is huge variation in both private and NHS care - it’s a lottery either way!
I was diagnosed with Triple Negative April 2018 aged 51. I had 4 x Docetaxel (tumour was 2.7cm, shrunk to 1.2cm). I then had 4 x FEC ( tumour had gone after the 3rd FEC).
My first 7 chemos were done at full strength and my last reduced by 20%.
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