AWAKE.........

Night night fruit loops, sleep well

sleepy fairy dust in plenty to help yourself.....

hugs xxx

, so sorry you have been so badly treated byyour hosp. No wonder you are upset. I cannot really advise but sill tag and Londonmumof2, who are well up with statistics and may be able to help xx

Am I just feeling sorry for myself, behaving like a spoiled brat, losing perspective. I'm afraid now that I'll get the worst  of both world's - that the oncologist will call me at home tomorrow , and I'll be too upset to have a phone conversation and/or not ask the right questions, and that he'll expect me to cancel the consultation for Monday because we've already spoken.

Noghtmare evening! DH had his appt re poss skin cancer. Appt 6.20, arrived 7.50 due to a humoungus traffic jam. We had to stop off for a loo visit (like you LondonLass I need to map toilets everywhere I go) which did not help. Lovely consultant saw him though. Everyone was late. It is likely to be Bowens, which is precancerous. Biopsy soon then await results. Relieved ++ Strange to see the same consultant that I saw last week!

Love to all fruitloops xxxx

Hmmm....

I put your data into Predict, and the 10 year benefit of 3rd generation chemo Is almost 6%.. National guidelines say  1-3% is no benefit against risk,  3-5% is a gray area, and over 5% is benefit. They also say that TN should generally be treated with chemo . . Your oncologist is suggesting the harder options for chemo with FEC (our hospital uses  EC as it's still tough  but less so) and I'm guessing the T is Docetaxel (my onco usually gives Paclitacel, often weekly is the 'gentlest' T). 

Is a tough one,  and a choice only you can make.  I can say that my oncologist did push me to have it with a 4% gain,  and 5-10 years of Letrozole as mine was Er+ and PR+ 8/8. She said that I could do chrmo and it could still come back as someone is always the small unlucky group of women,  or I could refuse and might be fine.  No one can tell, but she follows guidelines in the hope the treatment does its job.  It isn't easy to do.  Maybe take a look at the Chemo thread, but thr nurses are lovely, the support is there,  and it passes quicker than I thought it would.  I cold capped so have some hair,  and my eyebrows are nearly back too.

Would you consider a second opinion from another oncologist? They might have a different take on it.  Good luck and let us know what you decide.

Thanks so much LondonMumof2. 

I've gone over and over the PREDICT prints (both the info from the printout and the technical development stuff). So I'd worked out that the intention of the developers was that over 5% benefit would normally indicate a recommendation for chemo (all other things being equal). And I *Think* that's what I would like to do. But I don't understand first of all why the oncologist didn't gently guide me that way if the benefit stats for me were 5.5%. Secondly,  I don't understand why he would suggest FEC /FECT rather than EC/ECT.  I found a June 2019 paper from the ESMO Annals of Oncology (The European equivalent of NICE guidelines??)  which states 'There is no place for routine use of 6 cycles of 3-drug anthracyclic -based regimes except in patients with strong contraindications to taxanes. Randomised phase III data have shown that 5-FU can be dropped from anthracycline based regimes because it does not add efficacy and it increases toxicity'.  So I assume that means 6 cycle FEC is moving out of favour). But does that also means that the 3 + 3 regime of anthracylines and Taxanes should be without  5FU also.  Do I have any say in the regime chosen  

Also  he did not mention biSphosphonates - that would add another 1.8% to the benefits. Would I be allowed them (i'm 66!!)  

And lastly, my big fear is neuropathy. I am a crafter and can't imagine a life where I couldn't carry on doing that pain-free. I I've read that neuropathy is more likely with the cumulative effects of many Paclitacel doses than it is with the 3 weekly Doxa..... option (though I realise that the latter is harder to tolerate in other ways). 

I expected the oncologist (MY oncologist) to guide me through the decision making process- but it seems  like he expects me to do it on my own. Is this usual? 

I don;t really feel the need for a second opinion (I haven't had a first opinion yet!) But maybe I feel like I want  a different oncologist. 

Should I tell him how I felt after the consultation - or is that just going to affect the relationship with someone who may be treating me for 9 months? 

I don't know what's reasonable to feel/ say feel and what's not. 

Morning Val  /  

Your oncologist sounds a bit of a Cockwomble for getting back to people...

Triple Negative ladies are nearly always given chemo either before or after surgery; main reason for this is because TN has a higher % of recurring within the first 5 years and there are no follow up meds apart from radiotherapy to reduce this risk like there is for any of the + positive types. Mostly those who are not offered chemo with TN is because they have other health issues that make chemotherapy too risky or are frail.

A lot of oncology units have dropped the F part of FEC and now mostly offer all EC or EC with either Docetaxel or Paclitaxel the latter being kinder re side effects.  Why in their head they left the decision down to you is beyond me Chemo with TN is considered the standard treatment :-?

You could check with your hospitals P.A.L.S. (patient liaison service) to see it they have more than one oncologist you could meet and have a chat with ? 

Neuropathy is an issue with breast cancer chemo and is mostly caused by the Taxanes (docetaxel / paclitaxel) some have this side effect some don't - those who get this find it eases off post chemo but for some it can become more permanent residual numbness. J had 3 x Fec and 3 x Docetaxel in 2012 and still has slightly numb big toes but her hands and everywhere else is fine.

I'm not into sugar coating 'stuff' really, so I'll just put this out there.... With TN it's not just the higher  risk of recurrence you have to consider lowering the risks of getting secondary BC in the future when making this chemo decision. If this was me I would firstly opt for having the chemo then decide whether to include a taxane in conjunction with it ? The most effective option would be to include a taxane but only you can weigh up your odds to make that decision.

Hope this helps a bit, G n' J

Good morning , I was worried about the PN, and asked my oncologist to swtch from 4 x fortnightly Paclitacel to the weekly regime. It's normally given weekly to women with HER2+ so it can match the three weekly herceptin doses,  but she did it for me anyway.  I'm so glad that she did,  as the first dose gave me wobbly legs and hips.  I started to recover towards the end of the week and delayed the second dose a few days to be sure it was ok before getting to seven and stopping as I was getting grade 1 (out off 3 grades) PN, with pain in my feet and dropping things. If the first dose was the higher fortnightly one I might not have risked any more ad thr side effects would hange been worse. In the end I had 4 x EC and 7 x Paclitacel.  The Paclitaxel added 1.2% on top of the EC (and think that must be significantly reduced by thr 7), and my oncologist considers me slightly under treated  as didn't make it to 9! I think that she is very thorough and treats aggressively to try and cure in the beginning. My benefit from thr Biophosphate is 1%, and I'm also having that, as the percentages all add up. I convinced myself to do it by working out how many times my chance of death in 10 years fitted into a hundred.  In my case the figures were 11 and 17, so 1/11 or 1/17 chance at 10 years  and I know which I preferred!

It's important that you respect your oncologists judgement and can express your worries and feelings,  and that's not happening if they are unobtainable.  They are all really busy,  but I could get messages to mine through the Macmillan nurse within a day or two, and the hospital pharmacist who gave me her number and called me at home a few days into each EC.

Thank you Dreamthief. 

Your advice about starting the chemo and then making the taxane decision was one I hadn't considered. So  does that mean that the dosage of chemo cocktail I would have in the initial 3 cycles would be the same regardless of which of the  2 regimes I was one (FEC or FECT)?

Thank you so much for your help. 

Hi Val  / 

There are so many variations...Even the dose levels of each can be tweaked.

You would have to decide/agree the full chemo regime prior to starting I think your oncologist wouldn't be in agreement with just starting the EC then deciding about the taxane. Although you don't seem to have got onto a good start with them see what they have to say about your choice and be guided by their experience. The lack of contact doesn't mean they are not great oncologists 

Mostly the EC or FEC part is first, but not always. They can advise you have the taxane first but that scenario is more common if chemo is neoadjuvant (prior to surgery)

Paclitaxel weekly or fortnightly seems to be tolerated better than the bigger hit of Docetaxel 3 weekly but both are quite powerful chemo drugs.

Whichever regime is given first it is more common to have the full dose, then reduce for the next session if necessary. They don't usually reduce Paclitaxel as it is a lower strength/dose level to start with. If that proves to give you issues they may stop the paclitaxel sessions earlier, or switch back to EC

Problem with the taxanes is peripheral neuropathy can commence a couple of months post chemo :-/

It's a bit of a minefield to get your head around 

G n' J