I’ve just been informed that I’m going to require chemo and I’ll be seeing my onologist for the first time next week.
My nurse has told me I’ll be offered second generation or third generation and it will be up to me to decide which to have. The only info I have at the moment is that the third generation will give me a slightly higher life expectancy percentage but the side effects are worse. Is there anyone willing to share their experience as I’m feeling a bit lost and rather scared?
She also mentioned about the cold scalp cap before treatment - again I know nothing so any stories would help.
I had fec, which is second generation, and then taxotrte, which is third generation. The side effects were different for both and, even though tax was probably a little harsher on my body, if my onc said I needed just one more Chemo , I would choose tax as the sickness on fec for me was worse than the side effects of tax. Different people find different ones harder, I would go for the one with the best percentage survival one if I was uou, though I bet your onc chooses anyway!!! Good luck, you can do it if I can!
Oh, cold cap wasn’t for me, drove me a bit mad do
only used it once. Other ladies have had success tho. Xxx
Sorry, I have no idea what second or third generation chemo means.
I had Taxotere in 2008 and used the cold cap. Horrible while it was on, excruciating in fact, but as soon as I pulled it off after each treatment I was pleased I’d opted to try it rather than definitely lose my hair. And I did keep my hair, didn’t even thin.
The Taxotere was doable. It didn’t make me nauseous like a previous chemo combo had done in 2003, but I did find that the side effects lasted longer with Taxotere. With the other chemo (sorry, too long ago to remember what it was), I was ill for about 5 days and then woke up the next morning feeling like I’d just got over a bad hangover. With Taxotere the side effects weren’t so severe, but there were more of them and they lasted longer each cycle so that I never really had a chance to recover from one cycle before the next one began. It took a good year and a half for my nails to recover properly (although I did’t actually lose them like I know some ladies did).
I really hope you get a range of responses to help you feel more informed. The Macmillan website is very good for going through the different chemotherapy drugs to help you become more familiar with them. You have not said why you need chemo. This information could also effect the choice between second and third gen chemos. For example I think if you had many nodes involved you would be more inclined to take the third gen chemo as you may get a greater percentage gain.
My BCN told me that onc try to match chemo to each individual based on age, general well being , likelihood of recurrence, etc along with grade, type and node involvement. She said they did not want to give you too strong a chemo if it would made you too unwell if it was not necessary. Especially if the percentage gain from chemo was small. However the aim was to prevent recurrence. She did also say though that if there was a really high chance of recurrence they sometimes liked to have kept a chemo back that could be used later.
I had 3 fec and 3 tax, fec is second and tax is third. I personally found fec worse than tax, because I felt very sick
and never found any meeds that got rid if this. BUT this is unusual and most people do find things to help them and find fec manageable. I was able to find things that helped me with tax and although the side effects could be grim, they did not last long. Chemo and the effect it has on you is very individual and no one can predict how you
will react.
I hope your onc helps you carefully weigh up the pros and cons. There is a third gen chemo called abraxane which is supposed to be v expensive but have fewer side effects than taxotere. It may be worth asking about it as an option.
As for cold cap, my onc does not recommend it. I finally asked a chemo nurse on my last chemo why she doesn’t like it. She said it was because she has been an onc for many years and in that time has seen over 200 cases of scalp metastises. On the other hand I know that other onc s are happy to do it.
Thanks for your informative and quick replies. I’ve just been reading the forum section relating to sex after chemo - this whole process really does seem to take the joy out of life!!
Hi Reeb
My onc gave me the choice of 2nd only or 2nd and third. He went through all the side effects of each and also gave me all the stats. For me this was an increase of 30% with 2nd, rads and tamoxifen which was strongly recommended, but the third gen. only added 1.5% so the decision was left to me. As the side effects were harsher I decided not to have tax as well and my onc. seemed happy with my choice. I felt if he thought I needed this as well he would have not left the decision to me,
Hope this helps,
Ali.
x
As well as the information and support you are receiving from the other users you may find it useful to read the BCC booklet ‘chemotherapy for brest cancer’ It explains what chemotherapy is, how it works, and the benefits that may be gained from it. If you would like a copy or to read this on line just follow the link below:- breastcancercare.org.uk/upload/pdf/BCC_booklet_Chemotherapy.pdf
hi i had five lots of fec and found them doable. i was given a mixture of antisickness which worked and i was never sick. The worst side effect was a sore mouth and ulcers but by using corsadyl mouse wash and a paste for the ulcers managed to cope with that. a couple of toe nails went black and my hair came out, everbody fears that but believe me it is not as bad as you imagine. i had two great wigs which i got endless compliments on , my family got used to seeing me bald and i found it very comfortable. when it stated growing back and i had i spikey style i went with out wigs altogether, the only thing was i got a shock everytime i looked in the mirror. The thirdv day after was the worst and i usually stayed in bed that day. I was paronoid with the infection thing , used my own cutlery, cups plates etc. my own towel and for a few days didnt encourage anyone to visit me.So i got through ok so dont be too afraid it can be done
I wasn’t given any choice by my onc and at that time didn’t know about 2nd and 3rd generation so didn’t question him about it.
I had 3 FEC and found it no problem: the 3 xTax that followed was quite unpleasant and it does take it out of you for some time afterwards- but they say the nastiest medecine does the most good!
. Good luck anyway: the best thing about Chemotherapy is looking forward to it being over!
I was dx in April 2008 and had 4 x FEC followed by 4 x Tax. I was not aware at the time of any differences in “generations” and just trusted the onc and his decisions. THe side effects were worse with the FEC (more sickness and quick hairloss) and although still horrid with the tax, I did feel less sick and my hair actually started to grow back during this!!? God knows why?.
I did not use the cold cap, only because it added quite a few hours to my treatment time and I had a 5 and 6 year old at the time. I felt the more time I spent at home the better. I lost my hair within 2 weeks of the first FEC and spent the winter wearing hats (the wig was itchy) but it has now grown back and is thicker than before!
My advice is to take it one day at a time. After your first treatment, monitor how you are feeling and you may find that you can get medicines ready for 2nd one and catch side effects before they happen…for example, with the Tax I had awful mouth ulcers first time so when I had the 2nd tax I used a mouthwash and some liquid stuff (sorry cant remember what it was called) to nip it in the bud and it did help. Obviously this doesnt happen with all side effects but you can combat some of them.
Good luck with your treatment…I am 18 months on now from finishing chemo and radiotherapy and hopefully this will give you some confidence that there is life after BC…
Take care…Hayley x
The rates of scalp mets your nurse quoted (200 cases) seems rather high. The link below is to research which suggests it is quite a low risk, I think 9 cases in 2,500 patients. Even so, it is a concern. This research seems to suggest that the effect of the cold cap in preventing hair loss is metabolic, rather than working by restricting blood flow (and therefore chemo)to the scalp.
Am not sure how reliable her statistic was. She did quote me q percentage too, but can’t recall it. I will however ask my onc herself the next time I see her to clarify things. She is a very experienced onc, not far off retirement and I know she does not advocate scalp cooling, but was the chemo nurse not her who gave me the statistic. I will let you know what I find out. Debx
Thanks so much for all your comments. I’ve just been to see my surgeon - there is going to be a delay of a week or so before I start chemo because of the swelling from the node clearance - he took off another 400mls today and they won’t start chemo until they decide to stop draining. As such I’m not seeing my onc until next Thursday now. The results of the node clearance showed cancer in more nodes so the surgeon thinks they may offer a mixture of second and third generation (3 of each). Thanks again
Reeb
Hi everyone, I have just returned from my appointment with the Oncologist and when discussing treatment for lobular cancer, (I had a WLE with sentinel node biopsy and a month later as one of the seninel nodes was infected, I had to go back to hospital for a lymph node clearance and thankfully all the lymph nodes were clear, but the Oncologist has offered me chemo, 6 sessions, 3 of fex and 3 of the other, followed by radiotherapy and hormone thereapy. But of course, the Oncologist says, it is your decision whether to have it or not. The percentage benefits were 5.6% and this is apparently one of the reasons I was offered chemothereapy along with the fact that my general health prior to the lump was good but for me it is a difficult decision. I don’t want to take a chance on just radiotherapy and hormone thereapy if taking chemothereapy will boost non recurrance and get rid of any stray cells and would love to hear from anyone currently making the same choices. Thank you so much for listening, Elizabeth x
Before I was at the point when chemo was something that may or may not be offered this was my thinking.
I felt I wanted to have everything possible as mentally I felt I wanted to know I’d had everything on offer and I’d trust the specialists. If they said I wouldn’t need chemo that would be great but if it was my choice I’d take it as I thought I’d just spend my time after treatment thinking what if…I suppose it was a belt, braces, elastic and anything else attitude.
Now I haven’t got a choice, having chemo is a certainty and although I’ve been told I’ll have the choice of the type of drugs I think it will be a case of the magician’s trick of ‘take a card any card but it will be the one I want you have’ and I’ll trust their experience. I’ll certainly read up about it so I’m informed but I still think they’ll know better than me.
The one thing I have come to realise is that having BC treatment is a long haul. I thought it would get sorted out quickly and it wouldn’t be long before life was back the way it was before and although everything is going as quick as possible it takes time. I’ve just been given a sick note for 4 months (I’m a headteacher at a primary school and they don’t want me anywhere near children with winter colds etc) which seems a hell of a time yet it won’t even cover my chemo treatment!
I needed to look at the long term and hope once all the treatments had been given I’ve given myself the best chance possible. My Breast Cancer Nurse went through my ten year life percentage chances which was a bit of a kick in the guts but it certainly made it very plain and as far as I was concerned every percentage point counts.
Sorry if this has been rather rambling but I hope it’s useful.