Hi all i had my first chemo 4 weeks ago next Tuesday. After 6 hours of the first one i was so violoently ill iwas in hospital 2 days.
Then last weekend again for 4 days with neutropenia. The 2nd dose had to be delayed one week because of this.
Some Drs say that the dose of chemo may be reduced becuase of this.
I have now read that this reduces the effectiveness and survival rates if the dose is delayed or reduced.
Chemo only improved my chances by 3-5% at most and i am now worrying i made the wrong decision to have it.
Has anyone any knowledge or help/ insight to this
I am so depressed about it all. I just dont know what to do.
My family really wanted me to have the chemo to have very chance of fighting this tooth and nail but i feel if it is not as effective am i putting myself at risk i.e neutropenia and such like for very little benefit
Holly, I was also violently ill after my first FEC and spent 2 days in hospital. Fortunately my onc changed my anti-sickness meds and I was put on Emend, which made the world of difference. I didn’t throw up ONCE for all of the following 5 cycles.
I was lucky not to get neutropenia, but they do prescribe bone-marrow-boosting injections to help with that one, and they’ll keep a close eye on you.
There are plenty of people on here whose dose is reduced to 75% or even 60%, at the advice of their onc. Chemo IS a poison and there’s no point in them killing off the patients before the chemo can kill off the cancer!
It’s not uncommon for chemo to be delayed by a week on every round. As I understand it (but I could be wrong) they try to schedule 3-weekly sessions to get it over and done with in a reasonable time, rather than because it reduces efficacy if delayed by a week.
For many, the important statistic is not survival, but recurrence. I read on a thread this weekend that someone’s survival stats were improved by just a couple of percent, but by 20-something percent when looking at recurrence. None of us wants to go through this again, so that might be something to consider. It might be something to discuss with your onc, as they’ll be able to give you your personalised stats, whereas we can only give our own experiences.
I think you could do with booking to see your onc and talk it over with him/her, so you have the best information on which to base your decision. It has to be your decision, but you need to make it from an informed position, so get onto your clinic or BCN to get that appointment booked.
You have clearly had a rough ride so early on in your chemo treatment which is pants.
Any decision to continue or not can only be yours…tough or what…there is no right or wrong…only what what your body and mind is able to cope with.
I was borderline chemo/no chemo so had to choose. I am needle and blood phobic so everything emotional screamed no. On the flip side I am also Mrs Pragmatic/Practical and so I took the view that I wanted to throw everything I could into this. I was fortunate that my body coped pretty well and I only had one stay in hospital over Easter in 2011 with high temp/infection.
Take the views of your medical team, family, friends, this forum and find a way through it all is right for you. I hope that your SE’s ease and your decision is eased,
Sx
Think submitted at the same time as CM - she always has wise words
Thanks so much CM for responding your comments have helped me. i am seeing ONC on tuesday before chemo. It sounds very vain but my hair falling out has devastated me and i am thinking has my hair fallen out for nothing.
I know it devastates everyone; but it was my husbands favourite part of me and it has really effected me. I feel he doesn’t find me attractive any more.
I thought i was getting to grips with my emotions but i am all over the place again. we only married last august what a horrible first year of marriage for him too. I was a very fit active triathlete before all this and ive been so ill i cant imagine cycling running or swimming again!
Thanks MFB i was the same borderline and had to choose; which made it so hard and hence now wondering if i have done the right thing. I think i will do no 2 and see what happens this time and hope i have a btter time; but i will speak with onc regarding concerns about lessen the effect. Thanks again people just talking helps me XX HG
Sending you a big hug … I too was only married just before DX, so can empathise with what you are going through.
I think you are right giving no 2 a go, I wont repeat what mfb and CM have already said but talking to our chemo team does help. I was sick first time around but they sorted me out. I also had a stay in hospital with neutropenia, after which I had a weeks worth of gcsf injections each cycle. I never had the ‘good week’ that others have, from 2 onwards I had a few ropey days then it was ok the rest of the cycle. I was also delayed 10 days over Christmas, as I got a chest infection.
You say you can’t imagine cycling, running or swimming again - let me just say … I was no where near our starting fitness … I didn’t do any regular exercise (naughty girl!!) I finished chemo mid Jan and I’m now seeing a personal trainer and I’m building up my fitness (we’re even taking bikes to Center Parcs next weekend)… I’m sure you’ll be able to get back to it too.
I hope all goes well for you, whatever your finally choice is,
I feel for you, and felt the same way as you two years ago.
For me the percentage benefit was 12-15%, but even then, i was in two minds to even have chemo as i was so fearful if losing my hair!
After my first FEC, i was hospitalised for neutropenia and fever, but after that,i was fine, until TAX which made me ache like hell.
It is a hard long road to walk, but if you stick with it, at least you can say that you threw everything at it, and you can’t do more than that can you?
Talk to your onc, explain how you feel, and see what can be suggested.
Thanks Annie i think just hearing others have had problems helps; i already feel better about chemo2 i think psychologically i will be 1/3 done and if i could get to chemo 3 then i will be half way through.
My husband is being very good but i know it has really effected him too; I suppose it will make or break as the saying goes. It so hard just being married this should be the most fun time. i feel this cancer has taken my health, fitness and affecting my marriage i could get very angry!
I cant go back I know so there is no point wishing i never had it or i will end up in a really dark hole. I am desperately trying to lift myself up and think “get on with it it will soon pass” when i was in hospital isolated and very down i kept saying “this too will pass” and i suppose it has so i should try and take strength from that.
I just wish my OH was a better liar when he says i still look lovely! Sundays are always hard for me for some reason. Thanks Annie
Naz, thank you too; it all helps and once again hearing others have had problems is so helpful; i kept thinking “why me” both hospital stays but reading these posts makes me realise not everyone’s body copes without any hitches along the way.
The hair is awful i look like an alien and i have gone from thick shoulder length curly hair to bald! understandably my OH is finding the new look hard; although verbally he has been nothing but supportive.
My wig is nice but itchy after a few hours and i have to take it off is anyone else feeling that? i suppose you have to persevere with the wig until you get used to it. Thanks again everyone i dont feel so alone. HG X
Holly, beg, demand, cry if necessary , but get your onc to prescribe EMEND also called aprepitant. Google those and you’ll find out about it. It works on the vomiting centre of the brain so you don’t feel sick. It’s very expensive so not the default but is so good for those of us for whom the regular anti-sickness drugs aren’t enough.
Call the helpline and also give your hubby the number, this disease affects everyone in the family.
Your sense of self is being seriously challenged, your phase of marriage is being challenged as is your physical and mental well being. BC attacks us from all sides.
Your husband is dealing with the situation and being as supportive as he knows how; find a way to trust in his supportive comments and share with him how you are feeling in an honest way. From what you describe he is doing everything possible to support the woman that he loves and when we are feeling low that is often hard to accept or even understand - he may well have really liked it but I would be fairly confident in saying that he did not marry you for your hair! He married you for you!
I have been married over 20 years and still ‘doubt’ as a result of my appearance much to my husbands annoyance! I never bothered with any head coverage when my hair fell out - never coped coped with hats or anything on my head and thankfully hubby and kids were happy with whatever worked for me. Bizarre I know but felt more conspicuous with wig than I ever did without it.
As CM wisely says there are meds to reduce the side effects when our body reacts and produces SE’s.
Speak to your medical team and take the time to make a decision, whatever that may be, that is right for you,
MFB and CM you are both so kind to spend time on me and i can not thank you enough. I hear everything you are saying and will follow your advice.
I am trying to get through today as this is one of the lowest days i have had since the start of all this. I am sure tomorrow will be better. I will give myself a kick up the B–!
One day at a time i suppose but i will do chemo 2 i think. Thanks Ladies once again xx
Holly, i hear you with the hair, i really do.
Mine was thick strong and curly pre chemo, when i went, well you know…
My OH also tried to be supportive, but being bald and one breasted did 0 for me.
Two years on, my hair is back and getting stronger.
If it is any consolation, my wig was also very itchy and uncomfortable, and i had to remove it after a few hours. I wore scarves in the summer, but could only brave bald in the bath, as my children who were 2 and 5 at the time were quite apprehensive of the bald look!
As mfb says in her post, your sense of self and identity is being challenged to the limits at the moment - please do not underestimate that, take any offers of help, support, days out to pamper yourself, what ever it takes to lift your spirits during this chapter of your life.
Speak to the medics and demand drugs, you do not need to suffer during chemo, there is plenty available to put a stop to any sickness you may be experiencing at the mo.
Hi holly and lovely ladies on this thread. Just came across your thread.
I started chemo fec-t on 11 Jan 2012. I’ve had my 3 fec and 1st t so far. My journey has been rough and if anything could go wrong it has. I promise you dear you Will get thru this. My 1st fec and 1st tax was the worst so far. The way i see it, you are young and having the chemo gives you the best chance of kicking this disease out forever. At least you can say you gave it your all.
I was so worried about losing hair! Pre dx i was probably the vainest person on the planet. I have used cc and lost alot but have a thin covering now. My main fear was how repulsed OH and lo’s would be. I’m 30 lo’s are 4 and 15 months. But WatEva life throws we deal with it as women we are strong and as hard as it is can get thru.
I agree with Naz call the helpline thru these dark times and we on here are always here for you.
I hate my wig we fall out alot! So now i wear headscarfs as I’m more comfortable and not constantly worrying if anyone Will notice.
This kind of thing makes or breaks a relationship. My OH has been my rock which I’ll be eternally grateful for. I couldn’t ever talk to him about this in early days of dx without having total melt down. But as time has gone on i feel talking to him about it made him feel like he can help and has defo brought us closer. Didn’t think could get any closer!
Anyway sorry for waffling just hope you are ok and can take some words of encouragement to help you on this terrible journey.
Don’t worry about your fitness - it will come back. I had 8 cycles of chemo, a year of herceptin, I’ve had three operations for a delayed reconstruction, I am now five years on and next month am running the London marathon. I know you triathletes are an obsessive bunch (my OH is one), so do whatever you need to do to deal with the cancer then get back on your bike!
Don’t worry about your fitness - it will come back.
Take the advice from others about the sickness meds. For a 58 year old I was pretty fit when diagnosed in August 2010 - I did Scottish (very energetic) and English dancing and also cycled and walked (fast) around my local area. By the time I’d finished chemo - with a gap in the middle to have my appendix out - I could barely get round the block at a slow space.
I finished chemo in March 2011 and rads in May 2011 and by the end of August I managed to cycle round Rutland water - about 23 miles. I’m now back doing all my usual activities and am just as fit as before.
I know it seems impossible at your stage in the journey, but it will come to an end and you will gradually get your fitness back.
Hang on in there - take the days one at a time and make the best of each one - even if it’s a day when even the tv is too much and listening to the radio is as much as you can manage.
I had really bad nausea and vomiting from the 1st 2 FECs (though not enough to put me in hospital and haven’t had any infections) Aprepitant didn’t work for me but Cyclizine did. You can get it in tablet form which prevents the onset, or if you haven’t been given the tablets an injection, for me, stopped the nausea and vomiting immediately.
As for fitness. I was a very fit fell walker and cyclist (though nothing like triathlete type fitness, just a nice bit of recreation cycling and riding to work (which involves cycling part way up a mountain to the office). On some days I’ve managed a 3 mile walk (though only slight inclines as hills are beyond me at present) and have done anything from 2 miles on the bike to a surprising 10 miles (including some moderate hills), a couple of weekends ago, one and a half weeks after Taxotere chemo 5. Yet, after chemo 4 I felt so bad I told my friend I could no longer envisage riding my bike, walking up a fell or ever feeling well and without pain again. It can be surprising how different chemo’s are and when you get some really good days it’s amazing what a boost it gives you and makes you feel that it is do-able.
I know how hard it is for you if you’re not sure the benefits outweigh how ill you feel at the moment. For me it was any easy decision - I wanted as much treatment as they were prepared to throw at me to improve my prognosis.
I hope things improve for you. Sending you my best wishes.