I have had WLE and currently on chemo regime of 4 FEC and 4 TAX - I am due to have Chemo No 7 on Wednesday (TAX), this will be followed by RADs.
I just do not want to go on Wednesday - I think I have had every side effect possible (and a few new ones!). I still haven’t recovered from Chemo No6 and It’s the thought of knowing what is coming, but the worst part is the zero energy. I have children (aged 17 and 11) and a workaholic hubbie, I feel sometimes that I could just literally crawl from place to place, everything takes so much effort, and it just makes me feel so pathetic. Everyone around me seems to be so full of life and energy - I want to be normal again - to the point of distraction!
When I try to say that I dont think I can do this anymore, everyone just say’s “I cant imagine how you are feeling, but you must continue with your treatment”. I just dont feel that I am being heard. And now I feel like I am just bleating on!
You are much further on in your treatment than me, but I felt exactly the same after my third FEC - it completely knocked me for six, and drained me of anything energy or will to do anything. When I moaned/ranted etc etc both hubby and eldest daughter were like ’ but you have to go back - the treatment is helping’. I’m damned sure it didn’t feel like it !!
Although my treatment regime is the same as yours - it’s in a different order - I’m having 4 x Fec, 20 rads sessions, then 4 x Tax. I finished the fec on 30 Jan - and start rads on 21 Feb.
If I had had to have the tax straight after the Fec I honestly don’t think I could have done it. I am so relieved at the moment to be free of chemo/needles/all the horrible side effects - and the thought that I don’t have to start again till April is all that’s kept me going lol.
At the end of the day, following my prognosis from my onc, and seeing how much the treatment improved my prognosis (from a very bleak one I have to say) - I know that no matter how I feel I have to keep going. I just try to think of it all in small chunks - when I initially realised that with Herceptin to come to - I would be having something intravenously dripped through my body until May 2009 - I couldn’t bear to think about it. That’s when I started to break it down into ‘manageable’ chunks (just!).
I hope you get through this - please keep posting and let us know how you get on
take care
Karen, I know how you are feeling because when I did 4 Taxotere last year I was in bed for 16-18 days of every cycle due to the severe joint pain and fatigue. At one point my husband was very worried as I was sleeping 16 hours a day as well. Aside of hair loss I had looked well all through my treatment and was one of the lucky people who sailed through rads. Taxotere scared me as I looked in the mirror and saw a lady 15 years older than me; even my GP said I looked very ill. Luckily we have a virtual business which is run from an office at home, so OH is here most of the time and was able to combine work with being my carer. He was excellent as he made sure I ate a proper balanced diet which I think helped me to recover well post chemo.
I did the first 3 cycles of Herceptin when I was on Tax and my onc told me they often find the combination of the 2 makes the side effects worse. I know it’s hard, but I felt I just had to resign myself to the fact that life was going to be difficult for a few months. Margaret has a very good point about breaking things down into manageable chunks. I found when I was first diagnosed friends and family kept talking to me about “in 12 months time you’ll be well again”. This really irritated me as I found it better to break things up into blocks of treatment starting with my surgery. As I came to the end of each block I felt I had achieved something. I finish Herceptin in April and feel very well now. I had a new job which went pear shaped because of the employer’s attitude and all this has made me realise I should now retrain and work for myself as I don’t need to follow the former path I was on - I just figure if I don’t do this now I will never do it and will end up miserable and in something I don’t enjoy. I plan to work with my OH in the business.
Please try to hang in there, I am a great believer in things coming right in the end.
I too can sympathise with your thoughts at this stage. It was back in 2000 that I had 8 taxotere. I don’t know if back then the strength of the mix was different. I know i felt awful towards the end and looked it, but I dont recall nearly so many ill-effects as those on it more recently have mentioned. Even then, my oncologist was reducing the dose thru the cycles down to 70% at the end. Why not contact your BCN - tell her how you are feeling, and ask her to talk to your oncologist to see if there is a possibility to reduce the dose on these last 2 cycles. Just that knowledge alone may help you to cope.
I had 4 x FEC and 4 x Taxotere, and finished on the 1st November. Like you I thought I would never make it to the end, especially the last Tax, and didn’t want to go on with it at all. In the end I got through it, although it was tough, especially in the weeks following the last one,as not only did I feel ill, but I looked it! No eyebrows or lashes, only a bit of hair. all my finger and toenails discoloured and ridged, aches and pains and no energy at all!
But, now I am getting back to normal, hair is 2 ins long, eyebrows and lashes are back, (so I look much less like an alien), lol, and I now feel very much better than I did, but above all, I am SO pleased that I stuck with it and gave myself the best possible chance of zapping the cancer to kingdom come.
Stick with it Karen, it’s nearly over, you have come this far and the light is showing at the end of the tunnel…
Hello Karen
I had 4 Taxols and tomorrow have my last EC, 4 altogether. I do not know what it is about number 7 but I felt very low before I had it and really did not know how I would get through. I have spoken to other women who felt exactly the same at treatment 7. However I must say I got through it even it was with the aid of lorazapam during chemo!
I was feeling more positive about my last treatment until yesterday and now feel very down. I cannot understand this as its the last treatment but all I can think is I know whats coming ie the sickness and I have had enough.
This chemo is really tough and I have felt every emotion under the sun but we all get there in the end.
Best wishes Alison
Hi Karen try to get through it honey.I was so tired and just plain ill on tax and for me it was cumulative.By the last one I could only walk a few yards and was so breathless I was scared.BUT it does get better.My onc said ‘‘you’ll look back in 6 months and be amazed at how far you have come;then you’ll look back in another 6 and be amazed all over again’’.He was right.I finished tax in May and rads in June last year now I feel almost back to normal.Your children arent babies,I’m sure they and yuor husband will help you.Try to finish your tratment,you are nearly there.Just think after Wed you’ll be able to say,‘only one more’.We are all cheering you on.Love horacexx
Hi Karen,
I can relate to all you say and how awful the whole experience is but try to keep going and give yourself the best possible chance of beating this awful disease. I have done 4 EPI and one cycle of CMF and have had every stinking effect possible. I I was due to get a further 6 CMF but my onc has stopped my chemo due to the effect the chemo has had on a condition I have anyway - ulcerative collitis. The chemo has given me severe attacks of collitis every cycle and now the risk of me prolapsing or rupturing the bowel are too high.
This is a double edged sword for me as I am only half way through my treatment and obviously I want to do anything whch will enhance my chances. On the other hand I want the horrible treatment to end. I can see where you are coming from but try to go on if you can so that you can tell yourself that you have had all possible to get rid of this beast. Once it is over you will forget how bad it was and you will be glad you did it. Sending you luv and strength to carry on. X
Mags
Know exactly how you feel… Actually motivating myself to do No. 7 was really bad, just wanted to run the other way. I think the hard bit was everyone telling me I was on the home run, and how pleased I should be that its nearly over - its NOT over. Must tell you that No. 8, last one (4xAC4xTax) was so very different - obviously still got rotten effects, but head was so much clearer and positive feelings had returned.
Just you hang in there - take each day as it comes and if its a better one, make sure you do something nice. Like everyone else has said, you will look back on this and be so glad (and bloody proud of yourself!) for giving everything you have to kick the buggers into touch.
I had 4 FEC + 4 Taxotere 2 years ago (started 14th feb 2005) wow cant beleive I am here saying 2 years ago. I really struggled with numbers 7 and 8, think it was mainly due to my original plan of 6 FEC I remember wanting Taxotere but hadn’t realised it meant an additional 2 sessions. It is very tiring and hard work doing 8 in a row (I also started herceptin with taxotere) but once you get that number 7 out of the way then mentally you can just focus on number 8 being the last. My kids were 8 and 6 when I got diagnosed and I was 37 although felt alot older, like you say everything was such an effort, so I just made sure I got as much rest as possible as soon as they left for school and quite often I would have to set an alarm to wake me to fetch them.
Do you see your Onc prior to each treatment, I always did, perhaps if you have good old chat with your concerns they may agree to lower the dosage or it has been known for Oncs to allow treatment to finish sooner depending on stats and %'s.
I had 3 x FEC followed by 3 x Taxotere. I was ready to give up after the first Tax - the side effects were so horrible. But I didn’t and am pleased now that I struggled through.
Just take it one day at a time and just think — after this Wednesday’s Tax you’ll be able to say - ‘just one more to go’ . Try to hang in there. I know it seems like an age - but you will get there.
Oh yes yes yes I know that awful and so wrongly named ‘fatigue’…when in the depths of it I want to stop and stop and stop some more. I am inconsolable in my wretchedness and if I were strong enough would hit everyone on the head who tells me: ‘take a day a at a time’ or: ‘think how its zapping the cancer’…
I did 6 AC before surgery, then 4 taxotere after surgery…and then I was no evidence of disease for two and a half years before a regional reccurrence last April. And I’ve done and am doing more chemo since (currently carboplatin and gemzar) and I hate every one of them…though the fatigue was the nightmarish worse on taxotere. I question every time ‘what is the point’…and I do wonder. I also think the taxotere may have given me my treasured 2 plus years withoout recurrence…but who knows I might have got them anyway.
I have no instant solutions or reasons why you should or shouldn’t carry on with chemo…but I give myself permission to stop chemo when I choose…I give myself that permission every b*** cycle…and somehow giving myself that permission helps me to keep going (though sometimes it is perhaps easier to keep going than to stop).
If it really feels too awful and too horrible then ask your onc what difference it could make at best…ask those questions…you don’t have to do chemo just because everyone else seems to.
I think I’ve got better at dealing with the zero energy…I try not to rail against it so much…I just welcome the tear drenched pillow and lie in a darkened room feeling really sorry for myself…cause if you can’t feel sorry for yourself when you’re on chemo when can you.
Hello Karen and everyone
My blood test i had today show that my Neutrafils have gone from 0.6 to 3.9 so i am to have my first Tax this Wednesday. It has been put off for two weeks i have already had 3 FEC.Do not know whether it was a good idea to read all your comments and experiences because i am absolutely terrified about Wednesday even the steroids i have to have tomorrow. But to think you Karen and everyone else have done this and no matter what the terrible effects have been to your bodies and your spirits you are all still here to encourage and share your feelings with such honesty courage and care. I can relate to the comment about the treatment being broken down into parcels i am to have 6 weeks Rads then 18 Herceptin and all i can think of is this week and getting through it. I went and bought two cream cakes from M&S when i had the results today as the reality set in that yes it is going to happen it two days time. That was silly but it did for one tiny moment make me feel better !!!
Another thing i have been seeing a Hypnotherapist for about 5 weeks who has put me on Bach remedy and i have felt brilliant since my last FEC,i even rang the chemo nurse to make sure she had given me it all. Everyone tells me i look good( i think i look like Quasimodo !) and i do feel good even though my bloods were to low, but everyone one of my FEC have been delayed because of infection or Neutrapenia. The oncology nurse in charge of the Tax has told me that there is no problem with the Bach and having chemo.I will let you all know if the Bach remedy eases the symptoms am off to have another shot of it now they put Brandy in it to make it more palatable !
Karen and everyone i am thinking of you all and on Wednesday Karen i will be with you willing you on.
Lots of love
Kate xx
Kate,
I’ve just had my second of 3xTax having finished 3xFEC so same regime as you. I’ve also had ongoing problems with blood counts - my bone marrow seems to take the chemo personally and then sulks for ages afterwards. Still, moving from FEC to Tax isn’t so bad. For a start the Tax is dripped in rather than pumped in so it’s generally a lot more comfortable, quicker and no nasty taste in the back of your mouth/nose and no red wee. Also, where the effects of FEC kicked in for me on the same evening as treatment, I (and the lucky lady I get zapped with) both found the first few days after Tax were fine. Loads less nausea although I took all the tablets anyway (you can wash them down with some of the Bach brandy!) The Tax seems to kick in on the same day it starts bashing your wbc count (day 5) and counts reach their lowest on day 7 so keep a strict eye on your temperature if you’ve already had neutropenic problems. Also I got mouth ulcers on Tax which I didn’t get with FEC so a good mouth wash is my top tip. Finally, it’s worth having some codeine from your GP for the joint pains which, like everything, are worse at night.
I’ve found the whole chemo thing pretty hard going (who doesn’t?) and that’s having only 6 sessions instead of 8 (how do they decide?) so I can only say to Karen and Alison good luck for this week and hang in there.
I’d take my hat off to you all if my head wasn’t so b****y cold!
Charlotte x
I am having my last tax on the same day as you ( wed ) ive had 3 FEC & 3 TAX and am having 18 HERCEPTIN which started with the TAX, i know exactly how you feel but think of what you have already put behind you and now there is light at the end of the tunnel, i start 5wks rads in march and ive worked out if all goes well my last HERCEPTIN will be on xmas eve which seems a long way off, but at the time when i started my chemo last october i got so depressed at the thought of having to go through this, i had terrible sickness with my 1st & 2nd FEC and then was in hospital 6 days with 0 white blood count with my first tax, i agree with you about the energy thing it is a shock how tired and wiped out you feel ( will we ever feel normal again!!) but you only have to read this site to know that we will get there like so many other women (and men) please keep strong i will think about you on wed im having my TAX/HERCEPTIN at 10am so you are not alone
HI Karin WEDNESDAY is my chemo day too , so come on we’ll hold each others hand (metaphorically )and get through this poohy business together. If you read my blog on EPI Sunday> I really thought I was losingit, I thought I was gonna crack up with fear and anxiety!!! Love and hugs Bobbie aka Corsa
Can barely see the screen, through the tears. I really can’t thank you all enough for spending your time replying to my post - I logged back in thinking, there wont be any replies and here I am a jibbering wreck - overwhelmed by all of your positive thoughts.
It is the zero energy thing that really is getting to me, it just makes me feel so pathetic - I know I have to get through this regime as I am triple negative - so surgery, chemo and rads are my only ticket off this nightmare. I am going to speak to my onc tomorrow and ask him about lowering the dose. I am having my treatment done privately, but I dont know if anyone else feels the same, but being seen privately is very isolating? I do have a Breast Care Nurse, but she can only ring me when she has finished her work with the nhs - so it means waiting around for a return phone call.
Thank you all so very, very much for all your replies, much love and good wishes to all of you about to start with Tax, I am sorry if I have worried you, please remember all chemo drugs affect each person individually, one side effect someone may have doesn’t mean that you will get the same. And for everyone having chemo on the same day as me - MASSIVE cyberhug to you - gotto get through this…
Just waiting for the chorus on Thursday morning…
“One more to go Karen, hasn’t it gone quickly!”
You may read of my actions in the local press, “breast cancer woman on rampage with family and friend’s mobile phones - trying to shove them where the sun does not shine!”
Love to you all, thank you so much and going to print out you replies and read them when I start feeling wobbly.
Head down and get on with it Karen! I too am triple negative. My prognosis wasn’t good 4 years ago when I was put on the same chemo as you - I also had six weeks of rads! I had a 2.4cm, grade3 tumour with vascular invasion and spread to lymph nodes.God knows it ain’t easy, but you’re three quarters way through it.The Taxol did make me progressively tired - and I don’t think I would have coped well with a 5th one! But my energy soon returned and with it my hair - which grew back in no time! I’m so glad the chemo was available at the time for me as I believe it’s one of the best for our sort of tumour…and here’s to 4 years down the line for you too!
Josie - thank you for your comments - you need every shove possible to get through this. To hear from you, 4 year’s down the line lifts me more than you will ever know.
I went and had the Tax, but at a lower dose as they agreed that I was having too many side effects (hurray!) and also found out I was aneamic - so no wonder I was feeling so awful.
Much more positive now, I really didn’t think I would go for the 7th, but I knew if I backed out now then I would be left with more “what if’s” than I already have!
My Onc said I am to have 31 sessions of radiotherapy - so that’s the about the same as you, we have nothing else to chuck at it do we? Ho hum, onwards and upwards!
Thank you ALL once again for your brill comments - they really did kick my ASS back into gear.
Well done Karen, no 7 is done and dusted and lower dose so well done again, now just one more to go, the light is nearing the end of the tunnel. make sure you have one almighty treat on the last treatment, I always celebrated the end of any treatment with champagne and double choc cheese cake before the side effects kicked in.