Long Term Side Effects from TAXOTERE ( Taxol Hercepton ) chemo drug

Question

Hi All !! ... I had DCIS4 Breast Cancer, lump found Dec 2011, right breast off Feb 2012, treatment started march 2012, ceased by me in Sept 2012 after radiation due to over kill on chemo drugs... I use to be here on this page around 4 years ago. I am now in my 5th year of remission, yay! BUT... I am suffering still from the effects off TAXOTERE, ( Docitaxol ) drug. Every now and then my body goes through this stage, sometimes different symptoms, but familiar to me. I have residual effects off most of the drugs I had then, plus radiation. My Liver function test is always poor, and has been since my first round of chemo, March 2012.
My symptoms can go for about 2 weeks then I'm ok for a week or two then back into it again. This is 5 years on!! and I am still suffering! I can't work a normal job, I spend most days at home, and doing very little when I am unwell. When I have the energy I go out playing with my band ( rock chic ) and do normal stuff.
My chemo was FECU... ( The Red Devil ), Neulaster injections, another injection to thin the blood, 18 pills a day, Dexamethazone, OxyContin, Ondansitron ( excuse my spelling also ) the TAXOTERE, hands in ice for 2 hours a day! bone marrow injections, meds to stop diarrea , meds to make me poop, meds to stop me vomiting, creams, lotions and potions, all while I lived on 2 minute chicken noodles, rice cakes and milo for almost 9 months.
Today my aches and pains are; .... sore red itchy eyes, or weeping eyes ( had that in chemo & radiation ), blurry fuzzy vision ( I now wear glasses, but that doesn't help sometimes ) peripheral neuropathy numbness in the ends of my fingers and toes, very sore feet to walk on until I get going, then it's not so bad, cracked heels, skin peeling off my feet, joint pain, cramps in legs and hands. migraines, ringing in the ears, nausea on and off, disturbed sleep, wake up several times in the night, or sleep like a log and wake up feeling shit... gut aches, bowels are either constipated, or go 6 times in the morning. My libido is 0% !! I have a Haitis hernia from all the vomiting through chemo, as well as GORD, really BAD indigestion to the point of waking up with backwash ( fluid ) and having to vomit. My liver is very 'fatty'. my weight fluctuates. My mouth becomes dry, sounds like i have a cold, feels like I have the flu, I have taken to drinking bourbon every day , 2 -3 cans in the afternoon to stop feeling like shit! Sometimes I'll have one at lunch if I can't get myself together... like now :smile: and the good old tired but can't sleep syndrome!!
Anyone else feel the same???? I know my cancer has gone, my bloods are always good except for the liver test, and I eat like a rabbit!! and walk, and dance when I can. I JUST WANT TO BE NORMAL AGAIN!!!

unicornkisses · Answer

Wow, it sounds like you are going through the anger stage of the 5 stages of grief.
And have got a bit stuck.
I can't help with the side effects as I am only just started on FEC +D and already had migraines and irritable bowel syndrome before I started.
But perhaps you could find some peace of mind getting some help through the Chronic Disease Mental health program which is organised through your GP
There is also an Allied health program the GP can also organise which gives you access to a dietitian or exercise physiologist or podiatrist for several free visits a year.
Working on helping just some of your symptoms might help you to feel a bit more in control of your life.
I can sympathise with your anger, none of us are going to be the same after we come out the other side, not physically or mentally, no matter how we seem to be to other people.
I guess the trick its trying to find some way to get comfortable within ourselves for at least some of the time.

I really hope you can find a way forward.

jane221 · Answer

Hi @"Gayle Taylor", my diagnosis was around the same time as yours and yes, I still suffer some of the effects from the Taxotere etc I had during treatment but it sounds as though you are still battling on a lot of fronts. @Unicornkisses' suggestion about seeing your GP to organise a mental health plan is a good one and may help you to organise your thoughts and put in place some coping strategies.

I also wondered if you are still seeing your oncologist as they should be able to help with some of the lingering and frustrating side-effects you are still getting. It is hard to move on when you feel like crap and like it will never end. If your oncologist is not helping, maybe look at seeing someone else as although many doctors are fabulous, some seem to become a bit blase about what their patients are going through and you need to be seen and heard. Also wondering if you are still seeing your breast care nurse, or whether it might be time to check in with them, or even contact the helpline through the Cancer Council on 131120 to chat to someone who might understand and be able to offer some other suggestions for help and support.

I do get your frustration about achieving some kind of normality. You have been through (and still going through) a lot and although it is five years down the track it does take a long time to process and move on. For me, it is still a work in progress, with some days definitely being better than others, but good on you for reaching out on here. I wish you all the best, Jane xx

zoffiel · Answer

Crap, Gayle! This is the nightmare stuff that we don't hear about when we're told the drug might save our lives. Unfortunately, your isn't an unfamiliar story. You can add to your list of woes a percentage of woman who's hair never grows back and those who's bladder--and the ability to control it--never really recover

I cant find any research to support this, but I think the intermittent eye focus problems could be linked to the general muscle damage that drug causes. It certainly screws up all the rest, so why not the ones that help you focus.

I had AC ten years ago and have just finished 4 courses of taxotere following a recurrence. I was fit and healthy, able to run, walk all day, heave hay and wood around and pony wrestle with the best of them. 12 weeks later and viola! I'm a creaky, feeble old woman who can barely walk, gets dizzy and can't sleep. For some stupid reason I thought it might be like the AC--do it and it's done with not many long term effects. Now I'm terrified that I may not recover and the damage may be permanent. It all happened so quickly, I was suffering a variety of side effects, mainly associated with my already dodgy gut, but this muscle/joint thing only kicked in after my final round. It shits me to tears. Literally.

zoffiel · Answer

PS. I can now eat a bit more stuff so when I found a packet of bloody rice cakes in the cupboard in the cupboard yesterday I took them out the back and jumped on them. They're still there--even the sparrows wont touch them!

afraser · Answer

That's the only intelligent thing I've ever heard to do with rice cakes!

Those of us who have had a much easier run are hugely sympathetic but it's hard to know what to suggest, and no, with the best will in the world, we don't know what you are going through. I do know if I had to go through this again, I would bear a lot of what I have heard in mind in addition to my own experience and some solutions would simply not be considered. I think almost anything is worth trying once, but not necessarily twice. I am not sure anger or bourbon is the answer, but without viable alternatives, it's far from an unreasonable choice. All we can do is hope profoundly that things get better for you but also support you in your decisions with empathy, without judgement, and with affection.

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Long Term Side Effects from TAXOTERE ( Taxol Hercepton ) chemo drug

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