I need your help and advice badly! I have had a full mastecomy and local node clearance last October 2007, have had 8 session of chemo, 4 x FEC and 4 Taxotere, full 20 sessions of radio that finished at the end of July 2008.
I seem to have developed all the side effects that are listed, my eyes are constantly watering, sore and crusty in the mornings !! I have had my tear ducts now drained 3 times and although initially there seems to be some releif it doesn’t last for long, I have to wear my sunglasses almost permenently and sometimes even find it difficult to focus on things because my eyes are constantly full of tears.
Any advice, or help ?
I am also struggling with aches and pains in knees, ankles, wrists, elbows all the main joints. I find it difficult to get out of a car, off the toilet, out of a chair etc.
I am currently taking glucosmine suplhate and cod liver oil but it doesn’t seem to be making any difference - help ???
It sounds as if I am having a real moan but after going through what we all have it seems that the side effects are on-going, maybe I am being impatient, but i would like some semblance of normality again - do I have any hope of that and when ??
If anyone has any suggestions i would love to hear from you and i will respond.
Myself and my OH got married last saturday, spur of the moment thing, all planned in 2 weeks, we must be mad but we had a wonderful day and all our guests have donated money to Breast Cancer Care - can someone also please tell me how to donate to this wonderful medium. It has really been a great source of inspiration to me and we would like to say thank you.
I had 4 FEC, 25 radiotherapy sessions, 4 Taxotere and then Herceptin. From surgery through to the end of Herceptin took about 18 months. I had a very hard time on Taxotere, culminating with me ending up in hospital isolation with no immunity and a huge chemo burn to my hand - unfortunately the last dose had punctured a vein, but the burn didn’t start to show for about 7 days so there was dispute over what it was (had to be checked out for cellulitis and other infectious diseases).
Most of the problems I had with Taxotere were to do with severe joint pains (first cycle was excruciating and my OH had to contact the hospital for advice as I could not bear it). Since then I have had knee problems. I was a volunteer in a stress management programme at my local Maggies Centre last year and we were encouraged to try meditation and yoga. I have found the yoga helps with the joint problems and have now joined a class on a Monday morning - I try to get up an hour before my OH in the morning to fit a yoga session in at home as I find if I don’t do it for a couple of days I ache again. Like you I am also taking glucosamine. I also went through the menopause on chemo and I don’t think this helps - I’m only 47 and I sometimes feel prematurely aged!
Not sure what to say about your eyes - perhaps you should get an optician to check them out just to make sure there is no infection going on? After I finished chemo I had to go to the optician for a test involving putting drops in the eye an hour before the check up.
I have a mastectomy last November followed by 3 x FEC and 3 x Taxotere. My eyes were a mess too. I was blinded most of the time. Saw my doctor and had two sorts of drops but neither were any good. Just had to wait and get through it. I bought some Optrex which helped a bit but didn’t cure the problem. I finished chemo on 26th March and it’s only in the past few weeks that there’s been an improvement.
Experienced some joint pain, especially my knees. The worst was my back. Could not sit up. Went 2-3 weeks at a time laid flat out. The doctor gave me some painkillers for my back which helped but constipated me!!! Might take a while for the cod liver oil to get into your system.
Thank you for your response its incredible that Taxotere can do so much good but has awful side effects - the FEC was a breeze compared to Tax, I only suffered with low blood count on that and feeling very tired.
Maybe I will try yoga - used to do it years ago and loved it but would be unsure as to my flexibility now, don’t like the thought of getting on the floor and not being able to get up again - !!! Still at least I could provide some entertainment for the rest of the class
Thank you for your response - its very unfair but it makes me feel so much better knowing I am not the only one stuggling with these side effects. Think I might take myself off to the opticians because my eyesight has definately got worse. The bone pain after taxotere I think is probably the worst pain I have ever been through - can only compare to labour pains !! I was like you - my OH was really very scared as I was popping co-codomol like they were going out of fashion but they did help with the pain.
Where are you now in terms of recovery and how you are feeling ?
I suffered with constantly runny eyes, blurred vision, soreness in my eyes when I was on Tax. I finished chemo in March and it took about a month till my eyes settled down. I tried several eye drops but the only ones that helped were Boots Hayfever drops which really made a difference. Might be worth a try?
Hi Jackie, well I finished taxotere in May 2007 and just finished herceptin and I am having a terrible time with watering eyes. I must admit I haven’t mentioned it to anyone though. I might do when I go for a check up in October. The slightest thing starts my eyes watering. My eyelashes haven’t come back very mush neither have eyebrows. I never had trouble before bc. I am constantly wiping away the tears and this makes me have nappy rash !! Should go to thew doctors though , don’t think been to docs since dx. Love Eileen
I finished chemo on 26th March and radiotherapy on 5th June. I went back to work full time 9th June. I am currently taking Arimidex. I’ve been very lucky so far with the Arimidex. I stiffen up if I stay in one position too long but once I get going I’m OK. I do get tired though. Weekends I usually try and re-charge my batteries - so no clubbing!!! I’m usually nodding by 10.00 p.m. I’m due to have a reduction on my other breast at Leicester on 4th December and hopefully will have reconstruction next year.
I suppose compared to some I have been very lucky. I do worry about the future. I try not to think too far ahead but sometimes its difficult not to. I’ve never been in labour so I have nothing to compare the pain I was in with! All I can say is it was horrible and really got me down.
Hope you get on OK at the opticians. Let me know what happens.
Well I went to see my GP and all she could tell me was that both the runny eyes and the aches and pains were side effects of the taxotere !!! Well, well, who’d have thought ? (Note the sarcasim).
It really annoys me that we have to go through surgery, chemo and rads and then end up with awful, inconvenient side effects that no-one seems to care about or be able to do anything about…
I know in the grand scheme of things I should feel lucky that my BC was spotted and I have had all the treatment available to me but … I feel like I have been left to cope with all this c…p
It amazes me that you meet people (professionals) through your treatment who really don’t seem to know a) what they are doing or b) don’t care.
Anyway rant over with - sorry to be so negative but sometimes I feel like I could blow a gasket, I know that doesn’t help but …
How are all you lovely ladies doing, I’m very impressed that you went straight back to work full-time Lynda you must be super-human !!! What do you do for work ?
Don’t worry about the rant I often have one. I was talking to a nurse at my doctors last week and was asking question about Arimidex, she told me that she didn’t know anything about it! You are definitely right about the “professionals” some are OK but some leave alot to be desired. I hate it when they say “I’ll ring you tomorrow” and don’t!!! This is the speciality of my breast cancer nurse. I find you really have to be on the ball with them and more to the point, one step ahead!
I’m a secretary but my boss and colleagues were great. I went to work when I could and they picked me up in the morning and took me home when I’d had enough, so I was able to build up gradually. I didn’t go to work every day just when I felt strong enough. The thing that drove me on was that I missed them so much. They are a great crowd and I missed the chats, endless cups of tea and coffee, the gossip and the laughs. They were all so lovely and supportive. I was doing about 4 hours a day when I was having radiotherapy and then stretched it to 6, so by the time I’d finished treatment I was nearly doing full time. I took things very steady and rested in my lunch hour, and I always knew that if I didn’t feel well I could go home. So it worked out quite well.
I was very lucky with radiotherapy, I didn’t have any side effects. My skin didn’t burn or itch and it was a complete doddle.
Hope your eyes soon get better - it does improve, believe me!
I had 4xfec,4xTax in '04.For twelve months afterwards I had a lot of trouble with joint pain.I developed bursitus in my shoulder (which luckily a course of anti inflamatories shifted)At times my back was so painful I couldnt walk to the car without holding on to my son for support, and my feet felt like an old womens- it took them a couple of hours each morning just to thaw out! When I asked if it was anything to do with the chemo I was told that it was probably the menopause and that old age was starting to creep up on me- I was 46!! I can happily say that after about 12 months of overdoseing on codliver oil I had much improved .And now 4 years down the line I’m as supple and painfree as in my pre chemo days - apart from my poor old feet.I still have peripheral neurapathy in them,but these days they are more numb than sore.A small price to pay as I’m certain that without the chemo I would not be here now!
Wow josyemarie that sounds encouraging although 12 months is a long time to wait before I can get out of a chair without wincing it is at least something to look forward to. I am also taking the cod liver oil and waiting patiently fo it to work.