Joint pain with docitaxil

[Dancing_Nancy]

Hi Samntha and everyone else ... I had my 5th cycle today and went for the FEC75 ... they gave me extra recovery time after what they called a severe toxic reaction to the Docetaxel ... I haven't felt ill for the past few weeks but my energy levels, stamina and mood are still really low ... I also managed to hang on to my eyelashes until the Docetaxel and losing them has been difficult as I don't feel I can paint on my mask like I could before ... I went to a Look Good Feel Better workshop last week but I just don;t like myself without eyelashes and I know that sounds selfish and shallow but it's making me not want to go out and see people which is not good ... I was happily going out with my bald head and lop sided chest no problem but I've turned into a right hermit this past month or so.  I just feel like I've had a complete personality change since the Docetaxel and wonder when I will start to feel like the old me again.

I have to say how much I admire all of you who have persevered with the Docetaxel in spite of the pains etc ... I truly and sincerely wish you all the very best in your recovery

[SML1903]

Hi everyone. I can reasure you that it will get better and the pain will subside after a couple of weeks after the chemo finishes. I found the tiredness lasted a bit longer and found that the surgery after chemo quite tough but then I had a few problems. Eight weeks on from surgery I am going for my radiotherapy planning tomorrow so by Christmas I will have conpleted my treatment. Good luck to you all x

[redrose65]

Hi
I finished my last chemo Had 3 FEC-T Then the 3 T last week, and feel the same as you. No energy,achie all over even my eyes. Keep Strong it can only get better. Thats what i keep telling my self. 🙂

[cassie30]

I'm currently doxeaxtil and had really bad joint pain but went to the doctor and they prescribe really pain killers that really helped me hope u feel better soon xx

[SamanthaL]

How's it going Leonie? You had another Docetaxel on Thursday. For got to ask about your steroid regime, and how's your iron? I had my last docetaxel on Friday, and tuning down my steroids, because although they manage the pain a little, the cliff edge of steroids to no steroids is dramatic, and I have very powerful roid rage, so I take fewer and fewer steroids so it isn't so much of a leap. Means I am in bed for q a few days, but I think that's better than murdering someone. I have also put on weight with the steroids, but hope to take that off next year.

[SamanthaL]

So very proud of you Nancy - making these tough decisions. Was wondering how things are for you now.
Strangely you spurred me on to the last one, which I had on Friday. But hearing how grim it was for you made me realise that fevers and pain is what chemo does, and I wasn't as bad as you.
Also the percentage chance thing, and understanding the odds - is v important. And I think you made the right decision for you.

[Maryland]

Hi Dancing_Nancy....so pleased for you that appt with oncologist gave you some potential solutions. Really hope that you're feeling better today..... 🙂 Please take some time to consider your options for future treatment (or not) and be reassured that whatever you decide is the best decision for you, and you have to be at peace with it. The statistics your Onc gave you would have been based on people with a similar diagnosis to you and, by their very nature, historical. All the very best on your road to recovery....take care xx

[Dancing_Nancy]

Thanks so much for your reply Maryland ... I saw oncologist today who has cancelled next week's chemo and is reluctant to continue with docetaxel because of the extreme reaction in terms of severity and duration ... she is suggesting I either stop now after the four cycles or have another two FEC at reduced dose ... FEC75.

My temperature was still spiking last night and rose to 38.4 which means I should have gone back to A&E but I went to bed and it's back to normal this morning.

She said that full treatment gives me an 80% chance of surviving beyond ten years, and stopping now reduces that to 76% ... I reckon I can more than make up that 4% with lifestyle changes but if continuing with FEC75 gives me another 1 or 2% then I will probably go with that.

[Maryland]

Hi Dancing_Nancy......hang on in there.......the change from FEC to T is the hardest as the FEC is still in your body and the new drug takes it by surprise! My first T was horrendous and I was hospitalised for 5 days in isolation - never did find the site of the infection. However, T2 and 3 were much, much more manageable....started painkillers day before chemo and for 5 days afterwards and pain was minimal. I felt like you for the final one....apart from the fact they mucked up my appointment so I had to go home for 2 hours which prolonged the agony 😞 I remember sitting in the chair with my headphones on, ignoring my poor husband and the general patient banter and laughter.....although the end was in sight, really felt very down.

In 6 weeks your chemo treatment will be over, and you will have given yourself the best possible chance....T is very, very effective apparently. Treatment for me finished in July/August 2012....and I have to say that life is good.....lots to look forward to, have hair, lovely nails and nearly a set of eyebrows lol.

Does your hospital have MacMillan attached? They offer holistic therapies free of charge....I found the massage, Reiki and meditation very helpful.

The emotions you are feeling are natural and OK; it's hard enough coping with the diagnosis, treatment and everything attached to it all, without the debilitating pain you may not have been expecting. Really hope that your Onc appointment today gave you some solutions and wish you all the best for the rest of your treatment....you take care xx

[Dancing_Nancy]

Hi there ... I had my 1st Docetaxel 13 days ago ... I would liken the pain to falling 100ft on to concrete if it was possible to survive it ... absolutely everything hurt and the pain was excruciating ... I was bedbound for five days and I've also had two trips to A&E with high temperature ... and right now I am blubbing like a baby as I type ... feeling so low and emotional.

The fatigue has been debilitating and I am petrified at the idea of sitting in that damned chair next week while the stuff is dripped into me again. This is the worst I have felt since my diagnosis in June having felt very positive throughout surgery and most of the FEC cycles.

I'm seeing my oncologist today and hope they will offer stronger painkillers and a reduced dose of Docetaxel next week ... everything about this is just so hard ... I really really hate self pity but feel I'm wallowing in it right now and struggling to snap out of it 😞 ... Lynda Bellingham's death hit me hard and I feel guilty that I'm not appreciating how fortunate I am ... which has been my mindset throughout until recently.

I do hope others are getting the help and support they need to deal with it .. it did help to read others are feeling floored by it too even though it saddens me that this treatment is so punishing on us.

Best wishes all.

[Toughieone]

Well got some morphine tablets and 2 days later I have really turned the corner. Coping with just paracetamol and brufen twice a day and lots of hot baths and rest. Feel pretty wiped out but at least on the mend. I hope for next time I will anticipate the pain a bit better and be ready to fight it! Just need to get rid of this blinking cough now!! Hehe, always something..... Xxx

[redrose65]

Hi

I also had the joint pain and ended up in hospital. It was awful, i just couldnt do any thing with my self.I was given stronger painkillers and it helped. This time with the T its not been as bad. You need to make sure you rest and i also have Lucozade sport( Rasp) Because i just cant eat anything but soup for a week because of the cotton /sore mouth. I found this to give me a bit more energy.

Hope you feel a bit better soon.

[Maryland]

Hi Toghieone.....just checking in to see how you're doing :). Hope you got the stronger painkillers you needed and they are working. Although side effects of TAX make us feel c***, it is very, very effective so hang on in there......hope TAX2 is kinder to you....take care xx

[Toughieone]

Thanks Maryland. Pain is awful today. Waiting for doc to see if I can get something stronger. I can relate to the several rounds with a heavyweight boxer - feels like every part of my body has been punched! Not coping well with it as so far apart from nausea, the whole chemo process has been quite kind to me! The baths help and I'm away to get my hot water bottle and go back to bed! Let's hope it's only a temporary blip!! X

[Maryland]

Hi.....so sorry you are in a lot of pain and hope the painkillers do the trick. When I changed from FEC to Tax in 2012, felt just like you are describing. Stayed in bed for 2 days, which was just not like me as I worked throughout chemo. Just before Tax2 Onc told me that the pain I had been experiencing was due to the change of chemo regime, that the FEC was still in my body and reacting with the Tax...why didn't she tell me this before?! Plus the bone aches co-incided with the white blood cell daily injections, so exacerbating the pain..!!! For TAX 2 and 3 I took max dose of paracetamol, alternated 2 hourly with max dose of ibuprofen starting on day following chemo for 5 days. This apparently switches off the pain receptors in your brain. Worked wonders for me and bone pain was much more bearable....may just have been that body was more used to it? People have described it as being hit by a truck or going several rounds with a heavyweight boxer! May be that you need stronger painkillers so please discuss with your Onc. Having a warm bath with 'muscle ache' salts in and cuddling a microwaveable heat pad helped too. Sincerely hope you feel better really soon.....all the best xx

[Toughieone]

Have just spent the best part of today in the hospital trying to get some stronger painkillers to try and ease the horrendous joint pain I have had since the T part of my FEC-T treatment on Thursday, the pain in my arms, legs, fingers, ankles and hips,is horrendous. Anyone else experienced this?? Been given tramadol but at the moment it doesn't seem to be having much effect? Feeling wiped out and pretty down tonight. 😞