Is anyone experiencing severe problems with Docetaxel?
I have had surgery this year then proceeded to chemotherapy and had four sessions on FEC. The latter two sessions I managed to cope with at 100% and my onocologist was very pleased.
However, I’ve now had two sessions of Docetaxel and can not believe how ill I feel, especially as my fellow patients have had little of the severe pain in both body and joints that I have experienced. I thought I was embracing my diagnosis, surgery and subsequent chemo in a positive way but the dreaded D has knocked me for six. Instead of recovering in 3-5 days as with FEC, I am now on day 10 after my treatment with D and still I feel so ill.
I have aching body and joints now rather than real pain but I have no energy at all, I have lost 10lbs in weight in as many days as I can’t enjoy my food, want to sleep all the time to shut it out and generally feel I am not improving. I am incredibly weak and need to pause or stop the most simple tasks as I frequently feel dizzy and my legs can’t hold me up. Are they trying to kill me? :smileysad:
I truly don’t feel ‘why me’ or sorry for myself but I am frequently reducing to tears and as this second treatment of D has been just as horrible as the first and is ‘spreading’ to join my next session I wonder if I am on the right track. My oncologist merely said he would reduce the dose from 85% to 75% which I naturally feel compromises my survival rate but the thought of 2 more sessions fills me with dread.
Is anyone else taking 75% or less?
Thanks for ‘listening’ - be good to hear from you.
I am so sorry to hear that you are struggling so much with the dreaded T. Im afraid it all sounds so familiar and many people find it harder than FEC so you are definitely not alone.
I had my first dose of T and felt great for the first 2 days and made the mistake of thinking I would be ok. Hell no, I was bed ridden with excruciating bone pain all over including my teeth and skull as well as a terrible taste in my mouth. All this lasted til day 10 but then I quickly recovered. On my 2nd one I unfortunately had a serious allergic reaction which put an abrupt end to my T.
I am now on Abraxane which as I understand is difficult to get as very expensive as it is a coated version of T which means it dose the same job but much kinder to your system and no steriods needed. My side effects have been amazing compared to T. I have had no horrible mouth and have had mild bone pain which has been handled easy with painkillers.
I do know there is certain funding at some hospitals for this drug and may be worth you asking about it. It is extremely frustrating knowing there is a drug out there that would cause us less suffering yet due to funding not available to all and in the meantime we are put through even more pain than we can take.
I do hope you can get some resolve to this to stop you having to go through anymore pain,
I had the same chemo as you 4 x Fec and 4 x Docetaxol.
First of all just to encourage you a little Ive just had surgery after chemo and I was able to see the docetaxol destroy and shrink the cancer from 4.5cm to 3mm. This is the part I guess you who are on the post surgery side of chemo can’t see. The Fec was bad enough but when I started Docetaxol it did floor me. The side effects you describe eventually lasted from one cycle to the next and are truly torture.
Try to stick with it sweetie. It really is moping up any stray cells that may want to find another place in which to reside.
Speak to your oncologist for medication to help. I got Benzydamine Mouthwash on prescription that helped with the sore mouth.
Taste was also a major problem. I lived on Fab, Zoom and White Magnum Lolipops. Elderflower cordial is lovely on docelatxol and do not worry about your weight it either comes off or goes on as soon as you recover from your last cycle. Hair regrowth starts too. So just concentrate on getting through those last two cycles and you are on the right track to kicking this thing hopefully 100%.
Sending gentle ((((((hugs))))))) your way. Sandy. xxxx
So sorry to hear it is still causing you so much pain. Don’t let your onc palm you off if you feel the pain is unbearable. Yes it isn’t a nice experience and yes some pain is to be expected but not to the extent you seem to be. We know are bodies better than anyone and if we feel something isn’t right we have the right to say. My BC nurses said to me we should not suffer as there is painkillers etc… out there for us and we should be able to live our life as near to normal as possible.
I had my FEC reduced to 75% after I became neutropenic after the first dose. I was told by my onc everyone is different to the dose they can take/require so everyone starts at the 100% but a majority due end up being reduced for some of there doses. Again do get your onc or BC to put your mind at rest
I am nearly at the end of mine now with my last one on 12th November. For all the ups and downs I know it was worth it in the end and I will walk away knowing I have thrown everything at it. Good luck and stay positive, the end is in sight
Emmax
Ps hot water bottles where my saviour on the T and I had total of 4 I jusy kept shuffling around on my achey bones
I am on a reduced dose as I had severe palmar plantar syndrome with my first lot. (hands and feet turned the colour of beetroot, swelled, cracked and hurt like a b*tch). I get a 75% dosage which my onc seems happy enough with. It was either that or go back to more FEC which isn’t thought to be as effective for me.
The palmar plantar still affected me this cycle but nowhere near the level of the previous time.I have been very fortunate not to get any bone pain and can only imagine what it must be like for you.
The way I got though the palmar plantar pain was by focussing on the fact that it is only 2 or 3 weeks ata time and then it will fade away like a bad memory. I am suprised at how quickly you start to forget just how bad it was after the fact.
Stay positive, it’s not pleasant but it is saving your life
I had my last session do docetaxel 12 days ago, and still suffering with pain and aches and fatigue.
I had three sessions of FEC and suffered nausea, and pain with the injections that promote the bone marrow, and my last three sessions was docetaxel and for the first two days I didn’t feel too bad, but on the third day I woke up in tears and sobbed where I just felt like my whole body was in agony, right down to my toes, fingertips - I felt it everywhere.
I was prescribed co-codomol, ibuprofen and tramadol for the pain relief - and it has made it easier, but coupled with the injections it was pretty unbearable and 12 days after my last session I’m finally weaning off the painkillers.
The cumulative effect certainly adds to how desperate you can feel
I am the cleanest I have ever been as used hot baths to help soothe the pain (although relied on my mum to help put me in and get me out as I could barely stand, let alone climb in and out of the bath)
I found ‘pub coke’ the only thing I wanted to drink - carbonated drinks or orange juice and lemonade with lots of ice as I suffered with oral thrush too…
But I hope you feel reassured that it’s ‘normal’ (!?!) to feel like you are.
I hope you get some luck with the Abraxane which I am managing at the 100%. As I said before it is really quite upsetting knowing there is another drug out there that can cancel out all these terrible side effects but due to funding it is not widely available. I can’t remember if I had mentioned it on this thread but my Onc said they are llooking at funding to make this the drug of choice eventually. I am so grateful I have been put on this even if it did take a dangerous reaction first for them to even consider it :(
Best of luck you getting this and I wish you all the luck on the rest of your journey. You can do this and have already got so far
Emma x
Ps I noticed on another post about your friend being unable to talk about what she is going through. Would it be worthwhile you giving her husband the link to this forum. It has been a godsend and she can choose just to read through the threads or post her fears anonymously. It took me a couple of months to post on here and I spent many a night just reading through but it was the best decision I ever made
Hi Beatrice,
I am having the same as you. The pain is almost intolerable and I feel us useless as a rotting cabbage! I find the hardest to cope with is the mouth situation. Everything I try to eat or drink tastes vile, it would be lovely to have a nice refreshing cup of tea instead of some horribly salty liquid. Everything, but everything tastes just awful. If it wasn’t for the smell I would swear that the remains of a pets food dish had been put on my plate.
I also feel so cold, and bone achingly tired, I have no energy whatsoever. I want to cry but can’t. I also have to keep my spirits up as I am a carer for my husband aged 81, who has various health problems including epilepsy. I am extremely lucky with my family who live four and five hours journey away. They have arranged a rota between them so that there is always someone with me on the 4th to 6th day to cook meals to go in the freezer so I don’t have to worry.
I find that the night is worse, especially trying to get to the bathroom in time!
Any help on the food and drink situation would be greatly appreciated.
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Hi ladies, I’m starting Docetaxel/Combaplatin mix with herseptin and nureplatin (not sure on spelling) this is for secondary’s on the lungs. For 5 months. Has anyone had an ok time on these drugs? I’m starting to panic a bit
Thanks ladies, I’m doing three weekly cycles. They have changed my bloody dates for the third Time today so I start on Wednesday with herseptin Thursday then in for the portacath fitting Friday! What a week!
Thanks for that, I feel ready good second day after Dosetaxel, not sleeping well after the steriods but I’m still getting around 6 hours. Did you loose your hair Hun?
Sorry it’s Nulaster not nuroplatin lol too much to remember!!! It supposed to help bring your white blood cells back up. Through spearing on your bone marrow. Apparently they have to apply for funding for it?
Thanks guys, I haven’t really had any se yet other than being tired and can’t taste anything. The did say It would hit Saturday maybe Sunday? We’ll have to wait and see I suppose x
