6 months after taxotere-feeling dreadful

It is six months after i finished 5xtaxotere, I’m not on anything now.
But I feel dreadful, tired,aching (especially shoulders and neck and arms),headaches, nausea just how I felt on chemo.

Dr’s done blood tests but shows nothing up. Anyone else felt like this or is it in my head?!

Sue I can really relate to you on this. I had a terrible time with taxotere and recovery seems slow, I’m nearly 10 months on. I’ve also had blood tests which showed nothing.

I developed severe acid reflux a few days after my last chemo, have had terrible shoulder, neck and back pain (which may also be linked to the surgery to be fair. I had some problems before that with shoulders, neck and back but the pain was terrible during chemo. I think also as I was so ill with chemo I spent a lot of time in bed which probably didn’t help either. I’ve been having physio and she told me they’re currently doing research to look at the effects of chemo on muscles.

I do still get very tired particularly if I do too much. Also the back pain is tiring. I do get nausea even vomiting at times but it’s because of the acid reflux and again when that’s particularly bad I feel more tired.

take care
Elinda

Ifinished my last taxatere y/day having booster 2day it helps me a bit i took strong pain killers eaten like smarties to be honest i also got tabs of doc to relax my muscles turned into a right pill popper hope this helps thank god no more had 8 sessions over a 6month period

Hello! OMG, it’s so good to realise I am not the only one!
I’m not as long out of chemo as you are, I finished 6 x taxotere at the end of June, but have all the things you have both described, in fact some are worse now than during treatment.

I’ve just had blood tests,which have come back ok.

I have heartburn, indigestion, nausea, stomach upsets and a horrible feeling of “something” in my throat. My GP thinks it is acid reflux and so far has prescribed, Lansoprazole (didn’t work) and now Omeprazole, which also hasn’t made any difference. This is all def worse since end of chemo.I’m thinking of asking for an endoscopy(?) to check it’s nothing else.

The aches and pains, which were awful during the treatment, have improved, but are still bad.

I panic endlessly that it’s the cancer fighting back, cos I seem to feel as bad as I did all the way thro’ the treatment.
My onc said to give it 8 weeks for the SEs to go, I think she was being extremely optimistic!
I’m going back to GP on Monday, I wanted to get back to work, but as my job is quite physical, I don’t feel I’ve got the strength to yet.

Your experiences, although not encouraging as such, are reassuring!

Thanks!!
Keep well, Sandra x

I finished in beginning of July and the muscle aches in my legs are still like they were during treatment, also so tired, but not sure if this is due to the hot flushes getting me up in the night!

Hi Sandra

I feel exactly the same! Only 5 weeks post Tax but I am still taking painkillers for the aches and pain, Lansoprazole for indigestion and just this week my stomach has been permanently upset…oh and I have a permanent shoulder ache and headache too.

Glad to know I’m not the only one suffering.

Viv x

Hi all,
It’s such a comfort to know others have the same as me!
(Sorry that you have, of course!)
Headaches, I forgot about the headache, but yes have them too.

Keep taking the tablets!
Sandra x

I had 4 cycles of Taxotere and suffered the extreme end of the side effects, especially the fatigue and joint pains. I finished it in June 2007 and can honestly say my knees have never been very good since.

I finished Herceptin in April 2008 and I still find I get a day every couple of months where I have low energy levels and I have to just rest. It usually happens following a long day out or when I have been on the go all day. I believe it can take a very long time to get over Taxotere.

Well I finished taxotere in May 2007.It took about 18 months for me to be almost norma.I still have peripheral neuropathy in fingertips and toes and I still suffer from fatigue.It is so toxic but still the best there is.One thing is that the dosage depends on weight so if you are at all overweight [I was] the dose has to be large and recovery is slow.Just hope it has seen off the cancer cells.
Valxxxx

Posted loads of time on this.

After three fecs then my first tax I couldn’t get out of bed for a week. Tax left me in agony.

Then I changed my diet, primary focus on ‘liver-loving’ diet, exercise and supplements. I have not taken one painkiller in since (6 months) and the only medication is tamoxifen.

Tax was still tough but the difference instant and incredible. I bounced back from my last tax after a few weeks. I now have a bit of residual fatigue from rads and tamoxifen. but aches and pains gone, ‘insides’ working fine etc etc

Lifestyle changes are tough, but for me worth every bit of effort

Evening! On 13/08 I posted “After Taxotere” and there were a few replies re the indigestion side of things, which goes to show there are a few of us suffering the same symptoms out there.

The thing I’m wondering is…how many of you have spoken to onc / bcn about these probs, but haven’t had much info re these SEs?

I spoke to onc and chemo nurse about these things, but have only been told, “it’ll go once treatment is finished”. Your comments seem to prove this isn’t the case.

If only they could have let me know it is down to Taxotere I wouldn’t have been panicking that it’s the cancer coming back / not responding!

Have a good evening, Sandra x

Hi Gretchen,
What do you eat?!! I’m really interested to know if your diet will help me with my acid reflux thing.

I think I eat healthily, but perhaps it’s not the right diet for the treatment.

eg. my day…breakfast porridge or fruit & toast
lunch salad or soup or sandwich
eve meal, chick or fish with fresh veg / salad
try to eat pulses, grains only eat wholemeal carbs…eat tons of fruit, not much dairy, fruit or green teas.

I’d welcome your feedback as this digestion thing is driving me mad!!

(ps, also take some supplements)

cheers, Sandra

Sorry to hear it but I am so glad I am not the only one!

Had a bad few days altho feel better today but now my back has gone.

My husband keeps trying to reassure me it will take time but like Sandra I have a physical job and I find it so frustrating that is exhausts me and I just want to cry with pain and frustration!

The silly thing every time i have a bad week or two I panic, then I suddenly feel fine again and I think of all those wasted days panicking!

Will look into liver-loving diet as I dont want this to carry on any longer.

Hi Sarah & Sandra

Here is a link to a post it did after my 5th chemo/2nd tax
breastcancercare.org.uk/forum/viewtopic.php?f=25&t=25655&p=423555&hilit=+GRETCHEN#p423555

I’m a little less strict now that I am off chemo, but do include yoga and my breakfast is a pint of freshly juiced carrot, apple, beetroot, celery and ginger juice, or some other combos (sounds terrible, tastes delicious!)

I do have to confess that I did get very tired after my next two tax chemos, but the aches and pains and general apathy went. I am a wedding photographer and photographed 8 weddings in a three week period after my 6&7th chemo. I’m not trying to show off, but just trying to illustrate what a difference diet makes. I was functioning at a higher level after my 7th chemo than I was after my 4th/before I changed my diet. It still wan’t easy and my mum stayed to help prepare all the food, juices and smoothies etc,

I followed Chris Woollams Cancer Active (just google) info.
Now, if I could just work out how to sleep through the tamoxifen se’s I would be fine!

Gretchen, thanks for the info. I’m going to look at the canceractive site…I followed the advice about diet from a few “fight cancer” books and tried to support the liver as much as poss…I took milk thistle too.

Sandra x

Hi Ladies, Just read through all the posts and I can identify totally with everything. I have secondaries in my liver and spine and had 12 weeks of tax. It should have been 18, but it didn’t work and now I’m on Arimidex which apparently does according to my latest blood test. I had all the symtoms you have all described, especially the acid reflux for which I took Lanzoparazole. However, once I finished the tax I came off the Lanz as to be honest, sometimes it made it seem worse. I also took Gaviscon which the GP prescribed but now I take nothing for it and have had no problems. I came off the tax 2 months ago. I’ve still got loads of aching muscles and joints but that’s a side effect of the Arimidex. I’m also on a daily Bondronat tablet for the bones. I was advised to take a Glucosamine/Chondroitin/MSM supplement which I have been using for the last 2 or 3 weeks. I take 4 a day and I’m delighted to say that the aches and pains have reduced considerably. I’ve also been told that the GP can prescribe these so I’ll be contacting him shortly to find out.

Green Tea is also supposed to be very good and I drink a lot of that. I also took Bicarb in a bit of water which helped with the acid reflux. As Gretchen says, ginger is also excellent.

Hope this long ramble is of some use to some of you. I hope you are all feeling well today and have a happy and painfree weekend. Lots of love, Dianne x x x

REally appreciate hearing from others that are still feeling fatigue or who felt it for a long time after tax.

Re the acid reflux - I find that fruit is the worst thing for aggravating it. Very frustrating as the summer fruits I absoluately love. So I have eliminated all but blueberries and bananas which seem less acidic and instead have increased my vegetables to compensate - green leafy ones are particularly good. It may be a bit of process of elimination.

I’ve had the best diet ever since my diagnosis and I still get all the headaches, pains, fatigue etc. That said I couldn’t agree more with Gretchen that it’s important. After all who knows how I’d be if I had a bad diet as well!!

I have tried lansoprazole and omeprazole with limited effect. I take that each morning but I have also had domperidone one before each meal. This not only helps with nausea but also increases gut motility so the food’s not sitting there causing acid. You can buy this over the counter (Motilium) but I think given what we’ve been through that it’s best to go via GP - also it’s very expensive over the counter. In addition my GP has just added in ranitidine at night which should reduce acid reduction - fingers crossed. She’s hopeful I can reduce down in a few months once it’s under more control.

I hate the fact I’m taking so many meds plus tamoxifen but life has been utterly miserable with the acid over the past months. I had an endoscopy which showed nothing at all and then that same night I had terrible acid reflux and a vomiting attack that lasted 4 hours. My GP says that my stomach is now just producing too much acid. It’s weird though as I’d never even had indigestion before the chemo.

Good luck all!
Elinda

Hi all,
Elinda, in complete agreement re fruit, which is a bummer cos I love fruit, but have had to reduce the amount I was eating. I also have had to stop eating nuts (not the salted variety) as they too make the heartburn worse.I might give Motilium a try, although I’ve been ok for a few days, fingers crossed this lasts.
Jodie,I’ve read one of your other threads re your good news about your test results…so pleased for you. I’m going to give bicarb a try, it’s a good old fashioned remedy isn’t it and probably works.

Sue, isn’t the panicking thing frustrating? You want to stop, but can’t and as you say once you come out the other side you realise it’s been silly!! That’s what this horrible disease does to us, any ache or pain sets me off again!!

Val,I too have problems with fingers and toes,toes in particular. I’m also in the process of losing a couple of finger & toe nails,which makes doing things and wearing shoes a bit tricky!

Cherub,Viv,Tina the amount of comments posted just goes to show what a big deal this is.I know the benefit should make it worthwhile, but it also makes me understand why some people refuse to have chemo.

One thing I’ve noticed is that none of the professionals I’ve spoken to seem to acknowledge these long lasting problems. Not sure if we are in the minority or that they are not aware?!

Anyway, hope you are all feeling fit as fiddles and have a great weekend…I’m hoping mine is going to be the best ever as Emily, my daughter, has just gone in to hospital to have her first baby & my first grandchild!!!

Love Sandra x

Hi Everyone, Hope you are all well today. Sandra, thanks so much for your kind words re my result. I agree with you about the professionals. My onc told me that I would have very bad aching joints from the Arimidex. I said I already had aches and pains from the chemo and he actually laughed and said ‘It’ll get much worse’. He didn’t offer any advice on how to combat it though, I’ve had more help from the ladies on here than anywhere else. That’s how I came to take the Glucosamine which is really helping me.

With regard to the fruit issue, I had to do exactly the same, give it up. I love strawberries, but was told they are extremely acidic, so at the time I didn’t have any, but over the last couple of months I’ve been fine with them.

Elinda, I hate the idea of taking loads of tablets as well so you’re not alone! It makes you wonder what they’e doing to your insides when you have to take so many. Horrible.

Anyway, I hope you are all feeling ‘well’ today and that you have a happy and painfree weekend. Lots of love, Dianne x x x

Hi Ladies, hope your weekends have been good…mine was lovely as our first grandchild arrived this morning! A grandaughter, named Lily, she weighed in at 5lb 5oz, mother & baby are doing well…as is the dad!!

Hope the Taxotere effects haven’t been too bad!!

Sandra