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September 2016 starters

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Re: September 2016 starters

Jo - can't claim to have invented 'Tax Trots' nickname. It is a term used by other ladies on earlier monthly threads, so I don't know who first invented it. Having experienced it though, I thought it was a good way of describing the effects! I never had it immediately after the infusion, it waited a few days before making its presence felt.  I did have a close shave once while out shopping, only just got to the loo in Sainsbury's in time!

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Re: September 2016 starters

Hi OldDawn 63

 

Thanks for the advice,🎉Well done for getting through chemo🎉 (I Soooo wish I was at that point).

 

Day 12 and have only just stopped having the (I like your nickname ) 'Taxs Trots' and things in that department are still not back to normal.  I just hope that this Side effect waits until I'm home (nothing like your own bathroom) and not the chemo lounge with infusion 2 😬.

 

wishing you all the best with the next step in your treatment (you've got through chemo 😃🍾) lots of love Jo xx

Member

Re: September 2016 starters

Hi Truey,see see,rosiero

 

Thanks for the advice I was beginning to get myself into a bit of a state.

I went for my picc line flush today and bumped in to the oncologist and explained what had happened re SEs (as I didn't have an appointment booked with oncology until just before my last T) and he tapped up my notes on the pc and said for the next T he would reduces the levels slightly (I asked if that would affect the effectiveness of the drug and he said no) still feel nervous but (sore) fingers crossed it will be ok 😬

 

So sorry see see to hear about your much loved dog, I have an elderly Labrador so I know how much apart of the family they are. 💕💕💕

 

Sending you all a big thank you (and see see a big hug)😘

 

Member

Re: September 2016 starters

7oanne - I've had all three of my T (today is Day 17 of the final cycle), and each one has been slightly different, although they all followed a similar pattern. I don't think it is possible to know whether your second T will be worse than your first, as everyone is different. I would say that on balance my T cycles got progressively a bit worse each time, and this last one has definitely been worse than the previous two in terms of fatigue, neuropathy, mouth/ throat problems and skin problems, but this is probably because of the cumulative effects. However, some SEs have not been as bad this time, in particular the cough, the 'Tax Trots' and the bleeding when going to the loo has not been anything like as bad as on the previous two cycles. At least I didn't end up in hospital at any time after having T, which I did after two out of the three FEC infusions! All you can do is prepare for the worst as best you can Having had one, you will know roughly what to expect next time, although like me you may find the SEs kick in a bit earlier and last a bit longer. Sorry I can't offer any better advice, and hope your next T is not as bad as you fear. Sending you best wishes. 💙💚💛

Member

Re: September 2016 starters

Hi Bluash - thanks for your good wishes and advice on operation and radiotherapy and sorry for late reply to your post of 25 December. Hope you had a good Christmas. Ours was quiet but at least I managed to cook and eat the Christmas lunch!

Member

Re: September 2016 starters

Had my penultimate chemo today with the last one scheduled for fourth January 💉🤕😗😦😀

 

Got through Christmas ok but didn't quite realise how tiring having visitors is! Also we had to put one of our two dogs to sleep on 23rd Dec. She was my first pet so that didn't help. 😢😪🐶🌈

 

I found out today that I'm having 3 weeks off after chemo and then 5 weeks of rads (spreading the dose as I've already had my reconstruction). I'm also starting zoledronate injections on Friday to protect my bones as I'm post menopause because of a hysterectomy some years ago and to stop the cancer spreading to the bones. I will be starting hormone therapy when rads start as my cancer was very heavily oestrogen receptive. 

 

SO LADIES AND GENTS, LIGHT IS VISIBLE AT THE END OF THE TUNNEL. 😃🚴‍♀️🥁💉😃🎉🍷😎

I hope you all get to see the light of the end of the chemo train / tunnel soon. Surgery was easy compared to this and everyone tells me rads are much easier than chemo. The hormone therapy may be a challenge but I'm hoping that a return to work will be on the horizon soon and that will take my mind off things.

 

I'm also planning to do the HOPE course run by MacMillan which comes highly recommended. It's a weekly course for six weeks (two and a half hours a week). It's group based and helps you refocus once treatment is ending. 

 

Sorry this his was a long post - it's the energy from steroids .....

 

Cathy

 

Member

Re: September 2016 starters

Hi Jo,

I had some very similar problems on my first T cycle. I found it difficult to keep my temperature down and on day 5 ended up in A&E and had IV antibiotics - luckily my blood tests came out normal and my temp reduced so I wasn't admitted. I also had really bad bone and muscle pain, particularly in my back which paracetamol didn't touch and had a couple of days in bed. I also had an itchy skin rash on my neck but got prescribed some cream and have been successfully using it to keep problems at bay. 

 

However T2 was very different. My oncologist suggested taking pain killers a couple of hours before the first injection and that some people had found it best to do the injection just before going to bed instead of early evening as I had been doing. He also prescribed codeine but I only took a couple as it makes me so constipated even with the fabulously named laxative Laxido! My main problem was feeling very very tired and having horrible tastebuds. So this last T I plan to just take paracetamol in advance of the injections and wear light clothing to keep cooler.  I have much longer morning and evening routines making sure my skin is well hydrated and using lots of really good nail oil and hand cream and of course mouthwash which has kept ulcers away but not helped with tastebuds - I think only time will improve those. 

 

So T 2 was very much easier and also it helped I think as at least I had an idea of what I was up against and how different it felt from FEC. Everyone is of course very different but I hope this helps you to feel less worried.  

 

All the best,

 

Rosie xxx

 

 

Member

Re: September 2016 starters

Hi 7oanne,

 

I too was poorly with the first Taxotere and had 24 hours in hospital with a temperature and IV antiobiotics. Because my bloods were low and I have another autoimmune condition I was changed to Taxol which is administered weekly and is tolerated better.

 

I have felt really rough at times even on this but had no more temperatures or admissions to hospital since. My blood counts have been so low they considered a transfusion at one point and I've had a couple of separate weeks off to recover from doses and seen the oncologist a couple more times than planned. My fingers and toes are also numb but not painful. 

 

Each case is individual and you need to honestly answer the questions you get before chemo to help them decide if you are fit enough for your injections or whether they need to consult the oncologist. I would also suggest you talk to your breast care nurse about how you're feeling. I'm really lucky that mine is also qualified to work on the chemo unit so she's very well informed about side effects etc. 

 

Hope this helps

 

Good luck and hugs

 

Cathy 

 

 

Member

Re: September 2016 starters

Hi Jo,

 

I started in the last days of September and am now in my 2nd T cycle. Like you, I was wary after the first T because I had really bad fatigue and bone pain from the Filgrastim. I had the 2nd T on the 21st and so far so good. It has been better up to now. 

 

Don't want to tempt fate but the bone pain was controlled and although the fatigue is bad, I have felt a bit better today on D8. No huge gut issues and only a slightly sore mouth. The worst has been the awful taste disturbance but I have been eating - though not very healthily!

 

So, though I know we are all different, I just wanted to let you know that the 2nd T is not inevitably worse than the 1st.

 

Wishing you minimal side effects next time. Good luck! 🍀🍀

 

Sue O xx 

Member

Re: September 2016 starters

Hi Everyone, 

I hope you are all doing ok and looking forward to finishing your treatment.

I'm actually an October starter and had my first T cycle a couple of weeks ago. I didn't take well to it and ended up in hospital last week for a couple of days with a high temp (just before Christmas). They brought it down though and I'm now on antibiotics. I also had sore nails, the runs and an itchy rash on my chest under my neck. 

Because of that I am petrified of the next T cycle (next week) as I am worried what will happen. The hospital oncologist said that I wasn't well due to the change and overlap between the FEC and the T cycles and my hubby says that it may not be as bad next time, but I have also heard that the second T cycle is worse than the first one. Is that true?  Have you been worse on the second T cycle compared to the first? (I know everyone copes differently).

I'm starting to get palpertations just thinking about it!

Can anyone give me advice?

Jo xx

Community Champion

Re: September 2016 starters

Dawn I am so pleased at your news. Surgery at least a lumpectomy and rads are easy compared to chemo.

For the surgery I only took pain killers the day after I came out (I was in overnight) but was given loads of them. The rads are nothing - even with boosts and I had 8 boosts. Just keep applying cream 2 or 3 times a day but never n the 3 hours prior to treatment. Mine were always at around 9 am so I did not put cream on in the morning. I put it on in the changing room after the rads, then again at about 3 pm and again before bed. I can recommend a cream called Biafine.

Member

Re: September 2016 starters

Thanks Aine and Auntienanna. Aine - sorry to hear of your problems with feet and hands and hope this does ease off soon. Auntinanna - sorry you are still being sick occasionally, but at least they seem to have got the nausea under control in time for Christmas. My sore throat is gradually easing now and the cough hasn't been so bad, but (perfect timing for Christmas!) I have an ulcer on my tongue so I'm applying the  Bonjela and hoping it will soon go! I saw the surgeon yesterday and he confirmed that the tumour is still there and visible on the MRI close up, but is now very small. I have therefore been booked in for a WLE (lumpectomy) on 19 January. Now that is sorted out we can focus on Christmas! We did the food shopping yesterday after we got back from the hospital. Unfortunately, this wore me out, but I slept late this morning and feel a lot better now. There's just the two of us having Christmas dinner at home tomorrow, so it doesn't matter if I feel a bit rubbish. We are planning to see friends and family next week, by which time I should feel more myself. Have a great Christmas. XXX

Member

Re: September 2016 starters

That's fabulous news Dawn, you must be thrilled to bits.

I am on day 10 of cycle 5 out of 6 of chemo and starting to feel a bit more like. I have been quite poorly this cycle, I had to go back into hospital on day 1 because I couldn't stop vomiting, I couldn't even keep fluids down. Luckily a stronger anti emetic did the trick and I wasn't dehydrated enough for an overnight stay. It has taken longer than usual to pull round and I still randomly vomit but I think that's more caused by the excess mucus that is bothering me still.

I have managed to get everything ready for Christmas though. My sister, BiL and 7 yr old niece arrived today but they have booked a cottage to stay in so I'm not woken at 4am Christmas morning! Luckily my niece thought it was hilarious that Auntie Nanna has no hair "like a baby" and my sister was relieved that my eyebrows looked quite natural and not like a 15 yr old's slug brows, lol. She is also jealous that I don't have to shave my legs - as I said such horrible treatment needs some perks!

I saw my radiotherapy consultant today, just an initial appointment to explain what happens next, SE's, to answer my questions etc. I found out that I will have a booster week of rads, purely at the site of the tumour, after the standard 3 weeks because I'm under 40 (or at least I was when I was diagnosed, I've had a birthday since then) which was news to me. If I find the rads less bothersome than chemo it will be a necessary evil and it does reduce the chance of recurrence in 20 years or more to 1-2%. I just can't wait for all this to be over and to stop feeling nauseous and tired all the time!

Anyway I hope you all keep well over Christmas and enjoy your celebrations, however and whoever you celebrate with. Merry Christmas 🎄🎅
Member

Re: September 2016 starters

Old Dawn that is really fantastic news and has made my day brighter!!!

This is the kind of news that a lot of people are hoping for and makes all this treatment seem justifiable.  The medical team must have been delighted for you and your family must be thrilled.

 

I am on day 12 of Cycle 5 T.  I have got over the worst now and expect to feel a bit better every day for the next 9 days.  I have had fingertips and hands giving me bother on cycle 4 and this one.  It gets worse about day 5 and eases off bit by bit.  I feel as though I have been scrubbing floors.  My hands feel swollen and tender (they are not swollen) and I can't even touch hot water or anything hot.  Everyone says its a normal SE and to take Paracetamol.  My heels are sore so I wear trainers - can't stick boots or shoes.  Some have told me your big toenails may fall off and the skin on the soles of your feet may peel off but it is not sore!!!  I don't think this will happen to me. 

So don't worry it is normal and will ease off.

I asked my Consultant should I reduce the Docetaxyl to 80% and she said if the soreness had eased off by the end of each cycle then no.

 

 

Also ....i got codeine this time for the aches and pains and it worked brilliantly.  I recommend it.  Only thing is that it causes constipation so I only took it for 24 hours for the worst day.

 

For those of you on the same time scale as me.......I consider this to be my last cycle.  Cycle 6 on Jan 3rd is the last one really but I am going to drink prosecco every night....and don't care how bad my SE's are...everyday is a step into the future and getting back to a normal life.  I really forget what it was like to have a life and not to feel nauseous and tired.

 

The last point I am going to make is very important....check out your life insurance policy against your mortgage and you might find you are entitled to a sum of money.  I did and got good news!!!

 

Wishing you all a very pain-free and relaxing Christmas break.  Carpe diem

Aine

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Re: September 2016 starters

Thanks for your messages RosieRo, Worcester Warrior and See See. Hope you all have a great Christmas as well. XXX

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Re: September 2016 starters

Dawn - I'm so delighted for you. What a lovely Christmas present! Have a lovely Christmas. Xxxx
Member

Re: September 2016 starters

Dawn,

 

That is brilliant news, I am so pleased for you.

 

Wishing you a wonderful Christmas and all the best for the New Year.

 

Hx

Member

Re: September 2016 starters

Hi Dawn,

 

FANTASTIC news!!! 

 

So happy for you. 

 

Have a great  Christmas and thanks for all your contributions and support. Will probably catch up with you on the rads thread next year xx 

Spoiler
Smiley Happy
Member

Re: September 2016 starters

Evening all!

 

It's gone quiet again on this thread, hopefully because you're all so busy in the run up to Christmas, and have much better things to do than post on here! I certainly hope it isn't because you are suffering too much with SEs from your last infusion, and I also hope no-one has any infusion scheduled for this week.

 

It's now Day 7 (actually Day 8 when posted!) of my last cycle. The usual T SEs (fatigue train 🚂, sore mouth and tongue👅, sore/ swollen throat 👄, dry cough and funny taste) are now well underway, although the red face and hot flushes 😳 and 'chemo brain' 😵 are not as bad as they were at first. They've now been joined by a new SE I didn't have on the first two T cycles: peripheral neuropathy (pins and needles and numbness in my fingers and toes), although thankfully tonight it is not as bad as it was, so hopefully it will eventually go away. It's difficult enough doing household chores wearing rubber gloves, without having numb fingers as well!

 

But today (Monday 19/12/16) I also had some good news, which has cheered me up a lot. I had an appointment with oncologist this afternoon, to review the MRI results and talk about the next stages of treatment. Arrived at hospital in slightly grumpy mood (dry/ sore throat and cough, also nearly late because got stuck in traffic 🚗🚙🚚🚛). When we got in, we were seen quite quickly (usually they keep you hanging around for ages!) so it's a good job we made it to the hospital just about on time. Arrangements have been made for start of Herceptin injections on 9 January, and for post-surgery appointment in February to sort out radiotherapy and hormone therapy.

 

We were also shown the MRI scans taken last month on a screen, and the tumour - clearly visible on the previous ones taken in August - is nowhere to be seen (at first I panicked when I saw fuzzy areas in both breasts, and felt such a fool when I said "what's all that" and he replied "that's normal breast tissue"!)! And this shows the position after only 5 chemo cycles. So despite all the ups and downs of the chemo, it has been worth it and the poison has done its work. 🎆🎈  We will be seeing the surgeon on Friday morning to fix the date of the operation in January, which we now know will almost certainly be a lumpectomy. Can't think of a better Christmas present. 🎁 Even if Christmas lunch consists of turkey casserole and yoghourt because that's all I can eat, and tastes like cardboard...

 

If I don't get chance to post again before the holiday is upon us, I am sending you all lots of hugs and I wish you all a happy and SE-free (or at least SE-lite) Christmas, with news as good as mine, lots of good company around you (so much more important than all the material stuff), and food and drink you are able to enjoy despite what the chemo has thrown at you. XXX

Member

Re: September 2016 starters

Hope it isn't thrush, Lisad, and glad you have managed to get a doctor's appointment tomorrow (a major achievement!). Hope he gives you something to clear it up and it is better by Christmas.