A consultant told me the jaw pain is an often complained about Docetaxel issue. I had it too. Jaw and ankles were my most horrific and all consuming pains. They’ve gone during the third week though.
The deal I’ve made with my consultant for tomorrows 2nd Docetaxel is;
Prophylactic treatment of mouth infection from Day 1 with 3 x Benzadymine Hydrochloride and Nystan x 2 per day to prevent mouth sealing up like last time
Omepraxole daily from Day 1 for 10 days
Lower dosage to 90mg/m.sq instead of 100 (she wanted 80 but I haggled!
GCSF at 24 hours and not delaying until the evening of Day 2 like I did with EC
3L of water per day
Temp and then paracetamol as needed throughout first week to try to be more active and not shut down so much (I’m a reluctant painkiller taker)
Try to get neutropenic sepsis on a weekday between 9 and 5 rather than needing to use A&E so I don’t get the nurse who missed the infection control module or the trainee GP who thinks you can see neutropenia.
The mouth seems to be everything. When it goes wrong, everything goes wrong due to fluids and food. My taste has just come back and week 2 was only spicy food for me or I could taste it. Sugar tastes gross which is amazing! Even crisps taste weird still. Roast chicken with soft baguette and loads of salt and pepper is nice in week two it seemed for lunch. I’ve craved protein like crazy!!!
I hope you feel better soon. I’ve still got diarrhoea going into the next cycle. Consultant said I may be stuck with it until the end as mucosa are unhappy in gut. It’s not urgent, scared to fart diarrhoea now (a little scared) though now. It’s 3 x a day runny and not painful (except when k went for Thai with a friend and stupidly had the hottest Thai Chicken Basil and Chilli dish SND ate every chilli in sight . Oops.
@isthisreal just to make you feel better…this has been my 3rd week…my good week…we don’t have stairs at home and the farm is flat. I had to meet a client in her Georgian townhouse on Tuesday and I nearly died walking two flights of stairs. I was a mess.
Oh and I officially look like this every morning before make up. Fun times. It’s nearly 2am and wide awake with steroids and the kitten is being spayed in the morning while I’m at chemo and I can barely remember the word for ‘hand’ half the time and shouldn’t be trusted with anything more than watching TV and drinking water right now.
Predict - anyone who did their score early in the year, it’s worth going on again as they’ve updated it with more modern stats (which account for longer hormone treatments and more use of Taxanes - hooray for evil Docetaxel and Paclitaxel!).
My 10 year survival rate has increased by 2% and my 15 year survival rate has gone up by 4%. Hoorah! I’m almost nudging 90% 10 year and 85% 15 year which I’ll take. Happily! Love that they point out that 5% of people would die anyway from other causes and not cancer so as long as that wasn’t my plan, my rate is only really 85/95*100 = 89.5% for 15 years. And mine was two tumours in breast, 7/10 lymph nodes, ER 8/8 and HER2 -ve and not the mountain lion with three legs and a limp unfortunately.
New Predict was exactly what my steroid addled brain needed tonight!
Good morning ladies, just wanted to let you know @swk1981 im thinking of you today, hope it goes well and it looks like you’ve got everything covered so keeping my fingers crossed for the week ahead 🩷 @pollyanna1 thank you for sharing your positive news it really helps to know what’s happening going forwards and there are brighter days ahead for us all 🩷 @gromit12 hope you managed some sleep last night and you feel bit better today ? Xxx
Our Oct17 gang stayed together on the chemo thread through surgery and rads too as gave a lot of the other threads you can do same if you want too Shi xx
Morning @swk1981, I’ve just done mine, it’s strange how we are all so different. I was er+ no lymph node involvement stage 2 grade 3. I’m 52 so think age plays a factor lol.
My 5 year is 93%, 10year 83, 15 years 73%.
I was also told yesterday I’ll be on hormone therapy for 7 years instead of 5 as new research this last few weeks suggests. I’ll be on one 2 years another 5 years. I’m getting extra 4 radiotherapy to target the tumour site as it had been very aggressive ( grade 3) and most people would have had node involvement at this stage. I’m taking all the positives lol.
@elle16 thank you, got some sleep which is always a plus post steroids! Jaw pain has eased a tad, but still popped the ibuprofen and codeine on waking! And who knows what last night’s immodium has done to the guts, but have just downed my kefir and !!!
I’ve just looked at the predict tool. My cancer sounds similar to yours @swk1981 however I’m older I’m 50. So my results came out as 5 yr 96%, 10 yr 89% and 15yr 82%
I didn’t actually use the old tool so not sure what the difference would have been!
I’m also having immunotherapy as well as hormone therapy and radio so maybe that will bump it up a bit too!
@swk1981 thanks - I’m 8mg too and it’s Dexamethasone (if that’s how you spell it). A couple of you seem to take it in afternoon at lunch so I’m defo going to query it again as someone else in my team told me to take it at night rather than lunchtime (after 2 other people told me other times😂) but thinking I won’t get any sleep if I do that and if it’s still effective taking it earlier in the day then that would be better
@hc1973,hope all is good with you I managed more sleep this time than any other surprisingly. Although other side effects kicked in within a few hours of treatment. Normally day one I’m hungry very nauseated from I left hospital. My final weigh in yesterday and I’ve managed to put on 8lb in total:see_no_evil: I’m overweight as it is . I think it’s the diet of chip butties and ice cream. Didn’t get that silver lining of weight loss from chemo lol. On a positive note, once this is over, I’m going to try healthy eating and increase exercise. (Slowly) my body’s got me this far, maybe time to repay it.
@belle1 when I was taking it for my 1st Docetaxal I had the same drug and dose and was told 8am and then 1pm otherwise no chance of sleep! I’d definitely query it. X
@swk1981 thanks for that! Makes me feel better that other peoples step-counts are also abysmal .
I will be taking a leaf out of @pollyanna1 book about starting some sort of exercise regime to get into better shape when this is all over. I can barely get child-proof lids off bottles now! I’m still in my 40s for god sake! I really feel like I’ve aged decades with this treatment. I’m still in the mire of round 5 side effects so not feeling as upbeat today!!
I was full of good intentions when I was diagnosed but unfortunately surgeries and chemo totally wiped me and have left me zero energy. I’m starting with baby steps as I know when I go full throttle ( not that I’ve the energy now) I give up too easy. Be gentle we’ll get there. Xx
@belle1 - I take 2 x 8mg steroid tablets for three days (starting day before chemo) one at 8am and the other at 4pm. Tbh, it didnt’ affect my sleep even though the last one was later in the day! @pollyanna1 - don’t apologise for sharing your experience! We are all delighted that you have reached the end of chemo and are grateful for you sharing the next part of your journey with us. @swk1981 - I really hope your chemo went well today and that they have put everything in place to try and manage the awful side-effects that you had last time. @gromit12 - glad your enjoyed a Midsummer Nights Dream and that you didnt have to dash to the loo! Hope you continue to feel better each day.
I’m off to the hospital this evening to have an x-ray on my PICC line. really hoping it’s OK because I don’t want to have another inserted - or to have to manage without it!
Emma x
I’ve had a weird skin reaction to my antibiotics so I have wee itchy bumps in strips down my arm that are like a rash but not actually a rash lol. They gave me special moisturiser and I’ve to take antihistamines and if it doesn’t settle or gets too annoying I’ve got back up antibiotics to switch to. On the plus side she was happy with the progress so far in my infected arm as the redness is more concentrated around the vein now rather than my full arm and it isn’t as swollen. I’m soooo itchy I’ve got to just laugh at this point!!