Thanks for all those comments everyone! I appreciate your feedback on how it’s going, this forum is so helpful!
I was given a prescription mouthwash on cycle 1 but luckily I haven’t needed it on EC, but if I need it now at least I have it. We are stocking up on ice lollies this weekend, my husband is doing the shopping as I am also avoiding people. We also got in a bag of frozen pineapple chunks as I read they can help - no idea if they do but worth a try and if nothing else they are good for you. And I bought bicarbonate of soda as I read that mixed into water as a mouthwash can help.
Yes I have 3 docetaxel to do. Hoping I can get through them with cannula still but I do have mild case of phlebitis in my right wrist - I had my first & third chemo in that arm so this cycle is back in the left one and hopefully there’s time for the right to recover before round 5. If not they may do left again or switch to picc if necessary but they are checking it tomorrow. Fingers crossed that as it’s only mild it will heal up.
Had my first docetaxel this morning and it was fine. No reactions which was a relief. I started my steroids yesterday, it’s double the dose I had EC so didn’t sleep much last night. I’ve had them today too and last day tomorrow. I start Filgrastim on day 3 this time, still for five days. The medications will be over earlier so I’m hoping the rough days will feel less They didn’t give me antihistamines so I assume they don’t do that at our hospital (Leicester). I was only there for an hour and a half. I’ve had a footlong subway for lunch as I was starving, thanks steroids . I’m tired but so far no headache or nausea like I got on EC. I’m expecting to wake up aching tomorrow mind you. This was my 5th chemo, 3 more to go! Only seems like 5 minutes we were all having our first infusions! Good luck to everyone else xx
Well done twinks! I got different dose steroids too, dissolve in water - one at 7am / after breakfast and one after dinner / 6pm ish. They warned me that sleep will be tricky. So I’m re-framing that by saying I am lucky I’m signed off work, I put clean fresh sheets etc on the bed yesterday so if I end up in that weird knackered but wide awake thing at least it’s all fresh bedding! And hubby taught me to cook when we got married so I won’t starve.
I think we are all having to get good at trying to put a positive spin on crap things we can’t change. Like losing my hair after always having it long. Now I’m convinced that when it does grow back I will keep it short. It’s so convenient not to need to hairdryer it for 10-15 minutes every day or so, and I always had a ponytail because I weirdly hated it when my hair brushed against my face! I should have gone short years ago! See - positive spin on an otherwise shitty problem! I could become a politician or a spin doctor after this!
I’m now watching you all move ahead of me. I still haven’t started my paclitaxel and probably won’t for at least another 2 weeks. I saw my oncologist yesterday and he didn’t realise I had an actual open hole in my butt cheek. So no chemo til it heals up. On a positive note, the lovely district nurse thought that the hole is looking better. Well done everyone who is ticking off the sessions.
Wow, that sounds grim for you. I hope you’re healing well. I can imagine it’s really discouraging to have a blip in your schedule but I’m sure they’ll restart you asap.
I start my first dox (of 3) tomorrow so have found all the info upthread super helpful. Currently using being tanked up on steroid to drive from St David’s back to Cambridge. We were so lucky to have a few days by the sea in my good week. My son’s surf instructor is 2 years out of active cancer treatment and really gave me hope that we’ll come through this time and get to a good new normal…
Oh no moomoo, I’m sorry. It must be so frustrating to have treatment delayed once you’ve started it. I really hope that it heals up soon, is it a hole they are packing with dressings? I had kerracel dressing in my boob wound hole and it did work. Keeping my fingers and toes crossed for you for a speedy recovery and getting back on track. X
They are packing it with some gel but today I got some different kind of goop. They really know their stuff though so fingers crossed it heels quickly.
@moomoo716 thats so frustrating about delayed treatment. I hope your butt hole is not in a painful place to sit and that it heals nicely.
@jenny4 good luck with your dox today, hope it all goes well.
@runnerjen I had an ice lolly last night and oooo the pleasure! Then I woke up this morning with a banging headache, a super dry mouth and an accidental munch on the most painful side of my tongue. Ive got corsodyl mouthwash but oh my that really hurt yesterday and Im not sure how much good it did at all.
@twinks77 its funny how different some hospitals are as my Filgrastim is still starting day 5 on docetaxel so I have 2 more left. These little buggers either sting really badly or dont hurt at all. I cant figure it out. Still once these two are done I’m calling two thirds of the way through.
Can you tell I’m on my laptop today as I can properly @ mention people. I just cant see how to do that effectively on my phone.
xx
I’m the same deal with 5 filgrastim starting day 5. My first docetaxel went well this morning, took about 2 hours but cannula in left wrist was fine, no reactions to the drug and I found it easier just running through a drip instead of being pushed through by a nurse. I got hardly any sleep last night with the steroids so I’m hoping that I can nap this afternoon before dinner & the next one!
Hope your mouth feels better soon. I sucked on semi frozen pineapple chunks today, no idea if it will prevent anything but it was a nice refreshing snack anyway.
Glad you also found it t ok @runnerjen hopefully it will continue that way.
I’m feeling pretty good today, thanks for asking @warmfuzzies. I’ve had no sickness or nausea whatsoever which is such an improvement on EC. On the day of the EC infusions I was always sick twice in the evening. But not this time! So I woke up today with a full tummy and not dehydrated. I suspect that the steroids are helping me feel so well today too. Just took the last ones so I think from tomorrow onwards I’ll be feeling a bit rougher. Pottered about the house this morning and just chilling on the sofa catching up on some TV this afternoon. Still have 5 days of Filgrastim but starting on day 3 this time.
Also I had such a lovely phone call from a friend this morning. One of those phone calls that feels like a hug
Hope everyone else is doing ok. Those of you with sore mouths, that sounds very painful and I hope it improves soon x
@moomoo716 so sorry to read about your delay and the ongoing treatment for the hole, i really hope you heal and the continuation of treatment runs smoother for you.
I had a rough time on my DC treatment but its so nice to read that you all that have started their D are finding not horrendous.
Even though my chemotherapy has finished im still thinking of you all. Im also finding there is still some after effects, not sure how long it will last.
Hope you all find some peaceful rest and joy this weekend hugs and warm wishes to you all.
Just in case it helps to know, my tongue is not so sore today. The nystatin is definitely helping. I think Ive found the tongue pain and the dry mouth at night the worst bits of this. I slept with a water bottle last night and when dryness woke me up I had a swig but it felt like every 20 mins from about 4am.
One more jab tonight and I’ll officially count this as two thirds through.
How’s everyone feeling?
@trix1 what stage are you at now? And what after effects are you feeling? Sorry to hear you are still suffering.
I guess its too hopeful to feel that once the chemo is over that everything goes back to normal.
xx
@warmfuzzies the nystatin i found it so helpful too definitely did its job efficiently. I found that if i spread the doses differently so number 3 was right before sleep and number 4 was when i woke to a sore/ dry mouth it helped with the need to wake up sip water and go to loo so often after.
Im now awaiting my radiotherapy planning appointment, have meet with the oncologist leading this part, who is the best person i have interacted with so far ( other than on here,and with the nurses here). I have 10days radio at a different hospital. After this will be meeting with the other oncologist agsin to go through the injections and hormone treatments.
The effects i still have, general weaknees very easily fatigued/ exhausted, have had days where i all of a sudden feel nauseous or unwell for no reason, funny sleeping, appetite and digestive system seem to be all over. I have developed this spot rash over shoulders. Hip pain unusual sleep. Most days i feel like i have a cold thats not vome out, this may the anemia and other low blood things.On top of the leg not being right using a crutch just to make sure i walk properly when i can get out for a short one. Also my mood has fallen like dissoicstion or sad numb again for no tangible reason.
I appreciate my off load seems alot but its honest, and as we know everyone is unique and bodies respond deffrently. I hope for you the residual and long term hurdles are smooth or non existant.
Love from my hot bottle and i to you all.
Xx
Hey @trix1 it sounds like you have only recently finished chemo if you havent started radio yet? I guess that may be the lowest ebb for the accumulated effects of chemo. Thanks for sharing how you feel. Its always useful to know then at least you can avoid feeling so alone when it happens to you.
Ive been a bit up and down this week. Nothing too major but one day I felt really really tired when I didnt think I should and another day I felt quite sick out of the blue.
Ive heard that docetaxel can have an effect on your mood and that some people feel really depressed due to it. Hopefully that passes.
You are so right though that we all have a certain amount of unique experiences. Thanks for the tip about the nystatin. Ive just been to the chemist and got some dry mouth spray so I’ll try that too.
Hope your side effects lift as time goes on, its a real rollercoaster!
xxx
Oh my word the docetaxel aches have arrived! What a horrible feeling. Currently dosed up on paracetamol & ibruprofen and laying on the setee but can’t get comfortable. Mouth it feeling a bit sore. I’ve done a saltwater wash but I’ll ring the hospital tomorrow for something better if it’s still sore in the morning.
Hope everyone else is ok. Can you believe it September tomorrow!? I’m glad we are past those heatwaves now x
@twinks77 the sore moth does pass but I needed nystatin to get rid of it. I don’t do pain at all so it made me miserable.
The aches are weird, they subsided for me but today we went for a walk and my hips ached like they were wider than my leg joints. Such a strange feeling. I hope it’s a side effect that disappears as I really want to get back to Padel tennis on Wednesday
September on Monday is mad but I can say that I’m finishing chemo next month. It will be 6 weeks til I’m out of the worst of the last side effects. I can see the end for the first time.
The pains have hit me too. I didn’t sleep at all last night and feel about 100. Fingers crossed that it doesn’t go on too long.
On the plus side thank goodness for cooler weather and not too many more weeks of chemo…
I’m starting to feel the docetaxel aches now too, just had paracetamol. I’m sitting on my bed with the window open, we live opposite a mere and there’s a duck quacking away and it sounds like it’s laughing at me!
I agree @jenny4 definitely glad of the cooler weather. Although I do find I’m waking up roasting in the night and have to put the fan on. Menopause I presume.
My last chemo Is 30th October so I can also say I finish next month…. Just
I rang the hospital this morning and they are giving me some mouthwash. Feels like I’ve eaten stinging nettles so hopefully it will help. I told the nurse how achy I was and she was sympathetic. I feel a bit better now. I think sometimes you just need a bit of sympathy and know that it’s a normal side effect
They didn’t give me antihistamines so I assume they don’t do that at our hospital (Leicester). I was only there for an hour and a half. I’ve had a footlong subway for lunch as I was starving, thanks steroids 
. I’m tired but so far no headache or nausea like I got on EC. I’m expecting to wake up aching tomorrow mind you. This was my 5th chemo, 3 more to go! Only seems like 5 minutes we were all having our first infusions! Good luck to everyone else xx
. We can do this 
xx
