Hi all, what a lovely day today, hope you're all doing something nice. So, I went to the hospital to get bloods done through my port today. They wouldn't do them through port as said it needs to be after 10 days and it's only 9. They had told me at last chemo session it would be fine, that guidelines had changed to 7 days. A bit annoying as I could have gone to a closer hospital to have bloods done in the normal way. On the plus side, I asked them to talk to pharmacist for me about what gp can prescibe for hot flushes, as I've had to stop hrt. They suggested a suitable medication which doesn't affect hormones (as I'm pr positive, er positive and HER2 positive). I have a phone consultation with gp this afternoon, so hopefully she can prescribe this for me. Although receptionist did ask if the hospital were sending a letter (which they're not), so hope this won't be a problem. Also have my oncology appointment this afternoon, to see if chemo can go ahead on Monday. Off out for a walk shortly and out with friends for dinner tonight, which I'm looking forward to. Hope you all have a lovely weekend. Xx

Hey,

Ah that's annoying they couldn't access your port for your bloods this week. Hopefully by Monday and then going forward it will work perfectly but sorry you had a slightly longer journey to make today. Let us know what the oncologist says later...fingers crossed for the go ahead on Monday!

That's great news that the pharmacy has suggested some medication for your hot flushes! Let us know how you get on with that...really hope it helps.

Sunshine is amazing today, makes such a difference doesn't it?! Just been out for a lovely dog walk too....definitely helps having chemo this time of year going into summer..definitely better for the headspace!

I'm feeling pretty good today, weird taste still but not nausea, a little light headed maybe but all totally manageble and had a much better night sleep now i'm off the steroids!....my body definitely prefers this TC combo...although there is part of me that is still frustrated that my body couldn't tolerate the EC...I can't help but worry i'm not having the best chemo or the strongest one but i know i have to get that out of my head...and know that i have the next best thing and that my body just didn't want the EC so i have to ust go with it...but it does play on my mind a little!

Have a lovely evening tonight and let us know if you're good to go for Monday! xx

How's everyone else doing?? Sending love and hope you're all ok! xx

I'm a bit apprehensive about the docetaxel, but going to stay positive and hope I'll do OK on that too. I think I also start Herceptin injections at this time, which I'm also a bit concerned about. Hope you enjoy your new home. Xx

Hope all goes well today Pippin.   I like you am apprehensive about the docetaxel.  I've taken comfort in knowing what to expect with EC.  

so everyone my spontaneous steak has continued.  We already have an adorable Goldendoodle Skye who is 3.  
May the weekend we decided on a little puppy - her nephew - Storm.  Hubby gets him in a couple of weeks.  I will need to leave the care to hubby due to chemo and wear gloves to avoid nips and scratches but honestly so excited and looking forward to a life post chemo 

my cousin has also gifted me an electric bike.  As you all know I have severe hip arthritis but I can cycle and the electric element will make it easier.  So happy to be able to factor exercise in to my days in the future 

positivity is the best medicine by far 

hope everyone is doing ok

xxx 

Oh this is fab news on all accounts!! 

ah a bouncing bundle of joy! Cute, what type of dog is it? That will be a nice distraction from Chemo for sure….and that’s amazing about the electric bike too. With the weather getting a bit warmer too it will be so lovely to be able to do some exercise outside. Brilliant that you bike with your hip. Oh this is a very happy message! Yay!

For those worrying about Docetaxol - I know everyone will be different but everyone I know who has done EC followed by Docetaxol has said it’s so much easier! I think the main side effect is tiredness and also neuropathy but hopefully after only 3 rounds that would be so harsh..honestly everyone has said it almost felt like a relief after the EC!

Im currently on TC and my body definitely prefers this to the EC! I was super tired and achy over the weekend so Fri/Sat we’re probably my worst days (having had chemo on Tuesday) my oncologist said those would be the worst and he was right…but all totally manageable and was fully functioning still and cooking dinner and walking etc..my mouth still has this horrid taste but I had that with EC too to maybe that’s the Cyclophosphamide? Who knows! But please, please don’t worry! 

pippin - hope you’re doing ok today and that you’re nearly home if not already! Xx

Sorry just re-read that it’s a golden doodle!! We have a 3 year old black labradoodle here! Xx

Hi NGS, all was super quick today and I was home by 3pm. That's now all the EC finished, will start the docetaxel in May, plus Herceptin injections. The nurse did tell me that people who have side effects on EC are usually ok on docetaxel and vice versa. Not great for me (although I intend to prove them wrong), but good news for any of you having issues on the EC. How lovely that you're welcoming a new puppy into your family, will certainly be a nice distraction for you. Great that you've been gifted an electric bike, I think being able to get out and exercise will be good for you. Good luck with your treatment tomorrow, hope all goes well. Xx

Hi Greeny80, super quick today and was home by 3pm. Next treatment is on a Tuesday, due to Bank Holiday. I start the docetaxel and Herceptin next time, so will have to see how that goes. Nurse did say that people who have side effects on EC are often OK on docetaxel and vice versa. Not what I was hoping to hear, but great for anyone who has had issues on EC. She did say it is a totally different chemo and is stronger. My plan is to stay positive and have no side effects lol! I asked about cold therapy for hands and feet, but she didn't say if they think it makes any difference. She did say I can try if I want to, so will think about it. She did say if I get any sign of neuropathy to tell them straight away, as dosage can be changed. Not sure if I'd be keen on that, as would want the dosage I should be having. Black nail polish was mentioned to protect nails, but not sure if I should do this while using the polybalm. All these choices is mind boggling! Glad to hear you are now over your bad days and you are able to get out walking. Hopefully it will be all good days now until your next treatment. Xx

Hi Pippin 

I had neuropathy with Docetaxel and would definitely recommend following their advice about having the dose reduced if you start getting symptoms.  If it goes ignored and gets bad, sometimes it's irreversible, so it's not worth the risk.  They had to take me off Docetaxel completely because my neuropathy got so bad (I started dropping things) but luckily it seems to be getting better now, though I still have some numbness in my finger tips, but it's manageable. I was however extremely sensitive to the chemo treatment and I know it's quite rare, so I'm sure you will be fine (realised I sounded like a proper scaremongerer there!).  I got really bad nausea on EC but was fine on Docetaxel (other than the neuropathy) except for extreme tiredness.  But quite honestly, I think my body just hated the treatment.  It was worth it though as I got the cancer all clear a couple of weeks ago and now just waiting for a lumpectomy (scheduled for 24th) to remove a small amount of surrounding tissue to give clearance.  I will also have radiotherapy after surgery and continue immunotherapy for 6 months, but am hoping life will return to some form of normality once I have recovered from the surgery.  Apparently I can't walk the dog for 3 months due to the risk of her pulling! Lord knows how I'm going to do that - others will walk her for me but I will miss our little strolls out and bonding time. 

Re nails, my nails have never been strong than they were while on chemo!  Every cloud lol. 

Good luck with your next treatment.  I hope all goes well. x

Hi Carol, thanks for the info on the neuropathy, I will be sure to mention any symptoms straight away. I certainly don't want to risk any permanent damage. I have been considering cold therapy for hands and feet, but haven't made up my mind yet. Will do a bit more research into this. I did mention it at the hospital, but they didn't have much to say about it. I've been fine on the EC and hope this continues with the docetaxel, going to stay positive. So pleased you got the cancer all clear even before your surgery. I didn't realise chemo could get it all, so that's good to hear.  Shame that you can't take your dog out walking, when you enjoy it so much. Maybe you could go along for the walk, while someone else holds the lead. I've been enjoying my daily walks, just got back from a 2 1/2 mile walk with hubby, seems to give me more energy strangely. I have been using a product called polybalm on my nails, which I'm hoping is going to limit nail damage, will have to see how that goes. It's good to hear your nails were fine. Good luck with your surgery on the 24th, hope it all goes well. Xx

Hi NGS, I just wondered how you are feeling, after your treatment yesterday. Hope you are doing OK. Xx

Hi everyone.  Third round of EC completed.  Been an emotional rollercoaster this week.  I had felt so good the fees days before I became really overwhelmed Tuesday before treatment knowing it would knock me for six again.  But I’ve picked myself up now thankfully. Back on injections - day 3 today. It’s this bit that I dread most 

I am worried about the neuropathy on docetaxel.  What are the herceptin injections for ? I don’t think I’m having this - it’s not been mentioned.  My steroids have increased though pre starting docetaxel   Once my chemo ends I will have zometa bone therapy as well 

xxx 

Hi everyone.  Third round of EC completed.  Been an emotional rollercoaster this week.  I had felt so good the fees days before I became really overwhelmed Tuesday before treatment knowing it would knock me for six again.  But I’ve picked myself up now thankfully. Back on injections - day 3 today. It’s this bit that I dread most 

I am worried about the neuropathy on docetaxel.  What are the herceptin injections for ? I don’t think I’m having this - it’s not been mentioned.  My steroids have increased though pre starting docetaxel   Once my chemo ends I will have zometa bone therapy as well 

xxx 

Hi NGS, I can understand the anxiety before starting each cycle, especially when getting difficult side effects. Pleased to hear that you've managed to pick yourself up and you sound more positive. I think the Herceptin is due to me being HER2 positive, as far as I can remember. I too am worried about the docetaxel and neuropathy. I've been fine on EC, but who knows with this next one, will just have to wait and see. Started my week of injections last night, mine start later than yours for some reason. My next cycle is on Tuesday 7th May due to the bank holiday, so probably the same day as you. I've also been told to start the steroids the day before next treatment and they've also been increased. Worried this might make constipation a bit more of a problem. Hope you manage to enjoy your weekend. Xx

Well done for getting to round 3. It's tough, mentally and physically....and i totally get it....it's really hard when you feel good and vaguely normal for a few days beforehand knowing that they're going to knock you down again...it is hard to get yourself into the right mindset for it....but evey knock is one knock closer to the end.

What side effects are you finding the hardest? I hate the injections too, i think it's those which make me feel the worst..the aches, feeling weak and then the bone pain...i also had upset tummy for a few days after as well just to add insult to injury! So far it's all manageable but id be lying if i didn't say my body feels a little beaten up...feeling good today and energy levels are back to normal though but have super dry/cracked lips..taste getting better but still not quite there..but its tough knowing that i have to do it all again..and again...and again!!..but 2 down, 4 to go and it will be over soon! 

So far i haven't got any neuropathy with the Docetaxol, i know it's early days but hopefully a good sign??..i take the extra steroids like you the day before, during and then day after...the two days after i felt pretty good..i was super productive...but the weekend i definiteky took a turn which co-incided with the jabs! I was still up and about and doing things but definitely felt below par. i don't think i have the herceptin injections either just the Filgastim ones..how many days do you have those for? Mine are for 5 days...what date is your Docetaxol? how many rounds of Docetaxol are you having? 3? Assume every 3 weeks?

Hope you're doing ok - hope you can have a relaxing weekend and that you don't feel too awful...we're here if you need to vent!!

xx

Hi everyone 

how is everyone feeling / doing ? 
I have literally hit a wall post treatment this cycle. My energy has depleted and is at zero and it is taking me much longer to recover this time

bone pain has kicked in again so strong pain medication is also wiping me out

to top it all I am also experiencing mouth ulcers which not had before

all in all feeling pretty rubbish

praying as the week goes on things improve so I can get some respite before cycle 4 and a new regime with docatexal

hope everyone else doing well xx  

Hi NGS

I'm so sorry to hear you're having a rough time.  Re the mouth ulcers, I drank green tea throughout most of my treatment and found this really helped with a sore mouth and ulcers.  It's not the best tasting, but if you can stomach one a day, it really does help. 

So sorry to hear about the bone pain too, hope the pain meds help :( 

Do you start Docetaxel on your next treatment or do you have one more EC?  As you've had such a rough time on EC, hopefully the Docetaxel will agree with you more.  Just be kind to yourself and rest and listen to your body.  Also speak to your clinicians about the mouth ulcers, they will be able to give you something for them.  It's a common side effect, so they will know how to help. 

Take care of yourself.

Carol x 

Hi NGS, sorry hear you're feeling rubbish at the moment, hope things start to improve. I too hit a bit of a wall on Saturday; with extreme tiredness. I went out for my morning walk, but slept on and off all afternoon, evening and still slept during the night. Did feel much better on Sunday and managed to fit some cleaning in. I've got my ct scan on my lungs on Friday to check nodules, previously found. Also ct scan on boob next week, to check if chemo is doing it's job. I'm starting to feel a bit apprehensive about starting the docetaxel and Herceptin next time, I suppose because I don't know how I might react to this chemo. Hope you start to feel better before next cycle and get a bit of respite from the side effects. Xx

Oh i'm so sorry you've hit a wall...it's so hard isn't it? Every time you start to feel better you go in for the next round and your body gets a beating again. I found the worst days have been the Fri/Sat/Sun/Mon after my Tuesday chemo and i'm sure it's also to do with the injections wiping me out....how many more days on injections have you got? I think they make me feel super tired, weak and then add in the bone pain! Horrid....but it will pass! Hang on in there...hopefully once you've stopped the injections the side effects will lessen...

Also re mouth ulcers i was given Difflam mouthwash which is really good and they also gave me some other pills which you dilute in water and gargle, they're called Bethamethasone....might be worth asking your oncologist if they can pescribe something for you? I had ulcers with EC and have used the difflam daily with the TC as my mouth has been pretty bad, with taste and generally horrid feeling in my mouth, ulcers etc and the difflam has definitely helped. Good to know about the Green tea too Carol! Thanks for the tip!

As Carol also says i'm sure you'll find Docetaxol a breeze after EC. So many people say it's easier to tolerate after EC so i'm really hoping this is the case with you...so hang on in there with this one and really hope your next 3 rounds you have a slightly easier ride!

You will get better so hang on in there!! Sending lots of love and strength..we're all here with you!

Pippin - Sorry you had a slightly tricky weekend, glad you managed to rest a little but also get out for some fresh air. Totally understand that you are worried about scans and the Docetaxol. It's always so hard when you have a test or something coming up...hope the week goes quickly so you can get the scan under your belt and I'm keeping everything crossed for you that both scans are good news and also that you have mild side effects with the Docetaxol. 

Take care ladies - we've got this!

  xx

Hi Greeny80, I will certainly feel better once the scans and results are over with. A nurse did tell me that if you've been OK on EC, it's the docetaxel that usually affects you and vice versa. This is a little worrying for me, as I've been pretty lucky so far. Hope you had a good weekend and are doing OK. When is your next treatment?

Really hope that's not the case with you on the Docetaxol...just remember that the oncologists etc can provide lots of pain relief if needed. Did you end up buying the mitts/socks?

and yes having tests looming over you is really hard, it can be all consuming..so hope you can do some nice things this week to distract yourself a little. Do you know when you get the results back?

I've got my next round of TC on the 30th...so hoping for a good week this week before they knock me down again. I'm worried about the cumulative element of chemo and side effects..i've got 4 more of TC to go...really hoping the side effects don't get too much worse...but i guess i just have to take one round at a time and just keep ticking them off!

Not that i like wishing time away but roll on July!!!!...although then there's radio and then hormone drugs and god knows what else next! It's certainly a journey!!!..but just have to focus on the now and yeah each round i guess, worry about the chemo first!..and deal with the rest later! 

xx

I have found some mitts and socks that I'm happy with and think I'll probably give it a go. I think the oncologist said they'll have my results at my next pre cemo consultation, which is not too long to wait, thank goodness. I too have 4 more treatments to go,  then next step for me will be surgery. I know what you mean about the cumulative effects of chemo, I've read it can take some time for your body to get back to normal. I've also got to go on long term hormone blockers, which can also have side effects to deal with. One step at a time I suppose. Xx

Hi Carol, just wondered how you have been feeling since your chemo finished, hope you're doing OK. What is the next step for you moving forward?