I feel so much better today after just paclitaxel. Bloated a bit but hit water bottle sorted it. Sorry @buggeringon it’s so frustrating, hope your iron infusion makes you feel so much better. I love the list idea, I want to climb a mountain the Lake District where I grew up. I want to go into London and walk along south bank. And now I also want to eat chocolate dipped cherries! @anim4l YES!!! Great news about your uninvited guest, such a fantastic feeling xxx I love my polybalm it was expensive but I’m still on nails tube. Saving toe tube for hands too. Thanks @bellbert it really was the week from hell last week but I’m lucky that was the first time xxx I feel so much more energy today, even went for a walk after chemo with family. @frunca that’s a nice milestone too xxx great news about hair, I’m carrying on with cap for now as it still isn’t obvious (except to me). @dizzy3 that’s wonderful news! And good luck with US!! It’s so reassuring and makes all this madness worth it to some extent xxx @molly.m what a gorgeous photo, so glad you got out for date night xxx
Love to everyone tonight, that was 8 today for me, almost there…
Evening. Round 3 of 6 done. Half way through. All went ok, had to slow down my carbo a little as I got a lovely red line up my arm as it went in. But otherwise a nice day again with lovely nurses. MRI at 8am tomorrow/today.
Got some emla cream for my injections, hoping it will curb the sickness feeling I have placed around them in my head. Also going to keep on top of my nausea tablets this time now that another GP has put my mind at ease about them, think my original GP must have been new, he scared me off taking them and didnt want to prescribe me anything because Im on chemo, even tho I was sent there to get stuff.
Had a visit with a lovely lady at Mcmillan after chemo to chat about money, ended up in tears just chatting about how I was feeling over the weekend and my worries. Really helped voicing it out. My mum cried too and I felt horrid. But I had to get them out otherwise they would eat me up. Think it helped my mum understand how I was feeling a little better. Shes very stoic and tells me to not think like that and such, whereas the lady showed she understood the feelings I was having but helped me to focus on the now, and the little wins of now. I needed the air hug of words rather than having my words hit away with firm positivity.
@buggeringon sorry about the mess up but glad your getting your infusion, I hope it helps.
@bellbert I’m sorry you still havent heard anything. When is your next one. Let the nurses know when you get there and have them sit with you. May help you more if your worried on the day to have them closer to you at hand.
@emsd2025 thanks, your list sound brill and I think I’ll add volunteering to my list too. I’d like to raise some money if possible with my artwork.
@story1 so glad all went well, and that your feeling better. I love your list too. I want to get out on more walks. I love nature and luckily my little girl does too. She also wants to do horse riding so Ill be adding that on too and thankyou. Hope the rest of the week is easier for you this time
Good morning, best of luck with the MRI today. I use Emla cream prior to the injections and it does take some of the anxiety away. I found I had to leave it on for over an hour for it to be effective. I start the new round of chemo next Monday, so if I don’t hear back ( which seems likely now), I will be starting weekly Paclitaxel for 12 weeks. I shall do as you say and make sure they know how worried I am about reactions and ask if it can be administered slowly. Like you, I have just a bit of thin wispy hair now, all the darker colour, brown and grey all went, just white stayed for some reason, mind you, if it comes back white rather than steel grey, I shall be very happy Jane xx
Jane, I remember reading that you’d asked for the alternative paclitaxel. Did you ask at your treatment unit, or the oncologist directly at an appt? The reasoning ask is that I have found I get answers when I call the oncologist’s secretary, but I don’t if I ask the nurses to convey the question from the treatment unit. X
I sent an email and it ended up with his private secretary, who emailed me to say that she would forward it on to his NHS secretary at my hospital - that was two and a half weeks ago and I have heard nothing and am due for the chemo on Monday. Perhaps I should phone his NHS secretary today… thank you, I will do that Jane x
Hope everyone is well. I’ve been struggling with mouth ulcers - on my tongue- have been prescribed gelclair for it to coat them - I’m hoping they will settle down. I’ve also been prescribed flucanozole as the oncologist thinks I might have oral thrush . Bit annoying as I don’t want to take antibiotics if I can help it and I don’t see any thrush - but he’s the consultant so presumably knows what he is doing.
My 4th and final EC is on Friday - I have definitely not bounced back from the 3rd one - the dose dense fortnightly regime is catching up with me and I’m tired !
I did some mindfulness meditation this morning - I’m still in a positive mindset but want to be using the time off work constructively. I was so tired I nearly fell asleep. I went for a walk with a lovely friend at lunchtime, which helped the tiredness but I did have a nap this afternoon!
Chemo is definitely catching up with me and I’m not as active as I was - the dry cough means my lungs feel swollen,
I’ve used Emla cream with my daughter - it comes with a special dressing/ plaster that is non absorbent so holds the cream next to the skin for an hour - the doctors said if we run out of dressings to use cling film
The oncologist did say that most people find paclitaxel easier to tolerate so I’m hoping it will be ! One more round of EC then I start paclitaxel on 21st November…
@emsd2025 - yes- 12 weeks of paclitaxel
I have suzipad ice socks and gloves for it but need to look into compression socks and gloves too - I already have a little neuropathy in my hands so keen to avoid more…
Totally get it. I got both mine from Amazon and ok ish so far. Pacli has been ok ish for me but I’m very tired today. Very much not looking forward to EC though you’ve smashed it!
@emsd2025 the EC has not been as bad as I feared - the hospital have been good at prescribing things to help with the side effects .
As it constipates me I take some laxido the day before and day of the infusion, and I was fine on the first 2 cycles - the side effects only kicked in particularly on the 3rd cycle…
Sorry it’s creeping up on you @anim4l but it sounds like you’re on top of managing each stage. Why do you think some of us get the paclitaxel cycle first and others the other way around? I finish 12 weeks of tax/carb/pembro on 2nd dec then I do EC for 3 months. I’m keeping an open mind, some people do better on one or the other I can’t see any patterns. I’m sure your sister is incredibly helpful too x
I’m having a good week. I was out and about today and gardening yesterday. Did some Christmas shopping thinking I’ll struggle nearer the time. Picked up some chocolate covered cherries from Holland & Barrett! Some lovely PJs from Fat Face, I don’t normally wear them but I can see me snuggling down in the sofa more this Christmas! It’s my birthday on Christmas Day and we usually spend it away so i don’t have to look after everyone, so this year will be strange but I intend to make the most of it and enjoy being looked after.
My joints are achy today and I found some malt and cod liver oil in Holland & Barrett, I know it’s not for everyone (I used to eat it by the spoonful as a kid) but I love it and it didn’t upset my stomach so that’s a win, full of vit A & D.
Hugs to everyone and a reminder that we all joined this forum back in September and now look at us managing our side effects like pros xxx
Rachel
I’m feeling quite buoyant today. I’m now past the half way point of my chemo! Yay! 6 of 12 done.
Would be dancing, but am cream crackered- think anaemia has got worse in last few days. Getting woozy just moving between lounge and kitchen. BUT - iron infusion tomorrow morning, I’m really hoping my energy levels pick up quickly.
Last chemo is due on 23rd of December. Am hoping I’m well enough to enjoy Christmas Day xx
@story1 I don’t understand how it is decided whether to do EC or paclitacel first, it seems to vary even in the chemo ward in my local hospital.
The chemo nurses said that different hospitals use different taxanes and paclitacel is the standard one at my local hospital. It’s extremely convenient that my local hospital is 10 minutes away given how frequently I am there, but I only moved out here after my daughter was born, previously my medical treatment had been at university college hospital as I was living in central London and I have more confidence in the standard of care at London teaching hospitals. I am planning to move back to London when my daughter leaves school (in 8 years) as I prefer city life (I moved here for my daughter to grow up with extended family which has been a godsend).
I’ve found a heated throw really good for achy bones - I only had that in my first round of EC where I wasn’t taking loratedine before the filgrastim injection.
@buggeringon - congrats on getting to the half way point! Good luck for the iron infusion tomorrow. I did ask my oncologist about anaemia and whether it was worth having high iron diet (I’m drinking spinach juice daily and eating lots of spinach too), he said that they don’t prescribe iron tablets and that it is the chemo that causes the anaemia…didn’t make a huge amount of sense to me…
I’ve recently done a bit more research about boosting iron levels through diet (for veggies). If boosting from plant sources - you need to be eating foods rich in vitamin c at the same time. Plus have decent vit b levels, so you can make new haemoglobin. Best veggie option is mangos of all things - high in iron and vitamin c. I think you’re already taking vit b anyway? And you have marmite regularly, so you’re probably ok on the b vitamins.
Wish I’d been pointed at mangoes by the treatment team - whilst my pre chemo levels were ok, they were at the lower end. Chemo is known to cause drop in iron - as a veggie I could have been defending against anaemia from the start. It’s a predictable side effect that could be easily mitigated. Puzzling why nutritional profiles and tailored recommendations/supplements are not part of chemo care.
@buggeringon - yes I find this maddening, This is exactly what I was asking the oncologist on Monday - given chemo can cause anaemia should I be loading uo with sources of iron in my diet - will this reduce the risk of anemia? I didn’t get a sensible answer.
my oncologist is anti supplements but I think this is because of lack of evidence of how they are in cancer patients and fear of putting strain on the liver. I was aware that iron needs to be eaten with vitamin C. The only supplement the oncologist has allowed is virgin d, in trying to get everything else through diet …
and I think I’ll add volunteering to my list too. I’d like to raise some money if possible with my artwork.
xxx