Side effects have been better this week (3rd weekly Paclitaxel) am of course now 3 full weeks since herceptin, so that may be a factor- we’ll see next week as it’s an herceptin week.
Neuropathy is much improved- I forced myself to really rest for first 3 days, whilst taxol in body still. Quite hard to do when the steroids are making me feel like I can get stuff done! Also, ate lots of marmite, eggs and chia seeds to help nerve health. Did an hour of exercise on day 4( gentle, am getting a bit woozy/dizzy - so lots of pauses and a stick for balance) then lots of rest followed by a top to toe pamper - including a lot of massage to hands and feet.
I used the suzzipads for longer at treatment, and wore compression socks - so also a possible factor.
This week very minimal tingling in hands and a bit more still in the toes but no leg or arm pains (went unblanketed at treatment).
Onco appt tomorrow, am hoping she ok’s d3, as eggs every day is already wearing thin and isn’t that helpful at sluggish bowel points of cycle.
Overall, generally a bit more tired despite rest - but ok, am just pacing myself.
Enjoyed my walk on seafront yesterday and spent a chunk of time shopping (ffp2 mask firmly on) - really enjoyed the change of scenery and ability to pick my own treats and also made a start on Xmas shopping- so a good week!
So glad we have this forum and am in awe of so many of you. We are a tough bunch xxx
@buggeringon - glad to hear the neoropathy is improving in this cycle.
I was expecting today to be my tiredest day in the cycle and it been - I went out this morning with my daughter and then dropped her off with my mum who has visitors wishing us a happy Diwali for a few hours - I’d planned to go for a nap at 2 but she came back pretty promptly so I’ve powered through but am planning an early night tonight, in preparation for my MRI first thing,
I’m vegetarian and also on lots of marmite, chia seeds and eggs - I’ve been taking a laxative powder before my chemo day which I’ve never needed to before, I mentioned to the chemo nurses and they have prescribed laxido powder for me , I’m mixing chia seeds in kefir each morning.
@caroline_w_uk I’m on Docetaxel & Carboplatin. I had 2 episodes of diarrhoea cycle 1 - day 10 & 15 and 2 episodes (today) cycle 2 - day 5. 1 dose of Imodium did the trick both times cycle 1 and I’ve been ok for the last 5 hours today! I’m hoping that’s it.
3 days into Filgrastim injections and I’m not as tired and achy as I was cycle 1, or I’m getting used to it!
@dizzy3 glad things are settling down with the injections for you. Long may that continue
@emsd2025 good luck today. Hope number 4 goes well I will be thinking of you
@buggeringon glad to hear the side effects are improving and hope the neuropathy is still improving for you. Shopping therapy is a great idea!!
@anim4l good luck for your MRI today. Is that a routine scan during the treatment? What a wonderful loving family and support network you have around you. Sausages and s’mores I am very jealous!
@caroline_w_uk so sorry to hear the port fitting was not great for you. I hope things are improving for you now and the reduced medication is working. Good luck for this week and hoping it is more comfortable for you.
@story1 hope you managed to get out over the weekend and enjoy some fresh air. Good luck with getting the right balance for your diet. I seem to be on a constant balancing act between diet and the walking I am doing. Hoping you had a better weekend and things improving.
Good luck to everyone having treatment this week. Number 4 for me and @emsd2025 today Love and hugs to all.
Morning all - I am definitely in the early wide awake club! I usually have to drag myself out of bed but I was asleep by 10 last night so hoping this change lasts.
I had a baseline MRI before I started chemo, I am now 3 weeks into chemo and have an MRI this morning to see if the chemo is working - I am very hopeful. I’ve not been too bad side effect wise but the chemo is definitely causing changes in my body - I think I’ve lost about 50% of my hair on my head - but evenly so far. I’m hoping the shedding will complete soon as the mess is unbelievable - and I’m having to wear a shower cap to cook to prevent Haur getting in the food - I look like a school dinner lady!!
My skin is really dry - I’ve been wearing sing cetraben ointment on my face, hands and feet - it is expensive but it’s really working to keep my skin from peeling.
I’m seeing the oncologist at lunchtime - it looks like this is going to be a fortnightly thing - I did ring to try and change the appointment to a nurse instead as I don’t have any issues for the oncologist so I’m hoping they will do that as it’s a waste of NHS resources as at this stage I’m feeling fine and the mri results won’t be through - I will report back.
Tonight is Diwali . Normally I would be celebrating with my family but for safety I’ll stay at home and video in and join them for their prayers. - we did this during the Covid lockdowns .
So I’ll collect my daughter from holiday club at 4.30 and as soon as it gets dark we will light up our house, then she will go to my mums at 5 for prayers and I’ll pop round afterwards to join them for fireworks in mum’s garden and to eat my mum’s legendary samosas! we can’t do it in my garden due to my neighbours all having dogs so mum’s garden it is.
My daughter and I don’t like traditional Indian sweets so we are starting a new tradition and have ordered a Diwali cream cake from a local bakery - it has ferrerro rocher on it which she loves (and are a really popular gift at Diwali - we are gifting a box to each of my siblings) so she’s going to be high on chocolate tonight! I’m so very grateful to be feeling well and so grateful my family are near so we can still celebrate. The celebrations start when it gets dark so I’ll have a nap this afternoon after the oncologist to prepare…
Morning everyone, had a gorgeous morning at Wimpole, they were setting up for Halloween so the decorations were brilliant, I did a photo shoot of some of my books for social media, I’m trying to keep up with content and my podcast as much as I can. @cathie2 struggled a few times with diarrhoea and a very plain recovery diet is working for me, I’ve cut out inflammatory foods like wheat etc and it seems to be working. My gut was really unhappy but seems to have improved with things like rice, steamed veg/pots, banana (godsend @caroline) eggs, cooked apple and gluten free stuff, coconut water/milk, only drinking camomile/mint/fennel tea- oh man how I miss coffee!!! Hope that helps. Also I know we’re told to take loratadine for bone pain but I switched to cetirizine hydrochloride antihistamine bc it’s better for gut and liver and I have only had mild aching. Jane @bellbert very interesting about injections I only get 1 on tc+pembro cycle but on EC I think they give more. @cridders those first 3 days on steroids I’m on Amazon all night!! I’ll definitely be trying the sox and mits on EC. I’m also half way through first round xxx good luck today, it’s a great milestone xxx @anim4l happy Diwali, those treats sound amazing xxx @emsd2025 when is the big day? Gorgeous photo of pumpkin picking.
Good luck @cathie2 - we’ll be a quarter of the way through after today. I always get a bit nervy before though. Thinking of you all too ladies - this forum is great!!
Hi @story1 that sounds fun! We’re getting married on Halloween (it was the only day that worked due to half-term) but feels appropriate too . What podcast do you have @story1?
Just been for an ultrasound and my lump has shrunk from 30 to 22 and the profile has changed from a round lump to a flat disk! Ultrasound lead said it was “a massively positive response”.
Had a little cry as can’t remember what is like getting good news!
Feel like poop so heading back to bed but at least I have a big smile on my face and know whilst it’s horrid it is doing it’s job!
@cridders - brilliant news. Hope your heels are better too.
@anim4l Happy Diwali, that sounds fab. Hope your meeting with onc went well.
@cathie2 - I am very impressed with how you tag everyone in with a relevant message (I try, but fail). Hope your treatment goes well this week.
To everyone- best of luck for this week, we are another week closer to this all being done.
I met with my onc today (phone consult). She’s given the ok for me to take Vit D.
Turns out I’m anaemic - would have known that if they’d shared the results with me last week! Think they’re waiting for this week’s results - so may be having an iron infusion too tomorrow- oh joy. It does explain why I’ve been more tired this week and why I’ve got a bit dizzy with minimal exercise.
She has added sharing blood results to my care plan.
I don’t have a chronic hep c infection (old nursing needle stick risk). Very good news.
Vaccines- back to gp. Tried practice nurse before, we’ll see.
Tomorrow will be paclitaxel num 4 of 12 - so a third through. And second herceptin. Even if no iron infusion tomorrow I’m kind of expecting to feel rougher again this week, so tonight I’m going to make and freeze a load of smoothies to chomp all week. So might be quiet on here.
I will however, be lurking and sending positive vibes to you all, you are a great bunch xx
@cridders - what fantastic news - really happy for you
I was in and out of the oncologist today in 4 minutes - he said my MRI taken this morning would be discussed at their multi disciplinary team on Monday and he will see me the following Monday to discuss, and that after 2 EC cycles they expect to see some change on the MRI.
He did remark that I look really well - which everyone is saying - I don’t want to jinx things but my worst side effect so far is headaches (which make me grumpy, and paracetamol does nothing and I’m avoiding ibuprofen during chemo) .
I did online yoga this morning and went for a walk in the afternoon to get my steps in before collecting my daughter from holiday club, we did rangoli patterns outside and sparklers before she went for dinner at my mum’s - I joined them for fireworks in mum’s garden and samosas and cake. As I’m well my daughter didn’t want to go to holiday club tomorrow but I have a picc line care and pre chemo bloods in the morning so we have compromised I’ll
Collect her at lunchtime. She will be made to march around the park though as I’m determined to get my steps in each day! It’s a shame as usually in the school holidays we go to London and see a west end show and go and stay with friends with children or have friends come and stay with us, but she’s missing out on that this year. Hopefully we can forage for some chestnut for the fire pit on tomorrow’s walk
@cridders That is such amazing news. Congratulations. It has made my day reading your news. Soooooo happy for you. Wonderful!
@buggeringon thanks but I’m pretty useless at this sort of thing and I am sure I have missed updates as I tend to catch up ad hoc. But I love hearing everyone’s updates the bad and the good as It is so helpful knowing what to look out for. But seeing @cridders news today is just brilliant.
@anim4l Happy Diwali and enjoy your stomp around the park with your daughter! Sorry to hear you are missing out on a west end show. I love going to the theatre. I am sure I read there are some shows on line. I have never tried it so not speaking from any experience and maybe it was Covid thing. Bring the West End home, not the same but might be an alternative to move night in?
Had number 4 yesterday and I am ‘cautiously’ with everything crossed so far, saying it went very well – feel like I’m waiting for the storm to hit though. No delays. Very smooth and very quick compared to other visits. I felt good and do so this morning. Not a great sleep but OK.
What was really good about yesterday - No sickness. I think I worked out what it might be. As we have to leave home two hours before the appt I was eating beforehand but by the time of the treatment it might be 3-4 hours since I’ve eaten. Yesterday I had a something to eat when I arrived and I had no feeling of sickness at all. (On week 1, when I also had no sickness I had eaten at the hospital as we had a morning pre chemo appt.) Will try the same next week and see if my theory works.
I also found out yesterday, the end of this 12 weeks of weekly treatment for me will be 15th December. The next treatment regimen every 3 weeks EC + Pembro will start on 22nd December – no gaps or rest period. So if everything goes to plan with no delays, my whole chem will finish by end of Feb. Which is much sooner than I originally thought as assumed there was a short gap from one ending and switching to the new.
@emsd2025 how did you get on yesterday? Number 4 done with pembro added in for us . Hope it went well for you and you have a good week .
Good luck to anyone have treatment today. Wishing you the best. xx
Good morning everyone! I’m still in the wide awake club , I can’t seem to sleep after 7am on EC chemo , however hard I try! I’m now just listening to audiobooks in the dark to get some rest.
I’m ve started to feel more tired over the last couple of days.
@cathie2 - will you be having your EC every 2 or every 3 weeks? I’m on 2 weekly and they have been giving me steroids (methotrexate) in an infusion before the EC, this is to prevent nausea but does leave you quite energetic - and then as tablets for 2 days afterwards - so if it’s the same for you - stating on 22 December you’ll be on steroids the 23 and 24th - which might be helpful in the last minute Christmas rush! I’m glad that you’re getting treatment over the Christmas period - I’ve been wondering if they pause or keep going at my local hospital so will ask about that when I have chemo on Friday
I have a child free weekend this weekend as my daughter is going away for the weekend with my sister - it coincides with my steroids so I’m hoping I’ll have the energy to oil my kitchen worktops which desperately need it , and (wearing gloves) weed the garden and plant my spring bulbs
So happy to hear your good news @cridders So this is all worth it for us
Hope you’re feeling better too
Sorry not replying to everyone’s posts individually but I am reading them.
I am Day 3 of EC2. My neutrophils were 1.3 and WBC 2.2 but it went ahead at the usual high dose. Has anyone else had their chemo go ahead with low white blood cells and neutrophils? I have a few more side effects this time early on like mouth feeling sore, skin rashes, soles of my feet red, dry eyes and vision a bit worse, tinnitus and bladder urgency. No temperature thank goodness! I’ve called my 24 hour helpline and I’ll wait for a call-back.
xx
and I am sure I have missed updates as I tend to catch up ad hoc. But I love hearing everyone’s updates the bad and the good as It is so helpful knowing what to look out for. But seeing 
xx
So this is all worth it for us 
