Same! Sitting at a desk all day is tough isn’t it!
Thanks @molly.m yep had my 3rd weekly pacli and ok so far. Pumpkin picking was brilliant!!
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I’ll share any updates on here.
I intend to mention the study that shows the correlation (summarised here) Study: Low Vitamin D Levels Up Risk of Neuropathy From Chemo
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I had paracetamol 30minutes before my Phesgo injection last time so I’ll do the same again and it’ll help with the cold cap headache I’m expecting like last time. I’ll remember to ask for more after 4 hours to keep on top of it for the day!
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You can tell I’ve had a day of Dexamethasone - still awake at 01:30!
@buggeringon Oh dear you’ve had lots of issues.
I found the Oncology registrar really good on Monday he explained things well and when I mentioned some heartburn he said he’ll prescribe me Omeprazole.
I’ve written down my questions to ask the chemo nurses tomorrow:
Ways to manage headaches if not paracetamol
The use of nasal sprays
Get parking form signed! That’ll save me for a long walk back to the Chemo unit!
@molly.m 2 pumpkins well done. I have a friend who’s said she’ll teach me to crochet. I’m docetaxel & carboplatin so I’ll ask about round 2 issues - thanks for the heads up. Did they do a faster flow 2nd time round?
The good news I forgot to share was the registrar saying my tumour has shrunk - I had optimistically thought it myself, but it was amazing to get it confirmed.
Now I must get some sleep.
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Hi Re Vitamin d, GP based tests are way too low and generally they do not provide the right level of vit D. You truly need to look for specifically D3. As for getting strentgh back from a sedatery life, ie to prevent achng legs. Try Cal Mag combination, Calcium is better absorbed in this combination. Look at Hellenia Health Products, and don’t be afraind of ringing them up for advice. Tel 01765-603816, they are a family run business. Keep me posted, Moonsox. Ps I went 4 years with an infected vector bite, prior to breast cancer, but still managed to exercise working muscle groups in. isometric exercises. also do as the olympic team did during covid, by visualising your exercise routine, your body still works that area and helps keep it active, this is what worked for me. I’m now back in the saddle and my weight is slowly returning to my fit weight. Good luck, Love and light Mxx
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Ugh revenge of the filgastrim - awful bone pain today 
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They should have your vitamin D levels on your blood work, thats where they told me mine was so low. I think the nurse said that they only prescribe vitamin D when you have gone through menopause or over a certain age (I may just be making some of that up as it was 4 weeks ago) so she said to get a treatment course from the GP to boost mine up.
@buggeringon bloomin eck, sorry your day didnt go smoothly, hope your heads ok from the coolent. Did they grade your neuropathy? My nurse said I was grade 1 because of the numbness and tingly hands. Lasted over a week I think of my hand just feeling strange. Nose wise I got a little sore on the inside. Was told as long as its not open wound use vaseline inside. My nose is just constantly dripping. Lots of sniffles, got a little blood a few days after first round.
@emsd2025 glad your doing ok so far. Fab photo 
ah just seen your new post. Sorry about the bone pain. Hope its simmers down for you soon xx
@dizzy3 ive been worried about taking paracetamol aswell but the nurse said have them. Just check your temp before re dosing as it can hide a temp. Ill probably not have them every 4 hours, maybe 5 or so just so I can get a proper reading. Also just got the heart burn tablets aswell I’m not actually sure if it was faster. I got in at 9.30 - 10am appointment. Had a good chat about symptoms I have and ways to manage and help with them. Thats when they said about reactions on the second time round. Said they it usually happens within the first 15 mins, if it is going to happen, but there around and keeping an eye on you and theres a stop button if your really not feeling good. And thats fantastic news about your tumour. Its brill to be able to tell that its working. All my fingers and toes crossed for you today xx
So far so good for me. Going to have a ginger and lemon tea because I’ve terrified myself out of having ginger capsules aha it says food suppliment on the box 
my brain. Going to have an antihistamine later tho hopefully to keep the spots at bay this time round.
Xxxxx
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How is everyone doing today? I’ve been trying to take it a bit easier this week in preparation for my most tired days I’m expecting at the weekend, but got out for a nice walk with a friend this afternoon, and have walks with friends planned for tomorrow and Friday.
Have signed up for an online mindfulness course and have been drinking lots of vegetable juices …
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Good morning all Sorry I have been away for a while, not really away, but in a sea of pain and no sleep, for the last week, due to the Filgrastim injections. However, I saw my Oncologist yesterday and he said ’ well we can just stop the injections if you want’ , not something I had anticipated, but he explained that they are a fairly recent addition and people never used to get them, it worried me not to have any though, so I said I would take 2 out of the 5 next round, although I have already changed my mind to only the one! He is going to get my blood tested on day 7, to make sure I have enough white blood cells to keep me safe, if not I may have to have an extra one, but not all 5! I thought I would share this information, so you know it is a possibility if you are really suffering with side effects, like @healed . I will be so much happier going in for EC3 on Monday, if bloods are ok this time. Today I have a Covid vaccination, tomorrow a Flu vaccination and also give blood tomorrow. I was told yesterday to get the vaccinations as close to the start of my next chemo as I could, as that is when your immunity is at its highest.
So pleased that everyone is getting through this, some of you with lovely outings etc thrown in. Well done to everyone.
Love Jane x
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Oh no I’m
So sorry to hear this @bellbert but great they can be reduced
@bellbert - thanks for sharing that info, I’m sorry you are suffering so much with the filgrastim. I also found the bone pain a lot on my first cycle - this cycle I’m taking 10mg loratedine before the injections. How many more EC’s are you due? Hopefully you’re nearing the end…
@bellbert - good luck with the vaccinations today - id suggest taking a N95 mask to the vaccination centre if you have one as they make you sit and wait afterwards- or explain and ask if you can wait outside?
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Thank you, I do already take Clarityn antihistamines and last cycle they helped, but not this time! Monday is my last EC, it is number 3. I have read that number 3 can be worse, but my chemo was reduced to 75% after I ended up in A & E on the first round, with bad reactions, so I am hoping that I may be ok. I then have a 3 week break and then start on Paclitaxel for 12 weeks, with the Phesgo injections every 3 weeks ( for around 1 year), then radiotherapy over a 5 day period ( the newer boosted ones), then Zoledronic acid infusions every 6 months ( as I am past the menopause ) and hopefully that is it ? Thank you re mask advice for vaccinations today, I will make sure I pack my mask Hope you have a good day. x
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Hello All
Hope everyone doing OK. I am catching up, had a good few days since my treatment on Monday. All gone well and I am feeling good overall. Insomnia much better this week which surprised me and I am not sure why. I’ve tried to be more active on the steroid days. Getting out with a few walks each day to maintain steps and health. Maybe that has helped.
@emsd2025 Congratulations on your upcoming wedding. 
How lovely and something to look forward to and focus on. Hope the dress fitting went well. Lovely pic from pumpkin picking. I hope the bone pain reduces for you.
@anim4l Thank you for the tips on antisickenss. I will see how things go. Next week I have pembro added in aswell for the second time.
I thought I was given two anti sickness at the hospital on session 1 but the last two sessions they have only given me one anti sickness to take at the start of the treatment. I will see what I can find out.
It looks like my treatment is similar to yours but the other way round. I am on paclitaxel and carboplatin weekly with 3 weekly pembro. After three months I switch to EC and pembro three weekly.
@dizzy3 That’s amazing news that your T has shrunk. Congratulations. 
@buggeringon I also take paracetamol half an hour before the cold cap as that is what was recommended to me too.
I’m sorry to hear you had a few issues to manage and having to go back for meds is not ideal. I asked for a copy of my bloods and they printed them out for me there and then. I want to see each week if anything is dropping for me or anything I need to keep an eye on that I can do something about. I’m sorry to hear you could not get your results easily. Do you have a nurse or your oncologist secretary that could get them for you and email them?
@molly.m thank you. And glad you can get your treatment closer to home for you. That is more convenient. Hope all well this week.
@bellbert I went through chemo 20 years and 18 years ago. They never gave the Filgrastim as routine. At that time they said if your blood count drops we will give you an injection to boost. I got all the way through on my second time to the last but one dose before I needed a boost. There was very little info at the time available but I read one sentence in a health book that said green beans can help boost your white blood count. So I had green beans every day. Raw and cooked!!! My kids always remind me of taking them to the cinema and handing out green beans as snacks – they never let me forget!!! 
I hope you can get the balance right to get you through the chemo. Good luck with your last EC next week.
Best to all for everyone gong for treatment today. 
xxx
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Chemo 2 went ahead yesterday.
Short version - All went well.
Now the long version!
They decided I didn’t need to have bloods taken again as they were happy the extra Filgrastim on Monday would have been enough to get my neutrophils to an ok level - they weren’t far off (1.5 rather than 2).
Phesgo injection was done higher up my thigh this time (fleshier bit). As 1st time a bit a of sting but bearable, just achy. This time I discovered a cracking bruise in the evening.
PICC line has definitely settled well now - no issues
Docetaxel followed by Carboplatin infusions. They explained they do it slowly again as 2nd cycle about 2hours for each. All fine - no issues so will be quicker ongoing.
I had the cold cap on for 6 hours. During that time I drank loads so subsequently had 5 of 6 trips to the loo so at least I got to stretch my legs. The nurse said they used the same cold cap as last time but the outer cap felt a bit loose so I may try small next time.
During the chemo I had a chat with the ladies and nurses in my bay, a leg & foot massage, lunch then an hour nap.
When I got home at 5pm I went for a 45minute walk with my son and dog to get some fresh air more than anything. I felt fine - the power of steroids!
A good soak in the bath - arm in waterproof sleeve and up on cushion on the side of bath. A bit more shedding of hair than my usual moulting so I will keep an eye on that but it may have been from a more thorough wash/comb.
I got about 6 hours sleep last night before the need to wee woke me and I stupidly didn’t go back to sleep at 5 so will have a nap later after walking son to school. Mind you I may not join him for the walk, the Phesgo ache just kicked in when I walked upstairs to get him up!
I will cautiously enjoy my better days today and tomorrow before my, now 7 days of, Filgrastim and expected aches & tiredness. Then I’ll be watching out for headaches, but after advise yesterday will manage with occasional paracetamol (after temperature checks) followed by a call to hot line if they persist and an A&E trip if advised.
I have a call with my Headteacher tomorrow to work out whether me doing occasional hours (WFH) between managing headaches and rests is manageable. Luckily I’ve recently switched from classroom, to a mainly admin role so it should be viable. But I’m already missing the sports afternoons and swim teaching I usually do as well.
The friend support schedule kicks in again today so I have lots of (manangable length) visits to look forward to.
Look after yourselves everyone.
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Morning @cathie2 , thank you and so pleased to hear you are feeling quite good at the moment. That is a great tip regarding the green beans - so much nicer than those injections! I see now why he was trying to convince me not to have the injections, he was saying that he thought I would be safe enough but I was trying to hedge my bets I have decided to have just the one injection and keep the other safely in the fridge in case the blood tests show I need it, so I will be stuffing myself with green beans instead, I love alternative plans.
Jane x
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@cathie2 I’ll have to up my green bean consumption! They’re my son’s veg of choice, I usually lean to broccoli but I’ll up my green beans as well!
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@dizzy3 - glad to hear the chemo went ahead
I have a work from home job but have decided not to work during chemo - my brain fog is my main symptom and it’s making organisation hard.
I’m day 7 after my second dose dense EC and for the last few days my hair is shedding everywhere — I thankfully only have hard floors but it’s making such a mess! Looking forward to shedding completing …
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Hi everyone - the bone pain much much better today thank god, yesterday was not fun! Dress fitting was fine apart from I need to stop chemo carbing I think as it’s in 2 weeks and the dress is very fitted 
. We decided to bring it forward and just do immediate family after the cancer shit show. I’m definitely getting on the Green Bean train later too, great tip! Weirdly @cathie2 I only have one anti sickness oh the pacli weeks and only steroid on the day - odd
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Thank you I hope your bone pain improves too. I know they keep us safe, but they are little buggers and I am pleased that I wont have them on the Paclitaxel!