@songbird1 beautiful scotland…my favourite place. X
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Hi @anne3. I don’t know what’s next yet but i think Tamoxifen. To be fair, every cancer drug seems to wreck our hair, skin, nails ir something. Love how a chemo side effect is more cancer, and how the anti sickness pills may cause nausea and vomiting! I think we’re all going to be just taking our chances and putting all our trust in the docs. Maybe ask at next oncology appointment. Hope youre doing well xxx
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Hi @bluesatsuma yes you’re right there, always hair, skin and nails… I’ve got my 4th chemo on Friday and as I’ve had more side effects this time, I’m just finding it harder to remain positive. Then when I read the side effects of that drug it sent me on a downward spiral! Am looking forward to cooler months though when I can wear my little hats and my fringe! Hope you’re feeling brighter now by the way and have some good days ahead. Such a long process but glad we’re all here together 
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Evening
@anne3 sorry I can’t help either, I have only really looked into this bit so far, ask at your next appointment if you can. The cooler months are coming so your hat and fringe will great
@bluesatsuma glad you are feeling a little better, hope you managed to get some hardcore moisturisers, any recommendations? My face is ever dry!
My second EC is done, had bone strengthening as well today and hormone blockers, oh and cold cap, full works, feeling okay but I do have a bit of a headache on top of a sore chest! Hoping I can take a sleeping tablet and manage a good nights sleep, I slept terribly after my first EC!
Hope you all have a pleasant/ okay ish evening
Xx
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@mz45 definitely try Cerave intensive range. Really sorted me out. My skin was not great after EC one, but after this round it’s much happier. What are you taking to sleep? I’m really struggling with slerping well? Xxx
@anne3 stay positive! You have done 3 and are further on than many of us…you’ve got this! Side effects are peaking now. It’ll get better soon. Sending hugs xxx
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@bluesatsuma Thank you, it really helps having people here on this same sort of rollercoaster. I’m usually quite optimistic but am finding it makes me quite emotional. Yes 4th of 8 this week so 
for fewer side effects.
@mz45 yes a mistake to look too far ahead!
Hope you both manage a good night’s sleep! 
. xx
I just read what I wrote back, glad you guys managed to understand it, it was a bit all over the place, do feel a bit spaced out!
@bluesatsuma thank you, I will check that out, I usually use clinque moisturise surge and it’s not cutting it! I was taking herbal nytol on the lead up to the chemo as was sleeping really badly, I called up after I slept badly after the 1st chemo and was told by i couldn’t take herbal nytol but could take the normal nytol, so I took that for a few days after the first chemo whilst I was taking steriods, I didn’t sleep amazing but it was better. My sleep has been fine since for the past 3 weeks but I’ve dug them out for tonight.
@anne3 yes stay positive, you are doing so well, you will be half way through very soon. I have 8 to do too
I currently have my 12 year old firing maths homework questions in my ear, so I best concentrate, lol xx
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Ugh what s disappointing appointment with my oncologist today.
One of my biggest issues has been the mental torment of the 7 daily filgrastim injections and how they started a feeling that every self administered medication is like self harm (knowing which things are responsible for which side effects). I know there is an alternative of pegfilgrastrim that you have for one day and that people up and down the NHS are offered this for many reasons. She told me because of funding she would need to beg the board and do mountains of paperwork, and even then it’s likely to be unsuccessful without me first doing a few other cycles but using different pain meds (including oramorph!). So they’d rather I use a potentially addictive controlled drug than just help me avoid having to inject myself so frequently?!
I’m so sick of different NHS trusts treating their patients so inconsistently (and I work for the NHS so I see it daily at work, this is the first time it’s affecting me and I was already POed). I’m sure other trusts let patients who aren’t distressed use the one injection, it feels so unfair it’s not consistent across the country.
I just feel so unlistened to and dismissed, like she kept saying if we can get the pain under control it won’t be an issue. The issue is I have become scared of those injections and the stress, anxiety and terror of having to administer them is causing me mental distress. She suggested someone adminstering them for me, I don’t like the sound of that either. I’m so POed.
2nd cycle/treatment tomorrow and I’m not in a good place mentally and had really hoped today’s meeting would have helped, teach me to try to get my hopes up.
Hi @sez. I don’t get the filgrastim and pegfilgrastim thing either. In my trust, we all get pegfilgrastim. I was never given a choice. Is it purely money? I think my trust uses it as it’s probably easier to teach people to do one than 7. I am in Birmingham and the hospitals have numbers of non English speakers and maybe it helps to explain. I also thought maybe it’s more cost-effective as they needed less district nurses for people who couldn’t do their own needles.
Regardless of why, you are right…it isn’t fair and you should get the most suitable drug. Insane that they’d sooner give you oramorph. Could you ask again? Make a fuss?
I’m sorry that you had a frustrating meeting and didn’t get what you needed.
Xxx
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@lilly123 I hope today is much better and you feel better too. Xxx
I’m getting up early to make cakes as I can’t sleep. Not even sure if I’ve actually been asleep or if I just lay here for a few hours?!!?
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That’s what’s so frustrating, there’s no consistency across the country. I literally have stress migraines knowing this is all starting again and they’re saying it’s a money issue (does prescribing me numerous other medications and potentially sending someone out to me daily really cost less? How much more does pegfilgrastrim even cost?!). I’m being treated in Manchester, I thought the trusts here were some of the best in the country but this is just so wrong. I will continue to bring it up at every opportunity but after her response I doubt anything will be done about it. She made it seem like such an unreasonable demand and I used my peers in this forum letting her know how ridiculous it is that it’s being prescribed to those without mental issues I am struggling with. I personally think she’s quite green and doesn’t want to be forceful, the fact that she’d moan about paperwork as if that’s going to make me feel bad for her and go “oh well don’t worry about my mental distress if it’s going to mean extra paperwork for you”, so unempathatic.
Makes me sick.
That they want me to take more, potentially addictive, medication instead of dealing with the mental anguish tells me how little they value my sanity.
I slept for about 2-3 hours last night I am so angry, think I’ll end up napping during my chemo this morning.
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It’s crazy @sez. I’d have thought a big trust like Manchester would be similar to mine. I have heard on other threads on here of people being switched to pegfilgrastim because of pain. It is more expensive, but arguably more cost effective as less need for pain meds and nurses coming out. Plus you are getting distressed and surely this counts towards a change in medicine? I’m cross for you. Go to Pals. They are excellent and may get you a result.
Hope chemo goes well today and you get some extra sleep xxx
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No wonder you’re fuming @sez🤬
I definitely am! I case that doctor has forgotten, you the patient are the reason she has a job and pardon my French, but the fact that she’d moan about paperwork and not focus on you wellbeing whilst being treated that should be her main priority … makes my blood boil nit to mention lack of professionalism!! @bluesatsuma hit the nail on the head there.
Ok I’ll rant in my corner now 
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Well done everyone for continuing to navigate the crazy ride that is your chemo journeys. I’m sorry I’ve been quiet recently, I find it difficult to reply to all the messages but I read every one and am sending love and hugs to you all.
I’ve had a rough week after cycle 2. This was unexpected as my first cycle was pretty uneventful. Sadly I had a reaction initially to the chemo last weds and they had to give me antihistamines and steroids- was able to keep going once they slowed it though thankfully. I blame all this for making me feel waaay more fatigued this time but turns out my white cells were too low as well and I’ve been in hospital since yesterday afternoon.
I had horrendous ulcers appear on my mouth that I couldn’t cope with so I called the treatment helpline- so glad I did- they got me in straight away and after many antibiotics and fluids and the magic mouthwash that is difflam- I am feeling like myself again yippee! I even had a cooked breakfast this morning!
I didn’t realise how ill I actually was, until I am feeling better today. Learning point - always call the helpline if I have any concerns!!
Xxx
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@haymc. oh gosh sorry you’ve been so unwell. Yes it is always when you suddenly feel better that you know how ill you were! Hopefully you’re back on a smooth track now. Take it easy
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Just finishing my treatment and of course today had a reaction (like I wasn’t already in a bad mood).
I had been doing cold cap and amazingly only shed very little (didn’t want to jinx it by mentioning it) but now because of this reaction (it was like extreme dizziness, felt like I was going to pass out, shivers, struggled to breathe and my head went before cramps in the lower part of my body) they’re not going to let me ever do it again, even though it wasn’t the cause. Something about if I did the cap again it takes them longer to administer the medication, but at the same time telling me they’re going to have to administer it longer anyway so not so fast as before. So I don’t really understand why but at least I don’t feel like a wuss. I would have done it as long as they’d let me.
Uncle Fester may appear sooner than hoped.
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Oh @sez and @haymc I’m sorry you’ve had rough days. I didn’t realise we could still have allergic reaction even after already having had a dose or two. Hope you both feel a lot better very soon. @sez sorry you have to stop cold capping.
I have not had so many of the horrid side effects this cycle, but I am bald and weak. Sleep is awful. I’ve been keeping all cheerful for the kids, baking cakes and keeping them busy. But so so tired.
I was going to ask what is brightening your days? What good stuff is making you happy? For me, it is friends and neighbours, netflix escapism and I had a lovely time today trimmimg my wig into a more me style! X
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I was told many people have a reaction the 2nd or 3rd treatment, apparently your body basically is shocked you put the same poison in your body more than once and has a tantrum/protest.
It was scary how quickly it came on. I had one cough that altered my breathing, then my head went and I couldn’t focus, cramps in my stomach/legs appeared, uncontrollable shakes and then I struggled to breathe and my head completely went and I thought I couldn’t breathe. My body started sort of convulsing and shaking and I thought I was going to lose consciousness or die. Luckily I was very close to the nurses station and didn’t need to alert them, they clocked very quickly and a herd of staff rushed over, turned my meds off and removed the cold cap after they’d put the oxygen mask on me. It was probably only 6 minutes but felt so traumatising.
Never want that to happen again.
Utterly exhausted after that and had a kip there, also slept when I got home. There was me hoping today would be better because I was more prepared.
I’m pretty easy to distract, great comedy or music get me through if I’m not with my family.
My poor cat is unwell too so it’s an extra bad time.
Good eveing, gosh it’s a lot isn’t it.
@haymc sounds like you had a similar reaction to what I had on my first cycle, they lowered my dose by 20% this time so I’m hoping I don’t end up as bad.
Like you say sending hugs and thinking of everyone xx
@sez so sorry to hear you had a tough time. Sounds terrible. I think it’s clear the care has gone from the system they are all so busy just getting through their lists, we are a number.
I had to make my own bed In hospital last night, just asking for the commode felt like an inconvenience but I was hooked up to so many drips I couldn’t leave the room!
I am 2 days in and can feel my mouth is changing tingly and my teeth feel tight, also feel like Iv got a band around my head, feel weird this eve. Have the most amazing cravings for food but everything tastes off.
The rash is back on my chest and my skin very dry. Had little sleep due to steroids. No bone pain yet from filsgram I can’t remember when that started last time.
I think it’s hard to accept that It’s not the cancer making me ill it’s the medication!
I guess we have to look at the positives and that is we are getting the treatment as awful as it is!
I hope everyone is able to have a restful night xx
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