@gromit12 oh right, there’s so much to understand isn’t there, it’s hard to take it all in when it’s something we haven’t experienced before, I had mine removed and luckily they were clear too,
Sending big hugs to you
I got similar news this week @gromit12 but my BCN said that was a good thing, the only thing they don’t like to see is growth. She said that the ultrasound also doesn’t show exactly what’s in there, just that there’s a mass so we can’t see if the whole thing is active cancer cells or if it’s something else. I can feel mine is getting squishier so something is changing, even though you can’t see it on the US.
Thanks for the information @hc1973 . Two things that came from the workshop on Monday, scalp wise. One was to use your toner (we all do that every night right?) on your scalp too - it was so beautifully cooling! And the second was to stop using shampoo once your hair is pretty much gone but to apply conditioner before the shower, leave it for 5-10 mins and then rinse off so your really looking after the scalp not hair any more.
Had my first Pacilaxel today and had got myself into a bit of a state, reading about reactions during as much as after it. I’m glad to say that it was drama free, if lengthy. My first chemo without the scalp cooling and so it felt so much easier - no headache, no nausea, no sickness and no freezing. The choice was right, adding 2hours to a session which already took 5 would have been crazy especially when I’ve only a small % of my hair left. Soon I’ll stop talking about my hair ladies I promise
Had a dramatic toilet situation this evening (don’t like to be left out of all the talk!) but can’t believe how few meds I’ve been sent home on this new regime. Let’s see what the weekend brings.
Oh and I also was invited for my covid booster- checked with the BCN and she said this week was the best time so I’ve actually got a slot for tomorrow morning.
Sorry to hear about those of you who are struggling with difficult weeks, you will get through it even though at the time it seems like forever. Take care and look after yourselves xxx
Holy moly, started the Docetaxel steroid loading on Weds for me to start Docetaxel in 6.5 hours. I’m on 16mg a day of Dexamethasone and it’s like I’m on speed. Absolute hideous twitchiness. I’ve basically acted like a cocaine addict all day and my eyes hurt from them being so wide all day.
I found the 8mg dose okay for EC but was very red faced, quite puffy and twitchy but managed to sleep okay.
It 3:11am and I’m WIDE AWAKE!! I’m going to be screwed at chemo tomorrow and need to pack for the wedding and clean the house too. Eeekkkk! Dreading driving to Glasgow from Bath on Friday with three kids and then doing my GCSF jab en route.
Saw oncologist on Tuesday as always and she said that Docetaxel can often affect hair less so I may keep my blondie/grey centimetre of new hair. It’s only come through in a Mohican though so that’s an interesting look. She also said that Docetaxel should be able to be managed with analgesics and much less about anti-emetics. I’ve got paracetamol, ibuprofen and OraMorph for it.
Chatted about kéfir and she said it’s one of the things they recommend for menopause as well since oestrogen affects gut function so the loss of oestrogen can cause gut upset (usually constipation). Kefir helps with that for a lot of her patients.
Oncology nurse told me that the diarrhoea generally comes on days 4-6 IF it comes.
My team are very chilled about side effects and don’t believe it’s necessary to have a hellish experience. They love a phone call about it and instantly have a solution to help. I can’t fault them in that way at all. I’m really going to miss them as they’ve been my greatest support and always come in to my room for long chats when I’m in for PICC Line flushes and chemo. My Dad came with me a few weeks ago and said it doesn’t even feel like a hospital. It just feels like a relaxed clinic and he couldn’t get over how kind everyone is. My oncologist even sent me an email today telling me how very very well I’ve done after I said I was struggling mentally with ‘restarting chemo’ on Docetaxel/Taxitere.
Fingers crossed for tomorrow’s session. Love that they won’t make me eat ice lollies for the whole thing this time as they are making me gag now. Mouth ulcers aren’t a thing on this drug luckily. They’re giving me ice baths though for my hands and feet to try and prevent peripheral neuropathy. Onc said she’s never ever seen mets on toes or fingers so it’s worth the vasoconstriction. She’s ex-Marsden and Onc Lead for South West for Breast and Ovarian Cancer so I’ll trust her on that one.
Will report tomorrow on how it’s gone if I’m not fast asleep! My ever faithful Burmese cat is snuggled into me snoring. She’s not left my side since diagnosis.
Anyway, I’m going to take my cokey steroid ramblings and shut up now. Xxx
Your team sound great @swk1981 , whilst mine are good I get pretty much standard advice and the BCN only mentioned painting nails on Monday. When I saw the Reg on Monday for the first time since she told me I’d be having chemo, she asked how I was, said I’d need to continue, Domperidone, omeprezole, Gaviscon etc and outlined the possible s/e of the next phase, but at the session yesterday the only prescription was for the injections…… I asked for Domperidone but forgot about Omeprezole (noticed the woman opposite had 3 bottles of prescription Gaviscon , which I buy myself!) so will need to follow that up today. There’s a bit of tension between hospital and community teams so they complain about my PICC dressing all the time too. It’s not the end of the world, just another thing.
Yes I agree @swk1981 your hospital sounds lovely, I’m not allowed anyone with me unless it’s a consultant appointment, and when I asked Tuesday on my telephone consultation about preventative ways to stop side effects she was not playing ball, I’ve also heard that icing hands and feet could prevent nerve damage and as I’m still suffering nerve damage from my slnb I was keen to try, I will ask again tomorrow.
I’m starting my steroids today too, sounds like it’s going to be a fun day I’m hoping it helps my aches and pains as I slipped down the stairs yesterday ( about 5 or 6 steps) went down on my back bouncing the back of my head off the step too. no serious damage done but a bit tender today,
I’m just not good at concentrating
@altoan thanks for the info! Quick question were they saying to use conditioner even if you’ve shaved your head and just got stubble? I’ve still got flaky skin on my head and the Jennifer young stuff is good but I’m not sure if I need to do more! Thanks Helen x
@swk1981 hugs and for today. Your treatment centre sounds lovely. My treatment takes places at 3 different hospitals- one for chemo, one for PICC line, and one for ultrasounds, echos and oncologists. Haven’t seen a BCN since diagnosis. Everyone v nice but no one really has time. And as no visitors it’s pretty lonely. But v competent and that’s what matters xx
Ooh @Elle22 take care, we’ve enough aches and discomfort without adding more random ones to the list!
Yes @hc1973 i think so - he addressed me and some other ladies by name and I’m certain there were only 2 of us who had any hair to talk of, the others had lost theirs. Not every day of course, but weekly as a treat like you would a hair mask/conditioner in that other life! And stop shampoo, he was very clear about that.
Thanks for this, I thought it was the other way round, so I will stop the shampoo, I’ve been rubbing my head with soap and glory coconut & almond oil ( just what I had) I’ve not really suffered from a dry scalp but I like the smell
Thanks for the concern for my fall, just to reassure you all I’m absolutely fine just a bit sore and the steroids have decided rest is not good today so I’m bouncing off the walls, not literary
Hope today goes smoothly for you @swk1981 x
Oh yikes @elle16, hope you’re okay!
So I’m 45 mins in to the Docetaxel and no reaction at all. Apparently, IF it’s going to happen, it happens in the first 15. I asked about administering it slowly and Sonia said that it really wouldn’t make any difference from standard flow. You’re either allergic or you’re not.
They’ve tapered my steroids too to be:
Day 0 (day before chemo) - 16mg
Day 1 (day of chemo) - 16mg
Day 2 - 16mg
Day 3 - 6mg
Day 4 - 4mg
Day 5 - 2mg (breakfast only)
Hopefully that will soften the fall off the cliff.
Steroids = indigestion often so she said to take Omeprazole as standard for the first week every morning to head it off.
Otherwise, analgesics for bone pain as needed and GCSF as usual on Day 2 afternoon only (mine is a slow release one rather than daily injections, even on EC).
Polybalm has pulled my nails back from the brink and they’re super strong again. It’s been s game changer and Sonia is now adding it the the hospital pack they give the chemo starters, along with hand creams and ginger tea.
I’ve also been using a medical foot balm by Margaret Dabbs which is all natural but it’s transform the pain I was getting in my feet from sore heels etc. do it once st night with polybalm and wake up feeling great. Works well on heels and allows too! Polybalm in the morning too and it seems to work a treat. I’m not sure I believe in the whole nail polish thing as it’s more the nail bed that’s the issue for losing nails. By not having nail Polish, my nails can absorb the Polybalm and it penetrate the nail bed through the nails and the cuticles. Still have half gels growing out on my toes and it’s annoying to not be able to moisturise under them as I’m too scared the salon will cut my skin filing gels off!!!
So, all in all, Docetaxel Cycle is 1 is going beautifully and no sickness like bloody EC! X
Hope your back isn’t to bad same happened to me few years ago and tail bone was the worse. Tiger balm was great. My Hosiptal is the same, only time someone can come along is consultant appointment.
I’ve had peripheral neuropathy for 5 years (rare neuro vascular condition) I’ve been told the worse thing is ice on hands and feet as it can damage nerves more. I’m on Amtripline for it and oncologist agreed.
So many drs tell us all different things. Xxx
Mines the same 3 different hospitals and only seen BCN at diagnosis. Hospitals under so much pressure and short staffed but once again they’re very competent
@swk1981 Glad to hear it’s going well! That’s interesting to see how your nails are as my hospital gave me polybalm too as a trial for them so I haven’t painted my nails to let it rub in/absorb properly too and they’re still looking good and strong. My toenails are looking better than before chemo🤣
Off to order some poly balm now, think the Amazon man is starting to worry I’ve moved house so will get onto that today, I’ve never heard of it before, thanks for the heads up on not icing as I was debating taking my own ice blocks I definitely don’t want to make it worse, the doctor prescribed me something for my nerve damage before my operation but I couldn’t take it as it made me feel drunk to the point I was scared to drive, it’s definitely slot better tan it was , not burning anymore , originally felt like I was on fire
I can’t sit still, walking round the hose and seriously dry mouth from the steroids, had a call to say they’ve changed my appointment tomorrow from morning to afternoon so I will be wizzing round the Aldi in the morning on my steroid rush
So glad your treatment went well today @swk1981 feel more reassured now for tomorrow
Sorry if I’ve put some spelling mistakes in , I’m writing this without my glasses, living life on the edge
Wow, it’s £50 a bottle so going to see if I can get it prescribed , does anyone know if I can get it on perscription? Xx
Luckily I missed my tailbone