Sorry, in case I’ve misunderstood, are people saying they’re not having an oncologist consultation monthly (or more frequently depending on cycle length)?
I know all trusts are different but that’s shocking.
I was assigned a Macmillan nurse who I can email/phone at anytime but she only responds during the week. A Macmillan nurses number that works during work hours during the work week and a bit weekday evenings (sometimes my Macmillan nurse is on that number too, more often isn’t though).
An oncologist who I either could have a telephone consultation or a face to face (I always go for the latter cos I also want her to SEE how sick I am so it’s a thorough assessment, my treatments are three weekly) with days before my treatment (usually a day or two before but sometimes a week before if I’m at the hospital anyway). I also have her secretary’s number to pass on messages (the Macmillan nurse also does this) and the oncologist usually calls me back.
Then I also have the 24 hour emergency number (which is also the hospital I have my treatments at).
I’m on Docetaxel (as well as Phesgo, Carboplatin, and monthly Zoladex). It’s pretty horrible, but it really does affect everyone differently, and there is a lot they can do to help as well, so REALLY DO make sure you tell your team about your side effects. My first round was the worst, because I think it took them a while to work out how it affects me, what dose I need (they lowered my dose 10% after the first round), and what works for me in managing side effects. The second round was better on most things but off the charts bad for nausea. This last round - the third one - was much more manageable and I think they have got a better cocktail of anti-nausea meds for me now.
My side effects hav been pretty similar to @bluesatsuma though so far I haven’t had much problem with my nails.
I had some neuropathy in cycle 2, but cycle 3 has been better on that front too which is weird (maybe it is still coming?). Not much they can do about this but if it’s really bad, they can lower the dose.
Very dry skin but that is manageable by being diligent about moisturiser, especially to face, lips and hands. I also don’t shower/bath as much as I used to because I’m not doing much, and my fatigue is really bad but honestly I think that helps my skin as it’s less dried out.
My taste is off and everything tastes a bit weird, but I’ve learned to live with that, and I like stronger flavoured foods when I don’t have nausea, as it overpowers the taste thing a bit. I lose weight in the first couple weeks but put most of it back on in week 3 when it’s such a major relief to be able to eat a bit more normally again!
I personally do get really bad nausea (not everyone does) but they have loads of different anti-nausea meds so be sure to ask for them and ask to try a different one if your one isn’t working. I’m now on three anti-nausea meds, at strong doses, and it seems to have finally improved things. It’s still pretty rough but I’ve accepted that I can handle it for a few days that it’s really bad, and I’ll just eat less! Drink lots, eat little and often, and eat whatever you feel like if you’re struggling to eat (for me this changes every day and every cycle which is annoying but hey, it is what it is!). I also eat high calorie stuff if I can’t eat much - so for example if I’m feeling too sick to eat, I might drink a full mug of whole milk just to stave off my hunger and get some calories in me. I drink a lot of fruit juice, though to tame that when I’ve got the runs! Peppermint tea and ginger tea or ginger beer can help for nausea - just be careful not to have things that are TOO bubbly if your tummy is sensitive to that.
You can get constipation or the runs with Docetaxel, this obviously isn’t much fun, but again, there are meds to help with either (and diet/movement can help too especially on the former). Shi calls it Docetaxel Lava Bum which made me laugh – you’ve got to laugh or you’d cry! Again some people get it quite badly and others less so. I won’t say I’m totally used to it but compared to the nausea, I’ll take it!
You’ll probably be given anti-fungal stuff as standard, but if you start feeling like there is a sort of fluffy flim in your mouth, things taste really gritty, or your taste is more off than usual be sure to ask if it might be oral thrush - I’ve had that a couple of times and it cleared up quickly with meds, but in the first round I didn’t get the meds very quickly and it was awful. Now it’s manageable as the med is quick to work.
I got a rash and sores in the first round but after dose reduction I haven’t had any - but again I asked for a cream in case it comes back.
I’ve got hot flushes and ‘chemo brain’ too but to be honest I just live with that and don’t drive - it’s only temporary!!
The fatigue is really bad – no great tips here except rest a lot, I guess. I think a lot of the battle here is just managing my own and everyone else’s expectations. I have tried to just make my peace with that and not beat myself up for needing and taking lots and lots (and lots!) of rest. I’ve learned not to plan too much in one day, and to expect to need a nap or a very early night, even in my good weeks. I know movement helps with fatigue, and I do what I can, but sometimes I don’t have the energy to do anything and I let myself off the hook. We will have a chance to rebuild our strength, but this period is just about getting through the chemo. We’re amazing for getting through it and that’s the priority!!
I hope this is a bit helpful - major thing I’ve learned is ASK FOR HELP and don’t think you just have to suffer through the side effects! Feel free to ask any questions - it took me a while to work out how to manage Docetaxel side effects but I think I’m a bit better at it now than I was a couple months ago. You can do it!!
Oh and whoever was asking about magnesium – yes I had low magnesium, and low potassium, which gave me cramps in my leg(s), but it was sorted out with supplements.
I saw the oncologist last week in August and again last week. Not between. I’m not expecting to see her again till 3 months time. The routine at my hospital is each week the chemo nurses ask about side effects and how I’m doing. If anything is amiss or needs further checking they contact her by phone/email - she’s based at another hospital. Next thing the people who man the 24hr phone line suddenly appear to ask more questions and the Senior Oncology Nurse, who is absolutely lovely might also come for a chat. They deal with problems and give prescriptions. It all seems to work very well.
I’m equally surprised that some people see their oncologist every week.
My oncologist is at a cancer hospital a 3hour round trip away, which is also where I get my chemo. I have another general hospital about 30mins (on a bad day) away where I get my bloods and stuff done. If I hadn’t had a bad chemo reaction they would have moved my chemo at the halfway mark there to their Macmillan unit but I don’t feel safe doing that, I prefer to be at the hospital (even though it’s so far away) with all the cancer doctors close by.
I’m so surprised at all the trust differences (you’d think nothing could surprise me at this point).
I don’t think I’d feel comfortable not talking to my oncologist before every cycle (I really like my Macmillan nurse but it’s not the same).
There’s another difference. Right at the beginning I asked my surgery if they’d do bloods. They said Yes so every Monday morning I cycle one mile away to have them done. The samples are picked up before 1pm and taken to the hospital. Tomorrow will be my 12th and last blood tests.
The Macmillan nurses and oncologist didn’t want me having my bloods done at my gp surgery, I asked about it at the start and they said the results would be delayed if we went that route and they’re easier to access if I get them done at the hospital instead.
I hope someone somewhere is compiling statistics to show which of these dozens of different approaches and drug combinations work best. Or if there’s any difference.
A wonderful charity called Penny Brohn do loads of online classes including yoga and Tai Chi. You can do it at your own pace and ability, they can also offer adaptions if required.
They also have nutrition information.
Chemo brain is real, chemo affects your whole body and can cause hot flushes etc
Yes sorry, I do know it’s real, I just meant that it might be caused by lack of estrogen rather than by the Docetaxel per se. So many drugs, so many side effects, who knows what is from what!
I read some of Penny Brohn’s nutrition stuff but didn’t realise they offer classes - thanks for the tip!
I upped my oily fish, wholegrains and added things like flaxseed or a nut/ flaxseed mix to food (porridge/ smoothies). Reduced sugar, caffeine and processed food.
Here is a couple of links with some advice.
Weight bearing exercise (walking/ running) helps maintain bone health and I found being active really helped with sleep and hot flushes.
We do have to seek advice about things like st John’s wort and evening primrose which are often in articles about the menopause but pretty sure if we have hormone receptive BC we should steer clear.
Being able to do this stuff during the chemo Rollercoaster feels very inaccessible but I am hoping after that’s finished there will be more motivation to try and manage all of the issues from the lack of hormones
Three Taking a day at a time, or trying to.
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today." - words to live by at the moment!
I set up the whatsapp group for this Sep forum to keep in touch beyond chemo and plan a getaway- gettogether next summer. So far we are thinking in either Birmingham or London possibly.
Please click on my username on top of my post (rosegarden1) and then you can message me directly on this page with your mobile number and I can add you.
And if others in this Sep group would like to join, that would be lovely. The direct messaging path on this forum is a bit difficult to access, use, sorry. I will be keeping an eye on my message in box.
Thanks and hope it goes well. Rose
Thanks. Bluesatsuma, great you would like to join; please message me directly by clicking on my username and I can add you to the group. Also posted in the forum just to explain how to do this. Thanks, Rose
Anyone get stomach cramps with paclitaxel? I’ve had three days of horrific joint pain which is settling now, but the stomach cramps seem to be lingering. Other than that, the first pac hasn’t been too bad I think (with a MASSIVE touch wood).
feels very inaccessible but I am hoping after that’s finished there will be more motivation to try and manage all of the issues from the lack of hormones 
Taking a day at a time, or trying to.
