@anim4l what hair care products are you using it looks like your doing fab retaining your hair xx
@anim4l I think the weekly frequency means rest days are extra important, as you don’t really have days when you’re feeling totally normal or well - some side effects are at later end of week - and then you’re back in again for the next dose!
My rationale for resting for first 3 days is that the taxol is still in body and my liver and kidneys are working really hard to clear it. Plus, resting means taxol carrying blood is not pumped as thoroughly to my extremities during those 3 days.
I focus on fluids and protein for first 3 days - I eat whatever I fancy - our bodies are wise, so I trust any cravings. Have been going mad for cherries, rice puddings and oaty foods! Have gone off coffee.
Most of my cravings align with recommendations re diet on this website (not my only info source, but seems mostly reasonable) Foods To Eat And Avoid During Paclitaxel Chemotherapy | Food for Breast Cancer
Xx
Technically, the records do belong to the trust. BUT it is data about you - so you could raise a weekly Subject Access Request (not FOI).
I have encountered some reluctance to share, I think they sometimes think you’re checking up on them or don’t trust them. The way I argued for it with the oncologist was that I wanted to understand the trends in my blood (particularly white blood cells) so that I could make better informed choices about socialising etc.
They know I’m an ex-clinician, that may have made a difference too. Google DR and chat GPT can give really duff information which could send people into unnecessary panics, rabbit holes and ill-advised mitigations. I think they have been reassured that I have double checked with them before acting on my research for new mitigation approaches xx
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@buggeringon - thank you so much for sharing these really helpful resources, that website is informative and I’ll be checking the diet recommendations for starting paclicatel (I can’t find any for EC) but I do eat a lot of cheese, , butter I use in all my cooking instead of seed oils and asparagus so will have to have a rethink .
Yes- I think there is a resistance to give out info as they feel you lack trust , but it is my data and no one is going to put the effort in to track trends etc but me! I’m very concerned about infection control but I also have 6 months of chemo so I want to be able to socialise as it’s good for my mental health and having that info on my while blood cells is useful. I also want info n my red blood cells to counter anaemia.
Which other levels are you tracking? It certainly helps that you are a clinician. I’m relying on my knowledge of A level biology in 1995 and what I can find online - I think I’m better informed than the average patient but it’s frustrating as then ask the oncology registrar questions and I don’t get answers. I’m going to ask to see the consultant next week to go my first MRI result.
The info about resting is really crucial as the approach I’ve been taking on EC is to exercise immediately after infusion to get the EC circulating, it sounds like paclitaxel will need a different approach.
I’m keen to maintain my fitness as much as possible during chemo as I then have a mastectomy and node clearance, radio and immunotherapy to get through before 10 years on tamoxifen. I’m ER+,PR+, HER negative with a 8cm tumour that has spread to my nodes so I’m focused not just on treatment now but preventing recurrence - I’m pre menopausal as well at 48 so aware I need to be on top of things…if you have any advice I’d be grateful. Thank you
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@anim4l my starting position is different to you.
Was quite sedentary prior to diagnosis, spent pre op period boosting fitness a bit (but know I’ve got a long way to go). Have had the op, wherein they identified her2 positive, along with hormone positive- so herceptin and chemo added to treatment plan. Nodes clear.
I’m only having 12 weeks of chemo in total- so have accepted that I can maintain low exercise levels until chemo done - in the interests of minimising neuropathy (I think the compression socks, suzzipads for an hour before and after and diet changes are massively helping). Post chemo I’ll be swimming, doing chi gong and walking most days at a minimum - I’ll be on a rehab and improve fitness regime - despite the hormone,targeted and radio therapies! I think I’m going to be quite bloody minded on that front in the new year.
The treatments affect everyone individually and you might find after the EC that you feel far better on taxol and can do more than I feel able to.
I suppose what I’m trying to say is that you will find what works for you when the time comes. Hopefully, your side effects will be trivial and you can live your life as close to “normal “ as possible xx
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I’m also different in that I’ve had zero vaccinations despite best efforts. Plus re socialising- I’m a bit of an introvert and find people interactions quite draining in general. I also have a tendency towards wanting to hibernate in winter- I often resent being dragged into socialising in the winter months! So for me, the need to get out and about and see people in person is not a biggie. But I do understand that for the extroverts amongst us - time with people is really important for your mental health. Hopefully, they’ll get more open with you re your results so that you can calculate the risks for yourself.
One thing that I really had to drill into myself re infection risks is that we are being really closely monitored- so any issues should be picked up and treated quickly- before they become a major event. I can tell that you are proactive - this helps mitigate the risks too - don’t be afraid to call the helplines your treatment centre runs- they’d rather you called than wait until things are bad.
Xx
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@buggeringon I had a bit of a battle at first to get vaccinations. Gp receptionist was a real gatekeeper and just kept saying computer says no. I just told her consultant had said I have to have them and she eventually sent a message to GP who okayed it. In the end I actually had it done at pharmacy as was quicker to get appointment and they didn’t seem to be so fussy anyway. When I said I had cancer and was due to start chemo treatment that seemed to be enough to satisfy them that I was eligible. Have you tried just booking directly at a pharmacy if there’s one near you that does it?
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I’m in Wales, so system is different here. I’m certain my gp would if they could.
Good idea re pharmacy- the only thing is that now I’ve started I need clear guidance from onc team as to optimal timing and I haven’t been able to extract that from them!
I think this is one of those serenity matters for me - I would have far rather had them before chemo. Now chemo is underway I don’t think I want to add to general unwellness feelings. I’m also hibernating anyway - no kids or visitors bringing bugs to me, other half is being super careful and distanced at work. He’s also wearing ffp2 masks when he goes into shops etc. because my course is only 3 months and I’m not that sociable - avoiding mingling is an easy mitigation for me.
I will however still push via PALS and health board will be getting a letter too - if only to be able to prevent the same madness for future chemo patients. I really think they should have a named individual care services coordinator who makes sure that people get vaccines, dental care and exercise/diet and lymphoedema advice in a timely manner ahead of treatment - would remove a lot of stress for patients, be cheaper than dealing with treatment complications of preventable cause etc.
Yes, can’t blame you for deciding that, and as you’re happy to keep to yourself and just be cautious that sounds like a good idea.I’ll be doing a bit of hibernating too and as I’m not a big fan of Christmas it’s a damn good excuse .
We’ve got to be selective about which battles we use our limited reserves of energy on these days too.
Good idea to flag it up though, as you say, for benefit of others. It really shouldn’t have to be so such a battle.
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