May 2026 chemo starters

[poppy261]

Thanks for getting back to me @sam1204 . No problem with delay. You have other things to navigate, and life to manage so its not a problem.

We’ve been made aware that some peoples cancers, especially hormone positive cancers, can reacts to /feed off, soy /soy sauce, flaxseeds. Or the foods may interfere with chemotherapy.

So we were wondering if there were alternatives to, initially Soy Sauce in e.g. Stir Fries. As some people use it a lot in stir fries.

Its good to look at alternatives then we can make more informed choices.

For some ladies this would never be an issue, but for other ladies it could be. It would be nice to know if stir fries were still on the agenda, but in a safer way. I guess its like someone having to avoid peanuts.

In Posts 515 ive linked an article from Maggie’s that explains this further.

Any ideas welcomed

[sam1204]

@poppy261 i specifically asked my oncologist about soy products. My breast cancer is oestrogen fed (8/8). She said no need to avoid at all. You’d have to consume an awful lot of soy sauce for it to impact anything as it’s mostly water. Same with flaxseeds.

If you really feel the need to avoid it I’d use something like Henderson’s or Worcester sauce or even Marmite in place of soy sauce. Flax are quite unique in what they bring (Omega 3-6), but for an extra calcium boost I’d suggest sesame seeds as an alternative.

For soy milk, oat is the next best in terms of protein. Most of the others are almost 100% water, plus almond milk is very bad for sustainability (you need so much water to grow almonds).

Does that help??

[poppy261]

Thats great @sam1204 . Thankyou so much. .

I think its good to always have alternatives, then we can make informed choices.

Cancer is such a minefield to travel, and everyone reacts so differently to treatments, that its hard to navigate it all.

Im probably one who airs on caution mainly because its not a huge loss to cut things out for such a short while. Plus my Oncology Team, though lovely, do have varying views on foods etc., which I find tricky, as they dont seem very trained up in certain areas of research, hence why mine were so dismissive of cocoa even though you have seen clear benefits for neutrophils.

But a number of us have found Oncology Teams abit hit and miss on anything outside of the more serious treatments.

Equally, I keep trying to ask about Compression/iced socks and gloves, and they tell me they dont work. Yet some ladies feel they have had some success.

Seems a lottery.

So I guess on some things we just have to go with what we think is going to help us.

Your alternative suggestions are great ideas. So huge thankyou for sharing those.

[bea4]

Oh goodo! Non-Seville marmalade and soy sauce sandwiches for supper, then

[poppy261]

We are learning to walk the tight rope @bea4 .

Keep the sharing flowing. All thoughts welcomed.

[bea4]

Speaking of ‘ hit and miss oncology teams’ @poppy261 ……I’m not even sure I’ve got a ‘ team’ ! There are 4 Chemo Wards at the huge hospital I attend, with different staff in each one, and so far I’ve had treatment in 3 of them, a different Ward for each cycle! So I never get to know the - usually two - nurses running the show. They’re all very practical and efficient, but it’s a case of Get in, Get treated, Get out…Next, please!

There seem to be very wide discrepancies across the UK in the manner these units/Wards operate. I’ m not grumbling, honestly, but I am very curious!

Hope everyone is coping as best they can, sending warmest thoughts to you all.

[poppy261]

That makes it very difficult for patients doesnt it @bea4 . And very frightening.

Chemo is such a tough treatment that, to me, its really important that we speak to staff on a regular basis. My heart goes out to anyone who rarely sees their Oncologist, or has to see different people all the time. You have done incredible well bea4.

The last two treatments for me have been awful. But at least ive seen my Oncologist every two weeks to go over the side effects and feel reassured. And the 24/7 have also been reassuring each time Ive contacted them. They’ve acted quick for mouthwashes, creams, etc.

My hospital are very keen to promote BCNow Nurses and MacMillan. So I do ring them also to check things out and prepare questions before seeing medical staff. So I would urge everyone to make sure they use these charities fully. Im not sure if NHS commission their Services, but the promotional aspect of them within my Hospital would suggest they do. I think they fill the gaps that NHS cant do. But they are brilliant.

I have rarely seen a BC Nurse since my operation. I do feel abit in the dark as to who does what. As numerous ladies have said, when you move to Oncology they often wash their hands of us. But a monthly checkup to see my scar and lymphs would be good.

Us women are just unbelievably strong when you think about what we have to endure. Childbirth, medical complications, families, putting ourselves last, menopause, cancers related to all our female parts,.. When you think about it, its huge.

Its fine to grumble, fine to not cope some days. Fine to try and be positive to get us through a garbage day. Fine to be Billy Connolly extreme humour when we have to just knuckle down and push through.

Sending hugs and love

[baldiesrus]

Hello ladies, I hope that today is a good day for you all.

Unfortunately I had an overnight stay in my hospital Sunday-Monday. My heart rate was rather high and I felt shaky. I didn’t have a temp, but rang the number and was told to come in and go to A&E(where I was put in a separate room). I was then moved to the emergency floor 4 ish hours later. Interestingly the nurse on EF wondered why I had gone to A&E and not rung the number….I said I did ring and was told to go A&E she didn’t look impressed…..So if you get told to go to A&E, maybe double check that is really where you should go?? Anyway, they kept me in as I was there last cycle for a few hours too. They gave me 3 lots of antibiotic drips, and 2 saline, just in case I did have an hidden infection somewhere. I was promptly kicked out at 9am by the Doctor on shift (whoop whoop). He seems to think, as I do, it was more a reaction to the nasty EC( accumulative effect). So I a very glad that was dose 4 and I am hoping my heart rate starts to get back to normal (as its been running on the high side since starting EC). The things we are putting our bodies through, hey ladies. We are all so very strong, even when we are having a bad day. You fabulous, ladies, whoop whoop

Anyway, what gets me, is that every doctor I have seen in the A&E or emergency, always peer at the picc line and ask, “when was that put in?”, and “we don’t like using the picc line”. Some have said the Picc line can have bacteria growths and that can mess up the blood tests. OMG This time round, I had bloods taken 3 times on the same day. Once in A&E from the picc, as I asked them to use it lol, and twice on the EF….there they did one lot from Picc and the other from my vein of the same hand….so they could check the picc wasn’t infected. Just as well I had all that fluid put back in Refreshingly, the Doc that sent me home said my Picc line site looked good….but yes, even he asked when it went in .
Taking things very slowly again today. Hmmm a part of me wants chemo on Monday( you know, to keep it moving along as quickly as possible), another part secretly hopes my bloods will say wait another week, to give the EC longer to vacate my system. This one was definitely the worst cycle.

Going to fill my freezer with ice packs on Saturday ready for Monday just in case. I will wear my surgical stockings during treatment and ice my feet…a thin pair of gloves on my hands and hold an ice pack….I can put them down/lift feet off, when I am too cold lol….my hands and feet get cold very quickly Easier to run off to the toilet too…..Don’t know if it will be as effective as the special gloves and socks though. I am hoping cold is cold lol. Good luck to everyone moving from EC to whichever one you have next. May the effects be nicer.

I think that we should be seen by a BCN or Doc maybe 2 or 3 months after we have had our surgical results back. I was still swollen and bruised. Things have changed in size and shape since then. A quick check of our physical scars would help our mental scars too. We will need to heal our minds too at some point. My mind has hidden that bit, deal with the physical side right now (as that is very hard anyway), and deal with the emotional and other stuff later on…..one hurdle at a time…..I love my brain sometimes .

Sending hugs to all, we can do this, one tiny step at a time!

[poppy261]

Sending you a virtual hug and love @baldiesrus

That sounds like a couple of even tougher days. . As if the EC isnt enough.

I agree with everything you say. Goodness dont different medical staff send us in a spin. . Not liking PICCs. . That’s not what you want to hear when your heart is racing. In the old days they told us nothing. Nowadays they tell us things that are not helpful.

PICCs are always a possible problem, hence why we have to be careful with them. But they stop eternal needle vs vein battles. Best of a bad lot really.

I can completely understand you wanting a week off. We get shattered by the 4thEC. I was like that this week. “Please please please Dr just one week” . The answer was a “No, we will charge on through”

You make sure you rest up as much as possible. Thats how I cope. Rest, surface to eat a good healthy diet with extra protein, drink like a fish, then slump back into my sloths bed.

Go easy. Thinking of you.

[baldiesrus]

Thank you sweetie.

I sometimes wonder if certain Doctors worry about the picc lines, as not all the staff seem to know how to use them….which is a worry all round I do think that in a hospital that administers Chemo, all the staff should know how to use all the various ports etc used, especially if also an A&E hospital. Even more for us to worry about lol

Definitely taking things slow and steady. Not sure how those amazing ladies that work and /or have small children to look after do it. They deserve a medal. Much respect to those warriors!! The joys of teenage lads….you’re lucky if they grunt at you. They only chat to you when they want something or to show you something lol.

Thinking of you too and your new drug, I think you may be due it this week??. Good luck either way. Hoping this one is more gentle for you too

Keep cool in this weather too. I am loving the electric fan, despite the noise lol Feet in cold water is also pleasant…if you can find a nice shady cool spot in the garden, an added bonus Ironically, I live a short walk from the sea…..but won’t paddle in case I catch something. We have lots of things to look forward to once our chemo journey is done.

[poppy261]

Teenage boys. They are the best arent they @baldiesrus .

I think all you mums do an amazing job, juggling families, work, children, teenagers. . I know some people are fine on chemo. Everyone is different, but on this Forum, I think most find chemo tough. So huge respect to you all. .

I have 1st Pac on Friday. So Im busy stocking up with ready meals, frozen goodies, variety of treats to get me through the worst days. Toiletries etc. . Busy with Hospital appointments everyday, bar Thursday. . Such an exciting new social life we lead ist it.

To date Ive not been hit with hot sunshine. awful sweltering weather. Ive been happily stuck under cool clouds. Its been bliss. . Long may it continue. So I can go out with wig on and be totally fine. . But if the heat creeps my way, my fans are at the ready. My old car has air con…its bliss. Great for long drives this week pre chemo. …And Oncology also has air con so Friday should be fine….except for the yeuk chemo .

So, generally, weather wise, I feel quite lucky really. See what Friday and Pac brings.

And yes, 8weeks to making new adventures. . A walk by the sea will seem like a holiday in the Bahamas.

Sending love, strength, cool days, TLC, to all you lovely ladies.

[Jaybee]

Hi sorry not been around I am on weekly pac did 3 weeks then week off due to holiday in Wales. Next session Thursday this will be my 6th lot, so we are nearly half way. Side effects very tolerable so manageable - sorry to all you lovely ladies on the hard stuff. Good luck on the pac. Take care x

[poppy261]

Holiday sounds wonderful @Jaybee . Wales is a beautiful country.

So pleased that you are finding Pac more tolerable, and that you are speeding through it. . That must have been a huge relief. Good luck for tomorrow. Hope the heat is manageable. Great excuse for ice creams, ice buckets for feet, and ice packs for body.

Thankyou for sharing. Im having Pac fortnightly. First one on Friday. Im secretly hoping my bloods are down this week, so I can have a week off.

Take care. Sending you ongoing strength and love.

[poppy261]

To all you lovely ladies out there…heatwave has arrived.

If anyone has any good ideas to keep cool whilst on chemo, please share.

Ive heard about:

.. ice packs wrapped in a towel.

..ice/water, in a bowl for feet

..

..ask the hospitals if you can take cold caps home with you

Stay cool, stay healthy, and enjoy the sunshine, sunrises and sunsets..

[alannah172]

Hey you lovely lot sorry I’ve been a bit awol the last couple of weeks. I’ll read the thread fully later and catch up

@poppy261 my clot is all under control now and I definitely caught it early I think.

My last EC infusion was Monday and I start the bloody injections tonight, but I only have to do 5, then no more

Weirdly, not sure why there’s such a gap, I then start my Taxol journey on the 28th July for 12 weekly infusions … then it’s over

I’ve been told that nausea decreases, but the muscle aches increase. Since I get awful bone pain with the injections, I think muscle pain will be more manageable or am I kidding myself??

@poppy261 my eyebrows are nearly all gone now too

I’m dreading the heat coming back!! But I spent last week doing up the small area outside my back door and making it shaded and pretty (I’ve meant to do this the last two years ). I’ve even put in a little planter pond with a fountain so that I hear trickling water

Stay strong girls, we’re getting through it slowly but surely

[poppy261]

Hi @alannah172, lovely to hear from you. Going awol is totally acceptable and understandable. Chemo is tough and we all deal with it in the best way we can.

Your area outside your house sounds lovely . Water features and shade are perfect for hot weather.

I could be wrong re injection timings, but I heard somewhere they had to be so many days after treatment, as that is when the chemo makes white blood cells decrease. So the injection gives bone marrow a helping hand, at a crucial time, to make more WBcells. But I have the once only injection, and I only take it 24 hrs after treatment . So that confuses things.

Fingers crossed your bone pain is tolerable. Its a right savage thing on top of chemo. I get nothing from the once only injection. . Seems mean to put you through it when theres a kinder alternative.

Hoping your last EC is kind to you. It’s such an awful treatment, so sending you extra strength and love . All we can do is give ourselves lots of TLC pamper times and know it will be over soon. Rest as much as you can.

Im going to a pamper day at my local Cancer Charity next Tuesday. Fingers crossed Im well enough to go. . But they talk through eyebrows and eyelash makeup, and give us freebies to bring home. So I may just use some of those. Mine are barely existent now . But sunglasses are great for hiding them.

Ive still got that peach/bum fluff on my head . It moves about in the breeze which feels really strange. .

And i keep getting hot flushes at night, but I thought a bald head would keep me cool. . So whats all that about. .

So pleased your blood clot is under control. Thats great news.

Strength to all us women hey. . Lets beat that cancer.

[wibbles]

@poppy261

body.

Thankyou

@poppy261 you can sign up for health heat alerts from the met office. Current ones online here Heat health alerts | UKHSA data dashboard

Please note whilst it uses a yellow amber and red warning system with advice this is triggered below the standard weather warning system for the general population without health vulnerabilies.

Advice on keeping cool in Uk heatwaves may be found here. It links to other reputable Uk sites and this is advice for nhs and related health etc to follow. Heat - GOV.UK

[poppy261]

This is really useful @wibbles . Thankyou

[baldiesrus]

Morning, I hope today is a better day or at least more manageable for those that are struggling. big hugs to you all.

I love a water feature….mind you all that running water would make me want to run to the toilet. Saying that it doesn’t take much to do that these days. Oh the joys of our treatment

My fuzz on my head also feels funny when the breeze catches it lol. It can also make me feel cold at times (I’m a born coldling lol). Hubby laughs when he sees me wearing a fleece hat on a hot day…..I would be sat in the shade too lol

There are some good cancer charity sessions out there some are online some are in person. I did a pre-emptive strike, and did a skin and make up session….It was great, free products and how to use them. I learnt how to do eyebrows….( mine are looking a bit thinner now, and my eyelashes are a bit gappy), I did an online one regarding hair and scalp care. Learnt a lot on that too. I have eczema on my scalp and face, so wanted all the help in advance that I could get. I did mine though Lookgoodfeelbetter.co.uk They do a few other courses too. Anything that makes us feel more confident in our bodies can really give us a boost.

I do worry about blood clots a lot, especially as I have a picc. My mum had a Pulmonary embolism when I was little. I know her situation was completely different, but the thought is never far from the front of my mind. The brave ladies that have had to travel this scary journey need extra virtual hugs. I found it very helpful reading what to look for on here, so thank you to all that have shared. The bad and good helps us all, thank you

So fed up chemo tongue and of food, not really helped by the hot weather. Salad is utterly disgusting for me. Even chocolate is soooo disappointing!!! Last night I had a very big bowl of blueberry shredded wheat with lots of milk. I had to force it down. Milk has protein, so a little bit of goodness LOL. I wish I had a big kitchen then I would have space for a gadget to make smoothies….but no space in fridge or freezer for the fruit either. Does Pac make things better, worse or no difference to chemo tongue I wonder?

Anyhoo off for my blood test today to see If I can have Chemo on Monday. @poppy261 I wonder if you are also going for a blood test today ready for tomorrow? The problem with Monday chemo, you have your bloods done earlier than ideal, as they don’t do them at the weekends. to everyone have theirs done too, hopefully you get a good result, cos that’s one less thing to worry about.

Keep cool ladies, if you are having the heatwave. If you haven’t seen the sun in ages ….I’ll try and send it your way lol

[poppy261]

Hi @baldiesrus , I can completely understand your thought re PICC. Blood clots are serious things, but they do seem to have faith in blood thinners nowadays if a clot happens, and staff are very quick to act... But like you, I am alway cautious of my PICC. But they struggle to get my veins, so TBH its better than weekly invasive digging and pocking. .

Ill send you a quick magic spell to make your kitchen and freezer bigger. . Milk smoothies are the only thing I can tolerate in the mornings after chemo..

Joys of living on my own means my small kitchen is all mine . Yin and yangs . Ask kind hub to buy you a camping freezer for your outside haven . It could be your personal smoothie retreat for chemo week. Or it could risk being swiped by Smoothie Thief so perhaps not.

Pac is suppose to make food taste like cardboard and metal. . Cant say that thought fills me with joy.

I had bloods yesterday. Odd as normally its the Thursday before the Friday. I keenly rang this morning, secretly hoping my HB and WBC were too low…really wanted a week off. . I was told to ring tomorrow morning at 8am before chemo at 9am . Trying to figure out their logic. . I could easily ring this afternoon.

Hoping yours are OK. Unless you are like me .

Have you tried concentrated VitC effervescent tablet mouthwash for your tongue?? I have to put a 1/4 small cup of water to 1 tablet. Then rinse with it throughout the day. Strangely, supa concentrated helped my tongue/mouth. I also used Difflan as a preventative alongside. But for a week, I didnt need Difflam.

Chemo is rotten as it targets our weaknesses doesnt it. Im worried about Pac as my hands and feet have flared up this week with eczema…chemo related.. I bought silk moisture gloves and socks to help alongside creams. They do help. Im keeping the eczema stable rather than it cracking and bleeding. My hands are like snake skin in its shedding phase . I also need to put more cream on throughout the day…but sometimes I forget. But nighttime moisturising has helped a lot with silk socks and gloves. But this heat around the country could be uncomfortable for some ladies if using socks/gloves.

You can get silk chemo night caps from Jasmine Silk. Maybe one of those could help with eczema on your scalp . The silk holds in the moisture more.
Some ladies say silk caps on hair makes hair smoother and more conditioned. Obviously us baldies cant test that out , but it may help scalps.

Hoping you are coping with the heat. . Ice in a bath sounds lovely.

Sending love, strength and eternal creative ideas to beat this chemo challenge. .