May 2026 chemo starters

[poppy261]

Sending you a big hug for Monday @jordx90 . Make sure you do something nice tomorrow. Big Pamper Day.

Ive bought a Saline Nasal Spray for sore noses. Its helped a lot now my hair is leaving my body fast. (Very dry nose). I spray gently a couple of times, wipe away excess, then get a cotton bud and put some Vaseline just on the inside of each nostril to keep in the moisture. Seems to work. I bought my first bottle. But the Pharmacist said to mention it to the Oncology Team as they will add it to our prescription list if need be.

Virtual shout out to all you wonderful ladies for coping so well. This is no easy road, more like Climbing Everest during a Hurricane, and Avalanche.

[jordx90]

I was also panicking id get it and had a couple of days with a sore throat also but put it down to pax. Its so hard to know when to ring in or not.

Thank you poppy! I will ask on monday its super sore! X

[poppy261]

Re when to ring @jordx90 .

Ring for everything SMALL. Teams would rather catch a small problem quickly, than find a small problem has got out of hand.

They prioritise calls. So if they think you are OK, but need reassurance, you will be last on the list. But minor symptoms can quickly escalate with chemo as our immune systems are shot at.

So ring them, and let the Team decide for you. Even for your nose. Noses get very dry during chemo and can end up in nose bleeds. So, even call them tonight. Its 24/7.

Mine have been great for e.g. sore mouth (mouthwash given), hair loss (advice,) cold (chemo delayed).
They take us seriously and are grateful for us calling them.

[jordx90]

@poppy261 thank you. I did speak to them friday about my nose and they said about the vaseline but it feels so blocked and scabby so going to ask for a spray tomorrow.

Day before the dreaded second round however hoping because its pax alone its easier this week. Spending the morning blitzing my house and then sending my little one off with a school friend to sealife. Me and partner need to do a tip run and I might cook a bolognaise for some food prep. I hate that I feel myself at the moment but I know over the next couple of days that will change. Just frustrating! Hope everyone else is OK x

[poppy261]

You are one brave , and strong lady @jordx90

Going through this is a unbelievably hard, especially when you have young children. My heart goes out to you and your family.

Re Vaseline: I read something recently where people were grumbling about it not keeping chapped lips moist. And making them more dry. The explanation made complete sense……Vaseline is not a moisturiser. It protects skin from chapping, but only as a “preventative”. If the skin is unbroken.

I.e. if your lips are moist, but you are going out in the cold wind, putting Vaseline on them will “hold in” the moisture. Acting as a “barrier”.
However, if your skin is chapped, vaseline cannot ease that. You need a moisturising, antiseptic balm first, then Vaseline after its healed .

It made complete sense. It said people used it, incorrectly, as a lip balm/soother, when it couldnt do that/wasnt designed for that.

So putting Vaseline on an already sore nose, potentially may not help it.

I bought Sterimar saline spray. To clean my nose, (now it cant clean itself very well as the hairs have lessened) and to keep it moist. I then put a small bit of Vaseline just inside my nostril, to “hold in” the moisture.

But if your nose has got very sore and damaged you may also need an antiseptic cream to help moisturise and heal it first. But Oncology would need to check which one is safe with chemo.

I would use Savlon cream, but someone on this Forum couldnt use Savlon until after their chemo. Not sure why. So you would need to check.

I get severe eczema on my hands. I tried all the emollients given by the GP. Nothing worked, it got worse. On reading the small print, (I had failed to do that thinking the GP would be right…blind faith)….it said “dont put on broken skin” . Eczema IS broken.

All the emollients were doing, (that were like Vaseline), was aggravating the eczema, not making it better. My skin became really swollen and infected.

It was only useful once my skin was fully healed. As a barrier only. To protect unbroken, moisturised skin.

I went back to the GP and told him, the only thing that was working, was Savlon, that was an antiseptic and moisturiser. He, looked abit apologetic, and prescribed an antiseptic cream wash after that.

I think “Vaseline use” is getting very muddled nowadays. So its fine to challenge things.

Sending you a hug . Hope today goes well and Tomorrows treatment, treats you kindly.

[wibbles]

@poppy261 if your eczema breaks out on chemo take picture to show your oncologist unless you need to call the 24/7 hospital chemo helpline first. Bear in mind Ìt could be a delayed adverse reaction or skin reaction to the chemo itself. It’s okay to call and get the hospital to check with you.

My oncologist sorted out prescription soap substitutes and an emoillent my skin could absorb which has made a big difference. Your GP will not be as good as they lack the chemo drug experience .

Ps try a really good unscented beeswax and honey lip balm - have found that helps with chapped lips and chapped nostrils thanks to lack of nasal hair.

[poppy261]

Thats a really good idea @wibbles . Thankyou so much​

I must admit I am cautious of all my weaknesses coming to the forefront during chemo. Especially with Pac.. Which is the next drug on my list . The hand eczema is awful when it rears its head. And painful.

Cant say my GP ever got my meds right. I had to be the one to lead the way. But thats not good when symptoms get worse and they do nothing helpful.

The 24/7 Nurses have been great though. I ring them about anything small now. They got my mouth sores straight away. I use all the mouthwashes as preventatives now, which is helping keep my mouth, ulcer/sore free. Save the odd brief eruption thats quickly sorted.

But its hard, isnt it, as I would never ring people this much. Im very self sufficient, but by ringing them straight away has meant they are ontop of most things now. Fingers crossed.

Im also prone to cold sores around my nose/lips. So Im hoping I can minimise their impact by using preventative measures. There is Sooo much to think about. Brain gets scrabbled

Ive been really organised which has helped immensely, but I think, the fatigue has put my body in such a “battery drained mode even after a recharge” this week, that trying to be on top of everything in impossible. Its easy to think….thats it … had enough now. run away. Or sleep Or Hide.

But I tell myself…..With my immune system getting more shot at, as the Treatment progresses, the more I “prevent” the better.

Im use to just letting my body get on, sub consciously/ automatically, with anything thats thrown at it, it’s very counter intuitive having to realise it may need a bit more/lots more, help from its conscious partner.

They never told us we were signing up for a PhD in Cancer Treatments

[elastigirl]

Hey there. Joining in x I had my shock Her2- ER & PR 8/8 bc diagnosis in mid Feb x Bilateral therapeutic mammoplasty with full width incisions and full left axillary lymph node clearance op on 30th March. Started my chemo May 12 and I’m into my second dose of EC. I’m really feeling it this time. - Felt like I’d handled the first dose okay, but Also the pelgraz injection is causing me terrible bone and muscle pain across my chest this time . has anybody had that? Kind of feel numb with the chemo as well, so much fatigue this time, but is anybody having steroid insomnia? OMG the lack of sleep at night from the dexamethasone is just hideous they’ve given me sleeping tablets but I’m really terrified to take them. Any help greatly appreciated from my fellow troopers.

[dcfc84]

Hi there @elastigirl

I’m currently days away from my 3rd EC treatment. I’ve had similar chest aches from the injections, also pain in my arms when I’ve rubbed them with soap during a shower . Paracetamol helps somewhat.

With regards to the steroid tablets, the nurses advised me to take them no later than 4pm or they will keep you awake at night and I’ve not had any issues with sleeping. I only have them for 2 days following chemo, it’s the injections I really hate!

[poppy261]

Hi @elastigirl welcome to the May starters. So pleased you have joined us.

Ive just had my second round of EC. The third is this Friday. Feel free to read through previous posts that detail symptoms abit more.

But re fatigue….yup….its been a killer for me this time round. All I have been able to do is sleep. . I do little jobs around the house, eat, drink, TV, then bed. I just gave into it. This second week has been better (able to drive/see friends etc), but im finding doing more things means I still need afternoon naps. So I have them.

Re steroids: I have them for three days after treatment. But was told to only take them at breakfast. I slept like a log after treatment, for a full 9-10 days. All day!!! So perhaps speak to 24/7 and see if you can have them at the start of the day.

Re pain…. Luckily I have just the one injection that, to date has given me no pain. But numerous ladies on this Forum have had pain from the daily injections. I think everyone should be on the once only injection. The others seem really tough.

[want2beme]

Hi, wide awake here cos ive finished my nights of strong drowsy nausea tablets for this cycle. Having similar sore chest and arms, actually thought it was because I did a long drive yesterday, but must be from the neulasta injection! Was expecting to feel the pain more in my legs and hips. I had no bone pain first cycle but i did take claratin for 3 days and have only taken one this cycle. My mouth is so annoying, my tongue feels massive tonight and I cant taste my food at all i really love my food . I do have BMX mouthwash. Im day 5 on my 2nd AC cycle and nausea hasnt been as bad this time, i think due to taking nexium for acid reflux. Had a great day today, almost felt normal. Hoping i dont get a sore throat again tomorrow. Anyone any tips on preventing the sore mouth progressing into the sore throat please?

[cazgib10]

Others seem to rinse with bicarb and salt water

[poppy261]

Hi @want2beme . Glad to hear you are surviving and had a “near normal day” . We surely need those dont we.

Re Mouth problems…something I have often.

My Oncology Team gave me three treatments on Prescription, and advised another two.

Their mantra has been: keep using them all as a preventative even if my mouth is OK.

But also use when I have break outs.

Prescription ones:

1. Difflam Oral Rinse….benzyclamine hydrochloride.

2. Manx Healthcare…benzyclamine hydrochloride mouthwash.

3. Gelclair…concentrated gel oral rinse.

4. and 2) are basically the same, but i have found 2) to be better for preventative. . No idea why. I use it daily. After ive brushed my teeth.

5. can be watered down into a rinse, or it can be applied like Bonjella.

I used 3) like Bonjella to compliment with 1) and 2).

You can gargle with all three, to help sore throats.

Other advice:

4. Use salted boiled water throughout the day, to rinse/gargle.

5. effervescent Vitamin C tablets… NOT to drink as too much extra injested Vitamins can react with chemo…..so JUST use as a mouthwash. Some studies have shown Vit C washed around the mouth can help heal sore tissues.

So, I use a mixture of all 5. Throughout the day.

I have a ready made up cup of salt water, and the same for the Vit C. (1/2 tablet is enough for a small amount of VitC oral rinse) Then im not needing to mix them throughout the day. I change them daily.

Some days Im too tired and Ive forgotten to be so “on the ball”. But, saying that, if my palate gets tender, I can quickly get on top of it.

My first ulcer lasted 6 days approx. My first sore mouth, the same.

Ive had no more ulcers, touch wood, and my reoccurring tender mouth, never gets past the first “ouch”.

Im not saying that ive cracked it by any means, as I am hearing Pac can aggravate mouth/throat problems (it is my weakness as well), but at least I have 5 things that compliment each other and help reduce problems.

If you cant get Oncology to prescribe them for you…..they seriously should and I would insist they DO….you can still get at least 1) 2) 5) over the counter to tide you over until Oncology sort it out.

But they are expensive, and any treatment needed to cope with chemo side effects, are all free on prescription. So push your Teams. Cancer is expensive. You need oral care provided for. It can ruin your day.

My other advice is to cut out sugar as much as possible. I always get sore mouths from boiled sweets, toffee, heavily sweetened chocolate, sweetened biscuits/cakes, sugary drinks, jams etc.

Normally chocolate is OK but Ive found even having a chocolate croissant will creat an eruption at the moment. Sugar is a serious “be careful”.

The less sugar I have the better I am. But I love chocolate, so I have to make sure I brush my teeth after having any. Its a bind I know, but its either ulcers/sore mouth, or a clean mouth with yummy treats allowed.

I start Pac in 4 weeks. I may have a different story to tell.

I know numerous ladies have struggled with Pac. Which shocked me as I thought that was the easier one.

As an add on:

Re injections:

Ive only ever had Pegfilgrastim.

Its a once only injection for White Bloods. To date (I may have been lucky) Ive had no bone pain that a lot of you ladies describe with the daily ones. My bloods have been on the low side but in the Green Zone. So fine.

I would ask about this injection. It may not be suitable for some women, hence why so many dont have it, but if its merely a financial Trust Thing, Id push for it. We go through enough pain without making it worse for us.

Sending you strength and determined vibes.

[poppy261]

Ooops formatting did its own thing once I pressed send​.

I was soo organised.

Its NOT….. 4 and 2 are the same.

Its ……1 and 2 are basically the same……

[poppy261]

Pps

Its NOT 5 can be watered down.

Its 3 can be watered down.

I should have just kept naming them. I was trying to make it easier to type. silly me. Tech is so helpful. Not.

Youll get my gist anyway.

[want2beme]

Thanks @poppy261 thats great advice and a great breakdown for me on mouth aids. I really appreciate it. My tongue was sore today so i tried a few of those and ive had relief between . I must do more prevention. Hope you are doing well

[poppy261]

Yes @want2beme prevention is a huge part of managing it all. I never would have thought of using those types of mouthwashes as preventative. I only ever saw them as a “cure”.

Nor would I use a mixture of 5 different washes throughout the day.

But it definitely helps. If I am abit lapse some days, I get a quick kick back, so I have to be ontop of it.

We are fighting against our bodies being attacked by chemo. So we have to think and act differently.

I find that counter intuitive a lot of the time. But I do understand the reasoning, so I do it.

I have third EC on Friday. So another week of sleep. and running to the loo . Looking forward to it

Tough going isnt it.

Although we feel rubbish with it all, and our bodies feel like they want to run away, we must keep telling ourselves how strong we are for getting through this.

Just surviving a day is a huge achievement some days. Thats strength.

Power to us women.

Sending love and encouragement to everyone. xxxx

[big]

@poppy261 Good morning …. I’ve read your advice on the different mouthwashes, etc with interest as the ‘mouth and tongue’ situation is something that I’ve suffered with massively on Paclitaxel and now doing so on EC I never thought about using all three of my prescriptions together as preventative!! Thank you so much

[poppy261]

Keeping my fingers crossed for you @big in the hope you get some improvements.

Painful mouths are awful, and can drag us down over time if we cant get ontop of them. So Im really rooting for all you ladies who have this problem, in the hope you get some relief from an often, very hidden, side effect of chemo.

[sat]

sorry just jumping in from january have you tried antihistamine before your injection?
regards to chest pain also speak to the on call team i got told off by my chemo nurse for not doing, my pain was always around my abdomen so used buscopan which helped immensly