February 2024 chemo starters

[salbert]

Hi everyone

I got diagnosed on 9th November and have had 3 ops so far but they still haven’t managed to remove all the DCIS so I have switched to Royal Marsden in Sutton and we are now going with systemic therapy first and I will have a mastectomy at the end. I had a tiny bit of Grade 2 invasive cancer but it had made its way to 2 lymph nodes, probably due to its HER2+ status. Apparently these are fast moving little buggers, so I’ve also had the lymph node clearance.

I am starting chemo on 22nd February and will have Epirubicin and Cyclophosphamide once every 2 weeks for 4 cycles followed by Paclitaxel once a week for 12 weeks.

They are testing the lymph nodes and if they confirm it to be HER2+ I will also get the Phesgo injections. This is because my invasive bit of cancer was only 2.3mm so they want to be sure it was that bit of cancer that was HER2+ and not the DCIS. Then radiotherapy.

It’s daunting, isn’t it. I’m on holiday in Devon but I get back in 2 days and it’s full steam ahead with MUGA heart scan, portocath fitting etc and then treatment itself. I am reminding myself constantly that I am lucky that this was found and that we live in a day and age where it can be treated. But still, it’s all a bit surreal and I can’t quite believe it has happened at all.

I REALLY don’t want to lose my hair but I will be rocking some fabulous wigs if I have to.

Love to you all,

Sal
x

[starapple]

Hi Vibby,
I will start my chemo as well on 15th Feb with the same chemo drugs.
I’m quite nervous and is overthinking of all the side effects discussed by my consultant and nurses.
I hope and pray that our first cycle goes well and is manageable.
We can do this!

[Vibby]

Hiya,
I know !!! It’s so odd to think that I feel well at the moment and I’m going to do something that’s going to make me feel poorly.
I’ve just been to have my nails and brows done, plus wig appointment tomorrow. I’ve bought loadsa turbans, scarves and hats off Vinted.
PICC line went in yesterday and I’ve sewn matching PICC line covers
Never has a woman put in so much prep for chemotherapy !!!
I’ve cleaned the house, double food shopped, stocked the freezer, feel like Im getting ready for either a major day out or WW3 !!! And packed my chemo bag !!
I know it’s about loss of control, but it helps me to feel ready for anything

[sammybp]

Ha I was the same, prepped for everything. I love your positivity and enthusiasm in approaching this part of the journey.

I started to feel back to myself Sun and got out for a good walk for a couple of hours. I did have a cheeky snooze when I got home. Im also going to a party on Friday so going to let my hair down (no pun intended) before my second treatment.

Good luck and do keep chatting to us all. I love to hear the positives and also hints and tips sharing.

Lots of love to everyone x

[Vibby]

It’s so weird not knowing if your going to be badly effected or not, hair or not !!!
My biggest fear is diarrhea (I already have a severe pancreatic insufficiency that keeps me in the toilet some days) and nausea as I can’t vomit after gastric bypass surgery !!!

[kitty77]

Hope all goes well for everyone this week.

I’m the same with preparing at home before my treatment starts.

Bought all manner of lotions and potions and mouthwash and tablets etc to hopefully get on top of side effects.

Deep cleaning the house a room at a time and been for wig fitting (I’m having my hair cut short next weekend). Today I’ve done a couple of online shops to stock freezer and cupboards as much as possible . Mainly this keeps my mind from going into overdrive if nothing else!

Trying not to think about all of the potential side effects, I had a bit of a panic attack when I had my CT scan so no idea how I’m going to manage chemo!! Just getting through one day at a time - it’s worked for me so far.

This thread has been very helpful so far being able to read how you are all coping having started chemo - it’s definitely eased my nerves a little bit .

Xx

[kitty77]

Are you all taking your temperature on a regular basis or just if you don’t feel great/have symptoms?

I need to buy a thermometer that’s still on my list of to dos.

[sammybp]

Hi kitty77,
I’ve taken mine if I need to take any painkillers. Unfortunately today mine was super low so ended up in the assessment centre. Sent home with antibiotics as my white blood cells are too low.
I’d recommend a decent thermometer just to be on the safe side.
Good luck and let us know how you get on x

[Vibby]

I was given a chemo comfort bag and it includes a digital thermometer. I was told to take twice daily and to ring the chemo hotline if above 37.5 or below 36

[Vibby]

I’ve done so much prep !!! Nothing else to do as I have the luxury of not having to work during my treatment.
I think it helps me regain some semblance of control

[kitty77]

Thanks ladies - thermometer shopping for me tomorrow!! Hope the antibiotics kick in quickly @sammybp.

@Vibby I totally agree with doing all the prep to get some sort of control. I think that’s why I’m opting for getting my hair cut before treatment starts.

Xx

[starapple]

It’s true. Prepping is a must. It feels like we are going in a battle and making sure we have all the weapons ready.
The only thing I don’t have at the moment is a wig. I had my haircut done-short bob. And I will be opting to use the cold cap. I hope I can keep it on all the way.
PICC line insertion tomorrow.
My chemo bag is ready for Thursday.
It feels good having you all sharing our thoughts and experiences.
We can all do this!

[SL255]

Hi Kitty,
Hope you might share some advice given your recent clearance of nodes.

I have been diagnosed with a regional recurrence following one enlarged lymph node which I have found out is positive for cancer. This was following a mastectomy two years ago and clear lymph nodes after the op when they took out three. Initially I was diagnosed with 8cm DCIS and they found 5mm of IDC after mx. No chemo at the time as oncotype wasn’t enough to register. The new affected node is on same side as mx despite clear margins when I had the op.

I am getting full node clearance now following this latest discovery despite the very small odds. then chemo then radiotherapy. What is the surgery like and how was your recovery? Any tips? worried about so many nodes being taken out and also what they will find.

Thank you and best of luck with your treatment

[kitty77]

Hi @SL255

I had my full node clearance at the same time as my WLE. The operation went well - I went down to theatre around 2:30pm and I think I was awake in recovery at 5:30pm and I went home from hospital around 7:30pm. So I would expect your operation might be quicker if it is just the lymph node removal.

In terms of recovery the one thing I would say is try and do the exercises you are given every day as they really do help with recovery and range of movement- if the exercise are painful then maybe take it down a level and build up gradually.

I wasn’t in much pain after surgery - of the meds I was given when I left hospital I only used Paracetamol, I never felt I needed the Codeine.

I didn’t have any drains fitted after surgery so didn’t have any issues with that but I did get a seroma (build up of fluid) about a fortnight after my operation - this was a bit uncomfortable but not painful - I rang my breast care team and they looked at it twice but felt it didn’t need draining and it has now completed disappeared.

I am still having physiotherapy for cording under my armpit - this initially stopped me doing my exercises as my underarm was really tight so I couldn’t raise it to required positions.
The physiotherapist has worked wonders so far with this though and the cording has almost gone completely- if I had to describe it, to me it was like a couple of guitar strings pulled really tight than ran from my armpit down the inside and underside of my arm. Again it was never really painful just felt tight and restricted slightly when I was trying to raise my arm.

The physio was a little bit uncomfortable initially and I used to take a couple of paracetamol before each session which helped.

I also had a lot of numbness under the armpit and a sensation on the top of my arm that felt like it was bruised (although it wasn’t to look at). Sensation is now coming back in my armpit but in certain areas it still feels a bit numb.

Other than that I have not had any problems so far - you will be advised to wear gloves when cleaning and gardening in case you get a cut or scratch in the arm as that can lead to infection and also be careful with what you lift and do with that arm too as we are at risk of lymphoedema.

All in all I would definitely say the operation and recovery was nowhere near as bad as I had imagined and I can now do everything I could before the operation - just got to be a bit cautious with lifting etc.

I had 17 nodes removed (I think everyone is different in terms of how many nodes they have) and 6 showed cancerous cells.

It’s scary when lymph node involvement is mentioned but I have been told by my nurse and oncologist that this does not change my prognosis and my cancer is still curable - just have to throw everything at it!!

Please let me know how your surgery goes and just drop me a message if you want to chat about any part of it or have any questions at all.

Xx.

[Vibby]

Talk about wearing makeup as armour !!! I’m just off for my wig fitting, I’ve put on 3 times as much makeup as normal for day time !!!
When I go to hospital appointments I have to dress immaculately too. Trying to preserve the me that’s in jeopardy I guess

[SL255]

Thanks Kitty that was very helpful! Good to know as it is hard to get a recurrence so soon after mx. Glad op isn’t too bad tbh I found the mx and recovery grand and waa back in work after 6 weeks and delighted to be back. This time around not so fast but hopefully recovery will be ok.

How you doing now? Love to hear some positive stories.

[kitty77]

Morning

I’m doing really good at the moment just trying to gear myself up for chemo starting.

I had some free counselling from Macmillan as I struggled initially getting my head around my diagnosis - the not knowing and waiting for all my test results was the worst time for me by far!

The counselling is an option for everyone who finds themselves going through diagnosis and treatments and it really helped me.

I’m very nervous about the chemo but as I’ve said I think the not knowing is what affects me most. I’m hoping once I start and see how my body copes then the anxiety will go.

Good luck to you with your treatment, it’s really helpful hearing others stories and how they’re coping.

Try to stay positive - we’re all in this together and will support each other until we get through it Xx.

[Vibby]

How are you? Did it go ok ?

[sammybp]

Hi @kitty77 @Vibby , how are you both doing after your first session? I hope it all went as well as it could.
Take care and get plenty of rest x

[Vibby]

Had a slight delay during the epirubicin as got a rash over my chest/neck. They stopped for 30 mins gave me some IV piriton and it disappeared without any other issues.
Managed the cool cap, not very pleasant but stuck it out, felt more constricting than cold.
The 1.5 hours after the drugs finish was a temptation to ditch it, but I didn’t. Had icicles when it came off !!!
Now feeling pukey, knackered and muzzy headed. Taken all the anti emetics and forced down a tiny dinner of fish and drank a reasonable amount.
I didn’t realise how much fluids they give during the chemo !!! Had to get up to wee 4 times !!!
Feet were the coldest worse wooly socks with a hand warmer patch shoved down inside each sock.
Hoping the nausea and head feeling will improve.
2 days of steroids and heavy duty antiemetics and then 3 days of bone marrow stimulation jabs.
Fun fun !!!
1 done
And the staff were really good, attentive and knowledgeable, which made my psyche 100% improved. X