@eils85 thank you for such a helpful response - the tips on what to stock up on and take are fab. I think my eyes watered a little when I read about your photo - what a lovely way to keep yourself going. Amazing that you managed to fit your wedding in. We were due to get married this year after 15 years together, but have had to push it in to next year as it would be right bang in the middle. I hope that you had a really lovely day and that it continues to give you courage and joy.
Im the same with reading at the moment - canāt focus. You made me laugh out loud about the colouring books, itās like they breed when your back is turned. I tried one and discovered I donāt like colouring in. Mainly because Im crap at it
It will be nice to have a wedding to look forward to when you finish treatment- double celebrations!
ditto the loathing of colouring in, my daughter however thinks itās great that we can now do it together so itās become a regular thing in this house. I can see how it could be very therapeutic but I just lose interest very quickly and donāt have the patience to colour in the lines
Hi @binky1 , glad you have a start date! Waiting is the worst!
Iām not on the same regime as you, ( docetaxel & carboplatin) but can say that with my infusion day I wore compression socks and gloves throughout to prevent neuropathy in toes and fingers, and also took ice to suck on and ice lollies in a cooler pack and had 2 lollies and lots of ice during treatment to prevent mouth ulcers and dry mouth and touch wood my digits and mouth have all been fine this round. I know it doesnāt necessarily mean it will work every time but Iām going to continue and think thatās that helped.
The hospital bits really chilled and quite a nice few hours.. I met a man who was on his 144th cycle ( every 3 weeks) and thought gosh I can do 6 if he can do that!!!
My advice for afterwards is just to have things at easy reach! Day after I was buzzing ( steroids!!) the the next few days I felt I had been hit by a bus! My body would not move no matter how much my brain wanted it to!! Be prepared to drink, drink, drink!! Flush those nasty toxins out of your system!! Every wee I had I felt better for knowing more of that stuff had left my body. I think in 4 days I did about 1000 steps altogether.. I bought complan drinks as I couldnāt eat very well due to my tummy hurting. That made a world of difference in how my energy changed but that could have been me recovering too..
the main thing is to tick off that first one and know each one from now is nearer to the end!
You will be fine, Iām sure and you have a beautiful wedding to look forward to.. thatās so exciting!
Iām planning my holidays next year.. keeps me motivated and stops you thinking about the obvious!!
Good luck tomorrow and hope you sleep well tonight!
Hello all, Iāve got my chemo start date of 30th June now, so I just squeeze in as a June chemo starter
Iāve been reading through this thread and really appreciate everyoneās input ā itās helping me understand what to expect.
Mine is a 30mm tumour, Grade 3 IDC ER 8/8, PR 3/8, and HER2+VE (believed node negative). The plan is Carboplatin and Docetaxel with Phesgo for the anti-HER2 treatment before surgery.
There was also mention of Zoledronic Acid for bone protection, but Iāve forgotten when thatās supposed to fit into the plan ā Iām sure the hospital will be able to remind me!
Thanks everyone who has shared their experiences so far. Itās reassuring to know there are others going through a similar journey, and Iāll be grateful for any tips along the wayā¦
Nice that youāve got a start date now to plan towards - gives you more of a feeling of control perhaps.
Re timing of Zoledronic acid - I mistakenly thought I was to have that after my 8 cycles of chemo (EC & Paclitaxel), but actually they gave me the first dose along with my first cycle of chemo. So future ones will be every 6mths for 3yrs. Of course, it may be different for you. Iām sure the oncology team have told you but try to get a dental / hygienist check up beforehand as itās best to avoid intrusive dental work after Zoledronic acid.
My zolendronic acid is not starting until the end of chemo so i think it varies (and is not urgent) so dont worry. Ask oncology again when you have an apptā¦theyāll know.
Hi @anyakuro I have very similar diagnosis 30mm tumour, grade 3 and HER2 positive and had 1st lot of chemo drugs that you are having couple of weeks ago which all went ok. I had different HER2 drugs to you which for me caused a reaction but the wonderful nurses sort it very quickly. At the moment feel almost back to normal and 2nd session next week. Wishing you all the best, the waiting is the worst bit as when you arrive you are so well looked after.
@beef2000 I never thought I would be relieved about chemo, but it is action and that keeps me going. I think we are similar in needing distraction to manage the anxiety. I have been watching a load of rubbish whodunnits post surgery.
good to know re EC, I wondered why I had an afternoon appointment, so hopefully will be done by teatime. I have decided not to cold cap, my oncologist said I wouldnāt keep my hair whether I did it or not, so I decided not to. But Im interested to see all of your results. I will be trying the cold feet thing/ compression when I get to the Taxol part as the neuropathy is something I would like to avoid.
On day four now first cycle EC and absolutely flattened but think itās the steroid drop and insomnia plus chemo. Very fortunate not to have been too nauseous or have gut issues yet. Tender mouth, but manageable. Main issue is smell, everything smells terrible to me, including me. I could smell a glass of water by the bed last night. Am eating but only food that doesnāt smell coco pops for lunch thenā¦
Start Filgrastin today, not looking forward to that. But the upside of the massive steroid doses is my inflammatory arthritis is taking a wee holiday, so Iām hoping that it doesnāt feel much worse than that coming back.
Much respect to those of you doing this with wee ones. Thatās a shift and a half.
I had a single dose of EC in April before my treatment change in May and I remember one day opening my fridge and getting a whiff of fresh strawberries and actually feeling like I was going to be sick!
I went off the taste of coffee for a few days too, which would just be unthinkable under ordinary circumstances.
That only lasted 5 days for me including treatment day so fingers crossed it improves for you soon. x
Yep, coffee is out of the window. Fingers crossed my tolerance will come back next week! Itās so odd. But on the whole itās tolerable and I have to remind myself that I wanted to do this, one year of my life for another 30 x
Good luck, the nerves are there for us all it seems. Just a big unknown and you hear all the scary things.
But the nurses will be so kind to you and talk you through what they are doing etc. The drugs they give you to manage side effects help and they will help you with any issue. I found the time passed pretty quickly.
The forums are great, I like checking the March threads as they are coming towards an end and loads of useful things in there x
Iāve got my second treatment on Friday, bloods tomorrow so just enjoying today (itās a rare sunny day in Scotland so weāve got the paddling pool and tunes out). For those starting soon I found the wait hard too but itās amazing how the brain just accepts the new ānormā and life goes on once you start. Iām writing off next week but will hopefully enjoy the 2 weeks that come after. Hair on my head is thinning but hanging on. Has anyone found a nice head covering that doesnāt cost a fortune and isnāt too flamboyant?
Hope you are all doing well. Feel I am comparatively lucky, Was diagnosed in March, had left breast removed and 19 lymph nodes removed from the left arm. Only found in breast and one lymph node. Tissue sent to the USA which gave me a score of 50, so I was told chemo was on the cards. I received a message from the Onco unit with a date of 15th July (but no other information) . Yesterday I went for blood tests and an appointment for the consent etc. It was there that I discovered that they had forgotten to contact me and the date sent is my second session and I was actually starting tomorrow (now today), so although I knew it was coming, I didnāt expect it as soon. At least I have not had much time to over think. Went in this morning for first of 3 x EC. (Too flipping hot to go and find my folder!!m Will have 3 x of the Doc one after the EC) Had 3 syringes red and one clear. Nurse sat with me all the time apart from when one gentleman who was also a first timer, had a reaction. The clear syringe made my nose block up until the saline was flushed after. 2 hours start to finish - decided against cold cap as I hate both the heat and the cold. I am trying to drink lots. At the moment I am trying some Pukka Peace tea which was donated in a treatment bag along with some other goodies. Not a fan of herbal tea at the best of times but this one is not unpalatable, so will stick with it as a change from coffee, water and tea. One anti sickness pill tonight, another one or two added tomorrow and an injection I have to do. Canula today, but will get a picc line fitted at some point before the 15th. Have been advised via a friend to get a prescription for a waterproof cover so I can shower. At this moment, I think I am getting more effects from the heat than I am from the drugs. Tonight I have 2 x freezer packs to wrap in towels to cuddle to hopefully help me sleep. I hate the sun and heat, so unless I have to, I am not aiming to go out tomorrow until around this time of evening to get a daily walk in - any side effects notwithstanding.
Wow what a day to start! You sound like you are doing good so far. Sounds like I am on the same plan as you chemo wise so I hope you have a good few days. I hope you sleep well in this heat xxxx
Thank you. A slightly fitful nights sleep but due to the heat I think rather than anything else. I am just trying to eat breakfast before taking pills - sadly I think Marmite will have to go for the duration. Tastes really odd this morning. I guess it takes time to work out what is more palatable. Just taken the tablets and some of the side effects are just like being too hot. Hope any side effects will be obvious. Stay cool x
coco pops for lunch thenā¦