Good Morning and thanks Ake for sharing your experiences and reflections.
I started to read September thread - and popped over here from (early) October starters as I am starting 2nd cycle today and wanted to see how September starters are feeling/doing. And yes completely fine to not feel ok about this heck of a scary and tough treatment. Sorry you had all the side effects. I too ended up in hospital in first week, neutropenia- but it settled with 2 additional booster injections.
Apprehensive about today and will be thinking of you all. Feeling sad sometimes when the treatment makes us so sick, so letās hope it will be (better!!!) worth it- bloody hell fire! Sending (if ok) a big gentle hug to all of you and hope it is ok to write here as well. Canāt sleep - blaming the stupid steroidsā¦ and will try some music and holiday draming now maybe. Rose x
Very true and well said Sharlou. Itās tricky as family and friends are great and helpful, but sometimes start to worry about us and want us to be ok and positive. But who can do this realistically facing this horrid treatment ? And would it be even good and something to aspire -aim for?
I am with you - all feelings are valid and ok and we can let them out when we feel safe to do so. For me this is here and with a couple of close friends and some family. But donāt want them to think I am not dtrong anymore - as they think and like me as a tough cookieā¦ enough rambling and this is an old post I know- it just elrang a bell - bell - great thought, letās ring it loud and clear when we got through this ok? Sending love to you - and thanks for sharing your experiences and feelings here. Resonate with mineā¦ xo
Yes sad about cheeseā¦ Boursoin and very strong cheddar still might be worth a try - also like garlic philadelphiaā¦ and apple pie - Sainsburys one is great. And rasberry sparkly drink or berries and cherries cider - without alcoholā¦ probably. Best, was good too. And between us here I went crazy (ppssst) and had a hot chocolate with cream and even a small dash of Baileys - real Baileys!!! when I felt human again end of week 2 of the cycle and watched Favourite weekend TV. That was lovely! Good thinking about little pleasures in the midst of this strange time for us all.
Lemon sherberts were a revelation for chemo mouth - can actually taste the lemon. And yes terribly sad about Spaghetti Bolognaise- cooked some for my son and I ( partner doesnāt like pasta strangely) and my son loved it - while it tasted nearly neutral to me - sad.
But we will get through this and taste everything again - hanging on. Need to sleep now; want to do breakfast for my boy as not sure how first days after 2 nd cycle will be later todqy.Love , Rose
@pod123 the side effects do really seem to vary between people. They changed the anti sickness and increased them but didnāt seem to make any difference.
Keeping everything crossed this reduction in dose and another change in meds works .
My oncologist did say theyāre not too concerned if they need to do a small dose reduction. Hopefully itāll work out well for you @lizk and youāll escape hospital admission next time.
There do seem to be a lot of differences in treatment plans across the country. I think it was @ake above who said you get ondansetron and metoclopramide plus maybe cyclizine? Iāve been given a couple of different ones, plus ondansetron, and my metoclopramide is only for ājust in caseā. Iām also wearing travel sickness bands and I donāt know/care if itās a placebo effect.
I also get the red flushing and someone said it might be the steroids They gave me antihistamines for this second cycle and I think it wasnāt as bad. I only took them for the first 3 days. I only get steroids on the day of treatment though, whereas it seems a lot of you get them for several days.
The tiredness seems to be taking a bit longer to lift this time. They did say the effects can get worse each cycle. Iām hoping to feel better tomorrow as my husband will be back to work and I have a 6 year old to entertain for the rest of half term week. Not sure I can face carving a pumpkin right now
Ohh @ake , nice to hear from you and glad you are feeling a bit more human. Trying not to let the brain take over too much or think too deeply about thingsā¦Iām an over thinker and if I let myself think about all the things, I am done for. Usually alcohol would take the edge off in such scenarios.
I think I remember you are the same age as me, 40 (?) so interested to read that you are on the zoladex. How have you found it? My oncologist said it was usually started after radiotherapy, that she could put me on it thro treatment but the side effects were significant and Iād have a lot to deal with already; hence I declined. But Iāve had the worlds heaviest period since Thursday (thanks blood thinners) so thinking about trying it. Has it had the desired effect and stopped yours?
Interestingā¦I only get given metoclopramide. Altho perhaps Iāll get given more / different ones when I go onto EC? Who knows, the difference is truly baffling you really would think there was one standard operating procedure they all worked to!
Omg @millyk this brings back memories, I had issues with milk production when my baby had a tongue tie & took domperidone then to help (it did help boost lactation!). Funny how all these drugs have alternative uses! (Clearly the anti sickness for cancer is its proper use)
Iām on EC now so maybe thatās a factor. What theyāve given me seems to work so Iām not complaining but I do feel like Iām rattling for 4 days each time. Thatās so bizarre that some patients get one drug and others get four. @millyk I get one called Aprepitant an hour before and then a lesser dose on days 2 and 3. I see Akynzeo is also called Netupitant so I wonder if itās in the same family as Aprepitant with a similar name. Who knows we just have to trust our oncologists and pharmacists know what theyāre doing.
My doc said akynzeo is Ā£600 per pill but you only take one as it lasts 5 days. Now Iām finished on EC, i get the cheap pills for docetaxel. Rubbish really, as Iāve felt a lot sicker on docetaxel.
I have had two cycles of my chemo out of six and have my first ultrasound tomorrow to check chemo is working. Not going to lie feeling a little anxious about all the what ifs!!
What if itās not worked mainly!!
Not sure anyone can say anything to help and sure lots of you have felt the same. Anyway manifesting for good news (although I donāt think they will tell me tomorrow) xx
3rd round of Abraxane yesterday. I feel like Iām in a bubble today. Could have done without just answering the door to my husbands best mates new (extremely glamorous) partner coming round to pick something up that my husband completely forgot to tell me about
The cold cap yesterday was extremely tough, i ended up having it on a fair bit longer than i needed as my treatment hadnāt arrived when i got there (it gets made up on the day at another hospital and when i arrived it was in a taxi on its way over from Liverpool ) so we did the pre cool cap infusion then I was waiting & waiting for the treatment. I wasnāt offered any gauze or anything and doesnāt sound like I am going to be - can I ask if anyone has used the cold cap with any sort of additional protection for bald bits on your scalp? As I think I am going to go prepared with something myself next time
Sending (if ok) a big gentle hug to all of you and hope it is ok to write here as well. Canāt sleep - blaming the stupid steroidsā¦
and will try some music and holiday draming now maybe. Rose x
- bell - great thought, letās ring it loud and clear when we got through this ok? Sending love to you - and thanks for sharing your experiences and feelings here. Resonate with mineā¦ xo
was good too. And between us here I went crazy (ppssst) and had a hot chocolate with cream and even a small dash of Baileys - real Baileys!!! when I felt human again end of week 2 of the cycle and watched Favourite weekend TV. That was lovely! Good thinking about little pleasures in the midst of this strange time for us all.
And yes terribly sad about Spaghetti Bolognaise- cooked some for my son and I ( partner doesnāt like pasta strangely) and my son loved it - while it tasted nearly neutral to me - sad.
, Rose
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They gave me antihistamines for this second cycle and I think it wasnāt as bad. I only took them for the first 3 days. I only get steroids on the day of treatment though, whereas it seems a lot of you get them for several days.
yesterday. I feel like Iām in a bubble today. Could have done without just answering the door to my husbands best mates new (extremely glamorous) partner coming round to pick something up that my husband completely forgot to tell me about 
) so we did the pre cool cap infusion then I was waiting & waiting for the treatment. I wasnāt offered any gauze or anything and doesnāt sound like I am going to be - can I ask if anyone has used the cold cap with any sort of additional protection for bald bits on your scalp? As I think I am going to go prepared with something myself next time