Just a quick post after scanning your posts. I’ve been feeling very sleepy, weak and lethargic since my second TC chemo on Friday. Also pretty spaced out, can hardly keep my eyes open and I’m still on a reduced does of steriods which finish tomorrow. Still, hope to feel better as the days go on.
Sorry to hear of those of you suffering from Side effects, sure they will improved soon and pleased to read of those whose side effects are now turning a corner.
Oh, and everything is starting to taste like “ovaltine” again, bluergh!!
Hi everyone. Sorry to hear some of you have been through such horrid side effects. Me too…turned a corner this weekend but have my next EC tomorrow with barely a let up due to this fortnightly regime. Had my bloods done today as my liver function has been odd and was half hoping for a few days grace but I’m good to go tomorrow. Dreading it. We all know what to expect now…I actually find it as much mentally as physically challenging. I get so low particularly when the steroids finish. Horrible. Anyway, it is my last EC tomorrow before I switch to Taxol weekly. Worrying about that already!! Sending hugs to you all. Xxxx
Suze, let’s hope you don’t get clobbered next time lol. Let’s hope you are one of the lucky ones within minimal side effects. You had your session same day as me. How’s your hair? Mine started to come out massively yesterday and again this morning. Was quite distressing, so went for a crop. Feels weird.
I’m hoping for a good week now before next week. x
Bookworm, good luck for tomorrow. And yes, I agree that it is as much mentally as physically challenging at times. It sure isn’t easy whatever way you look at it.
Hazel, hopefully you’ll start to feel a bit better now you’ve had the first few days over you. Sleep well everyone. x
Thanks Alex and Hazel. Yes, they tried the steroid tail last time. They said this time they will tail it off even more gradually!Just dreading taxol when it’s every week. Not sure steroid wise how that will be. Even though I’m using the cold cap I’ve lost loads of hair. Delightful bald crown. Dont know whether to cold cap today or not. I would like to hang onto my fringe. This illness takes so much from us doesn’t it. My 9 year old daughter is going for a 2 night sleepover with her friend. Hopefully she will miss the worst… so hard for the kids isnt it. My teenage boys have been great. Not quite the summer holidays they were expecting but they’re making the best of it bless them.
Good luck today Bookworm. It must be so gruelling having only 2 weeks between treatments. I already feel like my next one is almost on top of me and I have another week to go! I had the exact same thought when I was feeling awful this cycle…it is as much a battle of the mind as of the body.
Alex, well done on taking charge and going for the crop. Hopefully the reduced weight on the follicles will slow down the shedding. Unfortunately for me I kept losing even after my first shave and found the little bits more annoying than long strands as they are harder to collect up and get rid of! Found it better when I went for a number 1 on the clippers and hardly notice the stubbley bits coming out.
Hope everyone else is well. This weather is really depressing. So hard to do anything fun with the kids for their holidays when it is pouring with rain practically every day! xx
Good luck today Bookworm. I’ve heard that the weekly taxol can be less hard with the side effects, so hopefully, once you’re over this last ec it might be easy!!
Hazel, I really hope you’re starting to feel better, getting through that fog is tough. And yuk, everything tasting like ovaltine, not nice even at the best of times. For me, the worst taste was water. It was just disgusting, like stagnant pond water. I know I didn’t drink enough because of that so this time I’ve stocked up on fizzy water and elderflower cordial.
ive just come out from two days in hospital as they’ve had to remove the PICC line. Grr, now they’re thinking about putting in a port under the skin on my chest. I’m absolutely gutted as it means more surgery and yet another scar. I’m sterling to feel like Frankenstein’s monster. Still, if it works and I don’t get any more blood clots I’ll be happy. Who would have thought that my biggest difficulty would be actually finding a way of getting the chemotherapy drugs in!
Ive been lucky though with the side effects, apart from one night with awful pains (I think from the Senna tablets!) and one night on day 4 or 5 when I felt dead (!!!), I’ve actually been ok. Fingers crossed number 2 will go smoothly.
And for all of us with children, I’m going to do a reverse rain dance in the hope that the sun will come out and they can have a bit of fun.
Good luck today Bookworm. Pookie sounds like you’ve had a tough time with your picc line. Can you now stop the blood thinning injections? Hazel and Oncewild I hope your both feeling a bit better today. Another cold rainy day here so a day of cooking me thinks xx
Good luck Bookworm and hope you are on the mend Pookie - sleeping in your own bed is so good after a stay in Hotel NHS.
i am cautiously saying I have turned the corner. Had a relapse yesterday en route to orthodontist for my daughter’s long awaited brace removal and thought I might not be able to see it through but luckily managed. Her stunning white teeth, hidden for 2 years, are worth it. Anyhow had a few grim hours then started perking up late evening. Managed a light breakfast so hopefully on the up now. Have lost 6lb in the process (which is a good thing for me) - whoohoo!
Going to to talk to docs about anti-sickness meds as I don’t think the Metoclopramide is doing anything. At least I will feel like I have tried to make EC3 better.
Correction to my post below needed as I have been reading up anti- sickness meds. Metoclopramide’s role appears to be to empty the stomach, thereby hopefully stopping nausea, rather than stopping nausea. That’s probably why it didn’t have the effect I was hoping for. I will explore more with the docs.
Pookie, sorry to hear you ended up in hospital due to problems with your PICC. I’m sure youre glad to be home again. You never know what is in front of you on this journey.
I’m with you on the water tasting like pond water and like you, because of that I found I slowed down on the drinking. I then found Ribena was good for me. Maybe give that a try?
If you have the energy, a reverse rain dance would be great lol. x
I have my second FEC on Friday and I’m hoping I won’t have as much nausea and vomiting this time. My onc has given me Emend to take an hour before and another two for the following two days.
This may sound like I’m being a wimp but the thing that is worrying me most is the dexamethasone infusion. The so called prickly bum sensation lasted a lot longer than just the 30 seconds I was warned about…and it really hurt! I hope that this time , if the meds are given slowly, it won’t be so bad.
Thanks Bellaboo. That has given me hope. I’ll certainly mention it to the nurse. They were in a bit of a rush last time so I had it all done very quickly.
Had to go back to bed again this afternoon as still feeling a bit rough. Not been out the house since chemo on Friday. Still, hopefully will feel a bit better tomorrow.
Pookie - What a shame about your picc line, you poor thing! When are you having your post inserted? You’ve been really unlucky. I’m sure they’ll get the port in no problem at all and you’ll be “up and running again” for your chemo. Yeah, who would have thought we would be so keen to have chemo drugs pumped through our bodies. Good luck.
Oncewild - I have had to ditch the ondansetron as it causes severe constipation with me. I’m getting by on metaclopramide during the day and lorazepam at bedtime. I have been prescribed metaclopramide previous to having Breast cancer for a bad stomach and a phobia of vomiting. You’re absolutely right, it does empty the stomach contents, for me this stops me being sick but it tends to “come out the other end”. It can also make you a bit drowsy. I find it helpful for hearburn too. One of the chemo nurses told me that the steriods are the cause of the heartburn?
I have also had another shedding of hair last night but at least it’s cropped to a number one now, I wish it would just all come out if it’s going too.
No steriod bum for me as I take all my steriods orally (I think?).
Bookworm, Alex, Bella, Taran, Flopsy, Diane, Suze, pheww, had to type that fast to remember and sure I’ve forgotten one or two, Take care of yourself all of you and very Best Wishes.
Thanks for the encouragement guys, saw my lovely surgeon today and he’s reluctant to put in a port and certainly won’t even consider it until the clot resolves. So I’m still left with no idea how they’re going to get the darned stuff into me for my second FEC next thurs!
Hazel, so sorry you’re still feeling rough, hope today was better. And I hope everyone else is coping ok at the moment.
Hugs to you all
Pookie (of the very soon to have no hair variety…it started coming out an hour ago!) xx
hope you are all doing well. I am very pleased to say that I am. Even about to try my first coffee post EC2!
I have been pondering how I can best take care of myself over the next few months and wondered what you are all doing?
I was doing a lot of cycling and walking prior to diagnosis and want to keep these going as much as I can, at least walking the dog every day (excluding the dark days of course). But I feel I ought to do more. Had decided to start Pilates but now can’t face the idea of being with a group of healthy lovelies as a uniboob bald person. So I have been looking into options in the cancer arena - Pilates/Tai Chi/Gentle Zumba run by physios/ Maggie’s Centre/ Macmillan - but I am not sure I am ready to define myself by cancer either. Does this make sense?
Also wondering about eating better. I am still watching my weight and cutting out alcohol (bar the odd glass of prosecco!). We mostly home cook and have plenty of fruit and vege but should I be taking diet more seriously?
My final ponder is about socialising. I have always liked to have things planned and in the diary and find myself itching to do this for my good weeks but also being cautious about being in busy places or planning too far ahead. I guess I need to chill about it and seize the day more - accept a new modus operandi!
Dianabrew, good luck for your 2nd FEC today. My 2nd is on Tuesday. I haven’t had a particularly easy time and it feels wrong to be having to go back to do it all again, but another part of me wants it iver and done with to be able to tick another one off. I’m sure you are the same. Hope the Emend works for you X
Bookworm, how have you been since your session earlier this week? Hope your doing ok.
Hazel, sounds like you’ve had a rough time since last session. Hopefully you are starting to turn a corner, now that the first week is over you.
Is everyone else ok? Forum seems pretty quiet.
I have to have my PICC line replaced before the chemo today. Aaaah!
It refused to give blood on Wednesday and has not been in the right place since it was put in. Let’s hope it all goes without a hitch. I know what you mean about it feeling wrong to have to go through it all again.
Hello to all the other ladies too, my foggy brain won’t retain all your names and individual circumstances the moment I leave the page to write this reply ( must get a pen and paper and write it all down)
I may be on my own today at the chemo unit. My husband is helping my daughter and partner move house. I feel a bit guilty that I haven’t been a help. My granddaughter has been a joy. I lifted her out of the bath the other evening and she told me off! " Nana, you are naughty to lift me! You have a bad arm and a sick booby "
Hi everyone. Hope you’re all managing within reason. I had my 3rd EC on Tuesday. Haven’t been able to get out of bed since. Worst one. But today I’m going to try to sit in the garden and at least celebrate that the last wretched dose is done with. Have cold capped again but hair very thin but Still have fringe! (Of sorts!) The 2 week regime has just not really given me any let up from SEs so really glad that’s done with. Start taxol on 16th August. Worried about allergic reaction but I gather they closely watch you?! Big hugs to you all brave ladies. Onwards and upwards xxxx
I hope you are all coping OK. I shall be thinking of you Alex as we both go for our second FEC on Tuesday - hoping you have an easier time this cycle.
In answer to Oncewild’s post, I’m reading an interesting book called ‘Anti-cancer - a new way of life’ by Dr David Servan-Schreiber, which is very readable and talks about how to nurture the body’s own cancer-fighting cells by creating an ‘anti-cancer’ environment. He has had brain cancer himself, and it was in response to this that he started doing research. Certain foods, for example, can encourage inflammation, and it is in these environments that cancer cells might take hold. It is certainly changing the way I shop for food and other products and is well worth a read.
Regarding exercise, I agree with Oncewild that it’s so important to try and maintain some level of fitness. The classes I attend are peopled by all shapes and sizes, and I don’t feel anybody is looking beyond my baggy teashirt at whether my boobs are perfectly symetrical. A good sports bra and lightweight prosthesis is a good investment. I also had a word with the teachers before the class so that they know I’m in treatment and might have to sit something out. I hasten to add that we’re talking about Pilates and Core Stability classes here, not spin or aerobics! I’m doing slightly less walking than before, but I go with various groups, which makes it more sociable.
Last time I had FEC, I went for a long walk straight afterwards, before the nausea kicked in, and I think it helped. I shall try again on Tuesday, walking back from the hospital, but have hubby waiting by the phone in case I need picking up!