Hi Leo, well done one out of the way. Try to listen to your body I couldn’t sleep at night so was trying not to nap in day thinking that was the problem whereas if was the steroids. So if you need to sleep do. And I walked my dogs every day, just half an hour, with someone else at a very slow pace but the fresh air helped with the fogginess so if you can go with someone for a gentle walk I really would.
Love the Christmas meet up idea too xx
Hi diddy hope you feeling ok, 10 days on I’m savouring a glass of Prosecco. By next weekend you will be feeling better xx
Hi back.
Don’t feel too bad today… but have had a real duvet day and got the kids looked after all day…which helped.
Just feels like the mother of all hangovers, without the fun!!
On the chemo front I was never really given an option, largely due to a high level of lymph nodes involved…
I have also asked them to leave off with the stats and the rest of it until I get to the end of treatment, I think that is o eating element of control that is helping me get through this next bit…
It must be tough having to make that decision, I would ask lots of questions in that boat too…
I think the hanging around and waiting is worse than when it actually starts… mind you, come back to me in a week or so I may have changed my tune!!.. Will be with you on the prosecco front though!!!
Love and cyber hugs to anyone who needs them…
Btw… I have misbehave d on holiday bookings… just put a deposit on going to Lapland for a few days before Xmas… I can’t wait!!! 2016 needs to have something good at the end of it!!!
Positive thoughts for those who have had 1st treatments for minimsl side effects.
Misty, when I went for results the surgeon said that I was borderline for chemo abd the oncologist wanted to have a “chemo talk”, and I got myself in a right tizzy trying to think of what to do. When I got to the oncologist he was very clear his recommendation was chemo which although not my preffered choice meant i didnt have to make a decision as such,.
Sarah, can’t stand prosecco but very jealous at the thought of a glass of vino, maybe next week☺.
I have just got back from 4 1/2 hrs in A&E as I have had some heaviness in my chest on and off all day and in thd end rang the triage line (again) who said I had to go to A&E to be checked. All well so felt a bit of a fraud but Dr lovely and reiterated that there is a low threshold of concern with chemo patients. Place was like a zoo though!
Hi misty I’m 42 so was given the strongest recommendation for chemo even though only 2 lymph nodes. Stats yes, I was told with chemo and radio 92% chance of no recurrence in 5 years. No one has 100% chance even someone who has never had it so I figured I would take those odds. Chemo improved my odds by 10%. Hope that helps? Welcome to Saturday everyone our boiler has packed in ? Engineer coming Monday as its under warranty and we’ve been having a few issues good job I’m warm with the hot flushes!!! Love Sarah xx
Hi All, well first cycle down and apart from the nausea last night and waking with a sore throat (panic reach for thermometer) spoke to hotline and advised to gargle with salt water ? as temp fine. It’s as described by Leo hangover hell.
Helly: hope your OK, 4 1/2 hours, we’re you seen to quickly, or did you have a long wait?
Diddy: how did the self injecting go?
Misty: I was told all the statistics, of chemo and herceptin on survival rate. But was strongly advised for both.
Look forward to a Christmas meet up X
Hi all, room for a little one??
I have posted on different forums on this site but am new to ‘April 2016 chemo’ (almost joined April 2014 thread by mistake due to chemo brain fog!).
My name is Beccy, I’m 35 and was diagnosed on 23rd March with IDC Triple negative. I have 3 tumours in my right breast, the largest measuring 28mm. I have an enlarged lymph node that although it was tested and came back clear, they are still treating as suspicious as still enlarged on CT scan.
I’m having 6 x FEC-T (the first started on 14/4)
I will then have a Mastectomy
Followed by radiothepary
I am divorced and have a 10 year old daughter but luckliy my lovely mum (aka flo nightingale) has moved in and agreed to stay as long as i need her!
Felt slightly lightly headed after first chemo session. Don’t think I had a proper pre-assessment with the nurse, as when I arrived she asked if I bought gloves with me? my hands were very cold and they had to use a heat pack to open up my veins for the canular. I didn’t get told about the 2litres of fluid to drink either although common sense should have probably prevailed on this point and should have probably avoided the late night mcdonalds (last supper) the night before treatment!
Approximately 5 hours after treatment I felt quite nauseous but was luckily only sick once. Took E-mend (Aprepitant) yesterday morning and this morning which has been a life saver. Have also take the Ondansetron and Metroclopramide which were the other anti-sickness meds but they don’t appear to have as much affect as the E-mend. Concerned now though as they only gave me 2 of these. Apparently you can only have these for 3 days but not sure if this due to the expense or for medical reasons. Hoping the sickness doesn’t return!
Sorry for the long post but thought I’d get it all out in one go!
Best of luck to the rest of you on here. It definitely helps to have others who you can share experiences with.
xxxx
Hi beccy hope hope doing ok. I was given the 2 anti sickness drugs you mention for 5 days not 3, so if you feel it would be beneficial maybe ask why you can’t have them for longer next time. I found the first 5 post chemo days worst, my first was 6 April and by 14th I was feeling pretty good, now feel more or less back to normal, touch wood I hope that continues til the next one. I’ve never heard of e mend is that another drug? Sarah xx
Hi!
Had my fist chemo on Thursday - E and C drugs, with the cold cap and was ok!
Had a mild headache for the Thursday and the Friday from the cold cap but the lemon and ginger tea I was drinking helped I think with staying warm and the head freeze!
I’ve been taking the bag of ant-sickness drugs and steroids that i was given and tonight have to start on the injections into my tummy for my white blood cell to help the bone marrow.
So far have felt bit sick but luckily its passed so the drugs must be working!
I have the drugs into a vein into my hand, my chemo nurse seems to think if you have good enouigh veins this is the best option.
My next chemo is on the 28th as am having to have it every 2 weeks so hope will be ok at next lot also.Have to have 8 sessions - 4 EC and 4 Taxol. Will first see my oncologist again on Monday 25th for results of the MRI scan I had to have and next lot of pre-chemo bloods.
Have a family wedding to go to on the 23rd in London which is day 10 when the nurse said my white blood count will be at the lowest ! Hopefully will be ok.
Best of luck to all starting chemo at the moment…Am counting it all down already!!
Rebecca
x
Welcome Beccy (sorry it’s under these circumstances). I was never told about glove and always have cold hands. Luckily she got a cannula in first try, I am a bit worried as only one arm to use as post mastectomy.
Think like chemo, we are all on a slightly different cocktail. If one isn’t working for you there are many others to choose from.
Glad you have the support of your mum, mine too has practically moved in since my diagnosis.
Rebecca: hope the injections go well and top you up for next chemo.
Zoe x
Thank you for all your replies and kind words of support, it really does help.
It is weird all the differemt combos of chemo drugs there are out there, although i’m assuming they’re all tried and tested for different types of bc.
Becky2 - apologies if you have already mentioned this in your other posts but what type of bc do you have? When do you get the results of your MRI scan? I had a CT scan which showed up low grade sclerosis on my back but they didn’t think this was necessarily related. Probably just something else to worry about after I get through this!
The Emend tablets were the ones they said I could only take for 3 days. I do have other anti-sickness but they don’t seem quite as powerful unfortunately!
Talking of holidays, I was all booked up to go to Disney world, florida at the end of october but will probably need to postpone this. Really annoying as we booked it this time last year and have been saving for ages… dreading the increased insurance premiums for when we do re-book! Fingers crossed I’ll be able to claim back on my travel insurance but don’t know if it will be that straightforward as booked the flights and accomodation separately. Will leave to sort in my better weeks me thinks!
xxx
Beccy: we booked a trip to kos (not quite Disney), my husband spoke to customer service and they refused to refund initially. But he complained and was transferred to an exception circumstances department, we had to send proof of my diagnosis but got out deposit back. Good luck, worth kicking up a stink, don’t ask don’t get X
Bex we’ve just got back from 2 weeks in Disney. Insure and go charged me only £60 extra to cover all breast cancer related events, I was fine and didn’t need anything but worth getting a quote from them. There’s 3 of us, my daughter has non epileptic attack disorder and asthma, my husband is straightforward (!) it was £167 for the 3 of us for 12 days. We worked treatment round it and luckily didn’t need to cancel xx
Morning all.
How is everyone doing this weekend?
The hangover from hell seems to be settling down a little, but I am getting naff all sleep at the moment…Was wondering f it was something to do with the steroids… did anyone else find this? Are there any good drowsy drugs I can be asking for next time round as I don’t fancy turning into a vampire during this drug fuelled period of time!?!
Also…I meant to let you all know (can’t remember if I have done so already) cold cap was a non starter if you have a larger size head… none of them fitted! So if anyone is debating doing t and in the same boat as me then I wouldn’t bother… that made one descision a lot easier!!
It also made for quite an entertaining wig fitting session as it appears they couldn’t handle the head size either,so they have gone back to the shop and will see me again when I m a GI Jane!!!
Well cyber hugs to one and all… my toddler has decided that this week is also a really good week to cut her back molars bless her, so I think sleep is a bit over rated for us all at the moment!
Hi Leo, yep I didn’t sleep at all night one and am still not back to normal, it’s the steroids. The chemo nurse I rang to ask what to do told me to avoid sleeping pills if I can, they upset things further and next time they are going to halve the steroids, they start with a mammoth dose and see how you do. I’m now, 12 days on, getting off to sleep but waking up a few times a night. Maybe a nap with your poor toddler today is in order?! Sarah xx
Hi everyone, Beccy we have the same diagnosis date! Don’t think I’ll forget that day… I have my op to remove lump on 29th April so looking to start chemo end of May I guess? I still feel caught up in a whirlwind that I have no control over, I seem to know less than everyone else about tyoes of cancer and drugs etc… All I know is that mine is Oestrogen negative and that priliminary tests how it hasn’t spread to the lymph nodes… Absolutely terrified to start chemo!
Leo - Have you read much on the cold cap? I’m getting really mixed reviews on it, but I guess if I don’t try I’ll never know! X
Leo: my chemo nurse told me to take my steroids (which are twice a day) 8 and 4 so think the majority has worn off by time bedtime rolls round. Although steroid rage is common, maybe going for a walk late afternoon may help.
My little one is cutting his teeth too, so snotty, clingy and dribbles and restless nights seem a given for all for the next week.
I didn’t go cold cap, just thought if it’s going it’s going, didn’t want to put myself through anymore than absolutely necessary, going to a head scarf workshop at the end of the month help me get to grips with my new fashion accessory.
Hope everyone has a restful weekend as possible X
Morning all, I didn’t notice any real change sleep wise (i hadn’t been sleeping properly for ages beforehand anyway) but my last steroids were taken at lunchtime and I think that does make a difference.
Bex, it was a week before I drove a short journey and to be honest had to really think about it and reversing into a parking space took about 5 zillion attempts! !
Michelle, the biggest fear is the unknown, I’ve had my 1st chemo and was terrified. Whilst the thought of doing it again isn’t thrilling me now i know what to expect and it is doable. Xx
Hi Bex we had a wonderful time I went on all rides unless they had an over head harness which would have pressed too tightly on my scar. I had a WLE in Jan and it’s fine but I didn’t want to risk being in pain. There were only 3 I couldn’t go on so don’t worry too much about that, but you have to work out like you say if it’s too soon. I’m sure under the circumstance Disney would change the booking maybe to next Easter or something? My daughter is 13, there were 6 of us went she’s a roller coaster junkie but had plenty of others willing to go on rides I couldn’t. How old is your daughter? Have a good day xx
Ps I drove after 9 days didn’t feel steady enough until then xx