Hi Bibi
Hope you get in Tuesday they changed my meds on my second round to ondansteron cyclizine Dexamethasone emend lansoperazole and Gcsf injection . The ondansteron and cyclizine has made such a difference this time I haven’t been sick at all and only a tiny bit nauseated yesterday and not so lethargic. What anti sickness have you got did they alter them last time .
Hope you not so bad I was like that Sunday worried about the next day x and by the way it’s healthy to Moan especially on here . Good luck xx
Sorry Bibi i meant hope you get on on Thursday x by the way it was FEc I had too x
Hi All
Ooh, a walk by the sea sounds wonderful. We’re off for a long weekend in the caravan at The Lizard just before my next round, so I look forward to getting buffeted by the wind on the sea front there. It is so easy to over do things though. You get carried away with the thrill of feeling vaguely normal, until you realise you’re not quite that strong yet! I’ve signed up to do a Macmillan Mighty Hike around the Wye Valley in August - 26 miles - but can’t seriously start training until this is done. In the meantime I’m doing my usual 1-3 mile walks with the dog.
Hope Thursday appointments go well - Bibi next’s round and Moijan’s port. And your port next week, Wee Burd. Julie, I’m finding the day after treatment is still one of my ‘great’ days. I felt super energetic last time. But I then stiffen up and crash a bit on the day after that.
Re: GCSF/filgrastim injections, I hadn’t realised lots of people have to have daily ones. 8 years ago and this time, I’ve been given Neulasta (last time) and Lonquex (this time) which are both just one injection. Last time I was only given them after my bloods didn’t come back in time, but this time they’ve given them to me from the very start.
Has anyone else had any lower back/kidney pain? I had quite a bit of that yesterday, so am sticking to drinking just water with lemon to try and help it along. I’m now on Day 8 of this cycle so think it is the bit when everything starts breaking down a little bit, before it comes back again. I also get a few extra facial spots and more diarrhea at this point in the cycle.
Hi flora
I had back ache on cylce 1 ofFEC I wasn’t given gcsf injections and even though I was neutropenic they wouldn’t give me for my cycle 2 on Monday but I was sent home with 3 days worth but not had any back ache as yet . Fingers crossed x
I also had terrible spots mainly on back and face but they did go eventually felt like a teenager x
You’re so lucky to go away I have a 12 and 16 year old girls so it’s been really hard to go anywhere and a husband who works every other weekend . Have a fab time and you are amazing doing the wye valley hike x
Chrissy68
Thanks everyone for your support - it does help. Feeling a bit less tired after my quiet day but not 100% ?
Went to have my bloods done - massive queue for car park - managed to get in and out before hubby had got into car park !?? Saved using one of the parking allowances - how does parking work for you all?. We had to buy a pass for £10 - but it gives 20 visits which obviously saves loads of money - especially as each chemo week has 3 appointments.
Anti sickness meds for me are - Emend for 3 days, something on chemo day as a little sheet that melts in mouth plus some steroids, Ondosterone and Dexamethaseone on days 2-4 , Domperidone ( wish it was Dom Perignon) I can take anytime 3 times a day.
Injections for 7 days- try ibuprofen and antihistamine with Loratadine in them and Epsom salts baths for the aching bones.
Have a good evening xx
Hi Bibi
Glad you coping its hard isn’t it ?
Well I’m glad you just mentioned car parking.
I emailed my local MP yesterday to date I have spent. £75 , a month ago I paid another £20 and got a pass for the month so that helped but been told now can’t have another pass unless you attend 3 times a week . The private car parks are generating £25 k aweek for the car park charges and no money goes back to hospital. I will be going on half pay in June and it really concerns me as I’ve been told I’m not entitled to anything and I am the bread winner in our house hold so it’s difficult I would try to work but can’t as I work in the community with children so definite no no x
Anyway end of Moan but I feel strongly about hospital charges
Take care everyone x
Hi all
Just thought I would just added to the parking issues we all seem to have. I have to say since my treatment started I have not incurred any charges. My hospital, Kettering in Northants, gives free parking if I am having treatment which also includes having my PICC line cleaned. I just have to give the car registration number. Can honestly say it’s been great as the charges were starting to add up prior to treatment. I am very thankful.
Love n hugs to you all.
T
X
<Empty imported post>
Hi cuddles just wanted to ask what you wanted to know about implant op. I’m triple neg and had a right mast reconstruction and implant 2 weeks after diagnosis . It was ok and I feel like I was pretty good by week 5 but I also had node biopsy and have cancer in nodes so now need radio after this horrible chemo. The surgeon was so surprised it had spread so there’s a risk of capsuation when I have radio. So it depends what other treatments are needed.I presume you’ve had chemo first before surgery??
I am on day 4 of 2nd cycle and feel like a zombie and miserable it’s so horrible isn’t it , making me feel quite low and I’m not normally like this xx
Good luck everyone xx big hugs xx
Hi Cuddles
I’ve had a back flap with implant reconstruction on my right side and it went really well. The back scar line is under the bra strap, and the front has two scar lines. But I’m not showing my boob to anyone except my husband, who doesn’t care, so I didn’t get a nipple made. The op took 2 or 3 hours - it was quicker than expected anyway - and then I had to come back regularly for top ups to the implant as it was filled and stretched over time. Apart from having to drive to Swansea a lot (where the plastic surgery is done around here), it was quite straightforward. I had my recon done about 3 years after my mastectomy though. I couldn’t have it all done at the time as we thought I was pregnant and they didn’t want want me in surgery for too long. (Turns out I wasn’t - I had an ‘anembryonic pregnancy’ where the egg hadn’t quite worked but the body had reacted as if it had).
I find the worst thing about surgery is sickness afterwards, and carrying drains with you. I had them for a good week after my mx. But in the grand scheme, that’s not long. As long as you do your exercises to stretch it all out, it all comes good in the end.
Afternoon all - Day 3 of round 3 - feeling quite good but taking it steady not doing much, only things that can be done on sofa, reading, knitting and making frequent requests of hubby for drinks and food.
Jude hope you are OK -must be hard managing without your hubby - must be good to have him back this weekend.
Flora thanks for that info re surgery. I have to have mastectomy after this chemo - trying not to think about it at the moment - not so much the surgery but how I will feel after it ? . Reconstruction won’t be till next year but glad to have some info it.
Have a good weekend everyone x
Hi all
So my wigs have arrived and I get to choose one on Tuesday. Still not sure I am a wig person but i will see what happens. I have been walking around eau natural and trying to embrace my skin head. Unless it’s blinking freezing like today when I wear a woolly hat outside and even a scarf inside to keep my bonce warm. On Friday I went to a massive fund raising quiz night with well over 100 people there and will admit I found it daunting. Not sure whether that was because of the lack of hair or the thought of all them germs !!
So other than a really sore mouth and the usual tiredness I think the extra steriods have worked this time. Haven’t felt like I want to pass out due to being very dizzy. I feel pyhsically better but not necessarily mentally better (been over thinking too much the last few days ?).
Macneech ------ I bought a plastic sleeve from Limbo so I don’t get the PICC wet it works a treat. I think Boots sell something that would work too.
Out of interest does anyone have a PICC line that randomly bleeds ? Mine seems to do that and I wondered why?
Love n hugs to you all
T
XX
Hello everyone
Just wanted to ask a few random questions
Firstly Thankyou moijan re reiki I will Persue a request for it.
So I am now 7 days 2nd Fec I want to ask I have never felt so low in my life this cycle it hit me Thursday and I feel today slightly better but do others feel this aweful . Also my arm where chemo was given is killing me along vein to upper arm and hurts so much to straighten it has woken me. Can’t lie right side due to mast can’t lie left side due to vein ! I don’t know what to do .
Also any ideas on what to drink with a leather tongue and indigestion and things to avoid.
I’m going to try to go to a support through treatment day at Solihull with breast care support physically I don’t think I should go but i so wish to as I feel I need support .
Hope everyone is ok it’s so cold be careful xx
Hi,
First visit to the forum, I started EC on 21st Feb and just had second lot last week. What a difference 3 weeks make, the first was a breeze, no obvious side effects other than being a bit hyper from steroids. This time I am completely floored, no sickness etc just dizzy and weak which I admit is a bit of a pain in the proverbial as I had foolishly made plans. Also hair is now thinning quickly and the monk style bald spot is not a good look in the office so working from home until the wig can be altered to fit (it’s now too big and pouffy).
Hope the next round isn’t worse, although I suppose I’ll be a bit more prepared for it. Hope everyone else is doing well.
Morning all,
Well I am about to start back on the merry go round again. I didn’t get the Hickman line in last week as they couldn’t fit me in. So the plan now is to get it done on Wednesday morning. I have to go to the practice nurse today to have bloods taken from my arm which is looking normal again and all the bruising has gone. Tomorrow I have oncology appointment and hopefully the bloods are still ok. If so I will get round 2 on Wednesday after the line has gone in. I have been feeling frustrated at the delay but otherwise ok.
Chrissy sorry to hear you’re feeling so ill. I found Twinings ginger green tea was good when my tummy felt bad and everything tasted yucky.
Doesn’t sound right that your arm is so sore - maybe phone your chemo ward for advice?
Chrissey. I had vein pain when I had fec, they recommended keeping it warm and plenty of fluids, try a hot water bottle wrapped in a towel. It doesnt stop the pain totally but did seem to help.
The taste buds thing is a pain, I cant really taste anything at the moment, but find ginger beer, pepsi with ginger and dilute lemon all helps with the crappy feeling in the mouth. I dont normally drink a lot of fizzy drinks but anything to be able to taste something.
MissGreen, I I would check with the nurses if your PICC line is still bleeding, I was told it could happen for a day or 2 but after that it shouldnt, maybe your bandage is pulling on it slightly. Did you not get a prescription for a plastic cover when you got a picc line fitted? I had bought one but then got one on prescription. I was scared to use it at first but now I can hae a bath or a shower with no issues,
Wee Burd, sorry to hear you are having more delays with your picc line, i cant believe how long you are having to wait, fingers crossed you get sorted on Wednesday.
Ive been reading your posts about parking, you are lucky if you get help with parking fees or get them free, my hospital charges everyone as the car parks are run by a private firm. I always end up putting extra on to make sure I dont get a ticket, It costs £1 an hour to park and if you go over by 5 minutes they are there and giving you a ticket,
Hope everyone is doing OK. Keep well
Hello everyone thank you for your posts today.
I don’t know if it’s the sun or day 7 or both but I feel a tiny bit brighter now .
Moijan - I rang the ward was told it’s epirubicin irritating my veins and there’s nothing that can be done about it . Surely if it’s this bad on cycle 2 what will it be like on 6 and how will my poor veins be ?
Macneech- yes I’m taking lansoperazole it helps but still getting a bit of acid but I will try salty foods and
Jujube I’m going to order ginger beer to try . I did try spiced ginger tea but it was so yuk !
Weeburd god hope you get your picc line which cylcle are you on?
I have oncology app on Friday and will moan about my arm again but I’m convinced the trust is not keen on picc lines. obviously there is a risk of infection but my arm is killing me so it’s now another side effect or am I being just a nuisance?
weeburd Thankyou for mentioning the car parking issue is it Scotland where you are as I’m going to inform my MP of all the differences around the country it might not help me but perhaps someone in the future. You never know it might make it to the House of Parliament for discussion!!!
Take care everyone xx so glad the snows finally fingers crossed gone xx
Hi Chrissy I am in Scotland and parking is free at my local hospital. It makes a huge difference to patients and staff. The Scottish government abolished hospital parking charges at the end of 2008 after huge outcry about the costs. There are only 3 hospitals here with charges and that’s because they were locked into long term PFI contracts so couldn’t be changed. It might be worth starting a petition - get 100000 signatures and the Parliament has to debate it. When you think of how many cancer patients there must be across the country paying extortionate prices to park for treatment and then add all the families visiting patients in hospital there must be millions affected. It just seems so unfair when people are coping with life changing illnesses to give them additional costs to worry about.
Evening all ,Hi and Welcome Green Damsel and ElsieR,
seems round 2 of FEC surprised a few of us - I was really low after it upto about day 10 and wasn’t expecting it as first one had gone so well. On day 5 of round 3 now, not as bad as last time, have monitored my fluid intake more closely and this seems to have helped. Did have the most awful mouth taste for the last 2 days but seems to have shifted now thank goodness. I find lemon and ginger tea with a ginger biscuit a good way to start the day. The thing I’m experiencing is a shakiness if I don’t eat regularly- at least that’s what seems to lift it - but I’m having to make sure I eat a small snack every couple of hours or I get the shakiness and lightheadedness.
Trying to keep active but find I haven’t got much stamina - keep trying though - although been a bit cold to venture out last few days.
Hope you get your vein sorted Chrissy - sounds like you could do with a PICC line if it’s giving you that much jip.
Looking forward to a few warmer days and planning some things for the garden.
Take care all xxx
foodforbreastcancer.com/articles/breast-cancer-diet-during-taxol-%28paclitaxel%29-chemotherapy
Hi ladies, seems a lot of you are going to be joining me on Paclitaxel…just wanted to share this site…has really helpful lists of what we shouldn’tt eat on Taxol , eg some things worsen side effects.,… I hope it’s useful. For you just to have a wee look.
i have had turmericand want to restart, but it gave me reflux…so am investigating it.
talk to you soon.
hugs Moijanx