Hi Sue
It Took about twelve hours, I probably could have squeezed out more moisture but I didn’t want to muck around with it too much first time so I pretty much left it to drip dry.
I think they are pretty resilient ?
Jacq x
Hi Ladies
Best wishes to everyone who had. Chemo this week. I had my second EC yesterday.
I was really nervous after the reaction that I had last time. The Chemo nurse suggested trying a different anti sickness drug as the first one might be the cuprit for the really bad stomach cramps I had. I also tried to reduce my calorie intack the day before (no way I could fast!!) and used a new focused breathing technique. It all helped a bit, still pretty brutal but an improvement.
I was wondering what your EC dosages are? Im have 4 EC followed by 4T. I was reading up on side effects and noticed my dosage looked high. I may be worrying about nothing. I have IDC grade 2, sentinal node affected but others clear. Lumpectomy with level 1&2 node clearance.
i am getting 180mg of Eprirubicin, followed by 1200mg Cyclophosphamide every three weeks.
Sadly despite using the cold cap my hair has nearly all fallen out. I was feeling quite chuffed in the early weeks and then Literally day 19 is started to shed big time. Its nearly all out on, the postive side I guess it will make treatment time a bit shorter.
Really wishing you all a good bank holiday weekend - aghhhh cant believe august is nearly over ?
Hi Multitasker from the June chemo thread.
I think the dosages are related to weight which is why they weight you at clinic, it definitely is for some things but someone may correct me on this. I had 4x Ec (2 weekly) and am now partway through my 12 weekly taxol (just done number4).
Ah, just checked in my book and my EC dosages were the same as yours. I found it fine side effect wise (had none) though I did have a dvt in my chemo arm after the 4th. The filgristim injections did produce aching back and hips for half a day on the middle weekend but apart from the first time that wasn’t too bad. My oncologist gave me cocodamol for that and I only needed to take one dose to sleep. Now I’ve moved on to Taxol, no filgristim so that not happening now.
What anti sickness are you on? I had Emend for 3 days on EC and Ondansetron on days 1 and 2 which worked just fine. I was also given domperidone to take as and when but I still have half of them left from cycle one cos I stopped taking them when I realised I didn’t need them.
Sorry the cold capping hasn’t worked for you. I still have about 80% of my hair left and it’s growing now on Taxol. I have a thin patch right on top where a good old comb over can cover it and that’s definitely seeing regrowth there.
As usual, after a really hot summer were due a grotty August bank holiday I think. Bloody typical !
Thanks Sally, thats reassuring. I dont want to rush off and get my knickers in a twist!
This time I have the same anti sickness and you and they seem to be working fine today so far. I am very flushed but I have seen from other posts that is quite common.
Glad to hear cold capping is working for you. I wanted to give it a try as its at least one thing I can do to help the treatment. I feel that so much is out of my hands and you have to go with the medical experts.
There seem to be alot of us getting used to wigs this week. I suppose one silver lining to rainy BH is less sweaty wig heads. ?
Hi, the being flushed is probably due to the steroids they give you. They can have that effect as well as raising blood sugars levels significantly (as I’m also diabetic I managed to persuade my oncologist to halve mine). Again that changes on Taxol. I now don’t have steroid tablets, just one intravenous steroid infusion on chemo day which affects my sugars much less and is much better.
Hi all,
I’m just coming up for air after day 2 after 2nd chemo proved more exhausting than last time. Nausea and in bed by 6pm. Did a bit of browsing online for how to make picc line covers, but nothing that really helped.
In a moment of inspiration, I suddenly remembered that I had some long leg warmer style socks!
So I cut the toe off of one of them and slid it up my arm?.. I even have the heel of the sock in place on my elbow ?..
I thought that might be helpful; I do think the picc line covers online are expensive, so I am still looking at actual leg warmers online now (remember, that would give you 2 picc line covers as they come in pairs…). Found some for a fiver on amazon prime, so they are coming tomorrow, as are my daughter and fiance… my daughter begged me to get something, as looking at the line when my flimsy hospital bandage comes off regularly, she also feels sick!
Am now finally downstairs and managed a light breakfast after anti sickness dose.
I did request emend from my oncologist, but she refused it, and advised a double dose of what I had last round, as early morning treatment.
I have asked to change oncologist. Too many doubts about being on a conveyor belt, and not allowed to make any suggestions or ask questions and now not allowing emend… as I have said before, I would love to swap places sometimes with an oncologist such as mine (now previous I hope) for even half a day, and I think some of the arrogance about their status might tone down a notch or 500!!.. am I being over- reactive?
thanks for reading… and for the picc ladies, try the leg warmer sock idea if you have any… ??
Georgie xxx
Hi Georgie. Sorry your oncologist continues to be so obstructive. I bought Picc covers from Etsy and there are cheaper ones on eBay too. If you have any old leggings they would make good covers too.
My Docetaxol regime is a bit different from Sally’s. I have to take steroids for three days and also continue the Filgrastim injections. Far fewer anti sickness though, and I haven’t felt sick. Not as tired straight after either. Three days in I am getting a bit of bone ache but I’m on top of that with codeine. Also I have slept much better now the steroids have finished. Hope the info is useful. Kx
Hi Georgie
I’ve also resorted to DIY. I made some tentative attempts at something to cover and protect my portacath. Because
A) It sticks out a lot from my chest and hurts if knocked
B) people grimmace and comment when they see it, which is understandable but sometimes makes me a bit fed up -
Will have a better go when I’m feeling a bit brighter. The skull doesnt look half scary enough! They are padded and I stick them on with boob tape ?
Good luck with changing oncologist, you just want to feel people are on your side. Mine wasnt at all helpful when I explained how ill I felt, thankfully I saw the oncology nurse when getting my bloods tested and immediately she was suggesting chaning the meds. Even walked down to see the pharmasist to see what would be better to swop. I was happy to try ANYTHING
Hi Georgie
2nd lot of chemo is gruelling isn’t it, it certainly doesn’t get any easier
I don’t have a picc line but it sounds like you are very enterprising regarding a cover!
My oncologist has been brilliant so feel for you regarding yours, it’s not that you’d wish this on anyone but a bit of empathy doesn’t go amiss
Take care
Jude x
Hi Millsy
I think its very common to feel emotionally low around halfway through chemo cycle. You’ve just managed to battle through the physical effects and then when you get your breath back your mind goes into overdrive. Be gentle with yourself. You have had soooo much to process mentally and to go through physically.
I hope you can work something out with work, be tenatious. You have started treatment now so you can explain how it effects you and what you can do. They probably want to err on the side of caution.
If you feel you are up to the festival go for it. Its good to enjoy normal things. My hubby lives in Zurich and my oncologist gave his ok to visit him, days 16&17. I was worried and he emphasised taking temps, emergency antibiotics and get to a hospital etc. Probably worried too much, but that is natural. It was fine and it was lovely to do and most importantly took my mind off the Big C.
Hi Lovely Ladies,
I hope you all maaged to enjoy the Bank Holiday weekend!
I was lucky as feeling good a couple of weeks after my first chemo (FEC). I had a meal out with family on Saturday and even had a couple of G&Ts!! :smileyhappy: And I had a lovely day out yesterday walking in the countryside and a pub lunch. All of this with my new wig on; it gave me a bit of a headache but maybe I just need to get used to it?
I was interested in the comments about reducing calories/fasting day before chemo - can anyone tell me more about that?
Thanks foe the PICC line cover advice - great ideas. I ordered a PICC line cover but have found that it slips down my arm.
I will be having my secod chemo (FEC) on Friday so for those of you who have had second session already it’s helpful to read how you are all getting on; in the meantime I will make the most of feeling close to normal for a few more days!
For everyone having chemo this week, good luck! And for everyone else good luck with the SEs!
Stay strong…
Cat x
Hi Cat. There is a good thread on fasting with all the info you need. However, only do it if you feel you can as this is hard enough anyway without suffering unduly! I was able to reduce intake for the first couple of cycles but found I couldn’t keep it up. Re the Picc covers, they do come in different sizes, and they stretch! Just run a line of stitching down the side. Should be fine! Kx
Hello all
Not sure how helpful this will be re the decision to fast or not to fast but here goes…
I’d read about this too on various blogs but nothing that had medical or scientific backing (but I’m not saying that there is nothing out there). I asked my onc about it pre my 1st chemo and there were a couple of docs in the room at the time and they were all quite dismissive of it and one even ventured the opinion it could do harm rather than good. As such I didn’t try it.
What I have been doing however is trying to stay really well hydrated. I’ve been drinking plenty of water - usually I manage somewhere in the region of 4 - 6 pints of water per days plus other drinks - milk / juice / squash and hot drinks - however main intake is definitely water. I’m just on day 6 of round two and from reading comments from others on here I seem to have got away quite lightly so far with the SE. I’ve typically had a bit of nausea on day 1 (on both occasions an early night sorted it) and then a bit of fatigue on the next few subsequent days but this has just consisted of a bit of an afternoon nap but no more than an hour. It probably helps that I’m not working and that there is only myself and oh in the house but I do wonder if my water intake is helping to keep the SE at bay and to what extent. I must admit now the weather has turned cooler it’s not as easy to drink so much water but Im going to try and keep it up just incase it is the thing that’s helping.
I’d be interested in what others think - I’m consistently told that all regimes have slightly different se and different people react differently
on the same regime and that my own experience on round 1 won’t necessarily repeat on subsequent rounds.
Good luck all
Sue xx
Hi Lovely Ladies,
Thanks Sue and Ktk. I’m not sure I could fast but I am trying my best to eat relatively healthily and drink lots of fluids…whilst having some treats of course! When I was suffering with nausea during week 1 everyone was encouraging me to increase my fluid intake even further…it didn’t seem to help at the time but may be it would’ve been worse if I didn’t drink so much!
Thanks Rosie14 for your words of inspiration; lovely that you are all still in touch 4 years later and a great reminder to us all that the light is shining bright at the end of the tunnel :smileyhappy:
Wishing everyone a great next few days…
Cat x
Hi Sue
For my second cycle of chemo I did really up my fluid intake particularly once the sickness & nausea had abated. Not sure whether it has helped or not?
My biggest issue this cycle was once I stopped taking the steroids I had around 4 days where I felt terribly shaky & almost out of it. Today (day 9) is the first day that I have felt relatively normal
Have to admit to feeling a bit sorry for myself a couple of time as well ?
Hope everyone is coping ok
Jude x
Hello Cat and Jude
I think I’m the same as you in that I don’t know if the fluid intake is the thing thats helping or not but I’m not to keen on experimenting to find out so I’m gonna keep on mainlining the water just in case.
Jude - they don’t have me taking steroids (other than the ones on chemo day) so sorry but I can’t comment on the SE you are having coming off them. I can however really sympathise with the feeling sorry for myself comment - I’ve had a few low moments myself over the last few days -and I think this is just part of this **bleep** awful rollercoaster we’re on. I’ve decided not to feel bad or guilty about those moments but I’m just going with it at the moment knowing that in a day or 2 I will have hopefully have turned a corner and I’ll have some good times before the ding ding ding of round 3. Well that’s the plan anyhow…
Nite nite all - hope you all get a good sleep
Sue xx
Hi all,
I’m a new poster, just had my second out of three EC to be followed by three of docetexal. I had to laugh when I saw talk of fasting, I’m so hungry I fancy Curry, Chinese, chocolates anything all the time! I’m going to be the only chemo patient to put on weight. I do feel eating keeps the nausea down in my case. Like others I’m a bit groggy the first couple of days and then I’m buzzing from the steroids and waiting to do the hoovering at 7am so I don’t wake the family. Very tearful too which is not like me. I had a very bad reaction to the injections on day 6, so painful in pelvis and lower back, it felt like birth contractions, luckily was eased by painkillers. Not looking forward to next lot though.
I too am having problems about being allowed to go to work, I work p/t for a charity and there is low risk work I could do but as I’m signed off they won’t let me in. I’m going to ask my GP if she can write a sick not that says I can work if I feel up to it.
It’s been great hearing from you all, I think it really helps to know others are coping in their own way with this nasty disease. Best of luck to you all.
Hi there, i started chemo 2 week’s ago, i did not realise that you could go through so many emotion’s in such a short space of time. The chemo it self was not as bad as i thought it woul be. Day 2 well i am sure that you have all seen the advert you know the ooop’s moment well mine was more like the niagara fall’s moment’ i just lost control of my bladder’ up all night going to the loo. No other sign’s of anything but i phoned the unit anyway, blood’s ect was given intravenous a/b and a course to bring home with me turn’s out it was a water infection. Day 5 thrush. Mood swing’s up’s down’s i just don’t know tear’s for no reason this is not like me at all hence the user name LALALAND because that’s where i think i am. Now day15 my hair has started to fall out ah well i’m sorry to sound such a grump but just felt like a moan. ONWARD’S AND UPWARD’S LOVE AND HUG’S TO ALL
Hi LaLa. Welcome to the club!! Bear with it. You did the right thing contacting the hospital. Let the experts look after you. Decide what you want to do with your hair. You might find it more comfortable to bite the bullet and get it shaved and then you can move onto your wig or scarves or whatever you choose. You should start to feel better now so enjoy the next week until cycle two. Hopefully it won’t be as bad!! Lots of love Kxx
Hi Sue
I agree the more fluid we can take in the better!
With regard to the steroids I don’t seem to get the high or mega energy that other ladies get but I definitely get a reaction when I stop taking them. I might ask if I can almost wean myself off them rather than just stop to see if that helps next time
Hi Val & Lala - welcome to the club that no-one wants to be in! It’s good to hear from you but sorry to hear of your se’s & infection - hope you start to feel better soon
It’s actually quite interesting to realise that whilst we may have similar treatment - I’m having 3 x EC & 3 x T + starting herceptin with the T, due to hormone related other diagnosis & age related, additional treatments can be different.
Sleep well all
Jude x