Wow are you really posting as it’s going in?! Astounding! Hope you’re still okay and that the cc was bearable.
Thanks to the power of the wireless network I can use the iTouch at the hospital, passes the time, was there from 10.30 to 5pm. CC was the worst bit. Thanks to Emend just a bit queasy now, see what else the tax/cyclophosphamide will do to me. I had multifocal ILC & DCIS and would have been happy no to have chemo but according to adjuvant online the percentage gain for the 5 yr Point with chemo was significant even with no nodal involvement. How are you doing today? Xx
Hi,
Tina I had the same recation with cyclophosphamide and they can reduce/stop it by using a pump/drip on the slowest setting rather than a hand injected dose, which is erratic and much faster. I had to have piriton too because of that reaction. It used to really hurt so glad when they reduced it with the slower dose and snoozed right through on the piriton. If you are not already doing this, hope it may help you too
Love
Lily x
Thanks Lily, I had both the tax and cyclophosphamide super slow, 3 hours for the tax and 2 hours for the cyclophosphamite. Could not tolerate the epirubicin whilst on fec, it burnt&blistered my vein, I got the hives all over and my throat swelled, not pleasant! The piriton makes me sleepy, too. Glad I am half way now!!
Hi,
Tina I was hoping it might have helped you out but I see they are already trying that. I was told C is nearly always the one that causes the problem in my group of drugs so they always give it last. I was okish on epi but my veins dived south on the first trip to the chemo unit so I had to have an op to have a port put in first. They said it reduces the reaction too as goes into a bigger and faster blood flow so maybe that helped a little.Well done for being half way through and that reaction sounds scarey. One of the ladies who posted had a big reaction to each one and had to give up on chemo as couldn’t tolerate FEc or tax.
Take care
Lily x
Hi Lily, I have a portacath as well, it does make chemo easier. Was also told that if reaction to tax no other chemo option really. Glad in the end no further problems! Thanks again!!
Tina now I know what you’ve been through, I’m even more amazed you were posting during treatment. Sounds like you’ve been more than a little unlucky. Glad you’re past the half way mark though. Psychologically that must be a real boost, though am sure it feels as though you’ve a long way to go. I start on Thursday on the first of 3xFEC/ 3xTax. Feel strangely resigned and wanting to get on with it, but I doubt I’ll feel the same on Thursday morning…! Hope you’re still doing well today though, Tina. And Lily, sounds like you’re out the other side?? If so, that’s brilliant.
Hi,
Julie big hugs for Thursday. Yes I had 7 months of chemo ( 12 visits in all) and 10 months treatment overall before returning to work in Feb 2009. My last rads was on 31 Dec 2008 and recently had bone scan, Ct scan, mammos and full blood tests for my 2 year check and thrilled all ok so far.Mind you they count from the day you have your last operation so I was at one year straight after finishing!If you need a little encouragement can I say that I was terrified of having the first chemo, any needles, operations, everything but you know I just looked at the one next thing I had to do (my tick list in the sky)and tried to ignore the giant picture of everything. I was never sick or even felt close while on chemo and not a single mouth ulcer. It was very similar to being pregnant or travel sick for me and after the first I skipped out the door and it was 3 days before I got any effect. I only ever had about 3 not so good days in each cycle with blurred vision, a lot of acid and digestive trouble but none in bed or hospital. Put on weight as ate tons to protect my stomach lining and lots of eggs and meat for protein to repair cells but neuts were always high and haemoglobin. There is a lot of randomness in the side effects but please don’t be too scared as my imagination was far worse than the real thing. I am just very sorry to hear when people have a tough time as some invariably do. I was strangely proud of myself for getting through each one, fussed like crazy by my family and really glad and reassured to have the poison wizzing round every cell seeking out any possible stray cancer cells
Take care all
Lily x
Hi Juile, the wait for chemo to start was the worst bit really, once you have one under your belt so to speak you can start counting down! The chemo nurses are very good and will help manage your sickness etc. I am pretty pragmatic in my approach and must say that so far I have managed to carry on as normal with the school run etc. Had some bone aches from the tax this weekend but with some painkillers it was ok. Listen to your body, and rest when you need to. Sending you a warm cyber hug for Thursday! Tina
Thanks Lily and Tina. It’s so reassuring to hear sane women saying it’s doable. Having a bit of a downer today, just because it all’s ahead. Lily, that must have been an astounding moment to get the two years all clear. I will aim for that and more then. Am sure I’ll be fine, am pretty down to earth and robust, so even if unlucky with the SE, I’d guess I’ll get through it all somehow. Here’s to the future then! x
Hi ladies,
well the future, thats the point and exactly why you will get through this c…p and we just hope the path is as smooth as possible for you. Most of my buddies thought I had a rough time as some of them sailed through with no probs.I have to say I hate going for results but nothing better when you sail out the door ok and don’t have to think how will I tell the family again.Its strange as one moment you feel you have this huge amount of time and treatment to get through, especially if it goes over to the next year. Once you start chemo you start ticking them off and you will amaze yourself how you cope and how time speeds up again. I think it all goes in slow motion in the early days,as you try to get used to the idea but it catches you out so often.
Lily x
Julie,
the whole reason I posted was to send you a cyber hug for your first one tomorrow. Eat and drink a lot to protect your stomach lining and wash it out asap. Tina hope this one is on its way out now and not too bad
good luck
Lily x
Thank you Lily, it’s so true, after all that waiting in the early days after dx, time is now speeding, I am so happy to be half way, SE’s are managable so far. Once you know what to expect it’s much easier to cope. And if in doubt I look at my boys and I know why I am doing this. It took a while for the mind set to come I must admit! I think mental attitude can really influence the way you feel about the treatment, I usually say to myself “I can” and hope for the best! Big hug Julie! You can do it! xTina
Lily and Tina, you nearly nearly made me cry (again!). So hard all this waiting. Am keeping busy and will eat slowly and steadily then. I’m sure you’re right and once I start it will become clearer/ easier and closer to the end (in a good way that is!). Cyber hugs to you too. You’re both amazing to spend time posting for others. xj
Hi,
Julie can I suggest you keep a brief diary of the effects and what day they come in. This is how you can feel more in control and plan when to have trips out and to know when to have a day on the sofa or ask for help. Also if you get constipated you will know to start a day or two before that doubling fruit, juice or whatever works for you. I used to have epi on Tues and the effects would start Friday evening and be gone when I woke up Monday morning. I was a vegetable on the sofa and had hilarious weekends like when my family were all watching wimbledon and I couldn’t even see the ball on the tv! You have to have a crazy sense of humour at times. On cmf I was only slightly unwell but it hung around for longer as I got the runs on that. Keeping a note helped me to make the most of my many good days in each cycle. Julie hope it goes as well as these things can and we know exactly how you feel and we all went back for the next and the next and the next so it must be doable don’t you think?
I was really upset when I was first told I needed chemo but I hadn’t counted on how great I would feel after the last one - to have done it, got through it and to be able to walk on with no regrets that maybe I should have had more treatment. What happens after that is out of my hands.Right now I would be more scared if I hadn’t had it.
Big hugs to you both and keep chugging along, one step at a time.
Lily x
Just read your post good luck for first chemo xxx
p.s. did Lily tell you it also gave her a wicked sense of humour regarding hair oh and a fettish for meringues and strawberries - however hard laughs still go on especially with those who understand it all, wierd vision, toilet antics, dogs shedding hair… not making light of the situation hard but considering how i had to be dragged into my first chemo i done it and then the next and next, fear of the unknown was so much worse for me so this sight gave me an insight and although dreaded each one knew a bit more what was to come, celebrated at end, but also felt weird as knew i wasnt being blasted anymore - Im also hopefully fine and two 2 years down the line, phew first time ive written that, never thought I would get here and hopefully many more to come. xxx
hi everyone,
have just been catching up on this thread, its one that had passed me by. I was diagnosed with 17mm grade 3 tumour and was node negatve. My tumour was only weakly er positive, and pr and her2 -ve.
I had lumpectomy and now have started chemo regime of 3 fec and 3 tax. My oncologist expalined that tax is usually used for node positive or triple negative tumours. Mine was neither of these but he decided to put me on this regime as i am young (36) and he thought my tumour might behave like a triple negative and so decided on this regime to give me the best chance. It is a harsher regime apparently than 6 fec but doable at my age, and also he said they like to throw everything plus the kitchen sink at women diagnosed young. He also said my tumour is a grey area on best practice and that other oncologists would equally have given the 6 fec and that was also good practice.
Hi,
go Lisa!! You and the other buddies kept my chin off the floor throughout and just wish everyone could have made it through to 2 years too. Really miss them.Good to hear you bouncy though 
Tors very interesting to hear what your onc said and lots of luck as you go through this tough part.
Julie how did it go? Hope your first one went smoothly as vein hunting is probably the most worrying part.
Tina hope the last one is paling into nothing and on your countdown towards the final one
Lily x
Thank you, left with wooly mouth after first tax, being half way is a bit mixed, good three behind me but oh no same again, was on 6 fec, but after allergic reaction to epi changed to tax/cyclophosphamide. Overall, I think managing yourself after active treatment will be a challenge, moving forward to survivorship so to speak, have already decided to say to people when asked that I had bc after chemo finished, to help move on, I don’t want for bc to be my constant companion in my thoughts. Hope everyone will get a chance to enjoy this summer weekend.xxTina
Hi,
Tina that is a good approach to take and helpful to start thinking about it. I found stopping chemo strangely scary as though I had forgotten my car MOT or had no insurance. Quite odd and expect I will be the same when I stop hormone tablets in years to come. I realised I had started telling people about BC as though it was part of me now and had to really think that through and made a decision not announce it to strangers I met. Took me a while to get to that point. My Mum used tot ell everyone when I wa shopping and had to shush her too. Yes half way has its good and bad points but the next one will tip the balance and well done you
Lily x