Rooner - that's such a lovely message, just so perfect and so kind (and of course has made me cry). xx
Oh Agarside - I'm so so sorry to hear that and sending you lots of get well wishes and hugs. I hope it isn't what you suggest. At least you are in the right place to get sorted. Please keep us posted - obviously when you can.
Lots of love
Hi Mooney - I had 3xT first and am now on FEC, whereas it seems most people have FEC first. T is very different for everyone and seems to have more varied side effects than FEC. Have you completed all FEC? And how was that? My first 2 cycles were very different to the last T. As you will get lots of steroids for the first few days, they tend to be ok. So days 4 and 5 were the worst for all T, aches, general grim illness, but then things usually picked up slowly. I would ask for good pain killers. I wasn't sure if the aches were the T or the bone marrow injection but it must have been T as I didn't get the same pains with FEC. With T3 I got very sore feet and didn't bounce back so quickly. With FEC I have had severe nausea but I didn't have any nausea with T. Taste buds disappeared for almost everyone on this forum I think.
It would be easy for me to say don't worry too much - but I was a mess worrying about FEC after T. However, the lovely ladies on here reassured me and I hope we can try to help you too. Jacquie had a particulary rough time, as it seems did your friend, but that doesn't mean that you will. The best advice was from WMJ to take things one day at a time and I keep reminding myself of that advice.
Sorry for that long essay - chemo brain means I ramble a lot! Happy to answer any questions you have. xx
LennyGK - yes that sums up T doesn't it. But at least this time you know what to expect - not that it makes it much easier, just that it doesn't sort of ambush you in the same way. Sending you lots of strength to help you make it to your daughter's first confession. My days 4 and 5 were worst so I hope that you also start to improve on day 6 (tuesday).
Thanks for asking - glad to say the effects of FEC are easing now, but still have the extreme tiredness. Dreading FEC 2 though after last time - but seeing onc tomorrow to ask for the strongest possible drugs. xx
Thanks Evie - feeling okay so far but know it's the calm before the storm! My daughter is making her first confession at school on Tuesday and I'm panicking that I won't make it as last time the Tuesday was my worst day! Fingers crossed!
Hope you are keeping well! xox
Cookiepuss - sorry that T2 has been delayed, but as you say maybe that's good so your hands can recover. WMJ and I have both had ports fitted if you have any questions we can help with. One tip - ask for EMLA cream to numb the port before they use it any time. You put it on about an hour before they want to inject/take bloods and it really helps (I am a big wimp so take anything I can get).
LennyGK - hope you are ok with T2. Sorry I didn't mention you earlier, I know most of this group are a week ahead of me but with chemo brain I can't remember exactly who is when.
Cookiepuss - just logged on as I was away getting T2 today.
I am am so so sorry to hear about your mum. That's such sad news and it's just so unfair on top of what you are going through 💕
You' re in my thoughts xox
Cookiepuss - thinking you especially as I think on top of everything else you have T2 today. How are you?
Fiddlercrab - sorry the taste buds are going. FEC is different but still can't wait for food to taste good again.
Rooner, SALowery and Running Girl - all the best for T2 tomorrow.
Hugs to everyone. xx
Hi Corrina. There's some information about the oncotype-dx test here: https://www.breastcancercare.org.uk/oncotype-dx
That's the one they do to work out whether or not chemo will be a benefit to you in your particular situation.
Ugh, my tastebuds are already departing. That bag of crisps tasted rubbish. My own lips taste weird. Now the challenge is to keep drinking enough weird tasting water...
Corrina, are you talking about "oncotyping"?
I had this, hence why here.
The criteria for it is er+ node negative.
The turmour is sent to US for genetic testing, chemo brain cant remember exactly how many, think 12.
Your tumour is given a "score" on likelyhood of returning and if chemo will make a difference to outcome or life expectancy.
0-18 - no benefit from chemo from current evidences.
19-30 - intermediate - but does come down to oncologist experience and grade of tumour. Generally those with 25+ tend to accept chemo and it is mostly offered.
31+ - major benefit of chemo.
Mine was 29.
HI SALowrey just wandering what genetic test results your waiting for? as I have been told there is a test to see if you would benefit from having chemo or not but i dont know much about it and wander if this might be the test you have had. ??and if so could you please tell me about it thanks as might ask about this when I meet with the oncologist x
Cookiepuss, I'm really sorry to hear the sad news about your mum. You have so much to cope with. Hope you are getting lots of support. Sending love. R x
Great news about the dress Rooner, 5 months is ages to make it that little bit less snug!
T2 and H2 done! Only one more chemo to go. Had to be recannulated half way through as it was starting to hurt, but as the nurse said, recannulation is better than the treatment for extravasation. Just waiting for the side effects now, but by the end of this month, I should be over the worst bits of my last chemo.
The oncologist should be ordering my end-of-chemo scans, so we'll see what that means for surgery, although mastectomy is still the most likely outcome regardless. I think it's the nodes they need to decide on.
Hi Wtp, I have been on E&C and am now on weekly Paclitaxol. I have found it so much easier than E&C, however I was lucky enough to have had very few SE from the E& C but unfortunately I had a severe allergic reaction to the GCSF & or Steroids. Now that I am on weekly P I have been weened off the Steroids and don't have GCSF, which means I no longer have the allergic reaction. What I have found with the weekly dose is because I felt so well I may have overdone things, as this week I have been exhausted. I cannot say I want to sleep or indeed are falling asleep but have very little energy and feel as though I am walking through treacle, my legs feel as though they are made of lead! I am just hoping that my bloods are fine tomorrow in order to have my 4th treatment? Unsure sure if that is of any use. Best of luck. X
Fiddlercrab - hope all goes well with T2 today.
Running Girl - loved your post, you put it perfectly about how great this forum is, and also replying to Rooner's post. I'm sure weight will all settle once we get past this and you are clearly a very active lady so that will help.
Rooner - How could anyone mistake you for a man? We have seen the photo - you don't. Reminded me of when I took my 6 month old daughter with me when I went to the optician. She was dressed in a lilac flowery dress and the optician asked me if she was a boy or girl. Honestly, some people!! Re your wedding dress - do you think trying on the dress with a wig or pretty scarf would help at all? It will be a slightly more challenging appointment today - but I really hope you put on the dress and feel like the gorgeous goddess/princess/lady that you are. Do let us know.
Agarside - when will you have T1 do you think? Glad the Feel Good session was such a hit.
Wtp2016 - sorry I can't help you as I had 3 three weekly Ts - except to say that I had no nausea with T and loads with FEC. All the very best to you for your new weekly doses.
Have a good day everyone. xx
Hope everyone is improving daily.
Today, I made the decision to delay my T1, my RBC has gone from 118 to 119 (down from 137), it is just not high enough for me to potentially take another hit, I am so worn out and taking iron supplements as it is.
I had a lovely afternoon, with the Look Good, Feel Good session. As someone who wears make up, it was a bit boring at times, but with my stubby lashes quite depressing! but have got some lovely freebies and my DD2 got first refusal on the things I didnt want, so we are a happy household tonight!
I met some absolutely wonderfully strong women going through hell and still keeping cheerful I was in awe, I am starting to see an end in sight and getting more motivated to do things, but my body feels 20 years older and I wonder if I will ever be the same again....
much love to all
Ok Rooner - here's my daft story for today, chemo brain defnitely. I fancied a poached egg at lunchtime - got the pan out, put water in etc etc, set the timer, made the toast - timer went off, lifted the lid and I had forgotten to put the egg in the pan...... xx
Oh Snail I'm sorry to hear that. I'm no doctor but I'm sure they would have seen (and later removed) all suspicious lumps when they did the initial ultrasound and MRI. If it has only come since surgery then maybe it's something to do with the surgery (again I am not at all medical)? I totally understand your concerns though, I think we will all worry for ever about finding more lumps/tumours. Can you not get an ultrasound quicker - I thought there is a government rule about any lumps being checked within 2 weeks?
Sending big hugs.
Love, Evie xx