@flojo that’s very confusing and a poor show if they’ve got your her2 status wrong ! I would be asking questions about this … it’s possible though that maybe your her2 status has only just come back ? If you had a lumpectomy it could be that it’s gone up in the latest pathology x
I am her2 positive and have started herceptin .
@stevie86 Im envious of those if you that have recovered quickly after the Infusion …
it’s taken me nearly three weeks to feel anywhere near normal and I’m still exhausted … I do have long covid , pre existing anaemia and a heart condition though so .no surprises there !
Hi everyone. Hope you’re all doing well. Moving ever forward to ringing that bell I went for my second session of Docetaxel yesterday all geared up to get through it and prepped for the next 3 weeks. I’ve done ok after first session. Had a throat infection week 2 and a week of penicillin cleared that up. My bloods came back up to normal levels. All good to go but I reacted to it at the point of infusion. Had a mild reaction in the first which was sorted with extra steroids and antihistamines into the infusion and a half hour break and was able to carry on. Yesterday more severe reaction and allready on the max amount of pre meds. Although unpleasant at the time hasn’t phased me. Consultant stopped the session and is changing me to weekly Paclitaxel which I am happy to go with as should be more tolerable. Keeping positive thoughts and all set to give it a go. Keep going everyone. Thoughts are with you all. Xx
Hi just read your post. I have had 3 rounds of EC & I am due to start 3 rounds of Docetaxyl on the 27th Dec. I’m absolutely dreading it because I have read about quite a lot of people who get these reactions . How many weekly paclitaxel will you have to have instead? X
Hi @shelbylou81,
Try not to worry. There are more people who don’t react than do. I was aware it could happen my consultant and nurse discussed it during the pre assessment and assured me it would be treated very quickly which it was. I completed the cyclophosphamide so still have to go the 3 week cycle before I can change. I’m back for review on 30th dec and start the pacltaxel on 2nd Jan. not sure how many weeks. All I know at the moment is will be 6 minimum. Hope your next session goes ok. Remember of not there is always a plan b xx
@louisea77 Oh that’s really frustrating , especially when you just want to get those treatments ticked off It seems a sensible decision to swap to paclitaxel x
I emailed the BC nurse who checked my treatment plan and what I was told yesterday was wrong. I’m beginning to lose a bit of faith, as they also got my grade wrong at one time.
Flippin heck that’s not good !! So you aren’t her2 ? Makes me wonder if they mixed your notes up … with someone else’s …
I’m feeling annoyed as I found out today that they couldn’t get accurate readings from heart echo prior to starting treatment so instead used the readings from a heart echo I had six months earlier (not related to my current treatment)
I asked the oncologist if that was ok and he said unless I’d had a heart attack or something he wouldn’t have expected to see my my EF drop during that time … but it’s made me very anxious as at the end of week two I’ve felt quite breathless …
he’s arranging a ct lung scan but couldn’t say when it would be and did ring pharmacy to reduce my chemo dose for tomorrow … they said it was too late as they need to know by mid day the day before … so he said the other option was to delay for a week but I thought that probably wasn’t a good idea although it was tempting .
He did say that he’ll ask to reduce the dose for round three as I also have neuropathy… but he wasn’t too concerned at the moment .
He thinks a lot of my side effects are herceptin related so he’s prescribed pre meds to have before my herceptin and piriton to take home …
not really looking forward to tomorrow as yesterday was the first day I felt remotely normal
I know. I was slightly worried that the oncologist said she would be the one sorting my meds for Friday! But I’m planning to check with the nurses on the ward. I am still HER2 negative.
Your experience sounds a bit pants too. I have found the second round less gruelling than the first, although I have an underlying tiredness that hasn’t gone away this time. Hoping number three doesn’t hit me.
I know what you mean about delaying for a week. They said they might do that at new year and I thought that sounded lovely. But it’s going ahead - it gets it done, I suppose.
Best of luck for tomorrow. I hope it’s better than you expect. Remember those space invaders and it will be another ticked off - closer to getting it over with. xx
@flojo I must admit the last couple of times I’ve seen an oncologist who looks like he should have retired years ago and didn’t even know how to print my consent forms off !
Today he rang the breast nurses to basically ask them how to do his job … (ie a load of questions about how to refer for scans etc ) … Jeepers… last time I got the nurses to show me my medication to make sure he’d prescribed me the right chemo ! He has however prescribed pre meds before tomorrows session but I’m wondering if I should have delayed for a week after all … I know what you mean about underlying tiredness as that’s what I’ve had with round one . I’m just permanently exhausted
Hi! Thank you for all the great info @nikkilc!
Can you elaborate on the nutritional part. Did you eat some protein with every meal? Did you eat mainly animal protein? You mentioned raw garlic and parsley before the infusions. How much did you eat? You bought your Ice cap at Walmart. Did you have someone helping you with the ice cap during the chemo. Nurses are telling me it’s not only painful but very involved. Sorry to bombarde you with so many questions! lol. But we have the same exact diagnosis and I’m willing to learn prepare and put some efforts. I feel that your attitude is close to mine and I admire your way of thinking.
Hi @nikkilc. Do you mind sharing why you refused the tamoxifen. Of course no pressure to share.
I’m 44 also. I have stage 1 grade 3 and I have, estrogen, progesterone and HER-2 receptors positive.
Back from round 3 of EC - another long day and feel totally pooped, but it’s done. Halfway there…I got home to a Little Box of Lifts arranged some weeks ago by the BC nurse. What a fabulous gift. https://www.littlelifts.org.uk/little-lifts-boxes/
Hope you are all doing ok today. I think it will be an early night for me and hopefully some sleep. @arty1 I hope you sorted out your treatment today one way or the other. Take care. xx
Halfway there now hope you manage to get some sleep! I’m just over a week ahead of you. Just struggling with some back ache from the filgrastim injections . Keep getting those treatments ticked off & I hope the side effects aren’t to bad for you.
Thanks! I was knocked out last night and for first time had a bit of nausea in the night. Hoping that doesn’t last. I hate the injections. Have a good weekend. Xx
@flojo brilliant ! Half way mark ! I got a little lifts box too and they are wonderful . So many lovely things in there . Glad you got some sleep too x
Well I spent five hours at the chemo unit but did not have chemo … they’ve delayed it I was so breathless and fatigued the nurse practioner re checked my iron as it wasn’t done on weds bloods … and my ferritin was just 4 … so instead I had a bag of iron …
Annoying though that due to the scheduling team being so busy and Christmas etc . I may in fact not get my chemo again until my next scheduled appointment on 3rd Jan which I’m absolutely furious about … I spoke to my friend who is an oncology nurse practioner and she reassured me that they will try and get me in before then and that although frustrating it’s vital my body is recovered enough for the next dose (it’s being reduced too as my neuropathy is bad ) and she said if I’d had yesterdays infusion I probably would have been really ill over Christmas and ended up with a huge delay x
@shelbylou81 I don’t have the injections but for the muscle aches I had with my first cycle I found the heat patches you can get worked a treat . You can either get them from boots or from Amazon.
I went for my second session of Docetaxel yesterday all geared up to get through it and prepped for the next 3 weeks. I’ve done ok after first session. Had a throat infection week 2 and a week of penicillin cleared that up. My bloods came back up to normal levels. All good to go but I reacted to it at the point of infusion. Had a mild reaction in the first which was sorted with extra steroids and antihistamines into the infusion and a half hour break and was able to carry on. Yesterday more severe reaction and allready on the max amount of pre meds. Although unpleasant at the time hasn’t phased me. Consultant stopped the session and is changing me to weekly Paclitaxel which I am happy to go with as should be more tolerable. Keeping positive thoughts and all set to give it a go. Keep going everyone. Thoughts are with you all. Xx
. How many weekly paclitaxel will you have to have instead? X
It seems a sensible decision to swap to paclitaxel x
hope you manage to get some sleep! I’m just over a week ahead of you. Just struggling with some back ache from the filgrastim injections 
& I hope the side effects aren’t to bad for you.
I was so breathless and fatigued the nurse practioner re checked my iron as it wasn’t done on weds bloods … and my ferritin was just 4 … so instead I had a bag of iron …