Good morning Tax Warriors - hope you all had a good weekend and were able to enjoy the sunshine despite the chemotherapy. It’s a reminder that by the summer all the active treatment will be over, and the horrible side effects will be a distant memory.
Mooney - sorry you ended up back in hospital. Moving house is stressful at the best of times, without having to cope with chemotherapy as well. It’s no wonder your hair isn’t growing back yet! I hope you find a new home soon, so that you can settle down and focus on that instead of all this. Seriously though, your hair will probably start growing back sooner than you think. I didn’t think mine would grow back until I saw the first signs during the fifth cycle. One day soon you will look in the mirror and see something like a five o’ clock shadow appearing on your head, which is the start of the re-growth. It will be quite slow at first but should start growing at a normal rate a few weeks after the final cycle.
Egg - I had the same combination too, all delivered IV on the same day like Scotty. The first time takes longer because they give you the ‘loading’ doses (double doses) of Herceptin and Perjeta and they also have to monitor you for reactions. The SEs kick in about the third or fourth day and may last for up to a week. As long as you don’t react in the hospital the first couple of days will be OK so make the most of them. And yes, Scotty, the runny nose is definitely the Herceptin because after 8/18 I’ve still got it! I also think the Perjeta makes the ‘Tax Trots’ worse.
Beedot - glad you were able to have your first Tax at last. Brace yourself for the SEs, but they shouldn’t last.
Slowski - I have never got a straight answer on the radiotherapy, and why they kept changing the number of them. First it was just the standard 15, then it was 20 (5 boosters), finally it was 23 (8 boosters). I have had 20 so far (21 today) and it has been OK. At least I will be finished by Easter.
Constipation (those on FEC and EC) - if there has been no movement for 3 days and you have tried the usual laxatives, go to your BCN or GP for help - and don’t delay with the Easter holiday looming. You may be given Lactulose, which I had (to be honest only glycerine suppositories got things moving, but I think the Lactulose helped). Other September Starters were given something called Movicol which was effective.
The Opposite (‘Tax Trots’) - if it’s really severe (can’t stray too far from the bathroom in case of accident), Immodium or similar, sensitive toilet wipes are also essential kit.
Welcome Hen and hi to all others. I’m one week after T2 and for me it has been much more of a challenge than FEC; although no nausea, it’s the range of SEs I find debilitating. At the moment I have peeling hand, runny nose (maybe Herceptin), buzzy ticking in ears, very bad taste which saps the joy out of eating (although I still give it my best shot) , ridiculously red face despite No 7 green primer, fatigue and sore mouth. However, we are all moving on and look how far we’ve come. I am finding ice lollies help with the sore mouth and have stocked up on quite a range, so let’s hope the sunshine lasts.
I have found Herceptin in thigh ok so far although I was surprised they were not using port. I am not getting Perjeta although not sure why, especially after the Aphinity trials showed it to be effective for primary .
Is anyone else having an acid beginning with ‘Z’ (zoledronic?) as a bone infusion after chemo?
Dear Tax Warriors
Just to add to bone pain discussions, I had a right telling off from my consultant for taking Paracetamol and Brufen! He says it masks signs of infection and hospital staff can’t trust your temperature because of its anti pyretic (temp reducing) properties. Therefore if like you become neutropenic you are more likely to be admitted. Sigh! He prescribed me oromorph and wants me to take the full dose prescribed. If you take paracetamol Brufen on an ad hoc basis I don’t think it matters so much as long as you take your temperature beforehand. If you take a mixture of p and b every four hours your temperature never gets the chance to normalise.
Seems logical to me! xx
Thanks for all your lovely comments about moving house and c××p chemo. Talk about worst time! And I have 15 rads after this ( sounds like thats a moving feast reading the comments on here!)
Mooneyxx
Busy thread! Trying to keep up with all your news.
Mooney welcome back and hang in there. Good luck with house move. A new start could be invigorating.
Paula welcome to our supportive, funny and informative thread. Good to have you on board.
Slowski I’m being given Zometa for bone strengthening - is that the one you mean? I have it infused along with the chemo and will take it in tablet form along with the letrazole for five or ten years.
Scotty like you I have T3 next week. Nearly there.
Egg you WILL get steroid energy! Enjoy it. My memory of T2 steroids is eating porridge at 5.30am before putting on a load of laundry.
Beedot glad you have had T1. Hope the se are kind to you.
Everyone else hope the week is going well for you.
I got one of those letters yesterday (a copy of the one they sent to radiotherapists ) which said my nodes had clear margins but lymphovascular and perineural invasion. I didn’t like that ‘but’ so rang bcc helpline this morning. Those words mean in the blood vessels and nerves. She said not to worry about it but explained they are risk factors. So maybe that explains why I’m getting twenty rads instead of fifteen, I don’t know. Weirdly, it has made me sort of grateful for the chemo. I know its job is to hunt down stray nasties and zap them. Losing my hair is a small price to pay.
Saw the oncologist yesterday and she told me not to expect head hair to grow back on Tax as it doesn’t for everyone. I must be patient.
Hope you’re all having good weeks. I’m ok physically but a bit up and down emotionally.
R x
Hello ladies and welcome Paula.
I’m 9 days post t2 and today is the first day I’ve felt pretty ok! Bone pain not so bad this time. Beware the tax trots though this time. These seem to visit me in the middle of the night and come with really bad tummy pains. Imodium has helped though.
Mine was a well hidden lump deep within calcification. It wasn’t a palpable lump so if it hadn’t been for a cyst on my other boob I’m not sure how long it would have been before it became palpable. I also had a clear early screening mammogram in the last year.
I’m having 20 rads. Onc said the extra week was due to me being under 50 (48). It all seems we are different.
I spent a lovely morning on my allotment planting broccoli, cauliflower, tomatoes and peppers and picked an amazing crop of asparagus! It really lifted my spirits and made me feel there is definately light at the tunnel!
Good luck to those being blasted this week and may the side effects be kind to us all.
Xx
Evening girls ?.
I had Tax 2 last Wednesday and was dreading it because of the excruciating bone pain and weakness I had after Tax 1. But I’m feeling lucky to report that the bone has been nothing in comparison. More of a tingly sensation rather than pain. My mouth is yuk and my hand skin is sore but I’m up and going about which is a pleasant surprise. Im sorry if this disappoints those if you who are suffering on Tax 2 but maybe it can give hope to those yet to have Tax 2.
I’m not getting Radio as I have no actual tumour area to zap. I had a double mastectomy with reconstruction 3 years ago which was misdiagnosed as non-invasive. However the cancer now fills my lymph nodes in my right auxilla, up my neck and possibly deep within my chest too. However those nodes in the chest cannot be biopsied or removed because of their deep location. So Onc can never clarify if they are malignant or not. This is exactly the same with the nodes in my neck! Inoperable and can’t be biopsied to confirm.
Anyway, I’m due for surgery to remove the nodes in the right auxilla in June. I’m wondering about asking for the silicone implants reconstruction to be removed too…because what if the nodes deep in my chest are malignant after all, but I’ll never feel them because there are implants covering them? I’ve had these implants for 3 years now and they are ‘mine’. So if they are removed, it will mentally and emotionally feel like a double mastectomy, all over again.
My mum was diagnosed at the same age as me, 32 years old. But I don’t carry any BRCA genes. It’s just coincidence.
I’d like to hear any opinions about me suggesting they remove the implants whilst doing the node clearance.
Thanks ladies x
Thank you all for the welcome ?
I’m sorry to read I wasn’t the only one with dense tissue causing problems, it looks like it might affect more than the 10% I was told. My onc did tell me though that I’ll continue to have only mammograms as the density goes down with age. I think I’ll check about that nearer the time.
I’ve just spend a while trying to reply to each of you individually but I’m afraid my chemo brain isn’t up to it (not sure that my pre chemo brain would have been either) but I do hope all your side effects are minimal and you get a good nights rest ?
Just a thought Slowski have you tried Difflam for sore mouth. I started difflam day before Tax and apart from Thrush did not get any ulcers or sore mouth problems. Though as you say everything tasted disgusting.
Mrs Broon.This is a recurrence for me nothing in the breast all in the lymph nodes. 6 out 13 nodes affected. You are correct - my onc told me the can’t get the deep ones in the neck chest area as deeply embedded in other tissues.But I am having 15 rads in that chest area to ensure they get everything. Then 10 years of Letrozole plus bone enhancers.Hope that helps.
I am day 2 post Tax 2 legs heavy legs and sreroids kept me awake all last night so feeling cranky this morning.Poor OH! Anyone get irrationally cranky? By the way Esther have my imodium to hand! Happened to me last time and Imodium worked a treat even for the tummy aches!
Worried again about my white cells only 2 yesterday worst they have been I have been neutropaenic twice recently and they diagnosed sepsis this time but caught it really early so 3 days antibiotics.I have a wedding of a dear friend next week and I am desperate to go! When are the worst days for your immunity.? should know but can’t remember for Tax!
Hope all surviving - we do.
Jackie how’s the Bob.Bet Spain is lovely and hot!
Robin erstwhile chemo buddy hope you are coming out the other side.
keep smiling everyone. Am sending love hugs and loads of strength to all of you lovely ladies.
Mooney xx
Thanks, yes have got Difflam this time and mouth much much less sore, but as you say the vile taste is harder to shift. Despite the bad taste I hope everyone gets some enjoyment over the Easter weekend!
Now day 4 of tax 2 and just been reading the thread. So much happens so quickly! I was washed out for the first 3 days, but am coming round and just feeling a bit achy and tired.
Well done beedot for getting the chemo… We are all getting there.
Mooney, take it easy, and fingers crossed you make your friends wedding.
Chemo brain is making this a short post… But just wanted to say hi to everyone and hope every one has a bit of a break over easter without too many problems.
Well I have officially joined the ranks of Tax Warriors! Had T1 today. Yesterday was a LONG day in hospital from 9am until 7pm seeing drs, and then having Herceptin and Perjeta followed by monitoring. Was exhausted! Today seemed much better was there at 9am and put by 1130 so now sitting at home on sofa and relaxing. I didn’t get IV steroids as have had a big dose of oral steroids to start taking yesterday, today and again tomorrow. And this time 7 gcsf injections not 5. Neutrophils were clinging on at 1.3 so they just let me have the chemo!
Mooney I hope you are feeling better and I’m sure your neutrophils will come up once you start the gcsf.
Right now I feel better than I did post EC but I’m not kidding myself that the trots and bone pain won’t arrive in a few days time. I kept ice in my mouth the whole infusion time so will see if that helps with the sore mouth developing or not.
Hope you all manage to have a restful Easter weekend.
Big hugs to all,
Egg x
well you warned me, day 4 yesterday and I felt like I had been run over by a steamroller. Some aches but mostly nervy tingles and no energy. The Tax headed straight for my scar which went very bruised and swollen but is calming down now. Sore mouth, no taste etc.
I hope everyone finds some nice respite over the next few days.
Happy Easter! Hope the quietness of the thread this weekend is due to everyone relaxing and enjoying family time (and chocolate!) and not because you’re all suffering Tax side effects?!
Im day 11 post EC1 and think i have found EC easier than Tax, though it is not without its horrors! I am suffering with hot flushes and am assuming I’m having a chemical menopause…? My ovaries and my cycle were tip top prior to starting treatment so i have been thrown in at the deep end with this! I’m waking every hour in the night with a hot flush, I’m moody and have zero libido…!!! Menopause or just chemotherapy…?
Hello dear friends.
I’ve been quiet simply because I have no energy for anything.
I’m day 9 post Tax 5 and the fatigue is just getting worse.
I can hardly get up the stairs with my little fat leaden legs.
Even my arms ached when I was mashing the dog’s dinners.
Having done my research it seems that I am not abnormal . after all.
I have spent probably 14 hours each day in bed, not that I want to sleep, merely that I’m incapable of doing much else.
I feel about 90!
Mooney - BOB 1 and 2 are healing nicely and we’ve had some lovely spring temps here - 25C yesterday.
And yes - I am very cranky with OH which is so unfair as he’s doing everything.
How on earth have you managed to move house? You must be Superwoman.
I’m also very worried about next week - as this is when Bob usually makes his appearance.
However, despite all my moaning, my spirits are quite high.
I just feel pretty useless at the moment.
But we are all moving forward.
We are all warriors!
Xxxx
Dear All
I’m day 5 of T1. Spent most of yesterday in bed as zero energy and today have woken up with sore mouth and throat. Aching like an 80 year old. Started gcsf jabs which probably haven’t helped with the bone pains. Have 7 this time instead of the usual 5.
Meant to be going on a picnic later today but I don’t think that is going to happen!
Jackie I don’t know how you’ve managed with 5 T cycles - you are superwoman.
Tee hee Egg.
I’ve spent most of it in bed!
Or hospital!
All I can say is just go with it.
Rest, rest and more rest.
Praying you feel better soon and get at least one good week.
Hugs xxx