I have a question which I think only people with herceptin to come might be able to answer.....
I'm currently on FEC.
I've been told that the herceptin will start with 1st T cycle.
Ive been looking at herceptin closely (on good sites not Hello magazine articles..... 😬)
There seems to be a theme that from oncologists point of view, nobody gets side effects from Herceptin.
But from patients, there are plenty of side effects, and their oncologist says 'it is from the chemotherapy you're getting S E's'. Or that it's the tamoxifen, etc. But I'm not going to be having any hormone therapy.
I want to ask my oncologist whether I can start my herceptin with the 2nd T cycle rather than the first one (have to have a whole year of herceptin 😩).
On this and other monthly threads, the T part of FEC T can be full of side effects which may be different to FEC, and I want to be able to know what is causing anything that happens. I also don't want T and Herceptin side effects at the same time, both being the first doses..... does that make sense?
Thanks for any thoughts or knowledge of this.
Thanks for the welcome everyone...and I'm definitely making the most of having no side effects so far (insomnia at times now seems to be a side effect - hence sitting at the computer at 4.28am - but that's not a big worry in the grand scheme of things) x
Can I ask if any one of you has a central line fitted & if so what their experiences of this are.
I had mine fitted 2 weeks ago and am already having couple issues with it.
It’s feeling very achy tonight & I have an ache in my shoulder above where the end comes out. It has bled ever so slightly. I’ve checked my temp & it’s ok. Just wondering if this is normal.
thanks in advance for any advise. Jacqui x
Hi Lovely Ladies,
Sue – thank you for your best wishes for my second chemo session (yesterday). Already feeling nauseas despite change to anti sickness regime, last time the nausea started to kick in in a big way on Sunday (tomorrow) so hoping that doesn’t happen again, time will tell…whatever happens I know it’s only temporary!
PrettiestEyes – welcome to the gang! And no cock ups :-). We are all so different when it comes to SEs so make the most of feeling well! I am certainly appreciating the good days more! Agree with your comment about looking at the world through a different lense and appreciating the little things.
Multitasker – I was also advised to avoid probiotics. Aveeno sounds great, I’m also using bio-oil on my scars.
LalLaLand - I was prescribed Omeprazol for indigestion related SEs. The first sign of hair loss for me was a tingling sensation, next day head started to feel sore and strands of hair falling out every time I put my fingers through my hair (I had shoulder length hair) so took decision at that point to shave it of and that take away the soreness for me, so now I have a No.2 with a few bald patches - my other half has a No.1 cut too so I joke that I never thought I would see the day that he had more hair than me!!:-). Got lots of scarves but also getting on well with my wig when I go out.
For everyone feeling below par (physically and/or emotionally), which is probably all of us to some degree (!) stay strong, we can do this! Sending you all virtual hugs.
Look after yourselves…
Due to have my 2nd chemo on tuesday. my hair hurt's does this make sense any tip's welcolm. also acid reflux at night sounding like a right whinger. Have a good weekend ladies enjoy the nice weather. love and hugs xx
Thanks for the heads up about pro-biotics, Lalaland. I will stop the kefir and ask my doctor when I see him in a couple of weeks. Definitely dont want to do the wrong thing. Some of the SEs have been so horrible I grasp any little twig I think might make me feel better and I should remember I do have not medical background.
Hi there Prettiesteyes. Some people dont get many SEs, my brother and SIL were fine through chemo, only getting tired towards the very end. It seems random how it affects different people. They were polar opposites in terms of fitness, health, diet etc. Another one of lifes mysteries! Fingers crossed your hair holds on fo the wedding
Wishing you all a great weekend.
Hello all, I'm new to this forum (and in fact haven't used a forum in years so I'll probably cock things up - sorry),
I was diagnosed with invasive ductal cancer in June, had a lumpectomy just over six weeks ago (two small grade 2, stage 2), plus removal of lymph nodes (cancer in three out of 15) and I had the first of 6 chemo sessions ten days ago.
I'm sorry to read that so many are suffering side effects and my question is, is it normal not to have any negative side effects after the first chemo? I was fully expecting to feel sick, tired and a whole load of other things but I haven't (and of course I feel so grateful to have got one under my belt and to feel so well. I know things will get worse). I know my hair will go (currently I'm hoping it might last one more week, as I have a wedding to go to, and then I plan to chop it off and I have lots of hats and scarves at the ready).
I was able to go out for my first post-op run on Wednesday and I've been working as normal (I have a sedentary job) . If anything, I am feeling a bit hyper happy - looking around the world with fresh eyes and thinking how beautiful the sunshine is, how lucky I am to have such supportive friends and family etc. Again, is this normal???
Looking forward to getting to know some of you along the journey.
Hi just reading about kefir my oncologist told me to stop taking pro biotics as chemo kill's off good bacteria and taking pro bioctics make's the chemo work twice as hard. don't know if this is so just do as i am told. 2nd chemo next tuesday only 4 left. Anyway have a good weekend ladies love and hugs xx
One week on from 2nd EC. I think I feel better and more positive than same time last round. Like Sunflower really looking forward to a more normal week ahead and maybe knowing this is on the horizon helps keep me more positive.
I also find Aveeno really good for dry skin. I also use Palmer cocoa body oil a couple of times a week. It smells a bit of chocolate, so cant face using it the days immediatley after chemo but love it other weeks. Its oil, obviously, so takes a while to sink in but as it has Vitamin E in it, I like to think it helps my boob scars too.
My tummy has been very unpredictable. Crampy sometimes, tho could be period pain, loose sometimes, constipated others. I’ve started drinking Kefir whichseems to help me. There was a telly program a few weeks back talking about gut health. It seemed to make sense to me. I think the chemo kills alot of the healthy gut bacteria and I like to think this helps restore some balance ‘down there’. I was surprised how much I liked the taste and the feeling of it in my stomach.
Lots of hugs to everyone and wishing all a positive day
Hi Lovely Ladies,
Thanks for the top tips for dry skin……….and welcome to LaLa and Val!
I’m having my 2nd of 3 cycles of FEC today so if last time is anything to go by I will brace myself for a crappy week……but safe in the knowledge that it is only temporary and I have better days to look forward to!
Look after yourselves…
just thought i would check in to in to see how everyone is doing.
Im now on day 10, round 2 of FEC (3 x FEC and 3x T). I have to say that whilst the sickness was way better this time around I am afraid i suffered from mega bouts of diarrhoea followed by the last two days of constipation! What is going on with my stomach, I sometimes dread to think what these chemo drugs are actually doing to my body.
Hair on head is almost non existent and skin is getting very dry, apart from that plodding on with it all. Some days better than others.
Looking forward to a week and a bit of feeling reasonable before going through it all again.
I can’t believe though that at my next session I will be half way through....Yeah!
Well half way through chemo - still have radiotherapy, hormone therapy and bone strengthening injections to get through!
Best wishes to you all xx
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 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
Wishing everyone a great next few days...
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!! 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!
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.
Morning ladies I’m on day 10 of first chemo and dare I say have returned to feeling somewhat normal physically sadly not mentally have had a couple of really low days but I know that’s to be expected. I had cold cap and hair still intact currently, skin on my fingers started to peel yesterday so creaming a lot more. My work have said no to working from home sadly and I need to see occupational health, I feel they would just prefer me to go off sick, I have spoken to an advice lime and they were helpful and sent me a good letter template to request reasonable changes to my work, I do a clinical job working with under 5’s which is is not good because of my immunity so will request working in the office doing some admin, going by the first chemo I feel I definitely wouldn’t be able to work first week but Weeks 2&3 feel like I could do some work maybe on reduced hours to try and get some normality in my life, I feel I will go stir crazy being at home🤪 I am hoping to go to a festival next weekend if I feel ok still? Bit anxious but feel it would cheer me up and in England so can easily get to hospital if needed, I have put PICC line off as they wanted to put in ready for 2nd chemo, I know it’s a gamble and really hope my veins hold out but just not ready to have something in my arm restricting me for baths etc. I will probably have it in ready for round 3 of 8. I don’t write on here that often but regularly read the threads and find them so comforting, wishing you all a good bank holiday weekend and hope the side effects are kind to you 🙏🏻
Good morning ladies!
i have just dropped in from the April 14 thread! I have come to offer you the assurance that this treatment will come to an end and although it takes several months for hair to grow back and to begin sleeping for longer it will happen!
I used to get up anytime between 2.30am and 4 am ! One morning at 5 am I was cooking meat and another I was washing the patio down at 6.00am! 🙀It’s the steroids that make you wakeful!
The treatment is harsh but there are thousands of us still alive because we went through it. Continue to support each other each step of the way and together you will make the journey!
5 of our ladies still post regularly and we have just had our 4th annual meet up!😃
Stay strong ladies for those that love you! 🌸
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
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..... 😉😘
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. 😂
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 😬
Hope you are ok and start picking up soon.
I am the same with the 2nd round, feel like have been hit by a brick wall, taking all my energy just to get dressed today.
Hoping for sleep tonight but fully expecting the 2-3am wake up.
good night all !!
we can do this .......