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October 2016 starters

Sus12
Member

Re: October 2016 starters

Sorry you are suffering Angie. I hope the se's will settle down and get better soon. Our poor bodies do seem to be getting a bit of a battering 😞
Lots of hugs,
Sue F xx
Angywd
Member

Re: October 2016 starters

Hi everyone

well day 3 since first T chemo.  Was doing fine until last night, then pains in hips, legs and ankles started up and felt like my feet were burning with someone sticking pins in them.  Today they keep flaring up looking like I've scalded them so I've been putting cold flannels and after sun on them which does seem to clear it.  Just don't want the skin to start peeling..  Am trying to stay off the painkillers during the day as I know I am going to struggle sleeping with the leg pain tonight and will need them then.  I'm walking round like I'm about 80.  Don't have the fuzzy head and drunken feeling that I got with the FEC tho.  Vision is blurred and my mouth is so so sore, like I've burnt it badly.  Have difflam but it's not making much difference, cold drinks and food only today...  Have the lovely steroid flushes back too, face is bright red and keep coming over all sweaty. Indigestion is playing up too. Oh the joys! 

Didnt have many issues with the herceptin, it was a long injection into my thigh which just felt like a long bee sting, she did stop at one point as it was getting a bit too much but it was ok when she started again.  Difficult to know if any of the side effects are from that as I had the new chemo the day after!  I did have to stay in hosp for the 6 hours afterwards in case of any reactions tho.  I have a picc line but they'd said they don't give it through pics or cannulas anymore. 

Im off for an ice lolly, must be the only one who's buying them this time of year! 

Hugs 🤗 

Angie

xxx

miss.mc
Member

Re: October 2016 starters

hi everyone,
I have been following your posts daily - it's good to know what's coming up & the variety of possible reactions and side effects (even if it is a bit grim). better to be prepared I feel.
I had my 3rd EC about a week and a half ago. it was delayed a week due to low neutrophils & blood levels & I have had to do a week of g-csf injections like many of you. From about day 6 of injections I have had a rather 'loose' tummy (to put it as nicely as I can). is that a side effect of the jabs? has anyone else had this. I went out for a meal for my sisters birthday & dont know if i ate something bad, caught a bug or am just reacting to meds. I find it's really hard to tell if symptoms are side effects of the treatment or something else to be more concerned about.
Re the nausea & taste changes, mine also seem to last about 10-11 days (so far). I have found lime cordial ok and also a tesco finest Chocolate Tea. of course it doesn't taste anything like chocolate to me - more like vanilla or custard! But it's not unpleasantly sweet/odd like water or normal tea.
Sel84: do they wrap your arm in a heat pad before cannulating (& during chemo)?
Love & hugs to all
At least we can hopen for some nice films on TV over the Christmas period.
Karen xxx
Sel84
Member

Re: October 2016 starters

Hi Angie,
How have you found the herceptin and T?

I am due to have my herceptin on Thursday and T on Friday...not looking forward to it, I think it's the unknown again and I want to be able to enjoy Christmas. I was told that I would need to stay at the hospital for 6 hours after the herceptin in case I have an allergic reaction, did you have to do this? Also, how are they both given, is it through a cannula like the chemo, if so do they leave the cannula in for the T? I have read that you can herceptin as an injection in the thigh.

It seems our oncologist's say different things, mine said that the main side effect with T is that your immune system is lower earlier on in the cycle and that I may feel more tired. Having read the comments on here it seems that there are more aide effects than that but I suppose everyone is different.

I am worried about my appointments this week as I had trouble with my veins last time, it appears my veins don't like needles! As soon as the needle went in, my vein would disappear or they couldn't get the whole needle in! This started to stress me out which of course doesn't help.

But I and some of us are half way or more so the end is in sight.

I hope everyone is feeling a bit better today x
Angywd
Member

Re: October 2016 starters

Hi everyone

Aw Gracie sorry to hear you are not well still, really hope that the anti biotics kick in quickly and you at least have a couple of good days before the next chemo.  I know what you mean about losing the days which should be your 'good days' it sucks!  Last week was my 'good week' and I was in hospital every day with various appts and was really fed up! 

Had my first herceptin Thursday and first T chemo Friday.  Felt fine yesterday but was up most of the night with upset tummy and as per usual steroids stealing all of my sleep.  Today the taste distortion has started again, sore throat, sweating, blurred vision and feeling very weak and tired.  No bone ache as yet but have been taking the Claritin as advised by other ladies on here.  Injections for a week start tmrw and they usually bring on significant back ache anyway.      Just hoping that it will all clear up and I can enjoy a nice Christmas Day....

Sending hugs to everyone, thinking of you all 🤗

Angie

x💞x

Gracie
Member

Re: October 2016 starters

Well I should have persevered in trying yo get a GPS appointment for the cold. Last night, I felt terrible and my temperature went up to over 38, so my husband took me to A&E just before midnight. They were brilliant there, but we were there for three hours. I now have antibiotics, so I'm hoping I feel better before my first T on Wednesday. Ive lost my voice and Ive had 6o how out of a couple of social events today. I'm exhausted and I don't want to be passing the bug on.

 

I'm beyond fed up that the 4 almost normal days I have each cycle are being wiped out this cycle.

 

hope everyone else is managing to enjoy their weekend.

 

gracie

xx

Gracie
Member

Re: October 2016 starters

Hi everyone,

 

Thank you for the support. It looks as if most of us are having similar experiences. Sue F, my experience of EC is very similar to yours. The nausea is relentless, but improves on day 11. It's day 10 today, so I gave my fingers and toes crossed.

 

Angie I hope your first T went well today and that you feel well in the next few days. You should feel well for Christmas Day, even if a bit tired.

 

Livvy, you have had chest infections on each FEC? That sounds utterly miserable. You must feel exhausted. I have a nasty chesty cough at the moment and I'm hoping it sorts itself out before my first T next Wednesday. I tried to get an appointment with the GP but couldn't get through on the telephone. I also tried to speak to my medical team, but it was on answerphone. I then decided it would sort itself out. Thinking perhaps that wasn't the best idea now.

 

Jo and Truey, thanks for letting us know how you are getting on with the T. I hope it continues to be okay for you both. Swampy, those pains sound like the pulsating pains I had on my very first EC due to the injections. I think the key is to build up the pain killers in advance and then keep taking them. The pain is pretty vicious.

 

Angie, your post made me smile. I cannot imagine being 4 times more tired than I am now. I'm going to be virtually comatosed.

 

As for alcohol, well I'm partial to a glass of wine or two, but I think my future wellbeing requires me to pretty much give it up or restrict it to celebrations only. I have tried the odd sip and it tastes pretty vile, which is helpful. To be fair, almost all liquid, including water, tastes decidedly off. I'm surviving main;y on bitter lemon and tonic water. I have bought a bottle of baileys for Christmas though.

 

Wishing you all a good weekend and, for those of us with T infusions next week - all the best.

 

Gracie xx

swampy1901
Member

Re: October 2016 starters

Welcome to Day 4 in the the house!! Round 4 of 6 chemo and 1st T!!

To be honest I hadn't felt too bad until yesterday when I had the first of my seven day course of Filgastrim injections.  On the oncologists advice I had been taking painkillers to pre-empt any possible pain since I had chemo on Tuseday and was fine with that.

This morning, although I feel fluey and achey -  the pain spasms are bizarre! There's no knowing where they are going to come from - even my operation scars have been hurting!! - it's not all the time but I have visions of someone with a voodoo dolly of me poking me with a pin just to remind me just what this is all about. Cat LOL

Thankfully our lovely grand daughter decorated our tree and living room yesterday so now we can begin to feel a little more festive now. Not being at work has really brought it home to me how much I miss all the little preparation bits towards Christmas - I've missed the decorations, fundraisers for charities, silly jumper days and carol concerts - all the traditional bits and pieces and even the Works Christmas Dinner!! Next year will be totally different as all this rubbish will be done and dusted!!

I've had to cancel a night out tonight to celebrate hubbys' birthday yesterday but as a consolation he's going to the chippy instead!! He can always find a bright side or funny view to the rubbishy bits!! 

Hope everyone is feeling okay!

 

Swampy

 

Truey
Member

Re: October 2016 starters

Hi Everyone,

 

I'm a little bit ahead having started on the last day of September. Now at D17 of my first T cycle. I had no nausea at all and only a single episode of diarrhoea. The worst has been the bone pain from the injections and the fatigue. Your oncologist is right about fatigue - I have felt sooooo tired on T. On the FEC, by Day 10 my energy was coming back and I felt normal in the last week. I also drank alcohol in the last week Angie ( and could taste and enjoy it). On T my taste is still wonky and I'm still exhausted! Am dreading another hit next Wednesday when I still feel so low. Only 2 cycles left but at the minute that seems lie a very long road.......

 

At the minute I can't feel enthusiasm for anything and I totally agree with the feeling that I am sucking the joy out of my household. I think I look very drained compared to the FEC cycles and for the first time I feel really unattractive. 

 

Hoping to to go out for dinner with friends tonight, so will have to take it easy today to save energy to get through it.......

 

Good luck to all who, like me, are having chemo next week just before Christmas. 

 

Hugs to all.

 

Sue X

 

Angywd
Member

Re: October 2016 starters

Thank you fairy cake, Livy and Jo for your kind words 🌺  The oncologist did say to expect to feel 4 times as tired as I did on the FEC which seems impossible!  I don't usually get any more than 3 hours sleep and cannot sleep in the day until I reach week 3 then it seems to settle.  And she did also warn about the diahorhea....

Oh joy!  

Has anyone else managed to have any alcohol so far?  I've only had a glass of wine twice since starting chemo and it didn't go down too well....would like to be able to have a tipple over Christmas though!

Hugs to everyone, would be lost without my buddies on here!

Angie

xxx

7oanne
Member

Re: October 2016 starters

Hi everyone,

 

just to to let you know I'm day two of T and the nausea isn't to bad at all (touch wood) .  The only things I have noticed is not being able to sleep presumably down to the steroids and I've gone from constipation on the fec to a very mad dash to the toilet yesterday evening with the opposite.  Will keep you posted so hofully you'll know what to expect but fingers crossed for us all that it will be a smoother ride.

 

Good luck to everyone going through chemo soon and a big hug to those who have had it 

Jo xx

livvy
Member

Re: October 2016 starters

Hi everyone,
Had my first t on Wednesday it was alot quicker then the fec went ok even managed to go shopping afterwards,had no nausea but constipation again then really bad diarrhoea 😐 do feel really tired though finished my steroids yesterday and start my g-csf injections today so Il see how it goes I usually crashed on day 3 with the fec,I'm hoping I dont get a chest infection with the t ive had one every time on the fec so wasn't getting any good days really before i was having my next one.
I can relate to the chemo brain! Its a nightmare I can be mid conservation and my mind just goes blank! And we all have a right to feel miserable and sorry for ourselves sometimes, with what were going through and we all know what its really like so we have a mutual understanding of this crap journey! Good luck with those who are starting T and hope its not going to be as bad as we all fear. Xxx
fairycake2
Member

Re: October 2016 starters

hi Angie, I hope the T today is not as bad as you fear, I'm thinking of you and sending positive thoughts your way (wherever that is). 

All things pass. xx

Angywd
Member

Re: October 2016 starters

Hi everyone

yes to Gracie and Jo's querying about the side effects of the FEC accumulating, i found my 3rd one affected me for much longer, especially the drunk wobbly weak feeling.  I too have struggled to get out, and yes it's the fear if embarrassing myself, especially as my tummy is very unpredictable.....

Was in hosp wedsnesday seeing the oncologist, she hasn't helped allay my fears about starting the T chemo today....won't go into it as we are all different and it may not be so bad for all of us, let's hope so anyway.   Started herceptin yesterday was in hosp all day, wasn't too bad just like a very long bee sting!  Got my dark purple nail varnish on ready to start T chemo today, been up alll night as I'm worried about it and also started the steroids yesterday so don't expect to get any sleep for the next few nights 😰

Thank goodness I started early with the online shopping, it's all wrapped and under the tree.  Just feeling very weepy all the time for no particular reason other than I feel so low and I'm so tired of feeling poorly too.  My oncologist joked 'oh well, it's only chemo for another 9 weeks.  It might be the harshest chemo with the T but we're throwing all we can at you cos we don't like you, haha!!...only joking.'.  It didn't raise a smile from me...,  Think my humour has left the building 😩

Good luck to everyone else having chemo this week or next and hope everyone struggling with the side effects start to feel better very soon.

Big hugs 🤗 

Angie

x💞x

fairycake2
Member

Re: October 2016 starters

Hi Gracie, that must have been horrible for you, there's the fear of embarrassing yourself in public, isn't there. I went to meet some friends for coffee cos the cafe is right next to the car park so I thought I could manage it. I was virtually hanging onto each table as i passed it to get through the room to my friends. Worth it to get out of the house and away from antique road trip though! The nausea passed after about day 5, but this weak feeling seems to go on and on for me. 

I know what people mean about taking the joy out - I am so bored with myself obsessing about my symptoms constantly, it must be awful for my family having to listen to me!

 

nyhow I hope that you start feeling better very soon

Sus12
Member

Re: October 2016 starters

Yes I just realised that I had spelt it wrong my chemo head has been bad today :D. My oncologist mentioned biphosphates in relation to post menopausal women with breast cancer and I read an article by the BBC about it. https://www.google.co.uk/amp/www.bbc.co.uk/news/amp/37432935
Gracie I saw my oncologist again today and he said I would probably not be as nauseous if at all on the T which I start next Thurs. I've had 3 cycles of FEC now with 10 to 11 days of constant nausea each time day and night which has left me totally exhausted with the lack of sleep due to feeling so sick through the night. It's been the worst se for me. We all have our difficult times through this but sometimes better days and it's hard when you feel so low but it will get better and you will get through this. And believe your hubby! Dont worry about feeling the way you do. It's not surprising that any of us feel like that with what we're coping with.
Lots of hugs,
Sue F xx
Gracie
Member

Re: October 2016 starters

Hi Fairycake,

 

If it helps any, I feel terrible too. This is day 9 of my 4th EC and it has been the worst one so far. I made the mistake of going into town to get a few bits today. I wasn't out for very long but I thought I was going to collapse in a heap on the way back to the car. I sat in the car with my head on the steering wheel wheezing to catch my breath. I feel totally wiped out.

 

I'm hoping (please, please, please) that the nausea isn't so bad with the T. However I've been frightening myself by looking at the earlier monthly threads where people have said that things improve on day 15. Not great for me when I get hit again on that day 😞.

 

At the moment, I feel like I'm sucking the joy out of our house. Does anyone else feel like that? Normally, I'm very upbeat and full of life. My lovely husband tells me not to worry, but I feel it's becoming boring for everyone now. And there is still such a long way to go.

 

sorry for the depressing post.

 

Gracie xx

Truey
Member

Re: October 2016 starters

Do you mean bisphosphonates? They are normally prescribed in relation to osteoporosis I think.

 

Sue x

Sus12
Member

Re: October 2016 starters

Has anyone been put on biophosphates?

Sue x
Sus12
Member

Re: October 2016 starters

Try just typing into Google 'best presents for.......children/men/dogs etc etc :D.
It might help start you off!

Sue xx
fairycake2
Member

Re: October 2016 starters

At the PC now, brain blank but something will be found!
Sus12
Member

Re: October 2016 starters

Hi Fairycake,
I had the same wobbly leg feeling for a day or two after each chemo session but it did get better after a couple of days so I hope yours does too. I started with little 5 minute walks and then gradually built up. Then started again the next cycle!
Can you do Christmas presents online? I've done that this year as I just haven't been up to going shopping this year. It has meant my postman has had an awful time lugging rather a lot of boxes to my front door! 😄
Lots of hugs, keep your chin up you're doing well
Sue F xx
fairycake2
Member

Re: October 2016 starters

Hi everybody

a week after my third EC and I'm still feeling terrible, so clearly the effects accumulate as you go on. I'm not in pain or feeling nauseous, but have very wobbly legs, as though they might just give way under me. managed a5 minute walk outside today, but that's the first time I've been out of the house since Sunday - aargh! I assume that's normal?

Very interesting as well as supportive, keeping up with you all and marvelling at how differently we all feel. Not feeling very coherent, sorry. My very best hugs and wishes to all of you at the moment, this is a particularly difficult time of year for us. Although the family are very good at sounding helpful, no cards or presents have been bought yet, so it might be a sparse Christmas! 

 

 

7oanne
Member

Re: October 2016 starters

 

Hi everyone, 

 

sorry Angywd it seems chemo brain is effecting me, on my last post I got confused and got a day ahead of myself so good luck for today and Friday.

 

love to all xJox

 

suebond88
Member

Re: October 2016 starters

Morning everyone,

had a meeting with Oncologist yesterday afternoon. All ok for 4th FEC next Tuesday subject to the regular blood test of course.  She didn't seem at all concerned about my cold (I was worried that she may postpone my FEC), saying that everyone has a cold this time of year and not to worry about it!

thanks Liz  for your comments, my cystitis cleared up, and the meds will be included in my next pack.  It is an se of the C apparently and as I'm prone anyway - it is 'one of those things'.

very interesting to read about the new drugs on offer from OldDawn - my dad (90) found the article in the Telegraph and sent it to me, but I understand that the drug is not suitable for me.  But good to know that they are researching and looking for new drugs and treatments.

i too suffer with Chemo brain - won't drive now as I cannot concentrate for more than about 20mins! Only short trips of 5 miles to the next village to see my parents....I've also wandered round the supermarket thinking 'what have I come here for'!!  Fortunately my husband doesn't mind supermarket shopping.

'The wall', seems to be bit softer/lower today - hopefully it will continue to soften until it's time for the next hit.  So good to have this forum to vent every now and then...

hugs to everyone.

best wishes for the coming season - it will be hard for some of us, but I'm sure we'll all be fine with our family and friends around us.

sueBxxx

swampy1901
Member

Re: October 2016 starters

Hi 7oanne

I was told not to take the Emend but was given Metaclopromide before being given the 'T', Nausea is not meant to be such an issue with "T' but that said I still needed one Ordanestron tablet when I got home because I felt nauseous. But I had felt nauseous when I got up early in the morning but my chemo nurse thought it was more to do with a reaction from the steroids. It has not been an issue for me since then.

 

Swampy

7oanne
Member

Re: October 2016 starters

Hi everyone,

Angywd - hope it all went well for you today and that you didn't have to spend too long in the hospital.  

And hi to OldDawn - thanks for the link although it doesn't applie to me (I'm invasive grade 3 Er+ Pr+ rather large tumour). I know someone who it will help so I will pass on the info.

Are we still supposed to take the Emend an hour before the T, as I'm due my first T tomorrow and it was still included in my med's (prescription goodie bag). I was hoping the nausea wasn't going to be an issues this time either, oh well.

Didn't see the oncologist today as the clinic was soo busy but saw his assistant instead (albeit a very nice young lady) but still couldn't answer most of my questions and wasn't given an appointment for the the next cycle either (got one in five weeks time with the same assistant instead which will be just a week before my last T cycle!)

Thank Goodness for this site as I'm feeling slightly out on a limb at the mo as have had side effects each cycle.

 

Looking forward to the Apprentice final tomorrow and Strictly at the weekend 

Hope everyone's well 💝

Jo xx

OldDawn63
Member

Re: October 2016 starters

HER2 + ladies and gents interested in Perjeta - I have dug out article in Guardian 16/11/16 about it now being NHS approved for primary BC patients, here is a link: https://www.google.co.uk/amp/s/amp.theguardian.com/society/2016/nov/17/breast-cancer-drug-perjeta-ap...? This decision is a 'U turn' as in May they rejected approving it, largely because the cost-benefit analysis didn't stack up due to the high price the manufacturer wanted NHS England to pay (they tried to charge NHS Scotland even more!). It seems as though the NHS will only fund it for use in neo-adjuvant chemotherapy for primary BC alongside Taxotere (Docetaxel) and Herceptin (Trastuzumab) in a relatively small number of cases where the BC is 'aggressive' and it is likely to make a difference to the outcome of the surgery. The example given is where it could make an otherwise inoperable tumour more likely to be operable. It is less clear whether it will be funded in cases such as mine, wher it could make the difference between a lumpectomy and a mastectomy. There is also no evidence it will improve long-term outcomes, such as prevent the BC coming back or increase overall projected survival rates. If you are undergoing neo-adjuvant chemotherapy and have not yet started your T + Herceptin cycles, and think it could make a difference to the type of surgery you have been offered, it is worth enquiring, but otherwise, probably not. Hope this is helpful.

OldDawn63
Member

Re: October 2016 starters

Yes, the chemo brain has definitely got to me today. Going round Sainsbury's this morning couldn't remember half of what I wanted to get (should have made a list!), and struggled to put it away when we got it home.

elisan
Member

Re: October 2016 starters

Hi Sue I too am having 6 FEC. Had my 3rd yesterday (woohoo) half way there.

Now feel like am on the countdown and can't wait to be skipping out of onco unit in 9 weeks.

I can relate to the chemo brain, got lost last week driving home a familiar route, what should have been 45 minutes turned into a 3 hour journey. Ended up in tears. Family now joking that I'm on a curfew after dark 😊 Hope your cold clears up an d cystitis managed and that you manage to have a lovely Christmas. 

To everyone else hope side effects don't stand in the way of a lovely Christmas for you and yours☃️

Hugs to all Liz

livvy
Member

Re: October 2016 starters

Well done old dawn!😊 for getting everyone's name right
Ive tried and failed miserably, so when I say hi everybody I mean everybody I read all your posts and think and sympathise with you all, keep strong everyone we can do this we are doing it albeit not plain sailing for any of us for one reason or another we will get there! Big hugs to you all. Xxx
Angywd
Member

Re: October 2016 starters

Hi everyone 

Think we have all hit a wall of some sort 😨and it's totally understandable.  We've all been going through this for some time now and it's inevitable that it's going to get us down.  I'm finding I have dreadful mood swings, usually down to how tired I am all the time.  Sometimes I am so irritable and I know it's unfair on the people around, I try so hard not to let it show.  This is my good week in the run up to starting the T chemo on Friday and I have hosp appts every day which is getting me down.  I want to be getting Christmassy and I know next week I'm gonna be feeling rubbish too.  Like many of you, the chemo is just the start for me and have a mastectomy and radiotherapy to follow.  I know that I haven't got my head around the mastectomy yet...😰

Olddawn, don't feel guilty, we would all do the same in your position!  I am definitely going to ask my oncologist about it tmrw though.  Had my heart ultrasound today and got the go ahead for th herceptin to start on Thursday.  Apparently it's an injection into the leg muscle for about 5 mins, hoping it's not too painful! 

I as well would be lost without this site, it's helped me so much in so many ways.  Being able to share experiences, ask advice and know that I am not alone in struggling to cope with this journey. 

Love to all

Angie

💞

Angywd
Member

Re: October 2016 starters

Hi everyone 

Think we have all hit a wall of some sort 😨and it's totally understandable.  We've all been going through this for some time now and it's inevitable that it's going to get us down.  I'm finding I have dreadful mood swings, usually down to how tired I am all the time.  Sometimes I am so irritable and I know it's unfair on the people around, I try so hard not to let it show.  This is my good week in the run up to starting the T chemo on Friday and I have hosp appts every day which is getting me down.  I want to be getting Christmassy and I know next week I'm gonna be feeling rubbish too.  

Olddawn, don't feel guilty, we would all do the same in your position!  I am definitely going to ask my oncologist about it tmrw though.  Had my heart ultrasound today and got the go ahead for th herceptin to start on Thursday.  Apparently it's an injection into the leg muscle for about 5 mins, hoping it's not too painful! 

I as well would be lost without this site, it's helped me so much in so many ways.  Being able to share experiences, ask advice and know that I am not alone in struggling to cope with this journey. 

Love to all

Angie

💞

OldDawn63
Member

Re: October 2016 starters

Hi Gracie, Truey, Sue Livvy and 7oanne (got it right in the end, blame chemo brain again!) - sorry you are all feeling rubbish at the moment, I know how you feel (and it's only a matter if time before the effects of my last T infusion hit me!). It must be worse for Gracie having fortnightly infusions instead of three-weekly ones, as this gives no time to recover before the next lot. I agree the psychological effects can be as bad if not worse than the physical ones (athough they are probably in part caused by them), because they say having a positive attitude really helps. But it's difficult to be positive when you feel rotten, and it's probably about now that the longer term issues start to hit you and you start worrying about them into the bargain. If anyone is really in a rut, have you thought about asking for counselling and/ or complementary therapies, which your hospital may have offered you when you were diagnosed? I haven't yet resorted to any of this, but I know it is available if I need it. A friend who is a BC survivor had counselling a while after her mastectomy operations (she didn't have chemo but is on hormone therapy) and though she was sceptical at first, she said it really helped to talk to someone not emotionally involved. I started to wobble during my 3rd FEC cycle after I came out of hospital the second time. It was at this point that I started to consider the future stages of the treatment in earnest, as for me chemotherapy is just the start of what will be a very long journey. When I started reading up about the SEs of T, Herceptin, radiotherapy and hormone therapy, and the long-term prognosis for my grade of cancer, I started to worry and lost a lot of the positivity I'd had up to then. But having survived all three of my planned T, Herceptin and Perjeta infusions with the support and encouragement (and at times, 'tough love') from family and friends and from the nurses at both hospitals, I think I have now just about come to terms with what's next, and what else I will probably have to endure to give me the best possible chance of long-term survival. I also know that it's best not to worry too much about the future or to look too far ahead, but to take things one step at a time - not easy for a town planner used to working on long-term development plans, or when you are cooped up in the house most of the time and the rest of the world is in Christmas mode! Hope this helps you and anyone else on this Thread who is feeling down at the moment. The negative thoughts should eventually pass, but if they don't, you may as well take advantage of any help offered, including counselling. XXX

 

OldDawn63
Member

Re: October 2016 starters

Hi Angie - just back home after final infusion (but I won't start celebrating until the worst of the SEs have come and gone!). Perjeta (Pertumazab) is a relatively new targeted biological treatment for HER 2+ BC that works with Herceptin (Trastuzumab). It was offered by the oncologist if we were willing to go privately, as trials have shown it significantly increases the shrinkage of tumours if it is given with T and Herceptin. Up to now Perjeta has not been commonly used for neo-adjuvant chemotherapy for primary BC, and was not available on the NHS for this when I started (on grounds of cost), but it was announced by NICE last month that it is to be licenced now. I don't know if it is too late for October Starters to take advantage of this, but if anyone on this Thread is about to start T with Herceptin, all you can do is ask. I should come clean that l'm only getting Perjeta (and the Neulasta injections instead of the Filgrastrim) because I am a private patient at a Spire Hospital for my chemotherapy. Having discussed it at length with my husband, we agreed that as I have a Grade 3 invasive cancer, we should throw everything we can at it, including Perjeta (and a large chunk of our savings because we don't have private medical insurance), though it was a difficult decision, because we were advised by BCN that T + Herceptin only is a very effective treatment for HER2+ BC. I am acutely aware that not many people are in a position to choose the private treatment option. I often feel very guilty about the choice we made, because it is so unfair that other people have been denied drugs that could improve their outcome, just because they are not available on the NHS and they can't afford to go privately. I think it is ridiculous that you can't just pay the NHS for the extra drugs, so if you want them you have to have the whole course of treatment privately, including the elements you can get on the NHS. I will be transferring back to the NHS next week for the rest of my BC treatment (can't afford to pay privately for the lot), so the operation and follow-on 3-weekly Herceptin injections will be at Walsall Manor Hospital, and the rads following the operation (if required) will be at New Cross (Wolverhampton), as there is no radiotherapy unit at the Manor. I got the L'Oreal Brow Artist kit from my local Sainsbury's, but it may also be available from other large supermarkets and larger branches of Boots or Superdrug that stock L'Oreal products. Give it a try if you still have some eyebrows but they're getting a bit thin or patchy - we are worth it after all..

 

livvy
Member

Re: October 2016 starters

Hi everyone thanks for your replies,
Well ive taken the risk and took 6 🙈 I feel ok it said on the leaflet you can take upto 20mg daily daily so here's hoping anyhow!
I so feel for everybody that's having issues its a nightmare when you have side effects i can relate to most of them and they are not pleasant ! Especially you truey with the stomach issues its either one or the other and not knowing which its going to be isn't helpful! I'm dreading the T tomorrow a i dont know what to expect surely it can't get any worse! I'm actually sick of myself at the moment lol ,with what's going to happen next! But i love Christmas and i won't allow anything to spoil it.good luck everyone and i hope everything improves for those that are having hard time. We can all do this! Xx
7oanne
Member

Re: October 2016 starters

Hi Vintage.

Thanks for the reply and tip about the waterpik - I'll look into it.

I'm using the Alovera mouth wash from Holland & Barrett at the moment - it seems to be the only one without alcohol and chlorhexadine. Didn't think about salted water so might try it when my mouth wash runs out.

Jo xx

swampy1901
Member

Re: October 2016 starters

Hi all

 

Well number 4 and first T done and dusted. I saw the oncologist before I went off for the chemo and he suggested that I start the painkillers four hourly rather than wait for any pain (if any) to kick in.  

He seemed to think my rubbish nights sleep for the past two nights is down to the steroids so wasn't too concerned about that. But then he didn't see me an hour later sitting having my chemo blubbering like an idiot and wondering what on earth was wrong with me!!

I had woken feeling nauseous and thought that even though it technically wasn't necessary that I would take my last spare Emend tablet but as I was kept waiting for hour and ten minutes for my appointment and I didn't have any water with me - he said not to take it and take metaclopromide instead - great I thought - that's at home!!! But as it happened - i was given it during my chemo as a double dose and I thought the T regime was meant to be easier on the nausea! Still I had a half hour kip when I got home and feel slightly better now.

But I did ask if it was ok to take some Pro-biotic drinks for a few days as my guts feel all over the place and have not been right since I went the complete spectrum of constipation to the trots on the last chemo. He said it couldn't do any harm. So I will try that and see if puts my tummy back into feeling normal. The flatulence, bloatedness and general discomfort and wondering what will happen when I go the loo has been mystifying me for the past week. So I'll try anything to see if it will relieve it -may be once I get walking and exercising a little that will move things in a normal direction for once - I have been a real sofa sloth this week. But I did get out to the Christmas Markets last night with hubby, sister, bro-in-law, daughter, son in law and nephew and we all had a few treats plus a lovely mulled wine last night!! So that was fun - needed it too!!!Cat Very Happy

I hope everyone who is starting on the T regime will keep us up to date with how they feel. Just when you think you have side effects noted and managed - they move the goal posts and start us all off again on something new!!

Hugs!!

 

Vintage
Member

Re: October 2016 starters

Hi 7oanne,
My mouth has always been sensitive to mouthwash and most toothpastes. Since starting chemo I have used an alovera toothpaste from holland and barrett and salted boiled water as a mouth wash. I also found the floss was not clearing some areas at the back of my mouth properly and would cause a mouth flare up to start. My dentist recomended a rechargeable water pick . I have been filling it with the warm salted water. And it has Really made a difference and very quick to use also. You can get them in boots / amazon / or your dentist may sell them.
I have not found anything that's helps much with the dry mouth.

Hope this helps
Love V x
suebond88
Member

Re: October 2016 starters

Hi everyone,

i think I must be one of the few staying on FEC and not going onto T.  Not sure why.  Got my 4th on the 20th, so am expecting to have a fuzzy Christmas.  Although I'm half way through too, I'm also feeling very lethargic, heavy and tired.  Not helping at all, by the fact that I have a cold at the moment too, am taking paracetamol on an as need basis and have  just recovered from another bout of cystitis - seems to occur as an se around day9/10 - mid cycle everytime.  Oncologist is going to give me antibiotics as part of my regular meds now.

seem to be focusing on the negatives at the moment and not the positives.  Sometimes it's hard to do, even though there's a lot of positives to think of too.

hope those starting on T that you find it easier to deal with than you're anticipating.  Try and stay positive everyone - it will soon be Christmas🍾🍾🍾🎅🎅🎅

Sus12
Member

Re: October 2016 starters

Hi Livvy.
I really would give your chemo unit a ring and check as they will give you the best advice.
Hope all goes as well as it can tomorrow.
Mine is next week on the 22nd. Bit apprehensive but the quicker it gets started the quicker it will be finished!
Big hugs,
Sue F xx
7oanne
Member

Re: October 2016 starters

Hi everyone,

 

I can relate Truey, I'm starting the T part of the cycle on Thursday and I'm getting myself into a bit of a state about it. Everyone keeps saying you're half way there but it still feels like a long road ahead. I've had mouth issues on two of the three fec cycles despite flossing and boiling my toothbrush after every clean using diluted mouthwash with cooled boiled water (as recommended by my oncologist). I can't use the recommended corsodyl as I'm allergic to one of the main ingredients (chlorhexadine) which seems to be in a lot of mouthwashes. Despite this I've had oral thrush twice and I've now got a dry mouth. I've heard that the T isn't kind on the mouth so I'm worrying already😐.  I've also been hand washing my hands to the point where my hands are dry. Is anybody else painting their nails a dark colour for the T cycle if so what's the reasoning ?  And should I keep take the prune juice for the constipation (of which I usually start a few days before chemo anyway) or is diarrhoea on the cards ?? It's the unknown again .

 

Don't know what I'm going to do at the weekends now as xfactor and I'm a celebrity have finished and Stictly will be next week!

 

Hope everyone's coping ok Jo xxx. Good Luck this week too Angywd and livvy

livvy
Member

Re: October 2016 starters

Hi all hope everyone's doing ok,
I start my T chemo tomorrow so started taking the steroids this morning,well chemo brain is definitely apparent! Despite reading the box several times I only took 2! It should of been 4! Just wandering if it would be ok to take 6 this afternoon to make up for the missed 2 this morning? I dont want to mess up my chemo tomorrow by being an airhead! Xx
Truey
Member

Re: October 2016 starters

Hi All,

 

Well I'm now on Day 13 of my first T cycle and I have to agree about the psychological low. On paper, I've had less side effects than with the FEC but for some reason feel worse!  It's mainly fatigue and apathy (after I weathered the bone pain from the Filgrastim injections), plus one random nosebleed (have had that on all cycles) and one episode of diarrhoea - but the taste disturbance and lack of motivation to do anything has really got to me this time. I feel I hate the T compared to the FEC but for no good reason....I just don't feel like me..... By Day 10 of FEC usually my energy was returning but this time it is much slower...

 

In case this sounds too depressing for those of you about to have T1, I should add that on the plus side, as yet I've had no mouth issues at all (thank you dentist for suggesting Corsodyl toothpaste), no nail problems (but I guess early days), no problems with my scalp (still wearing my wig 6h each day), no peripheral neuropathy and my skin is still soft; though I am using industrial quantities of moisturisers for every possible location........

 

My next T is on 21st December, so Christmas will be a whirl of injections and bone pain.  Maybe my taste won't have gone completely by the 25th - or is that wishful thinking????

 

Good luck everyone who will be infused just before Christmas. We will get through it and at least this forum is here 24/7 for us to  when we need support. Personally, I could not have got through without it...

 

Sue O XX

Gracie
Member

Re: October 2016 starters

Morning everyone,

 

Thnk you, OldDawn, for all the information and advice. It helps to have some idea of what we can expect. As we all move towards the T bit.

 

Ive had a really bad couple of days. Yesterday was the worst day so far. I was so concerned, I went in to have blood tests done, but they were all fine. It's just a case of being hit hard due to the fortnightly infusions and, apparently, the half way point tends to be the worst time psychologically. Is anyone else finding it hard now? I find the thought of 4 more chemos, and not knowing what the side effects will be, to be overwhelming at the moment.

 

i can barely get myself off the sofa without feeling breathless and exhausted. Also, I have suddenly got aches and pains all over the place. In my muscles, but also around the surgery and portacath areas. There are plenty of things I need to be doing, but I don't have to energy for anything.

 

Gracie xx

Angywd
Member

Re: October 2016 starters

Hi olddawn

what is Perjeta?  I haven't heard of this and I'm seeing my oncologist tmrw so should I be asking about it? Will keep an eye out for the L'Oréal kit, sounds good.  Did you get it on the high street?

Hugs

Angie

💞

OldDawn63
Member

Re: October 2016 starters

Sorry to hear about your bald patch Angie. If you are lucky, you may find it starts growing back a bit on the T, but it can go either way, so you could lose more (I was warned about this). At least you've got a 'head start' having kept most of it using the cold cap (if you'll pardon the pun!). If you don't like wearing the wig, a hairpiece might be an option while waiting for it to grow. My hair seems to be growing back now on my head as well as on my legs, although it is still very sparse and is early days. I never lost it entirely despite not cold capping but it is very thin. I have also kept some of my eyebrows and eyelashes up.to now, and am hopeful they will manage to stick around through the final cycle. I am using L'Oreal Brow Artist to fill the eyebrows out, which works well and is surprisingly easy to apply. It is a kit costing £10.00 which contains wax, powder, an applicator brush and some tweezers. If a ham-fisted person like me can manage it, anyone can. I should also warn people that T chemo is only quicker if you're not having Herceptin on the same day. I understand some hospitals, including yours, give them on different days. But if you're having them in one go, the first time will take ages because they have to monitor you for adverse reaction after each infusion. The first time I had Herceptin, followed by Perjeta, followed by Taxotere all on the same day, so as you can imagine this took all day because of the need for monitoring! The last two cycles I am having the T first, followed by the targeted biological treatments.

Angywd
Member

Re: October 2016 starters

Hi everyone 

Swampy, good luck for tmrw, at least the T chemo is much quicker than the FEC so that's good.  I have my first one on Friday... and start herceptin on Thurs.

Olddawn, thank you so much for the advice.  Think most of us on here are starting the T this week or next with slight trepidation!    I've suffered with a sore mouth in the FEC so maybe this means I won't suffer so much with it on the T.  Like we all say, everyone seems to have varying levels of the most common side effects.

Although I have cold capped for all 3 FEC's yesterday I discovered a large bald patch behind my ear down to the nape of neck on one side only, add to that the fact that my roots are now 3 months old I'm getting to the point where I'm going to have to wear my wig whenever I go out.  I'm quite thin on top as well.  Still have lashes and eyebrows hanging on in there tho'. Let's hope they hang around for Christmas! 

 

Higs to all

Angie

💞

OldDawn63
Member

Re: October 2016 starters

Hi Sel84 and sorry for not responding to your post yesterday (have had problems with internet connection). It's surprising they gave you vitamin tablets without explaining why, though from what you say it looks like you have been given multi-vitamin tablets in case you aren't getting enough from your food.

 

Otherwise you seem to have had the same advice as me, i.e. try to eat a healthy, balanced diet with plenty of fresh fruit and veg. The only other advice I had was to avoid potentially risky foods (e.g. shellfish, unpasteurised dairy foods, 'live' yoghourt) during the middle week of the cycle when you are more vulnerable to infection. Macmillan have also produced guidance on healthy eating and cancer, which you may find useful - here is a link:

http://www.macmillan.org.uk/information-and-support/breast-cancer/coping/maintaining-a-healthy-lifes...

 

Research has also shown there is a link between bowel cancer and eating too much processed meat (e.g. bacon, ham, sausages) and possibly also from eating too much red meat - see:

http://www.nhs.uk/Livewell/Goodfood/Pages/red-meat.aspx

http://scienceblog.cancerresearchuk.org/2015/10/26/processed-meat-and-cancer-what-you-need-to-know/

While I've not seen any evidence of a link with BC, a healthy balanced diet means limiting the amount of these meats if not cutting them out of your diet completely. That doesn't mean you can't eat the rest of your Sunday roast today, as long as you put it in the fridge as soon as it cooled off to prevent any bugs, and as long as you don't have roast pork, beef and lamb too often. Not much danger of too much red meat though, given the cost of joints these days - we usually have a chicken or some other dish with chicken or turkey on a Sunday, but yesterday we had roast beef for the first time in ages, and there's no way we are going to chuck the left overs in the bin!

 

However, eating a balanced diet could be a challenge if you get a sore mouth and throat and if your appetite/ taste changes, which are much more likely to be an issue with T (Docetaxel), than with FEC. In my experience (having had 2 cycles of T), these effects are usually temporary and probably won't last more than a week (unless they develop into something worse such as ulcers or oral thrush), but they will limit what you can eat while you are affected. For example, you may not be able to eat acidic or spicy food if your mouth is sore, you may only be able to eat 'soft' foods for a while if you have trouble swallowing, or you may go off certain foods. That may be the thinking behind the vitamin supplements.

 

Hope this is helpful re: diet, and don't despair if you are affected by the SEs I mentioned. They shouldn't last too long, provided you get some appropriate medication if you get a sore mouth, so it doesn't develop into anything worse. For example, you can make up some saline mouth wash (heat up half a teaspoon of salt in a pint of water) and use Bonjela and cough sweets, or Difflam (available from chemists - correction) to relieve the soreness and prevent ulcers, and take Fluconazole (only available on prescription) to prevent oral thrush.

OldDawn63
Member

Re: October 2016 starters

I'll be with you in spirit Swampy, because it's my last T tomorrow so we will probably be having it at the same time (message edited to break it up by bullet points and paragraphs, I can do this on the PC but not on the so-called 'smart' phone).

 

Hope you've remembered to take your steroids today! I find the best way to make sure I don't forget is to write it on the calendar, and stick a brightly coloured post-it note with 'STEROIDS!' written on it on the bedside table next to the alarm clock.

 

Re: SEs, as this is your first infusion of T they should be monitoring you while you have it to make sure you don't have an adverse reaction (a reaction is rare, so don't worry, it is just a precaution). You're unlikely to have nausea or sickness with T, but the main things to watch out for are:

 

  • Aches and pains in your joints - they may give you Paracetamol in the hospital before the infusion to help control this and may advise you to keep taking them over the next couple of days, but if this isn't enough, go back to your nurse or to your GP and ask for something stronger;
  • Hot flushes - likely to be short-term effect only for the first couple of days, this is apparently caused by the steroids reacting with the T;
  • The 'Tax Trots' - have some Immodium and sensitive moist toilet wipes in stock just incase;
  • Sore mouth and throat and changes to your appetite and taste - not much you can do about the taste changes, but they should give you something for the sore mouth (e.g. Difflam - also available from chemists) to prevent ulcers and oral thrush (e.g. Fluconazole - only available on prescription from the hospital or your GP), otherwise, have some Bonjela in stock just incase, and keep rinsing your mouth with saline (you can make this up yourself, heat half a teaspoon of salt in a pint of water);
  • More fatigue / chemo brain - not much you can do about this either except rest when you must, and try to do gentle exercise when you feel up to it without overdoing it - although it will be hard going at first, if you make the effort to go out for a walk or exercise at home, you will feel better afterwards;
  • Effects on your skin and nails - you may find your skin dries out and/ or becomes more sensitive and that your nails become dry, brittle and discoloured, so if you're not already plastering moisturiser all over your skin and conditioning your nails (using suitable oils or hand and nail creams), I suggest you start now, ideally using products suitable for sensitive skin; and
  • Peripheral neuropathy (effects on the nerves in your fingers and toes) - if you feel pins and needles or numbness in your fingers and toes following the infusion, it is important to tell the nurse, because if nothing is done there is a risk of permanent nerve damage.

 

Don't worry about the long list of SEs because you are unlikely to get all of them. Most of the ones you do get will be temporary (albeit not very pleasant while they last 😣) so you should find they will wear off by the middle of the cycle - meaning that they should not spoil your Christmas! 🎅🎄🎁

 

Hugs to you and others facing their first T before Christmas. Hope this helps, and try not to worry, it is unlikely to be as bad as you fear, and if you prepare as best you can, you will be able to cope.