June 2017 starters

[Daffodil54]

Thanks, Jay68. I will. I am using mouthwash but if something could be given to help throat symptoms.

[Jay68]

Daffodil - don't forget to mention your mouth and throat to the onc when you next go - there is medication they can give which doesn't stop it - but relieves it! Jay from May group

[Lainy]

Thanks girls

T went ok yesterday, I almost didn't have it as I had a high temperature and high blood pressure but it turned out to be a broken thermometer and a bit of white coat syndrome (thank goodness as I've planned my whole life around my chemo dates)

Daffodi - thanks I just need to get through today as we are taking the boys out tonight. I've got my look good feel better session in 2 weeks which I am looking forward to.

The pharmacist at the hospital gave me some medicine to gargle with yesterday to help my mouth and throat as its been unbearable for about 5 days each session so fingers crossed that works.

Velvet I'm glad you are making the most of your good week - I cram everything into that week and end up exhausted but happy to catch up with friends and do stuff with my 3 kids xx 

[Anniej]

Hi Triplemum, popping in from August rads to tell you it's a doddle after chemo! Getting set up, measured and tattooed  takes a bit if time, but after that....easy peasy. Good luck. X 

[Daffodil54]

Tripletmum, please tell me that you haven't been without tastebuds throughout?!

I am really hoping to have a bit of a taste for food before my next treatment. Everything tastes bad. 

Docetaxel is proving challenging... Thrush, fatigue, throat raw. 

Sorry. Trying to stay positive but even water tastes awful.

[Velvet]

Morning ladies

Lainy welcome to the June starters. You're at the same stage as a few of us here all about to start tax. I've also had a lumpectomy with SNB but then I had a full ANC before starting chemo FEC-T x6. Wishing you good luck with your first T today.

Bristol Mum I think we will both be starting our T on Tuesday next week so we will be able to compare SE and hopefully share help.

Daffodil54 I'm so glad you managed to make the Looking Good Feeling Better session yesterday.and hope the pampering helped.  Fingers crossed that the worst of the SE are behind you now.

Tripletmum thanks for catching up and so glad you have finished chemo.  It's good to keep in mind that we are all heading towards the end of this tunnel, even though it does seem a long way off at the moment when some days can feel like a week.

I'm making the most of my 'good week' this week before starting T on Tuesday.  Good luck to all going through treament this week x

[Tripletmum]

Hi ladies, just popping in from holiday. Glad to see you are all progressing well. I am now 4 weeks out post Chemotherapy and my taste buds are returning which is great. My oral thrush wash beyond grim but after double antibiotics that went too. Now still have dry / sticky eyes - any ideas please - and nothing in the way of hair regrowth as yet.

Back to reality next week with first meeting about radiotherapy - the joy never seems to end.

Sending lots of love xxx

[Daffodil54]

Welcome Lainy. Good luck with your first T. The steroids make the first few days good.

I am also triple negative but didn't have the genetics as due to being post menopausal, it probably isn't genetic. Our tumours respond well to the chemotherapy apparently and mine has certainly shrunk considerably. I am only having my mastectomy and node clearance post chemo.

I did get to Look good, Feel better and really enjoyed the pampering. 

Have a good day ladies. 

[Daffodil54]

Thanks, Anniej, I am taking Manuka but it is 10+. I just can't stand the taste of anything right now. I feel like food but can't tolerate it when I taste it. I hope this passes as it is very frustrating. I am on day 9 post T and from other postings, it should improve in a few days. I did have a good night's sleep last night though, which is a bonus. 

[Lainy]

Hi girls I'm laying awake (from steroids) and came across this forum and am hoping you will have me?

I've had 3 cycles of EC which were like being run over by a steam roller and now I am dreading my first tax tomorrow (also keeping me awake)

I have had a lumpectomy and CNB and they found deposits in 1 so after chemo I'm having a full auxillery clearance followed by radiotherapy

I am triple negative so awaiting the results of a genetics test to see if I have the BRCA gene. It all seems like a really long slog

[Anniej]

Daffodil, have you tried Manuka honey 15+ or above for the sore throat ? I've taken a teaspoon every day since I started treatment and have been lucky enough to miss out on ulcers , oral thrush and sore throats! Still taking it even though I'm on rads. Helps with gut health too. Holland & Barratt have offers on at moment. X

[Bristol Mum]

Hi
I hope you managed to make it to your look good feel better sessions, I went to one in June and it was fab - you'll love it.
Im trying to make the most of this week before starting T on Tuesdayx

[Daffodil54]

Thanks Velvet. I am still feeling the fatigue and my temperature has been teetering above and below 37.5.

I am waiting for the district nurse to flush my picc line and will make my way to Look good, Feel better. I hope I can keep my energy up and also hope that by the end of the week when my injections finish my throat will start to improve. I seem to be living on jelly and custard.

I hope T is kind to you and that you enjoy Thursday. It is supposed to be lovely.

Have a good, strong day everyone.

[Velvet]

Hi Bristol Mum and welcome to the June starters.

I'm at the same point as you and the same treatment plan - I had my 3rd cycle of FEC two weeks ago and will be starting 3 cycles of T next Tuesday.  

I also have the same apprehension about the T part.  However, I take some strength from the May starters group as they are just ahead of us and are so supportive if you ask them a question - they even pop into the June starters and give advice for some concerns we raise.  If you read their thread they raise most of the side effects and how they are dealing with them.

I never thought that I would post on a forum but have found this one invaluable.  We are all in this together and will go through it together.

Daffodil54 - I hope you are feeling better today and manage to make your LookinGood, Feeling Better session.  Let me know how you get on because I'm really looking forward to mine on Thursday.

Hope today is a good one for everyone x

[Daffodil54]

Welcome Bristol Mum.

It is a difficult journey but it helps to get advice and support on here. Good luck with T. 

[Bristol Mum]

Hello
Late joiner... I started 6 x FEC-T in June, I've done 3 FEC and not suffered too badly, just 3-4 rough days each cycle. I'm now getting nervous about starting T so looking for some buddies to go through it with x

[Jay68]

Daffodil54 - further tips for food - soup, rice pudding, mashed potato with gravy, ice cream with chocolate custard!  They don't particularly taste good but they are the things I rely on for days 4-8 and I've only got one lot of treatment to go this Thursday - hip hip hooray!!! J x

[Daffodil54]

Thanks, Velvet. It is quiet on our forum. I am having a duvet day and have asked for something for the thrush. Hopefully it will help. I just feel washed out today and nothing tastes good. 

I am hoping for an improvement soon!! I have waited a while for the course so intend to get myself there tomorrow.

The fruits pastille ice lollies are good as well as jelly and custard. But nothing tastes as it should. 

Have a good day. 

[Velvet]

Hi Daffodil54

So sorry to hear you are having such a miserable time with SE.  I can see that you've asked the May starters for tips and hope that their advice was able to help.

I'm booked onto a Look good, Feel better session this week, so I hope you will have recovered enough to go on Tuesday because I'm told that it's a really lovey afternoon.

I don't know where all the other June 2017 starters have gone to as it's quite a while since we've heard from many of them but hoping they are all doing well.

Daffodil54 I hope that this new week means that the worst of your SE are behind you and that you start to recover - I'll keep my fingers crossed for you.

Good wishes to all x 

[Daffodil54]

Side effects unpleasant. Throat feels totally raw. Tongue furry and thick and taste buds non existent. Joints very achy. Hope this passes soon.

Sorry to complain but feeling frustrated. 

Hope everyone is coping. I have my Look good, Feel good session on Tuesday. I hope I am up for it. 

[Daffodil54]

Thanks, Velvet. I must say that having no nausea has made the first three days good. We will see what happens after the steroid crash. 

Injections start tomorrow.

Take care everyone.

xx

[Velvet]

Hi Daffodil54

So glad everything went well for you yesterday.  It must be a relief for you to get the first T over with.

I'm on day 9 after my 3rd FEC so had last injection this morning and just starting to feel a bit more 'normal' today.  I know I'll feel better once I know what to expect from T.

I know what you mean about the staff, they all work so hard but they always seem to have as much time as you need.  They are all amazing.

Hope that the rest of your week goes uneventfully for you (uneventfully boring is what I aspire to these days!!!)

Love to all x

[Daffodil54]

Hello ladies

I had my first Docetaxol yesterday. Relief to have avoided nausea. Steroids keeping me awake but so far coping. Expecting the post steroid crash after tomorrow but will go with what my body demands. Had a long wait at chemo suite due to staff shortages. But the poor staff were under a lot of pressure.

Hope the rest of you are well.

Very quiet on here.

Dx

[Daffodil54]

Abulafia and Velvet, we are all in the same boat, so hopefully we will get through Docetaxol just as we got through Fec.

If we listen to our bodies and rest when we need to, we should manage.

Hope all goes well today, Velvet. Tomorrow it's my turn. 

Gentle hugs,

D

[Velvet]

Hi Jay68

Thank you so much for your reply.

No I'm not having any targetted therapies with the Docetaxol.  I've just had my 3rd dose of FEC, so next it's 3 x T, followed by Radiotherapy and then Tamoxifen.

I know none of it is easy, but I think it's just my oncologists's attitude which has made me more fearful of T but your reply was reassuring to read, thank you.  I'll definitely get some Epsom Salts - not something I would have thought of!  

As Abulafia says - it's fear of the unknown really, like starting again.

Abulafia and Daffodil54, I hope that this week goes really well for you both and that your side effects are minimal.  Sending virtual hugs and positive thoughts to all xx

[Abulafia]

Starting docetaxel tomorrow. My onc told me I was on the highest dose and should expect to use morphine. Cheerful.

I did some research and the % are 21 to 25% of women get side effects of one sort or another, but can be controlled. I'll let you know how it goes, but share apprehension. Fear of unknown.

I

[Jay68]

Hi Velvet - don't be frightened, honestly it's not that bad!  The main difference with the two chemos is the first lot is administered by nurse and syringe whereas the Docetaxol is administered by IV drip - and done very slowly to begin with.  

With regard infection, you do obviously have to avoid germs and wash your hands more often - but not any more than with any chemo!  You can suffer from neuropathy in fingers and toes - but my onc said if you do - let them know - the dose can be lowered.  Us ladies from May have found Epsom Bath Salts are brilliant - a lovely soak in a warm bath with a few handfuls works wonders for aches and pains too (a large bucket can be purchased on Amazon for about £10).  

This treatment is no different from the FEC/EC in that you know the side effects which affect you after the first time and you learn how to deal with them - for me treatments 2 and 3 haven't been any worse - it's just you do know what to expect!  

Are you having any targetted therapies with your Docetaxol?  

Good luck to all changing treatments - you'll all be fine! J 

[Velvet]

Hi Jay68  

Thanks for replying.

I'm so frightened of the T part of chemo because my oncologist has made it sound so awful.  He's told me that it's the most dangerous part of chemo and there is a real risk of being admitted due to infection.  He has also stressed the real possibility of permanent neuropathy in fingers and toes as well as ongoing muscle and joint pain.  He's a real optimist!  

As a consequence, I'm so apprehensive about moving into the second part of my treatment.  I've had a few ups and downs with the FEC part, but on the whole my side effects have been controlled eventually.

Anything at all you can say to reassure or advise will be really gratefully received xx

[Jay68]

Hi Ladies - I'm from the May 2017 starters and for any information on the change in treatment to Docetaxel - most of us have had at least 1/2 treatments - personally, I've had 3 -my final one is 24 August!  - I think most of the ladies will agree that this treatment is quiet different to FEC/EC - but my main advice is listen to your body and don't try to go against it!  First 2/3 days you're pumped with steriods and everything is good - but days 4/8 are exhausting - your body will just need to rest/sleep.... but come on to our page and have a read and do some enquiring!! Good luck to you all.  Jay 

[Daffodil54]

Hi ladies,

I saw my oncologist yesterday and she said that T will mean less good/bad weeks. There will be the initial buzz with the steroids, affecting sleep, followed by fatigue and lowered resistance to infection, muscle pain and sore throat/mouth. But less chance of nausea. Another challenge to face! 

I will update you after my T experience.

Have a good week everyone and rest, rest., rest. Fatigue may mean needing more time to recover than on ec.

Daffodil

[KJ1]

Hi just popping in. I started in July and will have my last Fec on Friday then on to T. I would also like some info about how to deal with T and what the differences are. I also start herceptin at the same time so any info on that would be really appreciated.  I have managed quite well so far, one stint in hospital due to temperature and quite tired but as l am teacher am on holiday at the moment. Due to go back to work as the T and herceptin start so really trying to decide how l might be and if l will manage. Hoping l just need to take one week off out of the three? Any info would be really helpful.

good luck to everyone here and hoping you all get through the rest of the treatment.

KJ

[Velvet]

Hi ladies

Gosh it's been very quiet in the June starters and hoping it means that everyone is doing well and maybe even enjoying some holidays away.

Daffodil54, I hope next Tuesday goes really well for you.  I'm just 2 weeks behind you so I had my 3rd FEC last Tuesday and am doing OK, just really tired and can't find anything to drink which tastes even remotely bearable. I start 3 cycles of T at the end of the month.

I've read some other threads about T but I would really appreciate it if anyone who is further along with T could give any advice on the T cycles?  My oncologist has stressed the real possibility of infection so I've become obsessed with cleaning - not that I think it will make much difference but it makes me feel better??! Any tips or advice gratefully received.

Hope everyone is doing well and managing to enjoy some of the sunshine between all the showers x

[Daffodil54]

Enjoy the break, Tripletmum.

I am enjoying having my family here from Italy. It is my good week, but due to start T on Tuesday. Hoping it will be better than my third ec.

Have a good weeks, everyone!

[Tripletmum]

Wow v v quiet on here for last few days. Just wanted to check in and ensure everyone was ok?

I am doing well after a 10 day horror fest. Now all I am left with is a dry mouth with v sticky saliva - if anyone has any tips on how to kick this I would be greatful.

Off on holiday tomorrow- can't wait for a change of scene if nothing else! Will catch up when I am back.

Much love to anyone with treatment this week xxx

[Jay68]

Hi Tripletmum - no worries - I really had no idea how painful oral thrush was until now - it's just so awful and for me the worse side effect possible.  Hope you have turned the corner and can eat something more satisfying very soon! J x

[Tripletmum]

Hey Jay68 - thanks for your top tips. Yes I have oral thrush as well so it is making the going tough. The Dr prescribed an oral gel and some tablets to really kick it - still feels horrible but I think I may have turned the corner. I still have not been able to eat anything in 3 days - even soup is too tough. Fingers crossed my mouth recovers as I can only take protein shakes for so long!!!!!

[Jay68]

Hi Tripletmum - I'm from the May 2017 starters - use salt water to gargle and soup to eat - filling yet easy on the throat. Did the doctor check you for oral thrush - it's very common on chemo - I get it each session and got prescribed Nystim - excellent stuff - basically a mouth wash but you can swallow it - so helps with thrush which could be low down in the throat and unable to be seen. Hope you feel better very soon J x

[Abulafia]

Hi Wandestrong.

Tripletmum, I regularly rinse with the Difflam, plus eat ice cream, and smoothies with crushed ice, plus iced water. Very soothing. I make my own smoothies with a cheap but good liquidizer from Aldi/Lidl.

[Daffodil54]

Tripletmum, it does seem to get harder as we go on. I believe that many have found relief using Manuka honey. I find custard and yoghurt easy on the throat. Do you have Difflam? I have tried to use the mouthwash regularly to keep an actual infection at bay. But I have to admit that the raw throat does affect most of what I taste.

Wishing you a speedy recovery and a good holiday!

Hugs to all.

[Tripletmum]

Hi Wande - so pleased you have a plan that fits with your childcare (I know the feeling). Fingers crossed your bloods are ok and this next round can be ticked off.

I am having a brutal time recovering from this last chemo round. I think I had anticipated being ok in myself by now but I am far from it. I also gave the 'mouth from hell' which the doctor today described as 'really nasty' - not what I wanted to hear. Hoping the antibiotics kick in soon as we go on holiday a week today and I am desperate to get away. Any recommendations on what to eat while swallowing is almost impossible will be greatfully received.

Much love to all xxx

[Wandestrong]

Afternoon all!

I haven't been on in a while, hope everyone is doing well (or as well as could be expected). I'm gearing up for FEC number 4 tomorrow morning. I have had a good week so far, apart from a sore throat and cough (no temperature), hoping my bloods are ok to go ahead tomorrow. I have a mental timetable and set childcare arrangements till I finish the last session (FEC no. 6) in mid-Sept after my son starts school, so would really hate any delays!

I had a better recovery after session 3, apart from the taste disturbance from day 3 to 8 and my period making an appearance (after 1 year of no periods during pregnancy and breastfeeding). Apart from that, the side effects have been manageable. 

Good luck to anyone having chemo over the next few days!

Wande x 

[Abulafia]

Thank you Velvet.

[Velvet]

Daffodil54

That's fantastic news that your scan results were so good.  It really does make it all seem worth it.

Abulafia, I hope your scan results will be just as good for you too.

Hope today is a good one for everyone x

[Abulafia]

Daffodil, that is wonderful. Very encouraging.

I have been told I will have an MRI after chemo no 4. Fingers crossed.

[Daffodil54]

Thanks, Velvet. Pleased you have the all clear with the blood test.

I had my ultrasound scan and the good news is that there has been a great response to the chemotherapy so it is obviously worth all the side effects!

Still tired and throat and oesophogeal pain but getting there.

Hope you are all doing well today.

[Velvet]

Hi Anniej

Thanks for your advice.  I rang the advice line this morning and they wanted me in for a blood test - thankfully that was all OK so hoping it was just a one off.

Daffodil54 and Tripletmum - hope you are both having a better day today and that your symptoms are getting better.

Big hugs to all x

[Daffodil54]

Sorry to those still feeling poorly. I am day 6 post ec and still having side effects. Today is throat and joint pain day but 4 injections still ahead, so probably a few more days of this to go. I have ultrasound tomorrow and hopefully will get to see surgeon.

[Tripletmum]

Hope everyone is doing ok. I am on day 6 post last chemo and once again have crashed - this time vomiting for the first time which was not a nice surprise. Hoping to take this week quietly but with 3 little people now on school holidays it may not be. I am soooooo ready for all these side effects to be over.
Much love xxx

[Anniej]

Hi Velvet, sorry you are having such a mis time. I was on EC, but all chemo is cumulative, unfortunately. I kept a temp and side effects diary so I knew, sort of, what happened on what day. It did help prepare me for each session. Re nose bleeds, I think some ladies have mentioned it, but I wouldn't say it's 'normal'. Was it bad? Why don't you ring the alert line and ask them? They are always very helpful, I found. The filigrastan make your bone marrow produce white blood cells, and can make you feel yucky. Once they are finished your own body takes over, or should do. I was told to be careful re infections in second week as my neutrophils always crashed after chemo and my body struggled to get back to normal . My chemo was cut short because of this. The third week is a good week, just getting you fit for chemo again. 😱  Hope everything stabilises for you, and you can manage your side effects. Big hug. X

[Velvet]

Hi Abulafia and Misyangel

Thanks for the info about symptoms.  I definitely took longer to recover from the second cycle of FEC so it seems to be just take each day as it comes.  I read on someone's post that they usually start to feel better once the injections have finished and I think that was when I turned the corner this time too.

Also, I had a nosebleed yesterday so presuming that's another delighful side effect?!

Hope everyone is having a good weekend and doing well x