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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Thanks Blackcat and JulieME for your kind messages.  It is a relief I can tell you!  Blackcat - so pleased you are well over halfway with the treatment - well done, its been a long road for you.  We have all come a long way since this time last year haven't we?

I have been thinking about how difficult this situation must be for some people living with dementia - my mother had it and I think would have really struggled.  

Love to all xxxx

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Re: August 2019 Chemo Starters

Congratulations Wolvesgirl!!!  Such a relief for you.  (I've thought about you during the last few days as we hadn't heard anything, but didn't want to ask in case it wasn't the great news you've now had).

Well done, and time to celebrate 😁

Julie xx

 

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

Just a quick message to say that this is brilliant news!  I know how stressful scans are, and it’s not surprising that we are all anxious about them given what we have all been through over the past year.  I can hardly believe that it is a year now since most of us in the August group were being diagnosed and starting treatment.

I hope that you will have a relaxing day, and that you will be able to do something really nice to celebrate the good news.  Must get back to work now, as I have calls coming in on two phones (sadly the lockdown is creating a lot of pressure on people living with dementia and their carers, so I am incredibly busy).  I don’t have much to report, except that I have completed 12 out to the 18 cycles of herceptin/perjeta infusions and am doing fine.

Take care, and much love to you and all on the thread.

Blackcat xx

 

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Re: August 2019 Chemo Starters

Hi everyone

Just a note to say that I got a letter this morning - first year mammogram was clear.  Obviously delighted.  It was surprisingly stressful - that scanxiety really got me so I empathise with anyone else that feels it.  Hope you are all well xx

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Re: August 2019 Chemo Starters

Wolvesgirl hope everything went 👍💕💕Shi xx

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Re: August 2019 Chemo Starters

Sorry that should have read Happy Birthday 🥳 🎂earlier not hasn’t 🙄text gremlins 💕💕Shi xx

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Re: August 2019 Chemo Starters

🤞🤞🤞xx

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Re: August 2019 Chemo Starters

Hi everyone

Anna - happy birthday for Saturday, hope the weather stays fine and you can be out in the garden.  Both, I totally get the anxiety - I constantly think that any ache or pain (of which there seem to be a few) must be spread and I have to talk myself down.  Like you Anna, I have to stop thinking like a nurse!  I have not gone down the counselling route as I have a great friend who is RMN and always knows the right words straight away so I turn to her - not too often as she is an NHS Chief Exec and has enough to worry about without me!  I think this is our new normal and we have to deal with it - as Shi says, it will pass - all things do.  So, off to the mammo in a minute - fingers crossed please!! xx

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Re: August 2019 Chemo Starters

 

also!! Happy birthday for Saturday Anna!  
🥳🥳

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Re: August 2019 Chemo Starters

 

Hello ladies

 

Yes AnnaGabbana that’s my understanding that although the chemo did shrink my tumours (I had 2 one went from 22mm to 15mm and the other from 8mm to 4mm) it didn’t get rid of them all together so that’s why they wanted me to have the extra as it has been proven to reduce the risk of it returning. I’m not going to lie that the fact it didn’t totally get rid of it scares the hell out of me and I’m struggling to think of anything else at the minute. Although my BCN has tried to reassure me that there’s many ladies that have had the same outcome as myself and not had any further problems. I guess it’s always going to be a worry for us all that you have to try and deal with. 

Lisa xxx

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Re: August 2019 Chemo Starters

Hasn’t birthday for Saturday Anna gabanna 🎂 I saw something about berzosertib yesterday but not had chance to look into it yet, so not sure if that’s one to speak to onc’s about if needed in the future? Glad your scans were ok 👍 step by step you will piece yourself back together ❤️ And then one morning you wake up and you just feel like you again, I can’t explain it, it’s just a feeling you get ❤️ And it’s lovely enjoy it ❤️💕💕Shi xx

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Re: August 2019 Chemo Starters

Good Morning All! First off good luck with your mammo today, Wolvesgirl! Shi, my onco said there are no drug trials yet for someone who had PCR like me and the Capecitabine is for people who did not have a full response to neoadjuvant treatment? Although she did say she will let me know if there will be any trials I could participate on as soon as she hears from the grapevine.

Well done, Lisaloo for getting into a trial tho, hopefully it will help them find another treatment pathway in the future. Spottycotty it is nice hearing from you too I know what you mean with shielding with kids tho, mine are 14 and 20 and I still feel the same and food cupboards are always bare. I have always been following the August group post as you lot are very positive and reading positivity got me through treatment. Recurrence I guess is one of biggest fear I have, I had bad joint pains 3 weeks ago and phoned my BCN whether its still chemo related, she contacted my Onco and they requested an xray and a bone scan which scared the crap out of me. But, it's all clear so I am well happy. I have started having weekly sessions with a MacMillan counsellor via Zoom two weeks ago and it is helping me realise my fears are justified but it is not a reality and to stop acting like a nurse lol. I will be 41 this Saturday and grateful to alive and cancer free, and taking each as it comes 🙂 Have a lovely day people! Sorry to hijack your thread lol

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Re: August 2019 Chemo Starters

Hi Julie

That is interesting that they have started this now so far into the pandemic.  Perhaps they have had a problem.  I don't have to go back to the unit until late next month for Zometa so we shall see whether they want to do the same.  I need to find out where bloods are taken as the phlebotomy services have all changed.  Take care x

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Re: August 2019 Chemo Starters

A very quick one - something unusual, but perhaps you've all had the same?  I had a call from the hospital today to say I have to go in on Wednesday this week for a COVID test, ahead of my Herceptin injection on Friday.  I have to turn up and sit in the car park and they'll call me from there to go in.  It's a pain having to travel there twice this week, but I know it's essential that the hospital is kept safe.  I don't know yet whether this will happen each time now (3-weekly jabs), as when I've been before I've only had to have my temperature taken several times during each visit.

Ah well, could be a lot worse I suppose!

Love Julie xx

 

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Re: August 2019 Chemo Starters

Hi everyone

So good to hear you are all doing well and progressing through or have finished treatment.  Lisaloo - really interested to hear about the extra chemo - can't believe you have already done four lots!  It got me thinking, as did the posts from Anna about how to have a discussion with oncology about things like this.  I have effectively been discharged from the hospital with a supported self care programme which gives me independence from appointments etc.  In many ways I am really happy with that but in others not so much I don't want to ring unless there is something wrong rather than just to query about the potential to get on a trial for instance.  Although, having said that, I can see that there are no breast cancer trials at my local trust so there is probably no point.  I am still terrified about my mammogram on Wednesday - feel just like I did at the beginning of this journey - and I have a Zometa infusion next month so will have bloods done then so they would indicate problems with my liver or renal function.  Thats it for me so fingers crossed it stays that way.  Keep going girls - you have got this.  Much love xxx

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Re: August 2019 Chemo Starters

Dear all,

It’s always so nice to hear from you. AnnaGabanna, I absolutely love this thread, they - we - are all amazing women and have supported each other with positivity and humour through our treatment. Welcome!

 I too am Day 10 post radiotherapy. All well so far, I was tired for a couple of days but am feeling much better now and if occasionally I feel tired I take a nap in the afternoon and that resets me. I am on the 2nd month of hormone treatment too and have achy joints but the workouts (Joe Wicks with the children) and yoga have hugely helped. In fact I am feeling better since the lockdown because of the exercise and yoga, plus of course having my family around too. Having said that, I am going stir crazy now with homeschooling my three! Thank goodness the eldest is back to school tomorrow. 

I haven’t spoken to the oncologist yet, so I don’t know if I will have a mastectomy but a bit of me wants to make sure this doesn’t happen again. Anyhow, I have not been out at all, apart from my dog walking and going to the hospital. I reckon I am not high risk but have no wish to test it and catch Covid-19!

Hugs to you all 

Hollyleaf

 

 

 

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Re: August 2019 Chemo Starters

Hi Anna gabanna there is capecitabine. Mai7 has done a thread on here for tnbc news on treatments. 💕💕Shi xx

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Re: August 2019 Chemo Starters

Hi I had a lumpectomy and Axillary node clearance they took 12 nodes out and all are cancer free cells, I had pathological complete response to chemo❤️ But because I had lumpectomy and initially I had 3-4 fluffy nodes, and being TNBC, they recommended rads for 4 weeks but compacted into 3 weeks due to COVID. So they zap my boob, axilla and supraclavicular area which is the bottom of the neck x I am still fatigued it’s day 10 post final rads today. 

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Re: August 2019 Chemo Starters

 

im sorry I don’t remember the name of it 😕🤔 Iv been ok side effects wise 🤞🏽 I think main side effects with this type can be stomach related, Diarrhea and sickness. But like with every chemo everyone’s side effects can be different. I have been a bit achy, but no hair loss with this type of chemo. 

Did you have any radiotherapy? Iv been told I don’t need that as I had a full mastectomy and results from lymph nodes taken was negative from any cancer. 

Lisa xx

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Re: August 2019 Chemo Starters

I’ve finished all my treatments thanks for asking. Any side effects? And what was the name of the trial? As I will mention it to my Onco xx

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Re: August 2019 Chemo Starters

 

Hi AnnaGabanna 

Its a very new trial that’s been done apparently, sorry I forget the name. It’s to reduce the risk of a reacurrance. The chemo is tablet form and I have it for 2 weeks then I have a week off, bloods, checkup then start the cycle again.
How are you doing?  

Lisa xxx 

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Re: August 2019 Chemo Starters

Hi All I’m from the Sept 20 group also following Lisaloo and Wolvesgirl as they are both TNBC like I am. And I find it awesome that you keep updates on here❤️Lisa, how comes you need to have extra chemo? 

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Re: August 2019 Chemo Starters


Hi ladies 

 

I did put a reply on here the other day but it doesn’t seem to have posted! 

it’s lovely to hear how everyone is getting on and that everyone is managing through these very strange times.

Im nearly finished cycle 4 of my extra chemo and it’s been decided that I’m having 6 so I’m getting there. Apart from feeling very tired Iv been ok so far 🤞🏽 Iv been going to my doctors for my bloods taken and having telephone appointments for my checkups between cycles, then I go every three weeks to pick up my tablets, the chemo ward has been moved from Darlington memorial hospital, my main hospital to bishop Auckland hospital which is a much smaller and a no a and e hospital, I feel safe going to pick my tablets up there and to be honest it’s a little ride out as it’s about 30 mins away.   
I’ve been going out for walks most days, just making sure I keep my distance from people and I’m now able to meet up with someone for a socially distanced walk which is nice. I’m currently furloughed and unable to go back to work anyway with me being in the at risk group. 
I have struggled some days with trying to remain positive, which is unlike me, I think it’s a mixture of having to have more chemo along with everything else that’s going on at the minute, more time to sit about thinking! 
After a conversation with my BCN she said I’d have an appointment with my oncologist in sept and I’d be due a mammogram on my remaining breast in sept too. My appointment with the plastic surgeon for my reconstruction has been cancelled which I’m ok about as I’d rather wait until all is a bit more stable with the world. 
take care ladies and big hugs to all. 
Lisa xxx

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Re: August 2019 Chemo Starters

Hello all - glad to read your updates, and that we all seem to be doing OK...

I love 'scanxiety' and am definitely going to use that!  I believe my health district don't do a follow-up mammogram until a year after treatment has finished (I'm taking that to be the radiotherapy, rather than my continuing 3-weekly Heceptin which doesn't finish until the end of August).  I'm pleased with that, because my dodgy boob is still quite painful sometimes - when squeezed - and I really wouldn't fancy having it squashed in the mammogram machine at the moment.  In fact, I decided I would ask for it to be delayed if they did ask me to go in for one soon.

I had an phone update with the oncology consultant about a month ago, and she decided to keep me on the Herceptin for the full 18 cycles.  Apparently there has been a trial where you stop after 9 cycles and there's no difference in the outcome, but the onco and I decided together to keep on with the full 18 to be on the safe side, and I've only got 4 more to go now.  She said that due to my age (60!) I was at low risk of complications if I was to catch COVID-19, even though the Herceptin has meant I'm on the 12-week shielding list as it definitely lowers immunity.  Just thought I'd mention that, in case it makes anyone feel happier about going out (it certainly did for me).  She also said it was the Letrozole (hormone therapy) that was making my legs/hips ache and that it should settle down after the first 3 months (I've been taking it for just over 2 months now).  Fingers crossed, as I'm to be on it for "at least 5 years".

I'll also be sent for a bone scan when hospitals start getting through the backlog (I haven't had one of those yet, despite being on Herceptin and Zoledronic Acid).  So I agree, Wolvesgirl, the differences in our treatments / checks have been huge!

It will be a year since I was diagnosed soon.  When I feel a little down at times now (probably brought on by the lockdown) I only have to remind myself of what's been accomplished over the last year to stop me feeling sorry for myself now.

Best wishes everyone, keep on keeping on!

Love Julie xx

 

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Re: August 2019 Chemo Starters

SpottyCotty,

I am constantly amazed by the difference in the way units work - some seem to have quite close follow ups, others just the annual mammo, but the latter does seem to be a standard - I am sure its in some NICE guidance or other so I am sure they will do yours.  The appointment might just be the BCN checking in with you.  Apparently the anxiety caused by an impending mammogram is called Scanxiety!  Its certainly a good descriptor.  xx

 

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

im pretty much the same as you with my aches and pains, pretty much all my joints hurt but I’ve been doing a workout every week day during lockdown while the kids do their lessons.

When I was referred from the breast unit to oncology Last year, I received an appointment to go back in July this year...I presumed this would be for my yearly mammogram. 
I have just received a letter to say this appointment will now be done Over the phone!! I’ve rang the consultants secretary to query this and I’m waiting for a call back as we speak.   I really hope that they haven’t  decided not to do the mammograms so was pleased to see your post, fingers crossed that this was just a check in of some sort 🤷‍♀️

Hope everyone else is ok, fingers crossed for you Wolvesgirl, the anxiety is immense is it!!

Let us know how you get on please xxx

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Re: August 2019 Chemo Starters

Hi everyone

Hope you are all well and continuing to recover from the onslaught our bodies have taken over the last year or so.  Blackcat - you must be nearly finished your Herceptin treatment now?  I hope everyone has avoided the dreaded covid so far?  I am really well, pretty much recovered from the pneumonia and up to three Zoom Zumba sessions a week plus lots of walking and gardening when the weather allows.  I have a few aches and pains still from the radiotherapy but believe that can be long term so ignore them really.

I have just had a call from the hospital to arrange an appointment for my first mammogram - they had spaces next week so I am going on Wednesday.  Has anyone else had theirs yet?  I must admit to feeling a bit anxious now and wondered if that was just me?  I really don't know how I would cope if something else shows up - it was such a shock last time - I skipped into my mammo appointment without a care in the world and within a week it had all come crashing down.  I think thats the problem - there was no lump or other symptoms then.  

Anyway, just thought I would touch base.  Much love xxx

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Re: August 2019 Chemo Starters

Hi everyone,

Great to hear how you are all doing - I can’t believe it’s over nine months since we started out together on the chemo journey last August!

Spottycotty - I’m so glad to hear that you got checked out and that everything is OK.  I haven’t much news to report, other than that I’m still going for the three-weekly Herceptin/Perjeta infusions (cycle 10 of 18 is next week), which our hospital has moved to the Nuffield hospital nearby to keep oncology patients away from COVID-19.  I’m also on bisphosphonate tablets and Adcal.  My radiotherapy finished on the day lockdown started, so seven weeks ago now, and I haven’t had any side effects but am still using the R2 waterjel cream which was prescribed by my GP and seems to be excellent for protecting the skin.  My hair is growing thickly and is about four inches long now, so could really do with a cut as it is getting to have a bit of a wild lockdown look!  I’ve been back at work full-time for almost three months now, although working from home as the Herceptin/Perjeta treatment has put me on the 12-week shielding list because it can affect the immune system.  

Much love to everyone on the thread!

Blackcat xx

 

 

 

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Re: August 2019 Chemo Starters

Hi  Everyone 

My appologies for gate crashing your thread yet again. So nice to hear how you are all getting on and its really does help to know that there is light at the end of this tunnel  and for the advice that all so kindly share. 

Just wondered if any one had experienced a tightness in throat. I have spoken to oncologist and he has discussed also with his team and cant find a reason for this. My throat isnt sore but just feels like im bring strangled and feels so tight. I can swallow ok and in fact appears easier when eating. Ive tried anti histamine  / paracetamol / throat spray . Just making me feel so low as its so uncomfortable.  

Love to you all and thank you for reading .

Love Daisy xxxx

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Re: August 2019 Chemo Starters

Hello everyone,

Spottycotty I am really glad to hear you are all clear. I am sure after treatment moving on must be difficult for everyone and we must treat the lumps and worries seriously at the same time as getting on with our lives. It will take time. I start radiotherapy next Thursday and have been told to cover up the area and no sunshine, which is a shame - plus I think no sunshine for a year? I got myself a large brimmed hat and will dig out the sun lotion too. Any other tips that you have?

Stay safe and enjoy the sunshine,

Hollyleaf

 

 

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Re: August 2019 Chemo Starters

Thanks Wolvesgirl 🥂

Seems to be common doesn’t it, hope it doesn’t make us complacent though!

Actually, now you mention it, I have been skipping in the garden during lockdown so it’s probably that that has aggravated it !!

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Re: August 2019 Chemo Starters

Hi Julie,

my last rads was 21st Feb, so 11 weeks.

my bad boob feels fuller, has some pain and feels a bit lumpy, the lump that worried me, I feel easier when I’ve got body lotion on the area, I marked it with a pen before I went as I can’t always feel it....

I have a friend who finished her rads last October and hers has started to hurt too. 
It appears to be common but it’s worth a ring just to put your mind at rest if you’re worrying.

 

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Re: August 2019 Chemo Starters

Spottycotty what a relief....  I laughed about the comments - I am definitely not skinny but my boobs are not that big either and the affected one does feel more dense now than it did.  I think as we do more as we are recovering  impacts on it feels - I am doing more exercise and lots of gardening so I think that has probably caused some aches and pains. Also I don’t tend to wear a bra in winter months but now I am back in t shirts I am and I think that has made a difference too.  The nurse said yesterday that as my CT scan that I had when I was in hospital with pneumonia was clear they wouldn’t rush to do another one for this. 

Julie my aches started 2 months after radiotherapy finished but I also had pneumonia (or did I - am wondering now whether it was COVID) so I was pretty achy after that too so the two got a bit muddled! 

Spottycotty I will have a spritzer for you tonight!  xxx

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Re: August 2019 Chemo Starters

Brilliant news Spottycotty!  Congratulations, and I think you were SO right to have it checked out.  Really pleased they could reassure you.

You certainly deserved that beer (and a few more 😏)

Could you remind me how long it's been since your radiotherapy ended please?  My dodgy boob seems to be changing regularly, and I haven't seen anyone since the start of radiotherapy (only telephone calls to consultants etc) and I'm not sure what I should expect.  I'm still having 3-weekly Herceptin (plus pills) but the chemo nurses don't examine me.  The boob does ache quite a bit, although not all the time.

Thanks, and well done again!

Julie xx

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Re: August 2019 Chemo Starters

Hi...all good..phew...

I was so scared!


So much worse than the first time round!!
He said this is the time things change after radiotherapy, sent me for an ultrasound and she said my boobs are really dense and I’m skinny (she meant small boobs haha!) so I will feel every lump and bump.

They didn’t make me feel as though I’d wasted their time though and said to keep coming back if I was worried...got home and had a beer and a wine! Feel like I’ve been given a 2nd chance, I thought if its back already then I’ve had it!

Really glad I went though, got home and had a beer!!

 

 

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Re: August 2019 Chemo Starters

Spottycotty

I am so sorry - I absolutely identify with the worry you must be feeling but hopefully the ultrasound will have put your mind at rest. I have been worried sick too. Please let us know how you are. Much love xxx

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Re: August 2019 Chemo Starters

Wolvesgirl... I’ve just smiled at your post, I am currently sitting in the breast care clinic waiting for an ultrasound.
My bad boob Has been Hurting, feels fuller and I have felt a new gristly bit so rang on Monday and here I am.. **bleep**ting myself to say the least! Much worse the second tome round I can tell you, ignorance is bliss the first time I think!!

Anyway, hopefully it’s nothing sinister 🥺😩😬

hope everyone is getting on ok...

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Re: August 2019 Chemo Starters

 

Hi Daisy, Wolvesgirl and all other ladies.

hope everyone is staying safe and well.

Daisy it does sound like your treatment is similar to mine and I understand your frustration at more chemo after surgery!  It’s definitely not what you want to hear. Iv been told I won’t need radiotherapy.. maybe it’s to do with my lymph nodes coming back negative and the fact I had a full mastectomy 🤷🏽‍♀️ Did they say what type of chemo? I’m on the tablets and half way through my second lot already. I had more side affects with the EC than the pax but everyone’s different so it’s hard to say. 

wolves girl I’m glad your starting to feel more yourself and I know what you mean about being on hyper alert! Every niggle freaks me out then when I speak to someone about it it seems to go away! 
Hope everyone is enjoying this nice weather as much as you can ☀️ 

Love to all 

Lisa xxx

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Re: August 2019 Chemo Starters

Dear Daisy

I don't come on the forum so much now - part of my moving on strategy - but as a fellow nurse and midlander I think of you and your journey.  I am so sorry that you had news that you may need further chemo - I can absolutely understand that is not what you wanted to hear but fingers crossed it won't be needed.  

How have you got on with the EC?  I had more side effects with FEC than with Docetaxel but we are all different so hopefully you will be better with the next cycles.  

I am on a thing now called Supported Self Care which is basically not being called back for appointments unless you have raised an issue.  I quite like it - and yesterday I tried out the system as I wondered when I might have my first mammogram as it was due late May/June but obviously things will be different for a while.  Apparently they are looking to start again 18 May and will have about a 6 week backlog.  I also asked about some discomfort I have developed in my breast - you can imagine what I was thinking!  Apparently post treatment discomfort can develop at any time (mine was 2 months post radiotherapy) and as long as there are no lumps or other specific signs it is not too much of a concern.  It certainly does not require any analgesia but it frightened me a bit.  I think I am just a bit hyper alert at the moment.  Since I had the conversation with the nurse yesterday it seems loads better so there is some psychological element to it as well I think.  Apart from that I am getting my life back as far as lockdown allows and feel better than I have done for months.  

Love to you Daisy and all on the thread as always, xxx

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Re: August 2019 Chemo Starters

Hi lisa

How are you feeling now following surgery ? 

Reading through your post it seems like i may be on a similarly path as you but a few months behind.

Im starting the EC treatment tomorrow for 3 cycles then due another ultra sound scan before meeting with surgeon to see what surgery i will need ( tnbc grade 3 2 lymph node and a necrotic node in breast tissue ) . I went to see oncologist yesterday and he had said i will need radiotherapy and ??? More chemo depending on histology results . I didnt realise that i may need more treatment and feel really low as i thought in my head that this nightmare would soon be over and i could get back to some normality.  I  just cant seem to think of anything else . My daughter is due to go to university and i wanted to be well. 

I have experienced many side effects with the paclitaxel and carboplatin and hoping that the EC treatment isnt as harsh. 

Sending you lots of love 

Daisy xxxxx

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Re: August 2019 Chemo Starters

Hi again

 

Isn't it lovely that we have been on and updated how we are doing?  I know that as we move along this road that our use of the forum will reduce but it is nice to dip in and out every now and then as I have really come to care for you all - our merry little band!  

 

Hollyleaf - yes you can drive during radiotherapy - I drove myself every day to the appointments and never had a problem at all, it was actually nice to be independent after being driven to and from chemo.  In fact, although I know that times are different at the moment but by 14th May it might have been lifted at least a little and I used to combine other things like the gym or shopping with my radiotherapy appointment as you would do normally.  

 

Creams for radiotherapy - I used Aveeno which met with approval from the radiographers- during the course you will be seen by a specialist radiographer at least once, who will talk about your skin condition - it will be seen every day of course and they will monitor it and put interventions in if required.  I put the cream on twice a day after showering whilst I was having treatment and for a couple of weeks after and had absolutely no problems as Julie said.  If I had an early appointment (the earliest was 0800) I didn't put it on - they said to do it afterwards.   I am still moisturising but with a nicer cream now as its a good thing to do generally and to be honest you would be hard pressed to see a difference between my breasts in terms of the skin or anything else for that matter.  I can't even see the scar any more and the one for the SNB is very pale now.

 

I do understand about still having the surgery to come but I am sure you have taken reassurance from the second opinion agreeing with the first.  It is such a long road but the end is in sight and you will be able to get on with your life!  A rest after the radiotherapy will be nice, especially over the summer.

 

Anyway, take care all, much love xx

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Re: August 2019 Chemo Starters

Dear all,

 

 I am also loving reading how everyone is getting on. My hair is coming back nicely and I even go out occasionally without anything on my head - I do look like a woman soldier 😊 but it doesn’t bother me too much. 

 

In terms of next steps, I have my CT scan next week and starting radiotherapy on 14th May so I hope to have all finished by mid June. The surgeon says he then will get back to me 3 or 4 months down the line, to consider a mastectomy, which seems very likely to me. My breasts are too small to take any more tissue out. It really bothers me that I won’t be ‘finished’ for a while yet - although after radiotherapy things will settle for a good few months. I asked for a second opinion (from Sheffield which have a specialist cancer centre) and they agreed with my surgeon, which is certainly reassuring. 

 

Julie, thank you so much for the links, I will have a good read. You all are always so kind and your collective knowledge so helpful. This thread has been a real mood booster to me - incidentally, I have started yoga on an app and absolutely love it. 

 

I wanted to ask - can you drive while doing radiotherapy? Of course none else except me will be allowed in the hospital now, and I am planning on buying disposable gloves and masks to be safer. Going every day scares me but has to be done.

 

Meanwhile I will also start daily letrozole and weekly tablets of zoledronic acid plus 3-monthly injections. Spottycotty how did the bone scan work? I have chosen to defer mine until later. And finally, I remember you mentioning creams for the radiotherapy?

 

 Thank you so much for replying, you always make me feel like I am receiving a big hug!

Love

Hollyleaf

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Re: August 2019 Chemo Starters

Hi everyone

 

Sorry to hear your surgeon didn't get the required margins, Hollyleaf.  I had to have a second operation as they'd only got 0.7mm clearance from the first (lumpectomy) op, so the second op was just to remove the remaining 0.3mm and was successful.  In the early stages I thought I was going to have to have a mastectomy and I found one of the Macmillan books really helpful in deciding whether to go for reconstruction.  I've looked on their site for the booklet, but can't find it - although all the information appears to be here:  https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/should-i-have-breast-recon...

 

I also found this very helpful, as there's so much information to remember! https://your.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/975-source?_ga=2.32300151.83...

 

Since my op, I've had 3 weeks of (daily) radiotherapy and, as Wolvesgirl said, it was really easy and I hardly had any side effects... just some dry skin, which has almost gone now.  I finished radiotherapy on the Friday before the virus lockdown started on the following Monday, so didn't really manage to get out and about at all!  In the final week of radiotherapy the hospital experience was very different (taking temperatures before you even entered the building, distancing etc etc) but it felt very safe as they are aware we're vulnerable and go to extreme lengths to make contact as little as possible.  I'm now on Letrozole (daily tablet for a "minimum of 5 years") and haven't experienced much in the way of side effects - just the odd hot flush, which is a relief.  I'm also having 3-weekly Herceptin until the end of August and 6-monthly Zoledronic Acid.  But it is starting to feel that hospital visits are occasional, rather than it becoming the whole focus of my life.

 

Good to read everyone else's updates as well.  My very best wishes for your recovery. Strange times we all live in, but we'll cope... just like we have over the last year or so.

 

Julie xxx

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Re: August 2019 Chemo Starters

Hi all

 

Lisalou - so pleased you don't have to lose your hair again after all you have been through!  Hopefully on the 29th you can clear up the detail re how many cycles.  I do hope that you continue to be trouble free through it all.

 

Spottycotty - how is your hair?  Didnt you have the integration system?  Have you got rid of that now?  My hair is still curly but growing well and getting back to its thick and coarse self.  I do hope you get your MRI and it can put your mind at rest.  I agree, if they are not too concerned I think that is a good sign but you need to know for sure.  Have you still got the pain you had during radiotherapy?

 

Funnily enough I had a letter today from the breast clinic telling me that I am now on "supported self guided care".  It appears that I won't get called for any appointments apart from the annual mammo and the 6 monthly Zometa unless I call them with any concerns (or the mammo shows something).  Must admit I quite like that process.  I am due a mammo in May/June time which will be a cause of some anxiety I am sure.  

 

Anyway, off outside for some activity - take care all.  xxx

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Re: August 2019 Chemo Starters

 

Hi ladies 

 

I’m unsure of the cycles I’m having tbh as when I spoke to my oncologist over the phone I’m sure she said 6 months! 😳 but speaking to my BCN yesterday she said it’s not usually that long and she couldn’t see anything on my notes. Iv a telephone appointment on the 29th so I’m going to clear that up then. No hair loss with this type of chemo which I was over the moon about as just having got a full covering which has thickened up loads to, I wasn’t happy about the thought of loosing it all again! 
Spottycotty hope everything’s ok with your scan it’s good that there being thorough and listening to your concerns. 

hugs 
Lisa xxx

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Re: August 2019 Chemo Starters

Hi everyone, 

I feel like I haven’t been on here for ages!

Lisaloo, I’m triple negative too but I am the same as Wolvesgirl and had surgery/lumpectomy first, I’m very interested to hear you’re having more chemo, I really hope it’s not too intrusive for you though, sounds like you are being well looked after..

Hollyleaf, sorry you have to have more surgery but better to be on the safe side I suppose, my pathology report says my margins were less than a mm which horrified me but they haven’t offered more surgery, I’d take what they offer!!

 

Updaye from me, I went for a bone scan and they identified a hot spot in my elbow, went for an X-ray and they think it’s a fibrous displaysia (🤷‍♀️) they say they are pretty sure it’s benign but I need an MRI to be sure, I should’ve gone for this Good Friday but they cancelled it until things are back to normal as they said I’m safer at home!!

Im hoping the fact they aren’t too worried is good news!?!
Anyway, take care everyone, love reading how everyone is doing xxx

 

 

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Re: August 2019 Chemo Starters

Hi Lisa

 

So glad you are doing well following your op before all this started.  I was interested to read about the oral chemo - it makes sense to do that to absolutely make sure everything has been chucked at this thing!  I am triple negative too but had the lump out before the chemo and radiotherapy so did things the other way round to you.  It is a worry about recurrence but hopefully this will make sure you don't need to worry and you have the benefit of not needing radiotherapy!  Bonus.  How many cycles will you need to have?  Do you lose your hair etc again?  I do hope not!  Keep well and let us know how it goes.  Much love

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Re: August 2019 Chemo Starters

 

Hello Ladies 

 

So Sorry Iv not been one for a while, all my notifications have been going into my spam for some reason! 
I hope everyone’s safe and well. 
Just a bit of an update on me, can’t remember where I was up to but I had my op (mastectomy) on the 4th March just before covid really kicked in thankfully! I would say I’v got full movement back, still some little twinges now and again but apart from that all good. Results from surgery where it had shrank the tumours one from 22mm to 15mm and the other from 8mm to 4mm the lymph nodes that were taken out were negative for any cancer...but because it hadn’t got rid of the tumours completely there was a higher risk of it coming back with me being triple negative therefore they wanted me to have some more chemo! 😫😫 Capecitabine which is in tablet form, I take 4 on a morning and 4 on an evening for 2 weeks then have a week off then start the cycle again. I’m nearly finished my first cycle and fingers crossed Iv had no major side effects. They said with this form of chemo it’s usually gastric side effects. It’s a very new trial that’s been done for triple negative that shows that having this extra chemo significantly reduces the risk of it coming back again. My oncologists words were your only young and were going for cure, so that’s why they want to throw this at it too. They’ve said because I had full mastectomy and negative results from lymph nodes that there’s no need for radiotherapy. Think that’s where I’m at so far. I obviously had a bit of a melt down at the thought of more chemo and that it hadn’t fully got rid of the tumours like I thought but my BCN said that sometimes it can not shrink it at all so the fact that mine has responded is still good. It doesn’t actually feel like I’m having chemo as I’m just taking tablets if that makes sense. I’m going to my own doctors to have my bloods taken then just have to pick my tablets up from the chemo ward, which has been moved out of my main hospital to a smaller one near by which is a “clean” hospital (no A AND E Dept and no one with suspected covid) 

 

Holly I’m so sorry your surgeon didn’t get the clear margines they wanted to get, I would say to you that the mastectomy op and recovery is really not as bad as I thought. Reconstruction wise mines obv been delayed now but I’m hopefully going for them using the fat from my stomach. If I was having both done then I would of probably of gone for the implants so they both looked the same. Although implants will need more surgery further down the line as they would anyone getting them. It’s such a hard decision to have to make though so go through it all with your BCN and tell her all your worries. 
if you want to know anything else please  just ask me. I’ll make sure I check my spam! 😆 

 

Big hugs to all 

Lisa xxx

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Re: August 2019 Chemo Starters

Hello everyone

 

Good to hear that so far we are avoiding the dreaded Covid - I am so sad that I have not been able to take up the offer of reregistering and going back to work but having been advised against it because of my recent pneumonia (I wonder if that was actually Covid anyway as I had some of the symptoms) I have been social distancing and regaining my health.  I feel loads better - still a tiny bit achy around the shoulders if I do a lot but I can breath deeply with no pain now and have been playing scales on my flute to improve my chest capacity.  I am doing Zumba via Zoom and walking a few miles a couple of times a week so slowly getting there.

 

Hollyleaf, I can't add anything to what Blackcat told you as I have not had to consider mastectomy and all the options that go with it, but as she says, the BCN will be able to take you through them.  Re radiotherapy - I know they are still doing it here and people say that the social distancing in the department is working well.  The actual radiotherapy is not difficult - just a bit tedious for 20 days but so important for you of course and will be another treatment to tick off.  I am now 2 months since my last one, still getting twinges, I believe that is to be expected but I am worried all the time about recurrence.  I don't know how I get past this - maybe once the first mammo is done and is hopefully clear.  Its unexpected to be honest, but it did occur to me that it could be associated with the fact that this journey started this time last year - the weather was lovely, just like it is now so maybe thats the reason, its just bringing it back.  Anyway, I just have to get on with it!  

 

Stay very safe everyone and Hollyleaf do let us know how it all goes and much love to everyone xx

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Re: August 2019 Chemo Starters

Dear Blackcat,

 

Thank you so much for the reply. It’s so good to know you feel happy with your choice. You are so brave, I don’t think I could cope being flat sided, even though I have tiny breasts. I am pretty sure I would not want implants or prosthetic aids. I am unsure however they could offer me some other reconstruction but I have not explored the options with my surgeon. For now I will only have radiotherapy, at least one more stage out of the way. The oncologist also wants me to start hormone therapy straight away. It feels quite daunting but I already have menopausal symptoms so, hopefully, it won’t be too different.

 

Much love to you all,

Hollyleaf