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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Hi everyone, 

Kidney stones Wolvesgirl?! Sounds uncomfortable, I hope you get them sorted soon... glad everything else is ok, you are so right, this time last year was so hard, gruelling even...I have a friend going through chemo at the minute and it does bring it all back...

Im now back at work, albeit in the office on restricted duties. I have been off shielding all this time as they told me to (I work in a Prison) I’m glad to be back and getting back to some normality at last, the shielding made me still feel like I was Ill really!!

I have lots of pains in my joints after chemo, especially hips knees and fingers..anyone else???

Other than that, I have had a clear mammogram and have a follow up appointment with the nurses in October which was unexpected but welcomed!!!

Hope you are all well.....

Take care and speak soon 😘

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Re: August 2019 Chemo Starters

Hi Wolvesgirl (and everyone),

It’s great to hear that you are doing well, and have got back to all your fitness activities.  As you say, it’s a big difference to this time last year, when we were all in our first few chemo cycles and struggling with the side effects.  I remember when you ended up in hospital, and how glad everyone on the thread was when you got back home.  This time last year I had just had my second EC treatment, my hair had all fallen out and everything tasted disgusting.  This year I am feeling fine and would be able to do all my normal activities if it wasn’t for the COVID-19 restrictions - as I am still having Herceptin/Perjeta antibody treatments in the chemo unit every three weeks, I have been told by my oncologist to keep to the shielding rules (apart from walks outside for exercise) so as to minimise the risk of any infection being brought into the unit, where obviously most people are on full chemo treatments.  I have had 15 of the 18 treatments, so just three more to go.  Thankfully they don’t have much in the way of side effects, so I have been back full-time at work since mid-February and have been fine even though we have all been working long hours due to the impact of the lockdown on our clients (I work for a dementia charity).  I normally work in GP-based clinics and out in the community, but none of that is possible so we are all working from home and running our services by Zoom/phone.

I am on bisphosphonates, but a daily oral treatment (ibandronic acid tablets ) rather than Zometa.  This is to continue for another 2.5 years.  The tablets are a bit of a faff to take, as you have to stay upright/cannot eat for an hour after taking them, but I have got used to the routine.  Thankfully you can move around while upright, so I just take the tablet before I have my shower, get dressed and make my breakfast, and the hour passes quickly.  I am on Adcal too, but so far I don’t have any side effects from that.   The oncologist said that she could discharge me from oncology when I had my last three-monthly review with her at the end of July, but as I still had five treatments to go at that point, I asked if I could have a final review with her at the end of October around the time of my final treatment.  After that, she said I should contact the GP/BCN team if there is a problem.

My BCN team asked me in my post-surgery check up back in February if I would be interested in going on a Moving Forward course (run by Breast Cancer Now), and I said that I would.  Obviously this was delayed by COVID, as it was a face-to-face course, but I got en email recently saying that they are now offering an online version.  I have signed up for this, and wondered if anyone else on the thread has done the course or is planning to do it soon?  I think that it focuses on adjusting to finishing treatment, keeping healthy, and watching out for any issues in the future. 

I hope that all on the thread are doing well.  Much love to everyone.

Bkackcat xx

 

 

 

 

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Re: August 2019 Chemo Starters

Hi Anna and everyone else

Great to hear you are doing well.  All good here - discharged from oncology now and just on Supported Self Discharge with the breast team which means I ring if I have any concerns.  I have had two doses of Zometa for my bones, the second was fine and the next is due in January.  Apparently this will continue for 5 years.  Exactly a year ago today I was 5 days post my first FEC and was admitted to hospital with febrile neutropenia so I can honestly say that compared to that I feel a million dollars now!  I am back to all my fitness classes and walking a lot so feel much better.  I had a chest X Ray a couple of weeks ago following my second admission in February with pneumonia and that was fine.  I am feeling cautiously optimistic about the future and trying to put all this behind me.  The only tiny cloud on my horizon is that I think I have kidney stones!!  The GP and I agree that the calcium supplements they tell you to take with Zometa might have caused it so I am in the process of having that investigated.  Its just a general ache that comes and goes - the oncologists were not that interested when I told them.   Anyway, I have stopped the supplements off my own back, my bone density is normal apparently so thats good.  If its not one thing...... 

Hope everyone is well and happy - I have been thinking of you over the last couple of weeks - we were in a very different place a year ago.  Much love xxxx

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Re: August 2019 Chemo Starters

Hi Everyone,

 

😁Just checking how you girls are? As for me, I am doing ok phased return's nearly over on my main job but I also have a tiny WFH gig too. As you know with the pandemic and recession, the construction industry is quiet atm hence hubby's sort of into switching jobs after a year of taking care of me (I feel like it is now my turn😀to look after the family) 

I still have left arm weakness and cording  from surgery and radio which is my fault really as i am too lazy with exercise:( I have physio appointment next Tuesday so fingers and toes crossed they can crack this ropelike 💩. I still have my bad days but in all fairness I just get on with it now. I had been discharged from my Macmillan Counsellor and I'm ok about it. I am still taking my happy pills but just a baby dose. How's things with you ladies?

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Re: August 2019 Chemo Starters

Dear Daisy and everyone

I am so very sorry you are struggling at the moment - it is really horrid when you feel so down and can't seem to get any positivity going.  I don't think I can add much to what the others have said but want to add my support.  I get totally hung up on the whole TN thing - sometimes I feel like its a death sentence and other times I feel fine and don't even think about it much.  Its just our minds as well as our bodies recovering and yours has taken a hit because of having to have the oral chemo which I am sure is a good idea.  You know as well as I, that recovery is two forward and one back and once acknowledged, things get easier.  

What you may find helpful is some mindfulness (mindlessness my husband calls it)!  I was recommended the Head Space app - I am sure there are others - and I am finding it helpful.  Don't get me wrong, I am a bit of a "get a grip" person but it has helped me - I would never have thought it would!  I never used to worry, except about work, and already, after a few sessions it has helped me get my thoughts in some sort of control.

Other news - had my second Zometa this week - so far so good in terms of side effects.  

Have a good weekend all.  much love xxx

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Re: August 2019 Chemo Starters

Hi Annagabanna

Thank you for your reply . I am so sorry to hear that your friends have been rediagnosed. I think its so scarey too and can send your mind into overdrive of what ifs . I never used to suffer from anxiety and was always a positive kind of person but the last 8 months have been a nightmare. I have never taken medication before but im now wondering if it may be an option as each day i just feel so low. I miss my dog so so much and im trying to be strong for my family..im not sleeping well and keep waking in a panic. Its like being stuck in a nightmare. 

I really hope the antidepressants help you . Which ones have you tried? Please keep as focused as you can xxxx

Im sending you a hug and lots of love to your friends too .

Big hug 

Daisy xxxx

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Re: August 2019 Chemo Starters

Hi Daisy D,

So sorry to hear about your furbaby😢 And that you have had to have additional chemo. like Lisa and wolvesgirl I am also TNBC. Hang in there and keep your chin up, and just listen and be kind to your body. I thought I was doing fine until I’ve found out that my friend who dragged me through treatment giving me encouraging words all the time, she was rediagnosed a month ago that and finding out another Lady from the BCNow meetup has caused mental blip. They’re mothers like most of us and straight the indendication that this could be me was hard to fathom. Never took antidepressants not until now 😕

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Re: August 2019 Chemo Starters

Hi Daisy (and everyone else)

Sorry to hear your treatment has been extended, but it WILL come to an end... promise!  I absolutely agree about not Googling things - I did that to begin with, but found advice contradictory and scary.  I will only look at the NHS site, Cancer Research, McMillan and this one - they tell the truth without giving false hope or offering solutions that may or may not be effective.  And I try to only look for answers to specific questions and then close the site before I'm tempted to go looking at other possibilities.  Definitely don't look at American or Australian sites - they have to pay for their treatment there, so seem to me to be looking for cheaper ways of doing things whereas at least we don't have to worry about that in the UK.  

I'm Triple Positive, so had chemo (August - December 2019) then two operations (they didn't get enough margin on the first one) in December/January, and then radiotherapy in March.  Finished radiotherapy on 20 March, then lockdown from the 23rd!  I'm also having 18 infusions of Herceptin (at 3-weekly intervals), but had the first 6 at the same time as chemo (which made the side-effects worse, I'm now told!) and the thought of another 12 after surgery really upset me at the time.  But... I'm having my 16th tomorrow so only 2 more to go after that (finish end of August) and although it's a pain having to go back to the hospital every 3 weeks (twice, as I now have to go for a COVID test 2 days before each infusion) I can see the end coming.  My final (I think) Zoledronic Acid (Zometra) infusion is next January so I'll have been having continuous treatment for 16 months by the time I'm finished, but after the 5 months of chemo I've not felt nearly so bad.  I'll be on Letrozole for at least 5 years, which cause hot flushes, but popping a pill each day isn't much of an inconvenience.

Really, honestly, radiotherapy was a breeze.  A pain going every day (hour's drive each way for me) but it went surprisingly quickly and I had hardly any side effects, just a bit of itchy skin which went away a week or so afterwards.  I haven't had oral chemo but, like others, have heard it's not too bad - the important thing is to get well, and to prevent it coming back.  As I said, IT WILL END.  I'm now feeling positive about the future and quite proud to have got through it all.  You will feel the same... just not yet.  Every day is a step forward.  Do be kind to yourself, rest when you need to (and even when you don't, but just want to get away from everyone for a while sometimes!).  Your body has gone through a lot, but these dark days will soon be over and you'll be able to look back and know what a strong person you can be when you need to.  As others have said, try to think about happy things - even if just a little flower that's opened up for a bee to come and drink to go off and make honey.  Life goes on all around us.

Sorry to have gone on a bit, but always remember you're not alone and we all care about you (even though hugs are out of the question!!).

Do keep us updated, and enjoy the sunshine we've been promised at the weekend.

Julie xx

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Re: August 2019 Chemo Starters

Dear Daisy,

I haven’t suffered from extreme tiredness or breathing difficulties but I have tried to exercise whenever possible. This might simply be doing some light house chores or going out, or doing some light gardening, the little things!

I know, my mind races to unpleasant thoughts too but breathing techniques (such as yoga for me) help me staying routed into the ‘right now, right here’ frame of mind. It’s today - here and now- that helps me by stopping me thinking about what the future might hold.  

And yes, I am still going through loads of hot flushes, oh well, it will end at some point!

Hung on in there, we are here with you.

Hollyleaf

 

 

 

 

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Re: August 2019 Chemo Starters

Thank you so much Holly leaf it means such a lot to have the support

I will try to focus on every day little things Thank you for the advice. 

Its when mind runs ahead of me and then see sad stories on news and then panic.

Just wish i could get rid of breathing issues and extreme tiredness but everyone is saying im expecting to much to soon

I wish you well and i thank you for your love and support . 

Love 

Daisy xxx

 

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Re: August 2019 Chemo Starters

Dear Daisy,

So sorry to hear you’re feeling so low. I think it is important to be kind to ourselves. We all take things differently and react to news in a different way. It is hard to feel positive when you are feeling ill. I try to find all the positive things I can think of, beginning with the very simple daily things. Like a walk, sunshine through the window, my children telling me how beautiful I am, when I think I look 10 years older than before this. 

My strategy on Google has been clear and strict: no googling whatsoever. Just read the booklets I was given and came here when I had a query. Don’t feel alone, we are here to listen to you.

Big hugs,

Hollyleaf

 

 

 

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Re: August 2019 Chemo Starters

Thank you so much everyone for your reply and kind words. Im just finding so hard trying to focus on anything. Just feel so panicky and really dont want to feel this way as i know its upsetting for my children to see me like this but just dont seem to be able to change my mind set. The nurse in me knows that negative thinking doesnt help but really struggling.  Ive asked to be referred for counselling but this is on hold due to covid. I know that i would be better when i can go back to driving ( im 3 weeks post op ) .  

I dont think it helps with the medical menopause as the hot flushes are awful

I have downloaded all the mindfulness app and trying to go out for a walk when able. Im just so tired even when having a shower i have to sit down afterwards.

I have stopped going on to google and other sites as i feel that i wasnt helping myself 

Does all this get better and when  do u start to feel more like yourselves again?. At the moment i cant see the way out.

Thank you all for your support 

Love 

Daisy xxx

 

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Re: August 2019 Chemo Starters

Dear Daisy,

I am so sorry you are having a tough time. As the others said we are here to listen to your journey. I too was very disappointed after two surgeries to hear that the clearance was not quite they wanted and that the best outcome would be a mastectomy. This is a long and difficult journey but we are here together. I have always found this forum so helpful.

Much love and strength,

Hollyleaf

 

 

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Re: August 2019 Chemo Starters

Hi Daisy,

So sorry to hear that you have to have more treatment, but it’s good that your team are being so careful and offering you additional therapies to take account of the one remaining lymph node.  

I’m on a very long treatment journey too, as my tumour was HER2+ and so my total time in active treatment will be 14 months (chemo Aug-November 2019; mastectomy and ANC January 2020; radiotherapy March 2020 and herceptin/perjeta targeted therapy infusions Jan - Oct 2020).   I did have the option to have less treatment, as I had a complete pathological response to chemo and so the radiotherapy was optional, but I feel that my MDT know best and so I have accepted any additional treatment they have offered.  I am getting a bit fed up now of going to the chemo unit for the infusions and being cannulated, but I am pleased to have the chance to have all 18 cycles as some people have had their targeted therapy treatments shortened due to COVID-19.  I have been back at work full-time since February and just try to take the infusions in my stride, as they don’t cause much in terms of side effects apart from hot flushes.

I found that I had no side effects at all from the radiotherapy and that it was nothing more than a minor inconvenience (due to the travelling time).  I hope that it will go smoothly for you too, and that you will not have any side effects from the oral chemo.  Like the targeted therapies, the oral chemo seems for most people to be less harsh than the IV chemo.  

We will get to the end, even though it is a long journey.  The main thing is that we take all the steps to have the best outcome possible, even if it takes a while.  

Take care, and much love.

Blackcat xx

 

 

 

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Re: August 2019 Chemo Starters

Hi everyone

Daisy - so sorry life is hard at the moment but reading what you have said, are they suggesting the radiotherapy and the oral chemo as preventative treatment as they had to leave the node there?  In which case its a good thing that they are being so careful - and if your experience is like Lisa's hopefully it won't be too bad.  Whilst I am TN, I have not had the additional chemo but I did have 20 lots of radiotherapy and I can tell you that compared to the IV chemo it was a walk in the park!  I know you had a horrible time with the chemo - I had two admissions, one by ambulance and had a 900ml pleural effusion so have some understanding of what you have gone through.  You have done so well - and you are nearly there, having completed two huge hurdles - the chemo and the surgery. xx

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Re: August 2019 Chemo Starters

 

Hi Daisy. Yes I’m also triple negative.

They said I wouldn’t need radiotherapy as full mastectomy done and negative for any cancer in lymph nodes. 
I didn’t have many side affects from chemo first time round no, but just because you did with the first lot done automatically think you will with again. Just drink plenty of water, I drink 2 to 3 litres every days and I eat lots of fruit and veg, I try and get out for a walk everyday as it’s find it good for my mental health as well as good exercise for your body, there is days when I’m very tired though so I will rest on those days. My BCN said to me Don’t expect to much of yourself.. you’ve got to remember you’ve already had chemo then an operation and then more chemo! You are going to feel tired and that’s fine just listen to your body and rest.  
Yes I’m perfectly fine driving and have done since about 6 weeks after my op in March.

please just ask if you want to know anything else. Or like Shi said use the nurses on here too, Iv used Shi a few times when Iv been having a wobbly and she always reassures me.

Lisa xxx

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Re: August 2019 Chemo Starters

Hi lisa

Sorry to hear you needed more treatment too. Are you triple negative ,?

Hope you dont mind me asking but did u have radiotherapy too ? . Also i had terrible side effects from chemo requiring 999 as i had a reaction. I was just wondering if you had any side effects. 

Are you able to drive with this chemo? 

Love Daisy xxx

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Re: August 2019 Chemo Starters

Thank you for all your replies.

Love Daisy xxx

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Re: August 2019 Chemo Starters

Daisy ❤️Please do use the nurses on here and the someone like me option too, the positive to hold not is your team are taking all measures to keep you safe and not leaving anything to chance ❤️ Sorry you are facing additional treatments but best to do you’ve already done a well and everyone is here for you, just keep posting ❤️👭❤️💕💕Shi xx

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Re: August 2019 Chemo Starters

Ahhh Daisy, what a rough time you’re having ... it must be so demoralising finding out you have to have more treatment...it’s what none of want to hear BUT you’ve done it once and you can do it again.

Have a couple of days letting yourself be upset and angry then you will be able to pick yourself up and carry on.. we are all stronger than we have ever known when it really matters and you can definatly do it..Sending you lots and lots of hugs 😘

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Re: August 2019 Chemo Starters

 

Morning Ladies 

Daisy I know exactly how you feel, I too thought I was done with chemo to be told after my op that they wanted me to have further chemo (tablet form) I’m now half way through my fifth cycle of six and it’s honestly gone so quick. Iv had very few side effects 🤞🏽 But I can’t speak for everyone as we all react differently to it. One bonus with this chemo is no hair loss so that’s growing still, its a grey/brown fuzz at the minute and I’m not quite sure what I’m going to do with it just yet 😆 
Stay strong you will get there 😘 

 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi 

Had my pathology results today although got margins in breast following Mastectomy and Axillary node clearance. There was one lymph node that couldnt take away due to being so close to vein . So they have recommended radiotherapy and further Chemotherapy which i think may be  oral as is TNBC . Just feel so upset as thought it would be finally coming to the End as i had so many bad reactions to previous chemo and ended up in AE with anaphylaxis.  

Has this happened to anyone else ? 

Life feels so hard at moment as  our beloved dog  passed away last week. So was hoping for some good news today . Just dont know how to get through all this anymore .

Love

DAISY XXXX

 

 

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Re: August 2019 Chemo Starters

Hi Hollyleaf

It seems to vary tremendously but if it is any consolation I am not being routinely followed up by oncology or surgery.  I am on a thing called Supported Self Care - effectively its up to me to contact them if there is a problem or if I need to ask a question.  In addition I will have an annual mammogram and as I am having Zometa I will have 6 monthly bloods and a telephone call with the oncology nurses to make sure I am tolerating it OK.   As I understand it, its decided at MDT so I take comfort in thinking that maybe its because they think I should be OK.  I don't know if thats right but it suits me as I hate going near the place.  Like you, I had a bone density scan but I don't know the results - it was just before lockdown so I am going to ask when I go for the infusion in a couple of weeks.  I am taking chewable calcium as advised when I had my first infusion 6 months ago.   Anyway good to hear you are doing well. xxx

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Re: August 2019 Chemo Starters

Dear all,

An update from me. I finished my radiotherapy on 11th June, about a month ago and have been getting on well, although I have slowed down on exercise and mustn’t get complacent!

Anyway, I also had a bone scan and that showed that my bone density is low, so I am now on Calcium and vitamin D tablets. Today I spoke with my oncologist and now that I am reading your thread, I am a bit surprised as he said he will see me in 2 years. I mean, this could be because I have just turned 46 last month and I am not down to yearly scans, however it does surprise me. I didn’t have complete response to chemotherapy but he said he was happy with the way the cancer responded to treatment and that after the two surgeries I had, I have been cancer free. He said I should get in touch with the surgeon in about three months time to discuss a further incision but that is only because the clear margin was of 0.5 rather than 1 mm. So all in all, he is happy and doesn’t need to see me for 2 years unless I have a problem. That now sounds a little worrying compared to the care you will be given.....

 

Huge hugs to you all 

Hollyleaf

 

 

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Re: August 2019 Chemo Starters

Hi everyone

Thanks for the replies - it certainly is a relief that the mammogram was clear - I think it will always be an anxious time for us when we have to have some sort of investigation.  I have my second  six monthly Zometa infusion in a couple of weeks which means I need bloods and even that is making me anxious in case something shows up!  Just a fact of life now for a wimp like me.  

Anna - well done on the income generation - it is hard.  Spottycotty - I would not be impressed with the phone follow up either.  When I went for my mammo they told me that they had caught up quickly as they were not calling in routine three yearly scans or over 70 year olds who were having annual scans following treatment.  So hopefully your local trust will be in that position soon.  It made me think though - my cancer was caught on routine screening, I didn't have a clue - there must be women out there getting missed now because of Covid.  Its a sobering thought.  However, great news about your elbow - benign is all you need to hear!

Daisy - I have been thinking of you and wondering how you are post op.  I think I read on another thread that your dog had died - so sorry to hear that.  Life is, at times, just rubbish.  

Well, onwards and upwards - I have a hair appointment on Thursday and will cease to look like a 1970s disco diva and hopefully more like myself!  Cant wait.

Much love to you all dear friends xxx

 

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Re: August 2019 Chemo Starters

Hey All!

Sorry it took ages for me to reply,  I am trying out different avenues to bringing more cash in the household as hubby works in the construction industry which has been pants lately especially for self- employed people like him. And with my shielding, I can only get a flat wage and Wolvesgirl will know that unless you work overtime NHS pay isn't that awesome especially when you have a daughter who's attending Uni and a teenage boys who seems inhale the fridge in one go lol! 

My mate and I decided to start up an ebay shop, also selling Scentsy and the most recent addition to my WFH gig is a 5 day contract as a call centre agent lol! Anyway Lisaloo, I know a few ladies from my facebook group who had residual cancer and had to have chemo post rads and they're doing well. One lady had residual cancer post cancer treatment like 1999 and she is way over remission and is just getting on with her life! And yes she's TNBC Stage 3 during diagnosis and back then there was less treatments available.

Wolvegirl well done on your Mammo! So pleased for you

JulieMe not long now:)

SpottyCotty I hope they Breast Unit will be able to accommodate you real soon

P.S. Had a bone scan midJune and it was all clear too.

Also has anyone watched the BBC Panorama last night?

 

Anna x

 

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Re: August 2019 Chemo Starters

Hi everyone...

Wolvesgirl, brilliant news!! You must feel so relieved...it’s awful waiting for any results isn’t it!!

i have my yearly appointment next Tuesday, it would’ve been my mammogram but they are doing it over the phone 😨, I’ve rang and complained and they’ve said I’ll get that at a later date as they are playing catch up due to Covid .. not impressed with that at all!!

Ive got my MRI results for my elbow, it’s fibrous dysplasia so a benign condition but they didn’t send any other info other than a letter saying if the pain continues to see my GP 🤨

Never mind though, it’s benign and that’s the main thing isn’t it...

Blackcat, I was surprised to read you are still having treatment, it must feel like it’s going on for so long...you’ll get there though, how’s your hair doing???

Hope everyone else is ok, 

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Re: August 2019 Chemo Starters

 

Good morning wolvesgirl and all other ladies 

 

Wolvesgirl brilliant news on your scan! I bet the wait for the results was horrible 😫 and Blackcat glad your getting there with your treatment and not having side effects 😄👍🏼 
hope everyone is safe and well 😘 

 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl

So pleased to hear your good news. 

Love Daisy xxxx

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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