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December 2020 Chemo Starters

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp 

Your last chemo, I am so pleased for you! You did it and yes a glass of fizz and a cake when you are over the fatigue seems perfect, find a little bell so you can ring it when you have your fizz 🙂😘

I have 2 cycles of paclitaxel left but as I am having it weekly its 7 weeks, however weekly paclitaxel is kinder than EC, thankfully.

They can give paclitaxel 3 weekly but oncologist decided to give weekly as its tolerated better. I have herceptin etc three weekly. As you say, I feel like running away from chemo but I know I must suck it up and get on with it!

This forum has helped no end, knowing I'm not alone feeling like this is such a great support

Sending virtual hugs to you all x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 

It's the little things that keep us going, treat yourself to that coffee, it will be well deserved x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone. Well, I had a quick look today when I went for bloods & definitely no sign of a bell in my unit. So it will be a virtual one for me tomorrow!! I have to celebrate in some way to mark the end of chemo but think I will have to wait for the tiredness to pass for the last time. Then maybe a couple of glasses of fizz!! Or if not feeling ready for that a yummy cake. Or perhaps both - I was pleased today that I have only put on 1kg since the start of chemo. 
Good luck @PaulineS27 with tomorrow’s treatment. How many more weeks do you have left? And hope your bloods are ok @donkeywoman  Fingers crossed for the Hb level🤞 And yes we definitely do need a few treats along the way! I have had a few takeaway coffees recently & have thoroughly enjoyed them. They seem even more of a treat at the moment. 
I told the nurse today that I may not make it in tomorrow but she assured me I would as I know ‘it is the right thing’ & she is right. I gave to say that it always seems easier when you actually get to the hospital. And tonight I am feeling less like running away. Think I am suddenly surprised that it is the last one tomorrow - it seems a bit surreal!! 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

All the best for treatment tomorrow @PaulineS27 and hope yours went okay @grannyp .

I've not seen the bell at my unit, but apparently there is one. I think the idea is to ring it at the end of chemo, isn't it? Even if you have more treatment to come... 

Blood test etc tomorrow - just as the storm arrives. I'm thinking of treating myself to a nice coffee after bloods, weigh in etc. Need to find treats along the way don't we... xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi and all,

I keep looking at the bell and thinking I'm going to ring that bell!! I have used it as motivation since my 1st chemo session. Actually when do you ring the bell, when you have your last chemo session? I have an operation to follow 🤔 

Went for a walk in the sunshine today, chemo tomorrow so wanted to make the most of an Okish day 🙂

I keep counting down the weeks............

Hope you are all doing ok x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman @PaulineS27 @Woodybird @@and everyone... 

thanks ! I’d take my own bell if they not got one 🤣🙌 

it’s hard at this stage as it’s cumulative... we r all doing so so well . Deep breaths and exhale ! 
hope mouth is ok ? 
hope everyone keeps moving a little n gets to finish line soon xxxxx 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all,

@grannyp will think of you today (and tomorrow of course) - hope the blood test goes smoothly. So sorry to hear you feel so low... I think we can all empathise - we are just exhausted mentally and physically, aren't we. Let's just hope that as you leave the unit tomorrow you do have some sense of relief and we will be virtually ringing the virtual bell with you! Hope you have the lovely weather we have today and get some deep, deep breaths in. Selfishly, I'm quite glad the weather is changing. Even though chemo not til Friday, I find that once I start with blood test, weigh, check in etc, I just feel that it is all starting by the Wednesday, so rain and high winds may kind of suit my mood. 

@PaulineS27 - I'm so with you on the swings from yep, this will be okay, to no, cannot keep doing it any longer... Guess we just have to roll with the waves. @higgi love your energy, even when you must have to dig deep for it sometimes. I'm with you on the bell - I said to my neighbour (who used to be an oncology inpatient pharmacist) that I wondered if it was insensitive to do - but she said it could be a lift for people early in the chemo bit, to know that people do get to the end... @Woodybird I really for you with your sore mouth - there is just no escape from that discomfort is there. Hope the dentist can help... 

I need to get back outside, it lifts my heart and I need to keep my mind off impending chemo... . Hope all your Tuesdays are as good as they can be, and if they aren't, then I hope you can find some comfort somewhere xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Hope you are all doing ok. @higgi Just love your enthusiasm about the end of your chemo. You go ring that bell loud & long next week👏 I will just have to ring one in my head as I am pretty sure there isn’t one at my unit. Perhaps I will find one on my phone! 
Off for bloods, covid test etc in a little while. Was hoping to be ‘looking forward’ to the last treatment, as my onco assured me I would. But I can honest say that this morning I feel worse than I have throughout this whole process. Probably just that my body & mind has now had as much as it can take, as I said in my post yesterday. I do know it is only one last push & I know that is what the nurse will tell me. But my mind is seemingly not operating in its usual logical way at the moment! Just another unexpected & strange twist along the way. 
Oh, well, let’s do this & go & see if they can find a vein that will produce blood & then check how much weight I have gained over the last two weeks!! 
Have a good day everyone! x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 

What a trooper you are working through it all. Sorry to hear about your break up, it must of been hard but you have been string and got through this!

Yes house work and kids are exhausting, mind you they went back to school today so I had a little down time 🙂

I have 7 weeks of. chemo left too followed by an op, some days I feel like I have hot this other I think oh no not another 7 weeks 🤣

Sending you all a hug x

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

Love your enthusiasm @higgi 🥰 I have many notes to self about drinking more, still need to drink more 🤣

Thanks for all your kind wishes everyone. However, mouth has not improved and in fact I have a dentist appointment tomorrow just to double check that nothing else is going on with my gum/teeth/jaw. I was hoping to have it all cleared up before chemo again on wed. 

To top it all off, car wouldn't start today when I tried to go to the PICC clinic for flush and bloods. Flat battery! Obvs not using it enough 🤣 All sorted now but for early appointment tomorrow now to catch up.

All the best to everyone with treatment this week, particularly those of you who are finishing 🎉 and to everyone else too ❤️

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone! Sounds like you all nearly through chemo ... well done 👍 I’ve got my last week on Wednesday.. yippee 🙌.. I did think about the bell and wondered about others who may b in late stages of cancer and felt the same ... as in ... gosh is it ok to celebrate... but then I thought I’m celebrating finishing this lot of chemo that’s all ... as we then have to just wait n see ... n we just hope n pray we don’t need more later down the line . 
 So I’m really excited about the bell and particularly because I’m now allowed have it back at Bolton (my local town) in the mobile unit and so that’ll just make it so special . Plus I won’t b there for ever n  a day like at Christie’s (they always run 2 hours late ) . 
excited too as see my surgeon Thursday to confirm type of recon and a date for mastectomy n total axillary clearance! Thinking I’ll go implant over muscle .. 

got the bras in ready ... good to go 🤣🙌

then I want know when I can start radio ... how soon after ! 

Ive never had a problem with losing weight n put some on ... probs a good thing as I am tiny anyway ! . I’ve found I love feta cheese n halloumi cheese dishes .. also crave melon !! 
bone pain same in sitting only . Still don’t sleep . 
nearly forgot ... had 1st water infection last Tuesday ... 3 days anti biotics... n note to self DRINK MORE !!! 

I don’t ever risk going out on roads on bike as don’t want an accident that cud affect my treatment... so stick to trainer (indoor bike ) still do loads exercise. Even started yoga 3 x week ! It’s torture 🤣

nails all ok n still got eyebrows n lashes .. but thinner !!! No neuropathy as yet 🙏

hope u all well and b proud you have smashed this !!! Whoop whoop !!! Xxxx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

HI @donkeywoman and everyone else. Yes, the horrible chemo is definitely responsible for the low moods that we all seem to be suffering. I think our bodies and minds just get completely worn down by the whole thing. We generally start off very apprehensive or terrified but with a positive attitude that we will get through it - one day at a time etc. Even if we don't suffer bad side effects, our bodies are taking a battering and three months later are letting us know that enough is enough. And the emotional rollercoaster is relentless. Personally, I know that in two weeks' time I should be feeling as I do today (weary and lacking in energy but better than I have been and otherwise not too bad) and that I then won't have to suffer another slump, so should start to feel better going forward. But I am in reality unable to contemplate being pumped full of poison again this week. My body and mind have just had enough!! And your husband is completely right about how much we have gone through in such a relatively short timescale. 

I was actually thinking earlier when out on my morning dog walk that since August 21 last year - the day I received the letter recalling me after my routine mammogram - breast cancer and whether I will survive this have occupied my mind virtually every waking minute. Yes, I have thought, talked and written about many other things but it has always been there, sometimes to the complete exclusion of everything else and sometimes lurking just behind other thoughts. Everything comes back to that one topic. How do we move on from that? I really don't know, although I do know that in the times when I have been able to do more and also when I have had to engage with others' problems/plans/worries I have been able to push it further back in my mind. I am hopeful that once the chemo fatigue and fog lifts and also when we can all live more freely I will be able to deal with it as part of my life rather than the overriding element. I want to be able to live each day and enjoy everything that life has to offer - have all been given a sharp reminder that life is precious and that none of us know what is around the corner. To do that I have to be able to somehow override those constant thoughts. I am sure that some of you can identify with this. 

Yes, my last treatment is on Wednesday. I am pretty certain that my unit, which is very small, doesn't have a bell. I also know that they have a large number of patients who are on long-term and life long treatment, so celebrating the final treatment may seem a little insensitive. Having said that, my day is so long that on the last two occasions there have only been the nurses there when I have finished! So if I did want to celebrate I wouldn't be upsetting anyone!

Pleased to hear that you are feeling better this week @donkeywoman. Yes, just try to enjoy these 'good' days before Friday. And after that you only have one left, I believe. We can get through these last treatments and fatigued days - it will be hard but we have got this far! 

Hope everyone has a good week and that all appointments and treatments go well x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all,

Have been re-reading recent messages and the theme is coming through strongly about fatigue and low mood. Obviously I am sorry that anyone is feeling this, but perhaps there is a bit of comfort that if so many of us are feeling it, it really is about the chemo and not so much us, if you see what I mean. Hubby and I were chatting about it last night (it's amazing how little we have talked about it really, neither of us really wanting to) and he was pointing out how much has happened to me in just a few months, with no warning. Once you actually list it all, with the timescales, it is hardly surprising that there is a degree of shock and exhaustion, is it? 

@Shine13 wow, to deal with this, just after the end of a long relationship, what a hideous double whammy... Do you have folk around to support you? I feel very lucky to have my husband and mother in law here to help out in lots of ways. But don't get me wrong, there are times when I just wish I lived alone! Or at least had a bit of time here - covid means that we are all here, all of the time... But really, I know I am lucky and couldn't possibly manage the animals on my own. I hope you are managing okay - I take my hat off to you for working all through, though glad they are being supportive. Hope the diarrhoea is settling - does your team have any ideas? I find loperamide works straight away, so haven't had to try anything else yet...

I'm so lucky, 6 months on full pay. Then I will take a bit of holiday so that I can go back gently. But have provisionally agreed 11th May, about 6 weeks after last chemo. Might that be a bit ambitious? oh well, I will just see nearer the time.

@grannyp your busy day, sounded great, but shame you had to 'pay' for it the next day. Hope today is better? Is your treatment on Wednesday? Sorry, 50 something chemo brain can't retain much for any length of time... But it's your last, isn't it? Deep breaths, are you going to ring the bell? Mine is Friday, but I need to stop thinking about it and enjoy these good days. I've now been up for the animals for 3 mornings which feels great and definitely more 'me'. I'm not good at living for the moment, but am perhaps very slowly learning a bit.

How is everyone else today? @Woodybird hope your mouth is recovering? And @Karden wonder how this week is starting for you - you've had a bit of a rollercoaster, haven't you? 

And everybody, hope Monday is treating you kindly xx

@Karden how is

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman @grannyp I have days where the treatment seems to go on for ever and life won 't be the same but thankfully I am having a good day today.  My better days  are more than the bad days so hopefully it stays that way. What a nightmare if you go through also this for it to come back but got accept a year of Kadcycla and 5 years of hormones is going to really reduce the risk.  All the years saving for retirement gonna make dam sure I collect.

When I started this journey in December I did nt how I was going to get through 5 months of chemo during lock down and to make matters worse I had split up with my partner of 10 years 3 weeks before I was diagnosed,  talk about rotten luck.  I think he would have been useless anyway. 

Now I only have 7 weeks to go and it has not been as bad as I thought.  Definately really tired, have reduced my  works hours. @Karden  I am holding of going of sick as only get a month on full pay and worried about mortgage etc.  A friend who is 6 months a head in the breast cancer story says chemo was tiring but when she got to surgery followed by radiotherapy she was really exhausted.  So will I keep going till I really can t work. Work are been very supportive.  Work has helped pass the time because I live alone and lock down has made this a very strange time. It is only the last 2 weeks I have really got the fatigue etc.

So feeling tired and still lots of diarrhoea, I  am losing a kg a week.  Any tips I am taking loperamide, diaoralyte and a blandish diet. It is slightly better but can‘t seem to get rid of it.

Pauline I don 't why you are worried abut exercising.  House works  and running after kids is a work out just probably boring.  I am trying to do a bit of yoga a day that really helps and I always get out for a walk or bike ride at the weekends.

Good luck with next week in whatever it brings.  Sounds like everyone is doing well considering what we are all going through.  Sod shielding I ll be going out in April. @Woodybird use dissolved aspirin as a mouth wash but what ever you do don 't swallow.

XX

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman  Yes exhaustion & just being completely fed up of this whole thing is probably the driving force behind us being weepy & emotional. We have to start looking forward with some things but it is a whole new scary world. Having a start date for work gives you something to work towards but you must be wondering what it will all be like as so much has happened to you. 
I don’t know if I will ever be back to the ‘old me’  I have also tried to explain that to my husband but I do understand why they don’t get it. I don’t actually like the current me & would definitely like to be back how I was! I do wonder if it will all be a little easier for us when lockdown eases & we can actually do some of the things we used to do. Let’s hope!! 
I am tired again today after a very busy day yesterday. Had a lovely morning out & about & then put in plants I had bought at the market, cleared out a couple of cupboards, did some laundry & made dinner. I did feel like ‘me’ for most of the day but today is a completely different story!! 
Oh well, one day at a time & treatments for both of us this week. 
Hope everyone is having a good weekend & good luck for another week x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all, 

Just getting tucked up in bed and catching up with the threads. @Karden I am with you on the fed up and weepy. It seems to be a bit of a theme at the moment, doesn't it? I think (for me, can't talk for anyone else) that mainly I'm just exhausted... and also, as @grannyp says, starting to think to the future and realising that it isn't all over yet... Although I've had surgery and don't need radio, I still have herceptin injections til Christmas and whatever anti-hormone meds for years. And I feel so unlike myself at the moment, I wonder if I will get back to being me any time soon? I was trying to explain this to my husband earlier and, lovely as he was, I wonder if he could understand it at all... Still, I've agreed a start date back to work - knowing that it is dependant on all being okay. This felt positive and I am lucky to have a lot of support there which means I know I can work flexibly if needed... 

@Woodybird hope your ulcers are going. @grannyp hope you had a good, carefree (remember that??) time at the food market and by the sea. @Karden hope today has felt a little better. And everyone, hope you are feeling okay. I've had a nice day today, in spite of it being chilly. Plenty of time outside and the best appetite for a while. And a really good cry this morning helped too, I think . Night all x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden  Yes the mood swings are unreal at times. Reminiscent of being a teenager😂 And ‘fed up of the whole experience’ sums up my current mood perfectly. 
I have definitely been having similar thoughts to you about life going forward the last few days. Think it may be that our focus over the last few weeks/months has been solely on getting through the chemo & now we have to move on from that. I hate the idea of now being tied into the hospital/medical system & of making unwanted changes to my life. I totally understand that there are thousands of people in this situation & many in a much worse situation but we all have to come to terms with what has happened to our own life. I have radiotherapy in April & the start of hormone tablets & I will also be having bisphosphonate infusions for 3 years. I agree with you that everyone thinks that once radio is done I am free to get on with my life - not quite true, is it?? I have 4 weeks between chemo & radio & worked out that when radio finishes I then have 4 weeks until my 6 month check with my surgeon. And then not long until my first annual mammogram. Like everyone, I am so grateful for all the treatment & am pleased to be getting regular ongoing checkups but it does throw a huge shadow over life. 
I am sure we will adapt & get used to it but at this stage it is quite overwhelming.  I did have to gently explain to a family member the other day that I would not be ‘returning to normal’ in a few weeks but would be starting to rebuild my life. 
You are definitely not moaning - just expressing what many of us are feeling now that we have to look beyond the ‘one day at a time’ of chemo. You have certainly exactly mirrored my thoughts. 
Anyway, I have put a bit of slap on & am off to the local food market & a walk along the seafront with my daughter-in-law & granddaughter. Should raise the spirits for a while! x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp the weariness and lethargy is so debilitating, isn't it. I hope you start to feel better soon, especially following your last chemo which will soon be completed. The mood swings are familiar to me too.

After receiving the fantastic biopsy results a few days ago I felt really positive about my whole situation but yesterday I felt a bit weepy and just fed up of the whole experience.

I was thinking about the upcoming surgery and radiotherapy, then the ongoing Herceptin until December and then bisphosphonates after that. It made me think about the possible side-effects and realise that I'm not going to be the same as I was before all this started. Friends seem to think that it's all completed after the radiotherapy and I will be back to my normal life. And there's the hair of course, it's going to take a long time to get to a decent length and a style that I'm happy with.

I am so thankful for the treatment I have had and will continue to have but it's a real life changer in so many ways, not least due to the continued hospital appointments for some time to come.

I have had visits on Monday, Tuesday and Thursday this week and again today for pre-op assessment tests. I already have another MUGA scan and appointments with my oncologist and surgeon lined up before the actual surgery on 26th March. No wonder we feel exhausted!

Sorry for moaning on but I just wanted to offload, I'll feel much better soon.

Hope everyone has a decent weekend. xx

 

 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Woodybird I'm sorry you have had mouth ulcers, they are so painful and often underestimated aren't they? I know you said you're over the worst but if needed, I got a prescription from my oncologist for benzydamine and also lidocaine mouthwashes. The Difflam alone wasn't doing anything although I used it during the next cycle as a prevention measure and it helped as I had only 2 ulcers rather than 15.

Hope you are feeling better now. x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning all

Good to read updates from so many of you. And fantastic news with your biopsy results @Karden. You must be so pleased & now looking forward to getting surgery over & done with. 
We all seem to be hanging on one way or another & getting through a very tough time that has only been exacerbated by the pandemic/lockdown. Huge respect for those of you who have been home schooling.  
Everyone has been experiencing side effects of one sort or another but somehow we are all getting towards the end & that never seemed possible back in December. I feel very very weary & uninterested in most things at the moment & I am sure that many of you have that same weariness. Enough is enough really & although my side effects haven’t been bad I feel that my body is now struggling. My positive mood from the beginning of this week disappeared as the tiredness & lack of energy refused to go away this time!
 I only have one treatment left in 4 days’ time & there is a mixture of wanting to get it over & done with & my usual default position of wanting to run away!! 
It isn’t the treatment itself - although the thought of another long day, especially  the cold cap, isn’t appealing! - but I am just fed up of the tiredness & lack of energy. 
 @JuliaS Pleased to hear your hair has hung on. It sounds similar to how mine was before I took the plunge & had the Intralace system. The stretchy hair bands do a great job covering up the thinning/bald patches. I see that like me you now only have one session left. Hope it goes well & good luck. 
Hope everyone has a good weekend & good luck with next week’s treatments & appointments. x

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

Thanks @donkeywoman. I have difflam and also using salt/salt water - and paracetamol! Seem to be over the worst, just feeling a bit hopeless, might watch a comedy to cheer myself up 😃

Glad you're feeling good. Bet the hens love the attention, enjoy x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all, 

@Woodybird - ouch, what a pain about your ulcers - do you have anything for them? I think @Karden said that the difflam mouthwash helped a bit? It is very frustrating isn't it, when you think you are getting to the better bit and then something goes wrong. Ugh. Not surprising you feel overwhelmed... I'm always surprised how quickly I can go from feeling quite calm and okay to feeling that it is all too much. And that can even be when I don't have many symptoms. Tough times, let's not deny it.

My day feels quite good so far (don't like to tempt fate). I wish it was a bit milder, I could go and tidy up a bit of garden. I've been out, but don't think I can face snipping at the moment. Will go and see the hens instead. 

How is everyone else today? xx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@Karden @dipitdee Fantastic news ladies, well done 🎉

Managed to get out in the garden over the lovely weekend & Monday. Only about an hour at a time but it was liberating. But maybe even that was too much, or maybe just coincidence, as Tuesday woke up with terrific pain in my mouth. Thought it was toothache to start with but soon realised it was gum related, which eventually broke into ulcers. This is supposed to be my "good" week, the week to 10 days before the next chemo, so not impressed! Feeling a bit overwhelmed this morning. I'm sure it's just the stage I'm at, as @grannyp suggested.

It's been lovely to catch up with all your news and comments though (I haven't been on here since last week, thank you @donkeywoman for the shoutouts).

Hope return to school goes well for all those with children.

Enjoy the rest of the week everyone. X

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@dipitdee I noticed the time you posted your message, hope you managed to get back to sleep. 

For me, a mastectomy hasn't been offered, only a lumpectomy. The tumour was 2.5cm at diagnosis. I have an appointment with the surgeon on 15th March so I will find out more. My thoughts were that a lumpectomy is a preferred option if possible as its less invasive and the breast will be conserved. Of course, if it's decided that a mastectomy would give me the best prognosis for the future then I would agree to that.

I'm looking forward to hearing when everyone else reaches the end of Chemo, it's getting nearer as each day/week/cycle goes by.

This forum and all you lovely ladies are really helping me, Knowing that others are going through it all at the same time has made it easier to cope with.

Sending hugs to you all 🤗🤗🤗

 

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@Karden that’s fantastic news! Great that you don’t have to endure any more chemo! Yeay!! Definitely sounds like treatment plan is similar. Can I ask, did they only offer you a lumpectomy or did you get the option of a full mastectomy? When I was originally diagnosed the lump was so borderline for adjuvant therapy they offered me surgery first. My options then were lumpectomy or mastectomy with implant or flap reconstruction. I was hoping I’d still be at least offered mastectomy as an option. 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman wasnt it amazing news about @Karden 🙂 really made me smile.

Oh yes so looking forward to a little rest and no home schooling 🙂 slightly apprehensive as I think my 9 year old daughter may worry about me while she is at school but I am going to give her positive vibes and get her teacher to keep a close eye on her.

@donkeywoman here is to the end of chemo and feeling a little brighter, not long now x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

@Karden that is brilliant news!🥳💕 I'm so pleased for you. Good riddance to chemo (and thanks for what it's done of course). Get surgery out of the way and hopefully the injections won't be too bad at all (that's what I've convinced myself anyway). Big relief. 

@PaulineS27 I take my hat off to you for homeschooling all thru chemo. I can't imagine how you could possibly fit in chemo as well. Hopefully you can have the odd bit of rest next week.

Thanks @Karden , I'm going to bed smiling now xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

This is amazing news and has really made me smile.

I have been lurking in the background and reading all of the post, which have kept me going.

I have another 7 weekly paclitaxel which has been kinder than EC but I think it is all cumulative so I have been feeling so drained, not helped by having MS and epilepsy I am sure 😂 although I am blessed to have tolerated chemo, oh and 2 children to home school could help with the fatigue 😉 looking forward to a return to normality on 8th March so the children can get into a routine that doesn't include my hospital trips! 

You are all doing so well and an inspiration, I so need to exercise but I find the housework, cooking, washing and picking up never ending toys leaves me exhausted but I hope to start doing a little something 

Sending love to you all 

 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

I have received the best news today! 6 core samples were taken for the biopsy and all are clear of any live cancer cells. The remaining lump is residual dead tissue which is why it shows up on the MRI as not having reduced by more than 3-4 millimetres. No more Chemo!

Next step is the lumpectomy and lymph node removal on 26th March. I will have Herceptin only tomorrow by IV and again on 25th March. If no lymph nodes involved following surgery I will have Herceptin (Trastuzamab) only by injection every 3 weeks until December. If anything found in lymph nodes I will have Herceptin and Pertuzamab by injection. It also means that my PICC line will come out soon.

@dipitdee  so pleased that 1 tumour has reduced and the small one has gone. You are on a similar treatment plan to me so I'm hoping you have a good result too.

@donkeywoman Has the fatigue improved at all? It's more debilitating than you would expect and can be very frustrating.

@Shine13 The Paclitaxel sounds tough, are you able to take any sick leave to help you get through it?

@JuliaS How are the achey, sore wrists and ankles? Have you tried a wheat bag or hot water bottle? The tummy problems are a real nuisance, I suffered with diarrhoea until last week and now struggling with constipation - we can't win, can we? Good news that you will have 1 week of radiotherapy rather than 3.

Hope you have all had a reasonable day. xx

 

 

 

 

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @JuliaS , lovely to catch up with you 😊. Oh, that pond water taste, dodgy guts and general aches, all sounds so familiar (i'm on 4 of 6 Docetaxels)... Thanks for the tonic water tip, I might try that one. I find things just change - I really liked lemon barley water for a while but now it is revolting! And I'm so weird about food... Well done on cooking for your nephew - I keep planning to cook, but then can't face it and just have another cup a soup... Our nephew lived with us for a while - but I think we mainly left him to cook for himself! It's good that your radiotherapy is shortened - we are all starting to see the light appearing, aren't we? You are so right about how far away March seemed in December and here we are. As my very supportive friend always ends her calls - on we go. xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone, 

@dipitdee that is great news about the reduction in tumours. Makes chemo a but more bearable,  doesn't it? (I had surgery first,  so chemo is meant to be the cleaning up bit). I'm having Tratsuzomab injections as my SNB was ok. I'm banking on being able to get on with life once this chemo is over! Your little girl will be so happy to see her friends and get socialising again 💕

@Shine13 good to hear your news, but it is so annoying when messages disappear... it's a bit weird when we are all at different points in treatment. But you're right,  we are all over halfway and starting to see over the top of that hill. Sorry you are now experiencing the miserable mix of fatigue and queasiness, my main symptoms too. It's just debilitating... But you always sound so positive and philosophical,  hope that helps you through a bit? When I answered the ED dr's questions the other day, I was struck by just how much of your body and functions chemo effects. No wonder we are knackered!

I'm feeling pretty good this morning,  still planning to take it slowly. Hope everyone has had some sleep or at least rest overnight. @grannyp how are you doing? And @Karden hope your week is manageable,  with appointments and waiting for results 

Hugs all round 🤗

JuliaS
Member

Re: HiRe: December 2020 Chemo Starters

Hello 

Prompted by @donkeywoman and her kind query a very belated update. First of all I haven’t posted for ages but have been reading the posts which have given me plenty moral support and encouragement so thank you to you all. 
I have had five cycles out of six. EC was OK but Docataxel/Taxomere has been more of a beast! 
From day  3 to day 11 very achy with especially sore ankles and wrists although better prepared this time with Ibuprofen Max, Clarityn which I read helped although my oncologist hadn’t heard that and wheat bags.

Had a few tummy troubles too and a very oily / greasy taste in my mouth ( yes my tongue feels too big too! ) 

My 22 year old nephew lives with us and is a builder so comes home ravenous. It is an incentive to cook every night but everything tastes like soggy cardboard! 
I made some ice lollies yesterday with orange juice and had one just before eating and it definitely helped. 
Tonic water also seems to help. I think I got a bit dehydrated after the first Docataxel cycle as tea and water/ squash tasted like pond water but tonic water goes down well. 
Shielding has been a challenge and I miss my walks with a friend which I was able to do when recovering from surgeries in the Autumn but it is not for much longer. 
Had some good news regarding radiotherapy which comes next. Having initially been told I would have three weeks of treatment it has been changed to one week so could be completed by the end of April😀

As for my hair @grannyp I have persevered with the Cold Cap and have thinned out all over and have a bald patch on the top of my head and a receding forehead. I have bought some hair bands which hide the bald patch. I have gone back to the hair style I had when I was eight! 
March seemed a long way off when we started this at the beginning of December and yet here we are so well done everyone! 
Xxx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman my visit to oncologist was much more positive than last time. One tumour has reduced and my little one has gone completely. Since it’s been effective I’ve got 2 more hits on docetaxel/trastuzumab/pertuzumab mix then I’ll go for surgery 4-6 weeks after my last chemo on 25th March. After that I’ve got more targeted treatments which I’ve been told will either be: Trastuzumab injections if sentinel biopsy shows lymph nodes not affected, Trastuzumab & Pertuzumab injections if lymph node involvement, or a different chemotherapy if there is still some tumour there. Whatever happens there will still be treatment in some form for at least the next year, but from what I’ve read everything else is much more tolerable than this. @Shine13 it definitely seems like the targeted therapies are the ones that do the magic, but it is great news that you had some effect from the EC. I like to think of it as mopping up any stray single precancerous cells that might be lurking!

@Karden realised it biopsy results and not MRI results you’re waiting for, hope it has all gone well x

@donkeywoman it will be brilliant getting little one back to nursery! She’s so looking forward to seeing her friends again and she definitely needs the socialisation! She’s an only child and in the last few weeks there’s been a stream of imaginary friends in our house! So far we’ve had Rex, Gex, Princess Leia and Sally the horse! I’m also looking forward to Mon, Tue and Wed spent just recovering on sofa next week! 

Hope the fatigue ends soon and you start to feel normal again! 
Take care everyone xx

 

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

 

Hi @donkeywoman @dipitdee @Karden @grannyp and everyone

That is twice now I have posted a message and it disappears into cyberspace very annoying.  Well having it had it very easy so far -  fatigue finally hit me this week. I understand what everyone is talking about now, it is exhausting and miserable with a queasy stomach and no appetite.  I had   number 4 of 12 weekly Paclitaxel on Friday.  I  am trying to work as I only get 4 weeks paid leave but don ‘t think I’ll last much longer, the brain is nt really working well I can’t concentrate on anything.  Great some of you are finishing soon, I do think the weekly regime is a bit easier in terms of toxicity,  but two more  months  seems a long time but by the end should be out of lockdown.

My tumour was a moderate response with EC but  good response with the lymph node so some good news.  They are hoping for more response with targeted therapy but as I am triple positive  I will be left with fair residual tumour and hence the 1year of targeted therapy post op with the hormone stuff. 

It will be interesting to hear if anyone has a complete response as it seems rare.  Well keep going those on the homeward stretch the end is in sight.  Some of us will have to dig in a bit longer but we should all be more than halfway.

xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

@dipitdee all the best for the oncologist and results today - let us know how it went once you feel like it.

I'm guessing it will be nice for your little one to get back to nursery? Just the start of a sense of normality - even if it all feels a bit weird and fragile... xx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

😂 @donkeywoman definitely no more exciting life than anyone else on here! Although I am counting down the days until little one goes back to nursery next week. A bit nervous about it as we’ve been lucky enough to be in our own wee bubble since Jan but since I’ve only got 2 treatments left it’s not long that we need to be careful for. Sorry to hear about your trip to A&E, hope you’re managing to take it a bit easier.

I’ve got oncologist today too @Karden and results of MRI last week. Hoping targeted chemo of docetaxel/herceptin/perjeta has done something this time as there was no change after EC. Been really trying to prepare myself for all the surgical options likely to come my way sooner if the chemo hasn’t been effective though. Hope your MRI results are positive, will be thinking of you today.

Definitely feeling more positive after beautiful weather at the weekend and generally feeling pretty good in last week before next round. Have been more in the frame of mind to look to the future. Have been looking at dates and if all goes to plan with chemo, surgery and COVID then I’ll be all done and recovered for end of lockdown! So looking forward to going up to Scotland and seeing family and having people over to stay at the house we moved into last September! Oh and finally meeting and socialising with our neighbours! 
Hope everyone is coping with symptoms this week xxx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all,

Thanks @Karden and @grannyp , it is surprisingly satisfying to do a bit of cleaning,  it's not usually very high on my agenda! 

Glad the biopsy was ok and it would be good to get the results asap @Karden . I know what you mean about the social life... I was thinking this morning that apart from the chicken run, the only other place I go to is Chesterfield Royal hospital! It will be so cool to go to Matlock.... hope the bloods are okay and hopefully this week's treatment should be straightforward? Do you have the drugs as an infusion or injections? 

The grey weather kind of works for me as I can still get out for a stroll but being indoors feels quite nice too.

Wow @grannyp , painting a wall sounds ambitious,  well done you!

I like the idea of a treat after last chemo. Trouble is, everything tastes so horrid and I've become so weird about food, I couldn't really plan anything! 

I was wondering how the folk who haven't been on for a while   @dipitdee , @Shine13 and others,  are? Hope things are okay and maybe you care just having a life 😊. And hope you are in the up,  @Woodybird and @higgi 

All the best for Tuesday  everyone xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman I'm glad to hear that everything is ok with your heart - it sounds like they did a thorough check at A&E and they looked after you well to keep you safe.

The fatigue can be a nuisance but you managed to do some cleaning - that's good and counts towards your exercise.

@grannyp I know you're dreading the next paclitaxel but it's the last one and you will get through it. Why not plan a little treat for yourself to enjoy once it's over and then you have something to look forward to? It could be a meal or you could treat yourself to something new or plan an outdoor picnic in the garden if the weather allows, anything really that would give you some pleasure.

I had the biopsy yesterday and it was fine, just a little uncomfortable as you will all know. 3 separate samples were taken and they have been fastracked so I may get the results by the end of the week.

I'm having my bloods done this morning and seeing my oncologist before having herceptin and Perjeta on Thursday ( no Chemo drugs this week).

It's certainly a busy week for me with 3 hospital visits in 4 days. What an interesting social life I have!!

I hope everyone else is doing ok and managing to get some level of enjoyment out of your days depending on where you are with your treatments.

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Sorry to hear that you had to have a trip to A&E @donkeywoman I am sure that wasn’t in your plan for Monday! But good to know that everything checked out ok. That must be reassuring and, as you say, you know that you just need to take it easy until chemo is over. Having an existing health issue must make chemo even more difficult. 
Also you are at that point of ‘so close but still so far’ with 2 treatments to go. I know how that feels - it was definitely one of my lowest points. Even though I would still do anything to get out of the last one, my mood and mindset have definitely changed. 
Just try to make the most of the days until your next treatment while you aren’t  feeling too bad. Easier said than done as we all just want to get it over with! 
Getting into those dark corners of the house can be very satisfying😊 We are approaching the end of a very long house redevelopment and I have ‘timetabled’ in some much needed extra cleaning for each day over the next week. If the weather holds up I may even get back to one of my designated jobs of painting a very big terrace wall. It has all been very hit & miss since last October when I had surgery but now determined to ‘do my bit’ as much as possible! 
And enjoy your animals. Take care x

PS Hope the Hb holds up🤞

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all, 

Thought of you today @Karden , hope the biopsy went okay. 

@grannyp it's good to think of you having a week 'off' and hopefully feeling well enough to enjoy it, even at a reduced pace. I've felt quite well today, but rang the advice line about an ongoing issue I have around my heart meds and how I've been feeling. The advice came back from the consultant, to go to A and E! Not quite what I was expecting, but I went and have had a good checking over - ecg, bloods, examination etc. All came back pretty normal and even my Hb is up a bit! It was a long few hours, but I was lucky and they were very careful about keeping me separate from the very busy waiting room. So I felt safe, unlike the experience of others in this group. Home now and thinking it over, as I guess it means that these energy levels and heart which needs a bit of extra care will be my norm for the next couple of months...

Hope everyone else is feeling okay? I have another 10 days before next treatment, so I'm planning a gentle time - I'm even getting to a few of those dark corners in our house which haven't seen a cloth in a few years... xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Start of yet another week! I hope you have all had as good a weekend as possible, that side effects have been manageable and that energy levels are improving. 
Good luck with any treatments and appointments this week. @Karden hope your biopsy shows good results and that future treatment goes well.  Most of us are now in sight of the end of the main chemo regime, although I appreciate that many of you will be continuing with targeted therapies and still have a long slog ahead of you. 
I have a week that should be free of any hospital appointments etc. Final paclitaxel next week -still totally dreading it and would do anything to get out of the last one!! But I have finally found myself able to start looking beyond this chemo nightmare and think of getting back some of my life. I still have radiotherapy & hormone tablets to ‘look forward to’!! - but my mindset is definitely changing and it will for all of you too. None of us know what the future will hold, so why worry about what may not happen. I know I will not be able to hold on to that view all of the time but I will try my hardest to be as positive as possible. 

No sunshine here this morning but am off on the morning dog walk soon. May get a bit further today. Take care everyone x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden @thanks for quick reply ! Oh glad u got out in garden sunshine...🙌🤩

great u offered to b part of a trial as it will help plan better treatments in the future . I find it really fascinating the different approaches and chemo combos ! 😂 

mine had responded to EC (mm.. but that’s all they expect with non targeted chemo ) and they are hoping for big things with the targeted therapy ... I’m holding out for this !!! 🙏 

hope you have lovely evening & Sunday !! Xx 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Yes it does sound very similar @higgi .

The difference is that due to being on the trial I started with 4 cycles of the Docetaxel/Pertuzamab/Trastuzamab/  cyclophosphamide. I was fortunate in not having the bone and muscle pain though.

At the diagnosis there were no lymph nodes involved and if this is still the case they will remove the sentinel node when the lumpectomy is carried out. 

Hope you're feeling well enough to get some enjoyment from the lovely weather. I've just been sitting in the garden in the sun and it's given me a real boost. 

Sending you a big hug. 🤗🤗🤗

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden  ... u sound similar stage to me just a month ahead ! I’m her2 positive so I had chemo 1st (2 lymph involved) .. so I had 3xEC then 3x docetaxel/herceptin/perjeta... got last one 17/3 ... the plan is surgery end April and then another year of herceptin but only if they think it’s helping . They will look at mastectomy tissue to work out success of chemo rather than an Mri . 
hope you find out soon and know wats wat ! The waiting is always the worst ! 
what surgery is planned for you ?  Did u have lymph involved ? 
I had worst night ever with full brunt of chemo but trust it will improve now ! I too hate walking at weekends as Everyman n his dog out so to speak 🤣

big hugs to everyone! We got this ! We can and are doing this !!! X 

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all

@Karden sorry you had that curve ball thrown... You sound philisophical about it, but it can't be easy to have yet more waiting. Hope the biopsy goes smoothly and the results come through quickly. Hopefully you are in the easier days and can enjoy a bit of time without treatments - in spite of the crowds! 

I'm a bit wobbly and light headed today, which is annoying as it's an lovely day and I had great plans for getting out and having a decent walk. I'm not going to push it - have already been back to lie on the bed twice... It's a lovely view from the window anyway, so will enjoy the light if nothing else.

Last injection today which always feels a positive milestone. 

How is everyone else feeling today? Hope pains, fatigue, general chemo stuff are all manageable and allowing you to enjoy the sun, even if just wrapped up and sitting in a chair outside (maybe my next move) xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman @grannyp  I hope your energy levels are improving, it's a real nuisance isn't it? Especially when you want to do all the things you would usually do but your body just won't let you..

This sunny weather really makes me want to return to my old self and I'm determined to try and make the most of each day and to at least get out into the garden or  walk in the woods which adjoin my street. The only trouble is that it's so busy everywhere at the moment, especially at weekends. Everyone else just wants to get out walking too and it's difficult to avoid other people at times which puts me off going out.

If I don't go out today I'm going to get my sewing machine out and finish off a dress I've started. I find it very relaxing.

Hope you have a good weekend. x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi , @Woodybird I'm sorry you're struggling with joint and muscle pain, it doesn't sound pleasant. You all appear to be very stoic and dealing with it the best you can and I admire your tenacity.

I had a whirlwind of a morning yesterday. I was getting ready to go to my pre-op assessment appointment when I got a call from my oncologist. She was back from her annual leave and had reviewed my MRI result. The tumour hasn't reduced as much as expected and this could mean that either it still has live cancer cells or it has responded to treatment and is scar tissue.

She has discussed it with the Professor who is in charge of the ROSCO trial I'm on. If further chemo is needed they agree it's best to complete it prior to surgery. I'm having a biopsy on Monday morning and the results will take 10 to 14 days. 

If cancer hasn't responded well then I will move onto FEC T treatment straight away for 3 or 4 cycles then surgery. If no cancer shows up then back to my surgery date of 26th March. In the meantime, I am having Herceptin and Pertuzamab only on Thursday.

It was difficult to take in as there was a lot more detail to absorb but I'm ok about it. If it's decided that I need more Chemo then I'd rather get it all over with rather than have a break until after surgery then have to start again.

I suppose we need to be prepared for the unexpected in this cancer challenge, don't we and to put our trust in the experts.

I hope everyone manages to get some enjoyment from this weekend. Best wishes to all. x

 

 

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp  hope you got out again for another walk ... little n often is good ! 
I’m hoping I’ll sleep tonight as it’s day 2 post chemo n no steroids today ! Plus i did a long walk with a friend ... 4 hours of fresh air ! Was breathless a lot but took my time .  
on the subject of bone pain I have 2 types 1- injection induced .. mine starts day 7 last day of injections and is a pulsating pain in sacrum comes n goes in waves lasting 10 seconds ?  cud go on 1-3 days !  
2- the bone muscle ligaments pain caused by docetaxel/herceptin/perjeta . This comes on 100% time if I sit not moving ... it’s gown back of legs ! Horrible! I also get joint pain in hands n feet and ligaments in pelvis if walking a lot ... but that settles quickly . Fortunately none in bed at night ! . 
hope everyone managing and moods ok ?? . Enjoy weekend hope u all manage to get out a little 🙏😘xxx

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone

Hope you are all having a lovely day in the sunshine. I don't have a great deal of energy today but have enjoyed relaxing indoors with the sliding doors open, looking at the view and listening to the birds. I would prefer to be outside in the sun but I did have a walk early morning and am hoping that by resting now I can do the afternoon dog walk with my husband in a little while. I will then probably be ready for bed!! But am hoping that tomorrow I will have more energy and most of the aches and pains will have gone - on the last cycle this was the day when I was at my worst before fairly quickly getting back to almost normal activity. 

I am another big fan of Aveeno. I already used Aveeno hand cream regularly, so when the onco nurse recommended the moisturiser I decided it was the one to go with and I am also using the shower cream. When discussing radiotherapy with my oncologist recently she again suggested Aveeno. 

@donkeywoman Good to hear that you seem to have turned a corner and are on the up. Hope it continues and you can get through the rest of this cycle relatively easily.  And fingers crossed for the Hb levels. I had been trying to eat extra spinach, watercress, nuts etc - and anything else that seems to have some iron in it! Don't know if it did any good or if I was just lucky that the levels stabilised and improved a bit. And yes, I have already had surgery and am due radiotherapy in April - hopefully starting immediately after Easter.

@higgi See you had a very long day like me. It must have been nice to have some other ladies to chat to - as you say, we don't get many opportunities for doing that at the moment. I am treated at a small hospital and we are all in our own little 'pods', so even if the unit is busy we aren't able to chat to the other patients. You do still have a long haul in front of you. It must seem quite daunting now, but at least you will soon be able to tick off the chemo. And ring the bell! I did hear the nurses saying that two of the ladies who came into my unit during my last cycle were there for their regular herceptin and they were in and out fairly quickly and certainly did not look as though they were having a tough time. So hopefully that will be a breeze after getting through everything else.

And well done on the continuing exercise, despite the bone pain. 

@Woodybird Hope the bone pain is easing. I am suffering with bone and muscle pain today - not pleasant is it?  I think the filgrastim can give quite bone pain. I have the one dose injection 24 hours after chemo and each cycle I have had back and pelvis pain 4 days later, lasting for a couple of days. It is a totally different sort of pain and always appears at the same time, so I am sure that is what it is. 

Hope everyone else is coping ok with side effects. Have a good weekend and we will then have ticked another week off. We are all getting there and doing so well! x

 

 

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman yes, think we are similar dates. My initial high energy, euphoric feeling was probably steroid related, and didn't last very long! Very tired by day 3, after which bone pain started which I think was due to the filgrastim injection, by day 6 I had the throbbing that @higgi has described often. This is the first time I've experienced that. Been for a short walk every day, but felt slow and old for many of them! 

Aveeno is working for me too. Even using it on my dry heels, and it's helping. Nails are getting ridges but nothing worse. My tongue feels like it's too big for my mouth, weird feeling, just thought I'd put that out there 🤔🤣

Had a nose bleed today, which left me feeling a bit drained. Maybe that bone pain meant the bone marrow had produced too much of something 🤣 Wishful thinking.

Hope you all feel better tomorrow, wherever you've started today. Sun for us the next couple of days, hope it's with you too.