@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
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
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
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
@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 🤗
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!
@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
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.
@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
😂 @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
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
@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.
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🤞
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
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
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
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. 🤗🤗🤗
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
@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
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
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
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
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
@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.
And everyone else ! Yes all went well with cycle 5/6 herceptin plus perjeta plus docetaxel.. supposed b 3 hours infusion snd no waiting after as no reactions last time but was still there 8 hours as they were running late n busy !!! Long day .. but passed really quickly chatting to 4 laters ... we all agreed we loved going in a bizarre way as it was a trip out to meet n chat to others which due to covid we can’t otherwise do . One had cervical cx one ovarian one endometrial n me with breast ... we had a good old natter !
I saw the bell on way in n I’m go on ringing that next time !
I still have surgery to come probs week 12 or 19 April mastectomy n total axillary clearance followed by radio n 18 more cycles of herceptin (that’s another year !!! ) however they assure me it’s like mini chemo won’t b any Wer near like this I’m having at mo ! Phew !
I still have energy to exercise cycle n walk and do more than ever despite horrid bone pain now ... it only comes on when I sit .. but I can’t move 24/7 🤣🤣🤣
I am lucky I have no nausea or mouth ulcers n nails still on ! Touch wood ! I do have dark gel on as advised ... Skin is dry but love aveeno ... it’s best by far for me !
taste is altered but I eat loads ... put 3.5 k on since start ... so they say that’s really helped keep me strong !
hope everyone managing ... b kind to selves u are doing absolutely amazing ! Xxxxx
@grannyp thank you, yes, going with my energy levels is definitely the only possibility. I am feeling better, thanks, yesterday seemed like a turning point. Just more like me and able to function a bit more, as long as I have a sit or lie down in between activities! And when I say activities, I mean giving the donkeys a carrot or picking grass for the hens... Although I did manage to hoover the stairs and even hung a wash outside - whoop whoop!
Your chemo day sounded quite traumatic as well as very long - hope you have continued to feel okay. A fish finger sandwich in bed was definitely well earned. Oh, that feeling of wanting to just drive straight past the hospital and not stop for the treatment - yep, I recognise that. But you are so nearly done, so well done you. I think you have radiotherapy to come? But you've had your surgery, like me, haven't you? I have 2 more to go, so 5th is next. That is heartening to hear, that your Hb has gone up - I'll keep eating the eggs and nuts and see what happens.
@higgi hope you are doing okay in these tricky early days?
@Woodybird - think you are about the same as me, so maybe starting to feel a bit better?
@Pesto I wonder how you get on with oral chemo?
And @Karden hope you are over the worst and will be thinking of you when you get results on Monday.
Hope everyone is as good as possible on this lovely sunny day (in Derbyshire anyway!) xx
Hi @donkeywoman Hope that by now you are beginning to feel a bit brighter. You really do have to listen to your own body and giving in to the exhaustion is sometimes the only option. A bit of fresh air does help, especially now the weather is getting brighter - hope that it has improved up in Derbyshire! But other than that we just have to crash and rest if that is what our body needs. Hopefully another couple of days and the worst of this cycle should be over?
And fingers crossed for you on the hb levels. My bloods this week showed that mine had risen this time - not back to where I started but definitely a reasonable improvement. So you never know, you may be lucky! Is it your 4th or 5th cycle next? Sorry, I lose track of where everyone is. I haven't had many side effects but I definitely have chemo brain at times!!
Hope that everyone else is getting through the week ok. Quiet on here, so hope that is because all is going we are getting on with other things.
@higgi I believe you had number 5 yesterday, like me. Hope that it all went well and you are feeling ok.
I am feeling so relieved that I now only have one cycle left. I really felt at the beginning of this week that I would not be able to get through the last two and I think that if I had been driving myself to the hospital yesterday I may well have headed off in a completely different direction! But I got through with a lot of lovely chat and encouragement from the nurses. It was an even longer day than last time - 9.30am - 6pm -as they were very busy and couldn't speed things up where they had hoped to and also we had to have an hour's break in the treatment due to me suddenly feeling nauseous and 'woozy'. They were certain it wasn't a reaction to the drug but still had to be cautious, speak to the consultant and take a break from the drug. Anyway, all was ok and the consensus was that it was due to the cold cap rather than the Paclitaxel - a mild migraine really. And made worse by anxiety. I stuck it out with the cold cap _ I have got this far and don't want to give up at almost the last hurdle. Even though I have had the Intralace hair system fitted, I want to continue to ensure that there is enough of my own hair to hold the system in place. There are obviously things that they can do if there is a substantial hair loss but I would prefer all round to keep as much as I can, especially as it should encourage the hair re-growth.
Anyway, I only have to do it once more. They will request additional anti-sickness pre-meds for me and if the nausea appears I know it is nothing serious and I just have to power through!
Straight to bed when I got home and the decadence of a fish finger sarnie in bed! I was ravenous as I had only eaten a biscuit since breakfast - my lovely lunch that was provided had to be sent back due to the wretched nausea! Feel fine today and am hoping that I get through the next two weeks without much more than a few days' tiredness.
Well that is me. Best wishes to all of you and remember we are powering - or staggering - through yet another week.x
Evening all, thanks for your supportive words, I couldn't even respond yesterday. But a bit brighter this evening, tapping at this in bed. I think that giving in to the exhaustion works better for me. I do get out each day, but if I push myself too much, I just sit here worrying about what I should be doing and that makes me worse. I'm too light headed to do much, so if sitting up in bed, eyes closed, listening to the radio works, I'll just do that. But hoping for a bit more oomph tomorrow.
Hope everyone is managing as good a day as possible.
And it looks as though we will get some kind of summer - yay! xx
Not too bad today, done some laundry, cleaned a bathroom and emptied the dishwasher, and all before 1: 00 pm.
Nothing unusual normally but rare for me to even do one without a nap... I might be even more adventurous later and get some ladders and wash all the upstairs windows. Well I would if I like heights lol
Got an hour long physiotherapy T call this afternoon, looking forward to it like a hole in the head. Did not do any of her excersises last week as too tired and always asleep. Am expecting a ruler over my knuckles...
Agreed @grannyp today is a new day, new week and Monday and It has finally stopped raining here in glorious N Nottinghamshire. But going for a walk....I will mentally join Higgi, mind and body et al
Sorry your day was not too good yesterday, but we all have them, and reading comments on here I feel so much better and far less of a moaner, though Hubby is fed up with me saying sorry. He is brilliant but dealing with me and my long snoozes never mind my lack of appetite is very frustrating for him. He has mastered walking on egg shells.
Regarding food, I would communicate with both him and the children what do fancy for dinner most days, the answer was always don't know, not sure, what do fancy Mummy... I fancy that.... Oh no not today maybe we could have that tomorrow. So really it is just tables turned....though I know that sounds rather harsh.
Big hugs to all and I forgotten the Donkeys, bless them
Sorry you had a rubbish day @donkeywoman We do just have to roll with whatever each day throws at us but it is definitely very hard on rough days. The lack of energy is so debilitating and makes a low mood even worse. I think that all we can tell ourselves after days like that is that we have got through another day and we are one day nearer getting to the end of this. I find one day and one step at a time difficult sometimes but it often is the only way we can look at it all.
Today is another day and really hoping that you feel a bit brighter.
And we all need to remember that we have got to the beginning of yet another week - well done to everyone! And good luck with all treatments and appointments this week x
Thanks @grannyp - I did get out for about 40 minutes with the animals, but to be honest, I've had a pretty rubbish day. Nothing dramatic, just no energy, horrible taste, struggling to eat, bunged up (by my standards) and low in mood. But I just propped myself up on the sofa and watched tv and have now come back to bed for a bit. I know I just need to let this pass, but it's hard in the middle of the rough days, isn't it?
@higgi glad you had a good birthday and hope the post exercise aches and pains are manageable. Fabulous progress on the cycling!
Hope everyone is having a good evening - or at least a peaceful one.
Ha @Pesto not sure I fancy a trip to the doggy beauty parlour, but each to their own! xx
Hi again everyone
Thanks @donkeywoman and @Pesto for your kind words about my rambling post. I genuinely do feel better than I did a few days ago - that old rollercoaster of emotions keeps on going, doesn't it! And we keep going through that old DABDA cycle that we were talking about. I have said several times to family members that once this treatment is over I am going to view my situation as being not dissimilar to many other 60-something year olds - anything could unexpectedly jump out and hit me, in the way that this breast cancer did. So why worry about a recurrence? It could happen but it very well may not and then again many other things could too. We all have to rebuild our lives after the active treatment and making the most of everything has to be our aim.
I do always try to be a positive person. This situation has tested me on that big time!! But I do hope I m beginning to get back to my usual frame of mind. I have certainly done more this weekend than I have done in months and that has helped the mindset tremendously. It seems that the tiredness is improving too. Fingers crossed!
@donkeywoman Hope that you got outside with your animals today and that you are feeling a bit brighter. How are you feeling? Is there any improvement with this cycle? I do hope that you don't have to delay the next one but, as you say, better to prepare yourself for the possibility.
@higgi Belated birthday wishes and well done on your fabulous cycling achievements. You are quite right to say that we should be looking at what we have managed to get through so far. We have all faced physical and emotional challenges and we are getting through. I also have bloods etc on Tuesday ready for cycle 5 on Wednesday - I will think of you and hope that yours all goes well. Forgive me, I don't recall where everyone is in their treatment plan - have you already had surgery or is that still to come after chemo finishes?
@Pesto Hope you enjoyed your glass of wine. As you say, we have to build back to some sort of normality. I have to admit that I have had a few glasses over the last couple of months. My taste and appetite haven't been affected at all and I have very much enjoyed a glass of wine here and there during the second half of the cycle when feeling pretty normal. My onco team, including the consultant, said right from the start that they are more than happy for their patients to have a glass of wine or g&t or whatever they fancy if they felt like it. I know that some places seem to prohibit it and obviously many people couldn't even face it.
Hope everyone has a good week, whatever it holds x
Your post was never too long, nor rambling. I found it very interesting and agree regarding diagnosis etc
@higgi wow, so delighted you have enjoyed your birthday... happy birthday. I am joining you although only in spirit and feel so much fitter reading your tremendous exploits
The grey is here too today, in fact bloomin miserable, but the comments on here always brighten my day and make smile, everyone is so positive, it is hard to feel down when reading of you all. Treats, hampers, cakes marathons, looking after your lovely Donkeys.
Trying to have my old Sunday pre lunch imbibe of a glass of white wine. Normality has to return soon. In fact it tastes rather nice. A first since October apart from a small glass of champers last weekend. I will prevail.
A genuine open question to all
On Thursday Humphrey my old pooch is going to have a manicure and a little wash, why can he when we can't. I would even consider going to a poodle parlour now ! I know he is house trained, very soft, won't hurt a fly, wears a dog collar and when out a lovely lead. Surely if we all agreed to being like him we could be done... !!!!!!
Hi everyone! Can’t believe Wer the time goes despite this gruelling chemo ! I’ve had an amazing birthday ... even walked a half marathon for it ... n yes I suffered later with groin n bone pain !! 🤣 still cycling like a nutter despite bouts of diarrhoea cos I love spicy food ! I’m now at 565 miles on 39 days over 1/2 way to john o groats !!! I have more aches n pains when I lie down ... exercise massively helps me . 🙏
I’m sleeping a bit better as persevered with valerian root 🙌 I’m due blood Tuesday to b zapped again wed 5/6 cycle (docetaxel plus herceptin plus perjeta) bad boys !!!! I’m now day 82/126 of chemo ... so proud of that ! Hope u are all feeling proud too ... look at wat u have done rather than wats left to do !!
big hugs to you all stay safe ... ps don’t forget to do deep controlled breathing and mindfulness as well as some moving ... above all b kind to yourself u r amazing. Xxxxx
It didn't seem long at all when I just read it @grannyp 😊. It was very interesting, thank you. I do agree that I find this area of the forum the most supportive. I look around sometimes, but think that being in a smaller, more sensitive group is more helpful. I really like your blend of positivity and realism... Glad you have some sunshine - it's not made it to Derbyshire yet. But I will get out to the hens today, they always brighten my day xx
Morning @donkeywoman and everyone else. Gosh, you aren’t prying at all. We are all in the same situation one way or another on here - all with our own individual diagnosis, path through it all and reaction to what has happened, but united by all having had a cancer diagnosis. I had a fairly ‘standard’ hormone receptive tumour found on screening and not particularly large (16mm) or aggressive. A small amount of DCIS was found on surgery - again, not the most straightforward scenario but not the worst. However, despite the relatively small tumour a large positive node was found at the time of screening and the node clearance found two more were infected. This has made me much more high risk for spread or recurrence. My risk is no worse than many others and I know that I am having treatment that will minimise that risk. And I do firmly believe that we have to be as positive we can - worrying about what may or may not happen won’t change anything. I think I had a wobble when I got my radiotherapy consent form and read about the zapping of the higher nodes. My consultant is excellent but hadn’t gone into detail in this (maybe she thought it wasn’t necessary). I took myself off to read about it and convinced myself that I was now extremely high risk, only to eventually realise that it is fairly standard procedure with node involvement- and also realising that it is actually another good thing to minimise risk! I also seemed to be seeing so many posts in different threads or groups where people were using phrases such as ‘thank god my nodes were clear’ and ‘the most important thing is that I had clear nodes’ I try to be conscious of others’ situation when posting on any of these sites and think we should be careful of being vocal about how terrible we think a situation would be when people reading the post are in that situation. I am very happy for anyone with a ‘straightforward’ diagnosis and totally understand their relief but let’s be respectful of each other.
Anyway, I am for now sticking to these chemo threads where we all support each other however we are feeling or responding to treatment.
And the sunshine and feeling much less tired - almost normal!! - have helped me.
I think it is hard to push the ‘what ifs’ to the back of our minds but we do have to learn to do that and to make the most of our lives once we have got through this horrible chemo phase.
Hope everyone has a good Sunday. xx
@Woodybird glad you have finally had the letter and will hopefully soon have the 1st jab. It did feel good to get one.
@Karden fingers are firmly crossed for your results on the 1st, glad you are managing your symptoms, the fatigue just gets worse with every dose, doesn't it...
@grannyp hope I'm not prying and don't respond if you don't want to or feel like it. I just noticed that in your last post you mentioned your outlook and likely outcome. I wondered if this is something that is bothering you a lot? I sometimes wonder about what might happen next but am generally surprised about how little I think about it. Anyway, I was just wondering and hoping it is not too painful for you.xx
Hugs to all and I love @ woodybird's bit about staying hopeful
@Woodybird Good news on finally getting the CEV letter & hope you get your vaccine soon.
@Karden Hope your mri shows good results and lots of luck with the next step if your treatment.
@donkeywoman Hope SE not too bad with this cycle. Regarding the hb levels and tiredness, I have actually felt so much less tired the last two or three days. Hoping that my hb levels have at least stabilised🤞 Hope you might have the same. I was out and about yesterday and this morning and just such a different feeling than at this stage last cycle. Mind you, I think the glorious sunshine here today is helping as well!! Trip to the local food market, wander along the seafront and a takeaway bite to eat by the sea and think I will go out and do a bit of gardening. Was feeling very down and pessimistic about my outlook yesterday but amazing how a spot of sunshine can lighten the mind. Doesn’t change the likely outcome but I am managing to look at it - at least for a few hours! - from a different perspective.
Hope everyone else is doing ok and having as good a weekend as possible. Yet again, we are another nearer the end of treatment! xx
@donkeywoman yes, "whizzy with steroids", I like that and describes perfectly! Crashed yesterday, really tired but had terrible nights sleep. Bit better last night and finished the steroids now, so hopefully sleep will return to normal.
On a positive, received my letter classifying me as CEV - finally - which should hopefully mean my vaccine letter will now swiftly follow 🤞
Stay strong and well, but if you're not, stay hopeful. X
@donkeywoman I'm doing pretty well, I'm now on day 9 of the 4th cycle and my main issue is fatigue and a congested, bloody nose.
It's strange how different side-effects take over each time but I am ok and dealing with it. I had the MRI yesterday so am waiting to find out the result on 1st March.
I hope everyone has got something to look forward to this weekend. It's looking very grey and damp here in South Yorkshire but I'm going to get out for a walk. xx
How is everyone feeling today? I had number 4 yesterday, all went fine. I now just have that strange feeling of being tired but also whizzy from steroids, as well as flushed and a bit bunged up. A heady mix!
@granny P, 3 weeks sounds really good, hope it goes to plan 🤞. I'm working on myself to accept a week off next time as I can't imagine Hb improving much, as I've just had the poison that caused it! I will mention reducing the dose again, as the pharmacist I spoke with said that I've had the most important doses.
@Woodybird, hope you've carried on feeling ok and getting out in the garden
@Karden, how are you? Hope your possible last cycle is going as smoothly as possible.
And hope everyone is keeping their heads above water on this soggy Saturday xx
Good luck with your treatment tomorrow. I agree with you about not delaying - I just want to get on with it and get it over and done with. My Hb levels have also been down at the last two blood tests - not as low as yours but I am still slightly anaemic and I can feel that it is making me tired. I am hoping it hasn’t dropped much further next week. I have less than 3 weeks to go now and just want to get there. Fingers crossed that yours might pick up a bit and the tiredness isn’t too bad after this treatment.
@Woodybird I think we all go through the whole grief cycle again and again. A friends who has been living with cancer for over 12 years - and is very well - says that at stressful times it really helps to identify where he is on the DABDA and either come to terms with how he is feeling or do some displacement activity.
And yes we are all getting through this in our own way - and we should at times remember just his well we are doing. xx
@Woodybird glad the Docetaxel (it's my main drug all the way through) is okay so far. Best to grab those bits while we can, isn't it? Hope you enjoyed the garden, I'm just in from an hour outside, much better. Chemo tomorrow so I'm out as much as possible today. I'm a bit anaemic (92) but okay to go ahead. They offered me a week off, as I was moaning about how rought I'd felt, but as it's safe, I'd rather get on with it. I suggested a dose reduction, but that isn't recommended. Hey ho, see how we go.
@grannyp we are on the same wavelength I think. I've been round the grief cycle several times, though rarely angry, to be honest. I guess I was bargaining today - 'as this is just to keep cancer away, rather than reduce a tumour, couldn't I reduce the dose to help me carry on to time?'. Ah well, worth a try!
Hope everyone is feeling as okay as possible and totally agree, spring is starting to poke its head up, which is encouraging... xx
Cycle 4 yesterday, and a drug change to Docetaxel (by itself), which I was dreading. No nausea and generally feel good (tired but didn't sleep well in the few days running up chemo). Might be too early to be so optimistic, but liking how it has begun.
@grannyp looked up DABDA and feel I've been up and down that scale multiple times already. Recognising it is step one, understanding our feelings and moods will change all help, even if it doesn't always feel like it.
I admire everyone here for going through this, in whichever way suits or dictates it's way to us, but I have to give special admiration to @higgi. Well done that woman 😃
Glad it's warmed up a bit, and the spring flowers are starting to poke their heads up. Makes me feel like poking my head up a bit too.
Might be pushing my luck, but going to go in the garden for an hour while the sun is out 🤞
All the best to you all.
P.S Don't be tempted to use spray deodorant! I forgot the instructions (this might only apply to ladies who've had surgery), and freshened up before PICC clinic with a quick spray on Monday. I couldn't even feel the spray going on due to numbness, but boy did I feel the irritation afterwards! Better now thanks to the steroids apparently (I didn't ask the nurse what to do if I wasn't just about to have steroids 🤔).
Morning all and hope everyone is coping as well as possible. @higgi the treatment that you still have to go through must seem never ending. And it must be hard for you and those in the same situation to see others getting close to the end of ‘active’ treatment. As you say we are all different and all on a different path but I will freely admit to feeling envious at times of those whose path has been more straightforward, particularly with no chemo to endure. I don’t feel good about myself having those thoughts as we have all faced the devastation of a cancer diagnosis but I think it is just human nature. Your determination to live life to the full is admirable and something we should all aim for. And well done on all your exercise and fund raising. We do all need to find something to focus on. @donkeywoman yes I agree that my mood can change so quickly and go from one extreme to the other. I am beginning to predict when certain things will alter the mood but at other times it is just a totally unexpected swing of emotions. And being able to talk about all this to you lovely people is a great release. I have to share some of how I am feeling with family but I know that they are struggling and dealing with their own reactions to my diagnosis and treatment. Whilst I can’t really help them with how they are feeling, I don’t want to burden them even more, especially when my moods change so much. It is so important for all of us to be able to discuss our worries or concerns- or just rant! - on here with others who know just what we are going through.
One thing I am finding though is that ever so slowly I am spending more time discussing things going on in my family’s lives. I almost found it impossible for a while but I now listen to them and talk things through much more easily than I could. I am starting to wonder if I may be edging closer to the end of that whole DABDA grief process that we all go through. I think it is actually a series of emotions that we will go through again and again but perhaps beginning to recognise where we are in that process is a good step in the right direction.
Anyway, all a bit profound for early morning!! Off for a dog walk now. Hope you all have as good a day as possible xx
@higgi you are an inspiration! Well done on the cycling and fund raising, brilliant stuff. And a campervan on the way, fabulous! I'm a bit in awe of you 😊
@grannyp and @Karden it does feel tough, doesn't it, but it is (for me at least) very helpful to share with people who get it. I do tell my nearest and dearest, but try not to go on about it because they are concerned enough without me adding to it. But at least on here we can express ourselves without fear of adding to anyone's burden. It's just sharing and comparing notes.
I don't know about anyone else, but I can change so quickly, it's hard to keep with myself! I have these lovely moments of feeling in control of it all and seeing the end in sight. Then, within a short time, I can be quite desperate, not being able to imagine how I'll keep going until the end of the next cycle, let alone the one after that! Thank goodness for birdsong, trees and junk TV, as all of these (and the donkeys of course) can take me out of myself and to a gentler place...
Take good care all, let's all keep going in our own ways, as gently and kindly as we can xx
Hi thanks for the info re eyelash serum !
I try not to think about what’s still to be done ... in my case .. 2 more chemo , mastectomy inc nipple full axillary clearance radio herceptin n pertuzumab (18 more 3 weekly cycles). ,, think that’s it 😋... rather I focus on ow bloody amazing I am to be doing this !!! I focus on the amazing campervan on Order (July) , girlie holiday October and retiring to travel the world July 2022!!!!!!
Yes cancer has changed me forever and I gonna live life to the full because reality is I don’t know wats round the corner .,, I know I’ll have had too to toe treatment of the very best !!! Thanks to nhs and cancer research .. ❤️
it’s hard I know but many of you have had the surgery and u r nearly done ! Fantastic!! keep going even though u tired !! As I’ve said previously we are all different and our experience is different... for me I have been able exercise and I’m sure that has helped !! I’m now at 480 miles cycling in 34 days .,, over the moon ! And I’ve raised nearly £2000 for preventbreastcancer.
remember ... u are all amazing inspiring beautiful... love yourselves spoil yourselves . Massive hugs to you all xxxxx
@grannyp I have been recommended Silly George eye lash serum for growing lovely long lashes and it works on eyebrows. Hopeing it helps things grow back quicker. The web site is offering a free mascara at the moment if you it buy now.
@donkeywoman @Karden Treatment does seem never ending. I have hormones for 5 years may be 10 . Then there is an infusion for my bones for 6 months. Kadcyla for 18 months after surgery. I think they are assuming with tripple positive I will have residual tumour am hopeful it will be clear from my lymph node after all this chemo.
I think the long term targeted stuff is no way near as bad a the chemo. Heres hoping.
Hope this week is not to bad for all. not as cold now which is a big plus. I seem to feel the cold lot more on chemo especially feet.
Hi @Karden @and @donkeywoman I understand just how you are both feeling. I am also completely fed up with the whole thing and hate not feeling like myself or being able to do the things that I could previously. As you say, @donkeywoman I was expecting to feel much more positive at this stage as the end of chemo is in sight but I certainly don’t. However, when I discussed this with my oncologist yesterday she said that this was perfectly normal and that the vast majority of her patients feel like this. Apparently the penultimate cycle is the one that most people seem to dread - almost at the end but it still feels a long way and everyone is fed up of feeling as they do. She assured me that my mood is likely to improve once there is only one left. I will wait and see if that happens but she did gently convince me to just pull myself together for the final push. If the wretched tiredness eases I am going to try whatever displacement activity I can manage over the next 3 weeks.
I can only imagine what it feels like for both of you - and many others on here- with drugs ongoing for the rest of the year. And I know that you are still to have surgery @Karden . I still have radio to go and then hormone tablets for 10 years - oh and zolandronic acid for 3 years!! But I do truly think that we will be through the worst part once chemo finishes.
Starting to plan my radio yesterday did help a little. I will have to do 15 days as I don’t qualify for the accelerated 5 day treatment. And I have an hour’s drive each way to the clinic for those 15 days. But by the time I start - immediately after Easter - the weather should be better and we may have some loosened covid restrictions. So I am looking on the bright side that at least at the beginning of the treatment we may be able to take the opportunity for walks (or even lunch!!!) somewhere some days. I know the travel and treatment will become tiring as it goes on but trying to be positive!
So pleased to hear about your wig @Karden You are right that looking like yourself is a big boost and I am sure that it will give you the confidence that we all need to recover. That is definitely how I feel about my hair system.
Hoping we can all soon start to feel a little better. You are definitely not whinging @donkeywoman - you just feel like we all do. We definitely didn’t want to be in this situation and we are all trying to cope as best we can but it is all really ****** and we do just want to feel more like the person we were. The end of chemo will undoubtedly bring its own challenges but we will be out of the worst and hopefully life for everyone will also be beginning to slowly return to some normality. x