Thank you for your reply it means a lot to me to see how you have all have got through this treatment.
It definitely feels strange on the othet side of the fence so to speak. I find myself subconsciously checking the medication in when having treatment. Although i dont know much about oncology or chemo as my back ground is district nursing for the last 30 years. Just feels hard psychologically to not be able to help out now when needed.
Bloods are still taken by the phlebotomy department but have given us a time visit now instead to try to avoid further contact with other patients etc. Its feels strange going by myself too but totally understand the reasons why. The safer and less risk the better obviously .
I have spoken to oncology team and for my next appt on 6th April this will be done by phone consultation which is much better than sitting in a waiting room.
On a happier note my vegetable hamper arrived today and like you im trying to work out what meals to cook to save any waste.
Glad to hear you havent needed to take much analgesia so hopefully on the mend now so you can relax and get back to some normality. Pain is awfully debilitating and i dont think u can appreciate it until you experience it personally. Hopefully your tape will be fine too.
Take care and keep safe .
Thank you for your support everyone on the chat .Its really is appreciated as it makes me feel that im not experiencing this dreaded treatment alone and the information you share is invaluable.
Love Daisy xxx
I do feel for you having to go in for treatment but it sounds like you are being as careful as possible as are the nursing staff I am sure. Its interesting isnt it being on the other side of treatment? The 24 hour tape was fine - completely forgot I had it on most of the time the only issue being I couldn't shower. I don't know when I get the results - presumably they will get in touch only if there is a problem. I still have some chest aches from the pneumonia but have not taken any analgesia for 2 days now so am pleased with that. Still coughing a bit but nothing has changed.
My first veg hamper arrives today - quite excited! We used to have them years ago and its always a challenge using it all up as the list of what my husband doesn't like is long......
Re your queries - I can't help with either I am afraid as neither were in my treatment pathway. Hopefully someone who can help will come back to you.
Please keep very safe - do you have bloods on the chemo unit or in phlebotomy? If the latter, if its anything like ours they will have to do something about the waiting room.
Stay safe everyone. Much love xxx
I can understand having the message may feel especially when finishing treatment on Friday. Its such hard times . Hope your 24 ECG results are ok. I totally understand what you mean about hospital. It all feels sureal. I have ordered a meat hamper and fruit hamper to be delivered to try to minimise risk and save anyone unnecessary shopping .I was at Newcross yesterday for my chemo and although business as usual .i was so aware of keeping my distance from other patients. I didnot use the table and limited contact as much as possible and was using handgel. Nurses were trying to keep the 2m distance from each other as much as possible in trying to carry out their duties. Im just glad that i havent got to go again till monday for bloods then chemo next wed.
Can i ask if anyone knows how far into treatment did u get a progress scan ?
I have also had appt to attend the genetics centre as anyone any experience of what to expect from this ?
Hope you are recovering well from your surgery Lisa ?
Stay safe everyone
Love Daisy xx
Hope you are all well. I too got the message and was a bit upset by it - I was discharged from oncology effectively on Friday so to get that message on Monday was not great. Looking at the link that someone else put on here I do not feel I am in the category and they did say that they would have collected up more rather than less people. I have opted out of the text messages.
We are self isolating as is everyone else - we, like many of you, live in a tiny village so can walk without meeting anyone at all or just one or two people. I have arranged to have a weekly bread/milk/egg delivery and a weekly veg box to cut down the amount of times we need to go shopping as I think that is the time that is the most risky.
I had to pop into the hospital yesterday as I had a 24 hour ECG so had to take it back - it was quieter than a Sunday, almost like everyone is holding their breath. No one in outpatients, ED empty (where are all the people that are normally in there)? I saw a friend from when I worked there and we had a conversation (2 metres apart of course) and she said it feels like the calm before the storm. I scuttled in and out not touching anything and really the overwhelming feeling was sadness.
I particularly feel for those on active chemo at the moment - my heart goes out to them as I cannot imagine how anxious they must be.
Sending much love to you all - we will get through this. xxxxx
Dear Julie and Shi,
Thank you so much for your replies. Yes, I have received all the messages and they are all rather frightening. As you I am not taking this lightly but one must strike a balance between living a normal life (well rather restricted and unusual) and not being able to hug the people I love is too much for me!
Thank you, that’s a good point to think that 1.5 million people are getting the same texts. I also managed to finally find a delivery for the end of next week, hurray!
Lots of love to you all and I will be in touch again soon as you always cheer me up!
Hi Hollyleaf, and everyone else.
Yes, it's very scary isn't it. I have also received the "high risk" text and all the follow-up ones (5 so far) since. The most recent suggests packing a bag in case we have to go into hospital - I found that one particularly upset me. I imagine all of us on this thread have?
I'm trying to keep in mind that those texts/letters have been sent to 1.5 MILLION people, many of whom are at a much higher risk than us. A friend of mine with MS, for example, has received one although she isn't on any specific medication that reduces her immunity. I too am still sleeping next to my husband, eating with him and my (adult) children, and not isolating myself from them at all. Everyone is being very careful with handwashing etc, and mine are getting raw with it! The only time I'm leaving the house, like you, is to walk the dog and we live in a village surrounded by countryside so I'm keeping my distance from everyone. We can only do what we can, and trust in the NHS.
It's hard, but we'll all get through this I'm sure. It doesn't seem fair that we have the coronovirus to contend with as well... but forums like this are great and help us not to feel alone.
Take care, with all good wishes, Julie x
❤️Hollyleaf, think everyone is concerned so you are not on your own at all, don’t forget the helpline is available 10-3 to speak to a nurse on here, they might be able to advise you more on precautions. Have you had the nhs separate cutlery etc one, it looks like you have, you can be vigilant and do your best ❤️ keep posting on here there is always 👭 💕💕✨✨Shi xx
I hope you are all coping with the pandemic. I have gone through big swings in my mood from feeling positive as we are all together at home at the moment, to feeling rather low when a text from the NHS alerted me that I am in the highly vulnerable category. If I followed their advice, I should be eating on my own in my bedroom, sleeping separately in a room on my own and not hugging my children. I honestly cannot do that although, of course, I am not leaving the house except for walking the dog but we live in the middle of nowhere. The bit that worries me is that I cannot get anymore online deliveries- I am sure this is a very common problem. I have tried every single supermarket! My husband will have to go shopping next week and that’s where I fear he might catch the virus.
Sorry, I know it’s me moaning again, but this time I have been so worked up, I can’t even relax, I am not able to let go of this. Today was a bit better because I have tried to limit the time when I look at the news. In general the text message has just generated fear in me.
I am healthy apart of course that I had my last chemo two months ago and so I am still immunosuppressed. At least the weather has been glorious and that always lifts my mood. I am also enjoying having my family around me as I have been so much on my own in the past six months or so.
Take care you all, I hope we can all get through this new challenge together,
I don't know if it differs with different regimes, but when I missed my two (they happened to be Nos. 3 and 5, of 6 in total) I just had those a week later and then continued on and had all 6, just delayed. I also had blood transfusions after Nos. 2 and 4 - the day after the chemo was given - as they were concerned about recovery. I was offered/it was suggested I had a third blood transfusion after No. 6 but I refused and was just told to keep an eye on things and to contact them straight away if I felt extraordinarily tired or breathless. I got through it without having that final one. And, just to say, my tumour reduced from 3.5cm to 3mm during the chemo which then enabled me to have a lumpectomy rather than mastectomy. So, to reassure you, the delays didn't have any adverse effect on the outcome. The whole series ended two weeks later than originally planned, due to the two delays.
My regime was 3-weekly Docetaxel + Carboplatin + Herceptin + Pertuzumab, with Zoledronic Acid at 6-weekly intervals. All those at the same time, each time. I'm now, after surgery and radiotherapy, having 3-weekly Herceptin until the end of August + Zolendronic Acid at 6-monthly intervals for 2 years. Oh, and I've just started the hormone treatment tablets, and the prescription has been given "for at least 5 years". It seems like an awful lot of drugs for an awfully long time - but the alternative doesn't bear thinking about, and the worst bit (chemo) does come to an end.
I hope that's helpful, but it must be worrying that your oncologist didn't know! We all seem to have such different combinations of drugs at different intervals (I never had any weekly ones, but know some on here did). In case it's relevant my tumour was Triple Positive. I found the BC nurses to be much more helpful than the oncologist - they understand how confusing it all is (and the fact that our minds are in panic mode whenever we're being told stuff by the oncologist), and spent time explaining things to me when the oncologist only really seemed to be interested in whether I was coping with the side effects so she could tick them off her list.
Good luck with your treatment tomorrow. It's SUCH a strange feeling to be pleased you're going to have it because you thought it might be cancelled, isn't it?!!! That will be another one done, though, after tomorrow. Stay strong - it WILL come to an end.
Sending big hugs, Julie x
Thank you for replying and i hope you are doing ok.
I hope you get on ok tomorrow with your appointment.
The hospital today was quiet and was able to keep a distance from others.
Hope all goes well and stay safe
Love Daisy xx
So glad your able to have your treatment on Wednesday. I’m sorry I’m not sure about how that works as I didn’t miss any of mine. I would think you would start where you left off but I’m not 100% sure. Hopefully one of the others will be able to jump on here and help out 😘
Just wondered if anyone could answer
My question. I have missed x two sessions of Chemotherapy due to low white cells. My question is do u carry on through the regime or do u start on the ones you missed.
I ask the oncologist today as she didnt know ! Which hadnt inspired my confidence. My WBC have increased so in can have treatment on Wednesday which im pleased about .
Hope you are all keeping safe
Love Daisy xxx
it’s lovely to hear how everyone’s doing.
It is all very worrying and Daisy I totally get that your feeling very anxious about having to go into hospital for your bloods. Iv got my follow up appointment with my surgeon on Tuesday and I’m feeling very much the same about having to go into the hospital.
I agree with you Julie that it must be very hard for those newly diagnosed, I can remember how scared I felt never mind with all this going on too.
Keep safe ladies xxx
Hi Julie and Everyone
Thank you for your reply and support it means a lot to me.
I feel very anxious at the moment due to the virus. I feel scared to go into hospital tomorrow for my bloods and then for the oncologist appt but also feel more afraid if they say my wbc is still to low as i feel that my pain is increasing the last week .
Its such a worrying time for everyone let alone our wonderful Nhs staff working around the clock obviously as well other key workers such as retail staff etc.
Hope you are all keeping ok and staying Safe.
Love to you all
I was very pleased to hear many of you are doing well, even with the few hiccoughs you've sadly had.
Hollyleaf - I've just (last Friday) completed my 3 weeks of radiotherapy. The way the hospital dealt with it changed (although NOT the actual radiotherapy) as Covid 19 became more worrying. During the last few days, the receptionists retreated to their offices and everyone turning up for radiotherapy had to phone on arrival, using a dedicated phone, to book in. There was hand sanitiser and antibac wipes next to the phone, which everyone used before and after using it. And we all stood around 2m apart in the queue - not told to... it just happened as people are being sensible. They also asked that no-one other than us being treated entered the hospital - my husband stayed in the car. You obviously need to be careful, but the staff are 100% "on it". The radiographers also confirmed that radiotherapy does NOT reduce your immune system (at least, not if you're only having on breast(s)). The saddest thing was seeing all the poor NHS workers who are already looking so tired as they're doing long shifts - such amazing people, staying positive and cheery for all us patients. When I mentioned how grateful I was to one of the radiologists she said it was lovely to hear that, as not many people are thinking about the risk staff are taking to continue with our treatments. She had tears in her eyes, but we both stiffened our upper lips and wished each other luck.
Radiotherapy was a breeze for me. I didn't have any side effects, although I'm told they could appear in the next 1-2 weeks. I'm more tired than usual, but it's been so long since any of us have felt 'normal' I'm not sure I can gauge it any more!
Daisy - I had two delays during chemo (a week each time) due to low haemoglobin and platelets. Although I found it extremely frustrating, I think the extra time meant my body was able to heal a bit more so the re-arranged treatments didn't affect me so harshly. And, like you, it felt like it would never be over... but it did happen.
It feels very strange now as I've sort of been socially distancing myself for the last 6 months or so! (I was diagnosed at the end of June last year). I also isolated for the worst chemo days, so what we're all now being asked to do just feels like an extension of that! I'm sure the hand-washing instruction hasn't been too difficult for any of us... since we and our families have already been doing that during all our treatments anyway.
Stay safe everyone. I was only thinking earlier today how awful it must be for anyone who is receiving a similar diagnosis to ours right now. We all know how scary those first few weeks are, and if this virus had been around then I know I'd have been even more frightened.
Stay strong. Lots of love, Julie xx
So my news, I can finally see tiny hair coming through the longer softer and weirdly white hair. The new tiny hair looks my normal colour: hurray! Also, finally eyelashes (minuscule but definitely there) and eyebrows are re-growing. I think my hair growth must be slower than on average but now I can see everything slowly reappearing. It’s such a relief!
I have an appointment with the surgeon to check the results of the second operation on the 2nd April, but I really hope I will be able to do it on the phone. I am fairly paranoid about going to hospital at the moment. I also want to ask about radiotherapy. Is it necessary? It just strikes me that the hospital is, I don’t want to say unsafe, but not somewhere you want to be right now.
Lisa so sorry you had to have your wound drained. I had a very large swelling but it disappeared on its own about 5 weeks post surgery.
I always feel I am fairly behind everyone with treatment but having read that you Wolvesgirl, are six weeks from your diagnosis, made me feel better. I was diagnosed in July!
My warmest wishes to you all and keep safe,
Glad you are feeling better and hope each day u keep improving from the operation. Just rest and stay safe.
Love to everyone
Daisy I’m so sorry you’ve had to miss 2 cycles I know it must be so frustrating. I also totally get how anxious you must be feeling right now with all this going on and still having to go in for treatment. I finished my chemo 2 months ago now and I’m still very anxious about picking anything up.
Wolvesgirl I’m glad your getting there with your recovery from Phnemonia. I think your totally right with not wanting to be front line, you have absolutely gone through enough! Just stay safe!
Thank you Again Shi for the tips about the eyelashes, mine are still only stumpy but there getting there.
stay positive everyone and stay safe
Thank you for your reply. Im a nurse and have Working in the NHS for the last 30 years. I feel so sad that i cant help in this crisis but i would say to you after all you have been through u need to keep yourself safe .
So glad to hear that you have come to the end of your treatment and it really helps to know that there is a end in sight Thank you for sharing . I just feel so anxious at the moment with everything and it feels never ending to get through this chemo .
Take care and keep Safe
Love Daisy xxxx
❤️ If you struggle with normal mascara brush to start with try and get some of the mascara wands they use on makeup counters when they try a mascara on you they are smaller and work well but it will only be a few weeks before they are back ❤️ my beautiful friend from Ysl counter in boots guided me after chemo on how to do liner so it looked like lashes till they came back and when they start to come back get the mascara on to train them to curl up ❤️ so sharing with everyone on here ❤️ Daisy d 👭everyones got you lovely and keep focused, better to have delays and be safe ❤️💕💕✨✨Shi xx
Hope you are all keeping safe during these strange times, especially given that we are still fairly early days post chemo. Daisy - I know you are still going through it so you need to be so careful of yourself. I really hope you get back on track with your sessions and get it all finished - it must be so hard to be cancelled but you know it is keeping you safe. I am in Shropshire not far from you!
Lisa and Hollyleaf - great that hair is on its way back - mine is definitely getting back to normal although I have had to explain my very short hairstyle as I still don't want people to know about the diagnosis. Good tip about the mascara - I didn't know that - I will start wearing it as I definitely have eyelashes now! I had a facial this week which was lovely but now that gyms and leisure centres are closing I think it will be the last for a while.
So my news - continue to recover from pneumonia - long job and still get shoulder pain but its improving I think and I take a lot less analgesia now. I had an echocardiogram on Monday which was OK and the fluid around the heart has reduced so thats good. I have to have a 24 hour ECG this week just to make sure the cardiac function is OK. I am still waiting for an appt with the respiratory team but I think they are going to be a bit busy over the next few months so will wait and see.
I saw the oncologist yesterday - all good - to have my first mammogram in May/June which will be managed by the surgeons and if all OK he said there was no need to have me on long term oncology follow up. So I will have my second Zometa in July (if all back to normal) and then a telephone review jus to see how it went. So effectively discharged! I asked if in the current climate I would be considered a "high risk" from a cancer point of view and he said no. Great news. Its been a long time coming - its 6 weeks until the anniversary of my diagnosis and this tunnel as you all know has been a long and dark one.
So, my latest quandary - I have been asked if I will return to the nursing register during the current crisis. I am still thinking about it but I think I can do admin/control room work but I would be reluctant to be patient facing just in case I pick something up. I don't know if thats selfish but like all of you I have been through a lot and don't want to do something silly now.
Please keep safe - with much love xxxx
Hi lisa and wolves girl
How are you feeling now Lisa ? Hope each day you are feeling better and on the road to recovery now .
Thank you so much for replying to my post. I really appreciate your words of encouragement. Chemo feels such a hard mountain to climb. I have had to miss my 6 th and 7th sessions due to low WBC i was so disappointed as just want to plough through a tick them off to get to the surgery. Its all such a worry with the coronavirus. My hospital is Newcross in Wolverhampton which has been on Tv tonight as the second hotspot county . Ive got blood on monday then ongologist appt with hopefully chemo session on Wednesday fingers crossed bloods have improved.
Love to everyone and stay safe
Love Daisy xxx
Hi Shi! I certainly am but not for that reason as I don’t know it helped with that! 😃 Iv just been enjoying having lashes to put it on again 😂 thanks for the tip I’ll make sure I put in on everyday now! ☺️ Xxx
Hi Lisa ❤️Hope you are using mascara on your new lashes 😁it helps train the lashes to curl up and not grow out straight ❤️ 💕💕✨✨Shi xx
Just thought I’d pop in and make sure everyone was safe and well during these worrying times.
Holly I’m so pleased your second Op went well and hopefully your recovering well from it.
I had to go and have some fluid drained from my scar area.. 350ml to be precise 😆 it had got so big it looked like my boob was back!
apart from that I’m healing nicely and my scar is so neat!
regarding hair mine seems to be coming thick and fast all over, lashes are growing back which I’m delighted about, think loosing them was worse than loosing my actual hair.
Anyway I hope everyone’s staying safe.
big hugs to you and your family’s 😘 Lisa xxx
Paranoia has definitely set in for me! I am 45 but having completed chemotherapy only on January 10th, I doubt my immune system is back up to scratch. Not sure how much to go out or seeing people but at least self isolation is not an issue as I have been doing it since last August!
My second operation went well - I think, I was surprised the surgeon didn’t come to see me afterwards. To be honest I am a bit fed up with it all, but the end is in sight now.
My hair is slowly coming back but it’s still fairly patchy on top, so a bit longer before I can take my hats/scarves off. My fingernails are also looking better and the nail varnish is helping me a lot (psychologically I mean!). So is the eyebrow makeup, it’s a life saver! Unless I have been imagining though, I think I saw some tiny hair back on my eyebrows, let’s hope that’s true!
I hope you are all having a lovely weekend. I also hope they close the schools soon, I like having my children around.
So its Friday again and the world seems to be going mad so I thought a few minutes of sanity and group support on here was whats called for. Have just read that the Premier League has been suspended for a few weeks - I will have one very unhappy husband!
Lisaloo - Hope you are feeling less sore and uncomfy now - do you still have the drain in? You are right about listening to your body - remember recovery is two steps forward and the odd step back - its nothing to worry about, just your body mending.
Spottycotty - sorry you had a bit of a time in the scanner - you made it sound amusing but I bet it wasn't and hopefully you will have had the results by now. It does rather seem that there is always something doesn't it? I naively thought we would all be skipping off into the distance by now having completed treatment. How much longer will you have the integrated hair system? Sounds fascinating. My hair is fine - short but looks OK.
Hollyleaf - Hope all is good with you and you continue to improve. How is the hair growth going?
Blackcat - two weeks down for radiotherapy so nearly there - hope you haven't got stuck in the doors again! Thats not great is it? Hope you are still feeling OK and are not too tired. Do you have to take the bisphosphonates every day? How are you finding them?
Julie - Glad that things are moving on for you - to get the portacath out must have been great!
Daisy - like you I am TNBC but I have had a different pathway as they didn't see it initially and I went to theatre for a WLE for DCIS - it was only on histology that they saw the cancer. So I had surgery first, then chemo and then radiotherapy. You will get through this - it seems such a long journey looking forward but it will go.
So my news, I continue to recover from the pneumonia - still aching a bit but have cut down on analgesia and just taking a couple of brufen a day to take the nagginess away. Mainly my shoulder and my left side which is where my lung had collapsed. It is better than it was. I am still a bit breathless but I can take a big breath in now which is what I couldn't do before. I have a cough but that is improving. I have been out for the odd walk, have driven to the Co-op (whoop) and generally got doing a bit more each day. I am terrified of getting C19 now! We are supposed to be taking the eldest grandson to Liverpool next weekend but we shall see..... I might stay at home.
I seem to have a period of clinic appointments coming up - Dexa scan tomorrow, Echo on Monday and then oncology on Friday so lots to do!
Hope you are all OK - please keep safe, my recent experience shows, I think, that we are not as over the chemo as we might have thought. Much Love xxxx
I think we have every right to be moaning minnies! I’m so sorry you couldn’t have number 6 today.. it’s very frustrating when your counting them down and you just want them out the way.
keeping my fingers crossed for you you’ll be ok to have it next week and get back on track.
Glad to hear each day your feeling better . Its horrible feeling tired but just take it easy as you can .
Im a bit fed up today as my white blood count was to low for me to have my 6th session of chemo .
Just feel disappointed as counting down the sessions.
My daughter is off to Bangor university in September and i just want to be all sorted and well.
Experiencing more chest pain today too which isnt helping.
Sorry to be a moaning minnie !
Sometimes it just feels never ending.
Sending you lots of good wishes
Love Daisy xxxx
I’m glad I’m giving you some reassurance 😊 I hope you managed to get your 6th cycle out the way today.
Im feeling ok today, movement and pain seem to be getting easier as the days go on. It’s just a strange and uncomfortable feeling really. The tiredness still keeps coming over me. I don’t think Iv ever fallen asleep sat up until now 😂
anything else worrying you or you need advice on please don’t hesitate to ask.
Thank you for replying and sharing your experience. It makes me feel more reassured that what im feeling is normal.
How are you feeling today ? I hope your pain is better and that you gain more movement as each day goes on.
Im due to have session 6 tomorrow but the hospital has rang to say WBC is low so will need bloods to be retested in the morning to see if can go ahead.
Havent felt to great today due to numbness in left heel so difficult to stand. ( This happened a couple of weeks ago too. Keep trying the ibuprofen gel )
Just so up and down each day.
Sending you all the very best wishes
Love Daisy xxx
I know exactly what you mean about just wanting it out of you and the worry of if it’s shrinking or not. The thought of it in me i struggled with so I don’t think your alone there.
I’v an appointment with the plastic surgeon for reconstruction at the end of August. I was offered immediate reconstruction but couldn’t get a date when both my surgeon and the plastic surgeon could be together at the same time any time soon. They wanted to get the mastectomy done so I will have reconstruction done at a later date.
After my mastectomy i stayed in for one night. I could of gone home the same day if they were happy for me to but I asked to stay in for one night. Just because I felt more comfortable being where I could be looked after as I’d never had an operation before if that makes sense.
All of these things your feeling and worrying about are totally normal. We’re all here to help each other along this **bleep**ty journey.
😘 Lisa xxx
Thank you for your reply. Sorry to hear that you are feeling tired and uncomfortable. I hope each day u start to feel better and pain gets easier.
Thank you so much for all the information its so so helpful to me.
My tumour is 5.6cm x 4.8 cm .
I will keep drinking with EC treatment Thank you . Im having to have 4 cycles of Ec every 2 weeks and will keep taking the anti emetics too.
Did u have any reconstruction surgery ? Or was it an option ( sorry if that is to personal to ask please dont feel u have to answer ) . Did u have to stay in Hospital?
I was just not sure what to expect as no one has said what will happen at that point apart from more than likely mastectomy unless it shrinks they may be able to do less surgery but i just will have what ever i need to get well again and be pain free.
Just find it so hard psychologically to keep wondering if its shrinking ????
I cant feel anything and never felt a lump etc in the first place. Had a recent Chest xray as i had a bad cough but luckily it was clear so could get on with the Chemo.
I just struggle to enjoy having a bath now as i just want it out of me if that makes any sense.
I feel like every day im just waiting to have the surgery really. Did u feel like that ?
Sending you a hug
Love Daisy xxx
Its no problem at all, I remember having all the same questions in my head that I wanted answering, it’s all very scary and so much unknown!
Im feeling ok thank you, tired and uncomfortable and the same as you I’m climbing the walls! Everyday is getting easier with regards to pain and movement though.
So with the Chemo I had the EC first and I’m not going to lie to you I found the paclitaxel easier than the EC. Saying that the side effects were kind to me and I didn’t really suffer with sickness all the way through. I just found the EC gave me more of a fuzzy head. Are you having the EC very 3 weeks? Make sure you drink loads of water!
Once I’d had my 4 cycles of EC i had an ultrasound scan to check progress and yes it had shrank it, so much so that they couldn’t really see anything. They then carried on with the 12 weekly cycles of paclitaxel which I finished on the 24th January. I then had my surgery on the 4th March (last week)
The choice of surgery is much the same as the chemo.. no one has to have it if they don’t want it. But yes it is needed to beat this. I had 2 tumours one 22mm and one 8mm so a lumpectomy wasn’t an option that’s why I had to have a mastectomy.
Hope thats all been helpful for you Daisy..Anything else please just ask away.
Thank you so much for replying to me it means such a lot .
How are you feeling following your surgery. ? I hope you are recovering well and every day is a better one.
My diagnosis came as bit of a shock as i was being treated for chostocondrotis for 3 months due to the chest pain and it was only to rule everything out by chance i was referred to the Breast care service. I was not due to mammogram etc as im 48. It was then i was diagnosed with TNBC grade 3 with 3 lymph nodes affected. This is why im experiencing the pain as the tumour is pressing on the nerve in my chest. Life has been difficult as im usually very independent looking after my two children and working but ive not been able to get out of the house properly( the odd pop to local shop ) since October due to chest pain and shortness of breath. Im climbing the walls with boredom!!
I started chemo on 4th February.
Ive had a few different side effects on the Paclitaxel and carboplatin. The main one being indigestion/,excess gas and stomach cramps. Ive got next chemo on Wednesday .
Could i please ask if u dont mind Lisa.
When did they scan to check Progress? Did your Tumour Shrink with the regime?
How did u find EC in comparison with the Pacitaxel?
Did u have a choice of surgery?
How long after finishing Chemo did u have your surgery?
Did u have Filgrastim injection if so did u have any Side Effects ?
My apologies in advance for the millions of questions and i wish you a speedy recovery.
Love Daisy xxxx
Sorry you find yourself on here with us all. My diagnosis was also triple negative Iv had 4 cycles of EC that was given Every 3 weeks and then 12 weeks of weekly paclitaxel. Iv just had a mastectomy on Wednesday last week.
Like you when I first started my Chemo back in August I thought the end seemed so far away. I can honestly say for me it’s gone so fast..Just get through one at a time and try not to think to far ahead. Once I got past half way I started counting down. How have you been with the paclitaxel so far? Any questions about anything please don’t hesitate to ask I remember only to well how I felt at the start of all this.
Hi lisa and everyone
My names Daisy and im just going through the chemo stage i was diagnosed in Jan with Tnbc 3 nodes involved. Im currently have paclitaxel and carboplatin on a weekly basis then Changing to Ec for four weeks . Then surgery . Im just wondering how you are all doing. ? Im just struggling at moment to see an end to the chemo ?
Any advice would be greatly received.
Love Daisy xxx
Spottycotty - So sorry to hear about your experience during the bone scan. I can understand how worrying it is, but your team is obviously being very thorough and making sure that you are being fully checked out. Scans show up all kinds of things, such as previous minor injuries to the bones, so hopefully anything that they have seen will not be of concern. I will keep my fingers and everything else crossed that it turns out well for you. Please let us know how it goes, as we will all be thinking of you.
Wolvesgirl - What a horrible time you have had: a hospital stay is the last thing you deserve after the chemo and all the other treatment you have been through. It’s good to hear that they have found out what was causing the pain, and that you are now getting the right treatment and follow-up. Make sure that you take things easy, and I hope that you are soon fully recovered.
Hollyleaf - It’s good to hear that you are getting your arm movement back, and also that you are feeling more positive and getting rid of the last of the chemo symptoms. I think it’s definitely true that you are over the worst of the treatment now - as many others on the forum have said, I have found that the chemo is the most challenging, then the surgery, with the radiotherapy much less of an issue.
Lisaloo - So pleased to hear that the mastectomy went well, and that you are feeling OK. It is another big milestone achieved in the treatment journey. Take it easy, and I hope that you will have a speedy recovery.
JulieME - Good to hear about your clear results from the colonoscopy, and also that you have had the portacath removed. I hope that the eyelash problem improves soon - I had the same issue with a few remaining long eyelashes which drove me mad, but they very soon dropped out, to be followed by a set of full set of short eyelashes which are now almost at normal length.
My news is that I have had my first week of radiotherapy at St James’ in Leeds, and that it has been fine. The treatment takes only a few minutes each time, and I have not had any skin reactions or other side effects. I am travelling there by train after work, which is not too bad as it only takes 23 minutes (plus about 10 minutes by bus to the door of the radiotherapy dept). Luckily the trains are not busy, as I am going in the opposite direction to most commuters. The only drama I have had is that on Tuesday my treatment was delayed by 40 minutes as a machine had broken down, and when I tried to leave the dept at about 6.35pm, I managed to get stuck between two sets of doors that had locked automatically behind me. I could not get a phone signal as the corridor was below ground level, so wondered if I would be there all night. Luckily a cleaner came along after about 15 minutes and released me. When I told the radiography staff about it the next day, they were very apologetic, as they are meant to accompany any patients still there after 6.30pm to the exits, and to let them through the doors with their pass. Hopefully it won’t happen again! Other than the radiotherapy, I will have my third post-surgery cycle of herceptin/perjeta infusions next Thursday (cycle 7 of 18 in total), and am getting used to the morning routine of taking the bisphosphonate tablets. I have to do anything which involves bending - such as pet feeding or taking in the milk - before taking the tablet, then stay upright for an hour, while remembering not to eat/drink for 30 minutes. I am really missing my early morning espresso, but I make one as soon as I get to work and so it is not too bad. I am still really enjoying being back at work, and so far am not feeling tired (although I know that as the radiotherapy progresses, tiredness is a likely side effect). As I have 210 hours of accrued leave to take, I guess I may use some of it if I get tired over the next two weeks.
Love and hugs to everyone,
Oh no, so sorry to hear that. The thing is, whatever it might be is so much better that you are looking into it. If it something it’s better investigating than not knowing and feeling the pain/numbness.
Throughout my journey, and I am sure it must be the same for most, I have noted so much more any niggles or pain - it’s just made me a lot more aware of little things but at the same time more concerned. I think this is natural though, and cannot be avoided. You all on here have taught me that accepting what we are going through is better than worrying about it.
And if nothing else, we are definitely here to listen.
Hugs Spottycotty, I hope you find out soon,
Wolvesgirl 😳 wow..
Sounds like you’ve been having an awful time with it all!! So glad you’re in the mend now but I bet it’s been awful.
Good that you’ve ditched the wig, I had my hair redone the other day, when she took the system off I was amazed at my hair growth to be honest!!!
Lisaloo, glad your op went well and you’re reasonably comfortable considering, as you say, that’s another bit done!
As for me, I’ve been for a bone scan today, they were just starting the machine up and I stupidly opened my eyes to see the plate cm’s from my face, had a hot flush, freaked out and said I needed to take my jumper off so they to restart the machine!!! Oops!! Ha ha!!!!
deep breaths were required!!
Anyway, as the machine slowly went over my body I could see the X-ray image on a screen and I swear I saw a white mark on my spine .... don’t want to over react and I can’t read machines one little bit but it was there.
So they scanned my body, my ribs from each side then she came over and said she needed one last image of my right elbow!! She did that then said I was finished, I asked her why they needed to do that and she muttered that she had seen something, she wasn’t allowed to say anything though but needed another image of the area for the consultant to see 😳 she mentioned that it could just be a fracture but she can’t say 🙄
so now I’m silently panicking and feel a bit down in the dumps that this might not be over for me ...
i ave been having numbness and pain at night in my right hand,waking 4/5 times a night with it and it sometimes goes a bit numb in the day, it feels like a nerve is trapping, so now she’s said that to me I can feel it all the more!!! Haha.
bloody nightmare, so I’m back on the dreaded wait for results, timescale unknown!!!
Anyway, thanks for listening to me ramble on xxxxxxxx 😘
Hi Holly, wolvesgirl and all other ladies.
So sorry to hear of your past 10 days wolves girl..it sounds awful! Glad to hear your on the mend now!
Holly sorry to hear you have to have a second surgery, at least you know what to expect this time and hopefully your recovery won’t be to long.
I had my mastectomy on Wednesday, I stayed in 1 night so got home yesterday at about 1pm. The whole process wasn’t as bad as I thought and the last thing I can remember is the canular being put in and a strange feeling up my arm then nothing until waking up in recovery saying how hungry and thirsty I was! 😂
I’m feeling fine in myself just sore and uncomfortable.
Been very tired and sleepy today so just listening to my body and resting. So glad this part is over with. Another stage over with!
Big hugs to everyone
It was pretty awful tbh, but I am always amazed by the care given by my nursing colleagues in challenging circumstances and it was no different this time. I felt safe and supported especially by one of the acute oncology team who went above and beyond to support me. The bay I was in was interesting! A 91 year old who mercilessly manipulated her family and was as sharp as a tack, a lady in end stage respiratory failure who spent most of the outside smoking (!) and a very big lady whose behaviour was, at times, appalling. I just put my headphones in and turned the volume up!
So pleased everyone is moving on. I have ditched the wig - just couldn’t be bothered with it in hospital. It’s still very short but looks ok.
thanks for your support
So sorry, that sounds awful!
You sound so calm in your account of the days, I am sure they must have been so stressful. Sending you warm hugs.
I am feeling more positive today after all the reassuring messages from Spottycotty, JulieMe and the others. I think it’s also because my fingers are no longer painful, my fingernails are half decent and I feel a little more energetic now I am 8 weeks (already!) post chemo. I do hope it’s all going to be easier from now, although of course I haven’t even started radiotherapy!
Having said that, there aren’t any signs of hair for me yet, except for some hair on my head which is definitely coming back (not so much on top, more to the sides and mostly white!!).
Please do write if that helps, I cannot imagine how awful that must have been for you!
So sorry to have been a bit quiet for the last 10 days or so - its been a tricky time! More of that later. Good to hear all your news - Lisa, how has the surgery gone? You are three days post op now I think and I hope that you are doing well. Hollyleaf, sorry that you have to have another op - same happened to me as they were not expecting cancer so had to go back and do the lymph nodes. Still, at least this time you know what to expect and it will be much easier without the drain. Blackcat - how has your first week of radiotherapy gone? Spottycotty - keep your manager at bay - I cannot believe you should be back on the wings just yet. Having visited nursing staff in the local prison when I was working, I know how tricky your job can be. Julie - well done on retiring. It really is great, or at least it was before all this started, and I am sure you will enjoy it.
So, my news. As you know I was struggling with pain and ?gastric irritation possibly due to the Zometa which I had on 05 Feb. Last Wednesday (10 days ago) I woke early feeling dreadful as normal and took my temperature - 39.8! Nearly fell out of bed. Cut a long story short, rang 111 and ended up in ED where they did a chest X Ray that showed that most of my left lung was being compressed by a pleural effusion. 14 hours later I ended up on AMU (not the most restful environment but better than ED) and then went to the Respiratory ward where I stayed for the next week. On Friday I had 900mls drained from my chest which immediately provided some relief in that I could breathe but caused quite a lot of pain as everything was moving back into place. That has eased now. The upshot of it all was that I had pneumonia probably picked up because I am still vulnerable from the chemo and the effusion was an inflammatory reaction. There were an anxious couple of days whilst they checked to make sure there was no sign of spread - had a CT and they sent off samples of the fluid - but I am pleased to say that there is no sign of that. So on the road to recovery now. It was suggested that I had done too much during radiotherapy which I accept - maybe zumba not my best idea! I have a whole list of appointments - I have an echocardiogram in a week as there was fluid around my heart too, next Saturday I have my dexa scan and then my end of treatment appointment with the oncologist in a couple of weeks. I also have to be followed up by the respiratory team in 4 - 6 weeks. Just as well I am not working! So thats my news - sorry its such a long post. Keep safe everyone, much love xxxx
sorry I’ve been absent, I did a long post the other week but I didn’t realise it didn’t submit properly! Never mind though.
ive had a quick read through while I’m watching the kids trampolining and thought I’d check in.
sorry to hear you’ve got another op looming Hollyleaf, I find it interesting though, I got my pathology report back which says I had clear margins of less than a mm !! What even is less than a mm?!? I asked the consultant about it and he said that my tumour was small, I’ve had a lumpectomy with clear margins albeit small (!), chemo because the tumour was Aggressive basically saying if it wasn’t triple negative I wouldn’t have had chemo, 15 rads then 5 boosters. He says I’ve been adequately treated and not to worry!!!
I mentioned the rib pain I’ve been experiencing and he’s referred me for a bone scan which is on Friday. He did say that he’s pretty certain it will come back clear though, at least he’s listening to my concerns.
Glad we are starting to return to work (or retiring 👏👏) although I’m sorry to hear you’ve been unwell Wolvesgirl.
My fingernails are starting to fall off now, I swear I look dead underneath my nail varnish!!! I’m back at work on restricted duties as I’m a Prison Officer, so I’m office based for the time being, my boss asked me the other day when I will be able to take my fitness test though, told him to back off, I pointed out that if I looked as though I’d had cancer (I don’t as I’ve got a hair integration) then he wouldn’t dream of asking me that yet! He looked suitably embarrassed as he should do!
Anyway, take care everyone xx
Thank you so much for the encouragement. I am just starting to have a better arm movement, so I do hope it heals quickly. The prospect of another month of the ‘army’ bra (!) does not fill me with joy! The nurse said I should keep the dressing, which cannot be wet, for 2 weeks. So no showers again!
Anyhow, I hope I will heal like you. Meanwhile I hope everyone else is enjoying the weekend.
Thanks Hollyleaf, that's very kind of you and you'll be in the same position as me (not retirement but socialising more) before you know it.
Just wanted to mention: I had to have a second operation too (they hadn't taken enough healthy tissue from around the tumour the first time). As your surgeon said, it's a MUCH smaller operation - my surgeon re-opened the existing wound as well - and it healed REALLY quickly (much more so than the first op). I agree it's daunting to have to go through the process again, but it's better to be sure... and it honestly was very much easier to recover. I believe it happens in 1 in 5 cases, so we're not alone! Will be sending positive vibes on the 10th, and you'll also be sure it's the last time you'll have to be there. Long road, but there IS an end to it!
Love Julie xx
Dear Lisaloo, JulieMe, Wolvesgirl and all,
JulieMe, congratulations on retiring, it must be a nice feeling coming nearly to the end of treatment and having time to socialise. And well done on getting rid of the portocath, I dreaded having to have one of those and managed to avoid it.
Lisaloo I really hope your operation goes well. I found the encouraging words and advice (on what to take, but also what to expect), really great. I found having my family around and going out the days before made me calm and relaxed. It totally worked!
Sadly the surgeon said I must have a second operation. I was really disappointed on Thursday but I really cannot avoid it and the end result is what matters. He said it’s much smaller, still a general anaesthetic but he will only open part of the wound and I will have no drain. Also, I will go home the same day. Wish me luck, it’s on March 10th.
That however also means that radiotherapy will be pushed a month back. I guess it’s more time for my body to recover post chemo.
Stay warm this weekend, we have lots of football matches to attend with my children!
Love to all,
Hi all - apologies for going "missing" for a couple of weeks. I've been really busy!
Good luck for next Wednesday, Lisaloo. I was going to suggest you may prefer to have the mastectomy first and reconstruction later, as that's what I was going to opt for (my surgeon said he could do that, although he does breast surgery AND reconstruction so there wouldn't have been a need to get two surgeons together). But as it turned out, I only needed a lumpectomy in the end so decision not needed.
Sorry to hear about your problems with Zometra, Wolvesgirl. I'm assuming that's the same as Zoledronic Acid? I've been having that at 3-monthly intervals at the same time as chemo, so could never tell what was giving me what side effects. I had my first Zoledronic Acid on its own on Thursday last week, and didn't really experience any noticeable side effects so it sounds as if you've definitely had a reaction. Such a shame, but perhaps there's something similar that might be better for you?
Like others, I kept my eyebrows and and eyelashes throughout the chemo - only for almost all of them to fall out about 3 weeks after my last treatment! They've started growing back now, but mascara is a no-no as it really shows the stubby ones against the (probably 5 in total) long ones. I'm quite tempted to pull the long ones out! As I was able to have the cold cap throughout chemo I didn't lose all my hair, but it thinned to about 50% of what it was and the 'ice' damaged what I did retain and made it frizzy. The new growth is now about an inch long, so I've had the existing (longer) bits styled so it doesn't look quite so mad! All coming through grey, and I think you have to wait 6 months before you can use colour. I might stick with the grey though, as I quite like it and it will save a lot of faff in the long run!
I've been at the hospital this morning for a colonoscopy (something they couldn't identify from my baseline CT scan had to be investigated) which was fine, although the 'Moviprep' - which completely empties your bowel - that I had to take yesterday was anything but pleasant. I must admit I feel like most areas of me have been violated now! They gave me the results straight away, and it was great to hear there's nothing to worry about.
I turned 60 last weekend and also retired! So I was back for a leaving do on Wednesday last week - it was lovely to see my workmates but, for me, I want to use my precious time doing things for myself rather than spending it at work. I'll be keeping in touch with work friends, but only socially in future.
I also had my portocath removed from my chest last week - lovely to get rid of that! My ongoing (until August) 3-weekly Herceptin injections are going into my thighs so I don't really need the portocath any more... although I do wish I'd kept it for the Zoledronic Acid on Thursday.
I start radiotherapy next Monday, and have already been 'marked up' for it. I think it's going to be the travelling to and from hospital every day that will be more of a problem than the actual radiotherapy (fingers crossed) from what others have said.
It feels like I've hardly been away from the two hospitals I have to go to over the last couple of weeks - a bit like all the tests before chemo started.
It's great to hear everyone's updates. Keep up the good work, and do let us know how you get on. Nearly there...
Just an update from me. So I’m booked in for my mastectomy this Wednesday 4th 😬 had my pre op assessment yesterday. I am so nervous but keep calming myself down with the knowledge that you ladies have already been through this Part and have offered reassuring words.
Holly was it Thursday you were seeing your surgeon after your surgery? Hope all is ok now with regards to your swelling.
im still eyebrow and eyelashless but I’m sure Iv got the tiniest of hairs starting to come through.. the hair on my head on the other hand is growing like wild fire... albeit grey and fuzzy 🙄😂
hope everyone is well.. looks like we’re in for yet another storm this weekend!!