sorry I’ve been missing, I couldn’t get on for some reason it kept saying my password was wrong, so sorry to hear some of you are having one nasty side effects, since my treatment leaves have been reduced after the really nasty infection I had the first time I’m coping much better, just really fatigued n bloat for the first 5 days but then get back to a fairly manageable routine, love the the wig from amazon n what great value and it looks good too, could someone please share the feel good look better link again, I want to pass it to a lady at the hospital, halfway there now 3 done n 3 to o, got a meeting on 20th Sept to talk about radiotherapy Treatment plan, hope we can all make the best of the next round of nice weather that’s meant to becoming our way, and that some of you manage to get away again, let’s pray for better days for all us us xx
@Impatience , @Trowster , hope you ladies are doing ok and not suffering too much. Apologies if I have missed any one out.
Love to you all. xxx
@GonnaGetThruThis – I'm so sorry you have been suffering but it's great to hear you have turned the corner, my husband describes my treatment as like being on a roller coaster I go up and then crash down, only to go back up again! Having a bath when I was feeling really awful was so nice, so I understand exactly what you mean. Your daughter sounds very special, helping you with your hair and around the house. Our husbands are amazing aren't they, I definitely wouldn't have got through this without mine.
@Flower123 – So sorry to hear you have been poorly. I am glad to hear that the latest treatment in being kinder to you. I have always had 7 day of injections, so am quite surprised to hear that some people are only being given 5. It's amazing when you finally want something to eat isn't it? I'm so glad you got to enjoy your Pork Pie.
@JessicaB - You look lovely Jessica, I do hope you are staying well, I love the photo of you with your dog too! Thanks for the recommendation for the non alcohol wine, like you I am not normally a fan, but I might just give it a go, as you say nice for something for a change.
@Mum2boys – I am sorry to hear that have been experiencing gastric issues too. I hope the reduction to your treatment helps. It was good news to hear that your MRI shows the tumour was breaking down and I hope that you were not too sore after the placement of the clip markers. I think it is natural to have days when we give in to our concerns about the future. As Louise65 has said previously we cannot stay positive all the time, but hopefully with each others support we can give each other the love and support to get through this treatment and come out the other side. The tips about hand cream and nail varnish are great. I too would like to recommend Amazon for wigs, I haven't been well enough to get to my wig shop yet, but we had a funeral to attend this week and I did not want to go with just a headscarf on, so I took the plunge and ordered a cheap wig off Amazon, it only cost £17.02 with next day delivery and I have to say I was pleasantly surprised. I have added a photo to my first post if you want an idea of what it looks like.
@Louise65 – I hope you are coping better after your new treatment. Your chutneys and jams sound wonderful, I am truly amazed at how you are carrying on despite all you have been through. I struggle with extreme tiredness and lack of appetite to, so much so I lose an average of 6 kg whilst I am going through my treatments, but usually manage to put most of it back on once I start eating again, so I really would love to be able to get out in my garden and start to be more self sufficient in terms of growing fruit and veg, but just don't have the energy currently. In terms of the mouth thrush are you able to get a mouthwash from your team? I have had one since my first treatment and use it twice daily every day, though if my mouth deteriorates during my treatment I can up it to four times a day. I also bought an aloe vera toothpaste and brush with that twice a day too, so far whilst I do have the odd mouth sore overall the two together seem to work well. In relation to your questions about audio books, have you tried your local library? I worked in Libraries and we had an app called Borrowbox which you could select book titles for download including audio. It was especially good during the lockdown as you could access booktitles without having to leave the house.
@Heels to walking boots – I am so sorry your bloods have been low, I was on the IV suite on Thursday and Friday and was amazed by how many people were having to have platelet and blood infusions. I do hope that yours improved enough for you not to need them and that your treatment went well on Friday. How amazing that your daughters were so supportive and what a lovely thing to donate their hair to Princes Trust. I quite agree that this journey is emotional is so many ways, we worry about the slightist thing. I decided after my first treatment that I need to put my trust in my team, the doctors are specialists in their field and I know they are trying to do the best for every one of us, whilst at the same time making the treatment bearable and ensuring that we come through it without too much trauma. Just as a matter of interest how often will your paclitaxel treaments be?
@hopeful1974 – I'm sorry I didn't wish you well for your treatment, I hope you are feeling well and not getting the nausea that you got last time. Like you have painted my nails with a lovely dark blue rimmel nail polish called moonlight magic, I was also interested to read you are having problems with your fingertips, mine do go numb at the tips but I don't have the peeling skin on my hands, just on one foot! Though I do use Aveeno hand cream for Normal to Dry hands after using it I do lose a little bit of the dryer skin on my hands but overall I am very lucky by the sound of things. I never thought to buy the gloves and boots for my feet, but I think I would have been too cold if I had. I know you have said before you only have 5 injections, I have seven and this time it was only after my last one that my neutraphils had returned to normal, so I think your team should consider giving you the extra ones to avoid having to delay your treatments. It's wonderful news that your son got such good GCSE results, it must have been quite a worrying time for you all given the disruption to his education during covid.
@Fairie – We are having the same treatment and I'm so sorry that like me you have been suffering, I too have had gastric issues but my Oncology team have reduced my dose to 80%, if yours haven't they I would definintely ask if they can. The also changed my anti-emetics, lowered my dose of Lansoprozole, I take 15mg every day until my stomach starts to feel better, then I stop them, if I still get a lot of reflux and bloating I take gaviscon at the time and restart the lansoprozole for another couple of days. When I had diarrhoea I found that taking 2 loperamide completely stopped my bowel movements and I ended up having to swing between laxido and loperamide, so I was advised to just take one after the first bout, I still found this too much so I would leave it till my second bout and take one. Though I still seemed to block up, so I asked my Oncologist if I could use shop bought Immodium and he said yes, as I have only had diarrhoea due to the magnesium drips this time I haven't taken any meds other than lansoprozole and magnesium chewable tablets and my anti-emetics this treatment. Taking on fluids has been a major issue for me as I felt so sick, but by managing the sickness better this time I have been able to maintain my fluid levels better too, but my biggest problem is the lower magnesium levels, these on there own can add to your nausea and general discomfort, I would definitely ask them for your blood work results and see where your lowest points are. I do so hope that your team will try and resolve this for you so that you can continue treatment to get the best outcome. Please don't feel you shouldn't come on here with negative views, we are all here to support one another, we all have different issues and experiences so just be expressing them on here we can get other peoples ideas and suggestions which may help.
I've started to post a few times over the last few days, but there is so much to catch up on!
Firstly I am doing ok. This treatment, although hasn't been without it's trials, overall has been the best yet and if I have to cope with another three the same I know I can do it now. I started out really well, with the help of my additional steroids and cyclazine I managed my nausea by taking everything straight away, but only my top up levomepromazine once, as it made me so sleepy I nearly wet the bed! Luckily I managed to get myself up and to the bathroom just in time, but I decided after that I would rather suffer the nausea.
However, I have had to have weekly blood tests because of my very low magnesium levels and despite being on 2 tablets a day since before my treatment once again my levels dropped, so they upped my tablets to six a day the second week, but my bloods didn't show enough improvement, so Thursday and Friday just gone I had to have 2 lots of magnesium via a drip in the IV suite, one each day, unfortunately that has resulted in diarrhoea and I'm now back on the tablets for the weekend, so not sure what will happen if my levels are not increased enough, as I'm due my fourth treatment again on Thursday. Have to go for another blood test tomorrow and of course one on Wednesday in readiness for chemo on Thursday, my oh my but I do feel like a pin cushion, and unfortunately it meant that we haven't been able to get the few days break we ususally get the the caravan. But. the great things is I am now over halfway through. Incidentally haven't had chance to go get a wig fitted to I took the plunge and bought a really cheap one off Amazon, pic below!
@Louise65 I have Lorazepam prescribed by oncologist which help to combat the effects of the steroids. I slept ok last night but think I dozed rather than slept deeply. I use Audible, which is £7.99 a month but I think it is worth it. The only problem is that I miss half of the stories as I do tend to doze off with it! Still, if it gets me to sleep or doze, it is doing the trick. Others may have free audiobook recommendations. BBC Sounds has podcasts which might be good. I also use the Calm app which has some sleep stories. I haven’t tried Headspace yet but I see a lot of people recommending it. I hope you find what you are looking for! I usually find I sleep better once the steroids are finished. xxx
@Fairie so sorry to hear your having a rough time and please don't feel bad about posting it on here we all have bad days, weeks. This is the one place we truly understand how awful what we have to go through. Hoping you can get something sorted Tuesday.
Does anyone use a free audio book app I'm after recommendations. Last night it was gone 1.30 before I got to sleep then was up every hour too wee so I'm shattered today which is annoying as yesterday pottered in garden and felt so good for it.
Hoping everyone OK.
Thank you for your encouraging understanding words.
di you know what? I use senakot to help with both constipation and loose bowels.. you can get both types of senakot to treat both issues. It’s more gentle I find.
Sending feel better wishes to you all...
much love and thank you for helping me 🥰
@Fairie I'm so sorry you have been struggling so much recently. The side effects of the chemo can be so awful. I'm sorry that it has been so nasty on your digestive system. I really hope they can help you with this at your next oncology appointment and that you can come up with a plan that helps you. As been mentioned, please don't worry about posting when you're feeling negative - we all feel that way at times. We're only human. Thinking of you Xxx
@hopeful1974 thank you so much for those nail tips. I will look at getting a really good hand cream then. Thank you.
My digestive system is all over the place too. I gained 3kgs in 3 days from fluid retention and constipation (sorry TMI!). It's so horrible. I'm so conscious of my weight and my flushed round face. I take omeprazole every day to help with indigestion but the bloating is horrid. I've taken a metoclopramide this morning as it apparently helps with GERD symptoms and gets things moving from your stomach to bowel but I've been reluctant to take up til now as it made me so drowsy and lacking in energy last time I took it. But I'm getting desperate now! I'm just juggling side effects!
Thinking of you all today and hope you have a good day xxx
@Fairie I had one positive lymph node but they didn’t know that until I had them biopsied during my mastectomy operation. Because they found that one positive node they then proceeded to remove all the other nodes under that arm and fortunately no more were positive. Before the mastectomy, they didn’t have any indication that any were positive, although I had no scans such as MRI or CT. xxx
Thank you Sian
your words have really helped me!
May I ask if you had any nodes affected?
I am also on docetaxel and carboplatin. And the two Herceptin drugs P and T.
@Fairie I am so sorry to hear this. I got to exactly that point after my third EC, which was really awful for me. I just felt like I couldn’t carry on. My team organised for me to have the surgery next, which gave me a break from chemo for about 12 weeks in all. That helped me feel so much better. I regained all the weight I had lost on EC and was then in a better place when I had to resume the chemo in June. Fortunately, I have felt ok on the TCHP, although I am on reduced doses (80% of Docetaxel and 50% of Carboplatin). I don’t think those doses will go up again as my neutrophils don’t recover enough each time. I wish you all the best in your discussion with your team. I was pleasantly surprised that they were able to change my plan (I was due to have all the chemo upfront). Ask all the questions you can. Also, if you did need chemo after the op, ask if it might be a different one or if they can adjust the doses for you.
Huge hugs and please don’t worry about posting anything negative. We are all here to support each other. Siân xxx
Hi @hopeful1974 and everyone 🤗
Thank you for thinking of me. I appreciate.
I have felt pretty low and didn’t want to put anything negative on the forum.
I have had three chemos out of what I was told would be 4-6 and I don’t feel I can cope with more. I’ve been pretty bad.
ive been weighing everything up ie my lymph nodes look clear on mri and ultrasound, ct and bones clear and happy to continue with Herceptin, have surgery and radio therapy, but with the chemo my digestive system feels stripped raw and the pain and side effects has been / is so horrid. I’m struggling.
I have an oncology appt on Tuesday to discuss all this.
I send my love to you all
Fairie ( Sharon) xx
@Mum2boys I have another important tip for Docetaxel. I would use a thick moisturising cream on your hands and fingertips in particular. Apply it each time you wash your hands. Mine became very inflamed and started peeling etc. and the cream really seems to help. I wear gloves if I am doing any tasks which involve using my fingertips much. I think that if I had been better with the cream and gloves from the start I could have prevented some of the soreness. I was recommended Udderly Smooth cream but I find that Neom Perfect Night's Sleep hand balm is the best for me.
@Louise65 Hope you are feeling well today. I woke at 04:30 and eventually managed to doze off a bit by listening to my audiobook. Once I had showered, I felt better and just had a nice walk with my daughter. I do find that gentle exercise seems to help. I will probably flop on the sofa this afternoon and watch a film or something. I find that I crash after I have finished the steroids and then am much more sleepy for a couple of days.
Hope everyone else is ok. I haven't heard from @simplyeve or @Fairie for a while (my fellow TCHP ladies). I do hope you are feeling ok. Love to all, Sian xxx
@hopeful1974 Glad your OK after your long session.
My appointment was 1pm and we finally got home at 6.45pm. They were concerned as I kept having awful hot flushes and was so tired. But I did have long chat with one of the nurses about how I'd struggled after final EC she put my mind at ease about the new drug. I asked about my bloods and they were much lower but the consultant had seen them and was happy to continue. My neurophils were 3.32 before and this time only 1.82 so no wonder I hadn't felt good.
I have slept on and off but wide awake since 4am. I only have 3 days of freedom before isolating again so hoping I can get out before Tuesday even if just to the shop.
@Mum2boys I made 2 chutneys, beetroot pickle and gooseberry and apple jam. I still have other fruit and veg to prep but we need new fridge freezer so running it down although my 2 freezers in garage are full of produce lol.
Hope everyone has good weekend.
Love Louise xx
@GonnaGetThruThis I am finally home! I had to wait for 3 hrs longer than I should have. Anyway, the nurses were lovely, I had a little nap and enjoyed my tea. I even managed a tricky sudoku which helped pass quite a lot of time!
I am feeling ok now. I hope you all have a good weekend and that the others who had treatment today feel ok too. xxx
oh no @hopeful1974 i certainly hope that you didnt have to wait too much longer. i had to wait an extra 90 mins past when i was supposed to start on cycle 2 as the meds were running late and that felt long enough. i know we have to be patient etc but still it is annoying. fingers crossed you have a 'good' first evening.
I’ve been on the chemo ward since 11am and still here as the pharmacy forgot to make my Carboplatin! I am comforting myself with custard creams and a mug of rooibos tea!
@Mum2boys I have not used them today in the end as I did not feel warm enough! I’ll let you know if I get a lot more neuropathy this time round. It will be an interesting experiment. Xxx
That's really helpful. Thank you so much @hopeful1974 .
I will have a look on Amazon then!
Thank you so much xxx
@Mum2boys Oh yes, I have had my nails covered in black or dark blue over the past few weeks and so far have had no discolouration. The oncologist said it was a good thing to do. I also try wearing iced gloves and booties which I bought off Amazon (similar principle to the cold cap) to try and prevent the neuropathy but not sure how effective they are as they seem to defrost as soon as I put them on! (It has been very warm for each of my treatments). xxx
Thank you @hopeful1974 . That's really good to know. They said that's a common side effect re nails/neuropathy.
Did you try painting your nails a darker colour by any chance? I asked the chemo nurse about it and she said she's not sure about the effectiveness of it but will hide discolouration and won't hurt to try. Just wondering if it actually works!
Thank you xxx
We know that you are facing this situation unconditioned for you but there is hope to overcome from this by increasing will power.
@Mum2boys glad to hear you are not feeling too bad. I am on Docetaxel along with Carboplatin and two targeted therapy drugs, so it is difficult to separate out the side effects, but overall I am very much able to function most of the time and definitely haven’t had any days just lying in bed (although I have become quite lazy in the morning and get up quite late). The side effects I am having which I am told are from the Docetaxel are the effects on my nails, hands and feet. They are not too dramatic yet but I get very sore fingertips. I have to put on very thick moisturising cream each time I wash them, which helps. Sometimes one or two of them get very inflamed, looking red and sometimes bleeding if I accidentally knock them. So I have been advised to do a lot less around the kitchen. I can do things which don’t involve the fingertips such as ironing and vacuuming but if I have to wipe the inside of a mug with my fingertips that is very hard. I also have a little bit of neuropathy (like pins and needles in my hands and feet). It comes and goes and is not too bothersome yet but I have advised my oncologist as he may well reduce the dose to prevent it from getting worse. It is a side effect which can be permanent so it is important to let them know you have it. Otherwise, pretty good really. I feel quite weird for the first week or so but usually perk up fairly quickly once the injections have stopped. I hope that helps but let me know if you have any questions once you are on it. Siân xxx
Good morning everyone,
@hopeful1974, @Louise65 and @Heels to walking boots I hope your chemo all goes well today, I'll be thinking of you.
I'm so pleased that people are starting to feel better too.
@hopeful1974 congratulations on your son's GCSE results - that's great news. Lovely to be able to have something to celebrate too.
@GonnaGetThruThis that's a great idea about the salt water bath. I will try that too if I need to this time as I suffered a bit last time. Pleased you had your daughter to help you do some things around the home too. I start Docetaxel next time.
Has anyone else been on Docetaxel - I'm sorry I can't remember!
@Louise65 I hope your cooking session went well! Chutneys made from your own produce sound delicious and a great distraction and very therapeutic.
Thank you all as always for your helpful replies. Sadly my chemo hadn't been booked in for Tuesday! I found out on Monday when I went for my blood tests and they couldn't get hold of one of my drugs for Tuesday so had to delay having chemo until Wednesday. At least it was only one day. Strangely enough, I have felt better on this cycle than I have on my others! I mean the nausea is still really yucky but I've haven't been stuck in bed as much as the first two cycles...yet!! I suppose there's still time! Although my bloods were better this time than cycle 2 and cycle 1 I did end up with neutropenic sepsis so maybe it was to do with that? Who knows?!
So it appears I hadn't put as much weight on as I'd thought - it was fluid retention from my delightful gastro problems that I've inherited with chemo/steroids and also my time of the month. Still gained a couple of pounds but nowhere near what I thought! I spoke with breast care nurse who says they may need to put my ovaries to sleep as I shouldn't really be getting a period still. So I may have to have an extra injection once a month. She also said it may account for my few sad days last cycle - chemo can play havoc with PMT apparently. Yay! Another side effect 🙂
I'm getting biopsy results today from the other 3 lumps they found in my breasts on MRI. Not sure what to expect, but I guess what will be will be. It might just mean more surgery I suppose when it comes to it.
Very jealous of you who grew up/are visiting/living in the Cotswolds! Such a beautiful part of the country.
I hope you all have a good day today. Thinking of you all xxxx
@Flower123 So glad to hear you are feeling better and managed a lovely pork pie. How lovely to be living in the Cotswolds. Such a beautiful place.
I will have chemo tomorrow as the injections worked their magic again and have brought my neutrophils up. They don’t seem to go back up enough on their own, so I suspect the two extra days of injections will become a regular feature. I am looking forward to being halfway through chemo tomorrow.
Our son received his GCSE results today and really did so well, so we have been celebrating, which has taken my mind off feeling a bit weird on the steroids!
I had a massage yesterday which was lovely, but I wouldn’t recommend doing it during G-CSF injections as I felt a bit more weird than usual on them!
Sending love to you all and looking forward to hearing how you are getting on. Siân xxx
@Flower123 hi I'm okish thanks. Certainly not as good as I was on my other sessions. I don't have the energy I had and my appetite is rubbish. The hospital called today to check all ok and said if I have concerns when there tomorrow they will get consultant down to check me before we start.
I grew up in the Cotswolds and family still there, what part are you in?
Glad your doing OK.
@GonnaGetThruThis i so wish I could get in the bath to ease parts that get uncomfortable. Glad your feeling better.
Hope everyone OK.
Good Evening everyone,
So glad to hear a lot of you are feeling much better and fingers crossed the ones that are not do so very quickly.
@GonnaGetThruThis So glad you managed to feel better and do a bit more with your daughters help
@Louise65 @How are you feeling now .
@hopeful1974 @I hope you have good news with your bloods to have next chemo
@hopeful1974 @Glad you had a lovely time in the Cotswold. I live here it is always peaceful and lots of green space to explore
I am now 7 days into 3rd cycle and today can honestly say at the moment feeling much better . Have had the usual mouth thrush/ down below,constipation, bones pain . Two injection left as have extra this time but here’s to it continuing!! Time will tell taking each day as it comes . Today I really fancied some food and it was a pork pie!! My day went to our local butcher and it was so good . Weather here not very nice . Maybe weather will change tomorrow get sun hats ready ladies !!
Take care everyone sending bigs hugs
It's very quiet here and I hope that is because everyone is enjoying the lovely weather (although today isn't so great) as opposed to not feeling well.
I know there are a fw having treatment today and tomorrow so fingers crossed it all goes well.
I am particulary 'looking forward' to hearing from Louise and Impatience how your first weekly P treatment goes tomorrow as that'll be me in 11 days time.
Thanks for everyone who has asked after me. I’m happy to say that I am finally back in the land of the living. Yesterday I was definitely feeling better, I mean the fact that I was up and about was a big win. Managed to do a few things around the house with the help of my daughter but still took it easy. Slept much better last night and today I was feeling a whole load better. Even managed a lovely long walk with a friend. Currently the only notable side effects are feeling woozy and having the feeling of being a bit sea sick. Looking back at my notes from last cycle, it was exactly day 8 and 9 when I felt the same.
Oh and yeah I do have a slightly sore bottom which has been there about a week so I remembered someone mentioned about a salt bath so tonight I did that to make sure it was all clean and helped with the healing. Fingers crossed the good feelings continue so that I can enjoy the lovely weather and the next half of this cycle.
@hopeful1974oh no I cant believe that your bloods have done this to you although it is kind of weird that you feel ok with them at that level. Fingers crossed everything goes well as I can imagine the annoyance of having to delay.
@Louise65 sorry you didn’t get back to full strength before you have to start the new cycle. It sort of feels like you missed out on a bit of the good times. Enjoy the cooking session that should be good. I’ve seen you mention a few times that you have to test and isolate before a session. It shows how different trusts act as mine just call me 24 hours before im due to go in and check im ok and no symptoms etc.
@Heels to walking boots what an amazing thing your daughters have done and I can imagine it was quite hard to see. When do you have to have your bloods done again? Hopefully they will be all ok and you can get that last EC out of the way.
@Mum2boys Hope the bloods were ok and that you had your 3rd EC today. Even though we know what to expect it is still hard when it happens. I definitely got off lightly up till now. I can quite honestly say the first cycle I was totally fine apart from being tired in the evenings on day 4,5,6 of the first week but that was mainly cause I was living on 3-4 hours sleep. Week 2 and 3 of that cycle I was perfectly normal. 2nd cycle was similar but I was slightly more tired in the first week but apart from that I was fine and then week 2 and 3 normal. This time 3rd cycle I was tired from the first night, and although I was out and about last week in the day I was a lot more tired and the evenings I was really tired. Then as I mentioned on Friday night I hit the wall and basically didn’t get out of bed till Monday morning. But it has improved as I wrote above and I still have 10 days of this cycle.
I cant remember, after this are you starting on weekly P sessions?
@Fairiewe absolutely have to put our faith/trust/whatever we call in in the medical staff. They know what they are talking about. So wonderful you can no longer feel the lump. The same thing happened to me after EC2 and when the Dr confirmed it had indeed shrunk I was so happy to show this is all working.
@JessicaBlovely photos so thanks for sharing. So far for me the cold cap is working, although im definitely shedding a lot more. I had my hair cut again today as I didn’t like all the long strands falling out. I am finding that the more I think of the cold cap the more traumatised I get so the minute it stops working then im giving it up and just braving the shave as well. A friend said to me that it’ll soon be winter so beanie season is our friend!!!
@Flower123 Sounds like an awful ordeal for you so hopefully you are starting to feel better now and the meds are doing their job.
To everyone else ive missed, thinking of you and hope to hear from you soon
Just wondering how everyone is doing. I have had the same thing as last time as my neutrophils were only 1.2 at my blood test today. So I had a G-CSF injection today and will have another one tomorrow. My oncologist is hoping I will still be ok for chemo on Friday. That will be number 3 out of 6. I have been feeling well and spent the weekend at my sister’s in the Cotswolds, which was so lovely.
@Mum2boys I lost a lot of weight on EC but have gained some on TCHP. I didn’t have much to lose when I started EC, so it was really scary to not be able to maintain my weight. Much better to have a few extra lbs than not enough, I reckon.
@Louise65 I hope your cooking session went well. I find that cooking helps me too - very therapeutic.
@GonnaGetThruThis really hope you have started to feel better.
Sending love to everyone else. xxx
@Mum2boys hope today has gone well for you and you don't suffer side effects. Ive gained a bit of weight but one of my oncology nurses said they rather patients eat full fat and anything thet fancy and at least get something inside than nothing. Then after can look at eating healthy etc. X
@Heels to walking boots hope all goes well Friday what time is your app? I start PC Friday at 1pm. Congrats to your daughters on donating their hair such a worthwhile thing to do and I bet you were emotional I would of been too.
@GonnaGetThruThis how are you getting on now? I'm feeling better have bit more energy but certainly not firing all cylinders and still have issues with my breathing. Had my covid test today so back to being a prisoner. Tomorrow I've decided to have a cooking session and will be making an assortment of chutneys as we have lots of fruit and veg from allotment and garden.
Hope everyone else is keeping as well as can be.
Love Louise ❤
@GonnaGetThruThis @Louise65 sorry you have not been well i am hoping you will start to feel better soon. Thinking of you both and wishing you well.
@mum2boys hope all goes well tomorrow my final EC is this Friday subject to bloods recovering so fingers crossed. Also a bit worried about the cumulative effects but hoping all will be ok.
@JessicaB you look amazing!
My daughters both shaved their hair off and donated their hair to the princess trust in support of me losing mine. Very hard to watch them do it but so proud of them ....they are also raising money for this charity 🙂
Thinking of you all always
@GonnaGetThruThis So sorry to hear you have been feeling so unwell. I found the effects to be cumulative too and felt ill for longer after my third cycle. My pattern was that I turned a corner after 5 days on cycle 1, 7 days on cycle 2, and 9 days on cycle 3. I still didn’t feel normal even after 14 days after cycle 3 but gradually felt better. Paclitaxel should be completely different in terms of side effects and I would think much more manageable, so hang in there! xxx
@Louise65 @GonnaGetThruThis I'm so sorry you've had a rough time with your final EC. I was warned by a few people that the effects are cumulative but it still doesn't make it any easier when you're going through it. I really hope you start to feel better soon and start to feel more human. Thinking of you xxx My 3rd EC is tomorrow as long as my bloods are okay today. My first cycle I felt rough for a week, 2nd rough for week and half so I'm expecting 2 rough weeks this time.
I'm gaining so much weight though. Eek!
@JessicaB you look beautiful xx
Hope you all have a good day xxx
@GonnaGetThruThis so sorry to read you've had rough few days. Good that your daughter and hubby can help you though to make things easier.
I have to say I'm day of my final EC and it's been a rough ride. I was on the phone to oncology 1am this morning my temp was going up, had pain in chest and struggled with breathing. Nurse was happy for me to stay home saying she thought I'd got bit of cold. Plus the more sessions you have the longer it can take body to recover. I have felt bit better today, although I am now feeling the weather change and get chilly quicker.
Hopefully you will feel better tomorrow. Hoping everyone else is doing OK.
Evening all. I've had a truly horrific 3 days and have been in bed nearly the whole time. I think/hope/prey im starting to feel better but my goodness its been awful. I feel like I finally 'understand' what many of you have been going through the last few cycles and also it shows how I really got off quite easy the first 2 EC cycles. I did finally manage to have a proper night sleep last night even though i was up every single 2 hours on the dot for the loo. I managed to get into the bath this afternoon and had my daughter (11) help me wash my hair and just make sure I didnt drown! It was quite an effort but i knew i wanted to feel that little bit better and it did help. Husband shopped and cooked food and has also sorted it for the next couple of days so that i dont need to worry about that for now.
Please those that are in week 3 of EC tell me you are all feeling good now!!!!!
Just remembered though that this is the last of this cycle and next time it is a whole new regime of weekly P so who knows.
Take care all and hopefully tomorrow I will have news of feeling better.
@JessicaB You look stunning in all of the photos. Hoorah for mild side effects! xxx
B e a u t ❤️ f u l 👏🥰
I am thinking of you all with a huge warm heart ❤️
I had EC (FEC) chemo, mastectomy, RT, tamoxifen and leterazole 15 years ago and have done super well over the years.
this cancer is not ER positive, it’s HER2 + and not connected at all to my first. It’s different and is treatable.
It is a tough journey and I can’t have EC again so having docetaxel and carboplatin aswell as the Herceptin drugs T and P. I’m not tolerating carboplatin at all well so having had three rounds oncologist is talking about stopping the carboplatin, even though he reduced it. I was worried that if I didn’t have it it would prevent the best outcome for me, but I’m told that is not the case. I’m told I’m on the right and most important treatment without the carbo abd that was an additional throw in to give the cancer a good damn beating.
I can no longer feel the protruding lump I presented with, so my hope is it’s melted / reduced🙏🏻
im telling you all this as there is life following BC.
I was “unlucky” to get it twice but am told there is no connection to the first and I’m unlikely to have a faulty gene ( awaiting test results in a few weeks to be sure)
they doing this to be thorough and IF a faulty gene they will do a hysterectomy for safe measure.
the thoroughness of the care amazes me.
so lovely friends.. it is tough yes, and there is life after chemo and we will celebrate with eachother xxxxxx Sharon ( Fairie)
Hi everyone. Most seem to be negotiating a tricky part of this treatment with one thing and another but you all seem to be finding faith in something to ride it out.
Whilst my SEs have been mild (ever thankful) it’s been a stressful couple of weeks. Our oven and dishwasher have broken amongst other annoyances…. Still we are chipping away at solving them and it’s a distraction from feeling weird.
Despite the cold cap my hair fell out so my OH shaved it off. Yesterday was wig day. I wasn’t going to bother but a chance chat when having my last chemo changed my mind. She came in in her and looked so lovely and was buzzing from the boost I thought I’d go for it. I put a few pics out on Facebook to drum up support for my sister’s charity brave the shave fundraising today and I had a lovely outpouring of support which has put the smile back on my face. Here are some pictures. I read you comments every day if I can and think about you all lots x
The lady I met also recommended Nozzeco for an alcohol free change from water, squash, juice etc. Normally I’m not a fan but nicely cold it was lovely and felt special and more normal. Ringing the changes here to get through the weeks.
sorry to hear @Flower123 that you were not very well and I am glad that you are now feeling better and I hope it continues.
@Louise65 hope you are feeling better too!
@Mum2boys I too feel very much the same way but as Sian says we need to focus on that many more people make it through than don’t..all the little positives, we will make it through this. We are all in this together.
@hopeful1974 hope you are continuing to do well.
@GonnaGetThruThishope you manage to get some rest and feel more energetic over the weekend.
I am quite sad today as I was supposed have my last EC treatment today before starting Paclitaxel but my bloods and hemoglobin were too low ..they were even discussing whether I needed a blood transfusion which, to be honest, I am not keen on. However for now they decided to delay it a week and hopefully both will recover. Funny how not having the treatment is also upsetting as I worry it will affect things..so need to take my own advice and focus on being positive and it’s better to delay than risk having a bad reaction. Also trying to make the most of things and arrange the family to come visit as I am feeling well.
hope everyone else on the group is doing well and I am thinking of you all.
sending lots of love to all! Have a great weekend.
Thank you so much for your lovely message @hopeful1974 . So kind of you. You're right - I know more people that have successfully come through breast cancer than haven't. I will remember that, thank you. We will all come through this!
Hope you have a lovely day today xxxx
Dear @Mum2boys , I am sorry to hear you've had a sad few days. I have experienced that when I have been Googling things or seen people on social media with advanced cancer. Even my Apple News feed seems to give me more stories about cancer than anything else! The problem with that is that you get a distorted view of things as the success stories rarely make the news. I take some comfort from the fact that I know more people who have come through breast cancer treatment and are doing well than people who have not. I think you have to believe that you will be one of the ones who beats it and goes on to thrive. That said, when I thought mine might have spread beyond my lymph nodes, I resolved to start making the most of each day. Once I had finished the EC part of my chemo, that was easier as I felt so much better. You're doing brilliantly and you WILL come through this. Someone told me that in a year or so I will have my life back, maybe not the same life as before as my priorities are likely to change, but a life worth living!
Sending lots of hugs to you today. Sian xxx