I hope you're feeling okay today @Flower123. I ended up in hospital after my first round of EC with neutropenic sepsis. They gave me my next round as planned but reduced it by 20%. Like you, I was worried about not waiting but oncologist just wanted to keep going. I've been fine this time with no temperature etc. My next chemo is due on Tuesday.
I hope you're feeling okay. I'm sure it feels good to know that you've done the last round of first drug. Are you now at halfway point? Thinking of you xxx
I'm so sorry to read there's a few here who have been having a rough time lately. This chemo malarkey is no fun hey?! I really hope everyone starts feeling better soon.
I never seem to be able to sleep the first 2 weeks or so after chemo either and noisy neighbours don't help either grrr. I hope you manage to get some sleep today @GonnaGetThruThis.
Sorry I have been absent. I have had a few sad days. I saw a few posts on Instagram that made me sad about other young people getting secondary breast cancer and I actually felt really scared and sad. But I had an ultrasound yesterday that showed my tumour had broken into pieces whereas it started as a solid mass. I need an MRI to see if it's shrinking cos it's hard to tell on ultrasound. But I'm feeling hopeful. Also had 3 more biopsies done and clip markers placed for 3 other lumps that were found on previous MRI. So I'm expecting to be sore today!
Thinking of you all and knowing there are others going through this at the same time is comforting.
Wishing you all a good day today xxxx
Morning all. Sorry to hear that there have been some more hard journies and I really hope that we can all start to feel better soon. I feel like i have jetlag like when i come back from australia in that i cant seem to stay awake past 9am and wide awake at 2am. Barely getting 5 hours light sleep is just not enough to sustain me when i have stuff to do in the day and also not able to sleep in the day (never have been able to). Couldnt take the sleeping tablet as planned when i woke up as my husband had to be off early today so i have to do the 8am drive with my daughter to her summer day camp so i couldnt risk being drowsy. I will try to rest/dose/sleep later on but tonight I can decamp to the spare room (so no hubby snoring or moving or interupting me in general) and take my tablets as and when i need as i wont need to be up for anyone or anything tomorrow morning. Worse case, this phase should be over in a day or so as I had the last steroid yesterday.
Here's to a better day for all.
@Flower123 Hope you are starting to feel a little more like yourself. Sending love and hugs xxx 🤗
@Louise65 I’m very glad to hear you have turned a corner and hope that Paclitaxel is kinder to you. One of my drugs is Docetaxel which is similar to Paclitaxel I believe and I don’t get the bad taste in mouth thing. The smell is not so bad either! I hope you stay well. xxx
@Louise65 Wishing you far fewer side effects with Paclitaxel. Sending hugs. xxx
Dear @Flower123 , I am so sorry to hear about your stay in hospital with an infection. I am glad to hear that your bloods are all up to scratch again though. I think it will be good to get the last FEC out of the way and then hopefully things will get easier going forward. Wishing you all the best with the next one and an easier time on the new drugs going forward. xxx
I do hope you feel much better soonest.
hope tomorrow goes well and sure effects on lower dose far less.
love Fairie xx
Hello Everyone I have been reading the forum and been thinking of you all . It’s lovely to hear so many of you have regained strength after a week or so.after chemo.It is also comforting to hear some of you have the same side effects as me so I don’t feel like I’m the only one .
Sorry not wrote for a while but been a bit unwell and had to have a hospital stay. Started to get really bad constipation and stomach pains with such a pain in bottom . Also sore throat. Then the temp started, by time at hospital temp up to 39.5. Had bloods and had neutrophils 0.5 . So said had bad infection was put in room on own with own bathroom and iv antibiotics had 20 bags over 4 days aswell as lots of other stuff . Never felt so ill .The staff at the hospital work so hard and so kind .I was lucky as hubby was allowed to book a 2hr visiting slot each day as had own room . This kept me more positive as only had nurses doctors come in and I’m partly deaf and mainly lop read so with the masks aswell find it very stressful. My husband comes everywhere as he is my ears .
Came home with more antibiotics and morphine, and felt better but totally tired .
Had oncology consultant few days ago and he said very nasty infection which the cells took a long time to replace . Plan was to have a week rest and then reduced chemotherapy or go ahead tomorrow with last FEC but at a reduced rate also an extra 2 Filgrastim injection to have so that be 7 in total . Consultant said all bloods good so could go ahead tomorrow. After chat we decided to go for tomorrow . I will then start on new drug for the next 3 cycles . Hope I have made correct decision and should not have waited another week !!
Take care everyone xxxx
Finally starting to feel better, apart from mouth as had thrush again and with the general yukky metallic taste eating isn't pleasant.
I start PC on 13th and have 9 sessions so weekly for 3 then 4th week off.
How are you doing?
Hope everyone OK?
I’m feeling good at the moment. My next TCHP is on Friday 13th Aug. I think I am benefitting from the longer gaps between chemo sessions as I have more good days than bad. The pattern seems to be that I have about a week of feeling really tired and just out of sorts and then start feeling normal again. I do hope I continue like this as it is totally bearable. I do have very sore and inflamed fingertips which is frustrating but apparently a normal side effect. Otherwise, feeling pretty normal a lot of the time and good energy levels after the first week or so. xxx
@GonnaGetThruThis I found that too with the sleeping tablets. I found that taking half a tablet at bedtime and then the other half when I woke up during the night worked pretty well. My tablets were Zopiclone (7.5G). I do find that Nytol (over-the-counter) works just as well if not better for me and so I just use that now.
I think that Paclitaxel is generally found to be much easier to tolerate than EC, so hopefully you’ll have an easier time on it. I found my last cycle of EC to be by far the hardest and it took a couple of weeks to recover, but I did recover! At least you know that you have finished with the EC now. Sending hugs. xxx
How's everyone going? I am definitely ALOT more tired this time around (EC3) and it started nearly as soon as we arrived home on Monday night. The last 2x i was totally fine until about now. The sleeping tablets arent really doing their job. I can easily fall asleep about 10, but Im still waking about 1am for a while and then going only to 4-5 at the latest. My nurse friend said that I should take them when i wake at 1 (but not later than 2) and only if i dont have to drive in the morning. Unfortunately tomorrow and Friday i have to drop my daughter off early-ish so wont risk it and just have to get through it for now. Today I have totally chilled which has been good and now just off to collect my daughter from karate. I am literally a taxi at the moment but i figure as long as i can do that then all is good. Hopefully this cycle will follow suit and after this week i can start to feel more normal again. Then like some of the others there is a whole new treatment to look forward to, 12 x P.
Take care all,
@Louise65 I hope felt like that on EC. Do you have any more to go or are you switching to a new drug next? xxx
@GonnaGetThruThis I have found sleeping tablets to be so helpful. I now have Lorazepam (not a sleeping tablet, but it does knock me out) for the first 7 days of each cycle and then I switch to Nytol Sleep & Calm Elixir (an over the counter herbal medicine) for the remaining days. I have always loved my sleep and just couldn’t do without it. I rarely have a bad night now. I know that I can sleep unaided when I am not doing chemo too as I have done it before, after my op, but there is something about chemo (and of course the steroids) which just makes me unable to sleep. I think that if you see this as a temporary thing which is just helping you get through the treatment, it is fine. Fingers crossed for a good night’s sleep for you. Siân xxx
@Louise65 sorry to hear you've been doing it tough. Hopefully you're starting to feel better now.
So for me, treatment 3 done and I'm back home now. Survived the cold cap, just, but my word it is intense. Ive just washed out all the caked on conditioner and now enjoying being lazy on the couch watching Olympics.
I mentioned to the nurse about the lack of sleep and she spoke to the Dr and she gave me 2 weeks worth of sleeping tablets! I said I only need them for a few days later in this week so hope they help as it will make such a difference if I can sleep even just a bit more. I mean anyone would struggle with only 4 hours a night let alone on top of chemo fatigue and all that comes with it.
For now I will just cross my fingers that the next 3 weeks are the same if not better than the previous 2 cycles.
Thinking of you all as always.
@GonnaGetThruThis good luck for tomorrow hope all goes well.
Since Wednesday I've been mainly in bed again as like 2nd round nothing to give. Struggled with fluids and foods and bowels just wanting it all to end. My last 2 injections caused horrendous lower back pain and I had no sleep Friday night. I did speak with oncology and the nurse called me today to check I'm OK which I thought was lovely. Today in up and can manage the odd job but then have to rest for some time. I know my strength is returning its just so frustrating as so many things I want to be doing.
I've booked onto the look good course Tuesday.
Hope everyone OK.
Hope everyone is doing ok. Ive had such a great but very busy week and tried to squeeze in as much as I could knowing that next week I'll have to take it easy.
I've just packed my bag for tomorrow's EC number 3. Not looking forward to the cold cap at all but I just have to keep telling myself that it currently is doing its job so I just have to get through it.
Been thinking about @Impatience and @Louise65 and wondering how your first 10 days have been?
On my phone as my husband has taken over my laptop for some work so I cant scroll back sorry so for everyone else, I hope you're all doing OK in each of your cycles.
Take care all
Hi Yvonne @simplyeve , I am glad to hear it went ok yesterday and that you are feeling more hopeful about this round with the extra anti-sickness tablets. I know that they make a real difference.
I have 5 days of Filgrastim injections from day 3 after chemo. They kept that the same for this cycle but lowered my Carboplatin dose to 50%. Apparently that is culprit for low neutrophils. Docetaxel was kept the same as last time (80%). If my bloods aren’t up to scratch at my next blood test, I have two extra Filgrastim injections to take on the two days before my chemo is due. They always work immediately for me. Last time, my neutrophils went from 1.1 to 19 over two days! They don’t want me to take them unnecessarily as they can put too much strain on your bone marrow if used unnecessarily. I feel comfortable with the new plan and think my next chemo should go ahead as I have the backup of the additional Filgrastim. Oddly, I feel pretty well and not exhausted at all. I have not lost any weight since starting chemo and have been able to eat relatively normally. So, I am not sure why my neutrophils are struggling so much! Anyway, fingers crossed that they will be fine this time following the lower Carboplatin dose.
I do hope you continue to feel well and your stomach feels better this time. Love, Siân xxx
Hi Siân @hopeful1974 ,
How are you? My treatment went well yesterday my bloods were all fine though I didn't get told what they were exactly. I am still on a 20% reduced dose my only issue was the canulation as it took 2 attempts and she ended up using the vein in the back of my hand again, after the one by my wrist blocked and blew up so I have a lovely bruise and it is a bit painful. I was given paracetamol and emend before they started, then I was given the perteja followed by herceptin over 30 mins with a short flush in between and given ondansentron before my docetaxel and carboplatin, which were both given over an hour again short flushes each time and I was finished by 3.30. Though my next session (19th Aug) they have amended to 1pm start instead of 9am and I have been given the emend to take at home beforehand as they are getting alot busier and most of the time are waiting for the meds to come down before they can even start.
I also have to have my bloods checked weekly I think they are trying to ensure my magnesium levels are staying up with the added chewable tablet which I now take am & pm and as my platelets were lower this time they are watching them too.
I do feel alot more positive this time, as I feel I know what to expect more and hopefully can manage things better with the extra anti sick meds; also I felt alot stronger going into the treatment this time, I know it's not easy to have to wait for your delayed treatment but I do think I could have done with having a longer delay to build myself up more before my second treatment so think your team are making sure you are fully recovered. Here's hoping your neutrophils keep improving, what treatment are they offering you? Do you have the filgrastrim injections? Or are they giving you an injection prior to your treatment day, I know one of the patients yesterday had had a blood transfusion, so maybe they will offer you that if things don't improve. I do hope you are feeling well in yourself though, I assume you are feeling very tired so the sooner they can build your levels up the better you will feel. Sending you lots of love and hugs
Yvonne xxx (simply eve)
@simplyeve Yvonne, how did it go today? I hope you feel better on this cycles than on previous ones. I am a bit behind you now with my third TCHP on 13/08, due to the delays to my sessions because of my neutrophils. Siân xxx
@GonnaGetThruThis I had regular periods prior to starting chemo. When I had three cycles of EC back in Feb - March, I had a period after 6 weeks (after my 2nd EC). I have had no sign of anything since, including when I stopped chemo for a bit, so it clearly has put my body into a state of menopause (temporary or permanent I don’t know). I get the odd hot flush, mainly at night. It will be interesting to see if they come back when I have stopped the chemo. So, it may still happen for you. It was like my body struggled into one last menstrual cycle and then just gave up trying! xxx
Thank you to all you lovely ladies..I dont know why I was so nervous to join in on this group! I've been at work the past 3 days and thank heavens for abit of normality. I've also booked my 1st PT session which is next Friday to hopefully get abit fitter and help along my journey. Hope your all doing well too sending lots of positivity everybody's way!! ❤
Thank you @simplyeve for really helpful post. I am putting off thinking about surgery and reconstruction as it won't be till after chemotherapy and I start the 2nd of 6 cycles next week, but I've been told it will definitely be mastectomy as my cancer is in the lymph nodes and an ill-defined mass in my breast rather than a lump.
But my breast surgeon is an expert in reconstruction and I have plenty of fat to choose from (my sister in law couldn't have reconstruction because she doesn't have an ounce of fat on her - this won't be my problem).
I am back at work today - three zoom meetings and my husband is muttering things not-quite-under-his-breath about people who try to do too much. But I am taking my hat off (carefully, as my hair is starting to come out) to all the women with this bloody disease who are also managing children and mothers-in-law and elderly parents and pets. My kids are adults (so they tell me) and doing a bit of looking after me, and my elderly parent (I have only the one, and my husband doesn't have any) jetted off two days ago to France where he is staying till the end of September. So I have it easier than many and am looking forward to a bit of normality with work.
Love to everyone and a big hug to anyone who needs one this morning. It is blowing a hoolie outside so my daily walk will have to wait xx
Welcome @Chynadoll, @Mum2boys, @Jennet as everyone has said non of us really wanted to be here but we are a great team now, helping and supporting each other, I hope we can do the same for you too, any questions just ask and I'm sure someone will reply.
Well quick update for me, back from caravan on Monday went for bloods, got phone call Tuesday to say kidneys ok but to keep up the fluids as much as possible, infection rate down, so only problem was magnesium was still dropping, so I had to collect a prescription for magnesium chewable tabs which I have to take am/pm for the next 21 days. Had a face to face with my Onc today and have discussed keeping the added sickness tab, the extra steroids and trying immodium instead of loperamide and if that doesn't stop my gut problems I can try co-codomol so will see how the treatment goes tomorrow. Fingers crossed I manage this one better, I feel a lot more positive because I actually feel like my old self the last couple of days.
@Heels to walking boots - you mentioned surgery, I had my first surgery at the end of March, my tumor was just below my nipple and so my surgeon offered me a choice of lumpectomy with the removal of the nipple (though I do still have the areola) and SNLB at the same time or mastectomy, at the time my tumour was recorded at 1.2 mm which is why I was not given chemo first, so I opted for the lumpectomy, unfortunately after my surgery it turned my tumour was a lot bigger at 4.2mm and I had a 1.4mm macrotasteses in my sentinal node, so I then needed a second surgery to remove all my lymph nodes and had 2 further macrotasteses so had 3/15 positive nodes. In hindsight I wish had asked for a little time to consider things, but I thought it was a small tumour and unlikely to have spread so I went for the lumpectomy and nipple removal. My advice would be if you have any concerns talk it through with the surgeon and if you aren't quite sure maybe a day or so to think it over and talk it over with your hubbie, my hubbie wasn't able to be present with me, so I made my decisions without having talked them over as really I just wanted to get the tumour removed. I hope my comments to Jennet and Mum2boys may also be of use to you when it's time to make a decision, I too have photos and would be happy to share them with you if the site allows. I had my lumpectomy on the 22nd March came home the same day, had very little pain, the district nurse came to change my dressing and I did have to have a further dressing, I started my excercises as advised and was surprised at how easy they were to do. I had to go back for results on 7th April and was scheduled for second surgery (ANC) on 15th April I had to have a drain, so stayed in overnight, this was a harder surgery and had the drain removed by district nurse on 26th April but would agree that it took me longer to get over, my results appointment was 5 May so nearly three weeks after and was probably 4 weeks before I really felt completely over it. Thanks for the good wishes I am very positive that this treatment will be better this time around!.
@Louise65 Happy Birthday! I hope you had a lovely time with your family and you are managing to cope with the depleted energy and food and fluids. I would definitely recommend getting in touch with your team if you are still struggling, I had an extra sickness tab at the of my last session and my Onc has agreed I can carry taking it as my Cyclazine doesn't last quite long enough to take me through 24 hours.
@Trowster - hope you too are feeling better and the cream for your head has improved things for you. I find I need to eat small portions and often so end up with custard cream biscuits, I also find the alpro vanilla desserts quite nice they just slide down and rice pudding, basically really bland.
@Mum2boys - please don't be hard on yourself I too have carboplatin but with docetaxel and my first chemo literally wiped my entire gastric system out, I ended up in hospital, but the result has been that my team are really supportive, my dose was reduced by 20%, my steroids have been extended to over 5 days and my antisickness meds changed. Whilst my second treatment wasn't perfect it was so much better and I feel the more treatments I have the better they will get, so my advice is to contact your team as soon as your feel you are not coping and let them help you. Also last treatment I got very low and anxious over things I could not control, then after a comment form Sian (hopeful 1974) I remembered my Oncologist telling me that the steroids could affect me and I really think that was the case this time, so now I have been prescibed some diazapam and so am prepared if I feel my anxiety is getting out of control again.
@chynadoll - you have such a wonderful positive attitude I'm sorry I can't give you any advice on EC as I am not receiving that particular treatment, but I do hope you continue to get through your treatments, you are doing amazingly well.
@hopeful1974 – Sian you sound as if you are coping well again, you are always so supportive and helpful, I bet you are great at your job, but totally agree you shouldn't consider working until your immune system is able to cope again.
@Jennet – as I wrote to Mum2boys I've had my surgeries and was told if I had chosen mastectomy I would have had to wait for a reconstruction so think that too may have affected my decision at the time, though now I feel that would not have been a problem had I gone down that route. I now have one breast nippless and much smaller than I thought and so will probably try a prosthesis, but also have to had radiotherapy which may well change my shape/size further. My radiotherapy will be in November I think and as I'm having trastazumab and perjeta treatment which will continue until around June next year, I still have a fair way to go.
@JessicaB I'm so sorry to hear of your problems with your MIL, when you live a distance away it is difficult enough and with the current situation it must be making your life so much harder and you really do not need the stress at this moment in time. Good luck with your Chemo tomorrow, I hope you manage to use the cold cap and slow the loss. I'm glad you are managing to find some pleasure in your garden, I have been out giving my front garden some much needed tlc this week, I had beautiful lavender in a pot, which my hubbie unfortunately had been forgetting to water when he did my others and its taken a bit of a battering, but I 'm hoping I can manage to revive it.
@GonnaGetThruThis So pleased that your genetic results were good, I too worried about passing a gene on to my daughter but the surgeon reassured me that mine was age related and not genetic, I'm 62, sorry can't help out with menstruel issues for this reason obviously. I hope you all have a lovely day celebrating with your daughter.
As this has been such a long post, I won't names everyone in the group but I do hope you are all staying well and I'm sending your all positive vibes, big hugs and much love
Evening all. Welcome to the new members, as the others have said, sorry we have to meet like this, but we are all on this journey together and in the short time we have been here we have already helped each other out plenty and it is also so good to have people to talk to that really know what you're going through. There are so many new terms and drugs and information that seems so overwhelming at first and its scary how quickly it becomes 2nd nature and just part of your daily life.
I'm currently in week 3 of my 2nd EC cycle (day 17/21 to be exact). Since about day 8 I would say ive been totally fine and back to normal, which is great as it means I nearly even can forget about this for a while and enjoy myself. I am definitely followng the same path of the first cycle, in that the first few days after Monday treatment are totall fine, then for me around day 4/5 when i stop the steriods i start to get tired in the evening and then day 6 and 7 I'm pretty much shattered. Then from the start of week 2 i am nearly ok.
Something new though. 2 days ago I was saying how my period hadn't come and it was day 30 of my cycle and usually it arrives on day 21. I was hoping this was one side effect that i would be greatful for. Then i clearly jinxed it as yesterday morning it turned up and wow it is heavy. Today i seriously cant be away from a bathroom for more than an hour. I am really hoping it slows down a bit as it is awful. My BC nurse friend said this is common and it will be all over the place. My first one since chemo came ontime and was normal.
Are any of the other ladies who still have periods finding any difference in their cycle?
Oh and also the lady who did my Genetic testing called me and my results were back - all negative which whilst it was expected was still good news. To be honest i was more concerned for my sister and daughter rather than me cause im already here, whereas it could be something they have to deal with.
Speaking of my daugher, it is her 11th birthday tomorrow so i am so happy that this is week 3 as we have a reat day planned with lunch fo the 2 of us, then picking up her friend and going to the cinema, then a bit of shopping, followed by dinner with the husband as well and then cake! If this was week 1 then i would have struggled.
Thinking of you all, keep strong and keep posting!
So sorry, no time to tag everyone as need to catch up with work before tomorrow's chemo.
This will be my second FEC cycle. Following the first one I have been amazingly lucky up to now and have appreciated this having read what some of you have had to endure. I have a mild sore mouth and sporadic pains in my feet. There was a worry about cystitis for a day or so but that was the advent of my period- three weeks after the last one (I am peri and was hoping that would all stop but its gone the other way). My hair has started to fall out now. To what extent I don't know so one more attempt at the cold cap tomorrow if my tender head can cope with it.
Thanks for sharing regarding mastectomy information. When I had my results with the breast clinic they were happy it was healing well. However, the area isn't flat and projects near the centre (I still have a mini cleavage). I did ask about this and they said they could do more surgery if I was unhappy. As I have no idea what to expect following surgery I thought this was a bit lame to be honest. I wondered if it was post operation swelling but a few weeks on its the same. I opted to do nothing as I am going to have reconstruction following chemo. I think I should have looked at pictures of what it should look like before I had the surgery to be honest then I would know if this was below standard or just what it should look like.
I have been following all your progress when I can but we have MIL trouble - she fell and broke her hip. Sadly we live about 3 hours away and she isn't the easiest person to help so that has been a stress this household could have done without. In fact she is rejecting every suggestion to help her stay in her own home at the moment, but still wants to go home...
Monday saw us at the hospital for bloods and COVID swab followed by a journey down to Thame, Oxfordshire to pack up clothes etc and then a trip back up to Banbury to see her for the hour slot allowed (Not me, as I am isolating and they only let one person in at a time anyway). Then a 3 hour drive back up to Lincolnshire. I went to keep my other half company. Sadly the provision of the mobile phone to keep in touch was rejected and so the whole drama will rumble on for a while. Still its a distraction from thinking about side effects continually!
Booked in to a lot of the Look Good Feel Good sessions so might 'see' some of you there? It seemed a positive thing to do.
I agree that its impossible to be positive 24/7 but finding a bit of joy in every day is the aim. Today it has been picking runner beans to have with dinner!
Here is a pick of me in front of the runner beans before my hair started to shed
Lots of love to you all xx
Thank Sian @hopeful1974 for the information really useful and I am glad that it was not found anywhere else in the lymph’s for you as you say a real relief! I guess they will check mine at surgery ? I still nervous about that .
Dear Anabel @Heels to walking boots , I was told lumpectomy is roughly 2 weeks’ recovery time and mastectomy 3 weeks, which is what was the case for me. I was in for one night with my mastectomy but if I had had reconstruction, I think I would have been in for longer and I think the recovery is longer too. The surgeon was happy he has done a mastectomy rather than a lumpectomy in the end, as they only just managed to get clear margins. I had all 21 lymph nodes out as cancer was found in 1 of them. Fortunately, it wasn’t found in any of the others, which was a relief. Siân xxx
Welcome @chynadoll @Mum2boys @Jennet i am sorry that you are on this journey but we are in it together and through shared experiences we will get through.
I am EC at the moment and will have my last cycle of this next Friday before I start Paxcital (spelt wrong!) I find the first week I wiped out with headaches and start feeling much myself normal by the second week. Emotionally all over the place lol but everyone here keeps me sane 🙂
@hopeful1974 thank you for sharing about your choice of not having a mastectomy..I am not sure what to do yet as surgery will be after chemo as all will depend on how much it shrinks . was recovery quicker?
@Louise65 Glad you have had a lovely time with your daughter and I am sure it will be emotional! I hope your energy levels keep improving.
@Trowster Hope you have a lovely time with friends and manage the cycle back! I am going to attempt a ride later today .
@simplyeve good luck for tomorrow!
@GonnaGetThruThis @Flower123 @JessicaB @Fairie hope you are all doing well??
Sorry if I missed anyone as doing this from mobile in a caravan lol!
Sending lot of love
Mum2boys, you are doing everything you should be doing, if your body tells you to rest then that’s just what you should do, so sorry you have had sickness have you asked them to change your anti sickness meds, I was so Ill when I had this 13 years ago but the team were amazing and did everything they could to help me, your doing amazing homeschooling your boys I bet that can’t be easy, it’s great to have a good support network, Day 6 on second dose and I’m feeling pretty good this time, I’m even hoping to meet friends on Saturday at a lovely cafe, but might not be up to the bike ride so may go in the car, or get hubby to drop me off and I will just cycle the 16 miles home, I’ll see how I feel on Sat,
@chynadoll just wanted to say hello to both of you who have sadly found yourselves on this unpleasant journey. This site and the ladies on here are invaluable sharing stories, tips and journeys supporting each other. Although I have alot of support I do get fed up of being told to remain positive and on the odd occasion have had to tell people politely you cannot be positive 24/7 and should not be made to feel bad if you have a bad day.
Hope everyone is doing OK, my daughter goes home tonight so will be a very emotional goodbye but having her stay has been so lovely.
Hi @Jennet , I had 3 cycles of accelerated EC in Feb-March, then my mastectomy in April and am now back on chemo until mid-October. I was told I could be a candidate for a lumpectomy but that I would have three weeks of radiotherapy if I chose that option and also there was a risk I would need a second operation if they did not get clear margins. I have minuscule breasts so decided mastectomy was the way forward and opted not to have reconstruction as at the time there was not enough tummy fat for them to take so I would have had to have it taken from my thigh. I am absolutely delighted with the end result. I am flat on that side now and the scar is really neat. I don’t mind putting up a photo if anyone is interested. I don’t need to wear my prostheses as my padded bras make it look the same on both sides. It is such a very individual decision and many people were surprised I didn’t want reconstruction. I found the operation fine and the recovery was relatively quick. I found the whole thing much easier than chemo.
I think my operation will be around the same time as you @Mum2boys after all the chemo.
Hoping the chemo might shrink the mass - that’s a possibility they said.
Also it’s okay not to feel positive all the time. I know you’ll know that, but I’m fed up of total hogwash about being positive and better outcomes. Some days I’m positive and these forums really help…other days I’m a grinch. This is a long haul - keep going!
Thank you all so much for your welcome and reassurance. My husband tells me that we're all different and it will affect us differently too. I think I was having a low day yesterday as I've generally been really positive! But I managed to walk the dog yesterday and saw someone else had managed a 30 minute workout and felt so rubbish about myself! But thank you. I've woken up feeling brighter and your messages have really helped. Thank you.
@Jennet I haven't looked at reconstruction yet as haven't been told whether it will be a lumpectomy or mastectomy yet. I'm thinking of going for a mastectomy though because the tumour is quite large (although they're trying to shrink it). I have to have another ultrasound as MRI has shown another suspicious thing in same breast too. Will your operation be fairly soon do you think? I think mine will be about December/January after chemo.
@chynadoll EC chemo hasn't been as bad as I thought it would be. It's called 'red devil' and I was thinking uh oh. But generally so far it's just been the nausea that's not nice; so I agree - take all the anti-sickness meds you can! And I've found nibbling on crackers throughout the day helpful too. The nurses are so good too at helping with side effects aren't they?
Much love to you all today. Xxx
Hi @Mum2boys @I just wanted to say you’re not doing anything wrong, this is going to hit us differently at different times and our circumstances are different. I’m continuing to do bits of work as and when I can - I’m freelance so no sick pay is one reason but mainly because it helps me maintain some degree of normality when the rest of my life has gone haywire. I’m so glad that my kids are adults (so they tell me); how those of you with small people to look after manage is amazing. And there have been days I’ve stayed in bed all day. I’m going for my second round of chemo (EC) next week- one more of those, then a different regime for 3 cycles (docetaxel, pertuzumab and something else), then surgery, then radiotherapy. I’m trying to decide on reconstruction right now. Is anyone else at that point?
@Mum2boys and @chynadoll Lovely that you have joined us. I find the group very helpful as I don’t feel so alone on this journey. @Mum2boys you are definitely not doing anything wrong. One thing I have learned so far is that each type of chemo affects people in different ways. I know some people who were fine with EC but for me it wiped me out and I was in bed for several days each time. I most certainly could not have worked through it. The drugs I am currently on (Docetaxel, Carboplatin, Herceptin and Pertuzumab) seem to affect me less so that I can function fairly well for the first week, albeit with a fuzzy head, and I am now on day 9 and dare I say it, I feel semi-normal. I am still not able to work, though, as I work in a school and it would be too risky to go in given that I am now clinically extremely vulnerable. I think that I would also be too tired as my job was pretty full-on physically and mentally. I would say that you should not feel the slightest bit guilty for letting others do all the work you normally do around the house and with food prep etc. Accept every bit of help you can. My top tip for EC, @chynadoll, is to take all the anti-sickness medication they give you. I decided that I didn’t need all the Dexamethasone tablets (steroids) the first time round but quickly learnt that they were necessary to stop the sickness! Sending love to you both and to everyone else today. Siân xxx
@Trowster thank you, it is unfortunate but I believe everything happens for a reason and I've been put on this path for some reason or another 🤷♀️ I did try the cold cap on my 1st round but 10 days in my hair starting coming out in big clumps so I just shaved it. I think the clumps coming out was more upsetting that the actual shave! But it's only short term and it will grow back. Glad to hear your feeling better and that's really good news about the doctor signing you off. My work have been brilliant for me but I go in for the sanity and normality more than anything really 😂 hope today's an even better day than yesterday for you! X
chynadol, so sorry you have been dealt this awful card at such a young age, I did my second round last Friday, and tonight I am feeling a bit more normal after having a very tired day today, did you do the cold cap, I’m very I’m very fortunate that my doctor just signed me on the sick once I was diagnosed, but luckily I get full pay for 6 month, then half pay for another 6, I just don’t think my brain is in the right place to continue working, a lot of my work is memory related, take care and this is such a good group for any support you need, x
@Mum2boys thank you so much! I'm quite nervous about starting the EC part because I don't know what to expect! How's your experience been on this so far? I saw your other post and just want to say your not doing anything wrong! Although it's hard not to feel bad I completely feel the same when I cant get out of bed and my partner has to do everything with the kids. But I just think a few days in bed getting better is better than the alternative! X
@chynadoll Just thought I'd say hi to you. We started chemo on the same day. I'm sorry that you are having to go through this too.
Well done for getting through 2 rounds and sounds like you're coping really well. I'm currently on the EC part of the chemo you're having next. My next one should be my last and then I start a new chemo (Docetaxel). If I can help with anything to do with EC chemo, just ask xx
I've just seen that this forum is here and thought I'd say hi.
I'm 37, have er+ her2- breast cancer and started chemotherapy on 29 June. My tumour is quite large and has started to spread to my lymph nodes so I'm having chemo before surgery.
I had my second round of EC chemo last Tuesday. The first time round I got neutropenic sepsis, so am bit nervous this time! The nausea both times has been quite bad but I've managed it with tablets. The gastro side effects haven't been fun either! I keep thinking there's something wrong with me though - I see/read about these people who are going through chemo and are running, working etc - basically being superwoman - and I feel like I'm doing something wrong! I'm fortunate enough not to have to go to work - I homeschool my sons and work part time. Plus family and friends have been amazing and cooked for us and mum has helped clean. So I look at these other people and think, am I letting cancer beat me cos I'm resting so much?? Am I doing something wrong?
Hi everyone. Really nervous to post but here goes. I've been diagnosed with triple negative breast cancer at 29 🙄. I'm doing 7 rounds of chemo. I did my 1st on the 29th of June. I'm doing a round every 3 week. I started on abraxane and carboplatin and did my 2nd round of that last Friday 😬 so far I've been floored for a week but by week 2 I've been back at work. I think next Friday is my last on this half of treatment then I'll start the Epirubicin and cyclophosphamide. I think this is the EC part that I see so commonly used on these forums..please correct me if I'm wrong! Anyway I'll leave it at that. Please feel free to share any tips you have on getting through this and particularly tips for foods to build up immune system and iron levels
hi Louise, not been too bad so far, just got a very sore head with lots of little blisters, my hairdresser has given me some cream that is really helping, I have been so tired today n had a couple of dizzy spells, also not got much of an appetite just cereal for brekkie, cheese n crackers for lunch n soup for dinner, but still trying to drink lots, hope everyone else is ok, it sounds ideal to be away n relaxing, take it easy everyone xx
@Trowster hi how you getting on after Friday?
Hope everyone else is doing OK I'm sure there are some of you had treatment today so if there are hope all gone well, if not then best wishes to those next. My brain is a bit mushed lol.
I'm day 5 and having my daughter here for few days is lovely, my son and daughter in law are coming in while as it my birthday. I csn feel my energy levels depleting but and I'm struggling with heartburn although I've got stuff to take. So just lazy day snoozing on settee whilst my daughter works as she set up new business in March.
I'm hoping this time I won't end up in bed for 3 days. Still managing to eat small meals and just about get enough fluids in.
Another day ticked off this awful journey.
Love to all
Hi Anabel @Heels to walking boots
That sounds really good, I think I will wait to see how I cope with my treatment on Thursday in that case, thanks for taking the time to reply, hope you are doing ok.
Love Yvonne xx
Hi Yvonne @simplyeve I phoned on Monday and has an appointment by Wednesday so they are pretty good at fitting you in.
@Trowster Thanks for the info, they do sound lovely I have next treatment on Thusday so will have to see how I cope but might give them a call tomorrow to see how quickly I can get appointment hope you are still feeling ok.
love Yvonne xxx
Yvonne, I took my sister with me for the wig fitting, we ere even offered Prosecco, well worth the visit the ladies re so nice in eitherChester or Prestatyn,