Dikat & Sunnydaze,
Well done you two for the exercise. I'm on day 6 after last chemo today and feel really low. I can't wait to have the energy / motivation to do anything. The time is going so slowly this round, I think because I'm waiting for it to end and to start to feel better.
I was up for about 2 hours around 2am looking at healthy foods and recipes on line. I really want to get going on it but its too soon yet.
Pleased everything went well today DiKat, I should have my first infusion the same as you, 2 weeks tomorrow, I have 18 of them in total every 3 weeks, plus the hormone thing for 10 years. Still feels like a long road, but get the next week out of the way and it all must start to improve ??? Everything still seems to be happening so quickly that it is tough to adjust emotionally to anything. I don;t know if the infusions will mean I can continue to take the time off work or not. I'd really like to stay off. I feel like I've had 6 months stolen from me and the family and I really have no interest in going back. Maybe its the post chemo emotions playing up. Right now I feel like having a good cry and screaming "when will it all be over ?"
Oh no Sunnydaze, sorry about your roller coaster weekend and thank goodness your lump is a cyst. It would have sent me in a complete state of panic too. Having that to worry about along with how the T affects mood wouldn’t have been a good combination so good on you for getting out and about on Sunday. The yoga idea sounds like a good one, think the stretching will help with the aches so will check that out. I felt a bit down yesterday after going for a short walk and finding it a bit of a struggle. Legs felt so heavy and was quickly out of breath. My natural pace is normally quite brisk and I felt much older than my years, just have to accept I need to slow down. Well today I decided to test myself. Had to drop my car off for MOT so decided to walk the 5 and a half miles home. I took it steady and it was hard going but I just kept saying to myself, come on you can do this...you’ve done bloody chemo. My thighs are killing me now but feel a sense of achievement. Glad you enjoyed your walk and all the beautiful things you saw. Mindfulness at its best. The cry would have done you good and I’m sure your mood and emotions will improve once these horrible toxins are completely out of your body. Big hugs 🤗 xx
Here is the complete beginners yoga by Adriene linkshttps://youtu.be/v7AYKMP6rOE
I hope you are baring up. I hope you are managing the side effects KC72 and Jayne from your last infusions.
Hope it isn’t too tough for you. Good luck with the targeted therapy Dikat. I guess it will be tough, but these targeted therapies seem to be getting better and better. On the scale of things 10 months isn’t so bad, I am highly er+ I will have to be on Tamoxifen or an other form of hormone suppressant for 10 years. I think I would rather do the 10 months if I’m honest. Good luck with it anyway. It all sounds like they’re on it.
Stuck at 14 , that’s good you can get another year off. Quite right too. Btw don’t forget to see if you can receive any money from your Union’s benevolent fund. I have my form, I just haven’t completed it yet, but I should, given how long I have paid subs for!
I will be returning to work late August, the new term starts in August in Scotland because we break up earlier.
I have had a bit of a roller coaster weekend filled with a few highs and lows.
On Friday, I found a cyst like lump on the back of my scalp. Fortunately, I went to the Drs this morning to have it confirmed as a sebaceous cyst. I was in floods of tears in the Drs, I couldn’t cope with anything nasty again. But thank goodness it’s just a cyst, but it has played havoc with my mind and emotions this weekend. The fear of cancer returning is going to be a hard emotion to manage... but exercise definitely helps me.
My low mood was a bit crippling on Saturday, but on Sunday I rummaged around for my Fitbit in my drawer and went out walking and on my bike. It felt good fun and quite motivational to count steps again.
I also read my book on the 5:2 diet, thanks for the tip off Dikat, it’s a really good book. Nice and straightforward. I’m going to start properly after I see the onc on the 10th May.
I also began for the first time ever a complete beginners yoga with Adriene this morning. I’ll post the link, at the end, along with another one from a yoga teacher at the Haven and this one is specifically for women with bc. Anyway, I felt great afterwards and I really recommend giving it a go. A free yoga class in the safety of your own home. The hardest thing about it was finding the motivation. I just didn’t realise how so very very stiff my body is. Anyway, I’m going to stick with it.
After going to the Drs and the after effects of finishing chemo I have felt very emotional. I think this is normal, but it took me by surprise because I have coped really well with surgery, chemo and bc generally, but now that emotion has hit me like a punch bag. I took myself on a walk this morning in the Spring sunshine and had a good cry. There’s nothing like being in nature to cheer me up. It was funny I saw loads of birds, all in pairs getting ready for the mating season, very sweet, baby lambs and my favourite flower, the bluebell. I have been longing to see the bluebell this year because I knew that when it appeared my chemo would be over,and it is.😊👍 Anyway Ladies, here is a beautiful picture I took this morning of the bluebells, for all of you, gives us a bit of hope. Spring returns each year with a newness, never lets us down. Gives us hope and promise of something better.
Hi Stuck At 14
Yes, it’s because I’m HER2 positive, ER & PR negative. I guess I’m lucky that I’m getting the Pertuzumab as well as it’s something extra to throw at it based on clinical trials. Not sure what % difference it makes. Surprisingly to me as I’m one of those people who normally want to know everything, I never want to know about numbers in this case.
Having time off work has got to be a good thing 😉 xx
Sorry to hear you have such a long continuing treatment Dikat - is it to do with receptor status? If you dont mind me asking? I feel similarly reassured by the thought of my future surgery to be honest- I might still have a year at least of appointments and recovery and time off work.
Hope everyone is on a 'good day' or at least can see one on the horizon. 🙂
Hope everyone is doing ok and side effects are beginning to improve.
Had my bloods done today and seen Onc nurse. They are happy for me to go ahead with my targeted therapy infusion - Herceptin and Pertuzumab - on Wednesday. My neutrophils are only 1.25 but should be ok for Wednesday. Will be interesting to see what side effects these 2 drugs have on me. Nurse said might have a few aches and pains but hopefully nothing major. No steroids needed thankfully 😅 Apparently I’m the first one at our hospital to have this combination for bc as it’s only just been approved by NICE. A lot of ladies with secondary’s already have this combo and she said they seem to fair pretty well in general....so it’s continued 3 wkly blood tests and IV infusions for the next 10 months for me. In some ways, it’s quite reassuring to still have the connection xx
They need the scan to calculate angles and depth of CT. Also if you're left side, they will probably want you taking a deep breath and holding for 30 seconds (this moves the heart away from the chest wall). If it's right side then you don't need to do this. I've had 3 planning trips to radiology, one to get a vacuum mattress sorted (it moulds to your body so you're always in the same position), one to practice the breathing, get tattooed and scan, and then today's on the actual machine to get measured for skin protecting layer. I start the real thing on Monday.
Hi Stuck at 14, don't panic. When you start Rads, you have a planning session.. they do a scan to get a good picture of you so that each session is perfectly lined up, you will also have lots of measurements taken, they'll draw all over you and give you some tiny tattoos (just little dots) so that at each session they line up perfectly. I panicked too but they reassured me they weren't "looking for anything" but merely getting an accurate set up before they start. I think they refer back to the scan at each session to ensure pin point accuracy. I'm sure they'll explain it all for you when you go.
Its terrible how everything just sends you into a spin isn't it.. I find the same.
Hope this helps
Just had my letter for first radiotherapy appointment (ct scan) and it sent me into a bit of a spin- I hadnt considered the possibility of a scan and what it could show....does anyone know exactly what it's for? Brings back all the staging scan anxiety and in the middle of bone pains it's even worse!
Having said that I'm so grateful as always for these threads reminding me that all these up and down feelings are normal:-)
Helloooo.. I've found you all.. was getting worried the January chemo starters page was extremely quiet... wondered what had happened!
That’s good news Jayne. I’m so pleased for you and great you get to keep your own nipples 😊 Have you still got to have 3 wkly Herceptin? X
Yes dikat every 3 weeks for HP for a year. Only pain is having to keep the PICC line in all that time. Going to look lush on the beach in October half term lol.
Wayhey😊😊 🔔🔔🔔🔔 Ding dong. The bells are ringing out for ya, KC72.
Glad you’ve had a good response to chemo too Kitkat ❤️
Seems everyone is saying that they have also struggled with the last one, makes you realise you’re not on your own .
Big hugs everyone xx
Ringing that bell for you kc72 🔔🔔🔔 well done.
It has been great how we have all supported each other on these forums 💕
🛎🛎🛎🛎🛎💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💃🏻🛎🛎🛎🛎🛎yehhhhh kc’s 💪💪🥊🥊🥊🥊though 😁😁😁😁 bit of breakout by swing out sister on the jukebox for you 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻😘😘💕💕✨✨Shi xx
Fantastic news that you’ve had a good response to chemo. I’m pleased your taste is improving, mine is too slowly. It is great to know we won’t be getting dosed again. Cheers 🥂 to you. Keep us updated how you go with surgery, think there’s a few of us having it at similar times xx
Just popped in from the Feb group to say a huge thank you for sharing your after FEC and after T photos. I've just completed 4 rounds of FEC (I'm on a trial) prior to surgery and have cold capped. I've got some hair left, but not much, and hoping to have some regrowth soon. Your after T photo has given me hope that my hair may continue to grow during T after my op.
All the Best, Susie xxxx
Ring a ding ding ladies 🔔🔔🔔
no bell at hospital so ringing it here!
Not been home long from hospital and feeling hugely emotional, but know when I wake in the morning it’s going to be a good feeling. But right now but of a sobbing mess - wasn’t expecting to feel so tearful 😭
But as all you wonderful ladies say onwards and upwards. Forum has been great for support and tips and advice. Thank you too Shi for your wise words and encouragement.
Right now am sending lots of thank you texts to friends and family, but sincerely a big thank you to you all for being there - it’s made a real positive difference. 💕💕
Hi Stuck at 14, have you tried difflam, paracetamol and ice lollies?
Well saw the surgeon today and he can’t feel anything and says I have had a really good response to chemo. However I am still facing mx and anc mid may, discussions re recon are ongoing. But that there is a small chance now that I no longer need rads. I am ER+ and asked about ovary removal versus 10 years of drugs but once menopausal, which I am, it still needs to be the drugs as the body finds other ways of making oestrogen apparently🤬
This last T has been a rough one and seemed never ending but two weeks on I am finally picking up but still get breathless and also had the low mood which is (I have just learned this week) another known SE of T. Wish I’d known that 3 months ago as I have had leaky eye syndrome in the middle week of each cycle. Anyway my taste is back if still a little salty and the numbness in my hands and feet is improving though the nails are lifting and not fit to be seen, so life is returning.
Doesn’t it feel great to know we won’t be getting dosed again and that we will soon be feeling better...
just hope I get eyelashes back soon cos the tree pollen means even leakier eyes😭🤧.
Here’s to a happier healthier, if sun protected, summer🥂xx
Hi Stuck at 14
ive had oral thrush every round. Fluconazole tablets are what you need. They are stronger than the drops. Also stop using the difflam mouth wash and just use bicarb dissolved in a pint of cool boiled water. Use this mouth wash throughout the day. My onc told me to do this, she told me the green coloured mouth wash could often make things worse. Once I stopped the green mouth wash my throat was not more sore anymore and thrush better. Maybe worth considering...good luck
Ahh thanks for your kind words Shi, those are good suggestions.😘
I am also finding it harder to bounce back after last T treatment. Still a bit achey and no energy on day 11. I thought it might have been due to having a busy Easter weekend. The forum is great, so good to know others are experiencing the same. So sorry for those of you who have stomach problems and thrush to deal with as well, that is just not fair.
Roll on the good days, surely not long now until we all feel "normal", X
Stuck at 14, slosh with some difflam, are you taking the fluconzole too? I got oral thrush every round 🙄 dikat speak to your unit about guts, Karana on my thread struggled for a bit after chemo but things did settle down 😘😘sunnydaze ❤️❤️Finishing chemo is such a relief that all these emotions you didn’t know you’d suppressed can surprise you, it is part of the journey but do not forget your Macmillan is there for a coffee and a biscuit and there are usually some kind of yoga or exercise classes and reflexology things too you could sign up for if you didn’t already know about these 💕💕✨✨Shi xx
Hi stuck at 14
Sorry you are suffering. When I had oral thrush, the nurses told me that the nystatin drops were a waste of time and needed to have fluconazole prescribed. Is that what you have? X
Agh oral thrush sore throat. I'm sure I'm overdosing on the nystatin drops. Taking one fluoxygig a day but what else can I do to stop the discomfort? Any tips? Easter egg doesnt seem to be working either!
That’s good to know Pastamissus. Glad you’re finally feeling better. How many weeks post chemo are you now?
I found my last T took me 14 days to get brain properly back and get over the tiredness, it was much worse and lasted much longer than previous cycles. I now have a fully-functioning brain and am not having afternoon naps (although not doing anything very energetic) so it does get better, it just feels like it never will!
That’s good news Jayne. I’m so pleased for you and great you get to keep your own nipples 😊 Have you still got to have 3 wkly Herceptin? X
Dikat, they say no rads unless the investigation of breast tissue removed shows anything up. I'm very relieved tbh
Ahh thanks for your kind words Dikat. They made me smile and there is comfort in knowing we are all in the same s****y boat!!!!
Yes, my mood will pass, just as the bad weather blows through, so will my mood. I think it’s a combination of wanting desperately to get on with life again, but also realising it’s going to take a while yet. It’s still only day 8 and secondly I think you begin to process what you have been through and it’s been tough. I cried buckets at diagnosis, but have been pretty strong throughout all of the surgery and treatment. There are definitely better days for us all.
I am sorry to hear you have still bowel issues, I have problems with my feet. I really don’t think it’s PN, neither does my onc. I think, like you said, chemo finds your weaknesses and digs in. Let’s hope these grumbles clear up and that they don’t become long term side effects.
Go cat I am sorry you are still feeling breathless, I hope that passes soon. I’m glad your onc isn’t too concerned about the module on your lung, that bodes well. Fingers crossed that everything will go well for you. Scanxiety is horrid.
And Jayne- great you’ve got a surgery date too. You know, it’s great you can save your nipples. I am perfectly happy with my reconstruction. The anxiety beforehand was harder. It’s great waking up with boobs, it’s like you never lost them and you’ll have a great pair of perky ones. 😜 You’ll be in that bikini before you know it! I’m going to Spain in October and my goal is to be “ beach ready” and gorgeous by then😊
That’s brilliant news Jayne...and just one night in hospital isn’t too bad. Does this mean you won’t need rads? 💕😘
2 weeks since my last chemo and I still get breathless when walking on the flat. Have to stop every now and then when walking the dog. But as soon as I stop the breathlessness goes. Really strange.
Got a CT scan, in a weeks time, to check up on a lung nodule that I have. Onc doesnt seem that worried about it and says they are common.
Then will see onc 3 weeks after that for result and to discuss whats next. No RT for me as had it in that same area 10 years ago. And no hormone tabs as Im Triple negative.
Just seen my surgeon. Booked in for double mastectomy and implant recon on 21st May. Should be able to keep my nipples which is nice. One night in hospital and then around 6 week recovery after that. All moving on quickly but a holiday at the end of August looks like it may actually happen now.
Been reading all posts and will look at some of the exercise stuff once last chemo side effects have started to pass, and they are not really here yet so have that to look forwards to at the Weekend. Seems like we are all on the up slowly but surely and its great to read about us thinking of other things than chemo.
Live you all ❤️❤️❤️
Another few days and hopefully it will pass Sunnydaze. It was strange, I had low mood for a couple of days with this one and shed a few tears, something I hadn’t done even at diagnosis. Then I got annoyed with myself thinking why am I feeling down when I’ve finished chemo! I think there was a bit of anxiety for me also. On one hand pleased to not have to have these horrid drugs and on the other hand worried that I wouldn’t be having any more of these drugs that have been blasting my cancer cells! In general, I feel much better now, tired and still some bowel issues but I think that’s because it’s a weak area for me and the chemo has probably taken its toll. Just trying to muster up the enthusiasm to go for a little walk, not so appealing now it’s dull and cooler. You go easy on yourself and rest when you need to and look forward to feeling better over the next few days 💕xxx
I feel like a pile of 💩. My body has no get up and go. Low mood. I think I over did it yesterday. I was on here chatting a lot and did a load of cooking. I enjoy cooking, it takes my mind of everything.
I am definitely finding this last one a struggle in terms of body weariness. I want to shake it off, but can’t!
What about you Dikat you must be a good 15 days or so since your last chemo. Do you feel normal yet? I hope so.
Thanks for this info KC72 Much appreciated. I can now go well armed when I see my onc on the 10th May. Glad you got the endopredict test. It was never even mentioned to me.
Yes, my onc muttered about zoladex too, but like you it depends on my menopausal status. My periods stopped half way through chemo, so who knows. I think the zoladex. won’t be very pleasant and I’m hoping I don’t need the injections, but I’d rather give injections a go first of all and see how I get on rather than just “whipping my ovaries out” !
Loads of luck for the last chemo today KC72, it’s a lovely feeling knowing that you’ve finished. It’s certainly felt never ending and definitely torturous at times.
Hurray another finisher xxx👍👍🔔💕
I wasn’t given the full dimensions like you. Just told it was 26mm to start with and approx 8mm after 5 chemo - 3fec, 2 taxotere/Herceptin/Pertuzumab. Now I’ve had 6th & final chemo, hopefully it’s shrunk a little further. I’ve got to have 15 more of the targeted therapies Herceptin & Pertuzumab. They are by IV infusion every 3 weeks so will still need cannulating.
I guess you having radiotherapy will be a good thing, something else to throw at it xx
Thanks Sunnydaze and Dikat for your well wishes for my last chemo session tomorrow 😊
sunnydaze you asked about my treatment. I had sentinel nodes out first (1 affected) so I then had an axillary clearance same time as mastectomy and recon. No other nodes affected so was always told no need for me to have rads as nothing to blast. Chemo was the surprise treatment as on the endopredict score I am high risk of recurrence.
I started tamoxifen before chemo for a month, and there was talk of either zoladex or the doc said ‘whipping my ovaries out’. Not sure I want to go down that route. But with chemo stopping my periods guess we will need to work out where I am on the whole menopause journey. I see the doc on 7th May.
I asked for more of EC the original drugs which were fairly knocking the stuffing out of the tumor. Have been told that I have had the max of EC (which I dont believe as I had only 4 sessions). The original plan was chemo, surgery followed by Taxane . that appears to be altered now as when I saw the surgeon he said 3/4 weeks radiotherapy after surgery.
Hope there is no more chemo. I have been told no more chemo so will kick off if it is mentioned again. NO NO NO MORE CHEMO FOR ME
At some point i will start Letrozole and Zometa. What were the measurements of your lump.
PS as far as they can tell it has not spread to lymph nodes but a biopsy will be done during surgery.
Get yourselves some fitbits and then set up groups like a work week hustle then a weekend warrior together, it helps 👭👭you help each other step by step 😁😁excuse the pun, it gives you all a good 😂🤣😂🤣😂if someone has a sneaky shop and then uploads their steps and they find they’ve done 12,000 without realising 😂🤣😂🤣glad you are keeping chemo thread as home thread while you bounce off to rads and ops, our oct17 thread did the same and we celebrated when everyone had finished ❤️❤️After sharing the chemo journey together it was natural to 👭👭👭through the lot 💕💕✨✨Shi xx
Like you’ve said previously, it is a shame they didn’t pick up on that sooner so they could have reverted back to FEC. Could they give more FEC after surgery? X
It is now 23mm x 15mm x 24mm. after the first 4 ec sessions it had shrunk to 19mm x 17mm x 12mm. It seems it was a waste of time having 3 sessions of Docetaxel
Hi absolutely annie
Yes, it does seem we are following a similar path. Do you know what size your lump is now? Guessing it’s quite small if still on track for lumpectomy. Hope you get some answers from your oncologist. Keep us posted xx