I have a date for surgery on 23rd June . They have moved surgery to private hospital due to Covid. Im having a single mastectomy with Axillary node clearance. I have pre op on monday. I was due a ultrasound scan which was also on monday but i had a bit of anxiety in deciding what to do. The surgeon said the out come of the scan would not change the surgery i would need so its up to me whether to go or not. My white blood count has fallen really low again over last 2 days to 0.2. So theu have started me on antibiotics and filgrastim injectiions for 3 days. I have cancellled scan as thought it is another risk to take at different hospital department and it is only something else to increase my anxiety when it wont change the outcome of surgery anyway. The last half way scan showed decrease in Tumour by half . Lymph nodes remained the same. I hope ive done the right thing ????
Love Daisy xxx
I have a son aged 15 so would be year 10. He has also been poorly over the last 2 years with chronic fatigue syndrome which started from bacterial tonsillitis and glandular fever. To be honest its been a very difficult 2 years as this had impacted greatly on his health and school life. We were just about to start a clinical trial in Bath in January but then i was diagnosed which has pushed everything behind. With regards to Covid situation i wouldnt be sending my son due to his low immunity but even if this wasnt the case i dont think i would send him anyway until there was more reliable guidance. Its a very difficult decision to make for people.
Its hard when self isolating to know whats best as the goal posts keep changing regarding up to date government advice.
Take Care and Stay Safe
Vornsta please check with your unit and go with their instruction regarding your children, I know you want what’s best for them, but you need to keep yourself safe ❤️💕💕✨✨Shi xx
So glad surgery is all over for you and hope each day is better and you manage to get some rest. Sending you lots of love
So glad that you are back home in time to see your son tommorow for his 21st. Hope antibiotics kick in and you are nearly there. Xxx
Tracy - great news you are already home, enjoy the celebration tomorrow!
Thomaschix- great you are at home and ok!
Carisma- yay! You are done with chemo, hope the symptoms settle soon
Daisy, thank you, how are you?
Does anyone else have school aged children who are invited back to school? Are you sending them back? I feel if I do I would need to shield from my children again at home due to Covid. Anyone had any advice from the hospital on how to manage shielding with a family who are going out?
best wishes to all
Hi everyone, Hope you are all doing ok as we get through this treatment xx
Glad to hear you’re home and surgery is done Thomaschix. Best wishes for a smooth recovery. Xx
The hospital has allowed me home With more antibiotics. Docetaxel is seriously tough but only one more to go. It’s my sons 21st birthday tomorrow So it will be nice to see him through the window and have a shielded birthday celebration.
Hugs to everyone 🤗 xx T
How are you doing Daisy? Any more news on treatment plan?
I’m doing ok. Sore and tired but at home on the sofa so all good
hope you’re feeling better Artycart and great news on your final chemo Charisma. The end is definitely in sight!!!!
So glad to hear that its your final treatment for you and then can get radiotherapy done asap. Must be such a relief for you.
Sorry to hear you are having such a rough time with your Temp. How are you feeling today ? Sending you lots of love and best wishes .
How are you feeling following surgery? Sending you lots of love xxx
Hope you are keeping well and doing ok xxx
Sending you lots of love and best wishes xxx
My appologies if i have forgot to include anyone and sending u all my best wishes
Hope you're recovering well after your surgery Thomaschix, Arty hope they manage to sort you out quicker this time and Daisy, hope you're doing better now.
Docetaxel #3 has been pretty tough going for me but nothing compared to some of you - I have had little strength in my legs and needed support from furniture, walls, kitchen units, etc to get around. Feeling a little better today but still spasming occasionally. However, it will be the last time I feel like this so that's the positive.
Had a video call with oncologist this morning and the next step will be radiotherapy - 5 sessions with the equivalent radiotherapy that used to be given in 15 - hopefully should have my assessment appointment in the next 2 weeks and treatment within the following 2 weeks. Then Letrozole for 5 years and Zolandronic Acid infusions for 3 years. I can definitely see the light at the end of this tunnel!
Stay strong everyone and remember - this isn't forever. If there was ever a good time to have chemo this certainly wasn't it!
Thomaschix - Hope you’re doing well after your surgery x
Daisy - Hope you’re doing better now x
Hope everyone is doing ok this week x
Im back in hospital again after my 2nd Docetaxel. Temp again. Not as bad as last time but they wanted me in to check my bloods etc. Things are moving much quicker this time and they already have me on IV antibiotics so hope to get out more quickly this time. Waiting for another covid test! Worried about what this will mean for my Last treatment xx T
Good luck for the surgery Thomaschix! I got thru single mastectomy and reconstruction. All the staff were so lovely, I am sure they will be with you.
I am ok thanks Vasanthy, trundling through last few pacli, roll on finishing chemo!
all the best everyone x
Best wishes for your surgery tomorrow. Sending you lots of love
Hope everyone else is doing ok too xxxx
hope you doing ok after the 6th cycle . One more to go right then yaay.
yes I am waiting for it to finish
thomaschix all the best for your surgery tomorrow
daisy - hope you are so relieved with your new treatment plan and all the best for your surgery. Will pray that you won’t be needing any more chemo after surgery
charisma and vornsta hope both of you doing well
All the best of luck for your surgery on the 17th xx I’m sure it will be a relief to finally have it done xx T
So glad to hear you’ve got a new plan and that your surgery will be done soon. Sending you hugs and hoping that this plan lets you feel better and stronger xx
Thomaschix - Sending you hugs and best wishes for your surgery on Tuesday xx
My 6th cycle went well yesterday. Still feeling ok today but expecting that to change once I stop taking steroids and start filgrastim today. Fingers crossed no temp this time. T x
how are you doing?
my surgery is Tuesday so had all my pre-assessment tests and just making sure I have plenty downloaded on the iPad to keep me entertained! Had my first herceptin/pertuzamab without chemo yesterday and feeling quite tired and achey today but that could be a side effect of working too much to get ready for taking time off for surgery rather than the treatment itself!!!
have you had any more news about your treatment plan?
When is your surgery scheduled for ?
Hope you are ok and is it this week you are due your surgery ?
How did your Chemo go ?
Hope everyone else is ok too
Ive been to see consultant today who has booked me in for mastectomy with Axillary node clearance for 23rd june . This is being done at a private hospital due to covid. He said will then need radiotherapy for 3 weeks and depending on histology ? Chemo but told me not to worry about that yet as he is aware of all the problems i have had.
I think i feel relieved that something is happening but scared too .
He has said i can go as a day case or stay over night .
Anyone share any thoughts on surgery and recovery etc ?
Love Daisy xxxx
I am going to have a lumpectomy and auxiliary mode clearance. I have his shoulder pain which the dr said is an side effect of chemo. Apart from that I am feeling ok
Are they saying that you will be having chemo definitely or they will decide depending on the pathology report after surgery.
How are you feeling now . Hope your side effects have reduced now
Thats good news . Do u know what surgery you are having ? How are you feeling?
I had a call yesterday to say they are going to bring my surgery forward . I have got appt to see breast consultant tomorrow . It looks like mastectomy with Axillary node clearance but said i will need more chemo then radiotherapy afterwards. I have got myself into a panic at the thought of more chemo just because of the reactions i have had .
Hope you are all doing ok and send u lots of love
daisy - hope your health has improved now.
carisma - congrats on finishing your chemo
Tracy- hope your chemo on Friday went ok .
i had my mri on Monday and today had an appointment with my gp and they fixed my surgery on 17th June.
Hugs to everyone
Daisy d ❤️ You are still you ❤️ Just having a roller coaster ride for a bit at the minute ❤️ Try and focus in on the finishing treatment line, it’s there just ahead of you now 👭 you are doing amazing even if you don’t think you are 👍💕💕✨✨shi xx
Hi Thanks Shi
I have spoken to oncologist yesterday and gp today . They are discussing me at MDT tomorrow to see whether moving to surgery now would be in my best interest due to all side effects . I seem to have big issues with my bloods going too low then to high and all medication im hyper sensitive too. Ive reacted to all pain meds and the steroids. Also the filgrastim injections too. Ive had neuropathy in fingers and feet. Two lots of antibiotics. Low magnesium and low pottasuim . Stomach issues /Back pain and Gastric reflux . The worst is tightness in throat pressure in ears and tingling all across face. Then anaphylactic reaction requiring 999 on wednesday to the chemo.
I have spend the majority of time not being able to move from the sofa . I managed 9 paclitaxel/ carboplatin and 2 EC with the last one causing the reaction.
Just hope when i go for scan there is a decrease in Tumour and lymph nodes.
Just struggling at moment and would do anything to be back at work and be me again.
Hope everyone is doing well and i send you all my best wishes and its so lovely to post and recieve all the support it makes me realise that.im not alone in this horrible journey.
I know we may never meet but i do think of you all and wonder how u are doing
Hi daisy d, please check with your team again about your se’s just to keep safe ❤️ Chemo is a strange thing and you never know how body is reacting, so please phone your unit again and tell them all se’s ❤️💕💕✨✨Shi xx
Thank you so much Vornsta. Really appreciate all of your support .
Hopefully tomorrow will be a better day and a plan will be put in place for me .
Thank you all for your support
Daisy, as everyone has said, no need to apologise, I am so sorry things are so horrible right now. It will get better, you will get through this and there are much better times ahead.
carisma- yay to finishing chemo!
best wishes to all
Sorry you are having such a rough time and please don't ever feel the need to apologise. That's what this forum is for - to support people through the bad times and celebrate the good times.
I hope you get some answers and respite soon.
Thank you shi . Ive completed x9 paclitaxel/carboplatin and 2 Ec treatments . Face still swollen and ears feel like got pressure .
Love Daisy xx
Daisy d ❤️ We’ve got you 👭👭you maybe bouncing on the chemo bungi cord just now, but this is t for you it can be a 💩 your team will do what’s best for you, do ask them questions ❤️ Sending you big 👭❤️👭💕💕✨✨Shi xx
Hi Daisy. Please don’t apologise, we all just want you to feel better and are always ready to hear how you’re feeling whether it’s good or bad. I hope the doctors can get this sorted for you as I know when you feel so unwell how your mindset changes or mi e does anyway.
You will soon be through this and it could be a good thing if your surgery is brought forward. Sending you hugs xxxx T
Well done on finishing your chemo and the end is in sight. So pleased for you.
Glad you are feeling better and hope your ok for your next treatment on Friday.
Ive not been to well ended up 999 due to experiencing anaphylactic reaction to the chemo on wednesday . This happened about 5 hours after administration. Ended up in AE till 4am . They didnt want to keep me in due to Covid situation. Had high dose of steroids but still not feeling very well. Also my magnesium and pottasuim levels have dropped. Been back for bloods and now my White blood count has gone far to high. So fed up of it all now. It feels like im going from one problem to another. I am being discussed tomorrow at MDT meeting as i think they are looking at bringing surgery forward . They are not doing any reconstruction surgery but i just cant carry on like this for much longer. My throat is still so tight and ears tingling/ blocked. Each day i wake up hoping to feel better.
Sorry its a negative post as i dont wish it to be as everyone is doing so well.
Thanks to everyone - even the text gremlins 😂
I'm in Scotland too Tracy so no changes for me yet either - I don't think I'd be comfortable going out just yet even if we had eased the restrictions - I want to make sure my immune system (which in normal times is very good and I have no underlying health issues) is back to what it should be.
My head hair started growing as soon as I finished FEC although it is very slow - but I lost my eyelashes and most of my brows with Docetaxol - as you say, very strange! I thought I was lucky with my nails as although discoloured and brittle I haven't lost any, but I was speaking to one of my chemo buddies today who finished 6 weeks ago and she said it was after she finished chemo she lost some of her nails 😫
So glad to hear you’ve finished chemo Carisma xx It must be a great feeling which I am very much looking forward to myself. I hope I have a similar experience to you with the effects being less. I will have my second Docetaxel on Friday as I have been fine since getting home from hospital last week.
Have you found your hair has started even though chemo is not finished? I am seeing some signs of some hair growth though my eye lashes and brows are almost gone. Very strange!
How is everyone else doing? Are any going out now that the government has eased the shielding rules? I am still locked up in the house as I am in Scotland and we have not had any changes here yet. Not sure if I would be ready to go out and about even if they had.
Hi - hope everyone is doing well.
Had my last chemo session today- it feels a little weird! I can hardly believe how quickly the time has passed. I will still need to visit the unit every 6 months for Zolandronic infusions but that's nothing compared to chemo.
Have a video appointment with oncologist next Wednesday to see about radiotherapy but I finally can see the beginning of the end of my journey (fingers crossed).
My side effects from the second round of T were not as bad as first time so I'm hoping for the same this time. I've really had quite an easy time compared to some of you - and I had all my surgeries before chemo so I don't have to face that.
I will also be on hormone blockers for 5 or 10 years - I can't remember which.
I'm hoping my shielded status can be lifted soon - something else to ask my oncologist! I cannot wait to get out for a walk!
Thanks for your reply Caead. I will be doing radio too, then hormone blockers - kitchen sink 🤣 I have been told that having a positive mental attitude and visualising being healed helps a lot as well as managing stress, lots of fruit and veggies and regular exercise. Can be hard not knowing if anything is working though. I guess most of positive mental attitude is working on just holding the faith that it is all working and our bodies are healing.
Great you are feeling better Tracy 😊
best wishes to all
Hi Vornsta, I’m feeling a lot better now. I have been given a phone appointment with my oncologist I think to discuss whether I am well enough to go ahead with the 2nd docetaxel. I hope that I can go ahead and get this last hard bit over with xx
Hi daisy, back in 2017 surgery 1st, therapeutic mammo plasty, then 3 fec and should have been 3 t but had 2 t and then another fec because of reaction on 2nd t. Then 15 rads and 5 boosters. I was naughty and googled the surgery I was going to have and watched what was going to happen while I was under and for me that worked because I knew what would be happening if that makes sense? I know we are all different and that wouldn’t work for everyone but I found it helped me at the time for what I needed to do for me. Always do what’s right for you ❤️ You put yourself 1st ❤️💕💕✨✨Shi xx
Hi All, sorry to hear people have been having a tough time. Hope your teams manage to sort it for you and you start to feel much better soon. Vornsta I had surgery pre chemo. It wasn’t the planned course of action but they couldn’t confirm the her2 result so went with surgery first. I know what you mean. People ask me if chemo is working and if they are checking it. I was told surgery had removed it all. The chemo was to stop it coming back and to catch anything that might be undetectable but left untreated could form elsewhere. I still have radiotherapy to go as well. I guess they may do scans or staging test later but as far as they were concerned it hadn’t spread beyond lymph. As you say you just have to trust them. They are certainly throwing everything at me.
Best wishes to everyone.
Hi Daisy, sorry to hear that, hope your team gets a good plan going soon.
Am I the only one here who did surgery pre chemo? Seems like it right now. I envy that you can monitor chemo response when you have surgery afterwards. I have no idea if it is working or not. Just have to go by trust. I reached paclitaxel half way point today. 6 weeks to go.
hope it is going well at home Tracy, was next chemo delayed?
best wishes to all
Thank you Shi. I will ask the questions to what would be the best way forward . Did you have surgery before or after chemo ,? Xxx
Sorry to hear you’ve had a reaction to your chemo. I hope your oncologist will sort something out for you as you’re so near to finishing now. Thinking about you and wishing you all the best xx
Daisy ❤️ Sorry to hear you had reaction, I did on my 2nd t back in 2017. When I saw my oncologist after before my 6th and final chemo they said I could have abraxane or I could have another fec, I had another fec, so don’t forget to ask questions ❤️ Keep close eye on yourself and rapid response if anything not quite feeling right ❤️ Keep safe 💕💕✨✨Shi xx