Hi everyone, I hope you are all doing well xx
Vasanthy - Best of luck for your surgery xx
Thomaschix - Great to hear you are doing well. And love your photo! I will need to make myself one of those bags soon xx
Daisy - Best of luck for your surgery next week xx
I will have my last chemo on 26th. I’ve got a theory that it’s the filgrastim that’s causing my fevers because they’ve started on the same day and gone away after I stopped the injections will see what the oncologist thinks. Tracy x
My aunty made me a bag and I love it. The hospital gave me one too.
its definitely a must have!!!! If you look online there are patterns to make them. There’s also a site called drain dollies
Take mine out for a walk most days!
Glad to hear you are healing well Thomaschix. Not sure what you have with your drain or how it looks but my hospital gave me a neat bag to wear so it was easy to carry around. I think they were made by volunteers. I slept in it too. Best wishes to those having surgery soon.
Just in overnight thankfully.
Had a single mastectomy with full and anxcillary clearance.
haven’t been in much pain but I’ve been keeping a pretty strict routine of codeine and paracetamol every 3 hours or so. Tends to be more uncomfortable in the evenings tho.
take a pillow for the car journey home!
dont wear new white pyjamas the first few days as drain might be a bit weepy....wish id known that!!!!
do your exercises (I really notice on the days I don’t do them as much!)
drain has been ok thankfully, just a bit of an annoyance more than anything
any questions feel free to ask xx
So glad to hear you are recovering well. Have u any tips ? Did you stay in or a daycase ? Hows are you managing with drains ? Have u had much pain ? ( i hope you havent xxx )
Lots of get well soon wishes
im recovering well thanks. Still got drain in but had dressing off wound today and it looks pretty good.
hope you’re feeling ok about your surgery next week x
Just to wish you well for your surgery ?
How are you feeling now ?
Good luck with your last Chemo. Well done !
Hope everyone else is doing ok.
I went for pre op yesterday so fingers crossed for the 23rd. Getting rather nervous now xx
You may know, but just to be clear, Loratadine is an antihistamine. Good luck with talking to the oncs. So great yr tumour is shrinking Tracy! Xx
No one had mentioned using antihistamines for filgrastim side effects so I will ask about that.
I haven’t spoken to my surgeon again since the imaging after the 3rd chemo cycle. At that stage my lump had fragmented but I’m sure it has shrunk now going by what I can feel. All I know at this point is it will be July and probably a mastectomy. Last chemo is 26th June. Xx
Hi Artycart. My docetaxel was given over 4 sessions instead of 3. The oncologist said they couldn’t give the higher dose with the combination of drugs I was on as it would be too toxic. Fingers crossed they can reduce the dose for you. I certainly haven’t had the SE you have had but I know we are all different and I didn’t really have many with EC either. Only you know what you can do and as you say one more and done could be worth getting it over and done with. Definitely ask what the pros and cons of a reduced dose will be. 🤞🏻
I have taken an anti histamine with my filgrastim and it does make the joint pains more manageable and i have taken Epsom salt baths too. If this helps.
Have u had a date for surgery yet? Xx
Hi Vornsta, at this point I would prefer not to have another docetaxel but as I only have one left I think they will want to carry on as planned. The oncologist did say that he might reduce the dose if this happened again so we’ll see what he decides. If I have to go through this again I will hate it but at least I will know it’s the last time. I have noticed that my lump is much less easy to feel so hope that it is doing its job whilst making me so ill. Thank you for the suggestion re filgrastim. I will ask my team if that is ok to try for next cycle. Hugs everyone T x
Yay! Way to go Caead! 💪🎉 good luck with the rest of it!
I have heard loratidine (clarityn) helps with filgrastim pain if your drs allow that. Gentle exercise also meant to help.
I am 2/3 done on paclitaxel- 4 more doses left- yay! Just had a Lovely nap as I don’t sleep well on chemo nights due to the steroids.
As docetaxel is so harsh on you Tracy is it worth asking your team if weekly paclitaxel would be a good alternative? I am finding it ok and have heard that from many others.
Hope the break from chemo gets you feeling better Daisy. It must be hard worrying about yr son as well as having bc to deal with. I hope things get better for you both - sending love and hugs.
Vasanthy, Carisma, Thomaschix - hope all well? Have you got your pathology back T?
love and hugs brave women, we got this xxx
Congratulations on finishing chemo and good luck with the rest of your treatment too.
Your Nephew sounds lovely kind boy . Yes its strange how different trusts have different regimes.
Hope you soon feel better with finishing filgrastim injections. I finished hopefully my last one yesterday and got joint pains still. They are not the nicest but i suppose as long as the do there job ! Also give me an ache under my ribs and shoulder too !
Take care everyone
Caead - It must be a great feeling to be finished with chemo. So happy for you! Your nephew sounds like a cracking boy, very imaginative calling your drain a Juice Box 😃 X
Thomaschix - hope you are continuing to heal well x
Daisy - Good luck for your surgery when it comes and I hope you are feeling better now that chemo has stopped x
Sorry my chemo brain is not letting me remember where everyone else is in their treatment but hope you are all doing well - Vornsta, Vasanthy, Carisma everyone in the group x
Today I’m feeling marginally better so hope that I am on the road to recovery again. I think the filgrastim injections are making me feel particularly awful with the aching bones and joints so will be glad when I take my last one tomorrow for this cycle.
Hugs to all 🤗 T x
Hi all. I do hope everyone is doing ok. I am sorry that some of you are having a tough time of it. I think it is interesting that my trust give the injections to prevent white counts going down and others wait for the count to go down before they give them. I guess each doctor/trust has their preferred way. I’ve just come back from my last chemo session. Yay. 🎉Just the next two weeks to get through. I will still have to go every 3 weeks for the antibody treatment but I have been promised it wont have the side effects 🤞🏻.
Due to start the radiotherapy in 4 weeks but I will have the 15 sessions + 5 boosts. That will take 4 weeks in total. At the same time they will start the hormone therapy so I will be bombarded with everything.
Good luck to all with the surgery. My 14 yr old nephew was intrigued by my drain and called it my juice box. He asked what flavour it was when I saw him. On one occasion he asked which side of the car was better for me and was it ok when sleeping. He is apparently a wriggler and asked if I was.
How are you feeling after your surgery ? Hope you are doing ok ?
Hope you had a nice day seeing your son yesterday and that your temp is now ok.
Good luck with the surgery on 17th hope you are keeping ok.
Carisma / vorsta
Hope you are both doing ok and keeping safe xxxx
Love Daisy xxx
Thanks Vornsta . Thats is what i thought. ( The scan was pre booked before i experienced all the problems which resulted in surgery brought forward) .
Sending you best wishes too
Love Daisy xxx
Thanks for replies Shi and Daisy.
Daisy if your surgeon says the surgery won’t change with scan results then it sounds like you have made the right decision- What wd the point of the scan be when they will see what’s what during surgery and in pathology?
If you remain unsure ask your team again what difference the scan could make to the plan.
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