@naughty_boob Interesting as they haven’t said anything about it but I’m definitely piling on weight and while I’ve not been careful with eating healthier… it seems a lot . I have a follow up with the oncologist on 6th and I’m going to mention this … I’ve got congenital kidney disease so I’m surprised they aren’t checking kidney function tbh … they also aren’t checking my thyroid despite having interactive thyroid …
interesting though it seems I am dangerously Vitamin d deficient and had no idea so am on the highest loading dose of vit d possible … it probably explains all my aches and pains I attributed to menopause/long covid …
It also turns out that while my hb was ok but my ferritin always low … my serum iron was dangerously reference range … no wonder so felt so rubbish even before chemo but certainly after the first dose
I’m
Not surprised you were knackered after working at the food bank … however thank you for doing that … I think when you step in there it puts a lot of things into perspective … I’m always ever grateful to have a roof over my head
Have a lovely Christmas too …let’s hope 2025 tries harder to be better !! Xx
Hi Salbert I hope your well sweeti and things are moving forward for you
I’m doing really well and actually beginning to feel and look a lot more like my old self , my energy levels are getting better and I’m actually looking forward to Christmas this year, it was my 3 year diagnosis day on 14 December so very positive move forward.
How are you doing and feeling XX
I was very low Vitamin D just off deficient when I was having chemotherapy and got the high dose ampules and told I needed them for at least a year. I had always taken some Vitamin D as I always wore sunscreen but when I had my diagnosis I was told to stop all supplements . I had to query my Vitamin D levels as I was so fatigued and they said it was the chemotherapy but I pushed for the blood test and I was right. Proves we know our bodies!
Hello @Nikks, always lovely to hear from you as you were one of the first people to answer me and give me that desperately needed reassurance. I am so glad to hear that your energy levels are getting better, that is very encouraging. Sometimes we feel like we should automatically be back to our old selves when the bulk of treatment is over then find ourselves running out of energy and have to remind ourselves why. At least, I do. I went to the pub to see a friend last night and was hammered on half a bottle of wine. I literally had to go to bed at 8:30pm!
Congrats on reaching 3 years since D Day. We will always remember that date, won’t we. You are quite definitely on the up. Good for everyone to read that and know there is light at the end of the tunnel.
I am getting better all the time, thanks. Tonight we have a Christmas party at our local and tomorrow we are having a day in London and are going to see Waiting for Godot at the Theatre Royal and I am really looking forward to enjoying myself in a way I couldn’t do a year ago. However, I realise that I need to pace myself and can’t yet do what I used to. I’m learning not to overbook myself but it doesn’t come naturally!
I hope everyone is not pressurising themselves too much. So much is expected of us at this time of year but Santa has advised me that he gifts us all some SPECTACULARLY SELFISH TIME OUT FOR OURSELVES so we have no choice.
Thanks ladies! Had a little sob today about it all. Still dont regret my decision! But honestly its a lot to take in!
I ended up at hospital twice today, one of my drains broke so had to go in and replace it, they given me spares though and showed us how to change them. Then i got back.home and my nurse called asking me to go back in and i can have the left drain out! Which i was happy about so i was happy to go back up.
Anyway im sat watching films with a chinese on way, had a nice nap too. Bit sore obviously in places! Hope everyone as a good weekend. Are we all ready for christmas? X
Great to hear of your plans @salbert looking forward to getting to this point
@jeml I hope you continue to heal and that it’s a speedy recovery!
Day is 11 past third infusion and feeling much better. I have experienced a lot of insomnia this round, does anyone know if sleeping tablets can get prescribed for future rounds?
Also out of interest is it standard that HER2 +ve women have to be on a course of medication after phesgo for a number of years?
Thanks
Hope you are not too rough over xmas! Just try and rest as much as you can, keep hydrated and make sure you got snacks on hand.
I did enjoy it thank you. I even have left overs haha. Im getting as much rest in too as much as i can before xmas. Cant believe its here in a few days! Looking forward to seeing my little one wake up knowing santa as been x
Aw i know they will definitely cheer us up through this they make it all better
I hope you get well rested, yes im going to do very little and try drink loads of water got 10 days worth of the jags this time instead of 5, hopeing the bone pain is managable this time x
I never got bone pain i was sick instead! Would have rather have bone pain i hate being sick. I hated those injections. Why you got more this time? I always just had 5 days worth.
They do get us through it. I seeing my little one today for first time since tuesday
Aw lovely enjoy seeing her will definitely help, my oncologist gave me more since last time i ended up on antibiotics so hopefully more will help this time yeah the bone pain gradually got worse but got better after day 5. Ive got a heated blanket to wrap up in and stuff for baths xx
I have spent the last few week in the early hours of each morning trapped in a rabbit hole wearing concrete boots. It was a lonely and dark place. Then I found this thread.
It has been like reading a story and as it has unfolded there have been new characters who have taken me across the country. I’ve had glimpses into lives when the new characters introduced themselves, their families, work and their BC experience.
As fast as I have read it there were more posts. I finally read the one thousand five hundred and tenth post this morning and decided I felt ready to emerge from the hole and reach out!
Here I am joining the story….
Thank you for sharing yours. It has been so helpful.
@purple_rain what medication are you talking about post Phesgo?
I had Herceptin and now on Aromatase Inhibitor Letrozole for the ER+ and zoledronic acid for bone improvement and to help prevent any breast cancer in the bones. I’m not aware of other medication. I believe the Herceptin/Phesgo was the treatment for HER2+
Maybe you could call or message the BCN nurses * Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Hi @mrsjelly welcome to the thread. Maybe when you feel like it you can share your story with us.
I had clear lymph nodes but it was part of my treatment plan. Could be age aswell as I’m 55 and higher risk of osteoporosis as you get older.
I didn’t have a dexa scan as they said I was having the treatment. I have read that some don’t get offered bisphosphonates but have Dexa scan to see how their bone density is, then depending on the scan will depend if they get offered it. Some have tablets such as ibanadronic acid.
Thanks @naughty_boob yes I meant medication after phesgo. I’m assuming it’s tailored to each individual? Would everyone with her2+ve have zolandric acid?
Just catching up after spending two days on a steroid high sbc now crashing down to earth
Side effects from round two (pain( kicking in nicely now … I’ve got steroid induced diabetes … the joy … and had to trot up to MAU today as there was a concern the chemo had leaked into the surrounding tissue in my hand . However the nurse practioner just thinks it’s severe bruising or vein flare … I’m not 100 percent convinced as it’s dark red but she said to ring again if no improvement in 24 hours
@naughty_boob yep they told me to stop all supplements … any other time no one seems to care about Vit D deficiency .even if you complain of symptoms ……. my gp won’t even test for it … I was shocked to find I needed high dose loading dose vitamin d … I might actually feel better after chemo
@shannon27 how are you feeling ? I don’t have the bone injections … they sound horrific … but the herceptin and abraxane cause me enough pain
@salbert how was the night out ? I’m glad you are able to enjoy Christmas more this year … I was reading that the average course of chemo takes at least 8 months to start to recover from so we shouldn’t expect too much if ourselves for a while after finishing treatment x
@mrsjelly Welcome x As @naughty_boob says … please feel free to share your story … have you recently been diagnosed ? X
XX
got 10 days worth of the jags this time instead of 5, hopeing the bone pain is managable this time x
