Hi everyone, went to my slimming world group this morning. Now at the lower end of my target, which I'm pleased about. Can go away and not worry to much about what I'm eating.  I want to weigh the same for surgery, as when I went to see the surgeons. Feeling really rubbish today, I'm shivery and ache a lot after having the Zoledronic acid and phesgo. My ball and socket joints at top of legs have been aching for a few weeks now, but is far worse today. I know phesgo can cause aches, but I didn't have it when first starting on this. So it is a little bit concerning, I get worried that cancer has spread. Not going to mention it to anyone until after my surgery, as I don't want them to delay my surgery. Walked into town after group and struggled to nake it home. Typical, on the one day hubby not around.

Hi Greeny80, so pleased that you have now finished radiotherapy and don't have too many issues. Glad to hear you are away in Jersey with your family. I'm sure it's just what you need to recharge your batteries. Xx

Hi Carol, definitely not liking the after effects of the Zoledronic acid, but can't complain as I've had a pretty easy time up until now. Pleased you're now booked into your moving forward course, I think it's something I would be interested in. I've felt fine through treatment, but concerned how I will feel when everything stops. I think you feel safe when you're on treatment and there's always someone to chat to, if you have any worries. Would love to hear how the course goes. Xx

Hi NGS, hope your recovery is going well and you're feeling OK. Did you have any side effects after your Zoledronic acid infusion?

Xx

Hi Pippin 

just a quick reply - will reply in length bit later but parents are here 

what you are feeling will be related to Zoledronic infusion.  I ended up in hospital as combined mine with a round of docetaxel and I couldn't even stand the pain in my bones was so severe and I was shivery and flu like.  
Im certain this is what you are experiencing so please don't dwell too much on the cancer 

xxx

Thank you so much for taking the time to give me some reassurance. They had suggested I have the Zoledronic acid on the same day as the phesgo, to save me an extra trip to the hospital. Definitely won't be doing that again, I felt about 80 when I walked home from town this morning lol! I am feeling a bit better this afternoon, thank goodness. Xx

Have a lovely time with your parents. Xx

Hi Carol, feeling ok today and went out for a walk this morning. I had the phesgo along with the zoledronic acid, so this probably didn't help. They suggested having it the same day, to avoid an extra trip to the hospital. Definitely wouldn't do that again! The infusions are only every 6 months, so not too bad. When do you start the Ibandronic acid tablets? Side effects may be different when in tablet form. It's good that you have the review, so that you can ask the questions that you need to. Apparently the tiredness is a known side effect of radiotherapy, I've heard a lot of people mention it. Enjoy the long weekend and meeting up with your friends. Be sure to get plenty of rest, take care. Xx

Hi Pippin, Glad you're feeling better today.  I am supposed to have started the Ibandronic Acid tablets already, but I've delayed it until I'm fully recovered from radiotherapy, as it advises not to start two new things at once, in case of side effects and them being able to identify the cause.  I am hoping to have infusions instead of tablets as the tablet regime is a nightmare.  Can't eat or drink 6 hours before taking them then can't eat or drink or take any other medication for 1 hour after taking them.  I take other meds which also need a gap between taking them and eating and I feel so sick at the moment if I don't eat within about an hour of getting up.  Also with the Ibandronic tablets I can't lie down for an hour after taking them either, so I couldn't even take them, then go back to bed!  All this is sort of manageable at home (except I fear I will forget to take my regular meds if I can't retain my current routine - I'm so forgetful at the moment!) but would be a nightmare if/when I go on holiday!  I will speak to my consultant next week about having them as infusions (his registrar did mention it is an option when we spoke 6 weeks ago) and hopefully I can go down that route.  I think it's the same schedule, about every 6 months.  It would be so much easier to manage!  I'm not sure why the option wasn't offered at the outset, but hopefully I'll find that out next week too, if the answer is "no" to infusions. 

Very fed up with it all now.  Just want to get back to normal and get my life back!  I'm already approaching 61 so I don't have too many years that I can afford to lose many more ! xx

It makes sense not to start two new things at the same time, think our bodies are going through enough. That sounds like a right performance with the tablets, hope you manage to swap to infusions. How ofter do the tablets have to be taken? I set the alarm on my phone for tablets, or I would definitely miss them. My head is all over the place at the moment. Things I mean to put in the fridge, I suddenly find in a cupboard lol! We are similar ages, I'm 62 in October, so this all does get a bit tiring. I was hoping to be finished treatment before end of 2024, but not sure that will happen. Would have been nice to start 2025 with treatment finished. Stay strong, you've got this. Xx

Hi jolamine 

did you take letrazole after your mastectomy ?   I have suddenly come out in itchy rash around my scars.  Not a septic rash;  no temperature etc.  but only thing different is I started  letrazole last Tuesday.  

really do not want a trip to a and e on bank holiday Monday 

xx 

Hi NGS,

Yes, I did take Letrozole after my double mastectomy, but never had a rash around my scars. I hope that you managed to get through the Bank Holiday, without having to go to A & E. If so, why not phone your breast care nurse on Tuesday and see if she can do anything to help you? Please do let us know what she advises.

Kind regards,

Jolamine xx