Hi everyone, just wondered how you are all getting on. We've had quite a busy time, unfortunately with funerals. Had 3 in the last week, 1 over in Ireland. Supposed to be having my reduction done within the next couple of months, which I'm happy about. This time will just be a day surgery. I've got my second zoledronic acid infusion on Tuesday, last time it made me feel a bit fluey, so will have to see how it goes. The letrazole that I'm taking does effect my joints, usually when I'm in bed, but improves when I'm up and about fortunately. Well I hope you are all doing well, would love to hear from you  xx

Hey Pippin, 

So lovely to hear from you. I've been meaning to message on here for ages!...you beat me to it.

I'm so sorry that you've been to 3 funerals recently. That's sad, i'm sorry.

Good news about getting your reduction done soon though. Keep us posted and great it's just a day surgery too.

I think i'm due to have my first zolodronic acid infusion in March...hope i  won't feel too fluey afterwards. How long did you feel under the weather for after your last one? just a couple of days?

All ok over here, feel like my hormones have levelled out a bit so other than a few waves or nausea and some sporadic night sweats i'm doing ok! Feeling more energised and althouggh my fitness isn't where i want it to be i'm hoping in time i'll get it back! I've actually taken the plunge and signed up for. Personal Training and Nutrition course wiuth an added module for nutrition in menopause!.....I started a couple of weeks ago and hoping i'l pas within a year. I've been talking about doing it for years so i'm glad i've finally bitten the bullet! The course started off fairly low key but ramped up pretty quickly and it/s suddently got very scientific already, learning about different muscles, the part of the skeleton, different joints etc! Wish i had paid more attention in my biology classes at school!! It's a bit of a shock to the system using my brain again but it's good!! Feels good to be learning again....

I sadly heard the news that a good friend of mine has been diagnosed with stage 4 bowel cancer which has spread to her liver so i'm feeling a little sad about that. Really hoping the chemo zaps it and shrinks the tumours so she can then have surgery. I feel sad as i know she''ll be going through all the feelings i had and that she'll have a tough year ahead of her...but trying to stay positive and hopefully becuase i've been through similar (although not bowel or stage 4) that i can be of some comfort and help to her...i just feel a bit sad....and another friend is starting chemo on Friday for triple negative breast cancer....just seems to br rife at the moment...just grateful medicine has come on so much over the past few decades....

Sorry to off load that to you!!!

Otherwise i'm good.

Would love to hear from everyone else too and your news or any health updates. 

Sending lots of love xx

Hi Greeny80, so lovely to hear from you. It's sounds like you're doing amazingly well. Great to hear about your Personal Training and Nutrition course. It sound really interesting, especially the module on nutrition in menopause, that could be so useful.

So sorry to hear about your friend's diagnosis, that must be so difficult for you. It's especially hard as she is stage 4, I'm sure she'll be glad of your support and advice when going through treatment. Very sad that you also have another friend also diagnosed, hope all goes well with her chemo on Friday. My sister-in-law has just died of secondary breast cancer, but she did stop treatment when she had breast cancer, due to so many side effects. Also my daughter's sister-in-law has stage 4 breast cancer and she is only in her forties, with teenage girls. It is just awfully sad how many people seem to be getting diagnosed. 

With regards to the Zoledronic acid infusion, I only felt a bit fluey the following day, but was fine after that. I'm due my second one tomorrow, so will let you know if I'm the same after that one. 

I'm still having a few hot flushes since starting letrozole in November, but I am taking another tablet, which does help relieve them. The letrozole is a hormone blocker which I have to take for 5 years.they also cause pain in the joints unfortunately. But luckily it's not so bad during the day, when I'm moving about. A bit of a nuisance during the night though. 

Let me know how the infusion goes and good luck with your studies. Xxx

Hi Greeny80, so lovely to hear from you. It's sounds like you're doing amazingly well. Great to hear about your Personal Training and Nutrition course. It sound really interesting, especially the module on nutrition in menopause, that could be so useful.

So sorry to hear about your friend's diagnosis, that must be so difficult for you. It's especially hard as she is stage 4, I'm sure she'll be glad of your support and advice when going through treatment. Very sad that you also have another friend also diagnosed, hope all goes well with her chemo on Friday. My sister-in-law has just died of secondary breast cancer, but she did stop treatment when she had breast cancer, due to so many side effects. Also my daughter's sister-in-law has stage 4 breast cancer and she is only in her forties, with teenage girls. It is just awfully sad how many people seem to be getting diagnosed. 

With regards to the Zoledronic acid infusion, I only felt a bit fluey the following day, but was fine after that. I'm due my second one tomorrow, so will let you know if I'm the same after that one. 

I'm still having a few hot flushes since starting letrozole in November, but I am taking another tablet, which does help relieve them. The letrozole is a hormone blocker which I have to take for 5 years.they also cause pain in the joints unfortunately. But luckily it's not so bad during the day, when I'm moving about. A bit of a nuisance during the night though. 

Let me know how the infusion goes and good luck with your studies. Xxx

Hi Pippin24 and Greeny80   I've been meaning to catch up on here for a while but I've been extremely poorly.  I was quite unwell over Christmas, putting it down to flu/winter bug etc etc, then I had some blood tests done as I just wasn't getting any better.  They were done on the Thursday evening at the end of January and at 5.20am the next morning, I had a medical clinician knocking on my front door saying I needed to go into hospital immediately as my kidney function was down to 19%!  I spent 4 days in hospital and things seemed to be improving, so they sent me home on the Monday evening.  By Tuesday afternoon I was back in with severe vomiting and the other end (at the same time, not pleasant!) and put on a drip and in isolation.  I then got caught between the renal team and oncology's different approaches to treatment and trying to understand what had happened.  After a couple of days of deliberations, they came to the conclusion that I had had a reaction to the immunotherapy again and it had caused the inflammation of the kidney.  I also had a kidney biopsy after being back in hospital for almost a week, then they put me on high dose steroids (which I hate, and I don't do well on!).  The kidney function was improving slightly each day though and I was eventually discharged after 8 further days in hospital.  I was back at the renal clinic yesterday and thankfully function is now improving and has reached 48%.  I can now start to reduce the steroids (thankfully!) and hopefully my balloon face will start to subside!  Zoledronic acid infusion was postponed and has been rescheduled for 26th Feb, blood tests allowing. 

Honestly, I really feel like the cancer didn't kill me, but the treatment still might.  

So sorry to hear about both your friends/family diagnoses.  There just seems to be more and more about at the moment. I don't know if they're just capturing more or if it is getting more common.  

Good luck with your first zoledronic acid infusion Greeny80   I was a bit fluey for a few days after my first one, so I would suggest keeping a couple of days clear in your diary if you can to just rest and recover.  Other than that, so far no other major side effects on it.  And thankfully it only takes about 15 minutes to infuse, so you won't be there for hours like we were for chemo. 

My body has had enough.  Mentally and physically I feel exhausted.  I am back to work today (I couldn't afford to be off any longer) but don't plan to do a full day.  I have a meeting at 2pm for 30 mins, then I'll probably call it a day after that.  I think I went back way too early and too full on after my treatment ended in November and my body has sent out warning signs to take it easy and not think I'm super woman and can go straight back in to 100% life straight away. 

I have also received an appointment for my first follow-up mammogram in April, almost a year to the day after my surgery.  No doubt I will worry about that endlessly until the results come in ... 

I hope everyone is doing ok and speak again soon. 

Carol x

Oh my gosh Carol1964  sounds like you’ve been so poorly. I’m so sorry. Sounds horrendous and worrying..I’m so glad that your kidney function seems to be improving, keeping everything crossed it continues in that trajectory.

i had flu in Jan and it was awful!…I think worse than chemo! Totally wiped me out for 2 weeks…they made me go into hospital as my temp was so high and they were worried about my neutrophils etc but luckily they were ok…but I can only half imagine what you were going through with your kidneys. You poor thing…these drugs and the side effects are a constant worry and balance. Hope you’re start to feel better soon but definitely get yourself home after your 2pm appt! In fact it’s already 5pm here so I definitely hope that you’re home!!

good that you have your mammogram booked in…the amount of surgery, chemo drugs etc that we’ve had pumped into us I would be amazed if it doesn’t come back all clear so positive thoughts heading your way….scanxiety is real!!

take care ladies and catch up very soon! Always here for any off loading needed! We may have got through the big stuff, surgery, chemo, radio but the road sometimes seems long and the treatment and side effects still very much present so seeing everyone some strength and positive vibes!

have a lovely evening xx

Oh Carol, so sorry to hear you have been so poorly. It must have been so scary having someone knocking on your door, telling you that you needed to go to hospital. I do think they try and push you out of hospital too quick, when you're obviously not ready. Why are you on immunotherapy and for how long?  It seems everyone's treatment can bee so different. Glad to here that your kidney function is now improving, did they say how they can prevent that happening moving forward? Hopefully your zoledronic acid will go ahead on the 26th. I had my second one on Tursday, along with my 14th phesgo injection. It must be so hard having to work, when you really need to rest. Hope your mammogram goes well in April, think we'll all worry when having them. Waiting for results is the worst thing of all. Take care of yourself. Xx

Hi Pippin

I was so surprised when someone knocked at the door - especially at that time in the morning in the middle of that big storm we had!  Luckily I have a Ring cam doorbell so was able to check who it was before opening it (didn't fancy opening the door to some random stranger at that time of day). 

I have been on immunotherapy since the start of my treatment.  I was having it alongside chemo, then it continued after my operation and radiotherapy.  It is supposed to help reduce the risk of the cancer returning in the future, but clearly comes with its own issues.  I had my last immunotherapy treatment in November and was feeling great, until all this happened at the end of Jan.  Still, at least now they know what caused it, it is getting better and as treatment has now finished, they're optimistic it won't happen again.  Just the zoledronic acid infusions to survive now lol.  

It is tricky having to work at the same time, but my employer has been absolutely amazing, especially as I had only been with them for 3 weeks when I got my initial diagnosis.  I live alone, so I need to work to keep a roof over my head.  They are being very flexible with me though and if I need to take a break during the day, I can.  My manager isn't a clock watcher and is more interested in delivery than hours worked but at the same time, if I'm struggling, she's very good at supporting me to extend deadlines and manage project managers on my behalf (thankfully!).  It seems I'm the only one who is putting pressure on me lol.

I am using up annual leave until the end of March to do a 4 day week so I can get a good rest in between.  Here's hoping I keep well and stay out of hospital for a good while!  

Hope you're feeling ok after your infusion and phesgo injection. 

xx

Hi Carol, so lovely that your employer's have been so supportive. It must have been such a worry for you, getting diagnosed after just starting a new job. I never had immunotherapy during my treatment, just phesgo, which apparently is a targeted drug, which also reduces the risk of the cancer returning. It really is quite amazing, all the different treatments that are available, for the different types of cancer. It must be a relief now that the immunotherapy is  finished. Hope all goes well with the Zoledronic acid, let me know how you get on. Take care and keep well. Xx