Hi everyone, was great to finish chemo yesterday and get to ring that bell at last. They observed hubby giving first phesgo injection and all went well. Off to have ultrasound this afternoon, hopefully will see more improvements. Hope you are all doing OK. Xxx

Hi Pippin,

I'm delighted to hear that you got to ring that bell at last. I've just read your other post and am delighted to hear that your ultrasound showed such favourable news too. No doubt, your hubby will soon be an expert at your injections! 

Kind regards,

Jolamine xx

Hi Carol, I'm just loving your sense of humour, you saying about getting your baps out did make me laugh. You are right though, you end up getting them out so often, you stop being embarrassed. Good to hear they confirmed that your check ups will be annual, three years is definitely too long. The breathing for radiotherapy seems a bit of a faff, just getting the technique right I suppose. I bet you can't wait to get this next stage finished. I'm quite envious,  as I've still such a long way to go. I am beginning to realise that my holiday in September will have to be cancelled, a shame as I could really do with a holiday. How often do you have to have the immune treatment and do you have to have blood tests before them all?  I was surprised when told to book a blood test before next phesgo injection, as I'm sure they previously said it wouldn't be necessary everytime. A bit annoying if that's the case, will just have to wait and see. What moisturiser did they recommend that you use while on radiotherapy? I had my mri today and have an appointment with surgeon (or one of her team, so the letter says) next week. I'm really hoping it is the surgeon herself, as she was lovely and very reassuring when I saw her last time. I really am starting to feel a bit nervous about the surgery, but will hopefully feel better once I know the plan. Good luck with everything on the 29th, hope it all goes well. Xx

Would love to hear how everyone else is doing too. Xx

Hi Pippin

I'm glad I can make you laugh.  I know how tough the journey is that you're on.  But you're doing great.  Chemo is done right?  And that is the worst stage of all. 

I have immunotherapy every 6 weeks and yes, I need to do bloods 2 days before treatment.  I then normally see or have a telephone call with my consultant or one of his team to check I'm ok and for them to authorise my treatment for the Thursday, based on blood test results.  That's annoying re the phesgo blood tests, especially as they originally said you wouldn't have to have them. 

That's such a shame re your holiday.   I had to do the same earlier this year - and we had planned a special holiday as it was my 60th.  But never mind, I'll do it for my 61st instead.  But like you, I could do with a proper holiday and see some sunshine!  

They recommend a moisturiser without paraffin products such as Aveeno.  They do list the ingredients to avoid but for the life of me I can't remember them.  As soon as they said I could use Aveeno, I just went for that.  

How did you get on with your MRI?  I had to take diazapam for my second one as I got in such a state during the first one!  I didn't realise I was claustrophobic until that first MRI.  Horrid things.  And you're in there so long!  When I went for the second one, I had no hair, lashes or eyebrows and had drawn on my eyebrows, totally forgetting that you lie face down.  When I was finished and sat up, my eyebrows were left on the frame where you place your face.  It was too funny.  They assured me it wasn't the worst thing they'd seen left on there (I didn't dare ask!!). 

Good luck with your appointment next week.  I really hope you see the surgeon herself.  I was lucky enough to see my surgeon a couple of times prior to surgery, then saw one of his team post surgery for check-up.  I'll let you know how the 29th goes. 

xx

Yes chemo is over and surgery the next hurdle. I have a telephone appointment before next phesgo injection, so will mention about the blood tests and see what they say. I was fine with the mri, listened to a bit of michael bible. Also imagined myself on holiday at our favourite place, actually felt quite relaxed. I just had to run and check my eyebrows in the mirror, after your story, they were fine lol! Will keep you posted in how appointment goes with the surgeon. Enjoy the rest of your week, I think the weather supposed to be getting warmer. Xx

Hi ladies!

Sorry for slight radio silence...we managed to get away to Isle of Wight for a couple of days which was lots of fun. We have also just booked to go to Barcelona for a long weekend on Saturday before all my radiotherapy starts. Carol1964  I start my radio on the 29th too. I've got 15 rounds so 3 weeks in total...so yes wanted to escape for a few days whilst i feel good!

I've got my radiotherapy planning appt tomorrow - so your message was super helpful Carol about the light and the breathing etc. Did you get your tattoos then too? Good to know what i've got in store. I also chatted about moisturiser etc and said that i used Aveeno and they were very happy with that. I've got the moisturisier and the body wash so am trying to lather myself up before the radio as hopefully that will help with any dry skin/blistering etc..

I"ve got my first Zoladex injection tomorrow too - not really looking forward to that,..its the implant injection which basically shuts my overaries down so medical menopause here we come! They say side effects from that won't start for 2 weeks but hoping they will be minimal! I have to have those every month for 2 years i think...and then i start anastrozole in a couple of weeks....and then other drugs in September. I'm going to be rattling around with pills before too long!!! URGHH hate the idea of taking so many pills...but i guess it's got to be done!

Pippin - so happy you've finished chemo too! Hurrah!!!!...and hope your appt goes ok ahead of your surgery. Do you have a date for the surgery? Sorry if i've missed that. Will you have radiotherapy after your surgery? Hope the Phesgo injections are going ok too...

Sending lots of love xx

Hhi Greeny80, good to hear that you now have plan in place for the next phase. Pleased to hear you had a lovely break in the Isle of Wight and good idea booking a short break to Barcelona  before starting your radiotherapy. Think we might try and get away for a couple of days before surgery. Unfortunately, will probably need to cancel our holiday to Gran Canaria in September, which is disappointing. My ct scan last week showed good improvement, which I'm happy about  I had an mri yesterday and see the surgeon on the 25th July, I hope I will then be given a date for surgery. I'm feeling nervous now about the surgery and also worried about recovery period. Still such a long road ahead, as need radiotherapy too. Still, I have to stay positive and just get on with it I suppose. Good luck with your radiotherapy and enjoy your trip to Barcelona. Xx

Hi Greeny

Good to hear from you and so glad you managed to get away for a few days.  I love the Isle of Wight, used to go there quite a lot when we were kids.  Barcelona sounds amazing too! 

Ooh radiotherapy starting on the same day - we can compare notes lol.  Glad my message was helpful - hope today's planning session goes well.  They don't do tattoos any more apparently, so no tattoo for me :)  And yep, definitely keep up the Aveeno, I'm glad they're all on the same page about Aveeno lol.  It feels odd moisturising my boobs, I remember in the mornings, but frequently forget in the evenings!  It's not something I've ever done before.  

Good luck with the Zoladex injection.  Here's hoping the side effects are minimal and manageable.  I am dreading starting the Ibandronic acid.  I'm apprehensive about side effects plus the impact on daily life for 3 years.  I have to take them on an empty stomach first thing in the morning with a minimum of 200ml of water.  Stay upright (either standing or sitting) for at least 30 minutes and wait at least 30-60 minutes before I can take any other medication or eat anything. I'm already on Levothyroxine where I have to wait an hour after taking them before I can eat, so that's 2 hours in the morning before I can have breakfast!!  That never used to be an issue for me, but since treatment I feel quite nauseous if I don't eat within about an hour of getting up. There is apparently a 6 monthly infusion as an option, so I might ask to talk a bit more about that as an option.  It would be less invasive to daily life that's for sure.  I don't think they will consider it though until I've at least tried the tablets. 

Good luck with everything today! 

xx

Hi all.  Survived another session of immunotherapy yesterday.   3 more to go!!  Woohoo! 

Hope everyone is enjoying the sunshine today.  I think I've just about washed everything that isn't moving so I can get it line dried lol. 

Have a great weekend. 

xx

PS - the dog was terrified I was going to wash her and hang her up with everything else lol. 

Hi Carol, glad to hear you have got through another session of immunotherapy. What is it you have to have and how often? I've also done loads of washing over the last 2 days. All bedding now washed, dried, ironed and put away. Feeling a bit drained at the moment and did struggle on our walk this morning. I've had a few disturbed nights sleep, so not sure if it's that, the heat or still effects of the last chemo. Expected to have more energy by now. Hope your poor doggy has got over the fear of being  washed lol!  Have a lovely weekend and enjoy this gorgeous weather. Xx

Hi Pippin

I have Pembro ...bleh blah something lol.  I have it every 6 weeks so plenty of time in between. 

Tiredness is probably a combination of all of those things.  Just take it easy, listen to your body and rest when it tells you to. 

You all have a lovely weekend too.  Hoping the weather lasts! 

xx

Hi Pippin

I have Pembro ...bleh blah something lol.  I have it every 6 weeks so plenty of time in between. 

Tiredness is probably a combination of all of those things.  Just take it easy, listen to your body and rest when it tells you to. 

You all have a lovely weekend too.  Hoping the weather lasts! 

xx

Thanks Carol, just wondered if it's something else they'll want to put me on. I just looked up to see if phesgo was a type of immunotherapy, but it says this is a targeted therapy. Really hope I won't need anything else. I'm already due to start bone infusions of zoledronic acid sometime in August, which will be 6 monthly for 3 years. Xx

I would think if you were going to have immunotherapy you'd have been having it during chemo, as that's what I was put on, so it isn't something new exactly, but just goes on longer than chemo.  It's ok though, apart from being tired afterwards on the day of treatment, I've been pretty ok on it so far. 

The zoledronic acid sounds similar to the ibandronic acid they're wanting me to start.  I found out on Wednesday that I could have that as infusions every 6 months rather than daily tablets.  I think I'll investigate that more when I see my oncologist next month. It sounds much less invasive on daily life than the tablet regime.

xx

Hi Carol, sorry I missed this message, didn't get a notification. Hopefully won't need the immunotherapy, just the hormone blockers, after surgery. I agree the 6 monthly infusions are better than having the inconvenience of having to take tablets on a dail basis. I certainly prefer this option.  Hope you are well and doing OK. Xx