** APRIL & MAY 2021 BREAST CANCER RADIOTHERAPY **

Hi Kathryn

I had my radiotherapy planning today. Just want to reassure you that the holding the breath is ok. Please don't over think it. It's just to ensure that you are lifting your breasts away from organs, they give you lots of practice and it's all very relaxed. I had to hold it for 30 secs for rads planning and then for again for my CT scan. I will be holding out for 30 seconds at each of myVsessions and after today's planning feel comfortable to do so

All the best to you X

JD

Thanks JD and Daisy53 that’s not that bad then had visions of it been for about 2 mins or something stupid x 

Hope all goes well with your treatment. X 

Glad you feel at ease now..you will be fine. Thanks for the good wishes. My treatment starts Thursday next week. 

All the best to you for treatment too as

JD

Hi  did you decide on the 5day course? I also had my planning meeting yesterday and start Monday 24th so not far behind you  
I felt the same re the breath hold. When I was told to hold by breath for 20secs my response was ‘oh that’s not so bad, I thought it was going to be minutes’. As others have said, you’ll be fine. Also my sentinel node biopsy left me with some cording (apparently rare for a biopsy) so I thought I might struggle getting my arm in to position but that was also fine. 
Having the planning meeting definitely put me at ease ahead of the sessions. 
Hope you get on ok. I’m sure you will xx

Hi Daydreamer6 

Hope you are well, having spoken to my consultant I have decided on 3 weeks. Hope many weeks are you having? 

I also have cording in my arm..it has been really painful but has started to ease which is a good sign.

All the best for your treatment x

Hi Jejke  I hope you got on okay with your heart drugs, sorry you had to experience that.  Hopefully you were okay after the radiotherapy and no side effects from that.  Did you restart P and T last week?  I had my first Herceptin (via jab in thigh) and pertuzumab (iv) yesterday without the Chemo element and so far feeling absolutely fine.  Will see how the next week pans out but got high hopes will escape side effects and can start rebuilding my poor wee battered body.  Wasnt sure if the spotty rash on my face was due to the pertuzumab so will see.  Ive stopped all my drugs and will only take as necessary now. 

 Radiotherapy starting on monday.  Think I only had to hold my breath about 15/20 seconds on the practice runs.  I kept letting my breath out marginally but once I realised what that felt like I could hold it in okay.

I was just gonna keep using Aveeno cream as it managed to stop the itching during Chemo so hopefully it will work fine for me over the next 2 weeks.

Caroline

Hi Daydreamer6, good to hear from you, looks like I will be having my radiotherapy at the same time as you. I have my planning session on Monday and then the radiotherapy starts on 24th for 5 days. This is the last of the treatments for me, I had triple negative BC so won't be having any hormone treatments.

I hope your phased return to work goes well, I've been working part time all through my treatment but as I am self employed it has been difficult to not work. I've learned from this that I can work less days and still get everything done and will now be moving to a 3-day week.

, I've had some cording too and I only had four lymph nodes removed. I've been doing the exercises every day and it is now starting to ease thankfully

Best wishes x

Hi Hollythecat 

Good to hear the cording it's easing for you !

I had 2 nodes taken out so was surprised that I had such painful cording, but pleased it's now easing. I find it's worse in the mornings now rather than all day long which is progress x

So the best x

Hello Caroline,

Thanks for asking after me.  I am now 3 weeks post radiotherapy, and all seems to be fine. I think I can tick that one off.  

Heart drugs weren’t great to start with but the system seems to be readjusting. 

Quite traumatic appointment at the day unit this week. I went expecting Herceptin and Pertuzumab iv.  But oncologist had prescribed a maintenance dose, not a loading dose which I needed as I hadn’t had any since December.  After a lot of to and fro and not being able to track down my oncologist, a doctor I had never heard of sent a message via a nurse that I should have injection instead as it was already made up and would be quick to get from the pharmacy unlike the iv which would be a wait of a few hours.  The nurse took me off to a side room, sat me down and pretty much gave me a sales spiel about the injection.  I felt a bit overwhelmed, too much new information, not sure what to do, but pressured into having injection.  I’m the kind of person who likes to read up on a treatment, research it, discuss it, think about it, and then decide, but I couldn’t.  I was already a bit anxious that morning as I was due to have my first Zometa infusion.  While I was having that, I managed to get enough internet connection to read a bit on the new injection.  It’s called Phesgo, is a combination of Herceptin and Pertuzumab and was only licensed in UK in April, so very new. The nurses don’t know much about it. The one who gave it admitted she had only done 3 before. The injection is over 8 minutes theoretically but she didn’t have a watch so after she had inserted the needle she got her phone out and was messing about using that as a timer! Meanwhile the needle was moving about in my thigh!!  Quite unpleasant!  When I got home I found I was very emotional and upset about the whole thing.  I feel I was rushed into a decision I now think was wrong for me.  I’m still very churned up about it, but not really sure who to talk to.  I want to ask if I can go back to iv versions of the drugs in three weeks time but not sure if they will let me.  My mind is in a bit of a scramble about it all.

Side effects so far are some flushing/redness on one side of face and dodgy tummy but nothing too bad and nothing like as bad as when I had them with chemo.   Also had sore throat and feeling as though I have a chill, but think that’s the Zometa.

Planning to have a chilled weekend and calm myself down about it.

sorry that’s been a bit of a ramble!

Hope everyone else doing well in their treatment.

Judith

Hi Judith

Oh my that really was a horrible experience by the sounds of it.  I think a small number of the nurses sometimes forget how even being at our chemo appointments is hard enough without big mistakes like that happening.  You are quite right it should have been a loading dose you got but given the circumstances it sounds like there was no choice in the matter.  The nurses at my unit havent even heard of Phesgo as ive asked different ones over the past couple of appointments.  Im pretty sure this will be the standard way ahead in the future for all sorts of reasons including costs, time at unit reduced risk of infection etc.  

I got an iv pertuzumab 2 days ago but also the subcontaneous trastuzumab as the oncologist said that this was because they had a surplus of injections!! Cant argue against honesty:)  My nurse also initially read the wrong kardex and was talking about administering a loading dose which i got the appointment before and only I questioned the dose and said that was wrong!!!   

I think if you asked for an appointment with the oncologist to discuss the matter and maybe talk about getting the loading dose iv on your next appointment and what to get after this.  It is all ordered by the oncologist as you know so thats defo the way ahead and the breast nurse should help get an appointment for this.

The Zometa will probably have alot of symptoms of its own so I dont suspose you'll get a true picture of what the P & T are like on their own.  Hope you feel better over the weekend.  It takes awhile to get over an upsetting incident.  

Take care now x

caroline