I just presumed they’d take out the Picc line straight after the last chemo I’m desperate to swim!!! Daft I know, but it’s the thing I’m most looking forward to.
I’ll ask my oncology team and see what our process is here at Yeovil. I’m always amazed at how every trust varies with processes!
I believe I’m looking at Ribociclib and Zoladex (not sure of spellings or pronunciations!!) after chemo, plus bone infusions. I think all this part starts between chemo and radio.
Does anyone know what the gap between chemo and radio actually is? In my head I think it’s a few weeks
Thanks @poppy261 thats interesting about hot flashes lasting 4- 5 minutes. I think i would be a puddle on the floor if mine lasted that long, more like a minute here id guess, but i must time them to see. Looks like Im getting off lightly! Im reallly not looking forward to ribociclib, sounds like it suppresses the immune system alot so its a constant battle against picking up infection..and sounds like alot of trips to the GP or hospital for blood tests for it. and also monthly trips for zoladex injections because there is no way I will be able to do those myself.. Not sure if you ladies will get those GP visits free, but ive been told I will have to pay the €55 appointment fee for the GP each month for the zoladex injection ! Cancer patients are not entitled to free medical card anymore here
Oh goodness @want2beme thats really awful you having to pay for cancer treatment after chemo.
As far as I understand, its all on prescription in England, but who knows, the NHS is being pushed to crumbling, so we may not be so lucky in time. That will put a huge pressure on your family. We have to spend enough of cancer, never mind paying for GP visits.
I can understand your nervousness around the next treatment plan. I wouldn’t want to do the injections myself, and yes it would be a worry if our immune system was compromised again. Fingers crossed its not as bad as they say. Xxx
Re radiotherapy gap @alannah172 , my understanding is it varies Trust to Trust. Some have had to wait 3 months before they can start Radiotherapy, whilst initially mine was just 3 weeks. But that could change because of having to change my chemo dates last time.
I think PICC removal may vary depending on the need for further blood tests for some people. But my Trust said it comes out the day of my last infusion. .
Stay strong everyone. But equally we need time to just let the tears of frustration flow somedays. Or really shout at our Walls.
in a way it’s very comforting that the majority of us are going through these flushes! we can all be flushed ladies together For better or worse!
In regards to chemo into radio I’ve also heard that it varies depending on Trusts! I’ve been told mine will be around 3-4weeks after chemo finishes. I don’t have a PICC line in so not sure if that makes any difference?
I was told they like to leave about 3 weeks between chemo and Radio…however, just to throw a spanner in the works, before they can start radio we have to have a scan. My trust said they put permanent tattoos on my skin( like a dot/freckle) so they can line the machine up each time. The time between the scan and actually having radiotherapy could be 4-5 weeks( I think the consultant said)…..I must confess, I’d forgotten the time lines as soon as I’d left the room, stupid chemo brain. It takes time to plan our treatments. I’m hoping I remembered that right.
I will also be on Ribociclib, and I am worried about the immunity side of things. I thought once chemo was done I wouldn’t have to worry , but I guess we will all be learning a new normal again, regardless of what our future drug combo will be.
Sorry about the no swimming for you ladies desperate for a dip.
I’m not particularly upset about my periods stopping either @alannah172 if I’m completely honest. I’m also glad to see the back of my armpit hair!
In other news, just had my EC infusion and only a couple of minutes into it, I broke out in itchy hives! Luckily the nurses promptly pumped me full of antihistamines and steroids which sorted me out and we were able to complete the round without further drama.
Hi everyone, hope you’re all ok. I’m 4/6 chemos in and I’ve just found what I think is a swollen node in the opposite armpit so I’m absolutely freaking out that it’s spread over there or there’s a new primary. Has anyone had or heard of anything similar to this? I can’t call the BCN until Monday now so not sure what else to do.
I had this happen to me this week so I kept an eye on it for a couple of days as I had my oncology appointment coming up anyway and planned to mention it then. By the time the appointment came around, it had gone away.
If you’re really concerned, you could give the Macmillan helpline a bell as they’re open until 8pm. I’ve called them before when spiralling and they were amazing.
I would contact your 24/7 oncology helpline asap @rh88 , as they will need to put it on your file about the swelling.
They will also be able to advise you, in more personal detail, about what to do, and hopefully put your mind at rest.
Glands can swell for all sorts of reasons, so I wouldnt worry too much just yet.
But the specialist 24/7 Team are there to help you with any symptoms during chemo, even of minor ones e.g sore mouths; colds;sore feet; hot flushes….anything chemo/cancer related.
They want to know of any changes, as this means they can get you the right medication to make things easier, or they can advise on further action via you own Team if required.
They are wonderful and reassuring. So dont worry about a minor niggle….they want to know them all.
I didn’t notice a swollen node, but a suspicious lymph node was picked up on a scan on the opposite side to my breast cancer. I had a biopsy taken and after testing it turned out to be Granulomatous lymphadenitis and required no treatment.
Huge welcome to May Starters @flowergirl3 . Lovely to have you on board and share your experiences with us all. Hope your treatment is going OK.
Good to know the scan results you had was equally not serious. But its important to get swellings checked out, even if its just for peace of mind. We surely have enough to worry about dont we.
Well, the EC is about as horrible as I remember. Infusion day was Friday and the Friday evening, Saturday and Sunday morning were fine, probably due to the steroids. But the fatigue kicked in big time on Sunday afternoon so I went to bed and stayed there for 16 hours! To say I felt rough coming round this morning is an understatement. No nausea thankfully (I’m taking the meds) but feel a bit like I’ve been run over. I know I’m probably slowly coming out of the other side now but just wanted to have a little offload somewhere where I don’t have to pretend I’m fine. Thanks for listening!
You all okay, girls?? Well, by ‘ Okay’ of course, I mean are you COPING?
Readying myself for bloods at noon, and phonecall with ANP this afternoon, hoop-jumping. I’ ve no idea whether they pass on my comments to anybody at all. Just box-ticking, I think, unless I flag up something worryingly odd. Cynical? Moi? Give over.
Welcome to @flowergirl3 ….stick with us…and all the very best of luck to you!
See the post above yours, which I somehow managed to delete this morning! My brain appears to be partially on strike and I think COPING is about the best it might get for me today.
How about you? Are you nearing the finish line soon? x
Glad you are feeling a smidge better today. So glad I’m not on EC any more, mind you paclitaxel is not my friend either! You can do it! A slow improvement is still an improvement and that’s a positive and most definitely worth celebrating. I used to have one extremely bad day on EC too, so it’s not just you. We are all here for the good and the bad. No pretending everything is ok here, just say it as you feel, better out than in!!.
I hope tomorrow is a better day.
@bea4 I hope all goes ok for you and you get the news you need.
Braving the school shoe shopping and trouser shopping today….hubby is actually home and can drive us to somewhere that might have something to fit. Mind you, given the choice between shoe shopping for son or another dose of chemo….I’d pick chemo!
Hope all you other wonderful ladies are not too stressed, not too hot and are feeling ok ( as much as you can be on your cycle).
Thanks @baldiesrus! As much as I hate anyone else having to go through this, just someone saying, “yep, I get it, it was like that for me too” makes me feel half the battle is won.
Sorry to hear the Pac isn’t being kind to you. My Pac was weekly and I felt like it was kind of just there most of the time for me, then just as a good day kicked in, it was back to it. So I was almost always under the influence of it all the time. Is it similar for you? x
My Paclitaxel is 2 weekly, but I am on a reduced dose of 80% due to my body not liking the first dose. My hands and feet reacted the most, it has calmed down now, but it kicks off the day after chemo….they go red, thankfully I don’t have the pain in them now, except the finger and toenail region. They also get itchy. I start losing energy on day 3 and day 6 is the worst for exhaustion….except this cycle day 5 was( Friday- heat wave made this the worst day). Slowly bouncing up now. With the 2 weekly pac I get the 5 nights of injections starting on day 3. The injections come with their own side effects. Sometimes hard to tell which is chemo and which is the injections! It’s a slow bounce up. This week is my rest week and I appreciate each day that is a bit better. I don’t feel as though I fully recover before getting hit again.
Ec was a bit like the pac….started going downhill on day 3-4 and day 6 I kind of hibernated lol. faster bounce up on that and had more energy, except for cycle 4…the accumulative affect got me hard. I also had a few temperature spikes on the EC…a few trips to hospital. I am hoping my last cycle of pac ( and chemo) on the 24th behaves too.
I’m desperate to swim!!! Daft I know, but it’s the thing I’m most looking forward to.
! Cancer patients are not entitled to free medical card anymore here 
But equally we need time to just let the tears of frustration flow somedays.
Or really shout at our Walls. 
For better or worse!
fingers crossed 
