hi, the pre chemo chat went very well, very helpful and informative, watched a dvd, im now having a picc line put in at burnley on Monday and start chemo Tuesday, eeek
Ooooooooooo Tabitha, all systems go then! I have my talk on Monday and am hoping to start next week but still haven’t heard about having my portacath fitted yet. Maybe they will tell me when on Monday, although I have to go to Preston to have it fitted.
Good luck with the PICC line, and my very best wishes for a smooth ride on Tuesday. I’ll be thinking about you xxx
Anyone any idea if they have Wifi connection in the chemo unit?
hi lola, i didnt ask about the wifi, something i should of asked as i will want, i may see you Monday im there in the morning,good luck to you as well, im sure they will Chase your appointment up for you, i was meant to have a hickman line at Preston but they changed it no idea why,
Hope all went well today Tabitha, and good luck for tomorrow xxx
I had my pre-chemo chat and DVD this afternoon. My chemo regime has been changed from FEC to TCH. I start with the Herceptin loading dose next Monday 25th and the chemo TC on the Tuesday, then the following cycle I’ll have all 3 together. Tabitha - it looks like I am a week behind you! I can’t have the portacath fitted until April 3rd as they are so busy, so will have to have the first cycle without a line or port, but the Sister said I have splendid veins and there won’t be a problem.
I asked about Wifi. The Sister laughed and said they aren’t that advanced in Burnley! She said I could use my Tablet on a phone connection though. If I can use that and chat to people on line it will pass the time I suppose and keep my mind off things.
Hi
Met a lovely oncologist today who was very reassuring - needed this after some very low days last week. Like you, Lola , my regime has been changed from FEC to TCH. Sort of pleased about this as the Herceptin will start much earlier (and the chemo, except for the hormone therapy, will consequently finish sooner - can only be a good thing!)
Have tohave a heart scan at Blackburn and a port fitted at Preston before I start. Dreading the port fitting a little, but, seeing that my veins are very small and I was a bit “pin-cushioned” after they took blood today, I’m sure I’ll be glad of it later. I was interested that your appointment isn’t until 3rd April, Lola - might be there at the same time or soon after!
Shame about the lack of wifi at Burnley - was planning to while away the hours with my iPad.
Take care, one and all - perhaps we should try and meet up sometime.
Wendy x
Hi Wendy,
I wonder if we had the same oncologist? When I asked about the change, the chemo unit sister told me he had discussed my regime with the Consultant Oncologist who changed it because the FEC x 6 followed by Herceptin is very hard on the heart, and although I have no history of heart problems I am 65 and therefore more at risk of developing problems. Hence the FEC was abandonned in favour of TC.
I am in a mess and it is all the oncologist’s fault, but I am left to sort it out. He arranged for my portacath fitting and also the chemo, but the chemo has come first. He never mentioned the heart scan. The portacath is to be fitted when I am on day 9 of my chemo - right in the middle of the low immunity period when we have few white blood cells and have to avoid all contact with infections. Not wise to have the port fitted in that period. In addition, I haven’t had my heart scan and will not get it until after my first chemo. The chemo unit sister said this doesn’t matter. I am not too sure but have accepted that. I am now in the middle of trying to get my port fitting changed to a more suitable day, and may have to delay my first chemo because I am not putting myself at risk of infection.
I am not a happy bunny today!!
If you have a phone connection on your Ipad you will be OK. I will be playing with mine.
A meet up would be great xxx
oh dear, i hope you feel better about things soon, i had chemo yesterday and the scan today, i was told one cycle would be ok, the chemo went well it took about an hour,
Glad to hear it all went well Tabitha. I have created a fuss I’m afraid. It wasn’t the lack of a heart scan that worried me, more the fitting of the portacath right in the middle of the low blood count week when we are told to avoid all infections and germs. Anyway, all is well. I am having an ECHO scan tomorrow, and the port fitted on 3rd April. They are delaying my chemo until after 3rd April.
Hi
Glad the chemo went ok, Tabitha - hope you have few side effects.
Lola - well done for sticking out about when you start chemo. After being told by the oncologist that I’d have a heart scan and port fitted before staring mine, I had a phone call from the chemo unit yesterday asking me to start Herceptin on 2 April, even though I don’t yet have dates for the scan or port fitting. I explained this and, after some discussion, they agreed to call me back. They conceded that the port fitting was important before starting, so have asked me to contact them when I have a date for this. They didn’t seem very concerned about the heart scan, but I’m going to be quite insistent; I’ve no history of cardiac problems but neither do I really know how well my heart functions and I would like some reassurance before taking Herceptin. I was interested that you are having an Echo scan - is it at Burnley or Blackburn? I think my oncologist said I’d have a MUGA scan which can only be carried out at Blackburn; if the Echo scan is equally appropriate and could be done at Burnley, this would be great. My breast care nurse has been away for a while but I may enlist her support when she returns next week.
Take care
Wendy x
Hi Wendy,
It sounds like they have done the same to you that they did with me, so well done for insisting on having everything the right way round. Goodness knows how those who aren’t aware of what should happen go on.
I am now all sorted, but only because I refused to be fobbed off. It is amazing how the Cardiology Department managed to find me a cancellation slot for the scan this afternoon! My chemo is now starting on 8th April (Herceptin) and 9th April (TC) which is a almost a week after my port fitting, so the tenderness should have gone by then. They have written protocols that clearly state what should be done and when, so why they don’t follow these protocols beats me. The TCH protocol is on line at
cancerlancashire.org.uk/CubeCore/.uploads/website_content/Your%20Network/resources/Chemotherapy%20Protocols/Breast/Breast_adj_carboplatindocetaxeltrastuzumabv6.pdf
Yes, the ECHO scan is at the Cardiology Unit at Burnley. It doesn’t seem to matter whether you have an ECHO or a MUGA. I think they both record the same details and the ECHO is quicker and more comfortable!
Take care,
Linda xxx
Hi Linda
Thanks for this - especially for the link to the TCH protocol which is interesting reading. The Echo scan sounds much less unpleasant than the MUGA one; if I haven’t heard anything from Blackburn by Monday, I think I’ll ask my breast care nurse to see if I can have the Echo version.
Good luck with your port fitting. I am dreading the procedure, as I’m a complete wimp (!), but am sure that it will be useful.
Hope you have a really enjoyable and relaxing week before the next round of treatment starts. We were hoping to escape to the Lakes for a week of recuperation and “normality” before I started the chemo but, because of waiting for appointments for the scan and port, have reluctantly decided this isn’t really possible. We are however still planning to treat ourselves to a couple of days away over the Easter weekend.
Take care
Wendy x
Hi Wendy,
Just back from the ECHO. It was simple and painless. It took about 10 minutes. Just an ECG to test function, and then an ultrasound scan with a monitor that was behind me so I couldn’t see it. A doctor did it, although I think technicians sometimes do them. He said my heart is absolutely normal and as it should be, and if I am refused Herceptin it won’t be due to my heart! My LVEF (left ventricle ejection fraction) is 62. That is normal. Anything below 50 and they have to reconsider Herceptin.
I am quite calm about the portacath fitting. Quite a lot of ladies on other threads have had it done and say it’s fine. We get local anaesthetic and sedation, and some ladies can’t even remember a thing about it. It takes about 20 minutes I believe. Having read all about other types of lines, and also heard what people say about bruised veins, painful arms and so on, I would have insisted on a portacath had it not been offered.
I am the same as you. We like cottage holidays, and had 4 booked for this year before my dx. We have cancelled all of them but are trying to fit in a short break between now and chemo, are am finding it impossible with all the hospital appointments on my calendar. Not to worry, there will be time after chemo has finished (if it ever gets started!!) I hope you manage a few days.
Take care
Linda xxx
good luck tomorrow with the portacath and next week with the chemo, im there on the 9th to see the onc and have 2nd chemo, its been ok the last week, 1st week i think i was waiting for things to happen, i felt on edge, if i sneezed i put it down to chemo, coughed, hicupped anything, yesterday i started to lose my hair by the handfull so i have shaved it off, i had fun though as i did have very long red hair and have had it cut shorter and coloured every week leading upto it going, i have tried allsorts of daring colours and styles, now im trying all my charity shop bought bandanas and scarves, bye for now xx tabitha xx
Hi
Tabitha - Good luck with the second chemo- love your account of playing with your new look! I bought one scarf and one sleep cap last week to help prepare me. Were the side effects from your first roubd reasonably manageable? Had Portacath fitted today and am having the grand tour of the chemo unit on Thursday so will probably start soon.
Linda - Good luck for tomorrow.
Wendy x
hi, I felt quite sickly and tired for about 5 days but im not sure if it was me on edge expecting to feel poorly, i put everything i felt down to chemo e.g if my lips were dry, if i coughed or sneezed, but everything was manageable, like being pregnant, i have felt great for the last week though, they say your syptoms are similar to each round so im not to concerned about the next one, when i had my tour i started very soon after just a few days after, good luck xx
hi linda hope all went well today, i got a phone call from the unit in preston saying i should of been there at 8.30 this morning for a fitting ??? threw me a little as i had a picc line done in burnley over 2 weeks ago, i almost said if you see linda say hi x
Hi Tabitha
Tabitha - I don’t think they know what the hell they are doing at Preston. I was there at 8-30 this morning to have mine fitted, and on arrival was told I would be going in at 9, home about 11. (They told me I was lucky because there had been a cancellation, that must have been you. LOL)
However, after exerting myself to get to Preston for that time, getting up when it was still dark even, I was made to wait until 12 before I was taken in. The reason? THEY HAD NO PORTS!!! They made loads of excuses about Bank Holdays etc. but Wendy had hers fitted only yesterday, so they must have known then that hers was the last one! They had to ring round all the other hospitals to try and locate one. They eventually found one at Hope Hospital, Salford, and sent someone down there to collect it.
Anyway, all done now and just waiting for the anaesthetic to wear off and the soreness to begin!
I will see you possibly as I have my first chemo on the 9th at 10-30. I’m so pleased you haven’t had any nasty side effects and that you have coped well. Let’s hope it all continues for you.
Linda xxx
Hi
Sorry I took the last port, Linda! Hope yours isn’t too sore - take some painkillers before the anaesthetic wears off. My port site isn’t too bad - just feels weird - but the neck incision has been painful today.
Not sure when I’ll be starting chemo but will probably be next week. Hope it’s not Tuesday as I’ve got a physio appointment and really want to go because I’ve developed cording in my affected arm - painful! Anyway, if it is Tuesday, may see you both there.
Wendy x
Wendy you have just reminded me, i should be at pendleside on the 9th, i better ring them and change it, this will be the 4th attempt to get there, hope you get the cording sorted,
Linda im there at 1pm so will miss you hope all goes well xx
That’s a shame Tabitha, it would have been great to have a chat. I will keep a chair warm for you! Hope all goes well for you. Is there a drinks machine there?
How is the cording doing, Wendy?
Linda xxx