well hello all back on line … had last fec on thursday but had 4 units of friday been wipprd out till now really scared for haveing t on the 24 of feb . mean really scared as had a rough ride… oddly my kindel wonr let me go back n look at other threads to see what you al been up too. so hope u are all ok well lots of love
Hi Fredflowerpot!
Not doing too bad myself at the moment. Alsl dreading the t and the steroids that go with it.
Had an appointment with my onc today to discuss the steroids in particular as was worried by 4 times the dose of the ones after fec.
He listened to what I had to say and all my concerns. He recommended to have a slightly higher dose via IV on the day of chemo and to have a lower dose on the 2 days following, so that overall there will be less steroids in my system over the 3 days. He thinks that may help with the side effects from them and still cover me so I don’t have a full on allergic reaction to the t.
I asked about long term effects on my heart etc and he said that doesn’t usually happen with the quick short bursts of steroids like we have with the chemo but with long term use of steroids.
I feel a bit better about it now. He says that by having the higher dose on the unit at least they can keep an eye on me too.
Still worried but not so much. More anxious of the unknown I guess.
Hugs ladies. Vicky xx
Hi Tina,
Glad you’re feeling a bit better…well done on getting out for a stroll, that’s more than I have done for ages!
It’s weird with the arm pain and bruising, it sort of creeps up on you slowly but it is quite painful, our veins do not approve of all these chemicals being pushed into them!
I saw my oncologist for the first time on the 7th Dec. Started chemo on Christmas Eve, I then say her again on the 3rd Feb and have appointments again on the 16th March and 3rd May. I only see the chemo nurses for the bloods/assessment and the actual chemo.
All I know about steroids with the T is you get some to take the day before. With FEC I was having 3 x 2mg dexamethasone. I won’t know for a while, what I will be given in prep for T.
I went for FEC 3 today, 6 days late because of an apparent cellulitis. My appointment was at 4pm and after arm warming, it was about 4.15 before they attempted to get the cannula in. Two attempts failed and then it was too late, you have to have started by 4.30 to have the doctors to cover if you have a reaction. So it’s back in for 9.20 tomorrow, to have a PICC line fitted. Then chemo at 2pm, unless they get a cancellation and can do me before that! It’s very frustrating but just one of those things really!
Amanda x
Oh yes, I can’t wait to get it all done… on the way back from the hospital, within ten minutes two songs came on the car radio that I seen in Planet Hollywood when we were having a fun trip into London, I ended up crying because those carefree family days together seem long ago and so far away from happening again! We just have to keep on at it though, I don’t think anyone would scold us for saying “roll on summer!” Are you going to have radiotherapy after chemo? Then tamoxifen or something like that?
I have to give myself G-CSF injections, starting from day five, for five days. (One injection a day for five days) It will ve seven of them when I have the T. They are not too bad to do…but just more of the general unpleasantness that comes packaged with our diagnosis! ?
Yes, I hope I can join you at the half way stage tomorrow!
Hope everyone one else is doing ok.
Amanda x
Hi ladies
Tina I would ask for an appointment with the onc. I think you are supposed to hve one after a few sessions to discuss how it is all going so they can work out if they need to change anything. My friend Dee had one after the 2nd fec and I had one lined up for after the first t although saw him Tuesday after calling worried about steroids. He says to still keep the other appointment to see how the 1st t goes.
I was on 4x2mg tablets once a day after fec. They box they bought out after the first one I swear said 4x4mg twice a day. After talking to onc Tuesday I am wondering if something was miss typed and it was 2mg tablets although he still thinks steroids via iv on the day would suit me better.
Amanda I have a picc line in. Had one from 2 days before 1st chemo. They are a god send in this madness of treatment. No having to find a vein for cannulas or endless needles. Just a flush each week which isn’t too bad. And bloods done from it too.
Definitely recommend it.
We are all on different treatment paths.
So far info for mine is er- her2- grade 3 ductal carcinoma. Mine was caught early due to a cyst…the cancer was on the side of it and by the time I had surgery in 3rd Oct it had invaded the cyst fluid and was so considered 7cm. I had a masectomy with reconstruction on left breast and my lymph nodes came back all clear. After the chemo I don’t know if I will have to have radio or not. I do know there won’t be any tablets as my cancer does not respond to hormone treatment.
I had a genetic test done as lost my mum to breast cancer when she had just turned 49. Her cancer was basically the same as mine but had already spread and was too late to cure her.
I just found out this afternoon, after work, that it is inherited. I have a faulty braca1 gene. Looks like further surgery to remove the other breast at some point on the cards if I want to make sure I avoid going through chemo again. Couldn’t cope with this again in a years to come. Hoping I can have another baby first and my one remaining breast can do what it is designed for one last time. Then I will request the same surgeon and make sure of a matching pair!
Whats your stories?
Vicky xx
Hi everyone, hope you are all coping ok.
I had had the picc line fitted this morning…ouch, was a bit of a struggle and took about half an hour but it was much easier when having chemo this afternoon. Maintaining it (weekly flushes and dressing changes) is going to be a pain if my local surgery can’t do it as the hospital is a forty minute drive away.
Tina, I asked today and T is derived by drip and takes an hour, of course you have to factor in the arm warming and cannula insertion, plus you cold cap, the T is probably the quickest bit!
Gillian, you have been have a bit of a rough time with that, hope you will be feeling much better soon, keep that finish line in your sights!
Love to everyone,
Amanda x
Still here. Just wanted to wish Vicky a good time for Saturday. High fives to all. We are great. I’m struggling with se. Day8 now. Chat day 10 xx keep smiling
I don’t watch soaps, too depressing. Thay must have some sort of ‘intteruption in the space-time continuum’ at Emmerdale or something!!
Are you drinking enough Nadz, and getting enough rest? Hopefully you be perking up soon!
I had my visit to the breast clinic on the 4th Aug and was diagnosed on the 11th Aug. If there are no more interruptions in my chemo (not holding my breath on that one!) I will finish on 13th April, so maybe a month before starting rads for three weeks, so with a bit of luck, I too should finish about June, 11 months!
Claire, the thing I hear about T the most is not so sickly but mores bone aches, I think it as also tougher on the hands, feet and nails, brows and lashes but some peoples hair starts growing back, so there maybe some hope! What thread did Delly post in? She hasn’t been back to ‘Just Diagnosed…’ thread for ages!
Tina, I was also given four 2mg dexamethasone to take twice day, starting the day before T, so we should be ok!
Amanda x
Hi ladies.
Nadz thanks my little man’s party was really good! Had a few cancel coming on the day due to being ill but that’s ok. None of the kids wanted to leave when their parents came to pick them up they all had so much fun!
Gillian hope your throat is getting better now. Don’t worry about the genetics finding. I was expecting it and in one way am actually pleased as they know where to check in the DNA code for my sister. Keeping my fingers crossed that she inherited the good gene. So is my eldest. He understands it all and hopes she has the good gene too bless him. He understands what it means for him to a degree too. My sister has a little girl who’s 5 so really hope she has the good gene. Tina and I both have our first T on 19th I think assuming she is still on the Friday with me.
Tina I will still cold cap on T just to be on the safe side asblike you have lost 50/60% of my hair but still hanging on. I have found plaiting it day and night helps keep it knot free and easier to comb with a wooden wide tooth comb and so not as much comes out.
Amanda flad the picc went in ok. You won’t have to worry abkut arm warming and cannulas now. It really does make i so much quicker. I too had to go for weekly flushes at the hospital which is 40 minutes away too. It wasn’t too bad but now on to the community nursing team which is easier.
My last T should be on 1st April if everything goes to plan and no hold ups. Still don’t know about rads. Thinking possibly not as had a full masectomy and reconstruction.
It has been a lovely sunny day here today, although a little chilly. Took the boys out riding their bikes today to the promenade down the beach. Cycled about 2.8 miles in all. Did have a stop at a friends half way through for a cup of tea mind. Felt nice to get the exercise.
Hope everyone else is ok.
Vicky xx
Yup we need to hang on to that thought Tina!
Bit scared of T too and being half term my boys are off. They are going to a friends to play while at the hospital.
I am still getting hot flushes too. So bad last night I was soaking wet with sweat. It was totally disgusting!
Heart flutters stopped but took only half the dose on the last fec. Going to have higher dose via iv on day of T. I am in at 10am Tina. Will try to post as I go through or just after so you can have a read before yours at 1pm.
Off to Manchester for some fun with the kids today. Quality family time is just what we need right now.
Vicky xx
just wanted to say hi all.xx love n hugs
Hi Fred…sorry…chemo brain, what is your name?
FEC 3 day 6…I’ve been rather weak and shaky for the last couple of days…sleep is a bit of a problem too but it is to be expected and isn’t too bad really!
Hope everyone is doing ok.
Amanda x
Hi all
Popping in from the Nov thread to say hello and give hugs
To those with nasty taste I found using Dr Organics tea tree mouthwash helped
Jen
xx
Ladies have you heard this news! There has been a pretty big breakthrough that sounds quite promising.
news.sky.com/story/1642626/extraordinary-cancer-breakthrough-revealed
Got a very interesting video with a professor who thinks it will be widely available in 24-36 months. If they crack it for solid tumours such as lung, breast and bowel, and it is available in a few years then I personally might not need more surgery but be able to get the infusion. Think its a case of keeping fingers crossed. Surgery wouldn’t be for at least 3 years for me anyway as if I have managed to protect my fertility we want to try for a baby first anyway and I would like to try and breastfeed with my remaining breast. So iate 40’s or 50’s because of braca1 gene I would need ovaries removed. This if they sort it for solid cancers could mean I avoid that too.
Trying to not get hopes up but it does look promising and I really hope they manage it. It would mean a whole different outlook for so many of us.
Hugs from Manchester!
(We have visited old Trafford and legoland discovery centre to treat the kids today)
Vicky xx
Ops supposed to say so in late 40’s or 50’s I would need ovaries removed. Not sure what happened there!
Xx
Hi there,
Does anyone know how long it takes for vein/arm pain to go away?
My veins are tiny and the nurses take 4 or 5 attempts to get a cannula in and then they call a doctor. The nurses even failed to get a PICC line in and gave up after an hour of trying.
it’s my final AC on Friday and I’m going to try to insist on a doctor to put the cannula in - they seem to manage it the first time they try. I just want to avoid any more damage. Apart from the pain, several veins have gone hard and I don’t know if these will recover either.
Thanks for any advice, and good luck to you all.
Tv girl I am sorry I have no idea. Sounds like a good idea to insist on the doctor doing it though. I would ask the doctor what has happened to those hard veins and if they would get better.
Good luck xx
How is everyone today?
I have bloods later, with 1st t (cycle 4) tomorrow at 10am.
Dreading it but trying to find the positives.
- Onc is hopeful for the rest of my hair as T kinder to hair.
- He has changed steroids so I am not taking any today but will have it in iv at unit so any problems they are right there.
- And I will be 2/3 of the way through, 6 weeks away from the end of chemo hell. Then I can get on with wedding planning.
Hugs Vicky xxx
Good luck for tomorrow Vicky and Tina…you too, isn’t it?
I will be awaiting your reports of the ‘T’ with interrest, it’s like having chemo for the first time again! Well, not quite, we have learned a lot so far and it’s will be so good to get another bugger ticked off!
Amanda x
Thanks for looking in Jen, it’s so good to get info from the pro’s! Have you got much longer to go now?
So far (fingers crossed) my mouth has been ok, got an aversion to scents of all kinds though!
Amanda x