And here is the November 2016 chemotherapy starters thread! Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave.
Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle are likely to be the same throughout, as long as you are on the same regime.
Here are some helpful links for you to prepare and support you.
If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you -
Ok so I am one of those “lucky” people to be starting Chemo in November, 3rd actually. I have to have a portacath inserted on Tuesday, 1st as I have been told I have rubbish veins. Do the hospital issue a thermometer and a chemo card? I haven’t seen the chemo nurse yet, I am booked for the guided tour on Friday.
Hopefully I am not the only November starter, don’t want to feel alone.
Hello Snowydog, I start chemo on Friday, so will join this November thread! I too am having a portacath fitted tomorrow - I’m actually not looking forward to that at all, or any of it really ?, but apparently it is best to have one fitted.
Good luck with starting your chemo next week. In a couple of weeks we will have a better understanding of what to expect!!
1st chemo for me too this Friday, although was called to go to the hospital today for more bloods. My liver count was too high so waiting for results to see what’s happening! Will be keeping up to date with this post to see how we are all getting on. I’m having fec-t 3x3. Wig apt on 8th Nov. Have started getting bits together for my chemo caddy. Gonna face this prepared (as much as I can be) and head on xx good luck everyone
Hi Snowydog, had portacath fitted yesterday. It’s a bit sore, feels like a bad bruise - but that will settle in a day or 2. They’ve left the needle in as chemo starts this afternoon. Lots of people say it’s deffo the best to have one fitted if u have the chance, so will prob be glad of it. That’s another thing ticked off the list of things to do!! X
Skye I’m trying on wigs tomorrow - like you I’ll prob burst into tears ?! But I suppose we need to try and have a bit of fun with it. I’m trying the coldcap to see if that saves any hair! Good luck xx
Hi guys.
Have just sneaked on from the October thread to send you hugs and best wishes on your journey. I had my first chemo on the 20th Oct and it wasn’t anything like as bad as I was fearing. I was beside myself with fear. I too managed to keep it together the first time I went to a wig person who just plonked the pink hair cap on my head without asking if I would be OK with that. Needless to say I was in floods as soon as I got out. I didn’t even go back but went to a different one who was very sensitive and lovely. I’m waiting for mine now. He said sometimes it’s hard not to make the wig look better than your own hair lol. I’ve had a thing about my hair (fine, blonde, straight) all my life so I am like you are very very anxious about losing it. I tried the cold cap and am just now accepting that I might lose some, most or all of my hair as they can’t guarantee no hair loss on FEC-T 3x3 that I’m on but I’m giving it a go to feel like at least I tried! I found the cold cap uncomfortable for the first 10 minutes but then you get used to it (or your head just goes numb! :D)
Love and big big hugs,
Sue
So, first chemo just finished. Don’t feel too bad, at the end of the treatment I was starting to feel like my sinuses with filling up but they feel ok now. I’m only slightly Wooly headed, a little bit of pins and needles in my feet! will see how this all goes. love and hugs to everybody who is due to start. it wasn’t as scary as I thought, the nurses were very kind and considerate and we were probably there less than 2 hours I’m having fec-t 3 x 3 no cold cap. Worst part was fitting the cannula and that wasn’t too bad either! The whole treatment part took about half an hour so make sure you have a pee first I have been for a few pee’s since, probably because of the saline drip. And it’s pink. Xxx
Well think I overdone it lol, must remember to eat before (not just before) chemo as was sick last night, also really tired too. Much better day today, not pushed myself too much jus pottering about. Roll on injection tomorrow! I’ve got some numbing cream so hopefully not too bad
Ive been trying to get this to appear in November new starters forum. Not sure if done it right as its time.
HI everyone. So good to read all of your comments. I was told may have to have port put in as my veins aren’t good…and I was really worried about it. but now I’ve noticed someone say it’s not too bad I feel bit better. I think I have triple negative. Bit annoyed as I was told I would see oncologist before by first chemo session to confirm diagnosis and stage and grade as they were doing other tests on biopsy. Even the nurse was surprised I hadn’t been given these results. I hope I’m on right treatment!! I am down to have 4×FEC and 4× DT. I don’t know exactly size but he thought about 5 cm…and also lymph node like a swollen minstrel. The lump in side of breast hurts a lot. Either a stabbing or burning pain. They said after chemo I will have surgery and radiotherapy. Yet I’ve read other people with triple negative don’t have all this.
Right back to treatment. After getting a vein they put through 2 antisickness drugs intravenously hen saline. Then the FEC started. They did the E first by hand pushing as this one can irritate the vein. She put a heat pack on my arm which helped. Or it just distracted me. This was 3 syringes full of nasty red stuff and apparently the one that makes hair fall out so she told me. Then I had 2 syringes put through pump of F and 1 of C. These hurt more I found as going in quite quick into my rubbish veins.
Post chemo…just felt tired…dry mouth and bit of nausea. Taking 4 different anti sickness drugs which are helping. Laxatives and antacid too. I’m rattling I’ve had so many. Wasn’t brave enough to give myself injection. But tomorrow I will as felt disappointed in myself. So I’m 30 hours now after 1st one finished. Been told days 3-7 can be quite bad. Will keep you all informed. But so far…so good.
Be brave ladies. We’re all fighters. Off to bed now.
for those of you, who would like to use Private Messaging - perhaps to support each other with some things, which are easier to chat about ‘off forum’ or to exchange details of a more personally identifying nature - this links should help you knowing of how to set up private messaging. This is of course, for those, who have, as yet, not discovered the feature.
Please always remember - this forum is in the public domain, so we should not share details, which could identify us or others in ‘real life’ - i.e. e-mail addresses, Facebook names, full names, doctors names, etc.
Hello Sarah, nice to hear from you. I had portacath fitted was worried about it - but after having had first round on Friday I think I can already see the benefits.
I am having 6xFEC. Everyone’s treatment is so different there isn’t a one size fits all, do whatever has been diagnosed will be right for you. Chase up seeing your onc though as they are the ones who can answer all your questions.
I’m 2 days in and feeling quite tired, not been sick but got terrible heartburn. I was brave enough to give myself the jab and it wasn’t that bad!
Keep in touch and let us know how you are getting along as we are all going through the same thing together.
Hi Kelly. Thanks for replying. I did the injection myself tonight without thinking too much about it. What was involved having portacath fitted? I have been OK today. tiredness on and off. doing too much in between. got quite breathless at times. my body telling me to slow down I think. planning on going to work tomorrow so will see how I feel in morning xx
Skye - good luck today - Your worries are understandable - it is the fear of the unknown, especially as we all react differently to the treatments we are being given - and adminstration seems to vary from chemo unit to chemo unit,too. The most important thing I can suggest at this time is to drink as much water as you can and keep the arm, where the cannula will be put in (arm oposite to operation side) as warm as you can.
This will help with plumping up your veins and the cannula insertion will be easier, as will be the adminstration of the chemo.
In general terms - if you are having FEC or EC all the way through I would really suggest to have a PICC line installed, as the E in the treatment can 'burn out ’ your veins. There are other types of ‘permanent’ ports, such as a Hickman line or a Portacath. The PICC line seems to be the most commonly used.
Again - for general reference, it may vary from case to case - generally you are being given saline solution and IV steroids followed by your specific chemo regime. The IV steroid can, in some cases cause prickling and heat in the nether regions, but it is not too unpleasant and does not last long. You are highly likley going to feel fine, when all is done, thanks t othe steroids. Some have a fuzzy head, a bit like a heavy hangover, especially when on FEC or EC. For me that lasted for about a day. The steroids tablets, you may be given to take for another few days, will help to keep you well. Steroids are basicially administered for the body not to reject the chemo. Once you stop taking them you may feel more tired, so be aware of that. You should also be given a bag of other medications, such as anti sicknes, etc and the signed form for you to apply for prescription charge exemption.
Keep drinking about 2 litres of fluid a day to flush out the chemo and to protect your kidneys and urinary tract.
If you are constipated for more than 2 days - please do not wait for it to improve - but start to take Senna tablets.
Good luck Skye. The treatment going in isn’t too bad. Just relax.
Julie… I got a nurse to do first injectioname…but last night did it myself…and I hate needles. I found best way to hold needle against skin…and push firmly…then inject the liquid all way in. I was determined to do it and didn’t hesitate too much. Good luck. It’s my day 4 too. I’m at work!!. Tired and breathless and not a lot of energy but I have an easy office job. Just hope I can stay awake!! Xx
Thank you Sue for this info. I wasn’t sure what the steroids were for. I’ve had my last ones of them today. Is breathlessness quite normal? I have the fuzzy head okay. Quite hard to stay alert xx
Hi all. I’m actually an October starter but only last Monday. Had Pertuzumab Monday, Traztuzumab Tuesday & Docetaxal & Cyclophosphamide Wednesday. All went ok with the administering of it all. Just a weird sensation. Warming my arm up before putting the cannula in really helped as I have thin veins apparently. Thursday felt fine. Friday woke up at 5 feeling sick so took anti sickness tablet which helped & put seabands on. Then just felt queasy rest of time. Saturday it hit me! Exhausted! Just managed to get dressed but no more than that. I’ve got a sore throats & my temps up & down & constantly feel warm headed. Right off any drinks except water with a slice of lemon in. Don’t even want Prosecco!!! Scalp is tingly but I’m prepared with a wig & hats for when it goes. Had diarrhoea too but then I suffer with IBS so that’s nothing new. Today I feel like I have a cold & temp hit 37.8 last night so waiting for a call from my chemo nurse as to whether I need to be checked. Anyway I’ve gone on a bit but thought it might give others an idea what to expect. Hope it goes ok for you all. BTW what’s a chemo card? No one’a mentioned one to me. I do have a book. Also why are some people objecting themselves?! x
I’m due to start chemo next week ? Having FEC-T regime, six treatments over 18 weeks.
Had my echo today and apparently I do have a heart which is a good thing as now good to go.
The only thing I’m slightly concerned over is the PICC line, as I have had lymph nodes taken from the affected side this has to go in my good arm (left) Does this affect my movement of this arm as limited mobility in the right arm still?
The treatmnt itself I think I’m ok with, I expect to feel sick and tired but bring on the fight ??.
Is the cold cap worth trying? I’m ok with loosing the hair I think. I’m off wig hunting ??on Friday and at least it’s winter coming so a good excuse to cover up with hats. A friend of mine said her sister stuck some of her own hair onto her favourite hat with surgical tape, might try this even if it only lasts a couple of weeks ?.
Feeling positive but also slightly apprehensive ? at the same time.
I have a picc line in my left arm. Nodes removed from right hand and it has been absolutely fine. I even sleep on that side as more comfortable than node side. I don’t have any restricted mobility. Only thing i was told was don’t swim, play golf or tennis! And you have to cover it when showering. I’m so glad I have it as major problems with locating veins.
Cold capping is very much a personal choice and not everyone can bear it. I have had 3 sessions so far and have cold capped. I have been extremely fortunate so far and have not lost any hair to speak of. Some odd hairs coming out if I pull (which bizarrely I frequently do)! No shedding on any clothes, pillow etc. I have one session left so I am hoping my hair hangs in there. Most ladies find the first 10 - 15 mins the worse and then you sort of get used to it. Eyebrows and lashes still intact at the moment too, although they are thinning !
Pls don’t be afraid to ask if you need to change anti sickness meds too. You really don’t need to suffer. I had mine changed on round 2 and then another change for round 3. Do be vigilant with oral hygiene as I was a bit blasé about it and came out with a Huge ulcer after round one. I didn’t make that mistake again. I now use a salt mouthwash every day post chemo as a a preventative. I was also prescribed Gelclair which is really good.
Good luck with everything. The time really does go quite fast
Sarah xx
Glad the chemo went ok. I was alright til day 3, then it hit me like a freight train! Slowly coming out the other end. Now day 7.
My mouth started to hurt yesterday & up til now I’ve just used my normal brush & paste but I might give my dentist a call to see if I can get anything from him before hitting the shops & trying to find suitable products.
Someone told me a good way to get through it is to count off the chemos up to 3 then count back down from 3. Assuming you’re having 6 obviously. Lol.