I had a different kind of scan prior to starting my TCH (my C is Cyclophosphamide), I got a radioactive dye injected via cannula then a mugga scan which involved me lying on a bed whilst a scanner went over my chest/heart area. It took about an hour in all. Think this is mainly due to the fact that I'm having herceptin injections. It measures your heart ejection rate. Seems to vary in different part of the country. I'm in Scotland.
It was certainly painless and nothing to worry about.
Good to see so many people actively posting.
Ive had a small drama with my internet access but all seems to be good now. So thought I would post just a quickie to say hi and hope all is well with all Late August/September starters.
i had by first TC session on Wednesday (no Herception). Feeling the mouth issue today and, of course, missing my steroid fuel injection from the other day but apart from that not too bad. Yet!
Hope you all have a comfortable and enjoyable weekend.
Mine was an Ultrasound of the heart. You have to lie on your left side and they take lots of pictures and do measurements and then have to analyse it and send the results to your chemo nurse. Doesn't hurt unless you have difficulty maintaining the position you need to be in. Sometimes they need to do something a bit more complicated if they can't get enough information.
Thanks for that Blueash. I'm going to add that to my list of questions for Monday! When I've been trawling through the posts, I've seen comments about the PICC line and how useful it can be.
Kath if they don't mention it ask them about a PICC line. I have one and it is wonderful! Mine was offered without my having to ask because they can only use one hand and I thought they said it to everyone but not so. Some people have a lot of trouble with their veins.
You don't feel a thing apart from the injection to administer the local just above the inside of your elbow. It takes 20 minutes and it means no needles or cannulas for your entire treatment. Sue had trouble with her veins and the ended up giving her one after 4 rounds and she wishes they had given it at the outset. She has said so herself on here but it must have been in another thread.
You will have to get it flushed once a week/ten days but so worth it.
I have had one and am going again tomorrow. You might also get injections to give yourself - I was so worried about those! I had to read the instruction 20 times and was still worried but honestly after you have done one or two you are fine.
You get a heart scan before you start and then every 12 weeks - that is painless just an ultrasound and I had to be on my left side, then my back and then my right side. They also want you to tilt your heat back and pass the thing over your throat/neck. It takes about 20 minutes.
Hi Kath, I am having TCH x 6 (docetaxel, carboplatin and Herceptin) then I carry on with the Herceptin for another 12 lots. After that I move on to rads, 3 weeks of regular and one of boosts.
You get far less nausea on our treatment BUT a more tiredness/fatigue. It is also said to be unkind to your nails.
I have only felt bad on days 3 and 4 then I seem to pick up but I am taking claritin and I am sure that helps:
Hi Kath64 and Joan 58,
Thank you so much for your comments. I am glad it is over to be honest. However, it also means that there will be a new rythm to my routine, once the 'cycle' of 21 days has past. No more chemo and 10 days bound to the sofa and recovering only to have another one. It will be interesting for soon in the 3 weeks, once the radiotherapy starts - lets see what SEs will appear. Mind you, I have been assured that they will not be as drastic as chemo can be.
As you all move through chemo, you ought to be prepared that some side effects are cumilative, and this especially applies to fatigue. It appears that this happens on FEC and FEC-T treatments.
Those of you on FEC-T may have to face a new set of side effects, whilst those on FEC only may see the side effects they have now, and can not be managed by your accompanying meds, become cumulative.
Also - those who have G-CSF injections - you may experience some bone pain, although I did not, but then every one is different. One thing to look out for though - some, like me, can have an allergic reaction to them. It may have been the specific way it was manufactured by the company supplying the injections. However - please, please read the accompanying leaflet of your specific injections and monitor yourself as to anything it says re allergic reactions.
I was fine on cycle 1,2 and three, but had an allergic reaction to it post cycle 4 and did not recognise it as such, thinking it was the chemo. After cycle 5 it was so much worse and I finally read the accompanying leaflet. Just as well I did - allergic reactions are cumulative. And when discussing with my onco I was taken off G CSF for the last cycle, as a further reaction would have been too dangerous.
Do not let this scare you - it is very, very rare. I have only posted it to raise awareness.
Tracym1 - so glad you are doing fine. Temperature drops can happen, as our body is not 'making' as many new cells, as it usually does. it is something I experienced, too. My usual average is 36.5 and I went as low as 35.7 - it was ok, as I generally felt well and rarely had the shivers. My temperature also rose at some times - up to 37.3 - again, when the cells start 'growing' again post day ten this may happen.
The main thing to keep in mind - if you feel unwell, even if your temperature is normal - call the chemo helpline and check with them. It will be no trouble for them. It is ALWAYS better to be safe than sorry.
Anytime your temperature rises above 37.5 - you must call them, it is really important to ensure that you are not harbouring some kind of infection. As, if you should, you must be treatet immediately with IV anibiotics.
Another tip - should you have to attend A & E for any reason - take your chemo - card with you and inform the receptionis that you have a compromised immune system. This should ensure you are waiting in an area away from all the others, so you do not pick anything up. There should be a protocol in place of how to deal with chemo patients.
Hoping you are all doing ok - if not, if you feel up to it, please post and let us know - it is totally ok not to be doing so well .
Well done on getting to the last session, you must be so pleased. You're giving me hope about all this at the moment, so keep posting!
hope I all is going well for your LAST chemo session today - wow how good must that feel. Glad to read that you will still be visiting this forum and giving advice/helping others as I have found your suggestions and links to important information invaluable. Good luck with the rest of your journey and for a healthy and long lived future xx
Had my first Chemo Monday which was 8/29 but I posted in this thread anyway.
It was very scary at first because I was afraid of exploding and melting and what ever other crazy stuff I read about.
The first chemo treatment they do very slowly and watch for any side effects. I arrived at 10:30 am and didn’t leave till after 5:30 pm. I was going nutty from sitting but generally had no effects. The only taste I had was from the saline solution. Which they use to pump me full of fluids and the bag of saline would take over in between chemo bags. It tasted like saline nose solution in my mouth. I mixed it with a snack bag of Doritos or another snack they had piled there.
Perjeta (specifically attacks cancer cells)
Herceptin (specifically attacks cancer cells)
Taxotere ( attacks all fast growing cells and is the one that will call hair to fall out etc…and have to be really careful with).
The only one I had any effect when it was going in was Taxotere which caused my temperature to go up and I got a flush. They slowed down the dose (which… since this was around 4pm… slowing down the dose was painful because I was so…ready to leave.). They gave me some Benadryl and Tylenol. My temperature went down and I was fine.
Good news, at least in my head, I did feel heat coming off my booby with the cancer nuggets and I do believe they have shrunk! But this is maybe my own mental state of wishing and not a true diagnosis.
Effects Tues: Gassy and burping. My normally sweet smarting farts were toxic. I am also a little constipated but not nauseous. Also my taste buds are dulled. I can taste salt and sugar but the in between is bland. Like a ham sandwich is just there, I don’t taste the ham or the bread flavors, but a **bleep** still tastes mildly like **bleep**.
Effects Wed: Money constipated, took a slow easy laxitive, finally relief. Has slight dierra by late evening took a sip of kaopectec (I'm a believer if you stop it completely it will just come out the other end, so I only take enough to stop the cramps). No nausia.
Had a strange drop in my temperture too, from norm of 98.6 during the day to 97.4 which gave me a little shaky so I ate seomthing warme and added clothing. I warmed up but by night time, I felt it drop again and this time to 97.1. I snuggled deep in covers and warmed up but slept through the night pretty well.
This morning: Temp is back up to 98.1 feel normal except for taste buds, eating warm foods. Trying to keep in my mind to watch out for hot foods since my senses are dulled.
Some suggestions I took before hand which might be the reason I’m not feeling bad, at least this first time. Is I drank at least two litters of fluids Sunday and drank two litters of fluids during and tried to drink as much as I could yesterday.
I’m doing fine.
I’ll go back for another treatment in 3 weeks Sept 19th. The treatments are set up for 13 cycles, which they may or may not keep according to how things go. They will increase the flow, at least of the first two bags to 30 minute doses, instead of a hour. The Taxotere they still may take a little slow until they can gauge my reaction.
I can only assume that the future ones will be stronger and more intense but this first one at least eased some of my fears and I did explode or melt. I will deal with what comes next. At least that is my attitude at this point.
thank you for your kind response.
Just so glad I could be of help - and yes, it is my last one. YAY!!!
However, I am aware that some of you have started, other ones are due to - this month.
I shall be here and support, as well as I can - from the experiences I have gained myself and the many things I have learnt so far.
Chemo is not nice and it does take months out of our lives, but it is not to be feared. For some the journey will be easier than for others. And there shall be an end to it!
Whatever your feelings and concerns - keep posting - all on this forum, as they gather they experiences, and I shall be here to read, hug and support you all the way.
Hi to everyone
first session done and dusted but apart from a tiny sicky feeling in the night all going well so far. I hope that both Anne and Samori are feeling equally good this morning? I've got lots of anti-sickness tablets to take too and also the steroids which I've been advised to have at 7.30am and 12.30pm in order to avoid the 'buzz' in the evening. She also said to take one twice again instead of one and leave 2 tablets for day four as this will help with the 'come down' feeling that some people experience when the steroids stop.
My hair looks lovely today NOT! I had it plastered in conditioner yesterday prior to having the cool cap and they would prefer me to leave it without washing for 72 hours - hence the Rod Stewart look! The cool cap treatment was strange and uncomfortable near my forehead but that was because the cap was tight rather than anything else and it certainly was not painful at all. Like other have said once you get past the first 10 minutes of coldness you sort of forget about it.
Kath64 thanks for you good wishes. I too will be having Docetaxel followed by radiotherapy and hormone treatment but do not require Herceptin.
i am going back to the hospital tomorrow for an injection to boost my white cells to help protect against infections. The nurse will do this for me but I can then do it myself at home after the next sessions. (Think I might get one of my daughters on this). I am seeing a cardiologist on Saturday as I have been suffering with high blood pressure for the last two years and this is as a precaution nothing else. Afterwards I will be collecting my wig - exciting!
well good luck September ladies (and also the late August ladies who are on this thread) and happy days for us all xx
Joan and Samori - I hope the treatment went well yesterday.
Anne - hope you're feeling ok with steroids.
I saw the consultant and will be having 6 doses of Docetaxel with Herceptin injections at the same time, followed by radiotherapy and hormone tablets. Anyone else having that? I now need a heart scan next week and a pre-assessment appointment with the nurses which they hope to arrange for either the end of next week or the start of the week after. The treatment should then be in about a week. I just want it to start now.
Thanks again for for all the really timely and useful information.
My steroids recommended taking the last dose at 6pm and the first night I barely slept at all and felt as if my head was operating at maximum warp speed!
Anyway took your advice and brought the dose forward to early afternoon yesterday after my treatment and had a much better night. Thanks.
I think I read somewhere on the forum that you have your last chemo session today ( or maybe soon)? If so, hope it goes well. And congrats at getting to this stage of your journey. It's been really helpful learning from your experiences.
as to steroids and side effects. The kind of steroids you are likely to be given might vary depending on your treatment and your age and health status. Often the regime is that you get given a strong anti sickness drugs 30-60 minutes before your chemo. Then, again in many cases. and IV steroid is administered. You are likely given steroids to take home with you to take orally for up to 4 days. What dose will, again, be individual.
Steroids are given, as previously said, to avoid our body reacting adversly to the chemo treatment. They may increase your appetite and yes, sleep can be challenging. Your normal sleeping pattern is likely to be disrupted. Some might also go into 'hyperdrive'. lol - I certainly do!
It is worth remembering to take your last steroids for the day be 14.00 hrs, this may help trying to get to sleep at night.
You should also be given some anti sickness drugs to tak home with you. Take them religiously - they are there to help you. If they do not work well, please let your treatment team and/or your GP know, so they can be adjusted or changed - so you feel better and can manage not to be sick.
You may, depending on your treatment, experience constipation. If you have not been for 3 days - you really ought to take action, as otherwise it will lead to stomach cramps and other challenges.
Another thing - is to drink at least 2 l of water per day. This will flush the chemo treatment out of your body and also support your kidneys and liver.
Once you stop taking the steroids, you may feel more tired than usual. That is completely normal, rest and nap when you can.
Hope this is of help and that those, who have started are doing ok.
We are given steroids as I understand it, to help manage the side effects of the chemo. I had them at the chemo and then for three days afterwards. Mine will change from oral to IV with the chemo when my chemo drugs change on cycle 4. The only side effect I've found is that you don't sleep very well while you're taking them but this changes once you've stopped.
Hope this helps. If anyone knows any better .....
My Onc prescribed them yesterday. When I asked why he said it was to reduce the risk of an allergic reaction to the chemo and that they help with any appetite issues and help to reduce any possible nausea. I'm not sure if they are standard or only for particular chemo cocktails. Day two on them, I haven't even had chemo but I don't half have the munchies! Lol. Pretty much working my way through the kitchen as we speak but that might be nerves too.
If your Onc hasn't mentioned them then perhaps you won't need them.
I'm going on to TC and thought I might need these injections that people mention to support white blood cell production but my Onc doesn't feel they are necessary yet. I do trust him so happy to be guided by what he recommends.
Good luck today Joan and Samori. I hope all goes well for you both today for your treatment.
I had my orientation yesterday and my first doses of steroids. Although I do want to get started, I am felling a bit twitchy and have been ridiculously tears the last few days-hence the low profile. But I have been lurking in the background again and I am reassured by all the kind people who have posted on this thread to reassure that the anticipation is the worst. Thanks ladies-your posts really do help.
Good luck with the consultant today Kath. Hope all goes well.
And last, but by no means least, take it easy SeeSaw. Listen to your body and remember that this is temporary. Hope you feel more like yourself soon.
Day 7. Feeling much more fuzzy now and like someone pulled the plug on my energy bank though not really got any pain apart from a sore mouth. Spent a bit more time in bed than usual today and just washed the dishes using a stool to sit on as I was a bit wobbly. Thankfully I have someone to make meals xx
Hello Sarmori and welcome! I read your post and had to smile to myself as you sound so much like me in your preparations - I like to feel in control lol. I too have been itching around my dressing area so will take Sue's advice and try an anti-histamine. Are you being treated in Coventry? My treatment is in Leicester and I have to go in tomorrow at 1.30. In a strange way I cannot wait for the time to come round now and get this show on the road and at least find out what I am going to have to deal with!
Good luck tomorrow to both you and Anne - I will be thinking if you both and wishing us all an easy time xx
Welcome to the thread! You sound as if you are well prepared. So I wish you luck for tomorrow and few side effects.
As to your PICC line dressing - it certainly sounds as if you are allergic to it. I am, too, and had the dressing changed to a non allergic one. If you are unable to get it changed today- please make the chemo nurse aware of it. They will take it off to administer treatment - so ask them to replace it, when all is done - with a one which minimised allergic reaction.
It might be an idea to take some antihistamins today, if you can not get it changed today. It might help to reduce the itching until you have the right dressing.
Hello - I'm starting chemo tomorrow 31 August the same as you madmac and Joan. I live in Coventry, am married with two kids (13 and 10). I had a lumpectomy followed by a cavity shave because I didn't have clear margins, and then last week I had a port inserted for chemo (which is currently driving me crazy because I think im allergic to the dressing so I'm itching like mad!). I've got my wig already, a few scarves and hats, have packed a bag in case of emergency visits to the hospital, bought an eyebrow pencil, stocked up on ginger and pineapple flavoured things and think I'm as ready as I'll ever be! Good luck to everyone starting soon xx
Hi Angie51star and Kath64,
Angie51star - so sorry to read you have to go through this again. Did you have a typo in your first post 30cm???? Surely it is 30mm?
I think you might be surprised to see how chemo has changed over the years. Reading other posts, there seems to be quite a difference as to when you had your first chemo. The accompanying medication is so much more tailored to our personal health needs. Yes, some may struggle, but generally it is really not as bad as many think.
Kath64 - thank you for your kind comments, they are really appreciated and I hope it helps a little to show that we are not 'victims' or need to look like chemo patients. Time between seein consultant and chemo starting - this tends to vary, depending on when a chemo slot is available, I think. Sometimes it can be within a week - with me it was 14 days. Chemo orientation meeting, then bloods a day before chemo, which will be repeated before every chemo and then started within a week of my orientation meeting. At some units they actually do the bloods in the unit, unlike where I am being treated.
Hi See see, thanks for the update. It's nice to know how people are reacting to their treatments and also to let us know what's possibly in store for us.
Im too late to have my eyebrows done but I have bought a pencil and will be practising! Having a chilled weekend away on a narrowboat before Wednesday - it's certainly the way to relax.
Can I ask if anyone is taking ice lollies into hospital with them as suggested? Apart from putting them in a cool bag is there anything else that I can do to keep them frozen? I live 40 mins from the hospital and need to have bloods done first so there might be a delay before treatment actually starts. Does anyone have suggestions as to the best sort?
I hope everyone is enjoying the long weekend xx
I am a September starter I have 4 cycles of D.C.. This is the second time for me I had chemo 13 years ago for invasive ductal carcinoma on my right side. I have now been diagnosed with the same 30cm invasive ER+. I didn't use the cold cap last time but am going to try it. I must admit I am scared. I also have to have a Hickman line fitted as I have had bilateral lymph node removal .
Yes, I'm really glad I got my eyebrows done. I wish I had done it ages ago as my eyebrows are pretty crap anyway to be honest due to overplucking them when I was younger, they never grew back and now, at 48, they're starting to go white! Like Blueash, I went for a more natural brushstroke look, I also didn't shave my eyebrows off, opting to keep my own brows in addition to the brushstrokes. I really wouldn't recommend getting it done so close to your chemo starting now though. I got mine down 3-4 weeks BEFORE I started chemo. Now that my brows are thinning I wish I could have had the top up done but you need to wait 6-8 weeks after the first appt and my chemo had started by then. I will check with my oncologist when I can have my top up once I've finished chemo. I'm guessing I'll have to wait a few months AFTER chemo before I can get my top up. They are initially very dark at first then they sort of slightly "crust" over and become lighter after a week or so. You need to use vaseline or Bepanthen on them at first. I wouldn't have them done now if I were you due to risk of infection when on chemo. You might not lose them, some people don't. There are eyebrow powder kits you can buy with different stencils e.g. Christian Eyebrows which have a good effect.
So sorry but I missed the bit about eyebrows - anyway I had mine tattooed in a "hairstroke" style before I started chemo. Like Hazel I was not able to have the top up a few weeks later because chemo had begun by then. You cannot have tattoos done while you are on chemo - they will not heal and you could get an infection. My chemo unit will not even let me get my nails done! They said to leave them alone but I am have 6 lots of tax and that is tough on nails.
I am now past FEC number 5 and still have a smuttering of them and I fill the gaps in with an eyebrow pencil - I find it gives me the same effect - it is lower cost - although it takes a few minutes every morning.
And, of course, the 'bare' look, when at home is not too fetching. As I am on my own it is not a challenge to me, but I could imagine that some, who have partners might prefer to have a semi permanent tattoo.
Mind you, it might also be worth finding out, how long they last. As when you are on chemo, you will not be able to get them redone, due to the very high risk of infection.
i am am still on the steroids and I'm not sleeping well as a result - I forgot that!
The constipation is just slowing me down not stopping me - as it were - but thanks for your concern. 😀
Hi See See
great to hear you are doing good so far - I presume you are now off your steroids?
Be careful with your constipation - although it is welcome relief in one way - it can cause issues further down the line. If you still have it tomorrow you may wish to do something about it, before it causes you issues, such as stomach cramps and hemorrhaging when you finally get there.
I'm on day 4 of my first cycle of FEC T. Apart from a headache, which I'm prone to anyway, and a kind of fuzzy feeling occasionally, a metal taste in the mouth and some tiny red spots, I seem to be suffering few ill effects. The constipation is a bonus as it just cuts down on my diarrhoea as a result of previous surgery and Crohn's disease.
I post this to give hope for anyone about to start that it can be OK, at least initially.
Hope you are all good. And pleased to report the sun is, indeed, currently shining here.
So glad your procedure went well Joan. I am going to enquiry about this.
And I am pleased to report that there wasn't even a hint of "Lily" in the wig shopping. Probably because I made sure that the cocktails came afterwards- I am known to be a little reckless under the influence of Dutch courage. The ladies in the store were lovely and really put me at ease. I picked a wig which was very close to my current style but chose a very slightly darker colour. I frequently change my hair shade. So it was probably time for a change anyway😀 I'm back once the hair loss starts for a final fitting and as mentioned in the posts below the store will trim to exact specifications.
As I think it's prob too late for me to explore semi permanent eyebrows I visited my local Benefit counter and picked up a really fantastic eyebrow pencil, some great tips and as an added bonus some freebies. So all in all a very positive and enjoyable day.
Whatever your plans for today are ladies I hope you have a great time.