I think it takes about 30 minutes to go through the 3 drugs. I haven’t timed it directly and im quite big so I have quite a lot to put in. The epirubicin goes first so that the vein is in good condition. This is the red one and it turns your pee red. Then I think they do cyclophosphamide and the the 5fu. Then they do steroids and antisickness. I then try and keep my main drip up for 30 minutes to flush everything through the vein. Depends on how much I has before how much I need to pee (it’s a bit of a pain waddling to the loo with the drip) and how sleepy I am. Once that’s done the canula comes out and if cold capping you have to wear it for about 90 minutes. This is where I generally go to sleep.
I really feel for you regards date changes it can be unsettling. Keep asking them the questions and they should give you paperwork for bloods for the next round and a date before your leave.
Hope that all helps you xx
Yes you will have a dexamethasone injection and some to take for 2 days after chemo. I also take my afternoon sickness whether I feel.feel sick or not. It was tip I learnt with dad becasue if you do suddenly get nausea you may not get the tablets down. I’m a wuss so prefer to take the tablets than find out if I’m going to feel unwell. I take a note book and write down everything they tell me to do because I don’t think I’d remember otherwise. My next one (third) is 28th so we will all be in this together! Xx
I’ve just looked it up and it’s to with the Docetaxel that you have steroids something to do with allergic reaction and water retention!!!
Hope I haven’t freaked you out xxx
Does anyone know how to post a picture to the forum?
Well I’m up late as been watching films… twiddling my hair and out it came! Looks like it’ll have to be shaved tomorrow… will be 2 weeks Wednesday since first FEC … was hoping to keep it till xmas but hey ho…
Hi all,
Wanted to wish you all well as you start out. I started in June & finished in September. Not the easiest of times but the support you’ll get from each other is second to none.
Rooner999 in answer to your question about vaginal dryness, oh yes, it happens! Especially for those of us who are ER+ve. Chemo can interfere with oestrogen production, stopping HRT will do it and later, hormone therapy (tamoxifen, anastrozole etc) will too. I can recommend Hylaofemme - used twice a week, comes with applicator, but other preparations are available. Try Sylk, Yes, or Pjur Med.
Hope that helps,
B x
Is anyone private for their chemo or all NHS?
Hi Cookiepuss and everyone. Interesting to see what Cookiepuss was sent home with. I was given only the steroids (same as yours), 2 days of Ondansetron anti nausea and Domperidone. No white blood count boosting injections till I have the T, and those will be self administered (gulp). I had already bought Difflam and had lactulose from April hysterectomy but they weren’t offered. As I was so sick after my first I am to have Emend this time. But I had to get the prescription from my GP, and then the trauma of Boots telling me it’s a quota drug so they might not be able to get it. They’ve thankfully rung this morning to say they have it waiting for me. I am to take the first one 60-90 minutes before chemo. My premeds last time were steroids and Ondansetron tablets about half an hour before chemo was started. Different hospitals clearly do quite different things. I’ve no complaints mind you. I was cold capping but have decided not to continue. So head hair currently fine but it’s shedding elsewhere now. I now have no nausea but I have had stomach trouble the last week, alternating between constipation and diarrhoea. I am also quite breathless on walking, especially upstairs, and was frightened about this until reassured that it’s completely normal. Something to do with haemoglobin levels. My second FEC is on Friday and I’m praying to be less sick. I’m reading all the posts and hope all of you ladies are doing ok. Xxx
I was also only given steroids and anti sickness for 2 days after first chemo. I had Emend before and for 2 days after and this seemed to work ok. I was very nauseous but only sick once. I didn’t need to take the extra "emergency"anti sickness. Noone has mentioned anything about anti fungal drugs.
I hope Emend works well for you Jacquie from what I have read it really effective for most people
X
Hi ladies!
Yes, I am still here, lol - although busy with Christmas preparations.
Thank you for asking after me - that is so kind.
I tend to hover in the background, once the thread is upp and running and all are supporting each other.
But of course - should any questions, queries arise, which cannot easily be answered from othere - I shall certainly be posting to the best of my ability.
Most of you will, by now, have experienced, that although on the same treatment - the effects are very different for each and everyone of you. And that accompanying medications also vary wildly.
Hence the 'breadth’of my post, when I started this thread. Each area seems to have a different way to handle the bloods, chemo, etc., too. My medication, dor example, was always given to me by my chemo team. I always checked, before I went, that I had enough of everything to get me through till the next treatment. And if going to be short, told them so - and then took it home with me.
I also spent some time with my head surgery nurse and my GP - explaining what was happening, to ensure I had immediate support for prescriptions, etc. - should it be needed. After all, our GPs are general practitioners and not cancer or chemo specialists. It worked brilliantly! As I was on my own through all of this it seemed wise to ensure to have all the relevant support set up and in place, whilst I was still able to. My breast care nurse, GPs practice, district nurses, chemo team, chemo helpline - all were absolutely brilliant!
Just thought of it! - re wigs…it might be a great idea to wash them with the recommended shampoo first, before you start wearing them. It softens the hair and structure - making them look immensly more natural and softer.
Recommendation is to wash them every 10 wears…
Hugs
Sue xx
I got the gcsf injections because I asked " how would you treat me differently if I was private"? Although with dodgy liver function I probably would have got them anyway because the antibiotics would be worse for the liver if I got an infection. I also about Emend as it seems to be a really good anti sickness and I suffer with dizzy spells and travel sickness but onc said he’d rather wait and see if I was really sick first otherwise he would have no other drugs to try. As it happens as London as I lie down the first day or so and don’t rush about the ondansetrone and steroids seemed to have worked. I took 1 metrocloprimide day 5 of round 1 as I got the dizzy sensation and chemo nurse said it was better for the tummy than ondansetrone. I have got away with constipation but I eat 10 prunes the day before and on chemo day. I drink 4 litres of water every day and I try to eat corn and sweet potato to push everything through. I also do so hip rotations and few gentle moving exercises to get everything going. Once the gcsf and lansoprozole kick in I have to be careful as things go the other way! Xx
Got all my results back yesterday: HER2 positive, so they’ve added in hercpetin to the mix. Tumour is bigger and stragglier than they thought, so it’s 90% sure I will have a mastectomy after the chemo anyway, and the CT scan showed no evidence of spread beyond the lymph nodes. Hurrah!
Re antisickness: I had Emend (aprepitant) on the day and for 2 days after, 4 days of ondansetron (twice a day), dexamethasome (steroid) for 3 days and metoclopramide to take when needed. After vomiting all night on the first night, I got nozinan (levomepromazine) via injection plus something in a drip, and after being discharged, told to take the metoclopramide 3x a day for a couple of days, then back to as needed. Just met with the oncologist who has confirmed that next cycle I will get the nozinan in tablet form to start with as they don’t want to see me back on the ward. Currently on antibiotics as a precaution because on Friday (day 11) my white cells were at 0.7, although they are up to 1.7 today. Fingers crossed they keep going up and are high enough on 28th for FEC2.
Hi All,
I have had a call from the hospital to say there was some activity found in the middle of my back from the bone scan. I have to have a MRI to rule out everything, but my only concern is it is cancer. I have had a clear CT scan & nothing elsewhere on the bone scan that seems to be an issue but I am worried sick. I was told it can be wear and tear etc but haven’t had any issues with my back. Can anyone offer me any reassurance please?
Thanks,
Jayne X
I don’t know if this helps Jayne but my Mum also had activity/hot spots on her spine on her bone scan. They decided they would re scan if she developed any pain in the future. This was 12 years ago and so far she has had no further issues. Sending you hugs I know how very worrying waiting for scans and results can be xx
Jayne I rea hope you don’t have to wait too long. Sending hugs. Not the same worry as Jayne but I’m really depressed that two of you have been sick even with Emend. I’m so desperate not to be sick over Christmas. When I was sick last time I was given a hospital prescription for nozinan. It was out of stock. Two weeks later I’m still waiting for it. The nurse told me Emend is fantastic and she was sure it would work for me. I’m not so sure now. So dreading Friday.
Regarding anti sickness make sure you ask what combination you can take. If you xan rake 3 or 4 medications take them all even if your nausea passes for a few hours. I also think plenty of water before during and after is key as it protects the cells in the stomach. I tried to brave out the indegestion which with hindsight was very silly as not only was it really painful it caused my gall bladder to become inflamed and further affect my liver. Good luck xx
Wmj I had my scan results today but have been worrying about them for weeks. Particularly with a dodgy liver. When my dad has his ct they found “hot” spots on his lungs, pelvis and leg. On mri none showed up. If you are on gcsf that may cause high activity that absorbs the contrast and therefore shows up as a hot spot and the pelvis is one of the places where white cells are made. It is hard to remain positive but we are all here to listen/read and hopefully it helps to sound out on here xx
WMJ hang in there pet, we are in this with you X
Its hard to beleive that this could be any number of other things especially when you just got diagnised once. Being strong gets harder when you are already getting worn out with all the extra stuff hitting us. Dont be afraid to have a rant or a cry if it helps…works for me
Had a weird day or so, went to bed night before last still with the worst headache I had ever had blurred vision and whistling in my ears decided if no better would phone in morning…woke a couple of hours later feeling like someone was drilling into my skull almost screeming pain got up took my temp and it was 37.7 vision really off etc phoned the chemo ward they said time to go to a&e which is where I spent the next 12 hours !!!
To add to the fun I had a stiff.painful neck and rash accross my chest so they were concerned about meningitus amongst other things. Ended up on a drip for anitbiotics fluids pain relieft and different doctors and consultants came and went with varying opinions on what should be done with me ??
They discovered that my white cells were pretty muchnil , and had practically no nurafills non?? and seemed shocked despite knowing that I had chemo 10 days previously, by this time my head was so mashed with the pain/ painkillers that I wasnt sure what was going on much of the time except that they seemed to have a hell of a job getting into a vien and keeping it open.
I finally got out of hospital and went home in a state of shock really, my left arm is black and blue my hand is up like a balloon and hurts when I move my fingers from them tying to get a canula in.
The head pain vanished as soon as it came and the temp vanished too …I have no idea if it was the antibiotic drip they gave me or what but I had to have a brain scan ct today and waited in terror to find out if it was clear of mets as one of the concerns was that a tumour could be the cause of the sudden pain swelling vision hearing issues. Results were within half an hour for which I am so grateful and all clear. I could have sat and sobbed with releif
I really am getting so I have had enough of this rollercoaster and I know that this is probably just the start…I dont think Im very good at this lot can someone take over for a bit so I can clear off and live my life again please ;}
WMJ keeping everything crossed for you. I know it’s hard but keep your chin up.
Andreaj sorry you’ve had such a horrible time. Hope you feeling much better now.
Jacqui48 I hope your next treatment goes well and you have minimal effects from it.
I feel well and pretty normal at moment. Enjoying the feeling and certainly not taking it for granted as there is no way of knowing when things are going to change. I think that is one of the toughest things the uncertainty of reaction to the treatment. What a blooming roller coaster ride, I can’tell wait to get off!
Wishing you all a good day tomorrow. Xx
I’m tight chested and have a headache tonight. Keep hoping it’s a bit of stress and low red blood cells. Andrea sounds like you had neutropenic shock so glad you are feeling better.
Hopefully tomorrow will be a calmer day for us all. 1 week before round 3 for me x