Hi all - just wanted to "pop in" - it's difficult to keep up with where everyone is in their treatment cycles but reading through the posts just goes to show how different people's experiences are. I have been pretty up and down emotionally since my first FEC on 20 Dec. Physically I have been really nauseous but that (hopefully) seems to have passed and I am eating OKish now. I've had a horrible patchy tongue (nice) but was provided with some drugs for that and that seems to be getting better.
I haven't cold capped so am waiting for my hair to fall out - even typing that feels surreal. I'm on day 8 and no sign of any loss yet but my hair is SO lank and feels really greasy. I've got a wig and scarves and things ready - but I think I'm going to struggle with the reality of dealing with them everyday rather than just trying them on.
However - today and yesterday have felt more "do-able" so I am trying to hang on to the more positive days.
I'm not really a massive social media fan but it does help to know that there are other people going through this.
Thank you! I didn't get Akynzeo but had Metrochlopromide (plus stronger anti-sickness meds). I was told to take Metrochlopromide only for three days after the chemo but have some left over and have been wondering whether I could take one if needed. Will talk to the pharmacist about the anti-sickness meds before the next chemo.
Yes, IVF on top of (or in between) everything else was, let's say, an 'interesting' experience, but (after much soul searching) I chose to see it as something positive to do amidst all the other stuff.
My Onc recommended FEC as she considers the toxicity level of FEC-T as potentially too high in my case (I was recommended chemo primarily because of my Oncotype test results (25) and because I might want to interrupt HT after two years in order to try to get pregnant ).
However, I'm going to have another word with my oncologist about the regime because I've read (and been told by other oncologists) that T might be of additional benefit in cases like mine. She is happy to have the conversation - I've already got an appointment in January.
I'm also aware that there are significant differences when it comes to which chemo regimens are recommended both within the UK and beyond (for instance, guidelines between Germany and the UK differ, and treatment in Italy might be different from treatment in Denmark). Having said that, If you already have peripheral neuropathy, then T would be out of the question not only here but elsewhere also.
In the end, I think it is important to weigh up risks and benefits, and quality of life. I'm still pondering about that question.
Yes the bleeding has stopped thankfully, but thank you for your good wishes. It does get hard to keep up with where everyone is at, but its nice that its such a supportive group of women on here.
It must have been hard for you to be thrust into IVF on top of the breast cancer diagnosis. I looked into IVF in my late 30's/early 40's but decided to just let nature take its course and hoped for the best. It didn't work out for me kidswise but as it was my choice not to do IVF I was ok with it. As luck would have it though I'd just booked onto a fostering/adoption information evening when I got my cancer diagnosis...so that option is now on hold!
I believe you said you are doing 6 x FEC, which is the same as me. A question to you and all the other ladies just doing FEC. Do you know why you've been put onto just FEC as opposed to FEC-T? I know I'm just FEC due to already having some peripheral neuropathy, otherwise I believe I would have been FEC-T. I've been doing some research into chemo drugs so curious into reasons why other oncologists have gone for Fec over FEc-T.
love to you all xxxx
ps - my hair has started prickling...yikes!!!!
I'm so so so sorry to hear about your experience, and I really feel with you. I keep fingers crossed that today's blood tests will not show you're anaemic (although from what you're saying it rather sounds as if you might be). I was explicitly told to report any unusual bleeding (that lasts for more than five minutes) - and from what you describe your bleeding has definitely been most unusual. Is there anyone - your oncologist, a BCN - you could get in touch with about how this situation has (not) been handled? I understand the limits of protocol/tick-lists (they seem to be everywhere), but common sense is also needed, especially if someone clearly is in need of help.
I hope you won't have to deal with such a response from anyone in the team looking after you again. It's so hard to be in this situation, and it makes it much harder to muster the energy to be your own advocate as well. I remember thinking that I really wanted my bleeding/period to have finished before starting the first round of chemo (I had had an emergency IVF and expected a heavy period); nobody else seemed really concerned about that but I think they should listen to what we're telling them, too. We know our bodies best, after all.
Wishing you much strength (and good blood test results),
PS: Just realized I had been looking at an older part of the thread and that some of the issues have been resolved now. Still - all my good wishes stand, of course!
I haven't experienced the tenderness, yet, but I was told it's one of the tell-tale signs of the process of all hair coming out. The hairdresser - who is looking after me/my wig - also said that they would not recommend shaving the hair but having it cut really short (all the hair will go eventually, but cutting it really short makes it easier to deal with what's happening - psychologically as well as practically). Am waiting for this to happen with a bit of trepidation, I confess.
All the best,
Hi Shi - and everyone else,
Thanks for sharing this re UTI. I experienced a burning sensation when urinating right after the chemo and since I just had had a UTI I rang up the cancer helpline and ended up back in hospital for part of the night just to be checked and given more antibiotics to look after the bladder infection. Just finished taking the meds yesterday - hope it's now all sorted but would definitely go back again if needed.
I've also had a bit of a cold these last two days, and everyone I've spoken to on the phone (to ask for help re when you need to go in and which symptomps you can manage yourself) has been very nice and helpful. It's my first cycle of FEC, and I (and my husband) am (are) still very much figuring out which of my 'symptoms' are 'normal' side effects of chemo and which could point to a more serious problem. Finding it a bit nerve-wracking to be honest but at least I know that there definitely always is help out there.
Side effects have been ok so far, nausea and tiredness are probably the most noticeable so far (I don't like either but really dislike the first). The steroids disturbed my sleep quite a bit but gave me the energy to make more of the festive period. Once they had left the system, I noticed how tired I really am.
Let's keep fingers crossed the cold symptoms disappear fully and the legs recover from their wobbliness, too. Might ask for stronger anti-sickness meds for the next cycle. Does anyone get Emend? (I've heard good things about it).
Warm wishes to everyone,
Just wanted to thank you for your kind thoughts and say that I'm also in a similar position age and treatment-wise: (up to) 6 cycles of FEC, then radiotherapy (not sure how many), and then HT (for at least 5, possibly more years). I just turned 41 this November, no kids (yet - haven't quite given up hope, though).
Hope that your festive period has not been marred too much by SE.
All the very best,
Had my first FEC on 20 Dec. Day 3 and 4 I spent mostly in bed feeling shattered with absolutely no brain at all, not even enough to be bored! That is now improving. Apart from that, I've been fine, but it's really variable from person to person. Good luck!
Hi Sunnydaze. You’ll be fine. It is daunting and I was nervous because you don’t know how you’re going to be afterwards. I had cycle 2 of EC on Christmas Eve. Got through Christmas Day okay but was wiped out Boxing Day. My chemo unit is great and very supportive too. Listen to your body is the main thing. When it tells you to rest, rest up! I’ve got a PICC line in which makes it easier.
I’ll be thinking of you tomorrow xx
Thank you, Shi. I have checked with the helpline. My bloods are fine and the fatigue has improved slightly. I have my next chemo tomorrow (27th) and I'm hoping the effects may be less severe. At least I know what to expect this time xxx
managed to go out for Xmas dinner yesterday, was lovely! But soooo tired, spent the rest of the last 2 days in bed. Apart from that chemo side effects OK so far, but only up to day 7.
Hope everyone else had as good a time as possible
Merry Christmas everyone, I hope you are all feeling well enough to enjoy the festivities.
I will be joining my husband to mas in the Catholic church this morning, he is very religious and he goes every week, but I am not so much. Christmas is the only time they see me there. I said to my husband "everyone will look at me and think she doesn't look very sick at all". They pray for me every week you see, I am on a special prayer list, and I still look healthy with a full head of hair and everything. He said "don't worry, they will think that prayers are being answered". Bless him
Thanks for all your good wishes. I'm pleased to say that the bleeding finally subsided last night, now just a trickle. And the accompanying headache left this evening. I'm finally feeling almost normal! Amazingly after all that blood loss my blood results came back ok today, only white blood count was low at 3.2 (the normal range being 4 - 11). But looking on the forum this doesn't seem particularly low compared to others.
I'm glad to hear your pain has eased now marykamille. But sorry to hear you now have dental issues. Its so scary all the problems chemo can throw at us. I hope it doesn't delay your chemo. I think we feel very similar about lack of support from Oncology. I'm just hoping that should I need further support I'm proved wrong and they're great!
Anyhow I know a few ladies had their chemo over the last couple of days so I hope you are all doing ok.
Wishing everyone a happy and restful Christmas. This time next year this will all be a distant memory!
Take care all xxxx
ps daffydilly - I don't have a picc line but I know some of the other ladies do so hopefully they'll be able to help x
Anyone else having trouble keeping PICC line in place? Hospital gave me a stockinette tube but it’s too big. Tried to buy some more but chemists only have compression ones or crepe bandage. Feel there must be a better way?
MaryKamille. I decided to gave my hair done in the salon though they did offer for me to go downstairs. I knew I could hold it together and not cry if I was in the main salon. I haven’t got a wig as I found the lady at the hospital really irritating but I’m not mentally ready for a wig yet. Been on YouTube for scarf tying. I look dreadful but I’m still alive and it will grow back.
Just saying a quick "hello" on this thread. I had my first round of Taxol on the 18th. It should be weekly x9 (then fortnightly EC x4) but Christmas and New Year will change things around a little.
I had to call my helpline after 24 hours when my temperature spiked. Spent the night in A & E but all fine.
The next day, I found a new and interesting lump next to the existing lump... I'm now on antibiotics for an abcsess.
Apart from that, my only real problem is tiredness. I'm so tired I can barely lift a cup of tea to my mouth.
An infection maryKamille? I was told an infection is very dangerous as our bodies' immune systems are down and cannot fight it. According to my care team, I have to check my body temperature 3 times a day (before taking paracetamol if I have any) and if it is over 38, I have to go to hospital immedialy and report at A&E. "Even if it is at 2 am in the morning ". So, I am surprised your oncologist takes it so lightly. He was probably joking but it is not funny.
Hi again angelblue I have been catching up with your experiences so far and I admire your responses but you shouldn't even be giving a thought to working it all out for yourself. Yours are much worse than mine.
I saw the oncologist on Friday last and when I repeated what the nurse had told me - there's no beds and you would only have to wait for hours and hours for pain relief in A & E - he just said that the hospital needed the beds for more urgent cases!
So cancer and chemotherapy and severe pain after the first session is non-urgent then?
My pain has gone - I got excellent relief from the gp in the end. The oncologist said my pain was all co-incidental and nothing to do with chemo. Probably had an infection he said. He thumped my back and said could have been a touch of pleurisy!
He did wish me a Happy Christmas.
I am amazed at how little monitoring I have had and am at the stage where I expect none for the rest of this treatment. Yes, I will have blood tests done at my gp practice 2 days before the next Chemo but that is it! I already have a liver condition and it is my gp who gave me reassurance on that - he looked at the blood test results.
Try to relax and have a good Christmas. Every good wish, angelblue. XX
glad eveyone seems to be doing ok. Although I was lucky with the usual side effects I'm still bleeding and its really getting me down. After the complete unhelpfulness of oncology during the week I went to my GP on Friday as I felt so low and tired. She was absolutely fantastic. Even though theres a strict 10 minute appointment policy I was in there for 30 minutes. She tried to do an internal examination but when she saw how much blood I was losing she ordered immediate blood tests including one for blood clotting. The results should be back on Monday. But as I'm due my pre-chemo blood tests on 27th and seeing oncologist on 28th I can only think that my next chemo will be delayed due to low blood count....unless I miraculously stop bleeding tomorrow...fingers crossed!
Hairwise I still haven't lost any, which is a miracle when you combine the chemo with heavy blood loss. That said though my hair has gone weird and lank. That combined with the fact I'm now translucently pale but with red eyes...yummy! If anyone said I look like dealth warmed up I 'd take it as a compliment!!! Gotta love chemo!!! xxx
Well done Nellie, make sure you call the helpline if you need something to make you feel better such as anti sickness meds. It will get better.
Well - have done first session of FEC - on Thursday. The session itself was fine - just felt like I had a foggy head afterwards but within about 2 hours of getting home I felt really nauseous and tired. Couldn't move without feeling like I was going to throw up. Friday was a bit better and today I've just been quite slow. In view of what they are pumping into us I wouldn't expect to get away without any side effects but it's still all quite miserable. Heyho - 1 down, I guess.
After a few days floored in bed and subsequent recovery I have now gone the other way, I am hyperactive and buzzing around. I am at day 11 of my first cycle.
After one cycle of EC my hair has nearly all gone. Been to hairdressers and had it cut really short. May go back next week and have it shaved off.
I feel much better now, just taking it easy. Hopefully I can enjoy my holidays until the next cycle.
I have BC nurse at the breast centre as well, who is really caring. It helps so much to not feel alone. I wish everyone could have that. Maybe I have a high level of support because I live a 2,5 hours drive from the big hospital where there is the breast centre and oncology so that there is more local support organized?
Wow Wahini - the level of support in scotland sounds great!
I'm based in England and in my county the oncology building is on a different site to the breast care/surgery site. During my initial diagnosis and surgery I had the support of breast care nurses, but although I had a named nurse it would always be a different nurse at each appointment. Also if you call them its an ansaphone and someone calls you back within 24 hours. I've had no contact from them since moving over to oncology although there is always the option to still call them.
Within oncology I have a named oncologist but not a named nurse, it'll be a different one each time I go as far as I'm aware. My GP has been great and very supportive since my diagnosis though and has said I'm always welcome to go in and see her and keep her updated on progress. I don't if anyone else based in England has better support services.
I hope you are doing well with side effects now xxx
Do you not have a MacMillan nurse looking out for you? I have one who phoned me regularly during the first week and came to see me at home today to do basic checks. He will pass on his findings to oncologist to see if they can make adjustments to make side effects less severe. This is a local guy who does cancer care. Then the GP rang me to say if there was any problem I should not hesitate to call them.. I also had visiting community nurse to give me daily shots. So I feel well looked after. I am based in Scotland.
Thank you so much for your response. You've put my mind at rest as to why nothing is being done now and it makes sense. You're right though - the communication of my oncology unit has been terrrible. I've now raised the worry of my blood loss to 2 oncologists and 2 nurses and no one has given me any explanations or reassurances. I will definately raise this with my oncologist when I see him.
And yes you're right that it is the weirdest thing to hope you're ok for a canulla and chemo! But from your experiences I can see that all sorts can happen and I would be lucky to have all 6 of mine as scheduled.
This forum is brilliant. Thank you again. You really have put my mind at rest, well as much as it can be when you're going through chemo!
I'll go and relax a bit and do some christmas shopping!
I hope you are doing well now after your chemo.
Take care xxxxx
Aha! I was too slow typing on my phone -- I see that transfusion would be your remedy, should you be anemic in week 3. The main thing is that letting the body recover on its own, even if it delays chemo a bit, seems to be preferred -- except in cases of severe neutropenia, where the body is susceptible to life-threatening infection. From what I understand, the GCSF injections and antibiotics and isolation room stays are prescribed specifically to keep us safe rather than to keep us on our chemo cycle schedules.
I eventually got some sleep of sorts thanks. Its still whirling round my head though...yday the oncologist said that come 27th if I'm anemic I would more than likely need a transfusion and that would delay chemo. Yet I had presented at hospital losing blood and with signs of being anemic and they weren't willing to look into it. Surely logic would dictate that its dealt with straight away to stop it getting worse and to ensure chemo goes ahead without delay. I don't know ...I just don't get it. I did think about calling my gp this morning to see if they'll do a blood test but I've not got much fight or faith left in me today! I'm going to do a bit of Christmas shopping and have a duvet day!
From what I've read within these forums I think most women have postive experiences with their oncology teams and rapid response number. But there are bound to be a couple that aren't so great...I think its Marykamille and myself who have drawn the short straw with this in the december ladies!
Angelblue. What a dreadful experience for you. I haven’t had to use the emergency numbers as yet but I hope that I get a better response than you have had. So far the chemo unit have been fantastic. I really hope that your experience improves.
Did you get any sleep.
Unfortunately I had a very similar response from my rapid response number to the one you've had. Briefly ...I took tamoxifen for 2 weeks in Nov until it was found out I needed chemo. During this time I started bleeding. It wasn't a lot but it has been every day ever since and enough to have to wear protection. I told my oncologist this when he said I would need chemo, as I was worried about the cumalative effect of losing blood everyday but he just more or less shrugged. Anyhow fast forward to Sunday and I started losing a lot more blood. I phoned the rapid response number and got a very similar 'bored' response to you from the nurse who answered. She didn't seem to like that my problem wasn't on her checklist. She said she'd speak to a doctor and call me back. Whilst waiting for the call I realised that although I'd been bleeding everyday for several weeks this was around the time that my period would actually start. When she called back she said the only thing they could recommend was that I went to A&E, but I said I wouldn't as I'd worked out it was my period. I said I was concerned though about how much blood I will have lost within the month and whether it would affect my chemo but she just cut me short so I left it.
Anyhow by yesterday I was still losing large amounts of blood and blood clots. I could tell I was becoming anemic as I was getting short of breath and having palpitations. My main concern was that come 27th Dec when I have my blood tests for my next chemo, the chemo would be delayed if I was anemic. I had an appt at MacMillan yesterday morning, which is next door to the chemo suite, so I thought I would also call into the chemo suite rather than call them on the number again. That way if they needed me to do a blood test I would already be there. Made sense to me but no...BIG MISTAKE!!! I asked at reception if I could speak with the nurse who had the emergency phone that day, I explained the situation. It didn't go down well. I was repeatedly told I should have phoned and was then kept waiting for an hour and a half. I reasoned with them that to speak in person would only take the same amount as speaking on the phone and that I could have sat in the waiting room and phoned the emergency number from there and they would have had to respond within half an hour....they agreed that was the case but still weren't happy that I was there. I then said that maybe I should go home, phone the number and then if they needed to do a blood test just come all the way back again ....thinking they would see how ridiculous that would be...but no, they agreed that I should really do that! I eventually saw the nurse who was on emergency phone duty. She acted like I was being a complete inconvenience. I was referred to an on call oncologist who also wasn't really interested. I had my blood pressure and temperature taken and he just said that my chemo may be delayed if they find out from my blood test on 27th Dec that I'm anemic!! I said (yet again) that was the reason why I'd come in that day so that they could get on top of the situation before it got to that but he didn't seem to want to take responsibility for anything so in the end I just had to admit defeat and go home.
After the fiasco of being left waiting for 3 hours for my first chemo and then my experiences this week I feel completely disheartened. To the point that its 2.30 in the morning and I've got up and made a cup of tea and written this, in the hope that getting down in writing will help me get to sleep. I've got some strong iron tablets left from when I was previously anaemic so I'm just going to take those and eat lots of iron rich food and try to deal with it myself. I was told at my pre-chemo meeting that I should get in touch with them anytime I have any concerns at all. But unless I fit their tick box of problems my feeling is I'm on my own, What we're all going through is potentially the scariest thing that we'll ever go through and we should feel supported and cared for but unfortunately I don't with the oncology team I have and it sounds like its similar for you marykamille. I do agree with you Shi in that I will continue to phone the contact number for any further problems but I don't know that they'll be dealt with....I really hope I'm proved wrong and my experience so far is just a blip...but I will be so p'eed off if my chemo's delayed when its something that could have ben got on top of this week..grrrh!!
Now thats off of my chest...and my tea's gone cold...I'm going back to bed!! xxx