I just wanted to say i hope it went ok yesterday and you're not feeling too grotty.
I asked my onc and BCN about chemo now that I'm on the mental mend; they both said chemo was belt and braces, an extra insurance policy of maybe 5%, and didn't seem too worried I only did one. I get the impression the risks outweigh the benefits now, or rather the benefit is lost, i.e. the chemo boat has sailed, plus tamoxifen, rads and surgery are doing/have done their part.
Just hoping they are right, that I'm lucky, and tomorrow's chest CT for my collapsed lung doesn't prove us all wrong.
Hi Martha.....you may be given self-administered white blood cell boosting injections (stomach) for the 5 days or so when immune system is at its lowest. Not every hospital offers these and sometimes only for FEC-T. My Onc said that you are more at risk to yourself during 'nadir' days from food (you may be told to follow a 'pregnancy' type diet i.e no soft cheese, runny egg yolks, unpasteurised food, shellfish, pate, takeaways etc.) or from cuts/grazes. Sensible to a avoid crowded places......antibacterial hand gel will become your best friend! I worked throughout chemo in a school (business manager) and was only hospitalised once with very low neutrophils....infection unknown but likely to be mouth ulcer masked by oral thrush!! Macmillan has a very good factsheet 'avoiding infection when you have reduced immunity' which may allay some of your fears. Hope Wednesday goes well for you.....
Maryland is correct, Emend is the brand name, you need to ask for Aprepitant but to be honest i'm amazed they haven't heard of Emend, you may be ok on the other anti sickness drugs, most people are and this is why they wont prescribe Emend to start with.
Let us know how you get on.
Emend is 'aprepitant' and I think is an 'escalation' anti-sickness treatment if the standard anti-nausea meds don't work and you are actually sick. Usual anti-nausea drugs include ondansetron, domperidone, metoclopramide (often a combination) and you will get them IV before chemo and then tabs to take home for a few days. The thread I was part of last year recommended ginger beer, crystallised ginger, couple of ginger biscuits before getting up, travel wrist bands to help with feelings of nausea, along with eating little and often as well as lots and lots of fluids......
I only had 6 x FEC75 without the T, I was very sick after my first one but was given Emend after that and I was fine. If you're anything like me (and you do remind me of myself!) you'll just want to get started asap and start ticking them off. The very best of luck with your treatment.
At least you have your plan now with dates so things are moving for you thats good. BCN phoned me yesterday just to confirm that I will be starting chemo in the next couple of weeks then surgery. Just waiting on dates for scans x-rays etc.
Well ladies - It went well today and I signed my permission slip for chemo.
I'm have FEC x 6. Chemo all set for 29th May. I've got the chemo tour tomorrow then heart scan on Friday. I'm booked in for the 30th for my wig appointment and the 11th June for the look good feel better session. So all systems go, this train is finally leaving the station 😉
Cassowary - I'm HER2-, but the info you have given will be valuable to others who read this thread.
Lola / Martha,
just wanted to post regarding HER2+ diagnosis and choice to receive FEC chemo prior to starting Herceptin.
It is possible to have FEC rather than FEC-T, but unlike with T, you cannot over lap the two treatments, so the full course of six chemo must be finished first.
hope this helps clarify for anyone who is reading this string new to the whole topic.
Hi Lisa79 - I'm sorry you didn't manage to complete your chemo. Can you re-visit this with your BCN and ONC?
Hi PG - Chemo is not something that I'm looking forward to but something which is very necessary, especially since I have a grade 3. I've been on most of the chemo threads (Valentines, AAA & Moonbeams) and have got some great tips. I only mention FEC-T because that seems to be the most popular lol. I know than come Wednesday they will may put me on something different - Watch this space 😉
Hi DeeDee - I am so, so sorry to hear about your results. In all honesty, I said to my onc (who is also my surgeon) on the day of my op that if he had to do a mx then he had my full permission to do so. It is very scary this whole cancer thing and I completely understand your chain of thought. Be strong and remember that any decision you make has to be the best one for you - That is something which I am learning throughout this whole process. My fiance and I will work round the school runs, rugby and horse riding, just as long as I'm getting the full treatment that I need. Stay strong sweetie.
Hi Twizzle3 - I cried too lol. Crying is an emotion that I'm becoming very familiary with over the past 2 months. Good luck with your RAD's.
Thank you everyone for your support. It's been out of this world.
Hey Martha, great news on your results. Remember we were getting our op on the same day. I got my results on the 16th. Unfortunatly my results weren't as good was told it was aggressive grade 3 positive lymph nodes involvement and more cells found in my breast. Need more surgery Mastectomy, haven't decided yet what to do about reconstruction then chemo and rad. Was also told by my doctor to make an appointment with my gp to get the marina coil out as this was feeding the cancer. So as you can imagine my head is all over the place and very emotional just now.
I was meant to have Fec-T, but when I had my first Tax, I ended up in hospital with zero neutrophils, a temperature of 38.7c, a mouth full of barbed wire (or so it seemed) and I couldn't stop shivering I was so cold. However, on Fec I had no sickness, didn't even feel nauseous. The only real SEs I had as the February Valentines will vouch for, were a sore mouth, a bit of constipation and a sore bum. None of them nice, but much better than throwing up all over the place so I'm not complaining. Especially now the soreness is going away. Anyway, the outcome was that my onco put me back on Fec and I have my last one next Thursday (May 23rd). Maybe I've misunderstood, but I was under the impression that Tax was only offered to those with nodes affected, like me, or those having Herceptin like Lola.
Lida, sor sorry to hear you had so many problems and couldn't finish chemo. Wishing you luck for the future.
Just wanted to say congrats on your test results. The stats sound good and it's great news that your margins and nodes were clear, and no LVI.
Hope you come to a decision on chemo that you and your family are happy with. Chemo is such a big thing and whatever you decide I think it's important to think about the 'whole' you, but also how you'd feel if you did X then Y happened. Alas, I do regret not finishing chemo (I quit after 1 FEC as I had a mental breakdown) as I had LVI and a micromet in a node, but only a 1.5cm tumour, but as a whole I couldn't cope with chemo at the time. Wish I'd come here and asked for advice, rather than bury my head in the sand! Time will tell if I made the right choice, I'll always wonder 'what if I'd finished chemo?'
What would we give to have a crystal ball, or to be all-knowing! Keep in touch.
Cheers Chascat - I made a list of hints/tips that I've gleaned from the chemo threads and I've seen Emend being mentioned before (expensive I understand lol) so I added it to my list a couple of weeks ago. (I was getting mentally prepared back then).
I also started to think today about my smear test - It is due next year (3 yearly) but I want to bring it forward to now. About 13 years ago I had abnormal cells and had them removed, but they turned out to be ok. I want to cover everything at the moment and I've also been thinking about a complete hysterectomy - I understand they can also remove the cervix during that procedure.
I had a strange sense of calm last night when I went to bed. I finally felt that I didn't have to stress or worry anymore until my smear popped in to say hello to my subconcious lol. Hmmmm, decisions decisions!!
One step at a time. I think I'm starting to get way ahead of myself now. So until the 22nd there isn't much I can do. xxx
Those prognosis statistics look pretty good to me!
I'm not having any FEC at all. I am having 6 cycles of Tax and Carboplatin. I need Tax because of being HER2 positive and on Herceptin. I know people are afraid of Tax, but quite honestly I have found it OK. I have read horror stories of FEC and sickness, with the anti emetics causing havoc with constipation, but with Tax there is no sickness or nausea - a big plus in my opinion. I would rather run the risk of bone pain, which, touch wood, I haven't had as yet (cycle 2 day 17)
My dx was a grade 3 invasive ductal, 15mm. no vascular invasion, no lymph node involvement, hormone negative but HER2 pos. Clear margins on lumpectomy (eventually!).
Thanks Meggy - Not sure why I was borderline as like you a thought it was a done deal for Grade 3 however, I think that because it was localised (stage 2, although my hospital doesn't really use staging) this is why I am borderline. So they are leaving the decision up to me.
Even if I just have FEC but without the T atleast I will be doing something and even just with FEC it is increasing my chances. If I add in the T then I think there is an additional 0.4% over 5 years and 1.2% over 10 years of non-recurrence.
With the help of some advise, I am looking at the following:
Without Chemo & With Tamoxifen
94.7% over 5 years & 86.2% over 10 years
FEC and Tamoxifen results were:
96.6% over 5 years & 91.1% over 10 years
FEC-T and Tamoxifen results were:
97% over 5 years & 92.3 over 10 years
I'd be happy with FEC only and Tamoxifen for 10 years instead of 5. Although there is room for a debate here 😉
Hi Martha,Great news.I have a grade 3, 35mm tumour and will be getting chemo, I thought this was standard on grade 3 but I was obviously wrong.I would do anything that would help not to have a recurrence later . A wee bit extra insurance.you have to go with what you think is right for you as you are the one that will have to live with it. Take care meggy x
Well, when I spoke with my onc yesterday, he was rather quick in explaining the results to me. However, after my call with my BCN afterwards, she broke it down and said that was the best possible results that I could have hoped for.
Also, as a little additional note, when I had my byopsy results I was told PR+ 5/8, but yesterday my onc said 5/10 and the BCN corrected him saying 5/8 but he was insistant it was 5/10. All rather confusing. Anway, because the PR status was done at byopsy, they are going to re-test. I think I should get the final results of this next week on the 22nd. Not fussed really as I know it's PR+.
At my hospital chemo is always recommended for grade 3 cancers, whilst I was having my treatment there was a lady in her sixties having chemo for a tiny 2mm tumour, but it was a grade 3 and as it's the most aggressive she was advised to have it, my tumour was only 19mm and grade 2, I only had a 3% benefit from chemo but wasn't prepared to take the risk of being one of the unlucky ones if I didn't x
Good news Martha. Xx
My hospital are doing trials for the Oncotype dx test which I have signed up to. It may be worth asking your BCN if they too have the trial available. It will give you a more conclusive report of the benefit of chemo to someone with your type of bc.
Good luck with your appointment xxx
Hi Martha, Just found your thread as I was checking through latest posts. I too had a grade 3 invasive lump - smaller than yours, only 15mm. I had clear margins and no node involvement so considered grade 1. I too am HR- and ER 5/8. However because of the grade 3, I was given no choice - told I needed chemo which I have gladly accepted. Not enjoying it too much but I sleep better knowing there is nothing else I could have or can do to improve my chances. By the way, I'm 62 so don't let age influence your decision. Definitely ask to go through adjuvant online with your onc. Your prognosis will be good.
Best of luck for the 22nd
Glad to hear it was both of you on sofas- not that it was just you on there 🙂 I was going to recommend stern words with your OH!!
i do feel similarly to you about the chemo 'choice' - I think I will have to hear that risks are very low for recurrence before I choose not to do it. But we will see.
Keep us posted!
JCJ - After my conversation with my BCN earlier tonight, she was really positive about my results, especially as the tumor was smaller than origianlly thought and because it was her2- with no nodes and no other spread.
She said that she will give me all the stats when I see her next to discuss chemo.
OH said that if it's what I really want then he will back me all the way 😉
Thanks PG - I think once my OH here's what the chemo nurse has to say, he may well change his mind. It will be a bit of a juggling act with his work & the kids, but I'm sure we can work round it. In all honesty, I'd feel safer having the chemo 😉
Thanks Caroline - It was a little bit of pressure off, now I can concentrate on my RAD's next.
Cyble - Because I had a Grade 3 Invasive, I am strongly swinging towards chemo and that's even before I speak to the nurses. I want to fight this every step of the way and if it mean a little pain for long term gain then count me in 🙂
Morwenna - I was expecting the worst news. I even gave a little cry of relief when my onc gave me the news. I kind of knew the results when I walked into his office because my BCN wasn't there at the start, she only came in when he examined me. She's been there the rest of the time when the news has been bad lol. I had a little smile on my face when I saw she wasn't there, I told her that and she said she didn't take it personally hahaha.
Thanks Smiley and Chascat - It's been the best news ever 😉
Jackie - It was comfy sleeping on the sofa. We have 2 x 3 seaters so OH had one and I had the other. It just meant we could be together but if I was having a restless night, then I wouldn't distrub him lol
I am actually just off the phone with my BCN and she gave me an appointment for 22nd to see the Chemo nurse and discuss my options. I will also get my RAD schedule around that date too. I was given more information about my tumor.
Size: 25mm (originally told 3 cm), so a little smaller.
Stage: 2 (but my hospital doesn't really use staging anymore)
ER + 5/8
No lympho-vascular invasion
Roll on the 22nd 🙂
Thank you so very much to everyone for the congrats - This forum has been invaluable to me and I really don't know what state I would have been in without all you guys.
Hi Martha. great news about your clear margins and nodes.
I was borderline for chemo. My onc showed me the adjuvant online prediction tool which showed that statistically chemo could improve my survival, after 10 years, from 80% to 85%, but this was AFTER she'd spent several minutes explaining that chemo frequently has permanent side effects and that we need to think carefully before subjecting the body to it unnecessarily. Had I been younger, or my tumor HER+ or ER -ve, I'd have been TOLD I was having chemo. If it had been just a little bit smaller, they wouldn't even have mentioned chemo, as I had clear margins and nodes.
I declined chemo as I was 51 at dx, the age at which Mum died of a heart condition. Dad also died relatively young (73) - same cause! I couldn't see me taking another 18+ weeks out of the year, delaying my recovery and return to 'normal' for so little potential benefit (especially as I could go through all that and STILL have a recurrance/secondaries) when I could be dead in a few years of something else entirely. When I told onc, my decision she said it would have been 'overkill' in my case anyway!
I have never regretted that decision. However, you have to be happy with whatever decision you make. You are the one that has to live with it. Point that out to your OH and remind him that HE'S the one that has to live with YOU - and that if you're unhappy about your decision, his life won't be a bed of roses either!?! 😉 He needs to hear all the facts so he understands your decision. Obviously he's frightened about it and seeing you go through it. Ask your onc/BCN to talk you both through the statistics.
Great news Martha. Enjoy your well deserved glass of wine. I would echo what others have said and do what is right for you. I am amazed at how much our bodies communicate with us in subtle ways and our instinct tends to be right.
Thank you for all the support you provide to all of us on here and let us know what you decide.
Good news! What a relief for you.
I also had clear margins and no node involvement, and was grade 2. However, I was advised to have chemo because of the size of the lump, (4cm) and my age, (43). These seemed to be important factors. Chemo is certainly no fun at all, but now, 10 months on from finishing, it seems like a distant bad dream. Whatever decision you make must be the right one for you, once you have been given all the relevant information.
Good luck x
Such good news. We are in the same boat- I have chosen to go for the oncotype dx test to help with the decision regarding chemo- am waiting for those results now. Then I'll have a bit more of a scientific base, either for or against chemo. It's not cheap if you haven't got insurance, but I think it will have been worth it for me (I wonder if they will give me commission for advertising it 😉
Good luck in whatever your decision is.
I was 41 when Diagnosed, clear margins, no node involvment and a small tumour which was er and pr positive. I remember asking the onc about chemo and what she told me was that in some cases chemo can be over treatment, that years ago they used to throw everything at it but now evidence has shown different.
i decided to trust what my onc told me, I don't regret it. I think it's a good idea to talk it over with them. Depending where you are in this country I believe the advice is always different. I should have mentioned they do take tumour size into account, if mine had been bigger then I would have done chemo.
Great news today and good luck with your decision xx
I was marginal for chemo, REALLY didn't want to do it, hated every minute of it, but now, 4 weeks after it finished, am glad I did it. Chemo is horrible, but it's time-limited, and you get out the other end and can move on. As many other people have said on various threads here, it really does help psychologically to know that you've thrown everything you can at the cancer.
The low effectiveness of chemo is startling, especially that you have no way of knowing if adjuvant chemo has worked or not unless the cancer comes back, when you know it HASN'T worked , but a 7-8% improval in survival probabilities (which was my personal statistic) was worth having, even if the benefit is uncertain.
Great news that you have clear margins and no nodes involved.
I agree entirely with Lola. My OH wasn't keen on me having chemo either, but didn't stand in my way when I signed up for it. When we found out I had vascular invasion, he admitted he was now rather glad I did it.
I know you will make the right decision for you, good luck.