Hi everyone
I’m about to start 4xAC and 4xTaxol every 2 weeks, tomorrow. Anyone else on this regime or has heard of it? Most regimes seem to be 3 weekly so not sure why I’m on 2 weekly.
Will ask nurses tomorrow but just wanted to check out with you lot too.
Hannah
x
Hi Hannah
I had AC every 2 weeks and then taxotere every 3 weeks. Taxotere is similar to taxol. I was offered taxol every 2 weeks as an alternative but I didn’t go with that option as the taxol takes longer to administer and as I had been using the cold cap it would have taken about 6 hours! I had GCSF injections between the 2 weekly AC to boost the white blood count and I expect you will have that too. Are you receiving private treatment as that may be why you are able to have 2 weekly chemo as my treatment was paid for by BUPA who agreed to fund the injections to boost the white blood count which I think are very expensive.
Love Lollie x
Hi Hannah,
I’m having the same treatment as you. I have just had cycle no.7 and apart from the first one have had them all fortnightly. I wanted the most aggressive treatment I could have and opted for the dose dense (fortnightly) AC/Taxol regime. It seems that here (Australia) they prefer this treatment for younger bc patients. I did get a second opionion and was advised that I could opt for a compromise FAC x 6 or FEC x 6 administered 3 weekly.
AC took about 1 1/2 hours per cycle and then the Taxol takes longer. On the first one they put it through very slowly to make sure that I wasn’t having any immediate reactions and then for all subsequent cycles it seems to take about 3 1/2 - 4 hours. They give me phenergan so I seem to sleep for most of it anyway.
Hope this helps - let me know if you want to know any of my experiences with this treatment. Good luck, keep strong it’s crap but entirely doable!
Anne x
Hi Anne
I will be on this same regime in the UK next week (if I go ahead with it). Four cycles of AC every two weeks and four cycles of Taxol every two weeks. I suppose the good news is that the whole plan finishes earlier than if they were three weeks apart but I was wondering if there were any other/different side effects with having the cycles so close together (I think I’m particularly interested in whether my hair is more likely to fall out).
Thanks (oh and good luck Hannah - I will be thinking of you as we’ll be on the same timetable - maybe we can continue to swap experiences?)
Elizabeth x
Thanks everyone -it would be great to swop experiences.
I had my first AC on Thursday and have just been feeling slightly sick since, this is my worst day but they sent me home with a huge bagful of anti-sickness tablets so they seem to be keeping it at bay. Sunburnt today though as forgot I had to put on suncream -only went for a walk for about an hour yesterday! Feeling tired but didn’t sleep well last night so probably down to that.
Felt ok getting started on chemo -glad we’re actually doing something to blast these little b**ds and in a way can’t wait for next one -only 7 to go and I’m really pleased it will be over sooner. Bit worried that 2 weekly is a lot harder on your body as I have a 2year old and a 2month old which is hard enough, but I’ve got a lot of support so will have to use that I think!
I am lucky to have private healthcare (through my husbad’s work) -my Oncologist is Alison Jones if anyone else has her too?? She works from Harley Street and the Royal Free. I really like her -very dynamic and upfront.
Surgery is scaring the hell out of me though -will think about that a bit nearer the time -one step at a time I think.
Speak soon and let me know how you’re all getting on.
Hannah
xx
Anne
Can I ask how you’re doing after your chemo? What tumours did you have and have they responded to the chemo?
I’ve got a small 2cm tumour in right breast and positive lymph nodes -Grade 3.
Hannah
x
Hi Hannah and Elizabeth,
Good to hear from you and congratulations for getting through the first chemo.
Here’s my experience of the cycles,
I found the first cycle of each set of drugs was the worst. I worked out that most of my problems on the first AC were due to all the extra anti nausea drugs that they were giving me. I had difficulty sleeping so took Lorazepam and then I felt really off the planet. I also didn’t like the way Dexamethozone made me feel. In the end I felt really out of control and unable to be responsible for the kids. So, for the second cycle I decided not to take any extra anti nausea or sleeping medication after day 3 unless I felt really bad and if I did I took stematil. Suprisingly I didn’t feel very sick and didn’t take very many stematil. The sleeplessness sort of stayed with me and is still going on cycle 7. I put that down to the Dex that they give you intravenously. Anyway, I felt much more in control and able to cope after I sorted out my medication.
Think its a personal thing and you just have to work out what works for you.
The other thing I noticed was that after each cycle it took me longer to bounce back and then even when I did it was always a bit less than feeling normal from the time before. The chemo seems to have a cumulative effect. I had chemo every Friday on the AC cycles. Typically this is how it went Fri (good), Sat (good) Sun (bit tired) then Mon, Tues, Wed (rough but not all the time) Thursday feeling OK, Friday (good) until the next one. I usually went to work on the Friday. I work 3 days a week and through this have usually worked 3 days a fortnight!
When I had the taxol they told me that this would be heaps better than the AC and as I hadn’t felt too bad on the AC I was quite optimistic. There doesn’t seem to be any nausea associated with this but I can honestly say that by Sunday I felt like I had been hit by a bus. Everything hurts, legs ache, muscles ache, bones ache, skin hurts. I spent 3 days in bed! On the second they prescribed some anti inflammatory and panedene, I haven’t really bothered with the anti inflammatory as the panedene works and generally I only have two days of feeling really rough and then I’m OK.
The worst news of all of this is that my hair started to fall out on day 14 of the first cycle. You’ll know when its happening, firstly your hair starts to feel a bit limp and greasy, then your scalp hurts like having it tied up in a really tight ponytail for too long. Then it starts to fall out by the handful. I ended up shaving my head because it felt better to take control. My pubic hair fell out at the same time. I still have my eyebrows (bit thin) and I am just holding on to a scattering of eyelashes (enough to put mascara on). My periods stopped when I had my 4th cycle of AC and I have been having hot flushes since then!
I can’t say any of this has been easy and its hard on everyone but having the kids means that there’s no time to dwell on how crap you feel and somehow that will be what will keep you sane and as strong.
On a lighter note: we went to a Footy Game last night and my 2 1/2 year old removed my hat! I was sitting there completely bald infront of 12,000 people! Mercifully it was a good game and I am sure that only a handful of people even noticed.
I am thinking about you both. Anne x
Thanks Anne
Your information is really useful - even if my experience isn’t exacly like yours I actually feel better knowing what you’ve gone through - It’s a guide and it makes me think that if you can get through it, so can I. It’s so difficult talking to family and friends about it who just say “oh, you will be fine” or “it will all be over soon” - WHAT DO THEY KNOW!! (sorry, a little rant there!). This forum has been a real blessing and I’m so glad to be able to talk to people going through the same thing at more or less the same time (oh and my AC doesn’t start until the 23rd of August but I feel a lot more prepared). I’m having my hair cut short tomorrow in anticipation of the hair loss but I’m going to be giving the cold cap a try and see what happens.
I’ve also taken note about what you said about the medication. When I had my two operations last month I stopped taking pain killers very early and I think that has helped a lot - being in control a bit more and understanding what my body needs. I won’t resort to too much pill popping until I understand what’s going on.
Thanks again and wish me luck for the 23rd!
Elizabeth x
Hi Elizabeth,
Know what you mean about this forum, I know all of our friends and family mean well with their positive comments but I find that reading and posting on this website has been fantastic support. Everyone seems to handle their chemo differently but its good to know how other people are coping.
Will be interested to hear about the cold cap. I have never been offered this here, my oncologist told me very directly that my hair would fall out before cycle 2 and that’s exactly what happened. Hope the cold cap works. I think that having your haircut before treatment will be positive thing. I had my long hair cut short first and somehow it is very liberating…weird but I think that just making a change and having some control helps.
I met a lady about the same age as me (39) a couple of months ago, she was also having the same treatment but was 2 cycles ahead of me. Her experience pretty much mirrored mine. She had worked most of the way through treatment and although she was completely bald eyelashes as well, she was well and was feeling pretty good considering!
I’ll be thinking about you on the 23rd, the first one is always the worst because you don’t know what you are in for. Good luck - you will cope.
Anne x
Hi Hannah,
Just a quick one as I feel like I have monopolised this thread a bit! Hope you found the info useful.
Here’s a bit of info about me.
I had a 12mm, Grade 2 tumour in my right breast. ER/PR Positive, HER2 negative. I had 19 lymph nodes removed and they found a 3.5mm tumour in one cell and scattered tumour cells 1m in another. Then they found isolated tumour cells in 2 other nodes.
I had a lumpectomy, sentinal node biopsy and then a second op to do an auxillary clearance of my lymph nodes.
I am having 4x AC and 4 x Taxol chemo, then 6 weeks of radiotherapy and then 5 years hormone therapy.
I have poor veins and have a picc line in my right arm which has made the chemo process a lot less stressful - I hate needles!!
Now that I have almost completed my chemo I am freaking out about the logistics of radiotherapy with the kids and the dreaded Tamoxifen.
Life doesn’t get any simpler does it?
Good luck with your chemo, you’ll manage somehow and who care’s if the clothes aren’t ironed and the floor needs a wash? Don’t spend your good days cleaning the house - I spend mine doing fun stuff with the kids!
Anne x
Anne -can I just ask if you’ve had surgery already or not and if not, have you had any check ups during your chemo to see if its has responded? did you have lymph node involvement too?
Elizabeth - good luck for 23rd, will be thinking of you. What ops did you have?
Thanks
Hx
Hi Hannah,
I had surgery 4 weeks before my chemo started. I had a lumpectomy to remove a 12mm lump + sentinnel node biopsy and then because there was lymph node involvement in one of the sentinnel nodes I had to go back in for surgery to remove all of the lymph nodes in my right armpit (19 in total).
I had 4 nodes involved. 1 with a 3.5mm tumour, 1 with 4 scattered cells which form 1mm in total and 2 nodes with isolated tumour cells.
I haven’t had any check ups since I started chemo, except routine ones with the oncologist about how I am coping with chemo. Its a strange feeling because like everyone else I just want someone to tell me that the chemo worked, I have no cancer left in my body and I can go back to where I was in my carefree happy clappy life before 3rd March 2007! I had bone, and CT scans before surgery and they came back clear which was good. But, it seems that however positive I am there aren’t any guarantees with any of this.
I’m often convinced that I can feel another lump in my left breast - only to discover its my ribs!
I assume from your posts that you are having chemo before surgery? Is that to shrink the lump before they remove it?
I forgot to ask you, did you have to have the ‘booster’ injection the day after your chemo? Did you notice any side effects? I have to have Nulasta which my husband gives to me on day 2? I hate needles so we are pretty comical with it. I found it gave me a sore neck and made my body ache a bit?
Also how’s your skin? On my first AC I got really spotty and I got a smokers mouth! You know where you get those wrinkles around your lips when you pout? I was gutted and went out and brought loads of heavy duty organic moisturisers (organic because I have been reading about all the crap that is inside just about everything we put on our skin and in our hair). My skin cleared up after the first AC and now I am on the Taxol the wrinkles seem to have eased up. In fact everyone keeps commenting on how good my skin looks. Perhaps its a combination of drinking loads of water, actually looking after it and all the fruit juices I keep pouring into myself or maybe I look so awful that its the only nice comment people can make!
Anyway - only one week to go and then I have my last one - Yipeeeeeeeeeeee
I have just read this again - sorry girls another long winded post. As they say - It’s good to talk!
Anne x
Hi Hannah, hi Anne
Here’s my story… (another long one!)
Found a lump in my left breast on the 6th of July, doctor thought it was fatty tissue on the 9th of July. Consultant also thought it was a fatty lump via a mammogram on the 13th of July. Biopsy confirmed it was BC on the 16th of July (9.2mm tumour). In for a lumpectomy and sentinel node biopsy on the 18th of July (had a haematoma so had to go back to theatre a second time) but all in all a very easy operation and I recovered within a few days).
They didn’t get a clear margin from the tumour and the sentinel node was positive so back in on the 25th of July for a second operation. Of the 14 lymph nodes removed only one further lymph node was affected with “several isolated cell clusters only” which was good news but of course meant chemo. This operation took longer to recover from but two weeks on I was back at work part time and am pretty much full time now (up to this point I think my story is pretty similar to yours Anne).
Regarding the clear margin and the remaining DCIS, unfortunately they still couldn’t get it all so they have recommended a mastectomy. I’m going for the skin saver where I have the LD flap but keep my skin and nipple. That happens at the end of chemo when my white blood count is back to normal – hopefully around March 2008 time. Funnily enough, I’ve been OK about the surgery – it’s the chemo I’m freaking out about!!
Oh and to top it all, I’m having tests for the defective gene BRCA2 which runs in my family. If I’m positive I’ll have the other breast removed too as there will be an 80% risk that BC will affect that one too…
Other stuff… I’m 44, I live in Surrey, I’m going private which is why I think I’ve been offered this accelerated regime, though I’ve not had any scans yet? I will ask about that this week. Oh, and the last thing. I’m trying Bio Oil on my scars so I will now put it on my face to see whether that keeps the wrinkles at bay! And I’m also drinking gallons of water which I’ve been told helps with the chemo.
Hope you are both doing OK. Bye for now. Elizabeth x
Hi Elizabeth,
You sound like you have been through the wringer! It feels like a bit of a nightmare that you don’t wake up from doesn’t it? I’m not suprised you are freaking about the chemo - I promise that after the first one you will be suprised at how it went. I’m sure you will have bad days but once you have done it and you know what you are in for - its not so awful, not great but doable.
Interesting that you have been offered the chemo regime because you are a private patient. I’m having my treatment here in the public system (no private insurance) and have been so impressed by the speed and efficiency of it all here.
I used to live in Surrey in Ewell and then Cheam. I’ve been here in Australia for nearly 6 years - met an Aussie in London and headed for the sun!
Let us know how you go after your first one won’t you - good luck with the wrinkles - tee hee x
Anne x
Hi Elizabeth and Anne
Thanks, and sorry I haven’t replied sooner, been manic here. One thing that has struck me the last couple of days is the speed of all this -I’ve only been diagnosed 3 weeks and its just been the fastest rollercoaster ride ever since. We’re all experts pretty quick!
I found a lump under my arm when my little boy was 2 weeks old, I was investigating why I didn’t have much milk that side when I found it. Anyway -it took a while to get referred to breast clinic because I got fobbed off with ‘blocked milk ducts’ etc. Had a mammogram which showed another lump in the breast (18mm) and had biopsy of that and lymph glands which both came back positive. Then bone scans and ct scans etc -which were negative.
I was told that it didn’t matter if I had chemo or surgery first and I opted for chemo as I felt it would be easier to cope with such a young baby on chemo and if I have surgery later, he’ll be a lot bigger and easier for other people to look after when I really need the help. Also, the surgery is really scaring me but it sounds like you lot have coped ok with it. I will have a lumpectomy and total axilliary clearance and I’m very worried about the use of my arm afterwards …
I did inject myself with Nulasta and I’m a nurse so thought I’d be ok with injecting but very hard thing to do to yourself!! I can’t tell if I had any side effects as not sure what is what really -felt like I’d been run over for 2-3 days and my head and jaw really hurt and felt sicky, of course. The skin on my face was really really dry but otherwise I was ok.
Anne, can I ask what side effects you got from the Dexamethasone as I’d like to not take that if I can help it.
Well, one down 7 to go …
Speak soon
Hxxx
Hi Hannah
Good to hear from you - I was getting worried. You’re right about how quickly it all happens. I kept saying to people it felt surreal and sometimes I was wondering whether people actually believed I had been into hospital or was even ill. I admire you and Anne coping with children during all of this. I don’t have any so I just have myself to think of.
Regarding surgery, as I mentioned - the first one really was a piece of cake and no problems with my arm. The second (four weeks ago) took a bit longer to recover from but I’m feeling pretty good now and almost have full reach back in my arm and haven’t been taking pain killers for more than two and a half weeks.
Glad also to hear you got your first chemo over and done with. My first is today and while I’m feeling OK about going in and having it done, I’m still worried about how it will affect me. Have decided to have my head shaved so I will be arranging that over the next few days. It will be nice to be back in control!
Talk soon - best wishes
Elizabeth x
Hi Ladies’
You’ll be having your treatment Elizabeth while I’m reading this. You made me laugh about spending 45 pounds on a hair cut. I did exactly the same I got my long hair cut short, really cool style and loved it. One week later it was flat and lanky and 2 weeks after that I shaved the whole lot off!
I agree with you about the surgery. They did the sentinel node biopsy and lumpectomy as day surgery. I went in at 8am and left at around 7pm. It was a full on day and I was very emotional during the biopsy and it was actually a releif to see the anaethetist finally. I had a couple of days feeling sorry for myself but very quickly had good movement and by the time I saw my surgeon for the results a week later I was fine and healing nicely.
Auxillary clearance was an overnight stay I had surgery in the morning, slept all afternoon and then was awake all night. I left the following morning feeling fine but carrying around a drain which was inserted into my armpit to collect fluid. Don’t be in a hurry to get the drain taken out like I was. 6 days after surgery I was back at the surgeons office having 500 mls drained off. Its not much fun having that done - I had to do it 3 times. That was in April, now my scars are nicely healed, I am still numb in the armpit and back of arm but it is all fine, looks normal and unless you looked closely you wouldn’t really notice.
Hannah - the dexamethazone makes me quite hyper and unable to sleep, I also feel a bit aggro with it. I was also given Maxalon and Anzamet and Emend. On the first cycle I took everything cos I didn’t want to be sick. I was very up and down and not in control. When I stopped taking everything - except Emend for Day’s 1-3, I felt heaps better, in control and able to function. I’m not saying that it solved everything but for me - think that I was taking too much. The stematil worked fine when I needed it. My oncologist agreed with me and reduced all prescriptions and gives me the minimum Dex when I have my treatment (intravenously). You have to have some when you have each cycle - its all the oral meds that I don’t have.
Anyway - another long post, hope all is going well
Anne x
Hi Anne, Hannah
I’ve done it!! My first chemo down and I have to say (like so many have said on this site) it was very do-able. The nursing team were fantastic and that made a huge difference. I was also very lucky that the cannula went in first time and the drugs got into my system really quickly (the actual treatment only took an hour when I was expecting four!).
Came home at three waiting for the side effects to kick in but so far nothing (oh, apart from a sort of burning pain in my legs at about 1.00 this morning but that went within an hour. I ought to find out whether this is normal because they don’t mention that as one of the side effects). So it’s now 7.00 in the morning (I always get up this early - 5.30 is my average start!!) and I’m still feeling fine.
I have my Nulasta injection today ( my district nurse will be doing that for me thank goodness) so based on what you’ve both said I will anticipate going down hill a bit but you never know. I also have to start my dexamethasone today. I did ask if I had to take it but the BC nurse said she would recommend it for at least the first cycle. The other sickness tablet is domperidone which I’ve been taking since yesterday. I’m still being positive and tying to think that I will be one of the few who have no side effects - YOU NEVER KNOW!!
Oh, and a tip I picked up on this website was to wear “Travel Bands” on my wrists which help with the sickness by pressing on the pressure points. I’ve had those on since yesterday and as I say - no sickness. I guess we will never know why I’m OK (at the moment) but it can’t do me any harm!
Finally, what’s best is that from now on I can pop in for my blood test the day before chemo, then the following day, chemo day, they will call me at home to tell me the drugs are ready. I can then drive in to hospital - this will cut my treatment time down to two hours which is fantastic. As you’ve mentioned, the Taxol takes three hours but I will still go through the same process so that I only have to be there while they administer the drugs - not waiting around for half a day.
Hope both of you are doing well.
Elizabeth x
Hi Elizabeth
Well done, I am pleased it went smoothly, it sounds like you are off to a good start. You’ll probably start feeling a bit off in the next 24 hours or so but hopefully the meds will help you manage your nausea and you’ll find something that works well for you.
I’m keeping everything crossed for you
Anne x
Hi Anne
You were right!! Was OK until 10.00 last night then a dash to the loo to throw up. A bit of sleepless night last night - just feeling “off”. Then threw up again this morning. I have had some breakfast now though and hopefully I will settle down again. Not sure whether the sickness was part of the chemo or as a result of the Nulasta I had for the fist time yesterday.
Anyway, they say the weather in the South East will be good today (at last) so this will cheer me up and maybe I will be back to normal again today!
Hope you are still doing well.
Elizabeth x