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Neoadjuvant Chemo

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Re: Neoadjuvant Chemo

Oh Lynn,
So sorry to hear that.:( Well you’ve done the dress rehearsal now haven’t you?
I hope THIS wait goes quickly for you. I’m sure you just want to get to the next phase….fingers crossed you have no more false alarms!

Peacock,
Hi! You must be nearly done with your rads marathon by now?….I’ve lost sight of the other threads you normally post on. I’m O.K., not %100 yet! I’ve started an exercise class at my hospital & they are working me hard. The horrible Tax leftovers have been fading, hopefully you will find yours do too. Hair is super slow coming back. I’ll be interested to hear about your recon. Everyone I know has had immediate recon with MX and they all wonder if having rads after the op might affect the look. I hope it all goes well for you.

Take care everyone,

LXXX

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Re: Neoadjuvant Chemo

Hi

Thanks for your message. Unfortunately surgery cancelled again. I got to the hospital and even signed the consent form etc. However they found an infected cyst on my back which was too close to the operation site so they wouldn't operate because there was too great a risk of infection. Now scheduled for two weeks time.

They lanced the cyst and sent me home with antibiotics and also Tamoxifen for two weeks as a precaution.

Hopefully it will be third time lucky.

Lynn

Re: Neoadjuvant Chemo

Hi Everyone
It's taken me some time to find this thread again, but here I am and so pleased to hear from everyone.

To Fiona who is just starting out on Tax, well it seems a distant memory for me now as I finished mid Oct, but I remember the SE well and can only say that you will get through it, you have to don't you.

Lynn good luck with your op, the op for me has been the least bit of a stressed time, it wasn't painful and I have good use of my arm and have since the day of the op. Some movements are "stretchy" especially across the scar, but this is supposed to be stretched I think.

PP, its easy to say it now when you are still going through chemo, but you will get there and the weeks seem to pass so quickly, well they do for me anyway, so good luck with it.

Lomalinda, how are you getting along now? Have you recovered well since op and rads? Recon is on my mind but I know I have to give my body time to recover. The tax seems to have left me with general aches and pains, which I think is quite normal as the Onc/Rads Onc all seem to say "it's the taxotere". Still, it did its job and thats the main thing.

Onwards and upwards, take care all

P xx

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Re: Neoadjuvant Chemo

Hi again,

Lynn,
Just wanted to wish you all the very best for your op on Thursday.
I’m guessing that yours will be similar to mine in that you will be in for just one night.
I can remember just how nerve wracking it was at the time, but it does seem so long ago now; even the wait for the path results. Let us know how you get on when you are feeling up to it. XXX

Fiona,
I somehow missed your post when I was here last. I didn’t mean to ignore you!(…obviously I’m still not getting used to the new look).
Anyway, it sounds like your treatment is going well. Interesting what you say about the cyst. I originally presented with other (healthy? pre-cancerous?) tissue pressing all around my tumour which contributed to the bulk, but it settled back down quite early on. Hope you have an O.K. time with the Tax. Good luck & let us know how you are getting on & what happens at the next stage.

PP,
I know, April must seem like a long time away. But you will get there!
I used to make up month to a page calendars on my computer for my chemo/appt. schedule and avoided looking too far ahead.
I have to say that the day of my surgery, it was a great feeling to know that I had done the hard slog beforehand….
I hope you will keep posting too & let us know your progress.

LXXX

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Re: Neoadjuvant Chemo

Hi Lomalinda
I hope it passes quickly too I have already worked out that the last chemo will be 24 April so anymore delays and it will be May which seems so long away. Perhaps as you say I might get time off for good behaviour!! Good to know your friend has recovered well.

pp
x

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Re: Neoadjuvant Chemo

Hiya

Have had trouble finding things on the site myself so no worries.

I was supposed to have op last Thursday but got a call the day before to say my blood count had dropped so op was cancelled. I'm now having injections of CSF to boost them up and am now going in next Thursday. Yes I am having a guide wire put in - although they don't do it at the hospital, I have to go across the road to the breast clinic so I hope the snow has cleared by then.

Like you my main worry is whether they get clear margins but I'm not thinking of that at the moment, as you say I've had a good reponse so far so hopefully things will go OK. I've also discovered that my surgeon is regarded as one of the best in the area.

Also discovered that my hair is growing back - although not in the right places!

Lynn XX

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Re: Neoadjuvant Chemo

Hi Lynn & PP,

Lynn,
Sorry I didn’t respond to your post from last month! Lost sight of this thread (and others) in the big move. How are you feeling about the surgery? I had an easier recovery than from my SNB. Are you having a guide wire put in on the same day?

The toughest thing for me was worrying if they would get clear margins the first time round. But I did have more of the tumour left after chemo than you, so I’m thinking that you will have an even better chance than I did? I hope it all goes to plan and that your recovery time is short. Let me know how you’re getting on.

Oh, and the Tamoxifen isn’t too bad. Seems to be interrupting my sleep a lot though.
Hopefully it will settle down soon! XXX

Hi PP,
Sorry you had to join us, but we are here for you. That’s great news about what the FEC has done for you so far. Your treatment is similar to my friend ( who I met during chemo) she went from 3 FEC to 3 Docetaxel. She had a terrible time on FEC with nausea, then not so bad on the tax. I was fairly O.K. on the EC (no F) and much worse on tax. So there is just no telling who will react in what way.
My friend had already had a total node clearance and went on to have an MX w/ immediate recon. after chemo, then rads. and she has recovered well.

Try not to get too stressed about the Tax. I would say to have plenty of paracetamol on hand just in case the muscle pains start up (but check with your BCN first). You’re right, there’s nothing much you can do about the blood count thing. I had a bout of that with the EC, but none on Tax. Maybe they will give you some time off for good behaviour & you won’t have to do all 4 rounds? Keep us posted as to how it’s all going. I hope it will all pass quickly for you.

LXX

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Re: Neoadjuvant Chemo

Hi Lynn
Good to know that the TAX shrank the tumour. I have had 2 delays with the chemo because of low white blood count I was told there is nothing I can do to help it. Good luck with your surgery next Thursday

pp
x

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Re: Neoadjuvant Chemo

Hello
I am new here but this is definatley the first time I have seen any really useful Neoadjuvant discussion on any site - so thanks for starting it.

I have just had chemo 5 of 8 (4 x AC now 4 x Tax). The original mri at diagnosis said I had a 4.5/5.0 cm 'lump' but it now appears to be bigger. The good news is that the size has increased because the mid-way mri shows that the lump is only part tumour and the rest of cyst. Of the cyst part is solid and part is liquid. All quite confusing.

Anyway - it seems that the tumorous element is being undermined by the the chemo (not as fast as I'd like of course) and that the waste product from the undermining is 'transferring' into the cyst. Having just had my first taxotere I'm delighted to hear of some of the success people have had with reduction.

Good luck. Thanks for this thread.

F

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Re: Neoadjuvant Chemo

Hi PP

Just wanted to say that my chemo was the same as yours. I thought I was having 6 FEC and it was changed after 4 to then having 4 Tax. Which wasn't what I wanted.

In some ways the Tax was easier as I didn't have any sickness - but I did have very painful joints and neuropathy and felt tired almost all the time. However, the Tax shrank the tumour to almost nothing so it did work. There are some good threads on Tax on the undergoing chemotherapy forum which I found helpful.

I'm now waiting for surgery. I should have gone into hospital yesterday but my blood count dropped so am now booked in for a lumpectomy next Thursday.

Good luck with the Tax

Lynn

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Re: Neoadjuvant Chemo

Hi All
Only just had the courage to register and post this message.

I'm 58 my BC was diagnosed in October 2008 - Triple Negative Invasive Lobular Cancer so far I have had 4 FEC and although my tumour has been responding well was 2cm now 7mm after 3 FEC my onc said he did not know whether to give me 6 FEC as I am responding so well but said sometimes you can develop a resistance to it and after consultation with his colleagues decided I would have 4 FEC and 4 TAX - great as I thought I was only having 6!

I will be having a MX and rads after. Lumpectomy is not an option as MRI scan showed other smaller tumours in breast. Cancer is also in lymph node above my collarbone and told that it is only in 3% of cases at first presentation so this has been of great concern to me as told it cannot be removed.
My first dose of TAX is on 20 Feb I am a bit concerned after reading about some of the side effects on here.

Sorry if I have rambled on a bit just wanted to talk to others who understand.

PP

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Re: Neoadjuvant Chemo

Hiya

My last chemo was on 29 December. Not missing last chemo at all, although still suffering side effects. It was getting bad, neuropathy in feet and feeling very tired all the time. I thought I'd be feeling better by now but having read other threads on this realise I was probably hoping too much.

I'm having about 6 weeks before surgery, mainly because I had a heavy cold and my bloods were still low

I saw the surgeon last week and am having a lumpectomy - although if she doesn't clear everything may be a masectomy later.

I used the cold cap and still have hair, although not very much, it's very thin and short. My eyelashes have gone and eyebrows sort of half there.

Guess I've still got the delights of rads and tattoos to come. but I'm not thinking about that as it won't start until April.

Glad you're OK - how's the tamoxifen?

Lynn XX

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Re: Neoadjuvant Chemo

Hi Lynn!

I was hoping that I would hear from you. I bumped this up as I came across a new thread for chemo before surgery. Have you seen it?

Congrats on finishing chemo. It must have been fairly recently; have they given you more than the usual 4 weeks time off?
That is SUPER news about the shrinkage! Hope you’re not feeling too deprived at missing the last one (ha ha) Seriously though, was it getting really bad? I still have some SE’s hanging on. Hair is all over mousey velvet now, v. slow. Lower eyelashes looking good, top ones & eyebrows are a bit lazy! How is yours?

Rads finished before Xmas. My surgeon had achieved v. clear margins, so 15 only, no boosters. Really wasn’t too bad. Threw a mini strop & refused the tattoos, so I guess that made me feel more in control(!)…. I’ve elected to wait until now to start my Tamoxifen.

Have you had a chance to discuss your surgery yet? Don’t know if I can be of any help…but mine might be similar to what you are having; let me know. Fingers crossed it will all go well!

LXXX

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Re: Neoadjuvant Chemo

Hi Lomalinda

Saw you had bumped this up - was wondering how you had been getting on and was going to search for this thread.. Have you finished rads? Hope it wasn't too bad. Hope your hair is growing back faster too.

I've finished chemo - didn't have the last tax as my oncologist decided that my body couldn't take any more. The good news is that the lump has virtually gone so chemo worked even though hated the side effects.

I'm booked in for a lumpectomy on 5 Feb followed by rads - not sure how long for yet - and then tamoxifen.

All the best

Lynn

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Re: Neoadjuvant Chemo

Bump

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Re: Neoadjuvant Chemo

Hi!

Peacock, so glad that you got through it are back at home. That was a long stay! I hope that the remainder of your recovery goes well & that you get shot of the drain soon! Rest up & get your strength back.

Lynn, really wished I’d had a reflexology option during chemo. I think anything that makes you feel pampered is worth doing. Keep us posted as to how you’re getting on.

L
XXX

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Re: Neoadjuvant Chemo

Hiya

Just a quick note - reflexology was wonderful and relaxing, not sure whether it does any good medically but I slept better after it than I have for weeks. Next time am going to have a session just before chemo to see if it makes a difference.

Lynn

Re: Neoadjuvant Chemo

Hi everyone

Thank you all for your good wishes, I am oleased to say I am home after 8 days in hospital. The reason for the long stay is because I have quite bad bruising all the way down my arm until past the elbow, around my armpit area and am still draining rather rapidly, I've come home with my drain attached to a plastic bottle which now has to be checked each day by a nurse.

Anyway, keeping this short as I've been told not to use my arm except for eating and the one exercise I've been told to do.

Hope you are all doing well and I will come back asap.

xx P xx

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Re: Neoadjuvant Chemo

Hi again,

Hey Lynn,
How are you getting on? Have you seen the reflexologist yet?
I hope the Tax hasn’t been punishing you.

Nice to hear from you, Webmum.
Thanks for the K167 info. They don’t seem to dish this out at my hospital, so I might ask about it when I have my follow up meeting with my onc. I’m sorry to hear that you’ve had those pregnancy issues to deal with. Things are not great for me in that dept. but that is another story,& perhaps for a whole other forum!

I had my rads planning yesterday. It turns out that due to the stellar work of the surgeon, I will be having the three weeks, but no boosters! I also had a brief chat with the rads onc about the my downgrading from Grade 3 to 2. Seems that it could be down to either the efficacy of the chemo, or that I was more of a grade 2 girl all along and that my original core biopsy just picked up some higher grade cells. Guess I’ll never know! So it looks like I’ll be finished before Xmas if all goes to plan. Then on to the dreaded Tamoxifen…. plus a patient wait to see if I’ll want or need any recon…oh, and hair is showing some small signs of activity (small prayer just said for some more coverage!)

Take care everyone.

P.S. Thinking about you, Peacock xxx

Lomalinda

XXX

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Re: Neoadjuvant Chemo

Hello Lomalinda,

sorry if I haven't replied to your questions, I just did not notice this thread any longer!
I hope you found your answers, but if you didn't KI67 (sometimes called MIB1) is a measure of how actively cancer cells are reproducing themselves ie how aggressive the cancer is. in my case they were literally multiplying before our eyes, my lump went froma peasized one to 5cm in 5 months! I have seen it grow under my eyes........

Surgery after a complete response makes sense as they still want to check cells for any remaining cancer, a complete response is only really pronounced after a pathology report as scans, mris etc do not see small tumours, but a pathological exam will detect everything. They still took out a lump from my previous tumour site just to be safer.

Someone asked about marker clips, these are used to mark the tumour so in case of complete response the surgeon knows where to go, this is (I have been told) usually done during initial biopsy, but it wans't in my case as I was kind of "rushed in" and got there late, doct performing it quite pissed off and I think she didn't believe at that stage that I'd need it, actually at the time all the doctrs were expecting me to have methastasis (spelling?) already.......turned out a completely different story, luckily!

I have just finished herceptin and haven't been to hispital for 3 weeks now, due for a check up January with bloods and abdominal scan, mammogram in march.

At my last appointment I asked oncologists how my response to chemo affected my diagnosis, and they said research in this field is still quite knew, and followup doesn't extend much but results are very encouraging and having a complete response puts in a better position than someone having a better initial diagnosis who still had some residual cancer at the end of chemo. That was very reassuring, but when I asked when could I thin about having another baby (had to have a termination in early stages as found out I was pregnant after been diagnosed) they tried to discouraged me as risk of recurrence is still present (they didn;t quantify but her face was saying so much more...) and she'd want me to wait ideally 5 years but better not. So that was quite a blow, and the reassurance kind of went out of the window, they scared me alright and now I think about it a lot, but it's still early days and hopefully time will get make me feel safer.

Peacock, I beleive you ahve your operation today I hope it goes well and look forward to hearing from you again. I am thinking of you!

Lomalinda do you know when your radiotherapy is starting? I had 6 weeks of it, and the first 4 were ok, but then burned badly around nipple area and skin came off compeltely, took a few weeks to heal, but thankfully it's all in the past now....The funny thing is that my radiated breast is now bigger than the 'normal' breast even though I had a lump removed. I was told it could happen with radiotherapy, I wonder if it's a longterm thing, forgot to ask about that!

well best of luck to all of you who are still in the midst of it, all I can say to you is that it will end, promise!
take care

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Re: Neoadjuvant Chemo

Hiya

Chemo not too bad. Very tired as not been sleeping so slept snuggled up in blanket and hot pads while waiting for cold cap to come off. No side effects yet apart from insommnia and hot sweats every hour or so. I've been recommended acupuncture for sweats but not sure I could cope with the needles - had far too many of them!

I'll let you know about reflexology - the breast care nurses and my oncologist recommended it. Apoointments next week and after that I hope to have it before chemo and before the line goes in - the reflexologist comes to the hospital.

I'm sure your hair will start growing now the chemo's over - mines been thinning even with the cold cap and it doesn't grow. I've also managed to hold on to mye eyebrows and lashes - though I don't think for muxh longer.

All the best

Lynn

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Re: Neoadjuvant Chemo

Hi Ladies,

So nice to hear from you!

Peacock, I was hoping you would post; I didn’t get a chance to add to the thread you started about your surgery date. I hope the Tax has been working hard for you too. You’ve had such a rough ride with side effects! Wishing you all the best for tomorrow & I hope your recovery goes smoothly.

Hi Rebecca, you’ve done really well! You must have finished treatment fairly recently? I hope that things in your life are now getting back into balance.....

Hi Lynn,
How did it go yesterday?
My chemo was similar to yours, no F in the EC though. Sorry to hear that you have been having a hard time with the FEC & that your time with chemo has been extended. Maybe the changeover will be a bit better. I think it’s quite common for them to switch drugs halfway, to give it a bit of a surprise! Interested to hear about the reflexology; I found acupuncture helped me with the Tax side effects.

At this point I’m feeling relieved but cautious! I do need to have a good chat with my onc & I still don’t know when my rads will be starting. Oh, and I could do with a bit more hair right now!....

Take care,
Lomalinda

XXX

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Re: Neoadjuvant Chemo

Hi Lomalinda

Glad your results are good - you must be pleased. I'm still having chemo. Just finished 4 FEC and although lump has shrunk to about 2cm my oncologist has now changed me to 4 sessions of Tax which I'm not looking forward to - mainly as I thought I only had two sessions of chemo to go and I always feel really ill during chemo sessions. However if its working I can put up with it. I'm also going to have reflexology the week after chemo and after that probably on before each session to see if it helps.

Still carrying on with the cold cap and still have hair - although has thinned - eyebrowws and eyelashes. My anti sickness drugs were changed and no vomiting on last chemo sesion. Next one on Monday.

Hope the radiotherapy goes well. Take care

Lynn

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Re: Neoadjuvant Chemo

Hi ladies,

I've only just seen this thread, but will add my experience. I was dx with grade 3, stage 3 (13 x 10cm) IBC in Feb 08. Had 2 FEC, 4 Tax, Mast & 20 rads.

Are you having to make a decision about which type of surgery you will have?
- different types of surgery were never an option, neoadjuvant was because of IBC & size of tumour.

And how do you feel about the long wait before surgery?
- I hated it, loathed it, wanted the tumour gone, and the waiting was the hardest

Has the chemo been successful? & what happens if it doesn’t quite go to plan?
- 2 x FEC with tumour still growing. 1 x Tax, then 3 x Tax + HER made tumour shrink

Any thoughts on specifics like interim ultrasounds, marker clips, etc.?
- only interim assessment was a very crude "feel" byt the surgeon, plus watching my rising CA125

Has anyone achieved a ‘complete response’?
YES! all of the IBC had gone, and my prebiosly enlarged lymph glands were clear, all that remained was extensive grade 3 DCIS

Hope that helps, Rebecca

Re: Neoadjuvant Chemo

Hello Lomalinda

I am so pleased you had good results, you must be feeling very well about it too? I would be interested to know whether your question about chemo v prognosis so if you hear from the Onc about this please let me know.

I will be having my mx on Weds this week, I feel quite good about it and will be glad to have it over and done with so I can move on to the next stage. I am starting to research about rads now to prepare myself. I will need rads for 5 weeks I am told. My prognosis wasn't good in the beginning with a grade 3 tumour which has turned out to be IBC so I hope my results will be as good as yours Lomalinda.

Anyway, keep up the good work and keep letting us know how you get on, I wish you all the best.

Take care

xxxxx

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Re: Neoadjuvant Chemo

Hi Everyone,

Well, I am now post surgery and just had my path results yesterday, so I thought that I would resurrect this thread…

Finished chemo on the 15 Sept., then had imaging: mammo, ultrasound & MRI which all looked promising. I had a segmental mast. on Oct. 20, and it’s good news at this point: I have clear margins!

The size of my tumour wasn’t communicated to me properly for a long while (!) but anyway, the chemo took it down from roughly 3cm down to about 1cm. It has also been downgraded from grade 3 to grade 2. So I will now move on to radiotherapy. It looks like 3 weeks + boosters. I am so relieved not to have to go back for more surgery as it looks as though my surgeon has done a wonderful job. Stitches barely visible and I seem to have retained my shape; but swelling needs to resolve itself, so don’t yet know about size. I still need to an in depth chat with my onc about all this though.

So how is everyone else who posted here doing? Please get in touch if you want; would love to hear from you. Been seeing some of you around, but it would be good to compare notes eventually. Does one’s response to chemo affect your original prognosis is what I’m wondering now?…

All the very best to everyone,

Lomalinda

XXX

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Re: Neoadjuvant Chemo

OMG…..
Ha! My cover has been blown!

Seriously Rebecca, you have been such a great help to me in a way that no one else I know can be. An Inspiration!

Speak soon as we planned….

Lomalinda

Many XXX’s

Re: Neoadjuvant Chemo

Hi Lomalinda

Just to say that I will be thinking about you tomorrow, you have done so well.

Becks (aka Rebecca!)

xxxxx

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Re: Neoadjuvant Chemo

Hi Lynn,

Yeah, the cold cap is a big effort if you don’t get the results you hope for.
Have to say that I’ve about had it with the headscarf thing… I had a strip of fringe which I used tuck in across the front, but I just can’t be bothered anymore! I bought a nice monofilament wig ages ago & I think I might start wearing it now, but it’ll need trip to the hairdresser’s first for fine tuning!

Hi Chris!,

Nice to hear from you. I love your river analogy; mine was 8 beads on a bar sliding across, one treatment at a time. Though the way I feel now it’s more like an 8 round boxing match! It’s good to have something to visualise, especially when you’re waiting around on the ward.

I hope the switch to TAX gets better results…. One of my oncs said that sometimes it’s the later rounds that make more progress. On the 25th you’ll be halfway through!

My last one is tomorrow, I am so looking forward to it I may not be able to sleep tonight. No wait, that’ll be the Dexamethazone kicking in!…..

Take care,

Lomalinda

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Re: Neoadjuvant Chemo

Hi Lomalinda

Am thinking about giving up cold cap - it is uncomfortable at first and adds so much time to treatment and if its not working its not worth it. I got given a wig brochure this week so might have a look into that. Got another week or so to decide. Think I need to start anti sickness tablets on the day which might help.

Take care

Lynn

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Re: Neoadjuvant Chemo

Hi everyone,

was diag, in june 08, am 52, inv. duct. grade 3, 4 cms,
am on 4 tac, 4 tax.. op, rads........
my 4th tac is on 25th sept.
b4 3rd tac lump measured (with pinchers) ouch, and not really seems to be shrinking
therefore onc will check again b4 4th and maybe start me on tax earlier
I haavnt been brilliant on tac, esp. the 1st week after each, difficult to eat, drink and spent much of it in bed but pick up in week 2/3 ready to be got at again!!!
I have read many posts on tax and if I'm honest am quite 'scared' about its side effects. Yes we are all different and maybe it wont be too bad, time only will tell. I dont know if the onc starts tax earlier whether I will just have the 4 or 5 to make up for 1 less tac.
I have lost my hair mostly, but unlike some I didnt shave it off so have a 2 inch downy covering!!! I have an nhs wig that doesnt look too bad but I save it for when I have to go out!!! Cried when hair was falling like autumn leaves, but hey, spring always follows..just got to get through this damn winter!!!
It takes a few weeks to get used to diag. and accept it. I feel like Im floating down river, stopping off every 3 weeks for treatment, then floating down for next one, soon I will reach the end of the bank where I dont have to stop off anymore and my... wont that sunshine feel so good (in the shade of course...)

take care all,
hugs and heartfelt good wishes every step of the way,
Chris x

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Re: Neoadjuvant Chemo

Hi everyone,

was diag, in june 08, am 52, inv. duct. grade 3, 4 cms,
am on 4 tac, 4 tax.. op, rads........
my 4th tac is on 25th sept.
b4 3rd tac lump measured (with pinchers) ouch, and not really seems to be shrinking
therefore onc will check again b4 4th and maybe start me on tax earlier
I haavnt been brilliant on tac, esp. the 1st week after each, difficult to eat, drink and spent much of it in bed but pick up in week 2/3 ready to be got at again!!!
I have read many posts on tax and if I'm honest am quite 'scared' about its side effects. Yes we are all different and maybe it wont be too bad, time only will tell. I dont know if the onc starts tax earlier whether I will just have the 4 or 5 to make up for 1 less tac.
I have lost my hair mostly, but unlike some I didnt shave it off so have a 2 inch downy covering!!! I have an nhs wig that doesnt look too bad but I save it for when I have to go out!!! Cried when hair was falling like autumn leaves, but hey, spring always follows..just got to get through this damn winter!!!
It takes a few weeks to get used to diag. and accept it. I feel like Im floating down river, stopping off every 3 weeks for treatment, then floating down for next one, soon I will reach the end of the bank where I dont have to stop off anymore and my... wont that sunshine feel so good (in the shade of course...)

take care all,
hugs and heartfelt good wishes every step of the way,
Chris x

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Re: Neoadjuvant Chemo

Hi Lynn,

So sorry to hear that you had a bad time of it on this round. I hope that they will sort something out so that you don’t have to go on like that. My chemo pal had some big oral capsules to take on the day & it did help a lot. Are you going to continue with the cold cap? I was too chicken to try it.

Dawn,

Hi. I was hoping to get info on this K167 thing when I went to my clinic yesterday.
But as they forgot for the second time to have my full path report for me, I forgot to ask about it!

Best to everyone,

Lomalinda

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Re: Neoadjuvant Chemo

Hi Lomalinda

Thanks for your good wishes - unfortunately was really sick after this bout and didn't feel well at all. hopefully they can sort the drugs out for next time. Also despite using a cold cap my hair seems to be coming out more than I thought so don't know whether to continue.

Godd luck with your final rounds.

Lynn

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Re: Neoadjuvant Chemo

Hi,
Yes my hair started to grow back on taxotere, I was abit worried maybe it was not working but they said and on here it seems that quite a few peoples hair starts to grow back on the tax,but I lost my eyebrows and eyelashes on the tax and not on the EC, it all so different for different people.
Sorry it was virtually just coil that they removed and a slight bit left so not much to measure really. So def a good result for me.
I am interested in K167 is too so awaiting the reply, I havent googled article that was recommended but will do soon.

Hope next chemo goes ok you are nearly there!!!
Take care
Dawn X

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Re: Neoadjuvant Chemo

Hi Webmum,

Thanks for the article!

Now, I hadn't seen that one before and I've been looking! There are lots of links on that page to others too....

Will be making large pot of tea before I start wading in to them all!

2 questions for you:

Surgery after complete response: What are they actually removing (aside from the clip!) when there is a complete response?

What is the K167 you refer to? I've only just asked for my pathology report, don't know why I didn't do so before....

Thanks for the pep talk too. This is the point where it seems a bit endless!

DawnCr

Hi! Thanks to you too!

Interesting that you had a v. similar size and grade to mine and what you manage to achieve.
Is that 0.6mm? If so, that's tiny!

Sorry to hear that you had such a tussle after the first op; my best chemo pal had similar seroma / infection problems and it is NO fun. You sound very positive now though, like everyone here.

Same chemo as me too...... Did your hair come back before you finished the TAX? I have a baby bird look at the moment!

Best wishes to all, esp. Iah60 with your latest FEC.

Lomalinda

XXX

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Re: Neoadjuvant Chemo

Hi Lomalinda,
I am 48 now I was dx in July 07 and had a 1.7 grade 3 tumour, I had option for chemo first and did research, cochrane institute had good summary of research that good for under 50's and being used more and more. I decided as a grade 3 Id rather get the chemo in me quickly. I had 4 EC and 4 Tax it srunk to 0.6 virtually had gone, following those I had lumpectomy(WLE) and then 2nd op for wider margins and full lymph clearance, 1/16 were affected. Unfortunately I developed a seroma and had to go and have it drained twice a week then I got an infection so had a 3rd op, to clear infection and seroma. This was successful. I was so pleased to have chemo first because If I had had ops first it could of been 3 months until I had chemo. I had a clear mammogram in July then I had rads 25 and 5 boosters and am now on Tamoxifen for 5 years.
I am still abit tired from all treatment so am not back at work yet, but am feeling much more like me now.
I have weird new hair, it is very curly and a different colour, but great to have hair again.

Ask anything you want to know, if I can help I will,
Take care
Dawn X

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Re: Neoadjuvant Chemo

Hello Lomalinda

I thought you might find this article interesting: google this title : Prognostic Value of Initial Clinical Disease Stage After Achieving Pathological Complete Response. You'll find plenty of info there.

It is very encouraging reading, especially after a not so good initial diagnosis!

I wish the best of luck with your next chemo and hope you achieve great results at the end. It's a cliche, but there IS light at the end of the tunnel and you will get there.

Take care all of you!

Webmum

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Re: Neoadjuvant Chemo

Hi Ladies,

It's a shame we have to meet under these circumstances,
but I have to say that I feel a renewed strength and optimism hearing from everyone here. This is especially good as I steel myself for my last chemo - which I will be having mid September.

Iah60
Best wishes for Monday. That's great that they have put your marker in nice and early.

Sunny1
Looks like you might get some FEC tips here. I'm going to do a separate post for your chemo questions . Probably better if I post on your original thread in the chemo section.

Peacock
As you might have gathered from Scotta's post, a marker clip is a little (titanium?) tag which is inserted whilst aided by ultrasound to mark where the tumour is. This helps in planning surgery if the tumour size and location is the main concern of the surgery.

Imi99

(clinical) Complete response is when the tumour is no longer palpable. Webmum is obviously the poster child for this one! I think it is: no response, partial response, or complete response. This obviously has implications for long term prognosis. Anyone have data on this?

Scotta, Shazza, and Webmum,

Thank you so much for sharing your experiences. I was really hoping to hear from ladies who are further along the way. It's great to finally be able to compare treatment notes with others!

I can remember being so shocked when they told me my order of treatment, but once I calmed down and thought it through, it really made sense and I could see the benefits. I think we are all very fortunate!

The thing I'm finding hard at the moment is that until I have the post chemo MRI, I can't discuss my surgery plans... I am hoping for a lumpectomy, though they haven't as yet used this exact word with me, just WLE.
I am trying to keep positive and realistic at the same time. Scotta's post is especially interesting since there is very little "real life" info out there about lumpectomies.

Well, I promise to be a bit more brief in the future, but it was just so good to hear from you all!

Lomalinda

XXX

Here's my profile:

I'm 45
dx: March 2008
Type: IDC, Grade 3, ER+ PR+ HR2 -
Size: 1.9cm , appears to have reduced to 8 x 9 mm after 4 chemos.
Sentinel Node Biopsy, nodes clear
Chemo: 4 x Epirubicin, 4 x Docetaxel
Planned: Breast conserving surgery, Rads. (3 weeks?), Tamoxifen 5 yrs.

Other things:

MRI scan before SNB
2 ultrasounds (monitoring),
Marker clip inserted on completion of Epirubicin cycles (1/2 way).
Planned: MRI before surgery.

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Re: Neoadjuvant Chemo

Hello Lomalinda

I thought I'd add my experience as well:
I was diagnosed about a year ago: IDC grade 3, 4cm. Lmphnodes not checked but a 2cm mass was obvious at scan and PET and clearly palpable.

I was immediately advised to have chemo first for the 3 reasons listed by others:
check efficacy of chemo
no waiting around for surgery and recovery period
reduce lump.

I was always checked manually but it was obvious it was working. I had 12 weekly Taxol + 4 FEC. Throughout I also had weekly herceptin and lapatinib in tablets. I was in a clinical study. By the end of treatment the umour wasn't palpable anymore and scan/mammogram/MRI were all negaive.
I finally had a lumpectomy with Sentinel Lymphnode biopsy (they took 4 out), pathology report of lymphnodes and lump all negative. I have had a complete response. I then had 6 weeks radiotherapy, which I finished a monh ago.

My cancer was very aggressive with a KI67 of 90%(anything over 20 is considered high)! This probably explains why it responded so well, as my oncologis had said that the more aggressive cancers tend to respond better to chemo.

I am very happy that I could see the positive effects of chemo and know for sure that all the pain had not been for nothing. I know I have been extremely lucky with the results and I'm jus so glad I was in a position to know for sure that there was nothing left.

I am finishing my last few herceptins and am looking forward to having a long break from hospital afer that!

Bes of luck to all of you who are still having treatment, I wich everyone could have the same outcome as me!

take care

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Re: Neoadjuvant Chemo

I had chemo first with a view to saving my breast (I was 34 at dx last Nov) which was one of my priorities when I was first dx. I think there are pros and cons of both options.

For me, I found the chemo more bearable because I could physically feel the changes to the tumour so I knew it was working so it seemed worth putting myself through it. Unfortunately, I still had to have a mastectomy as my tumour fragmented (calcifications) rather than shrunk in one piece.

When I got my results, I was glad I was mentally prepared (as far as you can be) for a mx as there was a second lump which was DCIS, approx 10cm - I assume if it had only been a lumpectomy, they may have found this lump and had to change to plan B anyway. I had no nodes involved which is probably because the chemo had killed off any strays - another plus side to chemo first that it gets to work on your whole body straight away.

I also had 15 rads and am now half way through Herceptin.

My thoughts are that the oncologists are the experts and if neo-adjuvant chemo is their recommendation, they know more than I do, so go with it. Hope this helps.

Good luck all.

Re: Neoadjuvant Chemo

Hello Lomalinda and all

I was diagnosed early in June, with an 8cm tumour which was aggessive, grade 3. I was told that chemo first was the best option to allow shrinkage of the tumour and because surgery at that time wasn't a good choice. My nodes were not checked then either, so I don't know whether any are affected.

So far I have had 4 / 8 Taxotere and 2 of herceptin as my cancer is HER+. I was told that I would still need a mastectomy because of the calcification in the breast, even after chemo. Following the 3rd course of chemo, my tumour had shrunk by half although I am not sure how they could really tell as the Onc only used some sort of ruler to measure it. My blood tumour marker is 23, but again as this was not checked in the beginning with diagnosis I don't know what it was.

I will need rads after the mastectomy and will continue with Herceptin for a year.

I am having my treatment in France, and am currently changing treatment to a centre of excellence which is further away to travel to, but is meant to be one of the best hospitals in my part of France for treatment of cancer. I thought I was the only one having neoadjuvant chemo, until I started to research on this site and ask advice.

Can I just ask what a marker clip is please?

Good luck to everyone xx

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Re: Neoadjuvant Chemo

Hi Lomalinda

Thanks for pointing me this way. I am just starting the journey with 1st chemo (1 of 6 FEC) on 17 Sept and believe the chemo was offered to me first also for breast conserving surgery. I had noticed that neoadjuvant chemo is relatively uncommon. Could it be that a lot of women choose surgery first because they don't like the thought of the tumour still being there? I know a friend who elected to have a mastectomy even though she didn't necessarily need to.

I haven't even thought about the type of surgery I will have due to the unknown outcome of chemo. I am fully expecting there to be changes to my treatment as time goes on. I'm sure it will be a rollercoaster ride.

What type of chemo are you having? Have you suffered any hair loss? Has the chemo made any difference to the size? Also, are you deciding on what type of surgery to have and if so what are your options?

Apologies for all the questions.

Sunny1
xx

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Re: Neoadjuvant Chemo

Hi Ladies,

I'm also a neoadjuvant chemo gal, but am on the last leg of treatment, now in third week of five weeks rads.

I was dx jan 08 at age 37, did 6 AC chemo Feb - May, surgery July and now rads. I had 5cm lump, grade 3, triple neg. Was given choice of chemo first or not, but they'd planned treatments assuming I chose chemo first, and onc said it was no contest after decision made! Apart from possibility of less surgery, they also indicated you could see whether chemo is working or not, which you don't see as well if surgery first. My initial concern was waiting so long to get cancer out of me, but BC nurse pointed out that treatment or attack on Big C started when I got first chemo, not when it was surgically removed. So that reassured me, and actually the time to get my head around everything helped before getting surgery.

I had SNB with 1/2 nodes positive in Feb. Then chemo; was told if AC not effective would change to 4AC, 4Tax, but halfway through lump had reduced to just over 2cm. so carried on with AC. Had several u/s which showed it was reducing, and marker inserted before surgery as remaining lump a funny shape. Not a complete response, and path report showed still 2.5cm cancer (even though latest u/s showed circa 1.5cm), but downgraded to grade 2 (poss as a result of chemo) and no further nodes affected.

Reduction in size of lump meant that I avoided mastectomy which would have been necessary had I had surgery first, but still had choice at surgery - either normal lumpectomy, but due to size of removal, would be left with large indentation; or removal and "reshape" with other breast reduction. I chose the latter after much deliberation, and am pleased with outcome. Surgery wasn't as bad as expected and actually felt quite good about it as I'd improved in energy etc being 5-6 wks post chemo! Rads also ok so far, although I'm lucky in I work near hospital so no big travelling time for me.

Think that answers all the questions, but if you have any others, just ask!! Good luck with it all folks; it is a slog and you'll have some down days, but take it a step at a time and you will get there! Look after yourselves,
Ax

Re: Neoadjuvant Chemo

Hi Both

I'm also having chemo before surgery although I'm well behind Lomalinda - had FEC no.3 (out of 6) yesterday. After surgery I've been told I'll also have radiotherapy followed by Tamoxifen for 5yrs. The impression I've had is that this is more common for younger women with bigger tumours but I could be wrong. I'm 40 and lump was 5 x 2.5cm, grade 2 and hormone receptive.

I had a sentinal node biopsy prior to chemo with a 3/9 node result but this didn't make any difference to their decision.

I'm quite happy to have the chemo first as I would prefer to have a lumpectomy rather than mascetomy if it shrinks enough. I've an ultraound booked for the 18th Sept to see how it's going but I did have the lump manually measured with calipers just before FEC no.2 and it seemed to have shrink quite abit (although I wasn't that convinced with the accuracy of this method!!)

I've not heard the term "complete response" before - what exactly does it refer to?

I too would be interested to know of anyone's experiences when further down the road and what happens if the chemo is not effective.

Best Wishes
Sarah

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Re: Neoadjuvant Chemo

Hi Lornalinda

I'm having chemo before surgery. Like you everyone I've talked to seems to have had surgery first and then chemo etc. I think a lot depends on the surgeon. The way it has been explained to me is that as I come under the younger category it means when I have surgery the tumour will have shrunk so there won't be so much of the breast to cut away. Hopefully I will just have a lumpectomy. I also had a node biopsy before chemo started.

I don't worry about the wait for surgery but do wonder what happens if the chemo doesn't work.

I've just completed my first cycle of FEC - 5 more to go and had a marker clip put in today. Second cycle starts on Monday.

I've found these forums very informative and helpful - especially hearing from people like yourself who have been through the same experiences

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Neoadjuvant Chemo

Hi Everyone,

This site has been such a help to me since I was diagnosed last March.
So many wise, articulate and funny ladies out there!

I’m hoping to start a thread for anyone who has a treatment plan which includes chemo before surgery.

I have seen a few postings on this site on the subject, and although I’m happy having this treatment & feel fairly well informed, I am always wondering why it seems to me to be relatively uncommon. Anyone else out there?

Are you having to make a decision about which type of surgery you will have?
And how do you feel about the long wait before surgery?
Has the chemo been successful? & what happens if it doesn’t quite go to plan?
Any thoughts on specifics like interim ultrasounds, marker clips, etc.?
Has anyone achieved a ‘complete response’?

The aim of the chemo in my case is to allow me to have breast conserving surgery.
Rads & hormone therapy to follow.

I am now nearing the end of 6 months / 8 rounds of chemo (finally!) and would love to be of help to anyone who is getting started, or to hear from anyone who is further along the way…

Best wishes to all,

Lomalinda