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
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
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
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
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
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
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
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
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
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
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
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
Bump
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
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
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
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
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
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
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