I am really very in doubt as maybe i made the mistake of having a second opinion and becoming even more confused.
I was diagnosed with BC back in April, when Oncologist prescribed 6 x FEC 75. After the treatment finished and all the tests done, they were convinced that the chemotherapy worked as they could not see a trace of the tumor. But when Surgeon opened, he encountered a completely different situation. The tumor has dissipated, like a cheese on a grater… So what was supposed to be a lumpectomy, ended up in a mastectomy after 2 operation. The chemotherapy stage was on the NHS at my local hospital (which was very good by the way), the surgery privately in the Royal Marsden. My surgeon asked me to see a different oncologist privately who advised me that the next step would be radio. I was not very convinced as the treatment I had privately was really appauling and I went back to my NHS oncologist for a second opinion and she now says that she would advise me to take TAX as she feels that FEC did not work as desired and we should give a goal at having 4 x TAX.
I got really confused now as the private doctor did not tell me anything about having chemo again.
Any help on the subject would be much appreciated.
Cant really answer such an important question for you. Could you have the tax 1st and then rads afterwards. I would take all the treatement offered to get rid of bc. No wonder you are confused with such conflicting info.
There is a no. to ring on this site to talk to people who can advise you in a professional way, who will understand more about your dilema the helpline no, is 0808 800 6000
Cant help much as mine was pretty straightforward 4xFEC and 4xTaxotere.I do know that tax is regarded as the current ‘gold standard’ for primary bcAre you also hormone or Her2 positive?It sounds as if they want to be certain that you have had the best available.I have never heard of fec having that effect.It sounds alarming and I do think you should talk to your NHS onc and have someone with you.Take a list of questions.I would always ask what advice she would give her sister or mother in your position.What woould she do herself?When I talked it over with my onc and asked what he would advise his wife he said he would want her to have everything available at the primary stage.
Good Luck,do let us know how you get on.
Love Vx
I had a similar experience to you: 6xFEC with the ultrasounds looking promising. Then lumpectomy followed by mastectomy because there were cancerous and pre-cancerous cells more widely spread than we had thought.
After surgery, I was offered Taxotere because the FEC had clearly not worked as well as hoped and the oncologist said that my age (41) warranted aggressive treatment to really make sure any stray cancerous cells were “zapped”. While I was making up my mind, she arranged some other scans (bone, CT and PET) which showed up a hot spot on a lymph node, so an option became a strong recommendation. I’ve just finished 6 cycles of Tax and started rads.
I don’t know how typical this is. The Tax was hard work, but the latest CT is looking good and I do feel now as though I have really given this all my best shot. I’ve said elsewhere on these boards that I don’t believe that the oncologists offer expensive and unpleasant drugs to you if they don’t believe they will benefit you. I think it be worth discussing this again with the NHS oncologist, who you seem to have confidence in - get her to tell you exactly what the purpose of the Tax is for you as well as any possible alternatives, if there are any. That might help you to come to a decision you feel reasonably happy with.
If I were in your position I would go with the Taxotere. You have to take every possible opportunity to get rid of any malignancy that MAY still be in your body somewhere, and if the FEC hasn’t worked that well on the primary tumour, then neither would it have worked very well on any escaped cells.
It is possible to have radiotherapy in between chemos, and this is a common approach in Scotland where a friend of mine had her treatment. She had 4 FEC followed by her radiotherapy then 4 TAX.
My own experience was axillary clearance, mastectomy 4 FEC and 4 TAX followed by radiotherapy. The Tax was hard going, but at least I know I have done everything possible to reduce the chance of recurrence. I am now having Herceptin, and if you are HER-2 positive, I believe Taxotere is usually given alongside Herceptin.
I was originally scheduled to have 6 FEC but I have had such a terrible time with it (vomiting and nausea - lost 2 stone in weight etc.) that the onc has decided to put me onto Taxotere for the last 3. Apparently the nausea isn’t quite so bad with Taxotere.
I am quite surprised he is throwing the “big boy” at me given its cost - and I am a little bit terrified of its side effects. But it is the best there is. It works in a totally different way to FEC (which attacks DNA). Taxotere stiffens the “skeleton” of the cancer cell making it impossible for it to divide and so it dies.
If I were you I would listen to the NHS onc - they wouldn’t be offering it to you unless they thought it could have significant effect.
Good luck. It is a really tough decision.
Go for the Taxotere.I had 4xFEC,4xTax and sailed through it(apart from my first FEC) I did get increasingly tired on the tax but could still carry on more or less as normal.I’d take everything they could throw at me to make sure those cancer cells got a damn good hammering!
Thanks everyone for such helpful advices, from my heart!
I have today discussed with my NHS oncologist and she was fantastic and she has actually explained everything I needed to know. She has actually said that she cared about me as a patient and that is the reason why she strongly recommended TAX. She also said that this is what she would do if it was her. She explained that they needed to make sure that no cancerous cells were lingering around as the FEC clearly did not work. I feel now a lot of respect for her and at the same time I am really disappointed with the private care I have received. I have acually written a formal letter of complaint to them. I am switching back from private to the NHS at my local hospital, that by experience, they were much more human. Surprising, isn’t it? I will carry on having check ups privately with my surgeon, but the rest of my treatment will be with the NHS.
My first TAX will be 7th November and before that, she has already scheduled CT, Bone Scan, ECG, etc and I will also have a Hickman line put in as I have no veins left! If anyone reading this has had any experience with Hickman Lines I would be very grateful to hear any comments.
Once again, many thanks to the advices and what a wonderful website this is, with wonderful people around!
Hi, I am on Taxotere - having 3rd next week. I have found it ok apart from aches and tiredness.
I have a Groshong Line - which is similar to a Hickman and it works very well, no wories about finding veins. A bit sore when first fitted, but fine now.
Yes, I asked for a Hickman line for the course of Tax and it has been no problem. Just need to take a little care in the shower and when changing, and the hospital has given me all the gear so that I can flush it once a week. After it had been put in, for about a day my shoulder ached, as though I’d been shunted in a rugby scrum (as if I’d know!).
Made all the difference to me. No more worrying about finding a vein, just rolled up for bloods or chemo and was plugged in. I need to arrange to have it removed now that I have had all 6 Tax, not looking forward to going back to needles!
Hi, my Hickman line was an absolute godsend. I honestly am not sure I’d have got through all this without it. My veins collapsed, partly due to callous treatment by staff at an NHS hospital, and it was a real struggle to get any bloods out of me. I got the line in the morning and chemo through it in the afternoon. I had absolutely no problems with it. I was squeamish about flushing it, but once I’d done it once it was a walk in the park and only took a few minutes.
Go for it - it really makes life much easier (even if you do have to wear a bra in bed to give the line a “home”!)
Thanks everybody, I had my Hickman line put in today. It did hurt a bit (still hurting actually) where they stitched up, but I am already feeling quite relieved that I will not be needled several times before someone finds a vein. I wish I had done this before actually. Friday I start my 4 cycles of TAX. Not looking forward to that…
xx
Well done! Your steroids will soon sort out the aching and you’ll get used to the line quickly enough. Tax of course is another matter! I found that really tough. My Hickman is coming out Monday - goodbye to an old friend, and hello to needles again, but hopefully not often and they have recovered somewhat. One thing that can’t go through the Hickman line is contrast for CT scans, but the radiographers found veins in my hand OK.
I’ve been having taxotere and have been using a scalp cooler to keep my hair. I’ve had 4 out of 6 so far, and so far … it’s working! Horrible while you’re going through it, but well worth it for me, as I was told I’d lose my hair otherwise. Is this an option for you for tomorrow? If it is, make sure they put the cap on you for a full 45 mins prior to the chemo starting (the guidelines say 20-45 mins, but I think what’s important is how cold your head is prior to chemo), then for the duration of the chemo, then for two hours afterwards.
It all went ok today, but I did not ask for the cold cap. I just can’t face feeling any more pain tahn I have to. I was without hair before, it does not really bother me now. I prefer as little pain and discomfort as possible at the present moment. I was also lucky to convince my consultant to give me some sleeping pills as I am getting quite shattered from not sleeping properly for nearly 7 months now!
Frannie, you were alright about the steroids, since I had to start them yesterday for the chemo today the pain on the Hickman line has gone! Amazing! Good anyway… Thanks for the advice.
I feel pretty ok at present, but I dread to think how will I feel tomorrow. Good luck for us all!
Im starting tax on thurs nov 13th im feeling very nervous, i have read it as terrible side affects , with finger nails dropping off ,and pins and needles, and posible aches in your feet and legs, that makes it impossible to walk.
can anyone offer me any advise . also does anyone get headaches between chemos currently just finished 3 FEC CAN ANYONE HELP ME .
MARYSIA X
I’m due to start Tax in December. About nails dropping out, a friend told me that Tax is light sensitive and suggested painting finger and toe nails a very dark colour so that they don’t get affected. Whether this works or not, I don’t know, but shall give it a go. Anyone tried this?
I’m also starting TAX December (18th if it goes to plan)…will be glad to get away from that disgusting red stuff that comes with the FEC - it freaks me out.
Hello all of you about to start Taxotere. There is a very good thread called something like ‘any good news about tax?’ which should help allay fears.
I’ve just finished 6 cycles of Tax with AC too, which has been very tough, but in retrospect it is just a phase in your life, it isn’t nice, but it’ll be over in a few months. I didn’t look at any threads about side effects - I just took it as it came and it was manageable despite getting most of the side effects there are! The worst for me is definately the mouth ones - I had shocking ulcers and oral thrush with each cycle. BUT there are always other meds available to help - I used Difflam AND Cordysol for my mouth and nystatin liquid for the thrush which did help. I also took painkillers - mainly just paracetamol (don’t use paracetalmol Extra as the caffiene/steroid cocktail will prevent you sleeping at all!) to help with eating.
Re nails - women I’ve known have experienced very different nail problems, but we have ALL had them. For me, my nails got very very soft for 10days following each treatment and ‘banded’ horizontally - they look stripey. I asked my onc about dark nail varnish and he said ‘if it makes you feel better, so it, but personally I think it looks worse than the stripes and it won’t make your nails stay on.’ So I didn’t bother and they are still on, but to split at the sides as a band grows out…
Maybe we should have a ‘top tips for Tax’ thread!! It really is different to the other chemos…
Good luck to you all
Big love Td xxx
PS I am SO GLAD I did it, and very proud of myself!
Stylish - hope you are coping after last week’s Tax. This point was usually my lowest day, so hopefully you will begin to pick up again soon.
Had my Hickman out today, v straightforward. Local anaesthetic painful, but kept reminding myself that it was better than trying to find a vein for each cycle.
Regarding nails - I didn’t put any polish on - they have become ridged and have “lifted” a bit - that’s the best way I can think of to describe them - but have hung on at the base and some normal nail coming through now, 7 weeks after the last cycle. Interestingly, I had painted my toenails and just left the polish on for the whole of the course - went for a pedicure last week, polish came off and toenails look completely normal!
The worst side effect for me was muscle weakness which got much worse with cycles 5 and 6, and am still getting over it. Had oral thrush each time - took Nystatin from day 1 and that helped. The only good thing was no sickness at all!
It really is a tough treatment - completely different from FEC. Good luck to all