Hi to you all. This is the first time that I have been on the forum although I have enjoyed reading all your postings. I am on the neo tango trial and tommorrow will have the last of my long treatments (gemcitabine and pacletaxel together) It takes hours! 4 hours total for the chemo to go through and then there’s all the waiting. Usually get home at about 7.30. My appointments at 11.15 so get a bit fed up! This has been evry 2 weeks for four lots of treatments.The good news is that it is shrinking the tumour. After this I will go onto EC every three weeks. I have kept pretty well. Fine on thirs and Fri but then achy and light headed Sat Sun and Mon. Does anyone else get a horrible taste in their mouth? Can’t taste anything for about four days. Also have been breaking out in lots of spots on my back and head a bit like acne. Hope I don’t get this with EC. Anyone else had the same sort of experiences? Once all this is over my consultant will decide what sutgery i will have. Just taking each step at a time. Can’'t belive still that this is happening to me.
Hello joeamy
I am on the same trial as you and have just finished 4 taxols.I get that horrid taste in my mouth as well in fact its pretty bad today. I have not had spots but get very dry skin. Great news about your tumour, mine is shrinking as well! I start EC a week tomorrow and feel a bit nervous but at least will not be sitting around for hours. I am just hoping my op at the end will not be too big but as you say its one day at a time. I have to have radiotherapy after the op.
With best wishes Alison x
Hi
I was on the same trial and have just finished my 8th yipee!, i had a horrible taste in my mouth and found pineapple ice lollies fab and fruit pastilles, i also had acne like spots they were on my scalp and down my back as well, it turned out to be infected hair folicles and i had antbiotics and it cleared , do yours itch ? I would get it looked at as i left mine to clear up thinking it was a side effect from chemo!!. I wasnt too bad on the EC but did feel sick and they needed to change my tablets a few times so dont suffer in silence there are loads of different antisickness, i am having my surgery on the 27th november i am meeting my consultant next week to discuss exactly what they will do , my tumour has shrunk so i hope its a WLE and lymph node removal, then rads and herceptin, get the spots checked out and let me know how you get on.
Big hugs
galen x
Hi joeamy
I was also on the same trial as you, but had 4 lots of EC first, followed by 4 lots of paclitaxol and gemcitabine.
I found the bad taste in my mouth with taxol absolutely awful, it made me want to throw up. I agree with sucking on ice lollies, and also lemon sorbet, or anything with lemons in to be honest - lol ! I did lose my sense of taste with EC to a degree, but not half as bad as taxol. Unfortunately I was very sick on EC (don’t panic - not everyone is !), but once we found a drug to stop it (cyclizine), I was a lot better. The tiredness was also an issue for me, but you just have to give into it and sleep when you need to.
Half way through my chemo, my tumour had shrunk to less than half its original size, and once the chemo was finished, it had gone completely. I’ve since had a mastectomy and my lymph nodes removed, and will be starting radiotherapy on 26th November. Still got a fair bit of treatment to go (i.e. reconstruction and herceptin), but am feeling so much more positive.
Welcome to the site by the way ! I’ve found it to be absolutely brilliant - the advice and support is second to none, and we do have laughs too at times !
Good luck with the rest of your treatment
much love
Julie xxx
Hi everyone
I’m a neo-tango girl too. Finished the chemo last month, and had a WLE a couple of weeks ago. That taxol may taste bad and make you ache, but it does what it says. There was no sign of the cancer left in the tissue that was removed.
Neo-tango is having very positive results and is known to be excellent at shrinking tumours. Mine started at around 3 cms and disappeared completely, and I understand this is quite common.
Now, while this is obviously good news, please can I pass on a warning. If you know your tumour is shrinking, it is vital to have it marked. This is done by inserting small plastic ‘pins’ into the breast under local anaesthetic. The neo-tango trial protocol states that all tumours should be marked at an early stage of treatment. However, the drugs company does not pay for this to be done. As it involves half an hour of a radiologist’s time and an extra mammogram, hospitals are not all keen to do it as a matter of routine.
Does it matter? YES. If your tumour disappears from sight and is not marked, you may have to have a mastectomy anyway; otherwise the surgeon cannot be certain of removing all affected tissue. I know there are other women on this site who have lost their breasts despite a complete clinical response, simpy because their tumours were not marked. It is completely unacceptable that this should be happening, but the truth seems to be that it is cheaper to perform mastectomies than to carry out procedures which may avoid this necessity.
So PLEASE, if you know your tumour is shrinking and you have not been offered a marking procedure, demand one NOW. “Because you’re worth it.”
Cheers. Stockbeck
Thanks for replying to me. It’s so nice that we can talk about our experiences. I am due to start EC on 27th Nov and on 28th am taking my girls to see Joseph in London. In your experience do you seem to suffer sickness the day after. Am a bit worried that I might be throwing up all the way to London but my consultant said I should be fine! Any thoughts? Thanks also for advice on spots have been to my GP who aloso said infected hair follicles and has given me antibiotics so should be better this time. Am due fro an ultrasound next week to see what progress has been made this time before I start EC. Con sultant said that tumpour has gone much softer which he says is good.
PS I will ask about tumour marking. This has not been mentioned to me at all so was very interested to hear about it. Thanks
Hi Ladies,
I’m on the neo-tango trial too, and on the EC/Placlitaxel combo with no extras, I think its the standard treatment for comparisson. Ive had my 4 EC, and it was very effective, the 5cm lump had completely gone after the 3rd cycle, which was confirmed on ultrasound last week, fab news! I did feel quite nauseous for the last 2 cycles, but just felt tired througout. I was very nervous about starting Placlitaxel, but had my first one on Tuesday this week, and so far so good, feel much better than on EC! No nasty taste, seem brighter in the brain department and less tired, also no nausea so far, but still taking my anti-sick meds ast the mo, so fingers crossed…
On the tumour marking, I did ask about this, but was refused. As I’m quite small, A cup, they said no matter if it disappeared, I would still need a mastectomy, as I did not have enough “viable tissue” remaining to consider a lumpectomy. I’m ok with this, as to my mind, anything that might increase my chances even fractionally is worth it, and only having A cup boobs I don’t think I have the same body image issues that a more fully endowed lady might.
Nice to hear about other experiences, its good to hear how you other ladies are getting on!
Shannon
x
Hi Everyone
I had 4 lots of EC first, followed by 4 lots of paclitaxol and gemcitabine.
I must agree with Julie that icepops do help with the horrible taste with the taxol, and i also lost my sense of taste on the EC which got worse when going onto the taxol. I found the taxol/Gemcitabine the worst part, think due to the time that it took. my last chemo was 24th Oct and am getting back to normal, just a few tingles left in my fingers and toes and my taste buds are coming back slowly.
Like the rest of you my tumour did shrink tremendously from 7.5cm x 7.5cm to 2.5cm. i had an ultra sound on the 30th Oct and showed only a few specks of cancer calcifications.
I am at the moment 7 days post op after having bilateral mastectomy with stretcher implant reconstrcution and am doing really really well due to start rads i think after xmas.
It was agreed at the start of all my treatment that i would be having a mastectomy due to the size of the tumour. but i have had plenty of ultra sounds throughout keeping a check on the calcifications of cancer. It was mentioned after the 4th treatment about having a marker put in until they realised that i was having mastectomy anyway So like Stockbeck says PLEASE ask your breast nurse or reasearch nurse to sort this out for you.
Good Luck with the treatment, hopefully you’ll breeze through it
Much Love
Karen
P.s Has anyone had any weight gain during this trial. I have put on a stone.
Hello all
Read all the above with interest as I mentioned befre that I am on the trial. Just finished 4 taxols and I am due to have a marker put in the tumour on Monday. Cannot believe that this is not routinly offered in all hospitals. Best of luck all of you.
Alison x
Hi
Just read your comment about weight gain Karen r. Yes I have put on quite a bit of weight. I am sure it does not help having the steroids at fortnightly intervals during Taxol. I am frightened to weigh myself but my clthes are getting so much tighter! I have such an appetite and cannot seem to get enough food! Really will have to be careful when the chemo is finished but it seems out of my control until then.
Hi Tango Ladies,
How are we all getting on? Joeamy and Greenbean, how are you going with the EC? Did you have the treatment yesterday? And I guess Galen will be in hostpital for her surgery, its all happening!
Julie and Stockbeck, don’t know if you are still checking the the chemo threads, but hope neither of you are suffering any after effects from surgery, and Julie, hope your rads are going ok.
Karenr, hope the expander is working out ok, I’ve been checking your thread on Becker implants with Dilys, as I’m seriously considering this.
I had my second Taxol yesterday, following on from my 4 x EC. So far so good, although a VERY long day…not had any bad taste/mouth problems/nausea/loss of appetite (just the opposite!) Last time round I had some leg pains on days 6 -8, but nothing needing pain relief. I have numb finger tips and toes, this did ease off towards the end of the two weeks, but didn’t go altogether. I was very tired days 7 - 10, more lack of stamina to do anything, even standing up for a while!!! Only 2 more to go!!! I need to start asking about surgery dates I think… suffering at the moment from staff cut-backs, I’ve lost my BCN as she was a clinical trials nurse, but has been moved to another department, and I’ve not been given another contact, and my onc has been on hols, so I have a huge list of questions for next visit. I still have no feedback on my HER2+ status, as the original needle biopsy did not test this, and now my lump has gone I don’t know what they can test! Ho hum…
Hope you are all well, and not hit too hard with treatment, whatever stage! Take care all…
Shannon
xxx
Hello Shannon
Glad its going well and you are nearly there. My first EC has been delayed as I had an infection and was in hospital for 10 days. However looking forward to getting to the other end eventually! I had a coil put in the tumour yesterday so thats another step forward. I had achey legs with the Taxol and lack of energy. Do hope that you get a BCN nurse very soon. Also your HER2+ status.
Best of luck everyone Alison x
Hi Alison,
Do you have a new date for your EC yet? How is the infection… clearing up I hope… I did ask for a marker for my lump, but was told it wasn’t policy. But as I said, had been told I would need a mastectomy regardless, so guess in the big scheme of things it doesn’t make any difference… but hope it makes one for you, and that your tumour gets zapped by the EC too, so they need the marker! Fingers crossed for you…
Just suffering from other stresses right now, chemo is just another thing on the list. Had my car broken into last night, right outside the house we just bought. Really upset me more than it should… I think everything that has been happening has drained the fight out of me, I’ve nothing more to spare. The house needs quite a lot of work, and although my partner is in charge of sorting that out, it still seems like an uphill struggle, and with this incident it has taken all the shine and excitement out of it for me. We are still living in hs flat, and now I feel I don’t even want to move. :o( Hoping I’ll feel a little stronger in a day or two…
Take care all.
Shannon
xxx
Hello Shannon
So sorry that you had your car broken into you could really have done without that. I can really associate with your comments about having the fight drained out of you and nothing left to spare. I get very emotional at the moment. Still no date yet for the Ec, I suppose that I will have to phone if I do not hear anything soon. At the moment I just feel as if I have had enough and am glad of a break. I am still on some strong antibiotics until Sunday, which are not helping the way I feel. Also feeling quite weak which I hate.
Do not worry about the work your place needs, although I know how things can get on top of you. Just wait until you do feel feel better and give it as long as it takes.
Thinking about you and hope you start to feel better very soon.
Alison x
Thanks Alison, I’m usually a positive person and although like most I’ve had ups and downs, this really knocked me for six. I was so looking forward to moving to the new house, last chemo is due week between Christmas and New Year, and we were planning to be in by then, so had so much to look forward to, but this seems soured now. I hope I can get past it, I’m sure I will… I’m going through the tired phase of the Taxol now, with any luck I’ll feel stronger in lots of ways in a day or two!
Sorry to hear you’re still on the antibiotics and they’re making you feel weak, hopefully they will do the job and you’ll be fighting fit again soon…keeping everything crossed for you! Lets hope they can get you on the EC soon, and you get some fab results. It was the best news yet for me when they said my lump had gone, makes everything worthwhile.
Thinking of you too, take care of yourself.
Shannon
xx
Hello Shannon, do hope that things are going better now. Hopefully as the days go by the feeling you have about your car will lesson and you can look forward to the last treatment and moving.
Been to the hosp. today and I told the consultant I still was not fully recovered so he agreed to me having my first EC on Friday. Cannot say I am looking forward to it but it has to be done!
Hope that you are feeling stronger now. I also felt like that after treatment.
Thinking about you.
Aliosn x
Hi Alison,
Feeling better this week thanks, had the usual aches and pains and tiredness, which is passing now. One wierd side effect is that the numb fingers are affecting my sleep! As soon as I drop off, my brain wakes me up as it thinks I’ve fallen alseep on my arm, and cut the blood off to my hand!
Generally feeling a bit more positive though.
Good luck for the EC tomorrow, if you have any side effects we might be able to help with, jump on here and give a shout. In preparation I’d just suggest having plenty of drink, and taking some sweets or chews with you incase the ‘C’ part makes your nasal passages tingle - you can eat them even if it doesn’t!
Thinking of you…
Shannon
x
Hello Shannon
Just got back from my first EC and after getting in a terrible state it all went well. Thanks for the advice about the sweets, I did get the tingling feeling in my nasal passages, which was weird! My Oncologist had reduced the dose by 25% as I sometimes get troublesome palpitations due to faulty wiring.
Its interesting that you mention the numbness on taxol because I experienecd this. On two occassions my right leg went numb which was rather alarming, after sitting for a while. My arm went numb many times in bed.
On your advice I have started to drink alot.
Best of luck and let me know if there is anything I can help you with the taxol.
Take care Alison x
Hi Alison,
How are you feeling? Hope the side effects aren’t too bad for you… I was told by my chemo nurse about drinking lots as the ‘C’ part of the EC can irritate the bladder if left sitting in there too long. I went off a lot of drink, and Lucozade was all I could face.
I found that with EC I had an immediate effect, felt tired etc, for the first 4 or 5 days, then gradually felt better through the 3 weeks, meaning I had a good 7 or more days at the end when I felt ok… With Taxol I’m feeling hyperactive for a day (steroid effects I guess!!) then gradually feel worse, with the worse day about day 5, then start to feel better again, but just as I’m getting back to feeling ok, its back for more!!! Still, I’m back in Tuesday for the 3rd dose, then its only one more after that. I’m just finding the hot sweats a lot worse with the taxol.
My numb fingers are just getting some feeling back now, only the tips are affected, but I’ve been fighting off a cold. My digital thermometer’s battery went, so I have no idea if I have a temperature, but don’t think so, but I have a headache today so did take some paracetamol. Fingers crossed for tomorrow for my blood test. I also have to see my onc, and have a whole list of questions I need answers to.
On other things, I’ve had several calls from local plod about the car incident. They have been very reassuring that this was a very isolated incident, and our lovely next door neighbour has said I can park on his drive if needed until we get the skip off our own drive. I’m feeling a lot better about it all now. Work on the house is progressing fast, although I still don’t know if it will be ready for us to spend Christmas day there. My fingers are crossed!
Any other neo-tango ladies out there???
Take care Alison, thinking of you.
Shannon
xxx