Neo Tango Trial
Neo Tango Trial Hi everyone
I am new to the forum although I have found it really helpful reading everyone’s post over the last few months whilst buliding up the courage to join. So a huge thank you to you all!!
I was diagnosed with grade 3 invasive breast cancer that had spread to the lymphs in December 06 and I was reccommended for the Neo Tango Trial which I started treatment on in January.
Is there anyone else that has been on the trial?
Thanks
C
Hi
I was diagnosed last Thursday with Inflammatory Breast cancer and I’ve had my first chemo session on the NeoTango trial yesterday, I had Paclitaxal follwed by the gemcitabine, the gemcitabine hurt like hell going into my arm but it eased when they put a heat pad on it thankfully. I haven’t felt too bad since, felt a little sick yesterday evening but just tired today, lets hope it stays like this for the rest of the trial.
Debbie
x
I’m on Neotango too Hello
I’ve been on the Neo tangp trial since last October, and there are at least 3 more of us on this site.
I found that it means you get all the treatment spot on, and get monitored really well. I found the 8 cycles of chemo, 4 taxol then 4 EC, with no gemcitabine, really tough - BUT it’s do-able, and the best part is the results - when I had mastectoomy and full node clearance, they could not find any active cancer cells left - the chemo regime had zapped them completely
hope it works as well for you
Photolady
Neo tango Hi Chanel
I was also diagnosed with grade 3 invasive breast cancer with 1 lymph node affected in Sept 2006, my cancer was also triple negative.
I was on the neo-tango trial, I started my chemo last October and had 4 Taxol followed by 4 EC, the chemo was tough going but was truly worth it. I was able to have a WLE and full ANC instead of a mastectomy as my tumour reduced down to nothing on the chemo and the results of my OP were even better as they found no trace of the cancer left.
You will find there are quite a few ladies on here who have been on the neo tango trial and they all had quite positive results. Right now I am having 6 weeks of radiotherapy, I am of for my fourth treatment soon, any questions just ask everyone on here is willing to help as much as possible and all the ladies on here have a wealth of experience and can normally answer any queries.
Good luck with your treatment, take care
Rizzo
Me too Hi Chanel
I too was on Neo-Tango. I was diagnosed last June with IDC that had spread to lymph nodes, I am also triple negative. I was on EC first followed by Taxol and Gem, as with the other ladies I had no cancer left when I had surgery and had WLE and ANC. I am really pleased with the surgery there is no noticeable size difference to other breast and the scars are really neat. I finished treatment in March and feel great, I wish you every success with your treatment. Look after yourself.
Love Lisa
Me too! Hi ladies - I’m another one who hasn’t posted before but I’m on Neo-Tango too. The same arm of the trial as Debcat - Four lots of Taxol plus Gemcitabine, then four cycles of EC.
So far I’ve had 3cycles of chemo and it’s been much easier than I imagined it would be (although the Gemcitabine does hurt - I’m glad you mentioned that. I thought I was just being a wuss! )
I did have real problems with joint pain after the first treatment (until I gave in and took the steroids) but I haven’t been at all sick or nauseous and I’m still getting to work.
I’m hoping the EC part of the treatment will go as smoothly and won’t make me sick. I’ve bought some seaband acupressure bands for nausea, just in case, and found some chewy ginger travel sweets in the local chemist. Very tasty even if I don’t need them for medical purposes!
And…best of all… the oncologist said the tumour was already smaller after the first two cycles.
Anyway good luck and I hope your treatment goes as well as mine seems to be going!
Julie
Yep! Me Too!! Hiya,
I’m also on the NeoTango trial. I was diagnosed March with invasive BC. I have my last EC on Friday this week and then am due to have 4 lots of Taxol with Gemcitabine after that. (Dreading the Gem now though after what i’ve just read!!)
I too have been very lucky with very few side effects from the EC, no sickness etc, but hair all gone!!
Like Julie, and others who have posted, my oncologist said my tumour appears smaller too. Keeping my fingers crossed this continues!
Anyway, good luck with your treatment, it’s suprising how quickly time flies when you’re counting the weeks between each treatment!!
Take Care,
Janette X
Gemcitabine Hi Janette,
Please don’t be worried about the gemcitabine. The nurses on my ward kept checking that I was OK, slowing the drip and and increasing the flow of saline until it stopped burning. It was really only uncomfortable for a few minutes. I AM just a wuss! The only downside is that the treatment does take even longer to administer - last week the taxol and gemcitabine took more than seven hours with the pre-meds. Make sure you take a good book to read!
Also, thanks for the reassurance about the EC side effects - I’ve been very worried about feeling nauseous when I change drugs, so I’m glad to hear you haven’t had a problem with epirubicin.
Might not be such a bad summer after all!
Julie
Thanks Julie! Hi Julie,
Thanks for the post, I know everyone is different but you still worry don’t you?
Seven hours to administer - blimey!!! I thought about four hours would be about right. Think I’ll take you up on the idea of a book!!
Good luck with the EC treatment, I’m sure you’ll be just fine!
Take care,
Janette
thanks everyone Hi everyone
Thanks to you all for your kind words and support. I’m so glad that i’m not alone on the trial, it all feels very lonely at times, although my research nurse has been brilliant.
I started on the trial in January with 4 taxol that had no effect on the tumour at all. I then had 4 EC which have been really tough going with lots of sickness and generally feeling pretty awful but on the positive side I have still managed to work full time and having had additional MRI scans due to the taxol not working they found that I had, had a complete response with the EC. So much so that my oncologist has agreed to me having an extra two lots of EC to make sure we get rid of the secondarys. This hasn’t affected the trial. So it’s round 9 tomorrow, more sickness and feeling pretty awful for another 12 days but hey if it’s doing the trick it’s worth it. Surgery is now planned for July followed by radiotherapy.
Good luck to everyone and thanks again.
Take care
Chanel
Woman’s hour I switched on the radio this morning to catch a woman’s hour feature on new treatments for breast cancer, including an interview with a woman taking part in the neo tango trial. She was on the Paclitaxel/ Gemcitabine arm of the trial (followed by EC) and she’d had a very positive result.
One of the speakers was from Breast Cancer Care.
You can listen to the program again on the BBC Radio 4 website, at least until Friday morning, but it might be repeated on Saturday afternoon in the ‘best of’ edition.
Julie
Hi Julie
Thanks for bringing our attention to radio 4, just had a listen the neo tango trial does seem to be having excellant results but I wish they would ask more about triple negative cancers when talking about all the new drugs available. They always seem to talk about oestrogen positive and HER 2 cancers but forget there are a smaller number of people who are neither. The discovery of the genes sounds interesting and hopefully will benefit all types of BC in the future. Thanks again
Lisa
Hi C,
I was diagnosed last October and started Neo Tango in November 06.
My lump did shrunk and I had it removed along with lymph nodes on 18/4. Fortunately( and after a nerve racking wait!) I was told that they
had removed all the cancer. I am about to start radiotherapy in the near future and tamoxifen as my cancer was hormone positive. My experience of neo tango was positive although the side effects were bad at times. How are you finding the side effects?
M
side effects Hi Marigold
The side effects have been wicked at times!
The Taxol wasn’t too bad - a few aches and pains, loss of sensation in my fingers and toes and rapid hair loss (despite the cold cap). The EC has got harder every time, lots of sickness, aching, tiredness and a constant horrible taste in my mouth. Despite the side effects I have managed to keep working full time.
I had no response to the Taxol at all but have had a really good response to the EC, so much so that my oncologist agreed to me having 2 extra lots of the EC. (The trial agreed to this)
What were your side effects like?
Chanel
womens hour Hi
Thanks for the posts about womens hour. I have managed to listen to it by going on the BBC radio 4 website and then going to the downloads and podcasts section and following the links through to womens hour.
It was an interesting discussion. The lady going through the trial sounded really positive and was very eloquent.
It does always seem to be the case that everyone talks about ‘hormone positive’ treatment.s. I too am triple negative!!!
When I found out that I was not on the arm of the trial with the gemacitabin I was really upset, I wanted everything they could throw at me. Wouldn’t it be nice if we could all make the choices that the lady on the programme refered to?
Chanel
Hi Chanel,
I had the EC first and although I managed to work throughout most of it I did feel sick for a lot of the time. Towards the end I got really tired.
I began to feel sick even at the thought of the red Epirubicin going
into my veins!
The worst thing about the taxol was the joint pains in the legs/hips
on the 3rd/4th day after having it. They were bearable(just!) because i knew they would ease off. The other thing I found was that I put on weight which I could have well done without, I know it sounds silly when you have a life threatening illness to be so vain but I couldn’t
stand the sight of my bloated eyebrowless face!
I blamed it on the steroids they give you to prevent the sickness but
it was probably comfort eating and lack of exercise.
The other thing is the early menopause, I was 43 when diagnosed
and hoped that my menopause was years off. The hot flushes add insult to injury but I am getting more used to them.
The worse thing about the Taxol/ gemcitabine part was the amount of time it took to have it. The Hospital where I had it usually had a 2 hour wait before you were actually wired up.
Still, I look back and it doesn’t seem to be so bad! A bit like child birth, you forget!!
Good luck to everyone still having chemo, hang in there.
M
Uggggggghhhhhhhhh!
That’s how I feel today, had my second lot of Pac and Gem yesterday, hair is coming out at a rapid rate, and my taste buds have given up the ghost, nothing tastes right and that’s the thing that’s bothering me the most at the moment, guess I’d better crank up the spices in all my food, has anyone else had a problem with their taste buds, does it last long? I didn’t have this problem with the first dose, most annoying, not looking forward to the pains starting up again, I was told they couldn’t give me anything to help with the pain, I’m already on top doses of antiflammatory drugs, and nobody has offered any sort of steriod as I’ve noticed that a couple of you are getting them.
OK, whinge and moan over, going to fall into bed and pray for a sleep to take me through the next 4 months of treatment, lol!
Debbie
Dodgy joints and sore toe bones! Hi Debbie,
Hope you’re feeling better today. I can’t taste much either! I’m finding a lot of things I normally enjoy very disappointing (like new potatoes and asparagus, it’s really the wrong time of year to lose my taste!.)
I hope they find you something for the joint pain. The steroids I was given were Dexamethasone - the tablets given to take home after the chemo. I thought (or I was told) they were just to stop sickness and as I felt fine I didn’t take the first lot - not after I’d read the list of steroid side-effects - they sounded worse than the chemo! The hossie didn’t tell me the steroids were supposed to help with the joint pain and other side effects too until I went back. Anyway the pain wasn’t even half as bad during the second or third cycle so I think the Dexamethasone did work. And there’s been no pain at all this time.
For the second cycle they also gave me several packs of codeine phosphate because I can’t take ibuprofen based painkillers - I’ve got asthma - but I haven’t really had to take any since the first cycle. Maybe you could ask for something like that?
My four gem+taxol cycles have gone by really quickly. At this point I’m just suffering from the runs and general tiredness. Not pleasant but manageable. I’m just waiting to see what the EC brings!
I’ll keep my fingers crossed that your hospital comes up with some decent painkillers for you too.
Julie
steroids and taste buds Hi
I had the taxol first and wasn’t given any steroids at that point. I just took nurofen for the aches and pains.
I started on the steroids as soon as I started the EC. My oncolgist gave me slightly different information, he said that they were just for the sickness. I have put on two stone with the steroids. I know weight shouldn’t matter in the grand scheme of things but somehow it does. I hate the way I look at the moment. I always used to take great pride in my appearance and without sounding vain worked hard at being thin, in good shape working out a the gym and spending a fortune on having my long hair coloured to perfection every 4 weeks. I’m now fat, unhealthy and nearly bald!!!
My taste buds have gone totally weird too. I seem to have a constant strange taste in my mouth that i’m not sure I can describe. I used to love drinking cappacinos and now the thought of them makes me feel sick. I used to hate coke and now seem to be drinking that for a week after chemo. It’s pregnancy cravings!
My periods stopped too about halfway through the chemo. I’m having menopausal symptoms at the age of 35.
There is comfort that other people are in the same boat and afterwards seem to be ok. At least on the trial there is the added comfort that we are getting everything possible to beat this thing so I guess all these side effects must be worth it.
Love to everyone
Chanel