neo tango trial

hi shannon
how are you ,? i have only just caught up with this thread, sorry to read about your car ! i had my operation last week, i would be fine if it wasnt for a build up of fluid in my armpit but it will drain itself eventually!! i get the results tommorow hopefully , my trial nurse told me they are hearing of great results from this trial and it is all very encouaging
The hot sweats do calm down when you finish treatment i really suffered at nightime but they seem to be settling down now thankfully, i am really looking forward to christmas, i am worse than my children but it is keeping me busy, i hope you manage to get in your new house for christmas
take care
love galen xx

Galen so glad the op wentt well. Its sounds good news about the trial. All the best with your results.
Shannon glad things are getting better, what a nice neighbour you have. Taxol made me hperactive for the first day or so then I went downhill! I think you are rightits all the steroids.
Woke up feeling really sick in the night and its worn off a bit during the day. I am trying to drink as much as possible. Feel washed out as well. Looking forward to picking up.
Do hope the blood tests are good tomorrow, thinking about you. It will be great to great to get on with the treatment.
Let us know how you get on.
Love Alison x

Hi Galen and Alison,

Thanks for the messages, and pleased to hear you both seems to be doing ok…Galen, how is the fluid build-up now? Has it eased? It must be nice having children around for Christmas, although I guess they are a lot of work, I’m going to miss seeing my nieces this year. Have you had your results yet??
Alison, hope you’re doing ok with the nausea… if not ask for some different meds, I had to change mine. To help the nausea, see if eating little and often helps, it may be easier that trying to tackle big meals…
So I’ve had a frustrating few days. Went for my blood test yesterday, then did some unsuccessful Christmas shopping, was just going to do some food shopping when I had a call to go back to the hospital as they hadn’t taken enough blood, so had a second blood test. Went in this morning for chemo, only to be told my count was low, so had to have yet another test! This one was even lower, so I’ve been sent home and told to go back in next week. This means my chemo will drift into early Jan, and I was so hoping to be finished by the end of the year. Oh well. I’m checking my temp regularly just in case. :o(
On the plus side, I have a meeting with the surgeon arranged for next week, so will be able to find out more about surgery dates and options then.
Take care, and thinking of you both,
Shannon
xx

Shannon sorry to hear about the blood tests its really frustrating. Just take it easy and keep away from sneezy people. Hopefully next week you will be able to continue.
I think I will take your advice and ask for some different anti sickness pills as the nausea is still bothering me.
Galen I hope that the fluid build up has cleared by now.
Hoping my energy levels are going to begin to rise now and my fuzzy brain will clear!
It will be good to see the surgeon Shannon, you will know that things are moving forward and know what to expect. It will also feel that the end goal is well in sight.
Take care the both of you.
Love Alison x

Oh Alison, I had hoped that you wouldn’t have the nausea, as everyone has different reactions… it was the biggest factor for me hating the EC, and actually not minding the Taxol, as I haven’t felt any nausea with that.
Its worth trying travel sickness bands if it persists, I know lots of ladies find they help, if we could exchange details on this site I’d post mine to you, I won’t be needing them again! (Try Boots or Superdrug)
Keeping my fingers crossed that it doesn’t last!!! When I was feeling at my worst, I still managed tomato soup and tinned raviolli, and drank Lucozade…
And forgot… other news… I have a new BCN, they have replaced the trials nurse, and the new one is my chemo nurse from my first visit, she’s really lovely and very efficient, so expecting all my answers regarding the Herceptin on my next visit, bless her.

Hoping you both are doing ok…
Love Shannon
xx

Shannon, really glad you got a new BCN that is good, it makes such a difference…I have met quite a few people on Herceptin and it sounds marvellous.
My trials nurse is really detached and has not been alot of help. However I spoke to another the other day and she went to see my ONC to answer some of my questions and was great so I will try to get hold of her if I need some help.
The nausea is driving me wild and I will get some travel sickness bands tomorrow, along with lucazade, ravoilli and tomato soup.
Hope you are taking care of yourself with the low count, there seem to be so many bugs about at the moment.
Got some more shopping done on the internet today, I have really got into it now! I think I am nearly there with the shopping and what does not get done is tough!
Hope you are getting on alright Galen.
Take care all
Alison x

hi sorry i havent replied sooner, feel a bit washed out started with a cold a couple of days ago !! i had to get my fluid drained again for the 2nd time as it was getting bigger and tighter, it has filled again but not as quickly, i get my results this afternoon at 4pm straight after my little girls nativity play !! and having it drained again i will let you know how i get on
love galen xx

Hi, just seen Galen’s report on her results on the other thread, fantastic news! Hope the fluid isn’t causing so much bother now, and the nativity play went well, bet the childen were all so cute and entertaining, and so excited about christmas!
Alison, hope you’re feeling a bit better, and coping with the nausea. How is it now? Have you finished your shopping yet? I’ve still got loads to do, but told everyone if I can’t manage, they’ll have to wait until Jan for their pressies!
I’ve had a bit of a head cold, but no sign yet of anything worse. had my parents here for a few days, it was lovely to see them. Still avoiding sneezy people… have been trying to chase up by BCN about the HER2+ tests, but haven’t managed to get hold of her yet.

have a good weekend all,
Shannon
x

Hello
Also just read Galen’s post and so so pleased at the great news. Its given me hope now as I have two positive lymph nodes. Hope the fluid clears really soon Galen. It must have been lovely to see the nativity play.
The nausea is slowly getting better. Got out of the car quickly yesterday and nearly passed out ! I keep forgetting to take things slowly! Been feeling very tired, which is different to the Taxol where I felt hyped up.
Good luck with the shopping Shannon. Did some more online today and sent a couple of people some cakes from a site!
Sorry to hear about the head cold just make sure you look after yourself and make sure you give yourself lots of treats. OH is very sneezy at the mo and I am terrified of getting his cold!
Hope you get hold of the BCN very soon to get the results.
Have a good, weekend everyone
Alison x

Yay!!! Bloods were back up, so had 3rd taxol today. Consequently sitting here despairing of late night TV, laptop on lap, while OH is snoring away in bed. Ho hum…steroid attack… tomorrow will be what has become called my ‘blue smartie’ day, when I run around like a hyperactive child with an E number overload and sugar rush combined…only problem now is I realise I will feel pants for Christmas day but better for NY Eve, the opposite to what I have been planning around, and worse than that, my brother, sis-in-law and 6 yr old energetic niece are coming to visit this Sunday, which will be my worst day…it will be lovely to see them, but not sure what I’ll be able to manage to do!!!
But all pales into insignificance as my 75 yr old mum took a tumble on Monday and broke her thigh. She’s in hospital over 300 miles away and has issued instruction that I must NOT travel to visit her…but that’s so hard!!! She’s waiting for surgery, and they have said all being well she should be home for Christmas, but my dad seems to be struggling more than she is! Bless him.

We were comparing notes on different chemos today, and everyone who had been on EC said the same - immediate dip, very tired, but gradual recovery to give 7-14 days (we varied on that!!) feeling not too bad, with reasonable energy levels - so does that mean you’ll be ok over Christmas? When’s your next chemo?? How is the nausea doing, have you passed through that yet? Hope things are improving for you now…

Oh well, off to wander around some more threads and other sites, may even do some more surfing for pressies, and hope I’ll feel tired at some time :o)

Take care
Shannon
xx

So so pleased that you could have your treatment Shannon, great news. Yes the steroid attack I was just the same as you very hyper! I think that you may be feeling a bit better by Christams day, fingers crossed.
It will be lovely to see your relatives on Sunday, but just sit back, I am sure they will look after themselves and be understanding.
Sorry to hear about your Mum, band understand your frustration at not being able to visit.
My next chemo is the Friday after Christmas so thats New Year out! Just so desperate to get to the end now. The nausea is so much better but the EC has really messed my stomach up. Feel more energetic than I did on Taxol and definatly less anxious.
Hope that you can get some sleep. Take care and good luck with the shopping.
Alison x

Hi Alison,

Well, Christmas eve is here… we’ve been out at some friends for a fun evening, and it was great to see my brother and family on Sunday. I’ve done as much as I can, so that’s it. I’ve had some bad pains etc for the last 3 days, so not everything is done, but I’m past caring!!!
Hope you have a great christmas day, catch you soon.

Lots of love,
Shannon
xxx

Hello Shannon

So glad that you managed to get out on Christmas Eve, its sounds as if you are doing really well after your treatment. Hope the pains go soon.
I am feeling alot better. However had to go to A and E on Christmas day as I had a bad attack of SVT, very fast heartbeats. I have had them for years and occasionally get a bad do but its not life threatening. They had ti give me an injection which stopped them immediatly. Going to talk to ONC on Thursday as the chemo could be aggrivating things.
Anyway wishing you a late Happy Christmas and take care.
Love Alison x

Had my sixth treatment today and second of EC . Felt the usual apprehension before hand but now it feels great that I have only got two treatments to go. I never thought I would get this far when I started out!

Hope Shannon and Galon are well.

I have a new trials nurse and she is so much better. Also got an appointment through for the surgeon at the end of Jan. I suppose this will be to discuss my op.

I am beginning to see the end in sight at last, and it feels good!

Best wishes Alison x

Hi Alison,

Well done! Only 2 more to go, and good you have your appointment date already! Something to aim for. Hope you’re managing to keep the nausea at bay this time around. The visit to A&E sounds a bit scary, but sounds like its something you’ve dealt with before…did you still manage to fit in a christmas dinner? And good news about the new nurse, it does make a huge difference if you have faith in the staff who look after you.
I saw the surgeon the Friday before Christmas, and feel very happy. I’ve decided to go for the expander inplant that gets left in. That was what was offered originally, and having gone through the process of thinking about LD flap and DIEP, and speaking to a few ladies, I went full circle and ended up back with the implant. My surgery is now booked for 28th Jan.
Only one more chemo to go now for me, on 2nd Jan as long as my bloods are ok.
Hope everyone else is well.

Shannon
x

hi all i have been on the neo tango trial since august. had 4 gemcitabine/pac first followed by 4 ec.Had 3 ec so for and get my last one on 9th january. then i have to have a mastecomy. i have had the bad taste and leg cramps with first lot. on ec i get really bad panic attacks and feel really paraniod. this lasts for about 7 - 8 days then i start to feel normal again. i am hoping to get my operation some time in february. i am worried that i will need more chemo after operation as i dont feel i am strong enough both mentally and physically to cope with this. my tumour did shrink after the 4 gem/pac by half…it was 10cms to start with. has anyone had to have more chemo after operation. hope everyone has a more healthy and happy new year.

maria40

Hi,

My Mum has started ec chemo and has had two sessions. I’m worried that she isn’t eating enough. She is on her second nausau tablets but I’m worried she still isn’t eating enough. She has mets to the lung.

Holly

Hi Holly - I wasn’t on the neo tango trial, just on 6 x FEC, some 4 yrs ago now.
I had complications with Crohn’s and had total faecal incontinence. I did try to eat, could only manage poached eggs, mashed potatoes and cold jelly. My weight dropped some 28 lbs in 3 weeks and my Onc put me on a small dose of dexamethasone daily, and then for 4 months I lived on liquids - Fortijuice, which she prescribed and the hospital sent to my home, free of charge, as all my meds were for breast cancer even though I was not 60 yrs then. It is a fruit type drink, 9 different flavours (all yucky, don’t tell your Mum that), and each carton has 300 calories. I had to drink 3 cartons a day, but it kept me alive. Could you or your Mum ask her Oncologist about prescribing this for her? I did take my nausea tablets religiously - think they were domperidone and granisetron, and although I did not vomit, felt very nauseous,and I couldn’t even bear to smell food. My husband, who was 75 yrs then, learned to cook, otherwise he would have starved as we live in an isolated Fort on Plymouth Sound, so no take aways and he won’t eat out on his own.

The Fortijuice was really a life saver for me. The other thing I found very helpful was anything with ginger in it. I drank gallons, really, of ginger beer, ginger ale, and very occasionally had a treat with an ounce of Stone’s Ginger Wine topped up with ginger ale and ice. Tasted like champagne to me!

Please try it… and hope your Mum soon feels better. She really must get some vitamins and minerals into her body, even if it only Fortijuice. I have now put on the lost 28 lbs and doing well.

Liz.

Hello everyone

Shannon I did manage to have my Christmas Dinner ! the minute I finished I had SVT and had to go to A& E !
Do hope that your blood tests go well on the 2nd and you can get on and finish the chemo. Its really good that you have sorted what you want from the op.Not long to go and it will all be over and you can have a big celebration. Hope you have a wonderful New Year.
I am feeling quite sickly today and hope it starts to get better tomorrow.

Mario40 I can sympathise with the nasty taste as I get it as well. I must say I felt more panicky on the Taxol, I suppose its just how we all react. Its not a nice feeling. Hope that you manage to get your chemo on the 9th. Has your Onc mentioned about chemo after your op? After mine I am having radiotherapy followed by Arimadex.

Hollyo1 very sorry to hear about your mum it sounds as if Liz has some good advice.

Best wishes everyone.

Love Alison x

hi shannon

my onc has told me very little about my treatment plan and whenever i asked any questions i was just told to be patient and wait tell end of first lot of chemo. this statement has made me panic just at the thought of more chemo. i am hoping and praying i dont need any more and just need radiotherapy. if i am told i need more chemo i dont think i will take it.

maria