Waiting for the Chemo to start - TACT2 ??

Hi girls,
I have posted my results on the other discussions I had been involved in but thought I would start a new thread as I feel I am starting the next step in this whole mess!!!
My results were good - the cancer has not spread and I don’t need anymore surgery which is a huge relief. I had a grade 3 tumour which was 1.5cm wide, considered small by the surgeon. He was pleased with my recovery and has told me I can run again (with a good sports bra)!!! Berlei Shock Absorber watch OUT!!!
The oncologist was great. He has offered me the ‘full works’. Which I have taken as I feel I owe it to myself and my family to nail this if I can. I start Chemo on the 31st Jul. I have been asked to take part in the TACT 2 trials?? Any advise?? I have a leaflet which I have read. I need to let them know on Monday. Would be grateful for any comments.
I am back to work on Monday, my choice. I am in the Navy and they have been wonderful. I can pretty much dictate what I do, which may be handy when I start chemo and rads.
No results for the Hormone or HER2. But he wasn’t concerned as it hasn’t affected the course of treatment offered.
So, overall I am very upbeat and positive. A great big thank you and hug to all of you that have helped me, I feel like I have new friends and haven’t even left the house,
sending lol,
Tracy xx

Hi Tracy,

I have responded to your post re: TACT2 but in your ‘awaiting results’ on the newly diagnosed page,

Kelly
-x-

Hi Tracy

I took part in the Tact 2 trials and was on the arm that involved 4xEpi and 4x Xeloda.
I kept reasonably well during both.

I did not work at all during my treatments as I work in a school office and am in contact with the children, and was wary of picking up any infections, colds, viruses etc.

I m glad that I took part in the trials as I felt that if it helped anyone else in the future it could only be good.

I hope this helps a bit whatever you decide.

Love and take care
Thistle

Hi Tracy

I’m on arm 3 of the Tact2 trial. 4 Epi and 4 Xeloda. Good thing about being on a trial is you get a trial nurse to liase with, so feels like you are getting better care. Also you have a chance of shortening the length of treatment - but of course depends which arm of the trial you are assigned to.

I’ve only had one lot of Epi so far, but am back to work this week before my next treatment next Thursday. Must admit, did feel unwell first week, but it is do-able. Hope it goes well. Let us know what you decide. Love Sunny x

Hi Sunny,

Thanks for your kind words - and advice. I have decided to go with the trial as I don’t have anything to lose but a lot to gain (hopefully). I see my oncologist tomorrow morning to sign consent forms and give MORE blood. They have more of it than I do!!! I will let you know what arm I get. Don’t know the difference between them as when the oncol was explaining it was double dutch. Once I know which one I will do some asking (if you don’t mind)??
I have pinched your word ‘do-able’ - I think it’s great!!! Speak to you soon, sending lol,
Tracy xx

Hi Tracy,

I’m also on “Arm 3” of the TACT2 trial… 4 x Epi, 4 x Xeloda… have my 3rd dose of Epirubicin this Thursday. The time is actually going in quite quickly and apart from the first few days after chemo, I’ve felt OK. I suffered from mouth ulcers after the first dose, but got gel and mouthwash from the hospital, which nipped one in the bud this time round… wish I’d had it last time!! So… don’t suffer in silence… tell them about any symptoms, to avoid having to put up with them. I also have had a bit of a problem with sickness the first day after chemo, so am getting my anti-sickness drugs changed. There’s a lot of threads on this site and the bcpals one about it, so I’m armed with lots of info, for when I meet the doctor. I thought going on the trial could only be a plus, as there was a 3 in 4 chance of shortening the length of treatment!! Dipping in and out of this site gives you lots of great advice and good to be able to get first hand advice…

AliS

Hi Tracy and AliS,

Know exactly what you mean by MORE blood - feel a little like a guinea pig in this game!

Tracy - I know I felt VERY scared before my first chemo session - really didn’t know what to expect, having the chemo was no problem at all, and now feel relieved that first is over and I know what to expect. Do ask anything… Just hope I can help. Please let me know when your first session will be. Did feel unwell first few days but have been painting and decorating and have been camping with friends this weekend.

AliS thanks for advice on mouth ulcers. Have got them after first session and thought it was my fault for not using correct toothbrush etc. will ask my oncologist for gel etc. when I see him.

Get bone scans results next Thursday - wish me luck.

Sunny xxx

Hi girls,
Been to see the onc this morning. I have opted for the TACT2 trial and have been given arm4. This is 4xepi and 14 days of tablets. Seems like a good move. I am armed with info thanks to you guys, onc was surprised I had even heard of the trials - he obviously doesn’t use this site!! I have bought mouthwash (just in case).
What other side effects have you experienced apart from the sickness?? Has anyone out there put weight on? This bothers me and I know it is vain but I have spent 8 years losing and maintaining my weight, the thought of putting it back on is almost as scary as the chemo.
Sorry if this makes me sound shallow - I am not normally but I feel like I still need to be in control of something, does that make sense??
Good luck Sunny with your scan results - everything is crossed for you,
sending lol,
Tracy xx

Hi Tracy,

I think I’ve just replied to you elsewhere too! Chemo brain!! I have recently finished 4 x Epi and have just started CMF. Here are some side-effects and tips (feel free to ignore them as you wish cause obviously everyone is different):

  • I bought a really soft baby brush and also baby shampoo. My hair came out 2 days after my 2nd accelerated epi and prior to this my scalp was v.v.sore. The soft brush really helped.
  • Along with alcohol-free mouthwash I swapped my electric toothbrush for an ultra-soft bristle colgate one (to help prevent bleeding gums from low blood count).
  • Travel bands - £7 from Boots are awesome for sickness/nausea.
  • I slap E45 cream on my baldie head at night to keep it nice and soft.
  • Ginger biscuits/ginger ale - great for nausea if (like me) you can’t stomach crystalised ginger.
  • I have never suffered with constipation with the steroids (thank god!) and I think its cause I eat loads and loads of fruit and have a highbran cereal for brekkie the first few days post-chemo.
  • Don’t take your steroids any later than 2pm or you’ll have a mare trying to get to sleep.
  • You’re not being shallow worrying about weight gain, it’s totally natural. I don’t think I’ve put on any weight yet but I try to ensure that if I’m gonna pig out I do it with healthy stuff.
  • For ‘achy bones’ that I sometimes got 24 hrs after having the ‘neulasta’ injection that you’ll be having (I think) I just took Neurofen.

Hope this helps mate!

Take care,

Kelly
-x-

Hi Tracy. Yes I am ok thanks. Been to see oncologist this morning so a little further down the line. I am having 4 Epi and 4Cmf, I have a problem with the scar being infected so the chemo has had to be delayed till 6th August. I tested positive for tamoxifen and herceptin. I am struggling a bit with the terminology of it all so intend to do a bit of studying tonight, just read Kellys post to you and its really helpful. Then i intend to have a very large glass of Wine!!! Glad you have your treatment plan sorted too, its such a relief to know that the waiting game is over.
I will stay in touch
Take Care
Love
Jillianxxxx

Re the mouth ulcers (if you get them - you may not) I initially bought a regular over-the-counter one, which was no good. The one that is effective is DIFFLAM, which you can buy from the chemist, but I got a 2nd bottle free from the hospital (I heard about this on one of the bc websites, so straight from those who know!)
Hope this helps and good luck

Alison

Hi there ladies,
Sorry for the delay in responding. I went back to work on MOnday for two weeks until the chemo starts as it gives me something else to think about.
Jillian - I am so glad to hear from you, was getting worried. I haven’t had the results from the Hormone or HER2 but he didn’t care as it didn’t affect my treatment. You will still only be 6 days behind me so stay with me!!! We will drink wine - chat - cry - whatever, together!!!
Sunny - cheers for the advise, I now have my own chatline nurse - you may regret saying that I could ask you questions (I can be a bit of a questioner), sometimes I should go with the flow!!!
Thanks to all for the advise (which I shall take onboard ALL of it), I will kit myself out with babybrush, shampoo and mouth wash - very handy hints. I am not sure what I would do without this site and all the support, so THANK YOU ALLLL!!!
SENDING LOTS OF LOOOOOOOOOOOOOOVVVVVVVEEEEEEEEE xxxxxxxxxx
Tracy xxx
speak soon,

Hi Tracy,

just to let you know as I’ve mentioned this to you before, the RAF have kindly agreed to post my OH from a base which is 2 hours away where he has to live mon-fri to one which is just 10 mins from home. Hurrah!!!

Its really quite good of them as we’re not married so they didn’t actually have to. He’s always been given time off to take me to my chemo and other appts but apart from that we have lived apart during the week. Its been hard on both of us living so far apart whilst going through all this.

Anyway, the RAF has come good and I am thrilled. Finally some good news at long last!!

Hope work is going ok, take care and be sure to keep in touch

Kelly
-x-

Hi Kelly - have replied on the other thread - sorry.
Must sort these out!!! I keep forgetting what I have done!!!
Tracy xx

Hi Tracy. Great to hear from you! Glad work went well, nice to have a bit of normality. I had a visit from Breast Nurse yesterday and the oncologist has arranged a CAT scan tommorow for me, get results on Monday, spoke too soon about the waiting game!! But at least its not a long wait. I have a autoimmune disease called Schleroderma, diagnosed last year, so he said that my chemo may be a bit sporadic, and he may have to reduce the dose at times if Im not tolerating it, as my immune system isnt up to the mark at the best of times, but hes going to give me a injection each time to increase it. He is very approachable and easy to talk to which Im happy about. Next week I am going about a wig, trying not too think too much about that one!!! Mines been thinning for a while so it will probably be a major improvement!
Take Care Tracy and I will let you know how my results go on Monday.
Love
Jillianxx

Dear Tracey,
Thought I’d let you know I am on arm 4 of the trial and its going really well! My side effects have been minimal (no really!) and nothing that anti-sickness & painkillers haven’t sorted out very quickly. It’s great to read that you are so positive - I think that really helps. One bit of advice I took to heart and I’m glad I did was to rest in the afternoon if you can. This seems important especially as you are on treatment every 2 weeks for the Epi’s and your body takes quite a bashing. I tried to do too much and then I thought I’d follow the advice and feel loads better in these last few weeks!
best of luck and keep yer pecker up!!
Love victoria

Hi Victoria,
Thank you for replying. It is the first time I have heard of someone else on arm 4 - was starting to wonder if it really existed. I think you are right, I will need to take things easy in the afternoons - I hate sitting around but will take your advise.
So glad you are feeling ok. I think I can deal with the sickness and pain if I pop the pills!!! Did you lose your hair quickly? I am using the cold cap which I have been told is not pleasant, but I have to give it a go. It may not even work, but you know what - it can’t be any worse than what we have already been through.
I will keep in touch and let you know how I get on, sending lol - Tracy xx

Hi Jillian,
Keep looking for you on the site as we are about par with our treatment. Glad you are ok - hadn’t heard from you and was getting worried. I don’t have the same disease as you but I have pernicious anemia which is a B12 difficiency. I have monthly injections to combat my tiredness - great eh!! The onc has said they will take control of that during the chemo and rads as he will need to monitor my levels. We have more in common than we thought.
I will be thinking of you, keep in touch,
sending lol, Tracy xx

Dear Tracy,
I lost my hair after the second treatment. I’d originally said I’d try the cold cap treatment but decided not to mainly because of the extra amount of time you have to spend at Oncology before and after each treatment. Lots of women say that its certainly worth a go - so why not? It’s probably worth a try at least. If you do lose your hair, although it was something that I was quite worried about, oddly enough it really doesn’t worry me too much at all…baldness is a badge of courage!!! Your first treatment is the day before my 4th (and last of the Epi’s). Let me know how you are, I hope that this week doesn’t drag too much - I expect you just want to get on with this now don’t you?
lots of love Victoria xx

Hi Tracy
I’m also on arm 4 of the TACT 2 trial and have my 4th and last Epi on 24th before starting on the 4 cycles of Xeloda tablets. I haven’t suffered too badly at all on this treatment apart from a couple of mouth ulcers and a bit of constipation - but as other ladies have said the hospital will give you something for this if needed. I have used the cold cap and still have a reasonable covering of hair. It has thinned somewhat with a handful coming out each time I comb it but there aren’t any bald spots yet!! So from my experience I would certainly give the cold cap a try.

There are also some great hints and tips on this site regarding hair care should you choose to try the cold cap, such as drenching your hair in conditioner before the cold cap is put on and only washing your hair once a week etc

Best of luck.

Carolx