Just had 1st Epi on Friday and hardly any side effects. Holding my breath waiting for something to happen?
How have other people coped with the accelerated Epi? And how are you on Xeloda?
The good thing about this arm is that I’ll be finished in November. Of course, then it’s 15 rads + 5 years Arimidex.
Mal
Hi Mal
I’m approaching the end of Arm 4 of the TACT 2 Trial. I finish the third cycle of Xeloda tomorrow - the fourth cycle begins on 5 August. Two weeks of the tablets and then that’s it for the chemo.
My experience has more or less okay all the way through. Because the epi is accelerated, the process was incredibly quick - I couldn’t believe it when I got to the end of that part!
Looking back, I think the main thing for me was to learn the pattern for each cycle. My epi was given to me on a Monday afternoon and I was fine until the Wednesday. From Wednesday to Sunday on each cycle I was always spaced out and quite tired. I still managed to do things but felt as if I was seeing at the world through a looking glass. I never felt sick at all. The steroids kept me awake at night so I always ensured I took the lot by about 1.30 pm!
The second week was when the other side effects kicked in. I usually developed some tongue ulcers on the Sunday just as the second week approached. On the Wednesday I got foot blisters (an unusual side effect that happened every cycle and something I’ve never had a problem with before), and some rumbling back pains generally happened on the Friday as I came to the end of the cycle. By the final cycle I was fed up with these side effects, but overall I felt pretty well during the second week.
I lost my hair at the beginning of the second cycle. I’d had it cut very short so it would be easier to cope with hair loss. On the Monday night I started moulting and on the Friday night most of it came out. I stood at the bathroom sink and just pulled the lot out so there would be no more hassle. During the second week of Xeloda, I lost any final bits of hair that still existed and then all the new hair started to grow again. I now have a decent bit of growth on my head. I’d kept my eyebrows and eyelashes throughout the epi, but as soon as I started the Xeloda, out they came. They grew back immediately and I now have some extra thick eyelashes - 3 for the price of 2 I think!!
The Xeloda has been a totally different experience to epi. I’ve managed it well and have had no sickness at all. The only problems I’ve had are with the hand/foot syndrome. My hands are way too dry and my feet peeling. I use Udderly Smooth for my feet which works okay, but it doesn’t work for my hands. My clinical trials nurse did discuss with me the possibility of reducing my dose for the final cycle should my hands get too bad, but I’ve decided I can cope. I was given a prescription of Vitamin B6 which has helped. I get more tired than usual, but have managed a sort of slow phased return to work. I go back to work full time in September. But really, the Xeloda has been a walk in the park for me although others may have different experiences.
Very best of luck to you! I honestly think this is a good arm of the trial to be on and hope you manage it well.
Take care
Gill
Gill
Thanks for the reply. My first week looks as though it will mirror your experience. I was fine over the week-end but today have been tired and spaced out. Sense of taste gone too. Feel as though I can’t walk a straight line.I hadn’t thought of side effects during the second week, I thought they would mainly be confined to the first. But the big plus is that the epi will be over and done with very quickly.
Did you find that the side effects were worse with each cycle or much the same?
I’m off to get fixed up with my wig tomorrow. Strange I’m not really bothered about my hair but eyelashes and eyebrows are a different matter.
You seem to have found Xeloda OK, just hope I can say the same.
Are you planning a celebration when you’ve finished? Are you going onto hormone therapy etc?
Mal
Hi Mal
How are you doing today? Take it easy if you’re still feeling spaced out.
I remember the feeling of not being able to walk a straight line - my spatial awareness for a few days was dreadful. The good thing though is that it is only for a few days. For me, on the Monday morning, a week after the dose I would wake up bouncing again. Everyone’s different so you may not get any side effects during the second week, but if you do, they are manageable. I found that because my head was back in gear things weren’t too bad.
I didn’t suffer from the horrible taste in the mouth but was told by the hospital that pineapple does wonders because it contains certain enzymes.
The side effects were exactly the same each cycle so I was able to manage them better as I went through the treatment. I got fed up with them though, particularly by the 4th cycle. The first time they caught me by surprise, but once I realised on the second cycle that they were being replicated, I sought out ways to manage them. For instance, instead of using Difflam for the mouth, the hospital gave me a prescription for Orabase Paste to put on my tongue - the best thing ever for mouth ulcers. I found which blister plasters are the best etc. The accumulation was with the tiredness so I just slowed down for a bit and decided some DVD days were perfectly okay.
Before you know it, the epi will be over which is a real relief - the speed of it all is amazing.
Good luck with getting your wig. I got 4 wigs, all of them different. Not one of them is like my real hair! I decided to use the time without hair to experiment with different lengths, styles and colours which was fun and it‘s something friends have been able to join in with. My hairdresser has agreed to match some of the colours for me once I’m able to put colour on my hair again.
I was worried about losing my eyelashes and eyebrows too. It’s weird how I kept them all the way through epi and during the second week of Xeloda they came out. The good thing though was that they grew back immediately. My body seems to have decided to remove all the old hair (literally) in order for the new hair to grow.
When I finish I’ll be celebrating with friends - can’t wait!! It’s so close now. After this I go onto Herceptin which I’ll be starting in the Autumn. I’m joining the Persephone Trial so will have Herceptin for either a year or six months. I will also have Tamoxifen and there’s the final reconstruction to go through.
When I started on this journey, it felt like an impossible mountain to climb. What I’ve learned is that each step is doable.
Hope today has been okay for you.
Take care
Gill
Thanks Gill
Feel a bit more like my old self today although still a little spaced out and have a really sore throat. No temperature though so I’m OK. I’m glad I’m on Arm 4 though. The cycles will fly by as you say. The girls at work took me out for a meal before I started chemo and were asking where we’re going to celebrate after it’s finished, I told them I’m going to book the Albert Hall!!
Yes, it’s really strange how you learn to cope with whatever is thrown at you. Like you when I was first diagnosed I thought that was it, but gradually you learn to cope and start looking forward again.
I took my daughter with me today for my wig and we had a good giggle. It’s nothing like my own hair so have been wearing it in the house and trying to brush it into different styles, but it doesn’t react like ‘proper’ hair. I’ll get used to it. Did you feel conspicuous when you first wore yours? So glad the eyelashes and eyebrows grew back quickly. Hope mine do too (not bothered about legs etc though).
Are you planning a holiday after all this?
Mal
Hi Mal
I’m pleased you’ve felt a bit better today and hope the sore throat disappears. I can’t stand all this checking of temperature … having said that, I bought a thermometer but have never taken it out of its packing!! Woops!
How wonderful of the girls at work to take you out for a meal. I think the Albert Hall sounds a great venue to celebrate … there’s plenty of space to get some good musicians!!! If only eh? With the speed of this part of the trial, you’d better start booking things now!
I was devastated when diagnosed and all over the place. If anyone had told me last November that I would be diagnosed and cope with the treatment I would have said ‘no way’! But I think we really do learn to cope - it’s remarkable how our bodies and minds work.
Enjoy playing with the wig. I did exactly what you’re doing ie. wearing the wigs in the house first. I did a trip down to Waitrose in mine before losing my hair and was really conscious that I wasn’t looking my normal self. I watched carefully for reactions but didn’t get any. I was terrified of the wig blowing off. Once I lost my hair it took a couple of weeks to get used to the wigs - but even now I freak out when the wind blows strongly. What makes me laugh now is that I get compliments in the street … how ridiculous is that? I have beautifully shiny hair (nothing like my own) and get comments. The other day Friends of the Earth were campaigning and twice I got stopped by them and asked where my partner was!! Too funny!! If only they knew what was underneath!!
I’ve not booked a holiday but am planning lots of days out with some friends. I hope to manage a holiday at Xmas.
Mal, I hope you continue to do well this cycle - I’m sure you will.
I hope your sore throat clears quickly and that you have a good day tomorrow!
Take care
Thanks for your reply Gill
I’m feeling much better today - human again. I’ve been away for the week-end with a couple of the grandkids to our caravan in North Wales.
Can’t help but notice your other thread about the Tact 2 trial and worry about Paula. I’ve also noted that Xeloda has not had great results with HER2 + and wonder why Paula was placed on that trial. Were they trialling everyone? Is that significant? I’ve also noted the different treatment from different NHS trusts. I consider myself lucky that I’m being treated by Christies despite the fact that I have to pay for medication. I could have opted for treatment at a local hospital but Christies is renowned throughout the country and travelling 1 hour as opposed to 15 minutes doesn’t really figure in the equation. I feel that I’m getting the best. And that really matters - doesn’t it?
I really feel for these young girls. I don’t know how you’d cope with young kids. It’s bad enough being 56 paying into a pension fund for nearly 30 years and worrying if you’ll have any retirement to come in the future. I worry about seeing my grandkids growing up but if, I was younger, and it was my own kids, I don’t know how I’d react. It must be really dreadful. My heart goes out to them.
Mal
Mal
Hiya Mal, if it’s of any help to you,I am keeping a diary of my wifes treatment on here (tact 2 arm 4 diary) I am only entering info when required because pointless telling people about the goodish days …and there are some ;o)
She has just has her 2nd session last thursday so pretty close to your own treatment. Sadly there’s no set patterns,everbody symptoms differ and its a case of understanding the problems YOU experience and then putting things right next time. Not bothered looking into Xeloda yet but shall after the epi finishes. Best of luck. John
John, I’ve read your diary - good luck to Sue. It’s not easy facing chemo but I hope she manages as best she can. As you say, we’re all different and each have our own experiences of this horrid treatment! By the way, Xeloda is so much easier than the Epi!
Mal
I hope you really enjoyed yourself in Wales - it’s so good to take time out to do enjoyable and normal things.
Thanks for picking up where I’m at regards Paula - I really appreciate that. I’m totally devastated about what’s occurred for her. We’ve never met although were due to meet last week, but were doing the same trial under the same clinical trials nurse - we were literally a few days apart from each other throughout treatment so have been comparing notes. To learn of her experience has been absolutely mind shattering.
I really wonder why she was on the trial. She’s not HER2 which is fine for the trial, but has a Triple Negative diagnosis. I’m utterly staggered that for someone with Grade 3 cancer and 2 nodes involved that she was never scanned to see if there had been spread. Furthermore, I genuinely believe that there should be different types of chemo used. I’ve no idea unfortunately as to what’s clinically tested as to how triple negative cancer responds to the treatment we’re on. I recall my oncologist telling me very early on that the hospital use E-CMF as their gold standard treatment for early breast cancer. There was no mention whatsoever of the Taxanes for example. Now that might have just been about me … but I wonder!
Like you, I really feel for the young women here. I’m 54 which is still young enough, but at least I don’t have small children to worry about. My sister in law died in her 30s leaving two small children back in 1985 - as long as I live I will never forget how that felt for everyone involved. The emotional pain my sister in law went through was dreadful. To see Paula and others go through chemo with small children breaks my heart. It’s truly heartbreaking to see young women facing breast cancer so early in their lives. I hope more than anything else that Paula will be okay … I think about her constantly.
The Christie has such a good reputation and I’ve no doubt you’ll be getting the best of care. I think you made the right decision to be treated there. I’ve lost faith in my hospital but need to keep on with them for the moment. I’ve decided that should I ever have a recurrence of cancer I’ll go straight to the Marsden. Meanwhile I’ll stick with my hospital for the Herceptin and Tamoxifen or whatever they’ll give me.
I had a very good experience with them today and have had my Xeloda dose cut for the last cycle. They’re concerned about the state of my hands and feet (my feet particularly). I’m very comfortable with the decision.
What was interesting though was that there was nothing forthcoming about seeing my oncologist at the end of my chemotherapy. I’ve demanded to be seen and checked so they’ve now given me an appointment. I refuse to allow a situation whereby everything is so delegated I have no contact with the oncologist. He’s good (a different oncologist to Paula’s) but I really believe the hospital is pushed to its limits. I worries me a lot.
I hope you’ve had a good day and have benefited from the break in Wales.
Take care
Gill
Oops … forgot to say that I’ve organised my finishing chemo celebration. We’re booked onto the Orient Express which will take us to Cambridge and Ely … fine food, champagne etc. Wow!!
Hi Gill
My chemo brain! I meant to say in my post that Triple Negative does not repond well to Xeloda. That’s why I couldn’t understand Paula’s situation. Have you read the thread ’ Triple Negative ask the expert conference’ started by JaneRA? Like you I find it hard to comprehend the differences in standard treatments between Trusts/hospitals. The need for scans etc would seem obvious when positive nodes are involved. I had 3 out of 24 involved and was given a lung X ray and should have had a CT scan before starting chemo. The scanner was broken on the day of my appointment and it has been re-scheduled for this Wednesday.
I assume you are also being treated at Brighton. There’s another girl (well 54) posting on here who is being treated there, dx 1999, recurrence in other breast 2003, and now secondaries in bones, liver, lungs & pleura. She’s just had her 2nd Epi having had no previous chemo treatment and is left wondering ‘what if…’
I can’t believe that you don’t automatically see your oncologist every visit. It certainly happens at the Christie.
Unlike you I have no ‘experience’ really of BC. It must have been heartbreaking to watch your sister-in-law like that. I have a colleague (38) and my son’s mother-in-law (60ish) who are both NED 3 and 5 years on. They were both treated at the Christie and I find it really helpful to talk to them. When I was first diagnosed in May I knew nothing about BC but my coping mechanism was to trawl the net and find as much info as I could. It certainly helped me.
Is there any more news of Paula yet?
Nice one - Orient Express!!! I’m sooooooooo envious.
Mal
Hi Mal
Yes you’re right, I am being treated at Brighton. I don’t tend to read all the threads here so often miss who comes from where! Hmm … it must be awful to be in the position of questioning the ‘what if’ regards not having chemo previously. That’s so hard.
Thanks for drawing my attention to the Triple Negative thread - some very interesting information which raises the same questions. All Oncology departments in hospitals should be up to date - there’s a strong research ethic within the Sussex Cancer Centre (the posh words for describing our Oncology Unit at Brighton) but in light of what happened to Paula, it’s hard not to question how effective this is for perhaps some members of staff. I could of course be totally wrong on this. But for a research centre it’s astonishing that scans are not given automatically and treatment geared more for the individual. Having said all of that, when I see my oncologist (different one to Paula‘s), he does seem to know his stuff . I constantly go back to the notion that the staff are stretched to their limits.
I’m really pleased that you’re having scans and hope your CT scan today works out well for you. Good luck with the results. The Christie seems to be a good example of what should be happening and have a very good reputation nationally. It’s so encouraging to hear about your colleague and son’s mother in law - it must be really helpful for you and confirm that you’re in good hands.
Like you, I’ve trawled the net for info as and when needed. I’m always careful about not taking things at face value but have found some excellent info which helps when dealing with so many unknowns. Ultimately though we’re all having to deal with so much info and yet so little real knowledge about the causes of our cancers and what are the right or wrong decisions about treatments and lifestyle choices.
I’ve not heard anything about Paula recently - I sooooo hope she’s doing okay.
Good luck with the CT scan today.
Gill