**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Welcome fifi though sorry you have to be here. If it's any consolation I found Fec much easier than tax so you might be getting the worst bit over first. How is your hair ? I cold capped but lost most of if and found it really tough. I didn't work either, as a teacher I couldn't because of the germ risk but both physically and emotionally I wouldn't have been able to either. Make the most of your good days and plan some nice trips out, cake and coffee etc! And I found box sets helped me get through though sofa days.

Bosh have a lovely pottering day !

My spreadsheet of cancer. It sounds like a black comedy.

It's helping me to picture you all (more the comments section though, than the stage of disease!) and to make sure I don't keep asking you inane questions you have answered to me before!

I have a question which maybe you won't be able to answer as it will depend on what treatment plan I am put on to etc., but generally how do the phasing of chemo work? Is it generally 1 month or 3 or 6? During those months, do you go into the hospital for an hour or all day? How many days in a row etc?

I'm essentially trying to work out the logistics of carrying on my work whilst having it (and radiotherapy - is that better or worse? Same kind of timeline etc?) I work from home, in Italy, but for a UK company, so when I travel over to the UK for chemo, which I will have to do I think, will I be able to work in the London office or do you basically have to sign yourself off work for the whole treatment phase? How has that worked with your work - have you all been on full pay?

Again I know I am jumping the gun - I need to wait to hear what my treatment will be, but I have a busy 3 or 4 months coming up with work so am trying to work out where/when/if I will be able to carry on in a reduced capacity, if you see what I mean...

Hi boobz, I can't help with chemo info but I think radiotherapy seems to be fairly standard and you probably know some of this so apologies. I had 15 sessions, that's every weekday for 15 days. You get weekends off. A few have had more than 15 for various reasons.

Once you are in the treatment room it takes about 5 minutes each day, but you have to factor in the travelling time to your hospital and possible delays in the waiting room, they have huge numbers going through each day. It's not painful, just boring. There are some side effects including burnt skin for which many of us ordered an Australian product, wonderfully named Udder Cream, which certainly kept my skin comfortable. I had quite a lot of local pain by the end but that's rare and it made my scars go a bit peculiar but agian, that's not usual. You get tired by the end, but I'm not sure if that's the cumulative effect of all the travelling or the treatment. People certainly work through rads, but less manage it through chemo.

Rads tends to be last in the list if treatments and there are guidelines about how soon it should be after surgery or chemo. I had surgery at the end of May and rads for three weeks in July.

Once you know your treatment plan you can get your head around the logistics. I am only guessing but you probably need a few days in the uk around each chemo session. Do you have somewhere to stay?

I will be taking dd driving again later. DH claims that as he has driven an automatic for years he would be useless with dd in my manual car. Doesn't stop him borrowing it regularly to go to the tip!

Thanks Mrsr - that's really helpful. I shall add Udder Cream to my spreadsheet.

Yes I have LOTS of offers of places to stay. We actually own a house in London but it's rented out at the moment so that isn't an option. I have my best friend who will have me, my DH's vair rich uncle who lives just off Oxford St in a penthouse apartment (there are worse places to have chemo overnighters I suppose!) and lots of other friends who would have me. I'm just not really a very good "ill" person - I am very rarely ill, so when I am, I am miserable. Especially if I can't exercise. So I think I might not be that fun a part-time guest.

Good luck with the driving lessons! DD1 is only 6 so I have a while off worrying about that yet thank god!

but generally how do the phasing of chemo work? Is it generally 1 month or 3 or 6?
One session every three weeks - allow a good half day. Week 1 ... feely yucky; Week 2 ... feel better; Week 3 ... feel a lot better.
You will find that you will get more tired as the sessions progress.
And the SEs depend on what type of chemo you have: FEC seems more likely to make you feel nauseous, but Tax is known as "being knocked down by the Tax truck" for good reason.

Fifi I also have lobular breast cancer but it had spread so now have secondaries in bones and am plodding on with treatment (oral chemo at present). I had six rounds of Tax (supposed to be 3 x Tax followed by 3 x FEC but Oncologist decided to change it to all Tax). I managed to work part time in Weeks 2 and 3 of each cycle as well as work from home on days I didn't go in to work (have 2 hour commute each way into London).

hi malteserzz you were brave going with the cold cap - I was put off it by the oncologist! mist of my hair has gone now though I still have a little bit. I got it shaved off eventually as I was so fed up of hair getting into everything and when my children started finding it in their mouths I thought it needs to go I'm not sure if the rest will fall out or not.

boobz if you have to have chemo (you may not) I think it depends on the drugs you have. as I said up thread I'm in T - FEC and I've been told that the Taxotere ( or dosetaxol) is one of the worst chemos for just making you feel really grim. Like being hit by a truck as Lilymaid said. For me after both doses that I've had so far I was tired and achy for 2 days after chemo, then spent 2 days wanting to die, then gradually felt better over the next few days. Week 2 and 3 have been ok but I get very tired quite quickly. I suppose if you have a job which isn't physically strenuous you might be ok to work after a few days off for each chemo. Hope you get a plan soon - the waiting is awful isn't it?
Lilymaid can I ask how you found the bone mets. I'm a bit paranoid about the possibility that mine has spread elsewhere but the consultant said they don't routinely check for spread at this point. I'm having chemo now, followed by surgery in the summer, then radio after that. I'm just scared it's elsewhere and I don't know!

Thanks Lilymaid... I know chemo affects everyone differently, but long after the chemo session do you think I would be ok to fly back to Rome... Say I flew in on a Sunday and had the half day chemo at the hospital on the Monday - when do you think I could fly back home? Tuesday afternoon?

And how many months of this 3 week rotation? Or does it just depend?

Sorry, I know this will all be explained to me eventually, I am just trying to make some arrangements with work cover, and the sooner I know, the more likely it will be less disruptive to my colleagues and clients.

*how long

Fifi My secondary cancer was found soon after diagnosis. I had a CT scan and nuclear medicine bone scan as well as some X-rays and it was then confirmed. I presume that the Oncologist organised these because of the lymph node spread and the fact that I had chronic pelvic pain in the months before diagnosis. At least I got the double whammy shortly after being diagnosed; it would be very hard to go through treatment and then be told that you have secondaries and that treatment will continue indefinitely. All treatments for secondary cancer are described as palliative as it is incurable, which is a bit of a shock when you see that written down.

Say I flew in on a Sunday and had the half day chemo at the hospital on the Monday - when do you think I could fly back home?
Boobz Your oncologist would probably say that you really ought to stay put in one place after chemo. This is because you could get a raised temperature and would then need to get to a hospital to be put on an antibiotic drip immediately. So, I would discuss it with the Oncologist/nursing team who would probably prefer that you were close to their hospital all through.
There seems to be some difference in the treatment pattern with chemo. I had no drugs before chemo but then had two days of steroids immediately after. This meant that I felt quite reasonable for the first 48 hours, then went into a pretty rapid dip thereafter. Other people have steroids before chemo and the chemo effect will hit at a different time. It may also depend on how much chemo you are given ...

Hello fifi sorry you have to be here but glad you have de-lurked. Your description of the chemo experience sounds very similar to mine. I did manage to work, 2 weeks out of 3, throughout but from home and very flexible and reduced hours. I didn't have to but I wanted to and it did make me have a reason to pull myself together some days. It did get tougher as the sessions accumulated. Did you have node involvement? I had bone and ct scans as standard before treatment. I still have inconclusive findings on my lungs, liver and spine, which my oncologist is prepared to sign off if they still haven't changed after my next scan. My bone scan was clear.
boobz everybody reacts differently to chemo, personally, I was always fine for 2 days after treatment (6 x tax) and would have been fine to travel at that point, others have really struggled as soon as they leave the clinic. I think that lily is right that you will need some sort of medical supervision in Italy, you will need specialist assistance if you get an infection. Most people seemed to have had 6 treatment cycles, there are a few variances but this seems to be standard, followed by radiotherapy. I had my BMX before treatment but this seems less common with most others having it at the end.
Must be a nightmare trying to organise across countries.

Thanks both - yes I am getting a bit worried this is going to get difficult and complicated trying to sort across 2 countries, but I will have to find a way, as I can't just go to the UK for 6 months or whatever without my family.

Hm.

Boobz is there another clinic/hospital near you in Italy that you can do your chemo at? I know you are unhappy with your present team, but a transfer to another place might me less stressful for you rather than flying back and forth?

Sorry I haven't caught up on the whole thread so apologies if I miss people out. Welcome to all the new folks though, sorry you've had to join us but it's a good place to be.

As we're sharing stories, here's mine! I was told from the outset that I had to have surgery, chemo, rads and a year of Herceptin, the only choice was whether to have surgery first or after chemo. If it was first it would have been a mastectomy as the tumour was very large ( a downside of her2+ cancer is that it grows fast and spreads fast. The upside, provided you can tolerate it, is that Herceptin is a fantastic drug in stopping it coming back). I went for chemo first to shrink the tumour and so I ended up with a WLE and SNB a few weeks ago.

I had 4 cycles of EC every 3 weeks and was then to have 4 cycles of paclitaxol every 2 weeks (I only had 2 in the end due to nerve damage). I felt sick within 3-4 hours of having the EC and was knocked out for a good week (10 days after the 4th cycle). I did manage to work for a week or so between treatments. With the paclitaxol, I was ok ish for the first 2 days and then felt like I was being crushed in a vice for the next 4 days.

So as everyone has said, it's totally down to each individual. I have heard of some ladies on FEC who have had no side effects at all! Your biggest risk I agree is that of infection, particularly I would have thought whilst flying. However, your immune system is at it's lowest in the middle week I think so if you I can get home before then it might be ok.

As to me, well DDs cough is drying up so that's good and she enjoyed her birthday at the weekend. Unfortunately, last Friday my MIL - who has been our rock these last few months - fell and broke her hip. She had a hope replacement on Monday but is likely to be in hospital for another week. Buns your have my sympathy, it's tough having parents to look after.

Unfortunately FIL is not great about the house so I can see my weekend being cooking, cleaning and washing for him. Why do these things all come at one.

Anyway, need to go and cook our won dinner now! Hope I've been able to help

Hip replacement, not hope!

thanks for your comments buns. Yes I have lymph node involvement. I think I'll ask again about a ct scan at my next appointment.
Thanks for the welcome everyone!

I have just found out my bones are thinning! I am going to have to eat tinned oily fish. Grim.

Boobz - I know you are trying to organise things but you need to wait for your treatment plan before you book your flights! You may not even need chemo. I don't think the flying backwards and forwards thing is going to be the best plan.

Welcome Fifi. The tax made me very tired too. I didn't work either as wasn't allowed in school because of infection risk but not sure I would have been able to really. Lily summed it up with her weeks.

Trice- that's rubbish. I hate fish so I wouldn't be any good at eating oily fish! Is there anything else you can take?

Minty sorry to hear about your MIL. Hope she makes a reasonably quick recovery.

Boobz I was supposed to have six lots of chemo and then ended up with eight so things change as you go along and with how you respond. I wasn't great with the chemo but it did a good job. as someone said earlier they might not be happy with all the flying because of infection risk but hopefully you will get your plan soon and then you know more about what you are dealing with.

It's been ages since I have posted but I am trying to keep up to date with the thread and think of you all often. The DC are off school and DH's work has got insanely busy so I am on child and housework duty as well as trying to do my office job. At least I am feeling fit and well - running more than ever, slowly losing my chemo weight, enjoying the sunshine

Fifi, I also had lymph node involvement and because of that I had a CT scan, bone scan and then some subsequent MRIs to look in closer detail at my spine and liver. Thankfully all clear. I was led to believe that they do this further investigation as standard if there is lymph node involvement so I would ask about it if you can, just so you know if you have any additional testing ahead of you.

Boobz, I'd second what everyone else here has said about chemo. I worked one week in every cycle but I was tired and also very emotionally up and down. After each treatment I was usually fine for a few days before it really hit, then 3-4 days of feeling like I was about to die, then gradual recovery and lots of sleeping. I'd say not to make any concrete plans at least until you have got going and know how you're going to react to the first cycle. Then if you're switching drugs halfway you'll have to do the same again. Certainly tax affected me very differently to FEC. Similar to you, I wanted to be able to plan and found it very frustrating, but one thing cancer has taught me is not to plan too much - no one knows what is round the corner. I also got cross not being able to do as much exercise, but I did still go for short jogs on my good weeks so you may also be fine.

Lots of love to everyone else. Minty, so sorry to hear about your MIL. Buns you have your hands full with your parents too. I hope everyone has a nice restful Easter weekend planned.

minty sorry to hear about your MIL, I think you had enough on your plate with a poorly DD. Life is a bugger sometimes. If your MIL is a straightforward case they will have her up and walking quite quickly but she will need a lot of support and it can have a real emotional impact as they lose confidence. I'm back at my parents today but the cavalry arrives in the form of my brother and GF tomorrow so I can spend some of the Easter holidays with my DDs.
trice was has caused your bones to thin and how did they find out? Poor you (although I quite like oily fish!).
elporto your dedication to exercise has always impressed me. I used my BC as an excuse not to do anything that might work up a sweat for the whole of 2014. I am enjoying getting fit this year.
Here's hoping the weather improves for the weekend.

Welcome, and sorry to see you here, to all newbies.

My chemo experience was that the 4x FEC (every 3 weeks) floored me, I felt awful for the first week, then not so awful for the second and then a little bit awful just in time to be zapped again.

I then had 12 weekly Paciltaxols and, other than getting steadily tireder, was fine - in fact, it was such a relief not to have the sickness that I'd had with the FEC, I felt relatively normal again.

I couldn't work as I was in a school.

Thanks everyone for sharing your experiences, I really appreciate it. I know flying backwards and forwards is not ideal, but the alternatives are hard to work out at the moment. I guess I will just have to wait and see - and as Trice said, I might not even need it... (but think I will somehow..)

So today is supposed to be the day I get all the biopsy results back from the UK doctors and a phone call around 6pm to tell me grade, type, hormone receptor status etc. But the surgeon operates all day on Thursdays, and then it's the bank holiday weekend, so I wouldn't be surprised if the call gets pushed to Tuesday.

Either way I think I will be flying back in next week for either the sentinel node biopsy or surgery or both. I still have a lot of reading to do - have been trying to read up on everything BC related before that call tonight but also have a work deadline for today as well.

Life is just going so brilliantly everywhere else, it's like the calm before the storm. Kids are doing so well at school (they go to the Lycee here in Rome), DH just got an amazing appraisal at work which sets him up for promotion, and I am also doing well at work. I am the healthiest (apart from the cancer!) I have ever been - working out 7 days a week and able to do pull ups Linda Hamilton style! And we have so many lovely holidays lined up, as well as weekends at the embassy pool (DH is a diplomat) across the sticky Roman summer... I just can't believe it's all about to be tipped up in the air with treatment and uncertainty.

When did everyone tell their friends and family? After diagnosis or when treatment began?

Sorry, I have another question.

A little in the vein of "what did you wish you had done one last time before the baby arrived?"... and I would say a massive lie in with breakfast in bed and the Sunday papers followed by lots of sex and then friends in a pub and then a movie at the cinema... or similar....

...is there an equivalent before getting on the surgery/treatment bandwagon for cancer? Is there something you wish you had done before it all kicked off? I am thinking something like a big night out wearing a LBD with all my friends, getting dolled up to the nines and looking hawt for a brilliant photo? Or am I just trying to capture the present and I just need to square up to the future instead?

I dunno - I feel like it's all about to change, and I want one last spin with my un-treated body or something.

Boobz I hope you get the call today think we all felt better once we knew exactly what it was and what the treatment plan would be. I told everyone straight after being diagnosed but everyone is different
I know what you mean about everything going well beforehand, I felt like cancer was my punishment for everything else in my life being good which is a bit daft really !

Big night out sounds a good idea but remember though this will change you, you will still be you and be able to go out and enjoy yourself, go on holiday etc.

Trice sorry about your bones could you take supplements instead if you don't like oily fish ?

Have just booked a big holiday for the summer which is exciting but scary as we all know things can change quickly and I'd hate to have to cancel again, have told dh he and the kids must go even if I can't

Boobz I would go for a magnificent meal or two and plenty of sex. If you have chemo it b**rs up your sense of taste (for wine in particular for me) and your appetite generally. And you are more likely to get infections like cystitis which mess up your sex life - as well as feeling too tired and uninterested!