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Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

992 replies

foofooyeah · 17/07/2014 18:38

Grin

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

OP posts:
Lilymaid · 28/07/2014 22:00

Welcome Briteside . Hope you'll get lots of support on this thread. It is all very scarey at first, but you will find that once you have the full plan, it is easier. Treatments aren't fun but are manageable and you will be back running!

Speedypenguin · 28/07/2014 22:07

Welcome to the thread briteside, it's a friendly and wonderfully supportive place to be, although sorry you find yourself here. Rough days when you first find out are only to be expected, as is the emotional turmoil. Basically, however you want to/do feel is allowed. Once you have a plan you will probably feel more in control. I found the first couple of weeks the worst.

There has been wonderful advice on here and in the previous two threads since I joined (about telling children, coping with chemo etc). Ask anything and someone will come along with some words of wisdom or a hand to hold.

I would like to add something more constructive but have recently had my chemo so am not thinking that clearly and need to hit my bed. Will check in again tomorrow but didn't want to ignore your post. Big hug from me.

elportodelgato · 28/07/2014 22:08

Welcome brightside, I am also new to the thread having been diagnosed 3 weeks ago. Since then I have had every test you can think of to check it hadn't spread (it hadn't) and have also had one breast removed and reconstructed and lymph node removal. Am currently home recuperating. My DC are also young, aged 3 and 6. And I also used to be a runner, and will be one again Smile

I have had insanely amazing support here and you will too xx I can only repeat what everyone said when I first joined the tamoxigang - the stage you are at now is the absolute worst, but these ladies are fabulous at hand holding. We're here for you, keep posting.

briteside · 28/07/2014 22:08

Thanks Lily. It all seems overwhelming in the beginning, doesn't it!?

weebarra · 28/07/2014 22:15

Welcome briteside, sorry you find yourself here, but you will find this thread very supportive. We're all at different stages in treatment, so you'll generally always find someone who knows what you're going through!
I'm pretty much the same age as you, and also have a six and three year old (as well as DD who is one next month). I've just completed treatment which went along the same lines as you. It's not pleasant but it is doable!
The beginning bit is a whirl but things do feel a bit more straightforward once you have a treatment plan.

briteside · 28/07/2014 22:31

Hi all, thanks so much for your quick response. (Sorry I added a random response to Lily in there - typing at the same time as you!)

speedy so good to know that these first weeks are the worst. I thought it would be easier when the initial shock of the first day or two settled down, but it is not the case...

elport Sorry you are also at these horrid early stages..but so glad it hasn't spread for you. How are you recovering from the surgery? Good to know that someone else will understand when I moan about getting itchy feet!

weebarra Interesting to hear that you have similar treatment plan to me. The few friends who have experience of this seem surprised that they do not always do surgery first. How did you cope with 3 young kids and treatment!?!

lily I am sipping a glass of wine (while I still can? Can you drink on Chemo?) but will take you up on your offer of Sangria straight afterwards!

mrsrhodgilbert · 28/07/2014 22:31

Welcome briteside, this is the thread you never wanted to know about but will become your solid support for what you are about to go through. Ask anything, no matter how silly it seems. Someone will have experience of it. Elporto is the most recent here to have had surgery I think and we talked her down a few times when she was first diagnosed...and she's doing fine.

I'm just finishing treatment and I bought myself some new running kit today, can't wait. You'll get there.

mintyneb · 28/07/2014 22:40

Hi Brightside, welcome aboard! I'm another newbie having only been diagnosed 3 weeks ago. I seem to be suffering from the holiday season at my hospital as people don't appear to be around and appts are very slow coming through.

My diagnosis at this stage is Grade 3, HER2+ invasive ductal carcinoma and like you I'm going to have chemo first followed by surgery and radiotherapy. I'm seeing someone from the oncology team this weds to talk about the chemo treatment and hopefully I'll get some idea when it will start. I'm having a bone scan on 5th Aug but am still waiting for an appt for ct scan. For now though the team are going by my ultrasound which did not seem to suggest the cancer had spread but who knows?

There are some really great people on this thread who are very supportive and even though I haven't been here long I sense that there is no such thing as a stupid question and it's right to go through every emotion under the sun.

I had a bit of a tearful meltdown last Friday but am now back to my state of disbelief and that I'll have to go back and tell people at work that I'd got it all wrong and I was just having a bad dream ...

mintyneb · 28/07/2014 22:42

Sorry briteside my phone got carried away and spelt your name wrong!

elportodelgato · 28/07/2014 22:43

Yes, just to second Mrsrhod, I have been talked down from the ledge several times by amazing people on this thread, sometimes even at 3am, this place has already seen me through some dark dark hours, I am so glad you have found it too.

traviata · 29/07/2014 09:47

Hi briteside and welcome.

I had surgery first, for Grade 2 invasive ductal breast cancer, and I am now mid-chemo. 4 down, 2 to go. I think I have been lucky with chemo side effects (from FEC, other drugs seems to have different effects). I have had a week each time after treatment when I have felt rather meh, anxious, can't think straight, slight nausea, head feels foggy, mouth feels gluey, and very tired; then 2 weeks when I would hardly know that I was having treatment.

I have been gardening; yesterday I pruned an enormous shrub and chopped all the bits up, today I will be drilling holes in walls to put trellis up. If I were a runner, I think I would be able to run in my 2 good weeks. As it is, I walk, I have walked half an hour to and from hospital each time - but slowly on the way back, I have to admit. I also have the immeasurable benefit of a DH who is SAHD, so he does all the routine household stuff as he normally would, and my DC are older at 12 and 10.

I did meet a lady at hospital last time who has been working almost full-time through chemo. She arranged to work at home more often, but she was also commuting into London a couple of times a week, and managing OK. So it is different for everyone.

and yes you can drink wine! (if you want to - my inclination to drink wine or beer has almost gone, which is quite a big change for me).

Speedypenguin · 29/07/2014 10:00

Have just woken up from a codeine induced sleep Smile. The reduced dose seems to have helped this time as does not appear to be as bad as last time. I would like to taste something though!

Briteside- I have had chemo first. My first reaction was to want the lump out but this way my onc has been able to see the effect of the chemo and adjust if needed. (I had an extra FEC due to it shrinking well). These days treatment seems to be so much more individualised. I found writing down my huge list of questions for my onc helped when I had my appointment.l

Off to watch more of the commonwealth games. I think I should add going to watch athletics or gymnastics to my list of things I will do after this.

Nelsonwasonce · 29/07/2014 10:14

Hi all and welcome to briteside.Gosh,I remember those early days of first having been told the fact I had breast cancer. It filled all of my thoughts,no room for anything else it seemed.
That was beginning of June this year (seems a lifetime,but it's only 8 weeks), have since had a mastectomy,4 weeks ago,and have an expander.
I've been doing really well,above my expectation to be honest.Drove the car after 2 weeks,picked up the care for my horse after 3 weeks and am actually almost back to normal apart from a few restrictions in my arm movement. I am aware that I possibly got off light so far as I haven't had to endure any rads or chemo,am not on any medication and only had a sentinel node and 2 others removed.
Only slight fly in the ointment was they found some cells that suggested micro metastases in the sentinel node which puzzled them as there was no invasive cells found in the breast tissue.
They have send it up to a specialist for a second opinion,just in case there were some minuscule invasive cells in the breast tissue after all that had been hiding in the massive 100mm of DCIS found.
My appointment for the results was today.
I must have lulled myself into a false sense of security as at times I forgot I had cancer....
BCN rung yesterday to postpone my appointments as the results weren't in yet.
My mind has been going bonkers since and I can't stop it.
I keep thinking they must have found something and now it needs discussing with the MDT again to re-asses my treatment.....
I know I'm being silly,but my mind won't stop going into overdrive. Both me and my DH are quietly going round with that cloud of doom hanging above us again.Awful,when I was feeling so positive again. Sad

beccajoh · 29/07/2014 10:17

I've been in hospital for the last week, came home yesterday. I had unexplained vomiting and nausea for about two weeks (truly hideous) so had all manner of tests. A quick trip through the CT scanner showed up that the melanoma is back again, this time in various internal organs. It's grown since I had my previous scan a month ago.

This new development has pushed me into stage 4. To say I'm terrified is an understatement. My oncologist has started me on a drug called vemurafenib, which will knock the melanoma back whilst they decide what to do next, but won't get rid. I'll be on that for an undefined period of time. The melanoma will develop resistance to it at some point, average time being seven months. After that it's onto clinical trials I think. The doctors say there's quite a few new treatments in the pipeline and I'm going to be dealing with this for years.

I guess I just have to keep in mind that new treatments are coming along all the time, and that just because there's nothing available right now that can make me better, it doesn't mean there won't be in the future.

Speedypenguin · 29/07/2014 10:26

Nelson - am sure the results are just taking time, people on holiday and the such like. I know it's really hard when things are uncertain. Whatever the results there will be a good plan. Big hugs to you and your husband.

Becca- so sorry to hear you have had crappy news and that you have been unwell. I hope that drug keeps it all at bay for you and am sure that something new will be in the pipeline soon. I am amazed with all the stuff they keep coming up with. Sending you a really big hug too.

Lilymaid · 29/07/2014 10:30

I have to remember sometimes that I have cancer ... what me??
Briteside everything tastes weird on chemo but it isn't for ever! I'm still taking oral chemo so wine doesn't taste like it used to ... but I keep on testing it.
Beccajoh Welcome, unfortunately, to the Stage 4 people. I am one of these too. To be optimistic you need to think of it as a chronic complaint which medication can keep under control.

Nelsonwasonce · 29/07/2014 10:58

beccajoh so sorry to read your latest update Sad Puts my situation properly in perspective,feel a bit of a winger now.....
speedy ofcourse you're right,these things take time,I know that,but that little niggler in my head then says :"6 weeks?? really?"
Wish I could switch that off for a minute Smile

beccajoh · 29/07/2014 10:59

Lily that's a good way of thinking about it.

briteside · 29/07/2014 11:38

wow - I wish I could express in words how it felt to read your messages this morning - it was so reassuring to hear from others in similar situations (other newbies still reeling from shock, another one with a SAH DH, young children etc)

Becca (And Lily) - I have heard so many good things about the speed at which treatment is moving. I have an Aunt who was stage 4 and put on medical trials, that was 5 years ago and she is going strong. like Lily says: it is a chronic disease that needs managing.

Of course, in the light of day it is easy to dish out that advice. At 1am (and 2am...and 3am...) the panic sets in. I haven't slept properly since last week and it is starting to affect my ability to cope with even the basics. I am soooo tired!!

It doesn't help that I am in work today. I came in last week to tell my team and thought it would be good to come in again today, a chance to act normal and be 'me'. Instead I want to scream. or cry. or both. I can't believe the nonsense that everyone is stressing about. And how the world seems to carry on like normal while I think about oncologists appointments & CT scans & the fact that I might not like wine anymore Hmm

beccajoh · 29/07/2014 11:44

It's my age/family situation that I find most upsetting. I'm only 34. My daughter has just turned two and my son is six months. As things currently stand there's a good chance I might not see my son's first day at school Sad

briteside · 29/07/2014 12:02

Becca, as the consultant said - you will be dealing with this for years, medical research moves so fast. I can only begin to imagine how hard your diagnosis is but Lily's advise is good. Think of it as a chronic condition that needs ongoing treatment but does not have an end date.

Do you have any plans for the coming weekend? Perhaps some family time?

traviata · 29/07/2014 12:03

becca Thanks and Brew

RahRahRasputin · 29/07/2014 13:04

beccajoh I'm sorry about your latest news, that really sucks (understatement). But as everyone has said, it's a case of managing it. It's all very well for us random folk on the internet to say it, of course, but I'd take it very seriously from your medical team. They always err on the side of caution and do not make those comments lightly. I cannot imagine what you are going through, please vent here all you need, and cry/scream/rage, whatever you feel like. I wish there was something more useful I could say Flowers

briteside I'm sorry you've had to join us, but welcome :) you will find lots of support here and between them, those who have had breast cancer have probably had almost every possible treatment combination, so there's bound to be someone who can answer almost any question! There's no point comparing treatment with others, even if their case sounds similar, as every cancer is slightly different and every team has different protocols/preferences etc. Your team will give you the treatment that they believe is best for you.

Lots of people find this early phase, after diagnosis but before a definite plan is in place, the most difficult. Treatment is a bit like a runaway train, once you're on you just have to go with it. That makes it easier in many ways as you will know roughly what is coming next, and there are few decisions to be made. You will get through it, but it won't always be much fun.

Is your mother-in-law someone who likes/is used to being the centre of attention? I had someone like that when I was diagnosed. When I told her I had cancer she said "oh yes, I know, I looked up your symptoms on Google" and "you're too young to be ill, you'll be fine", then back to her dislocated toe Hmm and how much pain she was in. Throughout my treatment she minimised things, unless it was how traumatic she was finding my treatment. Bizarre, but she is not in my life anymore! Bit more tricky with your mother-in-law who is presumably rather more permanent Grin

Otherwise perhaps she finds it too difficult to imagine you going through treatment so is in denial. She might get over it in the next few days/weeks - maybe your husband could talk to her? Ideally she would be supporting you both, or at least not adding to your stress!

I don't have any children yet but others will hopefully have advice about explaining to little ones - I think there's a book about "Mummy's lump" which might be helpful.

nelson I hope you get your results soon, it must be worrying. Presumably they are having to investigate the tissue sample very thoroughly, which must be quite time-consuming. In my experience, doctors can have a rather unrealistic view of how things work so if it was your consultant who booked the appointment it may be that she just didn't allow enough time for the standard lab procedures, not that the time has been delayed/extended if that makes any sense. Certainly my consultants have an air of clicking their fingers and expecting things to magically appear Smile it must be hard not to expect the worst, have they given you an idea of what the realistic worst case scenario would be?I don't know if that would be helpful to you at all, but it might help allay some of your fears.

Waving to everyone St DavidsSt DavidsSt Davids

weebarra · 29/07/2014 13:15

Good words as always Rahrah! Mummy's lump is a good book but I didn't recommend it precisely because of the chemo before surgery bit (it's the other way round in the book). I did read it to the DCs though, just explained the bits that were different!
My oncologist told me I was having chemo prior to surgery as the lumps were big, in both breasts, in the nodes and hormone negative, so they couldn't really use drug therapy. This meant that they wanted to shrink things as much as possible before surgery.
Becca - sorry to hear your news, but hoping that it will just remain a small annoyance, and that you will get to see your babies start school.

amberlight · 29/07/2014 15:26

Beccajoh, not quite the news you were hoping for. This may help a lot: They have just done the stage 1 trials for Nivolumab and ipilimumab combined, for 53 people with metastatic (Stage 4, in other words) melanoma. To the astonishment of the team, the survival rate went up to 79% over two years, and a very goodly number were still here more than four years later. This is before they've even done the main trials and tinkering about with it. By which time there will be even newer stuff, no doubt. No guarantees, but you have arrived at the point where they think they have the 'eureka!' moment. Do chat to your team about it all.

Hi Briteside. Thanks for the biscuits. Sorry you've found yourself here. Great people here to chat to whilst waiting. Waiting's definitely the worst bit for many people.

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