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Got Myself a Plan, Just not the one I was expecting!!

26 REPLIES 26
Patlufc
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Thankyou for all your replys. At the back of my mind (maybe now at the forefront) I too am thinking I need to do all I can to prevent any possibilty of secondries, just need to speak to my family about my decision.

Good luck to all starting treatments.

Pat x

cromercrab
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

I had 6 fec and it was ok, tiredness towards the end. Just rest when you need to
X Sarah

simonwithane
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Lilac, Jill, thank you so much for sharing. When I hear your experience it just gives me that nod of reality that I need so that I don't go into overdrive and start making up horror stories in my head. Best wishes and big hugs to you both, Simone xxx

Tolliebelle
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hi

I was told by my BCN that I probably wouldn't even need radiotherapy when I went to appt before my surgery. Got my results from BS on my birthday and was told appt made for Onc the following morning! I was stunned to be told needed 8 x chemo and 3 weeks rads. This was NOT what I was expecting. Started chemo March and finished last week had rads in between. It was tough but not as bad as I was expecting and I got through it and am now just waiting for last of se's to dissapear!!! It was daunting in March it felt like it would never end with last date for Sept but the time actually has gone quite quickly looking back. Just take each day as it comes and deal with what ever comes along and dont look too far forward (if that makes sense) You will all come through this and looking back I can honestly say it wasn't all bad!!! Good luck to all of you starting off and this site will be invaluable for you. Moan away if you need to it helps!! And others will be there for you and support you through.

Best Wishes

Jill x x x

Lilac
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

To Simone and everyone at the same stage -
I'll never forget how I felt when I was advised to take the same treatment plan as you - for a few weeks waiting for chemo to start I really felt I was going insane! I used to get in the car late at night and drive around the countryside rather than go to bed and lie awake worrying. I even turned up at a friend's house at midnight one night (still a friend, thank goodness). But here I am over a year later, surgery, chemo, rads, and half my herceptin treatment over (still a long haul with tamox). You will get here too and realise how strong you really are inside, ready to face all that life has to offer again. There'll be tough days along the way, plenty of tears and a few meltdowns if you're anything like me, but you'll get there!
Big, big hugs

Lilac x

supertrouper
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

I wasn't given a choice about having Chemo - I needed it to try and shrink the tumour to an operable size - and the chemo is working although it is a harsh 4 x EC and 4 x TAX three weeks apart. I am 55 and decided I would take all treatments offered to me.

Today I had my first TAX and a good friend of mine was doing distant Reiki healing on me at the same time. There are a couple of churches close by that pray for me and I do positive meditations/visualisations whenever I get a chance. Tumour has shrunk considerably.

Good luck to everyone going through this.

Harrietxxx
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Patlufc, it's a tough one isn't it, having to decide. My benefit was 5% and my oncologist said that chemotherapy was 'worth a conversation' but up to me to decide. Like you I had clear margins, no node involvement and strongly er/pr positive but her2 neg.

For me at aged 46, I felt that I had to take any treatment offered to me and don't want to kick myself a few years down the line if I end up with reoccurrence or secondaries. The end game for me is to completely destroy it now. Not that there are any guarantees anyway but I personally would feel uneasy if I didn't go for it.

It's about whether the risks such as the se outweigh the benefits , and only you can decide this.

By the way, I haven't started yet, so may have a different view after my first dose 🙂

Good luck and let us know what you decide

Jules
X

simonwithane
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hey Patlufc, I'm kind of new to all this but all I can tell you is that I think any opportunity to increase your odds as it were is a good thing, but obviously everyone's different and them's some pretty unpleasant se's you might have to deal with!! Might be worth ringing the BCC helpline, chatting with your BC nurse and of course your family. Sorry I know that's not particularly helpful but all the best and good luck with what is a difficult decision, Simone xxx

Could anyone else offer Patlufc any useful info please, thanks xxx

Patlufc
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

I needs some quick advice please. Went to see Oncologist yesterday, my BC is hormone recetive but neg to protien so I don't need herceptin (good news) I know I will need radiotherapy and tamoxifen. I had my lump removed with good margins and no lymph node involvement. My Oncologist said I was on the border line as to if I need chemo or not. There is an 85% chance of still being here in 10yrs with radio and tamoxifen and having chemo only adds another 3% (this is an estimate). Is it worth going through chemo for and added 3%. He is rining me Friday for a decision. Any advice??

simonwithane
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

SGL, just about getting my head around this, but just a little bit fuzzy!! And mahoosive hugs to you too xxx

Jules, on the same wavelength, I'll throw whatever I can at this to get out the other side, good luck for 30th and fingers crossed se's are titchy xxx

Ninja, couldn't agree with you more, feeling worried enough about 6 lots, must be dreadful for those who have longer, by the way I meant to say on other threads, your profile pic made me giggle, brilliant xxx

Hey Mrs Doubt, hope you have the best weekend away with your friends and happy birthday xx Going to give the cold cap a go myself, although my hair is short anyway, I figured it was worth a go, good luck with yours xxx

I know I keep saying this but I just can't believe what a relief it is that this site exists, thanks everyone xxx

mrs_doubt
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hi mrs Doubt here, I have to have chemo then rads then 5 years tam, found BC on a routine mam in july. Had lumpectomy was grade 3.Its my 50th birth and I am going away for wk end with about 20 friends. So I asked oncol if I could start after that. Just got my plan I start my first 1 on the 12 oct. Like you I am bricking it as dont know how its going to affcet me. I have realy long dark hair all my own colour and am so worried about loosing it. I am going to wear a thing called a cold cap to try and stop it falling out. He said he wasnt going to give me strong drugs so dont even know what I am getting till I go. I wish you all the best .xxx

Ninja
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Simone, I have to say from reading your OP, that sadly, your treatment plan looks pretty standard fare and what most folk on here seem to have.

You just have to feel sorry for the poor so'n'sos who have 8 cycles of chemo or who keep on having it for years.

Good luck with yours.

Edited: for typos.

Harrietxxx
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hi Simone,

I have my first FEC on 30 Sept, after expecting to just have rads and tamoxifen, but I would rather know I have had everything possible to stop this coming back.

Good luck everyone starting at the end of the month , we will get through this together.

Jules
X

stargazerlily
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

awww it probably looks worse in print than it actually is lol I am lucky in that my nodes were clear and that hopefully I have no vascular invasion. But yes it was a shock to be told for months I would not need chemo to suddenly have that and herceptin thrown at me.

I am lucky in that I am now under the Royal Marsden and the Professor of Oncology was absolutely adorable and when he saw how distressed I was about the chemo business, he opted to give a less harsh one Vinorelbine, along with my herceptin, that does have side effects, but hopefully wont make me loose my hair, so all in all its not too bad.

I really hope you are managing to get your head around this, its a really shock at first, but it will get easier.

hugs and stuff.

xxxx

simonwithane
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

SGL, blimey I know it's no competition as to who's got it worse but that's some mill you've been through there, hopefully your days will get better, hugs to you xxx

Crabbit, thanks for the wishes, and a trip to M&S treat aisle is planned for this Thusday!!

Clare, hope you get your plan sorted soon and in the meantime happy eating, Go us xxx

Fi, good luck with the rest of your treatment and hope your se's are tiny, thanks for the M&S tip xxx

Dizzycloud, good luck with your treatment, my kindle and this forum has been my saviour to date, just couldn't face daytime TV!!!

Good luck to all, Simone xxx

dizzycloud
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

hi

I will probabely be starting chemo at the same time as you. Saw my Oncologist yesterday, have to have 6 x EC chemo, possible might have rads to follow and 5 years tam. Originally I was told surgery followed by 5 years hormone!
Don't know how I am going to handle 6 more months of going stir crazy at home, but I am sure I will cope

f_in_limbo
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Me too, was expecting three weeks of rads and then got the suckerpunch, 6 courses of FEC chemo plus three weeks of rads and herceptin.
Had my first chemo, 2nd on thursday.
Buy yourself some nice treats for when you have had chemo, I found it a good excuse to go to M&S and spend on things that I would normally reject.
Go on treat yourself .
Fi XX

Clare37
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Awww same plan as me simone but i am still waiting on my start date for chemo and my appointment for bone scan.....waiting waiting waiting

I am also planning on getting a few treat meals in before the poison. Going out to pizzaexpress on friday with some friends and im sure i can fit a couple more Big BK meals in the next couple of weeks hehehe

Im also bricking it but we will do this! x

Crabbit
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Phew Simone, Barbara, Stargazer etc,

Crappy news but what a great crew you are to support each other through this!

Great advice as usual, get the treats sorted whilst you can and best of luck. xx

stargazerlily
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Ditto! I was told from diagnosis on 9th March, that I would have surgery, 3 weeks rads and tamoxifen! On the 12th july after THREE lots of surgery, that all changed and I was told I would be having six weeks of rads, 6 cycles of chemo, 18 infusions of herceptin and tamoxifen for five years!! I am having everything they can thrown at it. Every time I went it changed. The worst bit for me was finding out I was her2 positive, hence the herceptin!!

I can totally feel for you today as it's a horrid shock when you are told you definitely won't need chemo!!

All the best.

Xxxx

simonwithane
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Ladies, as always, thank you for your kind words of support and guidance.

Barbara, good luck on the 7th Oct, let us know how it goes.

Revcat / Lavender Lassie, week 3 duly noted and in the diary!! Not that my priorities are skewed at all!!!!!

Impatiens I don't think Hangover + Chemo would be the best combo, but hope you have a fabulous birthday anyway xx

hjv123, will go looking for that chemo in sept thread, thank you.

big hugs to you all, Simone xxx

hjv123
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hi Simonewithane, i was exactly the same, expecting to get away without chemo then they hit me with that whammy. I started my first FEC last friday & so far have felt generally ok, no sickness , just tiredness really. I was bricking it as well but as u say it'll keep us alive longer. U sound like u have a good attitude about it & i really think that helps. You'll have to come & join us on the starting chemo in sept thread. Good luck with it & yes u will get through it, i think the support on here is absolutely fantastic & i really don't know how i'd have got so far without it.

impatiens
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hi simonwithane

I have almost exactly the same treatment plan as you except my chemo begins on the 30th and I always knew I would be having it. Its been delayed for a few weeks because of infection and I asked if it could be delayed until after my birthday - the 29th - they said yes but I have to have it on the 30th! So no birthday drinking for me.

Actually I'm glad it's not being delayed any more, I just want to get on with it and want to know how it's going to make me feel. I'm expecting to feel fairly crap for the week afterwards and get gradualy better til the next one.

Good luck!

Lavenderlassie
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

It's a good plan, Simonwithane, especially the restaurants beforehand.
And as Revcat says, plan some more treats for week 3 of each cycle.
.

RevCat
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

So sorry that you have to take this long, arduous route through, but it sounds like you have a great attitude to get you there.

Enjoy some nights out whilst you can, build some treats in for the good weeks (week 3) of chemo and be gentle with yourself. Then take it all at your own pace.

As you say, by throwing everything at it, you maximise your chances of a long, helathy life... buses notwithstanding.

Sending you a cyber-hug

sunshine_1
Member

Re: Got Myself a Plan, Just not the one I was expecting!!

Hi Simone,

Its a bummer isn't it. Although I haven't officially been told by my Oncologist, only my consultant, it looks like we are going down the same route. I still have to have a further op yet on 7th October. I don't blame you going to town before it starts and of course you need the reserves in your body to help when chemo starts.
I hope it goes ok, at least your journey will be well under way by the time mine starts. Will look out for your posts.

Barbara x

simonwithane
Member

Got Myself a Plan, Just not the one I was expecting!!

Went to see Oncologist today, and was all ready for her to say "wow those scars look good, and here's the dates you'll be doing 3 weeks worth of radiotherapy, goodbye and good luck we never want to see you again"!

One good dose of reality later and I will now be starting 6 lots of chemo on 29th Sept over 18 weeks followed by 3 weeks of radiotherapy, followed by 5 years worth of Tamoxifen. Trying to keep thinking that all this will keep me alive longer, (as long as a bus doesn't get me first!!), so it's worth it! That'll teach me to be optimistic!!

So my personal plan of action before the poison begins, is to hit as many of my favourite restaurants as I can before the 29th, just in case I do end up with no taste and nausea!!!!!!!

Slightly bricking it, but reading everyone's journey and the massive amount of support on here I know will get me through this.
Simone xxx