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Starting Chemo in December.2012

2,243 REPLIES
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Re: Starting Chemo in December.2012

Hi Crackers, I'm late checking in this time round - I usually try to swing by near Christmas but was ill with two back to back viral infections in December and was coughing myself inside out for weeks.  

 

So glad to see some familiar names still keeping up the annual tradition too Smiley Happy

 

Sarah, I'm sorry you've been going through a rough time and I hope that the treatments you've had and any future ones that you may need will keep you stable for a very long time. New drugs seem to be coming along all the time, so finges crossed for you - keep up that positive attitude!

 

Maire and Cybele -  I fully get the reasons behind your choice to ditch the hormone treatment, but I'm just too chicken to take that leap of faith myself and so I plod on.  Have done 5 years of tamoxifen and 1 year of anastrazole with 4 more to go.  The SE's have been pretty dire, but I feel it's been my crutch and to date I'm prepared to suffer the side effects as long as I can manage.  Can't guarantee I'll complete the full 10 years, but I'll do my best. 

 

Pammy, nice to hear from you on this thread.  If you find a way to shift weight whilst taking these blessed hormone pills, let me know!! 

 

Trixielady - I'm sorry I haven't replied sooner, but I generally only look in on this thread once a year.  I had a very quick look at your profile and see you're having chemo and reconstruction.  I hope everything goes well for you and am sure you'll find great support in the monthly chemo threads. 

 

After 6 years being a uniboober, I decided to ask for another mastectomy for symmetry.  I never wanted to have reconstruction and hated being lopsided so opted for the other breast removing and to go flat.  My surgery was on the 4th Jan and it's been much easier this time round as there was no lymph node clearance and no worries about cancer or chemo.  Now I need to work on my Buddha belly which is much more noticable with no baps to interrupt the view!!  

 

Wishing everyone all the very best of health and happiness in 2019 xx

 

Michelle

 

Member

Re: Starting Chemo in December.2012

Happy 2019 everyone, great to have our annual check in. Any chance of immunotherapy further down the line Sarah?
I always think of our chemo experience at this time of year, especially when I hang my wee cracker in the tree.
I dumped the Tamoxifen after 2 years Cybele as I just didn’t feel comfortable with it. It was affecting my sleep and white blood count so it got binned.
So here’s to another year and let’s hope we keep the demon at bay x
SP0
Member

Re: Starting Chemo in December.2012

Oh Caroline & Pammy, I'm thrilled to see your comments!

I'm 3.5 years on Letrazole & empathise with the impact entirely. Caroline, I'd not heard of the rage- but it would explain a lot! I've had several 'unfortunate incidents too. I can certainly understand making the quality of life decision to stop after 5 years. If you look at Jane McLelland's book "How To Starve Cancer", she believes there are other ways to block the oestrogen fuel line. I'm not advocating & don't feel I can risk it, but interesting nonetheless. I'm struggling with weight too.

So it helps a lot to hear from you. love & best wishes to all...Xx
Member

Re: Starting Chemo in December.2012

Good to hear from you, Pammy, and thank you for replying lasy year, too! 

I just looked down the thread and saw that Shellebelle also posted last year, which i seem to have missed - sorry.

 

I know what you mean abou the years going by, Pammy - it's just astonishing to think this was all six years ago. I remember back then just desperately wanting my life back, which seemed impossible - but it happened.

 

The chemo still haunts my dreams, though, and I get flashbacks whenever I see a picture of anyone wearing a cold cap, or with an IV in their arm.. but we did it, and we're still here to tell the tale six years on.

 

Good for us!

 

Wishing you a Happy New Year and many more  to come  

 

Caroline xx

 

Member

Re: Starting Chemo in December.2012

I am not a cracker but a Marchie, although I followed the thread at the time. Cybele it is so good to hear that you are doing well. I am still on the letrozole and yes loosing weight is nigh on impossible although I do not suffer any other effects. I am likely to be on it for another 4 years.

 

i hope everyone has a happy New Year I can hardly believe it will be 2019 it seemed nigh on impossible in 2013. 

Love and best wishes to you all Pammyxxx

Member

Re: Starting Chemo in December.2012

Hi Sarah,

 

it's great to hear from you - I think I was the only one who posted last year, so wasn't sure whether

to bother this year. I can see why people want to move on, but our shared experience in 2012/13 did make

a very special connection, and I'm very glad that at least one other person wants to keep up the tradition.

 

Sorry to hear about the recurrence, but great news that you've effectively kept it at bay for such a long time,

and that the recurrence is local. Fingers crossed it will stay that way! Also great news about your house - we also finished renovating our house this year, with a loft conversion, and are now determined never to move again. It's such a relief when it's all done and dusted.

 

My treatment news is that I stopped taking Letrozole this summer, after 5 years, although the oncologist

recommended that I take it for another 2 years - a decision I hope I won't come to regret.

But the effect of Letrozole on my quality of life was so severe that i got to the point where I just couldn't bear to take it any longer. The physical side effects - aching joints, fatigue, generally feelinga hundred years

old - gradually dissipated by about year 3, but the mental side effects - which may be summed up in the useful phrase I saw somewhere 'Letrozole rage' - just got worse and worse.

 

For the lost couple of years my mind was constantly filled with a cloud of anger just looking for something to land on, and it was horrible. And I was horrible. This led to a number of unfortunate incidents, and it got to the point where I just couldn'ttake being that person any more.

 

It was possible that these symptoms would have come on anyway with the menopause (which began with my first chemo session, after which my periods vanished for ever), but since I stopped taking Letrozole

in the summer, the constant seething rage has gone, which is a huge relief both for me and poor husband, who bears independent witnessto the fact that I am 'much less explosive'. 

 

I am writing about all this in case there's anyone else out there who is enduring similar problems. I know Letrozole is an excellent cancer drug, but it really is nasty stuff. I might also add that I have lost 1st 4lbs since I stopped taking it. i have been going to the gym regularly and eating a very healthy diet for the whole of the last year, but I only really started to lose weightsince i stopped taking the Letrozole in June, and the difference is now striking.

 

I did spend some time studying the medical literature before i stopped taking it, as losing your safety blanket is a very big step. The consensus seems to be that in women with early stage cancers, the protective effect of taking Letrozole for the final 2 years is very small, and one that may well be outweighed by the problems caused by side effects. I still worry, obviously, but this did bring some comfort.

 

And now I feel like me again...

 

Sarah - all the best for 2019, and let's hope the doctors have lncoked it on the head again.

 

To the other Christmas Crackers, if you're still subscribed to the thread, Merry Christmas and a Healthy New Year!

 

Caroline xx

 

Anyway

SP0
Member

Re: Starting Chemo in December.2012

Hello dear Crackers.

I didn't realise I'd not posted last year until logging in today. We were renovating a house and it took over everything. But we finally live in our 'together home, having met in April 2012!

I finally had some progression, after a blessed 3.5 years of NED remission. It was in the form of local recurrance in the same breast and has been surgically excised with my 3rd lumpectomy!

No more chemo for now, thankfully as no new tumours in liver, lungs or elsewhere, according to CT. I'm waiting to see if radiotherapy will be recommended and any changes to my drug regime.
I understand the theory is my cancer's becoming more drug resistant but it still has a way to go if only regrowing in the breast for now.

It's a tough one psychologically though. I feel I'm back on the slippery slope but dont know how steep or slippery it is. I know putting it in context, I've done incredibly well but somehow that doesn't help enough.

I wish you all well and hope a year on from the 5 year mark, this is all becoming a more distant memory. Love Sarah xx
Member

Re: Starting Chemo in December.2012

Michelle, I've just had a mastectomy and lymph nodes removed my results are due this week, drains also hopefully come out this week it will be two weeks on Tuesday since my mastectomy, when will I be able to sleep on my sides and use my arm and drive everything I ask they say when you're feeling a bit better
Member

Re: Starting Chemo in December.2012

Hi Crackers!   

 

Dropping in to wish everyone a very Happy Christmas and New Year.  So glad to be at the 5 year milestone and still doing well, although did have a bit of a minor scare earlier in the year with a very small bump that grew on my chest  (mastectomy side) and because it wasn't 'normal', albiet not cancerous, they whipped it off, so I have another mini scar to add to the rest.   

 

I've now been prescribed Anastrazole for the next 5 years which I'm starting in the New Year once I've finished off my stock of Tamoxifen and can't say I'm looking forward to it, but will just have to see how it goes.  Had a bone density scan and have been put on high strength vitamin D and calcium tablets, which hopefully will help with the effects of  Anastrazole.  Will have another bone scan in a couple of years if all goes to plan.  

 

Both my girlst have flown the nest this last year, so it's pretty quiet at home - hubby and I are now semi retired and spending more time enjoying the simple things in life.

 

Fingers crossed for another 5 years of being cancer free.  The doubt never leaves you, I know, but you've gotta live your life while you have it, so onwards and upwards.

 

All the very best eveyone xx

 

Michelle

Member

Re: Starting Chemo in December.2012

Great to hear from you Cybele, another year I was in the 2013 Marches but I followed your blog which lightened up the dark days. Great to hear you are doing well wishing you well for 2018.

Best Wishes Pamx

Member

Re: Starting Chemo in December.2012

Hello Crackers,

 

It seems to be that time again!

 

Here we are five years on, and I can hardly believe it. I'm still OK (touch wood), and  extremely grateful and

happy still to be here. I see from a post I made back in February that I was having a difficult time then emotionally with the 'is my cancer coming back?' paranoia, but that seems to have faded away again. 

 

I think this probably the first year when I've spent a lot more time worrying about other things in my life rather than about whether the cancer is about to come back - so I guess that's progress.

 

One cheering thing I have found this year is that the side effects of the Letrozole seem to have gone - I got a lot of aching bones and mood swings at the beginning, but that's  disappeared.

 

But it's all become very vivid again for me now because a friend of mine is now also going through treatment for breast cancer.

 

I hope you are all continuing to be well, and wish you a very merry Christmas and a happy New Year.

 

Much love to you all xxx

Member

Re: Starting Chemo in December.2012

Hello Crackers

 

I've been trying for three weeks to get on here but the Forum woudn't accept my user name or password and athough I made 4 requests for a new password and was told an email had been sent to me I never got one. So the long and the short of it I've started a new account under a new email addy and I'm now "Collies" instead of Border Collies.

 

Cybele I can understand your anxiety and fear even though I have just had an ultrasound scan, and one of the new 3D mammograms read by two separate radiologists and am lucky enough to be still NED.  I find that on a daily basis I can live my life as before bc and not even think about it but when it comes to big things like booking things months in advance and for instance when my husband wanted to buy a new motorhome for my dog shows I wouldn't let him do it until I'd had my scan and mammo for that year.  I always feel not "if it comes back" but "when it comes back"  and my tumour was Triple Negative so not so many options for treatment.

 

I feel well in myself and live life to the full but that fear is always there - nibbling away at the back of my mind.  Anxiety itself is a strange thing.  My anxiety is always worse when I'm alone with time to think but I can be in a real black hole and the doorbell will ring and my brother or friends have popped round unexpectedly and I become a different person - the person who never had cancer - the person who doesn't

have to llive in fear of it's return.  I am carefree but as soon as I am alone again all the old fears and anxieties rise to the surface.

 

That said I'm more fortunate than some.  I was devastated to hear of the loss of QD.  She seemed such a vital person - life is so unfair.  Lisalouw so happy to hear that you have finished your treatment now and I really hope that life will get better for you now.  The same for you Spo.  It takes courage to deal with this awful disease the way you have.

 

Maire, so sorry to hear about your mother.  What a horrible way to start the year.  I hope all went well for your annual  checkup.

 

You know I so rarely come on this Forum now and yet at this time of the year I'm drawn to it like a bee to honey, with a real need to know how everyone is.  I will never forget the comfort the forum and the Crackers in particular gave me during 2012/13.  Good luck to you all.

 

B.

Member

Re: Starting Chemo in December.2012

Hello again, Crackers.

 

Just to say I have just posted on one of the other parts of the forum about the mental difficulties I seem to be experiencing, despite being 4 1/2 years on, NED and having just had a clear mammogram.

 

It's here

 

https://forum.breastcancercare.org.uk/t5/Coping-with-fear-and-anxiety/One-year-on/m-p/992448#U992448

 

I'd welcome anyone else's thoughts on this because I don't really know how to deal with it, except perhaps by seeing a therapist. It's always hard around our starting chemo anniversary and mammogram time, but this year I just can't seem to get a grip..

Member

Re: Starting Chemo in December.2012

I'm very late in wishing all continued stable health this year. Sadly my mum passed away on 1st January from advanced pancreatic cancer and we have just laid her to rest on a snowy day with the sun shining and the sounds of the local school children having fun at playtime. As my mum was an ex school teacher those little happy voices just added to the poignancy of the moment.
Our journey goes and I'm so grateful for the research done into breast cancer which has undoubtedly stacked the odds in our favour.
Keep living life to the full crackers and a raise a toast to you all and to our sadly departed crackers xxx
Member

Re: Starting Chemo in December.2012

Ooooh, I'm a bit late this year but I've made it onto the forum just in time to wish everyone a very Merry Christmas and a Happy and Healthy New Year for 2017.  

 

 

 

I try not to look back too often, but at this time of year I allow myself to remember all that we went through in 2012/13, the people who didn't make it this far and those still fighting the battle.  

 

I'm ok myself, still taking Tamoxifen and putting up with the side effects.  They're rubbish, but I dare not take it so I just have a whinge every so often and then get on with it. 

 

All the best Crackers!  

 

Michelle xx 

 

 

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Re: Starting Chemo in December.2012

Hello Crackers, and Happy Christmas 2016!

 

I can't believe it's 4 years since we started chemo - it seems unreal that it was so long ago, especially when the memories are so very, very vivid..

 

Sarah - so pleased to hear that you're doing well on the maintenance regime xx

 

Liselouw - I know it's been very tough for you- HUGE HUG xx

 

I'm fine - touch wood - though still hating the Letrozole. But very grateful just to be here at all, of course.

 

We had just moved into our new house this time last year, and we've very much been enjoying living in such a beautiful location, just round the corner from Ham Lands (a big nature reserve), and the river, and in walking distance of Richmond Park. The bird life here is amazing, and our bird feeders are frequently covered in crowds of parakeets, which are so lovely and colourful; I know they frighten off the smaller birds, but I try to put enough food out so that nothing with wings in the vicinity ever goes hungry.

Not to mention the squirrels,, who are all astonishingly adept at feeding from supposedly squirrel-proof bird feeders. Our back garden often looks like a Disney movie, with so many birds and squirrels, and I LOVE THEM ALL.

 

Still so very grateful for every day of good health..

 

Here's wishing you all a Happy Christmas, and an NED New Year!

 

Caroline xxx

 

 

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Re: Starting Chemo in December.2012

Spo not sbo !!!! Duh
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Re: Starting Chemo in December.2012

Hi sbo , nice to hear from you and great to hear your nad at the moment , it must have been such a hard yr for you , I've finished my treatment , having tests at the moment for pain in my pubic area , seems to be always something doesn't it , what does the drug that you take do , sorry to hear you had to give up your job xxx
SP0
Member

Re: Starting Chemo in December.2012

Just popping in to wish you all well this December. I've remained stable on maintenance treatment this year and am heading for scans in Jan with fingers crossed.
Sarah x
SP0
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Re: Starting Chemo in December.2012

Hello Crackers,

Good to see the thread running but very sad to hear of QD's death, such a short time time after secondary diagnosis too.

I'm obviously still here and currently NED on CT scans, after a second run of aggressive treatment. Tumour activity was picked up in liver & lungs again in Dec 14, cut out surgically. That's a rarely used solution for sbc, justified by my onc owing to few tumours in peripheral locations, stable for 2 years in rest of body.
It's taken me nearly a year to rebuild strength and learn to cope with Letrazole aches and I had to give up my job in the end. Otherwise all's well and I'm looking forward to the next few months, being well enough to do things.

Sorry to hear Lisalou you've been on chemo again. Hope it's done a good job for you. I honestly don't know whether I'll ever be prepared to do it again, so glad I have other drug choices for now.

Marie, there are other anti-oestrogen drugs you could try. I hear some oncs will prescribe post menopausal ones like Letrazole, in conjunction with Zoladex injections to shut ovaries down. But I agree with Cybele, anything anti-oestrogenic is awful, opposite of HRT.

Wishing you all well and hope to be checking in again at Christmas... Sarah x