Starting Chemo in December.2012

[Mindy63]

Hello crackers and merry Christmas,

Nice to hear from Shellebelle and Sarah. Glad you are stable Sarah and what wonderful news about your 2nd Grandchild. I am 1 year down from secondary diagnosis and stable so far. Still managing to work full time.

Hope our wee crew are all well and living life to the full after our adventure in 2012/13. 
All the best,

Maire

[shellebelle]

Hello all Crackers who may still be checking in from time to time. I know plenty probably don't and that's not a bad thing, some may be on other forums having ongoing treatment for recurrence and one or two may pop on at this time of year.

Sarah I'm so glad you are still stable and keeping in good shape.  I am always thrilled to read about new treatments for cancer and just hope they keep going forward finding more and more ways of letting people live as well as possible with the disease or perhaps one day that elusive cure.

In this last year we have welcomed my second grandchild, a brother for my granddaughter and he will be turning 1 next month.  Such a happy little chap, with a cheeky grin that I know will have the ladies swooning when he grows up. 

I'm in to my final stretch on AI's, which have been a challenge for the last 4 years.  Tamoxifen was a doddle compared to these evil tablets. I almost gave up after the first year, but I'm going to get over the finish line even if I have to crawl over it 

I don't know whether this will be my final visit to this forum now that my 10 year long treatment journey is coming to an end. Who knows what the future will bring, but I will never forget the support I had from this group and I know each Christmas I will raise my glass to all Crackers of 2012, those still with us and those that sadly aren't. 

Merry Christmas and a Happy and Healthy New Year to all xx 

Michelle 

[SP0]

Pre-Christmas check in, Crackers...

10 years down...  I'm still stable post last year's brain met drama.  I'm actually feeling rather normal & hence very frustrated about loss of driving licence.  Weirdly I've very little scan-able cancer in the six places it's been found in to date.

Marie, I wonder how you are?

Love to all and understanding to anyone who prefers to forget the whole thing.

Sarah x

[Mindy63]

You’ve had a rough ride for sure but your post gives me some hope in the midst of a shitty diagnosis.  Hope 2022 sees more adventures 

Maire x

[SP0]

Hello dear girls, how wonderful to find you here, as always.

Scrolling down I see I didn't even  manage to post last Dec.  I recovered from my last aggressive treatments just in time for lockdown Mar 2020.  Categorised clinically extremely vulnerable, I was frustrated, otherwise well & unable to carry out the volunteering I'd trained for.  So, I made scrubs, walked the dogs  collected a list of goods from the fruit & veg shop and dug in like everyone else.

Adventures have been had this year...  after postponing our last planned long haul tour 3 times, we took a loan, bought a motorhome & took off to Scotland.  We've been to Latitude Festival, EdFringe, Wales & Devon.

We also spent 6 months nursing my father at my parents home, dying from advanced prostate cancer and parkinsons at 84.  He refused to go to hospital & we had invaluable time with him.  It was hard but bittersweet too.

I'm glad he's not here for my latest development...  The cancer's finally travelled to my brain, 9 years from original double whammy stage 4 diagnosis.  It's something that can happen when Herceptin has controlled mets well in the body, as it doesn't pass the blood brain barrier.

It's the better end of an unwelcome development - a single tumour in the hippocampus at the back, affecting balance, picked up in a routine scan after reporting symptoms.  I'm waiting for mri confirmation of surgery or radiotherapy treatment which will be followed by systemic treatment changes (more chemo) to slow things down.

The funny thing is, I'm in the best shape I've ever been to deal with this.  3 months ago I started a  exercise plan to build strength & fitness as part of a wonderful group of ladies over 50, supported by expert coaches.  I started singing in a choir and have been following the Second Nature eating plan this year, losing my lockdown stone.  I shall be getting the bus to art group on Wednesdays with my old girlfriends each week. I feel blessed & supported (I'm also on Dex steroids!).

The last 2 years have seen my nephew marry, a second great nephew born, the wedding of my partner's eldest and a grandchild expected in Feb from his youngest.  This time, for the first time, I'm going to focus on being happy while I'm doing this.

I'm sorry to read of new developments for you, Marie.  You'd honestly think we'd have done enough between us!

Hormone treatments are the devil but useful when they work.  I found Letrazole much tougher than Tamoxifen but my breakthrough was being prescribed the original brand, Femara.  It's the difference between 3 hot flushes an hour & unable to move in the morning to moving slowly with 3 flushes a day.  Well worth the £100 a month more it costs the system!

Love to all, feel free to get in touch.  For those who've seen Nomadland (it's streamable)...  see you on down the road.  Sarah xx

[Mindy63]

I do check in from time to time. Sadly I was diagnosed with bone mets a few months ago. This most likely came from my 2nd invasive breast cancer and not the lump discovered in 2012. Hope all the other crackers are well xxx

[whyte]

Hi, 

II know what you mean. I was only diagnosed in 0ctober but I am in so much fear of re occurance. Especially with my oncologist being very honest and saying because I’m triple negative I have high risk of it coming back within 5 years. 
They only did lumpectomy, I would of preferred to take them both off. I start chemo very soon. I have the kidney check today. 
I have pain in my chest wall but I expect that’s still from lumpectomy as only had that in November. Any one else experienced that. And for those that had lumpectomy do you wish they had done mastectomy. They have done gene test and I’m not brac so they won’t do it. Do they take them off if it comes back?. Shouldn’t have to wait till then. 
I’m very scared but got to do this. R x

[shellebelle]

I don't know whether anyone checks in to this thread anymore, but if you do, then I hope you are keeping well and have managed to enjoy a Covid free Christmas and that 2022 will be easier on all of us.

[shellebelle]

Merry Christmas to all crackers out there, I hope you manage to enjoy the day, whatever you do and wherever you spend it. 

Maire I’m sorry you had an awful time with treatment this year and that it had to be cut short, I can’t even begin to imagine how I’d cope with being faced with chemo again.  Not sure my body would take it. I hope you are able to move forward again and that 2021 will be much better, for you and everyone else too, it’s been a rubbish year all round.

I am still on hormone therapy and have 2 1/2 years left to go. It’s not been great, but I’m still here with NED so I’ve put up with the SE’s and just kept plodding on, even though it’s felt like wading in mud sometimes.

Wishing a much brighter 2021 to you all, take care and keep safe x

Michelle

[Mindy63]

Hi All,

A beautiful frosty Christmas Eve here in Scotland but what a year it’s been. My mastectomy wound is settling down 6 months after surgery after some ups and downs including a hospital stay with cellulitis.

Chemo was awful this time round. Maybe due to being a little older but it was a real ordeal and I spent most of it on the couch. I was admitted to hospital twice. First time was for antibiotic treatment for mastectomy cellulitis. The antibiotic treatment was very painful (flucloxacillan seems to burn my veins) and clyndomicin. The second admission was for chemo induced diarrhoea with temperature and raised heart rate. After that my onc decided to stop treatment. All this during Covid. So I had 4 out of 6 which feels a bit of a failure. I’ve put off taking letrozole until after Christmas to give my body a break. I am still v reluctant to take hormone therapy. In addition getting Zometa for 3 years.

Very much looking forward to Christmas this year with my husband and 3 kids who have all had negative Covid tests (phew). It will be 1 day of togetherness before they return to their student flats (albeit just a few miles down the road).

I hope all you Christmas crackers remain well. Sarah, I hope this year has seen your health stable and that you remain on top of things.

Merry Christmas to all. I have reflected on our journey and mutual support quite a bit in the latter half of this year and realise now what a special group we had. Take care and stay safe xxx

[shellebelle]

Oh Marie, I'm sorry to read your post.  I hope you recover well from your mastectomy and the path results give you some better news.  Fingers and toes crossed for you.

Sending gentle hugs.

Michelle x

[Mindy63]

Update: Just had mastectomy after new tumour appeared on other side. Awaiting pathology. Here I go again!

[Mindy63]

Hello to all who still pop in from time to time. Lovely to hear that Shellebelle has a grandchild. What brilliant news especially considering the trick fate played on us all.

Scary times for women going through breast cancer treatment during the current health crisis. It was bad enough in 2012-13 worrying about infection but it must be a horrifying ordeal at the moment.

I hope those of us still around are thriving. I’m guessing many of us will be missing our usual reassuring check ups and perhaps reflecting on our past travails.

All the best to you all and especially to those still receiving treatment ♥️♥️♥️

[shellebelle]

Hi everyone.   I got an email alert to say there had been a post on the forum, so have swung by to check in ahead of my usual Dec/Jan visit.  It's lovely that there are still some of us who pop back onto the forum.  I know most have left the forum and moved on, but I always think of my fellow Crackers around this time.

Sorry it's been a tough year for you Sarah, but also glad to hear you've had and still have options going forward and that treatment so far has had positive results.  The physical and mental strain you must have been under is such a burden to carry.  Fingers crossed you'll catch a break and be back in remission next year, like you say.  You deserve it.

My year has involved a second mastectomy (for symmetry) and I'm now completely flat, which I've gotten used to and don't miss the ladies at all.  I'm still taking Anastrozole - 3 more years to go.  The SE's have been worse than Tamoxifen, but still JUST about tolerable.  I'm due another Dexa scan to check bone density as pre Anastrozole I had osteopenia.  Half of me can't wait to finish the course and the other half just worries what will happen when I do.  A blood test in summer flagged up raised liver enzymes and after several tests and a scan, plus a fair bit of worrying on my part, it was decided that it was linked to my diabetes and nothing sinister, although they also discovered a polyp on my gallbladder at the same time, which is being monitored now.  My splenic artery aneurysm has remained pretty stable as has my BP and cholesterol.  I still have a Buddha belly, which refuses to budge and I have some arthritis which is worse this time of year, but the best news of the year is I became a Grandma for the first time and it's wonderful!!  

Michelle

[SP0]

Hello Crackers,

I'm checking in early this year, so I catch anyone who does, after new news last year for me...

Pleased to say I'm well although it's been a long year of active treatment again.  In Jan a PET scan showed activity in an abdominal lymph node, so radiotherapy following breast recurrence was put on hold.  Instead I did Vinorelbine chemotherapy - a much less awful experience than our various first line chemos.

My clever Onc got me referred for Steteotactic Ablative Body Radiotherapy, funded by an NHS commissioning study in the summer.  It's a very high dose, delivered a few times to a very precise area.  It reduced the size of the node by half, back to normal  so is presumed effective.

That's put the breast radiotherapy back on the table, so I'm doing it now, nearly 7 years since original diagnosis, straight to stage 4!

So I'm a bit ground down, but otherwise well, no rumours showing on CT scans and hoping for a return to remission on Herceptin and Letrazole only next year. 

Marie, I hope immunotherapy will be an option in future, but there's not enough progress for breast cancer yet.  There are other treatments still available to me later, including Kadcyla and potentially more SABR if the circumstances are right.

I know I'm a bit of an anomaly in our group, having been diagnosed with liver and lung Mets from the start.  I hope hearing my news helps.  Sarah x

[shellebelle]

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 🙂

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

[Mindy63]

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]

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

[Cybele]

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

[Pammyx]

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

[Cybele]

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]

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

[Trixielady]

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

[shellebelle]

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

[Pammyx]

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

[Cybele]

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

[Collies]

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.

[Cybele]

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..

[Mindy63]

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

[shellebelle]

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 

[Cybele]

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

[Lisalouw]

Spo not sbo !!!! Duh

[Lisalouw]

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]

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]

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

[Border_Collies]

I intended to come on here before Christmas but having just got another puppy life was a bit hectic to say the least.  I wanted to wish all the Crackers a Happy Christmas, but I guess that I'd now better change that to a Happy and Healthy New Year.  Lisalouw I'm so so sorry to hear that you are having to endure the whole procedure again. My stomach churns at the thought of it and of course ... there for the grace of God goes any one of us.  However well we are doing there is that fear tucked away at the back of our minds "will it come back?"   You say your chemo is finished but I'm wishing you all that I can for your op on 20th January. I really hope all goes well and that you can have peace of mind. Lovely to hear from Cybele and Maire as well and hope that the inactivity on the Thread means that most of us are doing ok.  My life has returned to normal and it all seems like a bad dream but now I have my mammogram and ultrasound scan to look forward early in February. I always dread that checkup and always fear the worst.  This thread got me through some awful days back in 2012/13 and I will always be grateful for the support of of all you lovely ladies. Good luck to you all.

B

[Lisalouw]

Thank you Cybele please keep holding me in the light as sometimes it's so scary it takes my breath away , glad you doing well and nice to hear from you , Marie lovely to hear from you too , sorry you having problems with the tamoxifen , hope you start to feel better soon now you stopped taking them , I'm just getting over a horrible cold , had my last chemo and got a lymph clearance on 20 th jan , my sentinel was positive , so please keep your fingers crossed for me for good results , my head is like a fizzy peach at mo which is new to me as didn't lose all hair last time so hoping it will start to grow back soon xxx

[Mindy63]

So good to hear from the Crackers of 2012. I intended to post on Christmas Day as I too was thinking of you all and will do every year as I pop my 'cracker' bauble on the tree. So sorry to hear if your recurrence Lisalou. Having a double mastectomy must've been really tough. I hope the op was successful and you are not in any pain. Hope too you are managing to endure the chemo
I have been a bit of a rebel and chucked the Tamoxifen after 2 years due to bone and nerve pain. That was 5 months ago. Sadly still flushing away and aches are ever present but luckily all scans are clear so far. Very puzzling. It seems the loss of oestrogen has hit me hard.
Hair also continues to thin despite stopping the pills. Woes aside I'm glad to be here and thankful for the support and laughs that got us all through those chemo days and nights three years ago. Good luck Crackers. Xxx

[Cybele]

Hello Crackers,

was going to log on to do a Christmas post, having been remembering starting chemo back in December 2012, but shellebelle and lisalouw have beaten me to it!

lisalouw - so very sorry to hear that you've had to endure chemo again. I know life isn't fair, but IT'S SO B****Y UNFAIR!!! Once is more than bad enough, twice is... there are no words, really, but I'm thinking of you and sending you a HUGE hug. When I was ill a Quaker friend told me she was 'holding me in the light', and I will try to do that for you. Let's hope the docs will manage to knock it on the head this time.

shellebelle - so glad that you're doing well, and have resurrected the thread - I think of you all often, and wonder how you're doing. We had some friends over the other day and I was telling them about the Crackers, and how much it had helped to have chemo buddies with whom to get through the experience. It is something for which I will always be grateful.

All is well here, so far - touch wood.  I am trying to enjoy every day of health as much as possible, knowing that the cancer could come back any time. I would never say I am grateful for having had cancer - I hated every minute of it  and I still think the treatment is barbaric - but I will never take good health for granted again.

And, of course, taking the wretched Letrozole every day is a constant reminder of still being in the hands of the doctors and held ransom by the disease. I have to say, though, that I have found the Letrozole much, much easier to tolerate than Tamoxifen, which I had to come off because it turned me into a mad witch. There are still mood swings, but not on the epic scale that happened with Tamoxifen, and the only other real side effect for me is aching bones in the mornings.

Wishing you all good health in 2016 and for many years to come xxx

[Lisalouw]

Thank you shellebelle , it means a lot , the crackers got me through some dark times the first time round and we even managed to laugh and rant at our horrible situation , it was such a shock though, also could not use cold cap this time so bald at mo which is a novelty I don't want to repeat , also opted for double mastectomy , my choice , I'd only just got my hair to where I could put it up in a bun too , grrr , god dam cancer , very frustrating , nice to hear from you though xxx

[shellebelle]

Oh no, I'm so sorry to read your news Lisalouw. Having to face chemo again must have been awful, so I hope you had and are still getting all the support you need now your chemo is finished. Fingers crossed this time round you will be rid of the evil "C" for good. I'm sure if any of the other Crackers stop by, they will also want to wish you all the very best too. Once a Cracker....always a Cracker!!! xxx

[Lisalouw]

Hi shellebelle , glad your doing well apart from the side effects of tamoxifen , I didn't want to post on here as I didn't want to scare anyone , but I've had a new recurrence , I've just finished my chemo , so I'm actually on a new thread , chemo aug 2014 , it's not any easier the 2nd time round , Lv and hugs to you and anyone that pops in , hope you all had a good Xmas and wish you a happy new yr xxx

[shellebelle]

Well, I may be posting entirely for myself to read as it seems this thread has just about been resigned to the archives, which is a little sad, but must mean everyone is doing so well that they no longer feel the need to revisit and that's no bad thing really.

However, just in case anyone does pop by, I will wish you a Very Happy & Healthy New Year for 2016. I always think of the Crackers at this time of year and those who are no longer with us.  

Not much has changed for me over the last 12 months.  I'm still popping my Tamoxifen pills and putting up with the aches, pains, thinning hair, dry skin, flaky nails, flushes and 'hit and miss' memory that go along with it.  My next Oncology appointment is in May and perhaps, if I'm deemend to be post menopausal by then, I may be put onto an AI instead of Tamoxifen.  I don't think that's anything to look forward to .....but hey ho.

All the best.

Michelle  xx

[Cybele]

Wow it took me ages to find our thread - which I suppose is a good thing, as it means we're all getting on with our lives, but I miss the Crackers! I just logged in to do the password change they required, so it seemed like a good time to say hello again.

I'm well (touch wood) and enjoying life - recently taken up cycling again after many years, because we're now living near to the Thames towpath in north Kingston, so I can ride for miles on the towpath, or in Richmond Park and Bushy Park, without having to go on the road, which is wonderful.

Still struggling with the side effects of Letrozole, mainly aching bones and tiredness, but now the cycling is making me aching and tired in a rather more productive way!

Hope you're all well, too.

Caroline xxx

[Lisalouw]

Hi everyone , I know it's been a long time , I'm back at work full time and I'm a single mum to a gorgeous 5 yr old with a mortgage to keep , so I don't seem to find time to breathe some days , I'm so shocked and saddened about QD , she helped me through some dodgy times on here as you all did , she made me see things clear and calmed me down , also made me laugh , my thoughts keep coming back to QD, so awful it really is . I've had 3 lots of fat necrosis since diagnosis and having a what they think is the same removed on 25 th feb , I've had it ultrasound but not biopsy , so I'll be glad to get that done , I'm glad you had your clear mammograms , but I'm the same with not believing and wish they did ultrasound as routine , maybe it's just my other paranoid self talking , I will try and be better at popping in from now and again and catch up more , lots of love Lisa xxx

[Border_Collies]

Maire - So sorry to hear about your sister having a recurrence after such a long time.  I do hope all goes well for her.   I can also appreciate how much this has affected you and your anxieties if you have gone so far as to consider a mastectomy.  Nobody makes those decisions lightly.

If you cannot get the NHS to agree to an ultrasound, have you considered having one done privately?  I have just Googled and it looks as if, depending on which hospital you go to, a two breast ultrasound costs between £210. - £410.  If you could afford this it would probably give you so much peace of mind.  Having said that, I think you should be able to get it on the NHS so must be worth having a go.  It's not nice hearing that you are so worried still but really happy for you at the result of your mammogram.

B

[Mindy63]

Yes, got my results very promptly and all ok but I just have no faith in them. The doctor said that ultrasound wasn't useful unless there was a genuine area of concern. I think I'm going to try the broken record technique and keep asking for an ultrasound. I am even toying with the idea of a double mastectomy as my sister has now had a recurrance after 16 years! I'd rather not have the constant worry and stress.

Anyway glad to hear you got all clear BC!

[Border_Collies]

Hi Maire - Seems ages since we spoke. 

Like you my tumour didn't show up on the mammogram but was clearly visible on the ultrasound scan.  I was told that from now on I would have to have the ultrasound at the same time as the mammogram and this was done in January 2014 and 2015 and for the foreseeable future.  My surgeon said that she didn't feel we could rely on a mammogram result to prove there was no recurrence. I should mention that my treatment has been through BUPA throughout so maybe that is the reason.

Have you got your mammo result yet?  It's a horrible time of year isn't it when we have these check ups. I had convinced myself that after the appointment I'd be staring the dreaded chemo in the face again so it was a wonderful feeling to know that I was still ok.  I was lucky that I had the mammo and the ultra sound scan plus two visits with the surgeon all in 30 minutes with the result given there and then so worry was over.

If you haven't got your result I really hope all is well.  Let us know.

B.

[Mindy63]

Great news. I had my second annual mammogram last week. I did ask about ultrasound but was told it wasn't really an option. As my tumour never showed up on mammogram I would have been more reassured by an additional ultrasound. Why did they give you yours BC?

[Border_Collies]

After a week of anxiety, panic attacks and sleepless nights I today saw my breast surgeon and had a mammogram and ultrasound scan for my second annual check up since my lumpectomy.  Got immediate result of mammo and scan and was told that there was no evidence of disease and so I was clear..

I cannot describe the relief. Even though I had no symptoms of a recurrence I had more of less convinced myself that the scan would detect something horrible under the skin ... I'm such a pessimist and a worrier.

So I'm about to have a "big drink" both in the way of celebrating and to help ensure a better night's sleep, though that might not be so much of a problem tonight.

Good luck to anyone else who is about to undergo their annual check up ... everyone must go through the same anxieties that I did.  Also I hope all the crackers are feeling well and getting themselves back into their lives.  Thinking of you all.

B.