Bone mets - please join in

[rosie53]

Good for you Suez, sometimes we just have to listen to what our bodies are telling us! No good running yourself into the ground just to keep things "normal" just take things at your own pace.
Hugs Janette xxxx

[Suze57]

Today, I've thrown in the towel at work and I'm taking some sick leave. I'm not sleeping and struggling to walk. Everyone at work keeps telling me to take a break so I'm sitting on the settee with my leg up in my PJs. 

[nicky08]

Great news Suze. If they do find anything in the scar tissue/original site they can either treat it with the same combo you're on for the bone mets and therefore not change anything at present or possibly decide to operate but often they would want a period of stability before rocking the boat so to speak. Obviously if nothing shows up and it's just scar tissue then you know you're only dealing with the two spots on the spine.

Marie Louise, I was on zoladex and tamoxifen after my primary and boy did my ankles ache first thing in the morning! I was only 41 but creaked like an old woman. When zoladex was stopped after the 2 year period I was due to be on it for the aches did clear up even though I was still on tamoxifen so that drug might be the culprit! Not much you can do about it when we know that we need to take the drugs but the side effects often cause problems in themselves. Also it might be worth noting if the aches have become worse recently and linked to a change of brand of your tamoxifen? I know I suffered extra side effects whilst on anastrozole and letrozole (at separate times) once they came out of licence and were manufactured by different companies. I never knew which brand I'd get but kept a note of the ones that caused me more problems and got my pharmacist to make sure I didn't get them again.

Nicky x

[bonariensis]

Great news Suze, hope you find a good way to celebrate,

Maria Louise, I'm on exemestane and denosumab and my feet do exactly the same as yours though it does vary a bit depending on when I;ve had denosumab. Sometimes i hobble around with a stick and other times i can zoom down the road (well sort of) 

B xx

[Rose47]

Hi Janette, I was getting worried as it's such a scene getting down the stairs first thing in the morning !!  I just hope there is never an emergency that involves moving quickly ha ha.

Suze, what a relief for you .... Now you can breath.  I would probably have hyperventilated if my results had been moved forward so well done xx

[Hayeswen]

Excellent news , treat yourself x

[Carolyn52]

Suze
Brilliant news ..whoop whoop ..now treat yourself to something nice ..a vino or takeaway perhaps .
Sometimes around a op site ..there is a bit of rogue tissue that flags up but don't worry too much ...I got recalled twice after mammos and it turned out to be nothing.
I think we should all fill our cyber glasses with cyber vino and do a cyber Mexican wave .....1 2 3 ..here we go !!
Hugs xxxxx

[rosie53]

Hi maria Louise, I'm no longer on tamoxifen but am on letrozole and denosumab and I always seize up when I've been sat /lay for any amount of time, I'm fine once I'm up and walking about though.
Hugs Janette xxx

[rosie53]

Yeyyy SUZe57 , that is fab news, bet that is such a relief! Like you I would have also been stressed out being called to come in earlier than my appt date!
Hugs Janette xx

[Suze57]

Woo hoo! No cancer spread. Just two small spots on spine. They have spotted something small on reconstructed site so scanning that on Friday Thanks Csrolyn for holding cyber hands. It worked! Xx

[Rose47]

A big hello to everybody on new Treatments, Stable Mables or awaiting Scan results.  I do frequently read the forum and keep up to date with everybodys ups and downs.  I am just wondering if anybody has experienced a problem I am having at the minute.  I am on Tamoxifen and Monthly Zometa injections and my feet are aching.  When I wake up in the mornings it takes a while to be able to walk about properly and then if I sit down for any period of time during the day its the same when I get up to walk about.  Once I am up and running its ok until the next time I sit down !!!  Could this be due to the treatments I am on or is it just "one of those things". 

I know we can still get aches and pains as normal but I do panic when something starts to ache nowadays.

[Carolyn52]

Suze. .try not to worry ..the oncologist might be going on holiday and trying to get things done before he goes! That happened to.me once after I sweated and stressed .
Please let us know how u get on ..but we are holding our cyber hands together for good results .
Hugs

[Suze57]

Don't no whether to worry or not. They've called me in for results a week early. Come home and just waiting for partner to come with me to the hospital. Tune in later for another installment...

[Carolyn52]

Thanks Nicky for explaining the workings of the Bone juice ..I'm afraid when I go hospital I turn into a quivering wreck ..just want to get out so don't ask questions !!!
Bathrooms are like handbags and shoes ..you can never have enough so enjoy the luxury of an extra one.
Glad u are still keeping some hair ....obviously no highlights or colouring for you at the moment !!
Hugs xxxx

[nicky08]

Btw the blood tests for calcium levels are because Denosumab works by taking calcium out of your blood and depositing it in your bones, unlike bisphosphonates which work in a totally different way. I had it explained to me early on when I changed to it in 2013. If the calcium levels get too low you are at risk of breakages etc, AdCal is automatically prescribed to counteract this. My calcium levels have remained completely constant and in the normal range all this time although I don't take the AdCal supplements. My onc now knows not to bother prescribing them as I had to keep giving them back, I guess my diet is high enough in calcium to support this. I also was told that the calcium levels can drop dramatically and very quickly which is why the blood tests are carried out each time you are prescribed Denosumab.

Nicky x

[nicky08]

Hi Carolyn

Well, fingers crossed its working! The main side effect is my hair thinning dramatically but everyone else seems to get that at the beginning but it then stops falling out. I will have to wait and see. If it gets any worse I will definitely shave it off as the straggly Bobby Charlton look is not a good one! For now I have been wearing soft wide hairbands which hide the thinning on top, the back looks pretty much OK and only I know how much I have lost! The plumbers are fitting a completely new bathroom into a small bedroom that wasn't being used so I hope there aren't any leaks! However they have a habit of turning up later than expected, or not at all - what a surprise! Of course yours truly has to wait around for them and therefore is basically house bound for some if not all of the day. Very frustrating and I just hope they don't drag it out too long, I'd set aside about 10 days so I don't want them to be much longer as there are things I need to get on with. If treatment goes ahead this week, dependent on bloods, we are aiming to go away for a short break between cycles which will be very welcome I can tell you!

Nicky x

[Hayeswen]

Suze

I must admit I found it a bit confusing at first seeing loads of different people and scans. I never had primary just secondary. I had everything backwards because I started with MRI for hip pain and bone and CT scans and then biopsy which then diagnosed my SBC. I have just finished surgery for masectomy and recon and radiotherapy for my hip. I am now awaiting to be scanned for hip again and then my 3 month scan will be due . Like you I take hope from the others that it will get better as we get used to it and hope for some respite . Take care Wendy x

[Suze57]

How lovely to have your family with you Hayeswen.I've not had anything other than Letrozole. They took the bloods so that I could have the CT scan. There not expecting to find anything but they weren't expecting to find any bone mets so will wait and see. Not seen oncologist yet. My appointment is with breast consultant. I will have to learn to be patient. Thank you for sharing your story with me - it does help. Xx

[Hayeswen]

Hi Suze

I think if you take adcal and have Denosumab injections they monitor your calcium levels. My secondary diagnosis was in Feb and I was given these straight away and told my blood would be taken every other month to monitor calcium levels. I have had 3 injections to date and a bit achy afterwards but ok. As for CT scan results I have my fingers crossed for you as I had mine on my birthday and we all went as a family and held hands whilst my Onc updated us. I can't explain the relief when it was clear we then all headed off for birthday brunch. Hoping you get a clear run too x

[Carolyn52]

Whilst I'm here ...Nicky how are you now with the new chemo regime ? Hope the side effects are getting less as time goes by.
Maybe a nice little holiday is needed now after the plumbers have done their magic. Bet within an hour of the plumbers finishing you get a leak and have to call them back!!
Hugs xxxx

[Carolyn52]

Suze
I don't understand the calcium thing either ..I take a adcal tablet daily and up to now my blood tests show calcium levels spot on.
I think ( not sure as I'm a numpty) that either high or low can be quite serious hence the reason they monitor us so.much.
Oh dearie me ..another week of scanaxiety then for you but I'm sure your job and all those kids will keep your mind busy.
Hugs xxxx

[Suze57]

Thanks Carolyn (that's my sister's name), My scan results aren't til next Tuesday but I'll let you know how I get on. I'm a bit confused about the calcium in the blood thing. Apparently, my bloods don't show calcium but I don't understand if thats good ro bad. 

I've been told that if my CT scan shows nothing else, I will probably have a biopsy on the spine mets. 

Sue x

Feeling a little happier now I have my special lesson planned. 

[Carolyn52]

Hiya suze
You have to try out the different brands of letrozole to find the best one that suits you ...the difference in brands is huge.
Just sending hugs for your scan results tomorrow .
After I did five years and then ten years clear I thought I had beaten this cancer lark but a few of us are unlucky and our unwelcome visitor comes knocking again.
I was told at primary ...my bc was a lazy one and given 84% of survival ( I later realised this is based on a five year survival figure)
Anyway ..hope away from all the drivel I post here ..you find some help and advice.
Hugs xxx

[Suze57]

Thanks Nicky, I'm sure I'll feel much better once I get results on Tuesday and know what I'm dealing with. I've always put 110% into my work and am learning (or trying) ro not stress too much. We finish for half term a week on Friday and we've booked a cottage with a hot tub in Wales for the week. I just keep telling myself to get next week over with and then relax. 

I work 4 days which I've already decided to reduce to 3 in September. Was given the letrozole two weeks ago and the new pack I started on Friday is a different brand. I had problems like that with Tamoxifen so I know what you mean. I'm picking up lots of goood tips on here and support and hope I will be able to return this.

Mine was grade 2, which I was told was a 'plodder' and even the consultant was shocked to find it had metastisise. But it is what it is and life has to carry on with as positive an approach we can.

You have made me feel much better. x 

[nicky08]

Hi Suze

Im sure the letrozole isn't helping with the tiredness, it has a lot of side effects which we have to put up with, after all it's the drug that should be kicking the little critters into touch! Different brands also seem to give extra side effects as well. I have found this out over the years as I have been on both anastrozole and letrozole at separate times of course. Certain brands gave me so many more side effects so it's worth making a nite of any different ones you get given and note down how you feel. I also think coming up to a scan, and the results, is also a very draining time. Of course you don't want to think about it but invariably you will, it's human nature I suppose. I tend not to worry about the scan itself, after all it's just a medical procedure, but results day is a different story! However over the years, and I can't count the number of scans and results I've had, I don't stress as much, especially once you get a good/stable result under your belt. I find if I have started a new treatment then I do get more stressed until I know if it's working or not. If it is I feel I relax until e next scan in 3 months or so. When I was on hormonal treatments and getting very good stability my scans were pushed out to every 6 months or so and that also helped but initially they tend to be 3 monthly or after so many cycles if you're in chemo.

The added pressure of being observed for your job can't help you either! I wasn't holding down a particularly pressurised job when i was working so can't imagine how much extra pressure you're under right now. Hope it all goes smoothly and your aches etc get better.

Nicky x

[Suze57]

Nicky, thank you for those positive words. I seem to be mirroring your experience though a few years behind. I'm terrified of what the scan will show next Tuesday and every little pain and spot is being exaggerated. There, I've said it. I'm trying not to think about it but even dreamt about it on Saturday. Like you I felt like I had only a few months, but you fabulous ladies are telling me there are more positive outcomes. 

Feeling very tired today and don't know if it's the letrozole, the shock or just overdone it yesterday. Frustrated that I can't walk very far without stopping to rest. I have lessons to plan and am being observed on Thursday as an example of good practice in maths teaching. This is distracting me and a boost for my confidence but feeling old and weary. Is this normal? X

[Carolyn52]

FF
What a special day for you and glad you liked the day out ..I'm not good on boats at all .. !! Ever since I watched Titanic!!
A long day for you though and no doubt you slept like a log when you got home
Hopefully your new treatment will be easier on you too.
Xxxxx

[nicky08]

Hi ladies, especially those who have just had treatment for primary BC and now faced with the worry of 'what if it comes back'. Back in 2003 when I was treated for my primary I didn't actually think it would come back, I thought I was 'cured' . Unfortunately at the time  a major cancer charity was running a tv campaign telling everyone they WERE cured - rather than in remission, which is what we know these days. I'm glad I didn't spend the interim years, nearly 5, worrying about it coming back. What is the point? From what I have read, and I've read a lot about cancer and why it acts as it does, it will come back if it's the type to come back. Whether it's aggressive or, as mine was, low grade, early detection etc. There was nothing I could have done either lifestyle wise or treatments to have prevented this happening. So, like the other SBC ladies have said, I got on and lived my life and certainly didn't worry about it coming back. The real wake up call came when I was diagnosed with bone mets in 2008, I really did think I had months to live. As you can see I'm still here! Then I did make big adjustments to do the things that were/are important to me and really appreciate every day as it comes. If you can embrace that thought having just got through primary treatment that's even better, you will enjoy your lives so much more and not 'sweat the small stuff'. 

FF your day sounds great and what a treat, even though it was a long journey and trip out to sea. How nice to be by (on!) the ocean, all that fresh air, and to see such lovely creatures. A few years back we had a holiday in South Africa and spent a lovely Sunday sitting on the shoreline watching a few whales playing in the bay. Which was great as I didn't need sea sickness tablets to see them ha ha.

Have a great week everyone whatever you are up to. I am still housebound as we have plumbers in, finishing off a bathroom. Don't you just hate being tied to the house all day? There's too many odd jobs looking you in the face, I'm trying to ignore them!

Nicky x

[Suze57]

Very jealous FF. Sounds amazing. Glad you had such a beautiful day. X

[bonariensis]

What a lovely day FF. Well done your kids! Mother's Day is earlier in the year here. It sounds a long day, glad it was doable. Maybe seasickness prevention is a surprise se of e&e? Hope you are feeling OK

Back in April, a humpback whale visited Start Bay, our nearest bit of coast, for several days, Hundreds of people turned out to watch but then its larder moved away. Luckily it's only a 20 minute drive.

B xx

[funnyface]

Had a beautiful day for Mother's Day. My kids took me on a whale watch off the New Jersey Coast. It is a 3 hour drive each way and was 3 hours on boat. Yeah me no sea sickness!! I've never been out without dramamine, but didn't want to take it with my new meds.My son and daughter took it and still didn't feel well. We did see one hump back whale. It was just so relaxing and gorgeous out. Plus it was something I was capable of doing! My SIL made a  nice cedar planter box for me. FF

[PMOL]

Hi Carolyn! Yeap... i tend to nap every day when I come back from work! At least 30' but today just spent 1h completely gone 😴😴😴 I blame the treatment as still (for a few more days!) in. my 30's! 😉❤️❤️

[Carolyn52]

Moijan ..I'm.ok with the site ..I think!

Pippin : another daytime sleeper .if I fell asleep during Jeremy Kyle ..it would be acceptable but its always " escape to the country" the programme where people pretend , never buy but just want to be on tv and get a free couple days holiday !! Ha ha.
Also, why are the houses so immaculate? Don't people sleep in the beds, use the kitchens or bathrooms? Or leave wellies/ shoes in the hallway with stinking football kits in sports bags??
Xxxx

[Moijan]

Cyber attack..?

[Moijan]

Had typed a post but it bggrd off, so was wondering..,.,,,it is so difficult to log in at present....do we think the site is cyber attacked?

[Moijan]

Dear DJD 

hi ladies, I SO  agree with Carolyn, you are very sweet to be concerned about us, but you need to move on

I was treated for my initial, poor prognosis primary in 2001..... And I too had 10/12 years NED.

Imagine how very sad it would have been to spend those years worrying about the future...I learned to sing, learned to paint, became an NLP practitioner and learned loads of other things.,,,,...try to feel blessed now, with another chance, another go at doing the stuff youve always wanted to do xxx

very best wishes,

Moijan💚💚💚

[Pippin]

Hi Carolyn

Yes, not so much naps as sleeps! I can nod off for three hours maybe more at the dop of a hat. Always could nap but since chemo 3 1/2 yrs ago 30 mins is not enough. It plays havoc with body clock since I am frequently then wide awake till 4 am! It's v disruptive and I'm not sure how to best manage it.

Pippin

[Carolyn52]

Hello ladies
Does anybody have daytime naps? I've never done before but the last week ..I lay on my bed afternoons .pop on tv and boom boom ..asleep for 30 mins or so!
Is this just a growing old thing ? Or a cancer thing?
Hubby can nod off 3/4times a day in his chair and I normally tut ..but now I'm becoming a "power napper" too !!
Xxx

[Suze57]

Yes, Optimissy, I agree cancer can be a wake up call.I was diagnosed in 2007, having found my lump on my 50th birthday and like Carolyn, I had a long period of NED. Now, as a fluke, I've been diagnosed with secondary bone mets. Cancer taught me to look after myself, it gives you new values. I'm an optimistic person usually and once the little sods came back, I realised it is what it is and know that there are treatments out there to help. Cancer taught me that I am beautiful! It is hard to stay positive - I've just had a couple of low days but then I had them before the cancer. Try to live for the day and don't listen to th st devil on your shoulder. As Carolyn said, treatment for prime cancer has improved greatly and they are learning more and more. I like to think I'm a pioneer for treatments that one day my children will benefit from, should the need arise. X

[Optimissy64]

Thanks Caroline. A very positive post. So glad to hear you have done so well for so long. I'm pretty philosophical about it all most of the time and fears do not dominate, but I think at this early stage post-treatment most of us will have the odd "what if" thoughts now and again, I doubt we'd be human if we didn't, but I certainly aim to appreciate "what is" rather than worrying about "what isn't". In an odd way, my cancer could have been a bit of a wake-up call - I've made a couple of lifestyle changes, and  another will occur before the end of the year. Thank you so much for posting and best wishes for your ongoing treatment.xxxxx

[Carolyn52]

Hello ladies
Welcome ...I understand your fears as I remember feeling the same at my primary in 2004 but you have to try to rise above it all if you can. The primary bc treatments are so much better and thorough now ...a lot more scanning etc is done.
I had eleven very happy healthy cancer free years before mine came back in my bones to party ....during this time I worked full time ..became a nanny three times ..took nice holidays etc etc so try not to let cancer fears overshadow your life ..I know its easy said.
Hugs xxxxx

[Optimissy64]

Hi DJD - I'm at much the same point as you are - WLE & SLNB, radiotherapy ended Feb and now on Anastrozole. Feeling lucky that it was picked up early etc. but also sometimes have thoughts about recurrance or SBC, and wondering how I would know I had it if I felt well, as I did before diagnosis and do again now. I'm pretty sure that after treatment that is the number 1 concern we all have, and just this morning I was thinking that from now on all future plans seem a bit "provisional". Being, like you, a "glass half-full" type, I came to the conclusion that I am actually in no worse a position than I was this time last year when I had no idea I would get BC, 'cos all plans are provisional for everyone- we really could get knocked down by a bus, that old cliche, or be on that holiday flight that disappears into the sea, and lately aquaintances around my age - 60s -are dropping like flies of all sorts of horrible, non-cancer conditions, so on balance I'd rather have had mine right now. I think these thoughts we sometimes have are normal and I'm sure that over the years as we get our routine annual mammos done they will recede a bit. I guess we just have to get on and book those holidays, get that dog (in my case) and enjoy today. I suppose it's all part of that process that we have been going through. Enjoy this sunny (where I am anyway) Sunday. xxxx

[DJD]

Posting here as it's such an active thread!  I'm just coming to the end of active treatment for E+ BC.  Had mastectomy, RT and now Anastrazole.  Know I'm very 'lucky' as it's the best cancer to have!  My prognosis stats are excellent, so why am I so anxious about SBC?  My BC was picked up at routine mammogram.  I had no signs of symptoms.  How will I know it's come back?  Family and friends are considering me to be cured, so why do I keep mentally adding, 'for now'...  I'm normally 'glass half full' person. 

[Moijan]

Hi Crissy,

i agree with the others, go on your trip. Wear your flight socks and sleeve( I also have arm lymphoedema) took my o/h to oz a few years back and insited we have a walk every hour and do our excercises!

Was on a jumbo then..and at the back found a whole row of fellow travellers all doing their excercises....also took small doses of aspirin , but now on blood thinners, so cant do that, but next time will still do regular walks and drink  loads of water.  Xx

i hadnt had a dvt flying, but got one since, whilst on Cape....the trick is to be as mobile as poss and drink loads of water...

Best wishes, enjoy your flightxx

Moijan💙💙💙

[crissy]

Bandit. Great that you are on this trial and following the guide lines. 

I Googled it and it seems to have good feedback and working well.

Goodnews that it is now available on the NHS and so it should be, thank you Pfizer.

Hope all goes well, keep us informed. xxxxxxxx

[Bandit]

We all start of frightened but within reason I just carry on as before. I have 3 onc's dealing with my case & I loved the advice one gave me when I asked about massage etc which was "have what you want but don't tell the therapist you have cancer 'cause they won't treat you". I am on a drug trial which was they only way I could get Palbociclib (Ibrance) in the UK although I understand that it is available now on the NHS paid for by Pfizer but as you are on your good regime this is currently not of importance to you. Being on a trial means that they are very strict & I can't even pop a vitamin pill but while it's working I'll do what I am told - well almost. Xx

[crissy]

Hi Bandit,  Will take your advice about the socks.

I think I am panicking as I don't know how the bone cancer if going to affect me in the short/long term.

I have cancer in about 7 places down the spine and 3inch dia on my scull.

I have Lymphedema in my right arm so the the sleeve is on most of the day. It's my popeye arm, without the anchor tattoo.

Your right this we should get out and do whatever, live life to the full, but just a bit frightened at the moment.

xxxxx

[crissy]

Hi funnyface, thanks for the info.

We booked a Carribean cruise just after christmas to travel in November, before all this crap started .

It's for my hubby's 70th in November and we are due to fly from Heathrow to Miami, 8-9 hr flight. 

After hearing about the DVT problems we both said we should cancel it but it's for a special birthday and he deserves it as he has been my rock. We have until  August to cancel it so we will see how things go and decide then.  xxxx

[Bandit]

Hi Crissy. I don't often post but do occasionally lurk hoping to see that everyone is doing ok. I have monthly Denosumab jabs & also have done 8 cycles of Letrozole & Palbociclib. I often fly and in fact am currently in Miami. To get to LHR from where I live in Wales also involves a 2 hour car ride each way. One of the s/e's of Palbociclib can be a DVT. I get my compression socks from the chemist (your Dr will give you a prescription) & you need to measure your lower legs to get the right fit. If you have had lymph nodes removed I would advise a lymphedema arm sleeve for the flight. I feel it is important to continue living as normal a life as we can. I have mets to almost all my spine, some ribs & sacrum but take pain relief everyday and go out and do what I want/can. Enjoy your holiday. Xx