Bone mets - please join in

[Moijan]

No Bentsen, if you want you can read the post a bit further down

after I had been on it for a few years, I found the pharmacy would get the cheapest, did some research and spotted Sandoz was made by the same company -  then Boots were getting the Sandoz one for me on request...they won't now. Sorry

Moijanx

[Benten]

Hi Moijan

Did you have to try the generic brands of letrozole before they prescibed femara?

Benten.x

[funnyface]

Riversidedawn, I'm sorry I haven't welcomed you yet. I'm Funnyface and from the USA. I live in Pennsylvania and live about an hour west of Philadelphia. I had my  primary cancer Fall of 1995! Then 10 years later found out it set up camp in my lungs. I've now had secondary cancer for 12 years. I've just had a set back and need surgery for 2 fractured vertebrae. I've been trying to find out why I've been in so much pain for soon to be 3 months. Finally the MRI showed the fractures. Surgery is next week if I can get pulmonary clearance for sedation. 

I'm sorry you had to join us. There is a great deal of information and understanding by all these lovely ladies. It Is so nice to be able to come here for support . It is a great place to vent and give our families a break. It is very difficult to hear things one by one as they find them. I think it would be much easier to have all the scans they think we need. Call us in lay it all out on the table and give us our an of action. Do not get discouraged if their first plan doesn't work. It happens. Also hormonal treatment can take a bit to show if it's working. The response isn't as fast as chemo. There are a lot of options in the doctor a bag.  

I wish you the best. DR

[Carolyn52]

Hello riverside dawn

My heart goes out to you as these bombshells keep getting dropped on you ..it's always a shock to hear about extra things when u r still trying to take everything else in ..
Up to now I thought I was just bone mets but oncologist sort of mentioned a few weeks ago the adrenal glands were responding well with letrozole. .I had never heard of these ..thought they were in my b u m hence the reason i fidget so much until I Googled where they are !! Sometimes ignorance is bliss though ..I try not to Google too much about stats etc ..this disease is what it is ...
Xxxx

[riversidedawn]

So I saw the oncologist yesterday who confirmed a 2-3cm tumour in vertebrae T12 and discussed various options for treatment. Then he dropped the bombshell that the MRI showed something in my pelvis/pubic bone too, so that changes treatment options. He's booking another much more detailed MRI at Mount Vernon cancer centre which hopefully will happen before Christmas.

Came away with a bag of hormones which I'm going to try again and see what SEs I get this time. Must have a look at the brand names...

[Moijan]

Hi Maggie, yes, but Fulvestrant hasn't been approved for general use it too, is a kind of endocrine therapy...for mets Ladies. Moijan😀😀😀

[Moijan]

Yes.!  Carolyn, I spotted that when I was taking it, Sandoz address is exactly the same as Novartis and it did cost about £10 pm..whereas all the copies range from£2-4 per month.

another interesting fact..nothing to do with letrozole, but Sandoz make several antibiotics, I was on pen v and Sandoz pen v  had much less side effects. I also occ have to take clindamycin and Sandoz version is kind to the bowel, whereas others gave me tummy aches.

I now try and get Sandoz versions when I can - they are more expensive tho...Boots tell me they don't stock clindamycin by Sandoz for that reason..and they were stocking Sandoz letrozole,...but don't now! Just for a few pounds profit!

the drug companies have a lot to answer for!

Moijan👺👺👺

[Carolyn52]

Hello Benten

Glad to be of help ..hope Sandoz is kinder to you with side effects. .it's having quality of life as well

The pills take 6 weeks to start working so u should be ok over xmas at least ..
Xx

[Benten]

Carolyn you're a star. Perfect timing. Phoned chemist today and still no joy with Accord. Told me the names of a couple of brands he had in stock. Got home from work and read your post. Chemist is open until 7pm. Straight in the car and home with Sandoz. Popped the little orange pill, sat on the sofa for 10minutes waiting for a side effect, got fed up with the One Show and took the dog for a walk. Decided to start Sandoz straight away because I would just worry about it and convince myself I would be miserable over Christmas. 

This is what I love about the forum. Always somebody there for you.xx

[Carolyn52]

Hello maggie mac
Thats good news for the Scottish ladies ..it's still a minefield in England who gets it and who doesn't still !!

[Carolyn52]

Hello Benten again


On the hormone therapy thread. .a lady recommends "Sandoz" brand of letrozole as it's made by the original Femera and nearest to the original ..she says she feels much better .
Hope it helps xx

[MaggieMac]

I've just heard the good news that Palbociclib has just been approved for use in Scotland - and if I've read the press release properly it's for use with an endocrine therapy or, following that, for use with Fulvestrant. 

Hope that NICE recommends it too for use with Fulvestrant as more of us would then have a chance to use it.

Maggie

[Moijan]

Try femara if you can...it's £90per month tho.....

good lucknwith itxxx

Mo8jan💖

[funnyface]

Unfortunately there is choices to be made. Each of us are unique in our responses. When we make choices about treatment the professionals and us are trying to make the best educational choice we can. There is no guarantees. We can not beat ourselves up. We can just keep trying and hopefully enjoying whatever time we have. Hugs, ladies! FF

[rosie53]

Totally agree with you Windflower!!
Hugs Janette xx

[windflower]

Hello all,

I don't post very much, but read everyone else's!  On the question of blame, I had a lumpectomy, radiotherapy, "mild" (tablets) chemotherapy and then Tamoxifen for five years.  Cancer was found at first mammogram in 1995.  After I stopped Tamoxifen I was discharged and my cancer didn't reappear until 2015.  I couldn't believe it!  It was in my peritoneum and then I was found to have multiple bony metatstasis which had obviously been there for some time.  So breast cancer can stay hidden for a long time and then be found again.  I do wonder if "stronger" chemotherapy, infused, would have caught everything, but at the time I think I was thought to be at low risk, and only had the "mild" chemotherapy because I was "peri-menopausal".  Otherwise I would have gone straight onto Tamoxifen.  However, I haven't had any progression for at least a year, I would say more like two years.  I don't think anyone can be blamed or blame themselves.  It is just such an insiduous little blighter.  We now know that it can stay hidden for many years and none of us can be safe from it.  We just have to live our lives as fully as we can and be aware we need to be vigilant (which I wasn't).

Windflower

[Kate21]

Hi again Riversidedawn, you make a very good point, I’m sure some treatments are trial and error and seeing/hoping they work, as with many illnesses one size doesn’t fit all but since the late 1990’s early 2000’s when stem cell involvement was identified and much research started in that field, from what I’ve read and been told, if there is stem cell involvement then sadly it will increase the risk of recurrence and it isn’t just down to luck. Kxx

[Carolyn52]

It's the same with survival rates with secondaries. .some ladies here live with them for years ..some don't survive very long ..we have to remember forget stats on Mr Google. .everyone is individual and responds to treatments differently. ..
We all get good days and bad ones ..swings and roundabouts xxxx

[Benten]

Thank you Janette and Carolyn for your replies. My Mum was on letrozole for five years and took any old brand. She couldn't tell the difference. She can't understand what I am going on about.   My local chemist is excellent and I have used him since the kids were babies. He will even phone me to say if he is having difficulty getting something. Will just need to keep my fingers crossed he manages to get them or I could just ask Santa.xx

[riversidedawn]

Thank you ladies. It really does seem that some of the treatment is still guess work. Some have loads of treatment surgery, chemo, rads, hormone treatment and it comes back, others have surgery and never see the pesky blighters again. Who knows? Guess we have to take it day by day x

[rosie53]

Hi, sorry can’t really help with letrozole brands as I am on the branded Femara, and your prescription must say Femara for pharmacy to give you that brand.
The only explanation I can give though is that I do know that sometimes pharmacy’s genuinely do struggle from time to time to get certain brands due manufacturer being out of stock, shop around though to local pharmacy’s your not obligated to a certain one!! Some are more accommodating than others, where I work we really try hard to ring round all our suppliers to get certain brands but I know some (usually “chain pharmacies”) aren’t very helpful, independents are always a better option! Sorry I can’t help anymore than that!
Hugs Janette xx

[Carolyn52]

Hello Benten
DON'T accept Cipla brand ..I think there is Teva , the real Femera and Dr Reddys ..I have Accord and Boots order it for me and I won't accept anything else ...it's your body and you have the choice ...
I'm sure Chemists every where must be stock piling Cipla as no one wants it! !
Actally. ..Jeanette here works in a chemist ..she might be able to recommend some other brands you could try ..
Hugs xx

[Benten]

Hi Juma

I had a zometa infusion in July when I started treatment. Was okay for a couple of days and then my met started to hurt. It went on for about three days then felt fine. It did make me tired for a couple of days. I only had the one infusion because I was changed to monthly denosumab.  Neither up nor down with that.

Girls can I please have some advice about letrozole.

I have a week's supply of Accord left. Chemist trying really hard to get some but no success for a fortnight now. He only has Cipla in stock and I am not going there again. Can anybody suggest another brand that they have found tolarable, He is waiting for me to come up with another name.

Thanks.xx

[rosie53]

Hi Riversidedawn, please don’t beat yourself up about not completing your previous treatments, when I had my primary back in 2007 I was “very low grade” didn’t need chemo but had rads and was put on tamoxifen, after 12 months I really couldn’t tolerate them anymore, I became very low and just didn’t feel like me anymore so my consultant agreed I could stop taking them.......roll on another 7 years and I have in my hips, ribs and spine!!
I totally blamed myself for this because I stopped the tamoxifen, I asked my oncologist about this and she point blank said no it isn’t because stopped them early so please don’t think that, like Carolyn has said I truly believe that it is down to pure bad luck!!
Good luck with your treatment plan.
Hugs Janette xx

[Lynnq]

Hello Juma

I had zometa infusions for nearly four years, my first one gave me flu like symptoms 

Like you I always found that the pain was in the areas where my mets were.

i always used to tell myself that it was the Zometa giving the cancer a good kicking

x

[Carolyn52]

Ladies. .
Don't feel guilty about not completing your treatment but focus on what is happening now ..

I had rads,chemo and 5 years tamoxifen. ..the little blighters still came back after 11 years ...I think it's just bad luck for some when the cancer cells hibernate with the treatment and then activate later in life ...

[Kate21]

As you say Benten, many complete all their treatment as prescribed and it still returns. Think stem cell involvement is more likely a reason cancer returns so you’re right not to beat yourself up about things. I had been going to my GP for years insisting something was wrong, I wasn’t ignored but mammogram and ultrasound were clear and they were unable to get anything when I had my first biopsy years ago. When I was diagnosed straight to stage 4 I initially ‘blamed’ myself for not insisting more was done earlier, but my primary still hasn’t been found, so sometimes things are not as straightforward as we think. Hope everyone is keeping snug! Kxx

[Benten]

Hi Riversidedawn.

Nobody in my family has come right out and said it but it has been heavily hinted that if I had completed my course of chemotheraphy this might not have happened,  My medical team stopped my chemo after four sessions because of my reaction to it,  I was borderline for chemo. I faithfully took my litle tamoxifen pill every day and it still came back after three years. I think they feel I shoud have fought to carry on with chemo. I refuse to beat myself up about it. I did what was best for me at the time. Lots of people complete chemo and take their little pill for years and it still returns,  Try it again. Like Kate says things change.xx

[Kate21]

Hi Riversidedawn, that’s interesting, I’ve never heard of removing the vertebra when it’s a secondary, so please let us know what your Oncologist says. If suggested I would seriously think about trying again, things can change a lot in three years. Please let us know how you get on, best wishes, Kxx

[riversidedawn]

Hi ladies thank you for your warm welcome. My surgeon suggested it might be a few blasts of rads or surgical removal of the vertebrae - neither is very appealing!

Dr Google mentions complications with both - what's your experiences?

I'm currently not on hormones as tamoxifen made me suicidal and anastrozole gave me drenching sweats 24/7, I looked like I'd been permanently caught in the rain and it was just no fun.

Hubby now blames me for the recurrence because I refused the hormones. If offered I may give it another go. Have no idea where I am menopausally, I'm 50 and was diagnosed 3 years ago. It seems like the drugs plonked me straight into menopause and flushes have calmed down so wonder if I'm out the other side?

I do agree I noticed different side effects with different brands when I did take tamoxifen.

We shall find out more tomorrow. In the meantime looks like we have a snowy Sunday to enjoy!

[Juma]

Hi I had my first bone infusion yesterday - zometa - wasn't feeling too great due to a cold but went ahead with infusion and second cycle of capecitabine as blood counts etc were all good. Quite poorly with flu-like symptoms and high temp during the night so ended up at hospital all day on iv anti biotics just in case - all ok now though.

My question is do you feel pain in the bones where the Mets are following infusion? I got out of bed like I was 100 yrs old this morning and I was warned my bones might feel a bit creaky but it seems to me to be where my Mets have been identified. Am I just imaging this??

Wrapping presents is on hold tonight - cuppa and a Christmas movie instead I think x

[Carolyn52]

Oh funny face ..I do hope it helps but at least it's winter so u can cover it up ..if if was summer it wouldn't look too good with your thong leopard skin bikini !! Ha ha ....
So 13 more sleeps before the cement mixer is switched on for the back repair op if all goes according to plan.
Take care my friend xxx

[funnyface]

Carolyn, We were at a party last night and I called it my new chasity belt, that I didn't know how to put on. Then the men decided it was my push up bra.

[funnyface]

Bon, They get you to try the back brace on at the appointment. It's your choice. I couldn't tell in 5 mins if it helped or not. Insurance covered it, so I took it. After one day I consider it a nuisance. I thought it would help keep it more stable in the car. Instead if we hit a bump my back hits the hard part of it and hurts more. I was in a store walking a bit and thought it helped some. I think I will try it at work. 

I did find out that there is contrast in the balloons they insert so they can see their placement better. It is the iodine contrast I'm allergic too. There is supposedly no problem as long as they don't burst the balloon. He says he will make sure he has epinephrine in the operating room in case.I'm going to call him and ask if he can pre-medicate me with prednisone in case. FF

[Kate21]

I don’t think I’ve read or heard about anyone who seems to be okay on the Cipla brand! I had previously had Accord and been fine so that was the obvious one to go back to. There are others that also have less side effects, some are also much more expensive and therefore there is a reluctance to prescribe those brands. Think the best way is to find a brand that suits you and then stick with it, and if that is one of the more expensive ones ask your GP or Oncologist if they will prescribe you that. I was advised by a pharmacist that ideally you should continue with the same brand every month anyway, once you find the best one for you, and get your pharmacy to make a note of the one you want on your prescription record, if it hasn’t already been requested by your GP or Oncologist. Kxx

[Benten]

Hi.

I also now get Accord all the time.  Cipla and I did not get on at all.  The problem I have is they never seem to have enough of it in stock to give me the full prescription.  Glad this came up because I had forgotten I had to go and pick up the rest of them.  Anybody else have this problem? 

Benten. xx

[Carolyn52]

Hello Kate
Just to mention to ladies that dont read the hormone therapy threads ....Cipla brand of letrozole seems to cause more side effects than any other. .I just hope ladies don't give up letrozole without switching to an alternative brand first ...I felt horrendous on it and now insist on Accord every month. There are other better brands too but I haven't tried them to offer any good advice .
Xxx

[Kate21]

Hi Riversidedawn, sorry to hear you have mets but wanted to say I have 3 vertebrae involved T12 plus 2 cervical. I was diagnosed straight to stage 4 just over two years ago and started on Letrozole and the monthly Denosumab injection. My Oncologist offered me radiotherapy if I wanted it for any pain but it wasn’t troubling me too much so I refused, and glad I did as once I started my treatment the discomfort improved. My repeat scan 3 months later showed treatment was working and, fingers crossed, my scans have remained stable since. I’ve been lucky as not had too many side effects, other than when I was given the Cipla brand of Letrozole for a couple of months, but my pharmacist now only gives me the Accord brand and everything settled down. Something to bear in mind if you go onto Letrozole as the brand does seem to make such a difference! Hope you feel better once you get your treatment plan on Monday, Kxx

[Benten]

Hi Riversidedawn. So sorry that you had to join us on this forum but it really is the best place to be after your diagnosis. I had my diagnosis in July after a 10 week wait of scans and biopsy.  I have a met in my pelvis. Those 10 weeks were horrendous. Not sure how I kept functioning.  It was almost a relief to hear the words, 'you have a 2cm bone met in your pelvis'.  I started reading the forum in May and found the ladies on here so reassuring and at times so funny it really helped me through a very dark, lonely time. Five months on I am on letrozle, denosumab injection monthly and about to strart palbociclib in the New Year. Life at the moment is carrying on as normal with just with a few more aches with the change from tamoxifen to letrozole and appointments. I was due to change anyway. I am perfectly aware that it could change any time but no longer feel that the end is nigh. Focus on Christmas as much as ppossible. I can go hours sometimes and forget about it. I had very a stormy meeting at work yesterday.  Believe you me cancer did not enter my mind at all last night, Was planning a murder as I gluggged a large glass of wine.xx

[bonariensis]

Hi Ff

Hope you WILL pass inspection for surgery. Will pray too. Does the back brace make you back feel any better or is it just a nuisance?

Hugs Bon xx

[Carolyn52]

Hello riverside dawn
I think we previously "met" back in the summer when u were having a boob tidy up op in hospital ( excuse my lingo but can't spell the medical things).
Well welcome to bone mets ..sorry u have more problems to face ..it's the disease that keeps giving. .
Hopefully now all your scans are done ( exhausting) you will be able to focus on a treatment plan ..maybe a blast of rads and a hormone treatment will be the first line treatment plan ? But I don't know really ..as.much help as a chocolate teapot ..
Sending hugs xx

[riversidedawn]

Hi ladies, This looks like a fun and supportive thread and I find myself in the unfortunate position of joining you!

I have had a month of scans, ct, nm bone and MRI as the NHS have cancelled 4 oncology appoints since September so onc wanted a full check up before I finally get to see him on Monday.

Yesterday I saw my onco breast surgeon for annual mammogram which was clear. But she finally put me out of my waiting and speculating misery and confirmed mets in one vertebrae T12. MRI showed no further spread so waiting for oncologist's plan for treatment.

It's a never ending waiting game but I'll keep myself busy this weekend wrapping presents!

[Carolyn52]

Funny Face
Sounds good and hopefully you will get the proper back surgery ..fingers crossed .
My neighbour had one of those back braces for several months and his back healed very well but they are quite uncomfy ....but it act as a girdle and u will look a lot slimmer !!
Hugs xx

[funnyface]

Well, I have a new fancy back brace and a surgery appt. of Dec. 21st. I have to spend one night bc of my lungs. I still need an EKG and a pulmonologist appt. If I don't pass inspection then I can't have the surgery and must wear the brace for 3 months and let my back heal on its own. Praying for the surgery.

[nicky08]

Good news about your OH and getting a new job, just the thing for this time of the year but what a b*gger about your thumb. I know how much it is affecting what you do and to have to keep going back for appointments and still getting no answers is a pain in the butt.  However it is also good to hear that your gums might be the issue and not your teeth and getting back on denosumab.  You have been given the runaround havent you? Grit your teeth and breaaaaaaaaathe 😉

Nicky xx

[Carolyn52]

Funny Face

Sending loads of hugs today for your appointment with the surgeon ..hope he can fit you in quickly and help your pain soon.

🌹🌹🌹🌹🌹🌹🌹

[dragoncarine]

Yes back on Denosumab finally - dentist thinks my pain is due to gum problems rather than teeth - so been given sensitive toothpaste to try, but unlikely to need any work done so OK to start the treatment again. 

[Kate21]

Hi dragoncarine, sorry to hear you’re getting the runaround re your thumb, it is annoying when you’re going for appointments and not getting any answers! Assume from what you’ve said you’re continuing with denosumab, did your Onc say anything about your teeth? At least you’ve had some good news! Kxx

[dragoncarine]

update on my thumb problems, MRI scan showed some sort of lesion on my thumb so orthopaedic surgeon referring me back to oncology - I'll be so annoyed if it turns out it is cancer related after all, and 4 oncology appointments have passed with them telling me to get orthopaedics to look at it grrrrr. It's now been 3 months that I've not been able to bend my thumb or use my hand properly. Feeling quite fed up again. Yesterday saw a different oncologist than my usual one, and there was some sort of mix up with my denosumab prescription (oncologist seemed to think that a prescription was not required and pharmacy would simply hand me the stuff...) and despite discussing needing different pain killers, no prescription for that either. Luckily my OH got a new job today so we have some good news to concentrate on at least.