Bone mets - please join in

[Mermaid007]

Hello Natalie, sorry you had to change meds but from what I read on here and the USA sites, Letrozole is the hormonal that people seem to have a lot of success with in terms of staying on it for a long time. 

Take care

Debs

[funnyface]

Hi Ladies, Janette, I'm hoping letrozole drops your markers. I started it back in July and then started Ibrance in Aug. I had a great report. I was having terrible right knee pain and went to orthopaedic. He Saudmy meniscus and acl had small tears...went for 2nd opinion he said knee needs replaced. I did steroid injection...no help. Then I did series of 3 gel injections .....abiut 2 days after last gel injection pain went away for about a week. Now it's back and the other knee has joined in. Along with left elbow! My question for you ladies is...when the pain starts from letrozole woukd it have been in both knees or can it start in one? Thanks FF

[JulieD]

Janette, I'm sorry your markers are moving up but hopefully the change of hormonal will reverse this and gt things stable for you.

Julia, thanks for signing and also sharing, we have to try to get our voices heard.Well done and good luck on the CRUK volunteering!

Hope everyone else is doing as well as possible, sending love and strength to all those waiting for scans, results, answers ....xx

[nicky08]

Hi Janette, a late posting from me but I saw that you had had your appointment and now on letrozole. I hope that it works really well for you and gets the markers to creep downwards rather than upwards. I have found that Teva is a good brand and one that a few ladies say is meant to be closest to Femara. The hospital usually gives out Accord but the other brands come from my local pharmacy. The others I have had are Cipla which was awful and Actavis that wasn't too bad. I really notice extra aches and pains after just a few days and have changed mid month rather than continue with the pack. Again, after a few days on the new pack the extra pains go away. Also, although some ladies talk of AIs being worse for SEs than Tamoxifen I certainly felt on  tamoxifen that I had so many aches I felt like an old woman and this was after my ordinary when I was 41!

Nicky x

[Cress]

Thanks JulieD,

I signed the petition and got a few friends on FB to sign. These cost based decisions on really vital drugs make me so cross, so... I've applied to be a CRUK volunteer ambassador. If they'll have me, I hope I'll still have the energy to campaign!

Thanks,

Julia 

[rosie53]

Thank you so much for that Marie, sometimes it's so hard to stay positive isn't it!! Luckily my daughter was off work today so had to keep dry eyes!! We went and did some crimbo shopping and do feel a lot better already now. Like you I am going to embrace my new "best friend" and plenty of positive thinking.

Hugs Janette xxxxxxx 

[Marie123]

Hi Janette, just want to say I know how you feel. This is where I was 3months ago. It did take a bit of getting use to and I did have wobbly days. However as I posted yesterday Letrozole has become my new friend. I know this will stop working at some point , but I am going to enjoy the friendship while it lasts. Take care, hugs and cyber positive vibes coming your way M arie xxx

[rosie53]

Hi Nicky, just got back from appt, she has changed me to letrozole, had a really good chat with her and she said the fact that my markers are creeping up  (although only by a little each time) and I have had a bit more pain than usual it be an indication that things may be getting worse 😣although I was half expecting this I still feel really upset, you want hear things are improving or at least stable don't you.

Anyway it is what it is, I'm going to ring my boss now to find out if i can get Femara, otherwise do you know of any preferable generic Letrozole brands??

Hugs Janette xxxxxxx 

[nicky08]

Hi Janette. I hope I got it right about Femara being out of licence! I know when I first had Arimidex in 2008 it was still in licence and after a couple of years I started getting the unbranded product which is why and when I noticed the difference. I think Femara is the same in terms of timings of licences being awarded.

i only have CT scans, with the odd MRI thrown in if the. CT can't pick up anomalies that are too small but have been noticed. I am always told from the report that reductions can be seen of my liver mets and that the bone mets can be seen to be sclerosing ie hardening. The CTs I have certainly can pick that up but I know our hospitals machine are fairly state of the art. - or so I've been told. 😉 I have heard over the time I've had bone mets that they never become NED as such as the damage is always visible on scans unlike soft tissue mets which can be reduced to NED. I suppose it's like a cut, you can't see the actual cut but you can see the mark or scar that has been left.

Good luck for later

Nicky x

[rosie53]

Thanks Nicky/JulieD, didn't realise Famera is now out of licence?? I work in pharmacy so will be looking into that!! Quick question, on my list of questions for my onc today is NED and healing mets, can they tell this by looking at bone scans? She told me that the bone scan only shows where you have mets and not if they are reducing or getting worse.

Hugs Janette xxxxxxx 

[nicky08]

Thank you for the welcome home 😊

Good Luck today Janette and Marirose, hope all goes well and any questions are answered. I agree with Julie about Femara/letrozole. I am on the unbranded product and have found that different brands give me extra side effects, on top of the usual ones associated with an AI! Femara itself is a lot more expensive and now out of licence hence the need to prescribe the unbranded product. I had a similar problem when on Arimidex previously and couldn't get on with the unbranded versions so did manage to get the licensed product prescribed but have been O K on the letrozole versions that I know are alright for me, I just keep a list of the ones from the pharmacy I get and either tick or cross them off!

Nicky x

[Marie123]

Thank you everyone for your good wishes. Good luck to Marirose and Janette, thinking of you. I can feel a party coming on in the cyber cafe  !!!! M xxxx

[JulieD]

Good to see you Nicky, hope you are settling in well.

marirose you are welcome, thanks for signing. Good luck with results

natalie1 good luck tomorrow. I get aches and stiff knees on and off with Femara but find it suits me better than other brands plus it has kept me stable for over 5 years. The problem is that it is more expensive than the generic letrozole so you'll probably need to convince your GP that the other brands don't suit ie upset tummy or something. Mine will now prescribe Femara rather than generic due to digestive problems. Good luck xx

[rosie53]

Hi Nicky, nice to see you back posting again.

Marie, glad to hear your good news!!

It's results day for me tomorrow 😞I've got a list of questions for me onc this time, it's only when you get home you remember you meant to ask about things!! I'm going to question the tumour marker debate, also there's a chance she is going to change me from tamoxifen to letrozole, am I right in thinking that the brand name Famera is easier to tolerate having less side effects??

Chocolates, hope your keeping well, not heard from you in a while.

Hugs Janette xxxxxxx 

Oh I've also signed the petition.

[Marirose]

Hi Nicky nice to see you back on line good Luck in your new home

Thankyou Julie for your link to the petition to save kadcycla I have signed the petiition on FB lets hope we can get the drug company to drop thier price.

Marie fantastic news I'm waiting for results so I know what you have been going through everything goes through your head and it's not easy to feel positive especially when things don't seem right. Lets celebrate at the Cyber Cafe.

Best wishes to all who are waiting for results and love to all xxx

[nicky08]

Hi ladies

After a looooong absence due to a house move and then no internet I am thankfully back in cyber land. I have tried to keep an eye on the forum when I've had internet access but that has been few and far between so I'm sorry if I've missed anyone's good or bad news and also not being able to help with any newbies who I may have relevant experiences to share.

I hope everyone is doing Ok, I see. Marie123 has had good results, that's great news 😊 and I hope anyone else waiting for results has equally good results.

Take care all

Nicky x

[Marie123]

Good Moring  Cyber Friends , good news, Letrozole is working. Onc said there was significant inprovement. Feeling v happy , but exhausted. Thank you all for your kindness and support over the last few months. M xxx

[edwina64]

Hi Lezhop sory you are feeling so down at the moment. I have been on denosemub for two years now. Recently I had a wisdom tooth problem and had to stop the inj for 5 months to have tooth extraction and long drawn out treatment. I was so glad to get the inj back as was experiencing lots of bone aches and 'fizzy' tumour feelings. My side effects are back aches just after the inj and some siatica down my leg. I am sure the benefits outway the negatives . The trouble is without clear information and correct interpretation from your scans your mind goes into overdrive! Best wishes to you hope you feel some improvemeng soon. I have a very good breast care nurse why not contact your and ask her advice, its worth a try xx

[JulieD]

https://www.change.org/p/women-with-incurable-breast-cancer-will-be-denied-life-extending-drug-kadcy...

Sorry first link didn't seem to work so try this one

[JulieD]

Hi Cress,

I'm not sure which petition it was but here are two. Ine is about keeping Kadcyla and the other about the Cancer Drug fund, both are important to SBC . If you're on Facebook there's a Second Hope FB page which you might find interesting and of course there is the Second Hope Charity too.

secondhope.org.uk/

https://www.change.org/p/women-with-incurable-breast-cancer-will-be-denied-life/-extending-drug-kadc...

https://petition.parliament.uk/petitions/107045

Hope that's helpful x

[belinda]

Have sent you a reply FF. 😊 X

[Cress]

Hello JulieD,

Can you please let me know about the petition you mentioned?

Many thanks,

Julia x

[funnyface]

Belinda, Sent you a message. Mail arrived.

[Marirose]

 Hi Lezhop

I am sorry you have had such a bad experience with your scans and the last few months. Your post has given me alot to think about. I have a tumour (met) in my sacrem and because I was having trouble walking the onc was worried it may be a compressed nerve in my back. I had a MRI and they took several slides of my spine and found I have a slipped disc. I too am on Denosumab which I have been since it was first introduced nearly 3 years ago. While I feel I have had little se from it my walking has slowly got worse but I do have MS as well. The last 2 month there have been times when I have found it hard to walk and I am getting pain in hips but most of all the front of my legs I have had 2 days where it has been really bad. I am going for a CT scan today and next week I will see my onc I will ask her about the denosumab.

Hello to all newbies sorry I have not been on for a while but there are lots of ladies who have lots of knowledge with what you are going through.

Love to all xx

[imac55]

Hi Lesser. Sorry to hear how much you have to contend with just now. I'm on denosumab, and was told there are no side affects! I was told I should live for many yrs and pain mild, then suddenly I have an increase and it's so hard to control. I worry about missing diagnosis, and your case proves it happens. I've been shocked at how blaze docs are when discussing our shortened life. Oncologists don't seem to win prizes for tact and charm! Take care, imac

[lezhop]

Hi, I'm finally back to join in. Admittedly I have had the odd nosey, but haven't posted for quite a while, I think mainly because I have been in denial.  Dawn, I'm not sure if you remember me, but you helped in me so much in previous years & you never cease to amaze me with your strength & knowledge, along with so many others on here of course.

A little update..since my mastectomy with reco in 2010(which I wish now I'd never had because of the discomfort), I have had many MRI/CT scans, particularly last year & I was told there were no signs of spread.

In March this year I started to get severe lower back pain, which over the course of 2 weeks became so excruciating, my husband insisted on calling an ambulance. It turned out I had severe hypercalcemia & bleeding in my stomach. I was given another MRI. It was then I was told I had bone mets that had been missed on previous scans & my lower vertebrae had crushed due to the weakness in my bones. All in all a bit of a shock! 

After spending 5 weeks in hospital, I was sent home with numerous painkillers & the constipation was unbearable!  Since then I have cut down on the meds, as I like to try & keep them to a minimum while I stil can. They discovered I had a DVT back in June & was put on a course of 3 months fragmin. Although, just a week ago I was told my most recent scan showed several blood clots on my lungs, so I'm back on it indefinately. I was also told last week that it was probaby the tamoxifen causing the blood clots, so I'm now off them.

I have a monthly injection of denosomab, which is my biggest worry as I have read that it can be  dangerous if theres been any damage to the spine.  Just recently, I've been getting the most awful dull aching pains in both legs. I mentioned this to the onc, but he said it was probably, the pain radiating from by back. Also, I have a few lumps in my armpit (the side of the reco) & chest area. I have been told that they will not be removing any of them as the risks outweigh the pros. I realise the cancer has spread, (apparently quite extensively in the bones) but feel so uncomfortable, just knowing & feeling these lumps everyday. I know how much you've been through, but also gained so much knowledge aong the way. I just wondered if you had ever been offered denosumab & if not why not? I'm seriousy thinking of stopping the denosumab treatment, but then I will be recieving no treatment at all. I still take daily MST, oramorph, when needed & paracetamol, but after talking to the onc & asking if there was anything else, he replied maybe capecitabine, sometime in the future that might calm things down for a while, but thought the side effects would be too much for me at the moment, because of my loss of weight & low bood count. I actually said, so basically, I have to sit back & let it do its horribe work? He said Yes. I'm not sure where I stand now, except that all I can think of is maybe they've given up on me. I'm usually a very positive person, but all this is making me feel so negative 😞 

I'd love to hear your views & in the meantime, I sincerely hope you find a combo that will work to minimise the pain of this horrible disease. I'm sure you will:)  Love & hugs, Lesley

[JulieD]

Thanks Pleasant1,

You've written well. I know and appreciate that BCC have done more, particularly this year but in the general public and everyday media SBC is still ignored or unknown and that's why Second Hope is so important. If it can raise awareness and fund reasearch specific to SBC we might begin to see some changes.

xx 

[Pleasant1]

Bumping Up – JulieD's link to secondhope.org.uk

Please continue to raise awareness for Second Hope, the charity set up by volunteers specifically for us.

I was diagnosed with secondaries in June and I'm finding it really tough. I feel I'm far too young to have to face not seeing my children grow up. I know there's lots of us out there diagnosed younger and it's so terrible when you're otherwise fit, energetic and healthy, leading a busy life, to be blown away by this.

Too little focus and funding is aimed at us because we're currently incurable. Those with primary still live in terrible fear of recurrence (I was there 2011-2015 and I'm not knocking anyone with a primary diagnosis). However, there are many more primary sufferers with more energy than those of us now having to suffer even more with secondary breast cancer. Awareness for the pink cause is strong, there's hope of recovery and more support. We currently have no hope of long term survival and not long ago were merely sent away to make memory boxes.

PLEASE TAKE ACTION:

We really need to get cracking on Twitter and raise awareness of Second Hope, the charity specifically set up by volunteers for US.

ONE THOUSAND OF US DIE EVERY MONTH:

Everyone please get on it and put as much spare energy as you can muster into raising Second Hope's profile and our cause. We will make a difference and improve our chances of survival for ourselves and others. Together we are stronger!

Big love to all.

X

[rosie53]

Hi Mand67, I've not been on much lately but have just been catching up with the thread. Sorry to hear you have had a bit of a nightmare few weeks. Looks like you are finally getting somewhere now though, I was dx with bone mets March last year, my primary was in 2007 and like you I was discharged after the 5 years with a smile and a wave with idea or education of what else could possibly happen, I understand they that they don't want to scare monger but more info and education should be available to us when we get our primary, I had never even heard of mets before last year!!!! 

Hope you managed to get some sleep last night, you take care and keep us posted.

Hi Dawn, I am always interested to read your posts as you give us such inspiration and knowledge, I read that over the years your pain can come and go without explanation?? I have mets in my hips and last year I had radio on my left hip which was my worst area for pain and it has been pain free since but since mid August I have been getting niggles in that area again and for the last week it has gone back to how it was originally, I contacted my bcn who got in touch with my onc but she won't do anything until she sees me next week, I usually have a 6 monthly bone scan but she said I didn't need one this time but because of the pain I have questioned this but she is still refusing to do anything until she has seen me, in the meantime I am not sleeping as the pain is worse at night and I cannot get comfortable so i just have to sit and worry things are progressing!!!!

Sorry for the ramble 😕

Hugs Janette xxxxxxx 

[mand67]

Thanks Mo and Julie,
I'm looking forward to a good sleep tonight (hopefully). Not just the meds but knowing I am getting somewhere has lifted me somehow. Knowing I can come here and get support is also really helping - so thank you xx
Mo, I wasn't even aware that we could get skin mets! Another thing my Onc didn't mention when he bid me farewell at the 5 year mark!
I hope you get answers soon as the waiting is the worst bit. Thank you for helping me when you are going through worries of your own.
I will take my mum with me for the bone scan. Sounds like a long day!
Love Mandy xxx

[redridinghood]

mand67........thanks for the update. It sounds as though things are moving......at last. I am glad you have the painkiller cocktail! Use it! The GP was right to refer you to the oncologist now so there will be no delay if needed post bone scan. It can be cancelled if not needed. i hope you have the scan this week, but time will tell. The bone scan i had involved an injection, then a break for a few hours.......you can go shopping, or home, or just wander  round the hospital with a friend.........take a friend if you can........then the scan. It is painless, lying flat, and took about 20 mins. I fell asleep! If the scan leads to the oncologist there will be a plan put together for YOU. They know what they are doing, and have seen many, many others. But do ask questions, and never be afraid to chase things up. It may not come to that, but if it does there is a way forward. Don't be afraid.

I understand about waiting. I am seeing my onc next week on the advice of my Breast Care nurse about possible skin mets. I had a tiny one on my chest which led to my re-dx and think I may have another. He'll know, but I am in that limbo. i hate it, but am getting used to it in a funny way.

And do remember that nobody here minds anything..........amazing! You can say what you like! Be patient for now, and keep us informed. People even just share how they are feeling, and why not? 'They' will get to the bottom of this, whatever it is. Hope you sleep better tonight with your new bag of tricks!

mo

[JulieD]

Mand,

Thanks for your update, I'm pleased to hear yor GP has been supportive and also proactive in chasing the scan up. Whatever the results you will be better able to deal with things when you know what is or isn't going on, it's the not knowing that makes it impossible to deal with things, so I'm glad you will get your scan soon.

I hope your cocktail will get your pain under control. Please continue to pop along when you want to it is much better to 'talk' than keep things bottled up. We might take a while to see your post but we're always hee for you. x

[mand67]

Just a quick update Dawn Mo and Julie,
GP rang consultant radiologist today who was apparently very helpful and will make sure I have the scan this week or early next week at the latest. There was confusion about which bone scan I needed it seems - hence delay.
I have a good cocktail of pain killers and my GP said she had discussed me with her colleagues and was referring me to oncologist so as to prevent any further delays post scan. She did however say ' I have to be perfectly honest, I am worried'. Well at least I feel a bit more supported now.
Thank you all again. It's a great help being able to talk to you as people just don't really understand.
Mandy

[dawnhc]

I hope your GP has been sympathetic Mandy - as I was reading your post I thought then you must chase it up so I am glad you have done something about it. Hoping to see your post soon saying you had success! Over the years with my bone mets I have had pains such as you describe and I don't know what any of them were down to - they would last several weeks and then just stop! But we have to take them all seriously because we just don't know what is going on inside our bodies when we are coping with this disease. It would be so great if you could come back and tell us nothing was found. But I think you have faced the worst - it's the way I have always dealt with things - that way the news can only get better! We're all here if you need to talk.

Dawn

xxx

[mand67]

Hi Mo,
I'm so grateful to you for replying. I am still waiting for my bone scan as GP referred me to breast clinic first which has delayed things. I have had to take time off sick right now asbo can't get through the day without my back and ribs being ' in bits' as I deccribe it. Just took dogs out and was so glad to get home as rib started throbbing - and still is! Tried to stop the codeine at night but wake up with the 'toothache' in my ribs. And a new thing seems to be that I can't lie on that side. Feels like laying on stones! It is all wearing me down and I'm not really in a good place mentally. Seeing GP today at 3 to chase scan and get better pain relief. I'm so scared I am not going to be able to work. I have been studying hard to become a DN specialist practitioner and only have 2 1/2 months to go! My job is physical though and I really can't do anything physical right now. It just aggravates things.
Thank you for your words of encouragement. Once I know what I'm dealing with I think I will be able to deal with it. It's the uncertainty that is grinding me down. I was 11 years from diagnosis this March. Life is tough, you are right. But we all know that on here don't we. And it really does make you a different person. I'd like to think stronger but that doesnt mean we have to be strong all the time. I'm being tested that's for sure.
Hugs,
Mandy

[redridinghood]

Hi mand67. Just to say i hope all is going well for you post bone scan. Either you won't be joining this - happy and sharing! - group, or you are on your way with treatment. Whichever, I wish you well, and hope you have time to keep us updated. I don't post here myself, although I am an avid reader, but thought I would post today because you don't seem to have had any replies. i was dx with primary in 2001, and rediagnosed metastatic last Nov. i have what the surgeon called 'patches' in my bones........hip, rib, lower spine and sacrum. I had a spot in my lung which 'resolved' after 3 months on letrozole. I take daily letrozole, monthly denosumab as injection, and daily Adcal. I was going to have chemo.......tax+herceptin+perjeta........but oncologist said last time to wait, as I otherwise feel fine. Bones can be treated, and there are therapies.......like radiotherapy.....to deal with pain. So.........I hope things are going well for you. I have been an avid reader of the forums, but haven't posted before as I felt I had nothing to offer. All I can offer you is very good wishes. It is a shock, but of course life can be a shock. I have bad days, but good days too. Please take care.....and best wishes to everyone else on this rich and sharing forum. i would never have coped myself without it.

mo

[mand67]

Thank you Dawn. I think I was probably asking a question that, in retrospect, was not the best 'introductory' post 😊.
I am writing this at 5am as my discomfort has woken me up now the codeine has worn off and I can't get back to sleep. I am not being negative, more realistic I think, in feeling that this isn't right. I have a strong feeling I may be here to stay but hearing that you have been living with Mets for 13 years is so encouraging. I really can't imagine how you dealt with the initial diagnosis - especially knowing they were in your skull! You give such a positive message to those of us possibly beginning our second 'journey'. Thank you for giving me strength to face what I feel is ahead.

[dawnhc]

Hi mand67, I'm sorry you haven't had many replies yet. I think yours is a difficult question to answer as possibly most will not know their ALP results. Probably the first they know is, like you they have pain and their onc investigates with scans etc. I have been looking back at my blood results around the time I was dx with bone mets and my ALP is all over the place. Most of the time it was within normal range despite the fact that the bone mets were so extensive but a couple of blood tests were way over the normal range. I think in the early stages pain comes and goes and is generally worse at night. Mine was sneaky and didn't give me much warning at all pain-wise. The first noticeable symptom was when I got really severe sciatica and it was only after dx and looking back that I recall finding it very difficult at night to get comfortable - my head felt sore and I couldnt lie comfortably on my pillow. I experimented with all sorts of pillows - and that can get expensive!! Later after seeing my bone scan the answer was clear to see - I had a lot of bone mets in my skull! I think most people with bone mets find their first warnings are pain in the spine and hips and we all know lots of  other things can cause those pains. I think anyone with a history of breast cancer needs to have this sort of pain investigated - far too many leave it too late because GPs don't always take this seriously enough in my opinion. Sorry, I need to get off my soap box. Have you got a date yet for your bone scan? If not I would be inclined to chase it up. In the nicest possible way I hope we don't see you posting here regularly 🙂 but do let us know how you get on.

Dawn

xx

edit: forgot to mention in case you do end up staying with us - like some of the others here living with bone mets - we've been doing it for a long time! 🙂 My bone mets were found 13 years ago.

[mand67]

Julie thank you so much for your reply. Being five years stable on your first line of treatment is really positive for me to hear. I think I have actually began to prepare myself for the worst news without realising. It's sort of a defense mechanism I guess. I really didn't want my bloods to come back with raised calcium but they did. Yes I know it could be other things but my back and rib pain is constant and getting worse. As I type this I am so uncomfortable. I see the breast specialist tomorrow as it is the procedure I guess that they need to rule out my non BC breast causing trouble before looking further into my rib/ back pain. I just wish I had been referred for a scan first but I understand there is a format to follow by GPs.
Thank you for making me feel less alone. I have very few ppl to talk to as I am on my own (hubby left me during my chemo 11 yrs ago) and I dont want to worry my children.
I will keep you posted and if I do join the club at least I know I can reach out you all of the wonderful ladies here.
P.s. it wasn't a sob story about my husband! It made me stronger! 😃

[JulieD]

Hi Mand67,

I'm sorry you are having a worrying time and hope that you will get some answers soon.

Although this is the bone thread lot of people drop by it's a knd of general meeting place so don't worry too much about posting in the wrong place. You might like to post elsewhere too to see if you get more response, maybe one of the threds under symptoms?

I don't know the answer to your question though I suspect it may be possible because although blood tests can give you a picture it's combination of tests that give a more acurate results. A bone scan would pick up any hot spots so is a better diagnostic tool.

I know it's hard not to worry but worrying won't alter the outcome so try to stay positive whilst accepting that results might not be as you wish. It's difficult but I try to hope for the best and prepare for the worst!

I hope the bone scan is soon and you will know where you stand. Please let us know how you get on. Also. just to try to take some of the terror away I have been living with bone mets for over 5 years now and my first line of treatment is still keeping me stable. I hope you do not join our club, but if you do please remember that though we can't be cured we can be treated an often for many years. xx

[nicky08]

Hi pleasant1i also changed receptor status to HER 2+ from HER2- and had the same treatment as you are going to have. I've been absent for a while due to no wifi but I'll find the thread about Pertuzamab that you may find helpful.

Goid luck with the treatment and hi to all other mets ladies.

Nicky x

[mand67]

P.s. I really think I'm posting to the wrong thread but can't find one about 'worrying you may have SBC'.

[mand67]

I'm sorry if I'm posting in the wrong place! Just wondering whether it was likely/ possible to have bone Mets with a normal alkaline phosphatase result .I am waiting for a bone scan for spine and rib pain which is getting progressively worse over past month but was just a niggle for the preceding 9 months .Need codeine every night now! Only blood test slightly out of range was serum calcium of 2.64 .Is this a n indication that I am probably worrying about nothing?
My history is IDC 2004 ER+ HER- 4/14 nodes .
Thank you in advance for any advice. I feel so alone worrying

[JulieD]

BLH, so pleased you found the Seond Hope site interesting. As I said it's only just launched so will grow over the coming months/years. Thanks for signing petition too, it's important we try to get our voices heard.

Dull and raining here today after a nice bright weekend. Hope the rain clears later. Good luck to anyone with results, scans appointments etc this week. xx

[BJH]

Thank you Julie for recommending the site secondhope.org.uk.  Well worth a look.  There's also a petition re. a new drug to sign and share (which I've done).

[Glo]

Hi Pleasant1,
Sorry you've had progression, it's a bummer isn't it!! Good that you've had the change of HER2 status identified though as I believe the treatment for that works well! Regarding hair why don't you go for the cold cap? I've recently had 12 sessions of weekly paclitaxol and used the cold cap. I did get a bald patch on top but can hide it, my hair has thinned more since chemo finished 6 weeks ago but I still have plenty, and eyebrows and eyelashes didn't go until about 3 weeks after the end of chemo. They are now growing back slowly and bald patch is starting to fill in! Def recommend cold cap, just looking " normal" makes you feel better!
Good luck with your treatment
Glo xxx

[Pleasant1]

Morning all

Hope you're all somehow managing your secondary world today.

Many apologies for not thanking so many of you for your support at the end of August. natalie1, marirose, Lynnq, edwina64, stresshead – and any others I may have missed. I dipped out for a while as schools went back and life became too hectic. I've finally caught up on reading seven/eight pages between then and now.

Marie123 I totally agree. What can we do about it? Nothing much as we feel very alone and there's not even any secondary groups meeting around here. There are monthly meetings in Bristol but it's such a trek to get to and fitting in with a busy family life and hospital appointments makes it near impossible. Is there anything we could organise ourselves regarding any kind of get together? No doubt we're scattered all over the UK! I'm half-an-hour or so from Bath if anyone wants to PM me.

Regarding my latest **bleep**, my ct showed signs of cancer spread so the last couple of months of treatment with Letrozole and the injections combo is obviously not working. Yet another shock I'd not prepared for as other than my breathlessness I'd imagined it was working. I'm due back at hospital next week to have a chemo planning meeting and a PICC line fitted in preparation for doses on two consecutive days the week after. Bye, bye hair again. It's taken four years for my eyebrows to sprout so I may never get to see them again at this rate. The dread of going through it all again is totally hideous. My nose is even bleeding now and I never get nose bleeds!

Anyway it's changed from ER+HER2- to ER+HER2+ Going on Herceptin (trastuzumab), Pertucumab on day one and Docetaxel (Taxotere) on day two. Got to have six of the latter, not sure how many of the first two. I requested a PICC but perhaps I should have asked for a Portacath? Although that would then take longer as I should request a general to have it fitted by the sounds of it!

So FED UP with it all but must somehow muster my inner forces to get through the coming winter of total discontent. It's truly a worse fear to have to face it all again when you know what you're in for and how badly you do not ever want to go back there. :((((( xxxxx

[Marirose]

Hi I am in agreement with you all there is little publication on SBC/MBC I knew nothing about it until it was thrust upon me. It's about time more information was published about it  and more money is needed for research and drugs with this awful desease xxx 

[Marirose]

Hi I am in agreement with you all there is little publication on SBC/MBC I knew nothing about it until it was thrust upon me. It's about time more information was published about it  and more money is needed for research and drugs. 

[rosie53]

Belinda, Marie and Julie, I agree with everything you have all said. People in the know like to bury their heads in the sand and sweep us mbc/sbc ladies...and men under the carpet and concentrate on primary fluffy pink!!!! It makes me so mad 😠it's because of this that I for one had know idea what mbc was and that there was a good chance that I could go on to develop this horrible disease.

Rant over......hugs Janette xxxx