Bone mets - please join in

[belinda]

Morning Helen and everyone. Hope it gets back to summer soon, contemplating putting the radiators on.
Hope everyone has a good day today. Not boasting but offering an example of how things can get better when you feel at a low ebb, I thought I would be spending this Summer in a wheelchair after being diagnosed further with heart failure this Spring but the wheelchair is back under the stairs and yesterday I had a lot of fun in the clouds on the 'big girl' swings at our local park. It was a chilly day and not many of us about...no children waiting their turn on my swing. 🙂 Take Care. X

[Chocolates]

Morning Helen, lovely to see you back with us properly - looks like huge weight been lifted off your shoulders. How's your sister doing - we are thinking of her also. Beautiful sunshine here - a wash is on so it'll rain here later and your day will brighten up! Forget that parasol - caused chaos here. Hope your bloods go ok and your rads. Nearly there Helen, keep that holiday at the front of your mind. You can do it.

Morning everyone - hope you have a good day. I'm off for my treatment, herceptin/perjeta and denansomab. Have got ready meals for tonight so can just sleep off the tiredness if needs be.

Have a great day everyone

Huge hugs,
Hxxx

[2catlady]

Goooooood morning ,lovely ladies,

Chocolate,hope your tummy has settled and you feel a bit more at ease.xxxxx

Tracy,I hope you are having another duvet day to kick that cold into touch ,you have packing to do xxxxx
Tink,thank you,lovely to see posting,hope your feeling a bit better with the treatment.xxxxx

Mavis,we haven't heard from you ,please let us all know how you are xxxx

Sheila,how are you? Hope you are well or at least not feeling as bad xxxxx

Belinda,Pam,Julie & Julie thank you xxxxxx
If I've missed anybody out so sorry,but you know I'm always thinking of you.
Well off to do bloods ready for chemo on Friday. Only 10 more rads to go yippee,I'm soooo itchy,it's either the rads or my cats have fleas lol.
I'll catch up with you soon.
chocolate have you got washing out as it's raining in the NE,I may have to use my new parasol lol
Huge hugs to every one old friend and new,Helen xxxxxxxxxxxxxxx

[Chocolates]

Tracy - so sorry to see you've had some progression. You're not feeling well in yourself with this cold and you've had that to deal with as well. I think you should still go for your holiday - and I would be encouraged by your onc saying that he is happy for you to go. If he felt you needed to start earlier then he would say. I think the hol will give you a goal to aim for and finally kick this cold. Otherwise you've just got chemo to look forward to. How long have you had this cold now Tracy? Do you think it's time to see your dr just in case you have an infection somewhere? Just a thought - I presume they checked you out at a&e but please if you get a slight rise in temp get it checked. Otherwise, Helen's advice is spot on - under the duvet on the settee with oh waiting on you. xxxx

Julie - thanks for the info. I think my mugga scan will be brought forward now just to double check. Xxx

Tink - how are you? How are things going?

Sheila - are you feeling any better? I really hope so.

Mavis - how are you doing - have they changed your treatment regime yet?

Huge hugs everyone,
Hxx

[juliemo3]

Evening everyone, thank you for your lovely welcome.

I am delighted at Helen's news, she is in safe hands at The Freeman.

Chocolates re your heart, I have been taking 4mg Perindopril daily for the last 18 months or so, as Herceptin had started to affect my heart, according to Mugga scans. My Onc just prescribed the pills with never any suggestion of taking a Herceptin break, so it could be any option for you too, if needed.

Love to all 

Julie xxxxx

[Tinkerbelle]

Evening everyone,

Helen!  What wonderful news; you deserve a decent team - full steam ahead.

Desi - waiting until you feel better after your holiday sounds like a good idea - the chemo will still

kick the little uggers into touch.  I delayed my second FEC for a week to go on holiday and it still did its job.

Chocolates - glad your ECG was clear and your BCN gave the doctor a talking to.

Everyone - hope results are good for those waiting and treatments kind to those going through them.

Tink x

[Bevlaar]

Wow Helen you did it! !!! Good for you...a huge weight off your shoulders now youre out of that dreadful place and away from the witch! Cape is great...on my 3rd cycle now and no ill effects! Think its denusomab they mean for you...ive spoken to a lot of ladies doing really well on it.
I had my pip based on I can only walk 20 metres before being breathless and I had enhanced mobility as well which gave me the full 12 points. You should be ok too for that.
Good luck will keep everything crossed 👌
Love bev xxxxx

[bill-ben]

Thanks for your reply Nicky good to have as much info as I can. So glad to hear you have changed hospitals Helen lets hope your new team will get you sorted. To all of you off for treatment tomorrow best of luck I've got my second lot of FEC hoping I shall have the very nice young man who did it last time!! Well every cloud has to have a silver lining!!!

[2catlady]

Oh Tracy (((()))) huge hugs,so sorry to hear about progression. Keep that holiday as your goal you will get on it. This is just a speed bump in the road and we are here to carry you over it. Get snuggled in a duvet and stamp on your cold. Heat packs are great for muscle injury or ibuprofen gel or both. The fluid will probably absorb so try not to worry. Your body is fighting an awful lot at the moment .
Stay strong Tracy and don't be hard on yourself, sit with duvet wrapped around you in OH seat lol.
Massive hugs coming your way lovely lady,Helen xxxxxx

[belinda]

That is great news Helen, REALLY great news. 🙂 x

[Desi-2]

I'm so pleased for you Helen. Hope that nurse gets her comeuppance!
Chocolates I said I could walk the 20metres but I still reached the higher level pip.

More bad news for me today 😕 BCN just rang and my scan shows more progression the spine and ribs where I had previous rads to. My onc said treatment remains the same Fec but whilst in his opinion it is okay to still have my holiday he will bring it forward if I want him to. I'm veering towards still having my holiday as I'm not feeling particularly well at the moment, stinking cold. And on top of that spent the morning in a&e thought I had punctured my lung with all my coughing, but the doctor thinks I've probably torn a muscle but to go back in a couple of days if it's no better. A little fluid on the lung nut normal 4weeks post op.

Xxx

[pam01]

My error!! denOsUmab !!!x

[2catlady]

Hi,chocolate,so glad your sorted. Omg! I did have a laugh at your proper BCN. telling doctor off,what a totally shocking thing to say,obviously that's where we are all going wrong and not putting our mind to it. I do wonder if she trained at Fawlty towers!!!
Glad you got your form sorted too.
Take care,chocolate ,huge hugs,Helen xxxxxxxxx

[2catlady]

Oh ladies,thank you I'm sooooo happy. YIPPEEEEEEEEE
Yes,pam that's the bone thing,denusomab. My hubby said I'm like a new woman.
The lovely Karen is a real SBC nurse so really understood everything.
And if things couldn't get any better the new Dr Who starts on Saturday,lol
HUGE HUGS XXXXXXXXXXXXXXX

[Chocolates]

Woohoo Helen, YES, YES, YES. Fantastic news and you get your two chemos in as well. So so pleased for you. Now we can't use fawlty towers anymore or lord fawlty!!!!!! Rest up now and relax - that's the most important thing. Well done Julie too for the info. What a difference in less than 24 hrs. xxxxx

I went to the drs this morning about my racing heart amongst other things. Had to go to hospital for ECG - that's all clear so hopefully just a little bump. It was the dr on call who looked at it - she said have you been under any stress? Emmmm - living with secondary breast cancer is stressful. She said oh it's not too bad if you put your mind to it. My bcn was there as well - she took the dr outside straight away and when the dr came back in she immediately apologised. It was great. Anyway although I'm still a bit worried I'm more settled now back home again. I've got my treatment tomorrow morning anyway so will have the usual checks beforehand. My onc is away on a cruise but bcn has emailed him. Said they'll let me know if he wants any further tests done.

I also got my ds1500 filled in properly this time. Rang up pip line - answered questions - just slightly worried - can I walk 50 metres - said no very breathless, can I walk 20 metres, said sometimes but always breathless. Now thinking I might not get higher mobility because I said sometimes I can. I felt I had to be honest though. She was a bit of a dragon who I spoke to. Anyway I'll just have to wait and see. Fingers crossed.

Hope everyone else is ok - I've been cold today - socks back on with shoes.

Take care ladies,

Huge hugs
Hxxx

[JulieD]

Yay!!! I.m hopping around with joy for you Helen!!!Solo pleased you went to Maggie's and the lovely Karen got it all sorted for you. It must be such a huge relief. Now you can get on with your treatment, concentrate on your future and have a great holiday. Yippee!! xxxx

[pam01]

Yes!!!Result!! Im so pleased for you....brilliant result and many cheers for Maggies ! Think that drug is denusomab....about a third more effective than zometa all things being equal!!!! Start your packing!xx

[2catlady]

Ladies YESSSSSSSSSSSSSSS!
I'm at the freeman,I never have to go to Fawlty towers ever again!!
Our new friend Juliemo3,PMd me last night to tell me about her awful treatment and how she changed to freeman. She was telling me about the Maggies centre so after a sleepless night went for rads, walked into Maggies centre bust out crying told the lovely lady Karen there all about my treatment and what evil BCN said ( she knows who she is and I'll not write what she said about her on here but she has her cards marked!!!) within half an hour she had spoken to onc( who is not on holiday as FT had told me) I'm picking up chemo pills cape.. this Friday so I get two cycles in before my holiday and a two week break. She said she's going to get zometa changed to something that starts with a D.... As that's better than zometa.
I feel as if I've had a huge weight lifted of my shoulders .
I'm sooooo happy.
Massive hugs to you all,Helen xxxxxxxxxxxxx

[bc-lass]

You are always so upbeat Nicky x

[nicky08]

Hi ladies

bill-ben in answer to your question I ended up with atrial fibriallation which was caused by the FEC I had 6 years ago.  I've not had iv chemo since but have been on Capecitabine over the last 18 months.  It is highly unlikely to get this (or so I imagine after knowing so many ladies who have had this type of chemo) so I was just one of the unlucky ones!  It is worth getting the post chemo echo scan done though as this was something that my hospital didn't do and therefore maybe I could have been treated sooner.  I didn't have any poblems whilst on FEC (6 cycles) and generally felt OK on it other than the first 4-5 days when I felt a bit yucky - but no more than that.  I'm due to start another chemo soon which I will also have with Herceptin and Perjeta so I'm back into the unknown, gulp!

juliemo - good to hear from you and your secondary BC 'journey' with all the new HER2 drugs.  Great that you are now showing no evidence of disease in your liver and hope Kadcycla keeps working it's wonders for you with minimal SEs.  I think thre was a lady who recently posted on the forum saying she had been on it for 4 years now!  Assume she had been part of the original trials, and she was still doing really well.  Now I have gone from HER2- to HER2+ I'm still learning about these new drugs as they weren't relevant to my treatment until last year when I had a liver biopsy done and the receptor status had changed.

Hi to everyone else on this thread and hope you are doing OK with new treatments or the current ones are still working well for you.

Nicky x

[SDP]

I started treatment in October last year and had 7 rounds of docetaxal finishing around March time this year I think - so just been on herceptin/perjeta along with letrozole and zoladex since then (and the bone injection I can never spell)!  My lungs were clear by my first scan and by then end there was just something small residing in my liver.  Had a scary last scan which suggested I had progression but they rescanned to make sure and turned out to just be an infection .. and if anything they reckon liver has reduced a bit. I know its still a trial but would be great to hear of a story of someone being on it for a very long time wouldn't it! xxx

[Chocolates]

SDP - thank you for your reply. I saw the gp and he said it was still beating quite fast so just left message for bcn to ring me back. Hopefully it's just a blip - treatment day tomorrow so fingers crossed all ok. How long have you been on perjeta/herceptin? Is it working for you?

Tracey - glad to see you're a little more settled this morning. You're right - the nights are the worst. Sending you more huge hugs xxxx

[Desi-2]

Thanks for your reassurance ladies feeling bit more positive again this morning. It all seems so much worse at night doesn't it. Rang the BCN this morning and she said that whilst it's always a worry when it's not contained the chemo treats the whole body so if it's going to work it will work on that too.

Love too everyone xxx

[SDP]

Hi Chocolates,

I don't post very often but I do read - just wanted to say that I am on herceptin/perjeta and sometimes I get a fluttery heart aswell. I've mentioned it to my onc but he isn't concerned. I get a MUGA every few months and everything looks okay so I don't think there is any damage happening xx

[Bevlaar]

Tracy...hope youre bit better today. Its so scary all the time isn't it? I hate this disease and what it does to us. Can you check with one of your medical team what it means? They will probably have many options though to try..so dont worry too much. Love bev xxx

[Bevlaar]

Hi juliemo.....pleased to hear your treatment is working out...they always seem to be able to pull things out of the bag for us and with all the new drugs on the horizon kets hope there'll be many more available to us. Good luck with it and we're all here to offer you support and answer any questions if we can!

Helen....good luck with rads this morning. Hope no more glitches for you! But cant wait to hear about it when you get back....lol!

Have a lovely day ladies....would have been my dad's 85th birthday today so going for walk to cemetery then taking mum for lunch.

love and hugz all..,,, bev xxx

[Bevlaar]

Hi vercors, sounds like youre having a great time in canada! Thanks for the info on meds for dubai, I'm only on Cape and the dexamethasone is only for 2 weeks for the breathlessness until they assess me again. Not on antidepressants but will check out the website. Love bev xx

[2catlady]

Good morning lovely ladies,
Lovely to see you have posted Julie,I've just PM you. I told you we are a friendly bunch and totally loopy at times xxxxxx

Oh wow vercors,Canada,you lucky girl.have tonnes of fun and please tell us plenty of stories to make us jealous when you get back. We wouldn't say no if you bring a handsome Mountie back for us lolxxxxxx

Oh chocolate,hope your tummy settles,mines the same but I think mines stress lol ( don't know what stress that is lol) your GP will put your mind at rest regarding your heart ,try not to worry xxxx

Tracy,stay strong xxxxxx we are all here for you xxxxx

Hello to everyone else xxxxxxxx
I'm off for an early rads as they changed my appointment.GP hasn't rang so I reckon he got no joy from evil BCN,BOO HISS!
Huge hugs to everyone,stay strong,Helen xxxxxxxxxxxx

[Chocolates]

Welcome Julie, we are a lovely supportive bunch of ladies. I'm so pleased that you are now stable after such a shock and poor onc originally. Use this forum to rant, say whatever you like and definitely to tell us your good news. We especially love that bit. I hope you find the forum useful like we all day.

Tracey - hang in there - we're all there for you. I bet you just want to start the treatment now don't you - the waiting can be harder. Hope you're feeling stronger though after surgery. Huge hugs.

Vercors - sounds wonderful. So pleased you are having such a fantastic time. Hope you enjoy your last week and stay well. xxx

Morning everyone else - bit of a tossy, turny night. My heart seems to be beating a bit quicker than usual. Anyone else had that? I'm seeing my gp this morning so will mention. I'm worried it might be the herceptin and will stop it if it's damaging my heart. However, I do accept that me worrying about it is not helping. Hopefully gp will put my mind at rest.

Have a good day everyone. Helen, hope you're ok and rads not too exhausting.

Huge hugs xxxx

[belinda]

Great to hear you are having such a good time vercors. 🙂 x

[Desi-2]

Hi Juliemo well after an awful start it does sound like the new treatment has worked wonders! Long may it last! Welcome to the forum, I'm starting Fec soon a first time on chemo for me. I have bone and lung mets and apparently there's evidence of it being in my lymphatic system. Freaking out a bit tonight about this not sure of the implications. Look forward to getting to know you tho.
Love Tracy xxx

[vercors]

Hello ladies,
I have been on hols with my family in Canada for almost two weeks and we have another one to go. I am loving it. The kids (22,19 & 16) are having a great time. I have been reading posts on here, but had no time to participate.
Welcome to the new ladies, you are in a good place. We are here to help ( except when one is having a good time on holiday).
Bev, just a note about Dubai, if you are on anti depressant, you will need to check the UK government travel website. https://www.gov.uk/foreign-travel-advice When I went for business a few years ago, I checked and anti depressants are part of a very loooong list of medicines you are not supposed to take into the country others like tamoxifen, letrozole were all ok.

[JulieD]

Hi julimo,
Welcome to the thread, you'll find lots of support here. Sorry to hear about your poor treatment at your first hospital but glad you are getting good care now and great news about Kadcyla! x

[juliemo3]

Hello to everyone, I am new to the site but have read your posts and found so many of them helpful.

I was DX in 2009 and had WLE, 6xEC, rads and Herceptin at the time. Within months of finishing treatment I suffered a collapsed vertebra and got my SDX in 2011 of mets in pelvis and spine.

In 2012, 6 months later, I switched hospital, after getting a second opinion and discovered mets were now all through my pelvis, spine, ribs, both legs and 3 tumors in my liver. Quite a shock to see how fast it had ripped through my body and discovering I was on the wrong treatment.

I had 6x Docetaxel and went back on Herceptin under the new Onc and this sorted my liver and helped my bones.

After 18 months a new tumor appeared in my liver and I was switched to Kadcyla in March this year.

Scan last week showed the liver tumor has disapeared and I feel fine on Kadcyla with no SE and a full head of hair 

Love to all xxx

[2catlady]

Hi,pam,thank you xxxxxxx

Bev,don't worry you will get to Dubai,they are just being cautious . Your symptoms will settle down so get packing xxxxxxx

Hello,billben,lovely to see you posting again.
Huge hugs,stay strong ladies,Helen xxxxxxxx

[pam01]

Hi everyone. Sorry you r not any further foward Helen.Lets hope your GP uses what influence he has...Sorry to hear the prob s some of you have been having but lovely to hear updates. Bev I think the team are just being careful. They are wanting more confirmation about how your treAtment is going......the insurance company MIA won't cover you till 60days before travel for the same reason......so you may have to get used to booking nearer date of travel!! Best wishes to all......Pamx

[Bevlaar]

Bit of a disappointing day...checked with the onc nurse (as my onc still on hol) if I'm ok to fly to dubai in nov and she checked with my previous breast onc who said as I've reported additional symptoms since last week I.e. breathlessness for which they've now put me on dexamethasone and the xray showed dome fluid at base of lung, they would prefer to see the results of my first scan to see exactly what's happening there before making a decision 😯
So will be guided by them obviously but worrying a bit now about this fluid and the implications. Its all so new to me.
Hoping to speak to some of you later on live chat
Love bev xxx

[bill-ben]

Hi all you ladies out there haven't been on here for a bit just don't know where the days have gone but have had quite a few visitors to stay! It's interesting to read how many different sorts of treatment we are all on how do the doctors decide who gets what even some of us with the same secondarys can have different drugs? I was interested to hear you are on FEC Nicky. I am due my second lot on Thursday this week. Do you mind if I ask what effects it had on your heart? I have mets in my spine ribs liver and just to go the whole hog brain as well. I've had my brain zapped and am now being weaned off the dreaded steroids (only 5 days to go yippee) but don't know what symptoms go with what!!! Luckily the FEC hasn't made me sick just totally changed my taste. I even hate chocolate now and only want fresh fruit and veg and nuts to eat. None of all the naughty stuff I used to over indulge like butter biscuits cake etc. which cann't be a bad thing! But I do sound a bit wheezey have alot of weakness in my legs (though this is probably the brain mets). It's not knowing what symptom is being caused by what! I reread all the paperwork I was given which said that the drug in the FEC mixture that starts with C cann't remember the full name can irritate your bladder. My bladder has misbehaved  several just thank god for the Tenas!!! Has anyone else experienced that. Would really appreciate hearing anyones FEC experiences. Hope you all have a good day 

[nicky08]

Hi ladies

Wow - what a busy thread we are!  Sorry if I forget anyone but have just read back on lots of the posts from yesterday, so theres a lot going on!

Helen - your BCN does talk a load of rubbish!  I was on Cape for 18 months and just had to see onc for blood results and then get my tablets from the pharmacy - no chair needed!  Also I went on several holidays whilst on them so, again, there is no reason at all for you not to take them whilst away. So worrying that she is meant to be helping all the BC patients in your hospital but she doesn't seem to know what on earth she is talking about, grrrrrrr. Hope you have a better day and don't need to keep chasing them up.

Tink - great news about FEC - I was on it 6 years ago for my bone mets and a local recurrence and had great results. Do watch the heart and blood side of things though as `I have had huge problems since then and am only just getting sorted out having gone to a specialist unit in London - sounds like your onc is on top of things though.

Tracy - as said above to Tinks I had FEC 6 years ago and found it quite do-able.  I tended to have 4-5 days of feeling a bit rough but took all the anti sickness tablets to make sure I wasn't too bad. Then I seemed to bounce right back up again and felt good for the rest of the cycle. I also worked during my 'good' week/10 days although it was very part time and found I could still get on with doing most things but maybe felt a bit tired at times.

Hi to everyone else on this thread which is being so supportive right now, as it always has been  

Take care all

Nicky x

ps have edited this as I've just found the paart on this thread about the letter from Faraway/Sara's GP.  I also have had the same type of letter but, having re-read mine, it was worded really well and certainly didn't make me think I was at the end of life!  I think if I had just had my secondary dx rather than 6 and a half years ago I might have felt a bit different about getting one but, as it is, I do feel that I will have my health needs more understood now.  Especially as I hardly ever see my GP so I'm not too sure if they know what's going on anyway!

[2catlady]

Good morning lovely ladies,yes,it's freezing and raining in the NE grrrrr. Lol oh we are never happy. I'm blaming you chocolate xxxx
Lynn is away to disney at the weekend.go Mickey 🙂

Rang onc secretary and you guessed it he's on holiday!!!! But she's put my question in the "question book" and he'll read it on Tuesday when he's back after bank holiday.
Saw my lovely GP this morning,he said he'll ring ward and try to get sooner appointment but he has no clout not like onc. He said he totally understands how stressful it is for me from suddenly having a plan to a half cocked plan. I did say the BCN is an animal that moos !( don't want to get moderated again) he did have a laugh and said he's never heard me say things like that.good job he didn't hear what I said on ward last week lol. Oh my,I'm getting to be a right potty mouth. I'm blaming the stress. God I'm normally so meek and mild and never says boo to a goose lol.
He said if I change hospitals my treatment would be delayed even more so to hang fire get this treatment going and see him again.
Bundy,I had one blast of rads on lower spine and pelvis last year. It's a walk in the park. But you will feel sick as it goes near stomach ,so get some anti sickness pills. It helped me. Good luck with them xxxx
Oh sun is coming out,chocolate keep your washing in lol xxx
Massive hugs to every one,good luck to all having appointments ,Helen xxxxxxxxxx

[Chocolates]

Morning ladies,

Bundygirl so sorry to hear about your last few weeks. It must have been very difficult for you. I hear from others that rads to the spine can be very effective but are painful initially so please look after yourself. I hope you get the other rads soon and then get onto a trial which will hopefully ease your pain even more. However, it is good to hear that you are now getting about a bit more easily, albeit with the help of a frame. I think it helps us mentally when we can get about so fingers crossed for you.

Julie - that must have been a difficult decision for you to make. I hope you are ok. How are your aches and pains - obviously troubling you at the moment. When's your next appt with your onc - I hope you'll be mentioning them.

Helen, good luck to day - I have all my fingers and toes crossed that things get changed today - both for the start date of your cape and change of hospital and onc. You so deserve to be treated kindly and fairly.

Morning everyone else, sorry about the weather yesterday. I hung my washing out and within ten minutes we had thunder and lightening. I aim to hang another load out this morning so you have all been warned. Looking forward to speaking to those that can on live chat tonight.

Just realised I missed bevs booking to Dubai. Wow - that's fantastic. Starting to get really jealous of people going away. Disney world seems very popular - who's there now I've forgotten.

Sheila - hope you are feeling better every day.

Huge hugs, hxxx

[rosie53]

Morning Helen, hope your feeling strong today, that STUPID INSENSITIVE bcn needs sacking!! This is YOUR life and health she is being arsey with. Please please go above her and get your chemo appts as your Onc wants you to have them.
Morning to all you other lovely ladies
love Janette x x x

[JulieD]

Bundy glad you managed to get to the hospital, good luck with rads hope they help with the pain and your mobility.

Helen,good luck with the GP tomorrow, lets hope he can not only put some pressure on but better still get you away from that place and the so called BCN. Thank you, and you too Chocolates for thinking of me today. I disn't manage to get to the funeral in the end I decided that as I was already tired and achy such a long journey would be too much. Liz's sister contacted me tonight to let me know it had gone wel and there were so many people they had to stand.

Roxy good to hear you are feeling slightly better, keep chomping the ginger biscuits!

Tinks good to see you posting here, I'm always pleased when FB girls continue to use the BCC forums, good to hear that on the whole things are moving in the right direction.

Hope to chat with some of you Tuesday on Livechat, I found that when I registered for chat after the overhall of the site it didn't seem to work but then I realised I hadn't scrolled down and ticked the agree to terms box! so keep your eyes open for that.

Love and strength to you all xx

[belinda]

Good to see you here Bundy. I hope the rads will help both pain and mobility wise. Take Care. X

[Bundyrum]

Hi there ladies.  I have been off the air for these last few weeks, so have spent a little time tonight catching up.  Hope everyone is getting on with getting on.  Last time I posted I was awaiting a PET scan and wondering how on earth I was going to physically get into the car to get to the scan.  I managed - wheeled office chair and a lot of ingenuity got me there.  Before the results came back, I ended up in hospital with high calcium - 10 days in hospital, and have had this last week at home trying to get rested.  Both the high calicum and the PET scan showed extensive spread to the spine, so no real shock, but I had secretely hoped it would be something else entirely.  I have recieved one blast of radiotherapy to the upper spine, now waiting for an appointment for the lower half to be done.  I want it all done now!  But there seems to be a lot of waiting.  My onc says we will see how radiotherapy goes and then maybe look at a chemo trial (gem carbo?) I will have to do some research.  My pain is being managed better now.  I get about with a zimmer frame, and have made a few adjustments at home to manage.  take care everyone, 

[2catlady]

Thank you ladies xxxxxx I've just said that to hubby about ringing onc secretary. I'm at GP tomorrow so I'll see if he can add some clout too. Ladies you are all wonderful xxxxxx huge hugs xxxxxxxxxHelen xxxxxxxxx

[belinda]

I agree, a good idea to bypass this BCN and ring Onc's secretary or failing how about your GP? All you need is literally minutes to collect your tablets. Any side effects usually take a few cycles to develop so this is long before the possibility they might take up any further time. This BCN seems to be on a mission to make things difficult. Completely unsuitable for the job.

[Desi-2]

That's a good idea Pam my onc secretary has been very compassionate and helpful the couple of times I have rung her and quite knowledgable too. X

[Porkie]

Helen

I agree with Pam - I have always found my oncologists secretary very helpful. If you have no joy from this then I would visit the hospital PALS department and complain to them. Whilst nothing to do with cancer I needed to complain to PALS about hospital treatment for my mother in law years ago but they sorted out the problem for me in a day so it is worth trying this route to. Dont give up - we are all here for you.xx

[Chocolates]

Good idea Pam. Helen this seems like a way forward - hope you feel strong enough to action. Perhaps your husband could ring if you don't feel up to it. So awful - you so don't deserve this. Hopefully tomorrow will be a better day. xxxx