Bone mets - please join in

[Guest user]

Eek - this is a busy thread all of a sudden!
I hate to read of all of you struggling with employment - I had an horrendous time when I was signed back by my employer basically refusing to take me back (I worked from home prior to dx for depression reasons) and they wanted me back in office which I couldn't do.This was in Aug 2010, ands it was a long battle, mainly carried out by my union, cos I simply wasn't strong enuf for it (what tthey were banking on I suspect) and I ended up getting redundancy in May 11 and took my early pensions on health reasons. One of them which wasn't final salary I converted via an IFA to an impaired health annuity which almost doubled its monthly payment, and I wish I'd done this with the final salary ones too - bear in mind ladies your likely life expectancy and look into impaired life pensions beofre committing to anything.
I still struggle with being unemployed sometimes and look at jobs in shops etc, but I know realistically I can't do them as I'm just not fit enuf - I can't carry without pain in my back, I can't kneel on the floor to do shelves or such like and I can't stand long either. Haven't bothered with ESA as my pensions just touch the upper limit for that - I might get a few pence but not enuf to tangle with the DWP - tho I do get DLA which helps a lot.

Val it's not a pleasure that you're getting met pain but it is a pleasure to be able to give you advice for once as a thank you!! My first lot of rads to my lower spine woirked pain wise but did crucify me physically - I had 4 zaps and in my central area, which affected my digestive system and wasn't fun. The next zap on my hip tho was a piece of P by comparison and did the pain and had no side effects so don't worry too much. Hopefully it will do the trick pain wise without too many after effects.

Dawn - you commented I asked about you - it's only cos you'd not posted and like Val from an earlier poster, you were my initial inspiration when I had my bone mets and I feel a bond!!
Now for me - I had bone scan yesterday and checked with the department the results would be ready that afternoon. My onc clinic appt isn't til Friday. I hate waiting as we all do, but tried a back door and rang my old BCN from primary days!! She knows my depression and how low I can get and rang me this am with an unofficial 'you're stable' report. I could kiss her - I didn't care if it was good or bad I just wanted to know - andf now I do. Might be useful for others depending on their relationship with the BCN. 3 more cycles of my favourite happy medicine Cap here we come!!
NIna

[spookymoo]

Dear Val I often pop in and "LURK" and sometimes see your posts which are always uplifting and positive. I am sorry to hear you are feeling so much pain and discomfort and it must make you so low. It sounds like you have a gem of an OH l looking you after you. I hope that your team manage to sort out your meds to give you some relief with your pain and symptoms and I hope things improve and you are able to feel a bit more positiv. Sending hugs to you. Em x

[Guest user]

Big hugs Val.
I hope you get the radiotherapy soon. It did wonders for my back ache (well, until the vertebra collapsed). Before my rads, I was getting rib pain and all sorts, but now it is mainly in my hips. If not, can you see a palliative care person to help you find the correct combo of pain-killers for you?
Sue

[lizcat]

Huge hugs Val xx

[scottishlass]

Consultant phoned me this morning with results from recent bone scan. The pain in my arm is related to my bone mets unfortunately and she is going to refer me now to the Radiotherapy Oncologist to discuss treatment to help me with pain in lower back and forearm. I am disappointed because I kept hoping it wasn't BC related. But at least I know now and have increased my MST to see if I can get the pain under control as pain can be very draining.
I too retired early and was one of the best decisions I ever made. My OH managed to get early retirement too although I think he works harder looking after me than a whole ward of patients ( he is a retired nurse). I think I would starve without his imput as I have no energy at all just now and it takes some coaxing for me to eat food, something which was always high on my agenda as I loved food and cooking and baking too. I have just shared a Salade Nicoise with him which made a pleasant change and yesterday we had Cod's Roe and lovely bread and butter. Much easier to eat that a huge plate of food and just as nutricous.
I am glad livlassie that I was able to reassure you abit when you first joined this site. It is a shame that I find it very difficut to give new peope support here now and am hoping with fingers crossed that once the new improvements are made it will be easier to navigate and get back to thread you were once following. Keep well girls. There is life in the old dog yet (me!) so I will not be going anywhere else soon. Just need to get through this new chemo regime etc. But I have been there before and hopefully I wil be abe to get off for a well earned rest in early summer. That is my goal anyway. Love to all, Val

[lizcat]

Mel - thanks for the info. Will look into it once I've had scan results. x

[Buffy3]

Hi Liv, I am hoping to return to work, was diagnosed July 2012 (primary n sec at same time) Am on chemo at mo as mets spread while on tamoxifen. So am exhausted all the time. I know some of the tiredness is due to chemo but I do hope it improves. I am a deputy head in a primary school which is a full on job...just hope I will be able to return. I know many ladies have decided to retire/ stop working...am 42 next week, too young not to work but I know I will take advice n see how I am a few months down the line. I was working with groups in the morning and office stuff in the aftetnoon. I guess am trying to get some goals! I suspect there will be more drugs for my body to get used to. So have decided to take one day at a time before I make any decisions. Already had a dreadful meeting at work involving a very straight talking HR lady who quite clearly was saying things about early retirement and dismissal. I shall be taking my union rep with me next time to fight any battles that may arise. Thats for later..not now.
Liz acupuncture is good for other things too...the clinic I attend is for pain relief as well. I certainly feel relaxed after it. Makes your body produce endorphins ( spelling!!!) as well as other benefits! I am not sure how it works but definate worth a go. My hospital provide it free.
Off for a nap...having lots of visitors today..next lot due in an hour...I just lose energy fast from the chatting. Nice though.
Love Mel x

[livlassie]

And so sorry for my careless typing! I need to slow down. X

[livlassie]

Val, i hope you maintain your wieght and feel better soon. You were the first person to reply to me when i first caam on here all lost and bewildered. You are very special and although i haven't been on here much since the changes to the forum, i alwayd take an interest in your posts.
Ladies i read allthe posts about how your partners react to the cancer. My man will not talk about it and although i do understand it can get lonely as i have two sons who won't talk about it either. Sometimes i wonder if they care or take it seriously. I know in my heart that they do, but as women we talk about everything, don't er?, so the deafening silence is so alien to me.
You ladies who keep on working are brilliant! I tried to go back but was so exhausted that i realised pretty quickly that it was not for me, so i was medically retired. With my small pension an DLA on top, i'm ok -ish! Life is so different now though and i really need to take myself in hand and start doing something to fill my days. The seven months since i retires have been a bit boring, if truth be told.
Hugs to all of you

[lizcat]

Mel - do try chat, it's fun and you will recognise a lot of names I think. You don't have to contribute to any of the chat if you don't want to or just want to get your 'feet' and read for a while. I'd never done a chat before this one and it did take some time to get used to but now it is part of my normal weekly activities and people know not to ring me on a Tues night!!
I have been posting from my kindle sometimes and other times from my laptop so think there can be some delays in my post appearing. Good to know about the acupuncture - may have to look into it and ask next time I'm in clinic.

Liz x

[Buffy3]

Hi Liz, your post wasnt there when I posted! The acupuncture has had some effect but bec of xmas and my chemo havent been able to have it every week.The hot flushes were really bad over xmas/ new year when didnt have it for 3 weeks. Have been shown how to self needle now...only on my feet...so may help too.
Must try live chat..
Mel

[Buffy3]

Katie, I spent about 20 mins removing snow from my car, so that must count as exercise. I think I over did it yesterday!

[lizcat]

Claire - good for you standing up for yourself. Not that you should have to, of course. I sincerely hope they respect what has been agreed and you don't have another fight on your hands.

Mel - although I didn't have acupuncture for hot sweats I was on a trial for Christies for it and was in the group that didn't have it. As far as I know, it was quite successful so hope it works for you. Hot sweats are just awful.

Off to live chat now.

Liz x

[Katie2002]

Claire - just had to say well done u!!! It's bloody awful we have to shout for everything but really pleased you got what you wanted.
Mel - did u get out today for a walk? Pavements here are terribly icy. my fingers are crossed for u that u can get to your chemo, here's hoping the weather will start to warm up x
hello to all x

[Buffy3]

Claire..good for you but makes me cross that you had to shout to get what they should be providing for you. Grrrrrrr. Its so wrong. I hope my employer will be more understanding! Had acupuncture today...its supposed to help me with my hot sweats I have. Car nearly didnt start...but perservered and it went! Now is snowing again...as long as I can get to my next chemo on Friday. Really dont want it delayed even though I feel so ill after.
Keep smiling
Mel x

[myfanwy18]

Hello Boney ladies,
Sorry not to be attentive to your posts but as some of you will realise I'm battling away at work. Saw HR woman this morning, I was in no mood for lies. I barked, shouted and was as aggresive as I could be, result, I've got want I wanted and hopefully they'll leave me alone now. I felt, fighting cancer is much more of a challenge than these sad folk!
Claire

[JulieD]

Hello all my boney friends,
Sorry so many are still struggling at the moment. Very pleased to hear your news though vercors!
I was retired from work young due to clinical depression, even before my secs dx. I must say I am in awe of all of you who manage to continue to work,I know I wouldn't have been able to do so. Keep fighting your corner girls,though it's terrible you should have to.
Missed my Onc appt today because snowed in! Thought we might start thawing and even saw a bus today but then it started to snow again so still stuck indoors.
I think it is very hard for our loved ones to face up to the realty of our situation and that in turn makes life even harder for us, that's why these forums are such a blessing! I'm actually very lucky and my partner will talk about things, maybe that's an advantage of having a female partner. Mind you it means we are both in tears sometimes !
Keep warm xx

[vercors]

HI Ladies,
Last night for the first time in a long time, OH asked how I was and if I was in any pain. I figure he wanted to know whether he should worry about the results today. He was surprised when I said I was not expecting good news due to the pain I have been having for a month. He is not a talker and it is his way of coping. It is hard at times but as someone said, I would not want to be in his shoes either.
Anyway, we got good news today, no progression, so the treatment is doing what it was supposed to be doing.

Sue,
Ask your GP to write a letter telling you HR department that you cannot lift the equipment that you are given for work. Your employer has to make provision for you and give you a lighter laptop. I admit I am really lucky with my employer. I asked for a lighter laptop and got it within weeks. I can come and go as I please for hospital appointment. No one asks questions, to the point that someone in my team this morning was concerned because I was not online. I absolutely love working from home. If I need a 15 minutes break, I take it without being concerned with what people think.
Take care and wrap up warm.

[Guest user]

Hi Ladies
Sorry, Rocketqueen, I can't help either. I hope the MRI comes back clear. Have you )or your mum) tried taling to her BCN/McMillan nurse?
Grrr to all of those fighting about work. I changed bosses at the end of last September, just 4 weeks before my secondary dx. My boss just doesn't seem to get it at all. Since my back surgery (replacing T12 with a couple of titanium rods), I have not been able to bend down to far or lift "heavy" weights. I have managed to build up to lifting about 2 kg, but that does make carrying a laptop (plus associated power supply, mobile phone etc) a physical impossibility. So currently I have to work from home (and have dh set up my laptop before he leaves for work). Of course, the onc and orthopaedic surgeon can't predict when/if I will get more strength. But my requests for a lighter laptop do seem to fall on slightly deaf ears.
Claire, I am also pretty sure that dh either doesn't realise the seriousness of my diagnosis or he is sticking his head in the sand. He seems surprised that I am appliying for a blue badge and also that the aches and pains in my hips may never get completely "better". Yes, the symptoms may come and go, but the worry will always be there and I suspect that I will never be able to do everything I once could. Even before my secondary dx, he struggled to understand that getting out of breath climbing 2 flights of stairs to work wasn't a symptom of being un-fit, more of being un-healthy.
Mel, woohoo to a 15 mintue walk. It must have felt great to get out in the fresh air.
Sue

[nicky08]

Hi ladies, and hugs to all, especailly those having to fight their corner. It's so bad but there does seem to be a general lack of information about Secondary BC and all the side effects and problems we have to live with daily - not just once in a while. I could go on but will get too angry! It doesn't excuse anyone though, particularly employers, who don't listen. Maybe drop them a copy of the Disability Act on their desks 😉 I am lucky that my current work is very part time as I don't think I could cope with a full day or full week. Having said that I've had to take a drop in salary to take a job that suits my condition rather than work longer hours than I used to now that my kids are grown up. You just can't win can you - try explaining that to DWP who are on my back at the moment with a review, grrr. In fact, reading my post back, that's the corner I'm fighting, when I shouldn't have to.
Anyway, enough moaning from me, I hope you are all keeping warm and safe and hugs to anyone needing them right now (Claire especailly!). Look after yourselves.
Nicky x
ps Rocketqueen - sorry I can't help with your question, hopefully someone else may have come across this problem before and can give some advice.

[Buffy3]

Katie, I could do with a giants hat 😉 I know I now went for a walk as have come over achy! There again I havent needed pain killers today but have just taken some now. I guess I need to exercise a bit more!! I cant believe your headteacher hasnt got back to you reg parents eve. I would think doing a few over a couple of evenings would be fine. Grrrrr again Fight on ladies love Mel xx

[Guest user]

Hi
Hi another question regarding my mums bone mets. She has other symptoms and her hormone levels are erratic. They want her to have an MRI to check her pituitary gland and I suspect to look for any masses. Any ladies know anything about this or effected with hormone levels as a result of the pituitary gland. As always your help is much appreciated. Thanks in advance .

[Katie2002]

Claire. - just read your posts. Am also sending you a big cyber hug. I'm sorry you are having a bad time. My OH doesn't ever talk about my bc. He tends to bury his head too when I talk about the future. It must be really hard on them. Don't think i'd like to be in their shoes in a way. like us they can't control the situation or make it better. I can tell my OH just can't find the right words. He isn't the most talkative at the best of times. As for work - are you in a union.? like Mel says work is an odd one. I'm enjoying being back but I do feel ignored by my boss and a bit of an inconvience. He tends to ignore my Emails. I felt bad asking if I could spread parents evening over a couple of evenings as I get so tired after a full day and I seize up if I sit for too long. he hasn't come back with an answer. I'm not going to give up though and if you want to work neither should you. We still have a heck of a lot to give. We just become fighters don't we...fighting this bloody disease, fighting for our rights, fighting to be heard... As if we haven't got enough to do.
Mel - on a different note good for you getting out! Did the wig keep you Nice and warm? I only ventured out for school run. We ended up getting a surprise dumping of snow today. Full of a cold today no energy. Knitted a hat this afternoon that could fit a giant! Hey ho
looking forward to Miranda and mr brown's boys. They always cheer me up.
Love to all x

[Buffy3]

Claire Its very hard for family. My parents found it all very hard. Infact my dad was in denial for ages...when he did finally speak to me he went on about all the friends he had lost!!! Really helpful! They are being a bit more supportive now but are not local. My OH lost his job just before my dx which has been good in some respects but hard for him not to work. I have needed him to help get througj chemo. I know he is finding the job search tough plus my dx he has found hard. He goes quiet on me when he is down. Its hard to keep positive, I have to think of having strength at mo...se

nding another virtual hug xx Mel

[myfanwy18]

Thanks Mel,
OH has just stormed off when I got a bit negative about the future. I know he worries but putting your head in the sand doesn't' really help either of us I suppose.

Claire x

[Buffy3]

Claire, big virtual hugs heading your way. Your post wasnt there when I wrote mine. Work is an odd one...I spoke to someone at my place today, am sure she was suggesting I leave...am not able to make any decisions...I certainly would like to go back, when and if I am ready. Scans are always a worrying time, my OH worries as much as me. Having said that he seems down at mo...which is hard for both of us. I am not sure many people understand our illness, I dont really i have a clue myself. Keep strong if you can. Love Mel xx

[Ramsfan55]

Happy new year to all Boney Ladies. Just got back from holiday and feeling quite relaxed! Weather in Derby is a nightmare but enjoying cosy nights in! (Boring aren't I??) just been catching up on everyone's posts and I would like to wish big hugs to those who are having wobbly times. It's funny how little blips can frighten you silly but also treatment plans can really calm you down. I find reading the posts on here really help me to keep perspective as well as helping me to stay optimistic. Occasionally we get awful news when we lose a friend and that has a big impact, but I hope as years go by we will contine to see the benefit of improved treatments. That's my prayer for 2013 anyway 🙂
i was really pleased just before we went away cos my first mammogram since all the bc treatment came back clear!! I am grateful particularly as I had some bone progression last summer when the aromasin stopped working. I seem to be doin ok on tamoxifen thank God, although I still get tired and periods of aching, but not as bad as the aromasin.
love to all
suzanne x

[Buffy3]

Hi Joanne, I had a similar issue when the tomoxifen was ineffective. My hip has had rads and this sorted out the pain. I then had more multiple mets in multiple places and am now having my 5th chemo Friday. Scans showed lump smaller and bone mets stable after 3. It has been a tough roller coaster ride.
Liz well done for getting the bone scan results early. As you said to me its so important to know what is going on inside our bodies. It looks like many of us are having scans at mo. I'll have more soon.
I was proud of myself today. Have felt so tired most days however today I found my wellies, donned my wig ( for the first time) and had a 15 min walk in the snow. It really was pretty. Wow how good did I feel after. Small step but fantastic for me!!!
Take care
Mel x

[myfanwy18]

Hello boney ladies,
I'm feeling a bit sorry for myself tonight. Had a horrible day at work, they keep moving me about departments as soon as I get settled somewhere. Today they told me I was to work in the basement sending files to storage, very much a demotion. Think they are trying to get me to leave. Then OH comes home and complains I don't ask him about his work which I do. In the end I had to say well "you haven't got a scan result on Thursday have you". I hate having to point out to people I've got secondaries and that its quite serious really. Don't think they will realise until I'm dead! Sorry but I'm feeling like nobody in my world really has taken on board my illness and how serious it is.
Claire x

[lizcat]

Hi Joanne - sorry to hear the letrozole has stopped working and there is some progression but at least you have a treatment plan in place and can start whacking the evil little cells. The waiting and suspecting but not knowing is the worst. Keep us updated!
Onc's secretary emailed back to say she had spoken to onc and it will be fine for me to have the report before I go to clinic late Feb. Scan was only done on Fri so report not in yet but secretary said she will check daily. She's a lovely secretary!

[Katie2002]

Hi Liz - there is a possibility the meeting could be on. The decision will be made tomorrow morning. It's been quite bad here in Bolton for snow and more is predicted here according to the BBC website for tonight. It might well be clear in Liverpool. I'm not going to risk it as I don't want to be worried about getting stuck. I am disappointed as was looking forward to seeing everyone.
Katie x

[joanne130]

Hi
I posted back in december because it looked like letrozole had stopped working, well just a quick update. I had a bone scan beginning of jan, results showed slight progression in right hip (which I suspected) and some new small areas on my spine. The outcome has been, radiotherapy to hip, still awaiting ct scan to check for other areas, but onc is farly confident they should be no hidden surprises. Once ct scan done and results in I'll be starting on 6 cycles of taxotere. Now I know what the plan is i'm ok about everything again, it's surprising the calmness when you know what's going to happen.
Joanne

[lizcat]

Nicky - that is a good idea to discuss your worries with the onc. I have emailed my onc's secretary to see if protocol will allow me to have a copy of the bone scan report as soon as it's available rather than wait til CT one is in as well. She knows I'm an old hand and I've promised not to panic so she's going to speak to onc. I am at hozzy next week for my zometa drip so have said perhaps a nurse could give it to me then....we will see.

It's snowing here but only the tiniest of flakes and not sticking but it looks like tomorrow's BCC meet-up will be cancelled because of the snow . It will be a shame to miss meeting everyone but if there are travel problems then better to be cautious.

Hope you are all keeping as warm and cosy as poss.

Liz x

[nicky08]

Hi Sue
I think I may need an MRI as well if the CT scans don't show what the problem is. I don't expect them to as I know they don't go into as much detail as an MRI but it's a starting point to compare with my last one to see if there is any progression. Also I now have an Onc appointment this week so at least I can have a chat about my worries and see what he makes of the Xray that I've already had done of my hip and thigh.
Keep safe in the snow.
Nicky x

[Guest user]

Hello Ladies
Liz, I hope you practise nurse is good with veins. I had a blood test at mine, and she got one first time - I was quite surprised.
Nicky, I hope the scans give clear pictures. My orthopaedic surgeon doesn't hold much store by CT scans, so even though my onc has referred me for one (also this Friday), the surgeon is sending me for an MRI to check for any more spinal compression. I have slightly wobbly legs sometimes and they feel as though they may not go in the direction I want them to when walking (it's difficult to explain that one). I was up at the hospital on Friday and the surgeon and his reg checked all my reflexes (which came out fine) but are sorting an MRI appt to see whether the wobbles are down to nerve damage before my surgery or ongoing damage from S1.
Val, I hope you manage to maintain your weight and the blood transfusion has given you more energy.
We have a bit of snow here and are threatened with 2-4cm overrnight. I am sure snow has got more dramatic since they stopped measuring it in inches. 10cm sounds so much more than 4 inches. We ventured out as Amy fancied sledging. We don't actually have a sledge, so she tried sitting on an old hold-all. Either the snow was too sticky, or the bag too rough or our road doesn't have enough of a slope. Whichever, she needed dh to pull her along. She enjoyed it and I could stand with my crutches near the house and watch it all. Then it was back in for hot chocolate.
Hope everyone is home and warm.
Sue

[lizcat]

Writing on laptop rather than kindle so this will be a longer reply! Wanted to reply to Val and Dawn earlier but it was taking ages and I was tired....crap excuse I know.

Val - am sorry to hear you are still having such long journeys to the hospital. It really doesn't help does it? Do you want some of my fat to replace yours? You are more than welcome!!! Seriously, hope the chemo is working even in these early days so that makes the side effects worthwhile. Good on hubby for pampering you - he's a gem.

Had my bone scan on Fri and oncology nurse managed to get a vein with a fine cannula on the second attempt - nuclear medicine are just grateful for any size of cannula!!! CT scan is in mid Feb and apparently requires cannula and drink - great!!! Appointment for results and discuss denosumab etc, etc on 21st Feb.

No snow here, not a flake. Would have liked a little bit just to make it look pretty and build a tiny snowman. Off to Liverpool on Tues for the BCC secondary meet-up and hope to see a couple of you ladies there. May have to fit in a spot of window shopping while killing time before train home.....Then have the joys of going to the GP surgery early on Weds for the nurse to do a blood test in connection with blood pressure tablets. She has no idea my veins are not the best!!!

Enjoy what's left of your weekend and keep warm and safe.

Liz xx

[nicky08]

Hi Ladies
Thanks Val for posting about Alesta/Laurie - as some of the others have said it's difficult to track some people since the forum change, if you are speaking to her on FB please pass on my good wishes.
Hi Liz - sorry I didn't reply sooner but we've been away in France at our daughter's graduation. Luckily our trip wasn't disrupted by the snow so we got there and back without a problem, but it was bloomin' cold! Yes, it might be we're in the same situation, at the moment I don't really know. I had read about your leg pain before which is what has got me worried! I've had an xray done - not sure that it is appropriate as I don't think my GP would know if there had been any changes. However, when we got back on Friday I had a letter 'inviting' me for a CT scan - yikes! I do know the GP was going to request this but it's a bit scary as the only CT scans I've had in the past 3 years have been when I've requested them, not medical people. Oh well, I do need it sorted as I still have pain and it could be down to a trapped nerve which, again, could be caused by bone degeneration. Will keep you posted.
Hi to all other bone mets ladies, hope you are keeping safe and warm away from the snowy and icy roads, and that all pain control and other treatments are being kind to you.
Nicky x

[lizcat]

Dawn - as you say you are stuck but the pain is obviously having a big negative effect on your whole life so the op sounds the best solution. Take strength from the lady who has had success and I'm sure you won't look back xxx

[dawnhc]

Nina thanks for asking :). I have been in touch with someone who has had the procedure done very successfully. Strangely she was on a very similar path to me with the various pain meds when she had the op. The Pain Consultant has been in touch with me and says the neurosurgeon sees no problem with the rads burns on my skin and I am just waiting now for a date. I must admit I am a bit scared but I just can't go on like this. If I didn't set my alarm to get up I suspect I would sleep most of the day. As it is even when I have had a good 9-10 hours sleep as soon as I sit down in the armchair I fall asleep again. So I am looking forward to getting 'me' back and for getting better pain control with considerably less medication. I am also a bit nervous of having something inside me over which I have no control if it goes wrong! other than getting to someone who can fix it. But if I don't go down this route things are just going to get worse. Between a rock and a hard place I think!

Dawn

[C_Jo]

I don't post often but thought I would let you know about my travel insurance. Eurotunnel (yes it is the same company-strange but true) have given me a worldwide year long policy for under £80. Does not matter what illnesses you have, I told them about my bone mets etc and alll you require is confirmation from your GP or Consultant that you are fit to travel and trips must be under 31days each.
i am over the moon.
Otherwise I am stable and have pretty good pain control.
Good wishes to you all. Claire

[Guest user]

Val,
I hope your getting good rest and hav e enjoyed the goodies .

hang in there, take care of yourselve. sending a very gentle hug and good vibes.
I havent been around for ages, doing well no change in mets and can mobilise with one stick.
I'm still racing the other grannies in my electric buggy, Marge in Benadorm move over I'm coming though.

Glo

[Guest user]

Oh Val - so sorry - you and blood!! Are your veins OK - could you have a blood test a couple of days before at the GP to save you going into the Western - I know what thats like asnd it ain't easy!! I think if I were you and could do that I would even if it was weekly. It's hard getting appts with our practice phlebotomist cos she's boked up with - guess what? - chemo patients who prefer her to the hsopital and book in advance!! Thats what I'm doing now - thank fully with CAp its 3 weekly not weekly but I book one appt as I leave the surgery after 'extraction' of blood!!
Hope you feel better in the morning.
Gentle hugs to all boney ladies - Dawn - any news of your new pain procedure?
Nina

[scottishlass]

Been to have my chemo and arrived at ward at 11 30 only to find out that my HB was 8.3 qand I needed 2 units of blood and so did not get back home until just before 7 30 so a long long day for me. I have also lost more weight and now only 60 kilos so not a happy bunny so my OH brought me in food and supplies to feed me up while I was having my treatment. I am now wearing my jammoes, electric balnket is on and I am heading off to bed very soon.
Truddles glad you are glad tha alesta is fine. A bit of a mix up but glad it all worked out fine in the end. I cannot manage all these different names from site to site. Too old and too filled with chemo drugs to function well! Well that is my excuse. Val

[trudy2010]

So so glad you posted Val. Although im not a secondary lady, i read these threads and have been thinking a lot about Laurie /Alesta. She was such a regular poster so its great to hear shes doing ok. xxx

[vercors]

.

[vercors]

Oops I had not seen your second post. I am not awake yet. I Pmed you as well. I need coffee.

[scottishlass]

I have just spoken to alesta29 on facebook. She is fine and is just not posting on here right now. (sigh of relief) thanks and sorry if I worried anyone. I feel like a shepherd tryng to keep her flock together! Blame it on my chemo brain!

[scottishlass]

Anyone heard from or about alesta29? I am fearing the worst and have been searching for a recent post from her. Any news would be good. Val

[Lisalauren]

Thank you Dawn and Pam x

[Guest user]

I discussed Denusomab with my consultant. I am curently having zometa. He would not consider me swapping at the moment because they are just getting system set up for newly diagnosed secondary ladies...and I do not have specific indications such as renal impairment to justify switch. Research would indicate slightly better outcomes in terms of " skeletal related events" with denosumab ie fractures, vertebral collapse and spinal cord compression but research was not done on women previously exposed to zometa. There is however a slightly higher risk of osteonecrosis of the jaw. I'm not sure if it counts as a hospital treatment or if that influences travel insurance quotes. Pamx