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Bone mets - please join in

belinda
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Re: Bone mets - please join in

Oh what a shock for you Helen, think bruising and bleeding is worse 'cos of being on chemo? Hope the docs sort you out today and you are back home asap. Take Care. X
2catlady
Member

Re: Bone mets - please join in

P.s,ladies that have had injections . Did you bleed. Just looked at tummy and thought what's all that blood. Then looked a duvet with has blood all over it!! Sometime in the night I must have been bleeding from injection site.
Hugs,Helen xxxxx
2catlady
Member

Re: Bone mets - please join in

Morning ladies,thank you for the info.
Geordie,it's a ct scan I'm having but not one that looks at soft tissue ( that's the one I'm having at rvi)
This one only looks at the blood vessels in lungs to check for clots,different dye ?!

Omg! The thought of giving myself injections ,yikes. I'm such a wimp when it comes to even think he nurses doing them!
Hugs ladies,I'm back off to hospital soon as they let me out on condition I'd be back, Helen xxxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi ladies
Great news Mavis, long may it continue.
Helen, it's good you have (eventually!) seen someone who is talking sense and explaining things. Hope the CT is booked and the results are good 🙂
Regarding the blood thinning injections I had Heparin for about 6 months following a TIA I had in 2013. The trick is not to pinch the skin too hard when you inject as this is what causes the bruising, or so I was told by one of the nurses. I managed to get it down to a fine art with little bruising but at the beginning I looked like I'd been beaten up with a rolling pin;-) Not a good look but at least it was hidden from view as I had them in my stomach. I moved on to blood thinning tablets and had been advised that chemo and warfarin don't mix, mainly I think because warfarin is a precise, but variable dose whereas the injections and newer medications are just a fixed dose. Still on the blood thinners now and no problems with them so do ask if any of you need more info. I've been lucky enough to be treated at The Brompton Hospital in London and seen by some top cardio-oncologists so I am confident on their treatment plans and prescribing, something I wasn't with my local hospital.
Nicky x

geordiex
Member

Re: Bone mets - please join in

and that must mean your getting a ct scan Helen xx

Macie40
Member

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Hi Barton I had PE 2 years ago and had fragmin injections for 6 months the transferred to warfarin daily I am also on capecitabine 14th cycle so am quite interested in what you said about chemo and warfarin although I haven't experienced any effects from it I will be asking oncologist on Tuesday what the risks are.
Helen I hope you get some relief soon with your breathing what a good thing you went to the hospital when you did sending you love and hugs from Macie x x x

Barton
Member

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Hello Helen, I am so glad they have got to the bottom of your breathing problem! I had a DVT back last October, and have had to give myself a Fragmin injection every day, and have been told I will have to do that for as long as I am on chemo (and blood thinners of some sort for the rest of my life). If I have another break from Cap (or any other chemo I might have to have later), I can change to an oral blood thinner - although Warfarin is not possible as it and chemo don't get on. The injections are OK to do myself, but, as you have mentioned, the bruises are spectacular! And it stings!     I hope everyone else is coping ok, and having minimal se's. Hugs, Barton.x

2catlady
Member

Re: Bone mets - please join in

Hi,thank you ladies xxxx he said I may need injections every day if clots show up. Already have bruise on tummy,a rather painful injection too,yikes !!!
Hugs,Helen xxxx
belinda
Member

Re: Bone mets - please join in

Fantastic news of your markers Mavis! X
belinda
Member

Re: Bone mets - please join in

I had a blood clot to lung when my hip fractured from bone mets Helen, had injections and six months of Warfarin.
Glad you are home. 🙂 x
Tinkerbelle
Member

Re: Bone mets - please join in

Hi Everyone,

 

Just wanted to say, good grief Helen! Your ONC needs a kick up the backside.  Thank goodness you were seen by someone sensible.  Blood clots in the lungs can be extremely serious. Hope you feel more comfotable soon.

 

Great news Mavis!

 

Good thoughts to everyone having scans, getting results, or just feeling rubbish this week.

 

Tink x

 

2catlady
Member

Re: Bone mets - please join in

Good evening lovely ladies,
Yippee Mavis that's fantastic news xxxxx

Janette,glad you are getting some help xxxx
Thanks Geordie xxx

Still here,oh St Lucia,wow,so glad you had a great time.
Yes,I have heard that they can get a bit OCD and attack healthy cells too.

Well,have been in hospital all day as couldn't breathe again.total panic. Awful. But met a fantastic consultant ,so kind. He explained everything to me. ( just like my onc,MOT!!)
He thinks I have clots on lungs. So I've had a blood thinning injection ( apparently my onc should have done that. Ha ha ) and been allowed home as long as I go back in tomorrow morning for tests,so yippee I'm home.
Huge hugs to everyone, helen. Xxxxxxxx
rosie53
Member

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Yey Mavis that is great news!!! So pleased for you 🙂
hugs Janette x x
rosie53
Member

Re: Bone mets - please join in

Hi ladies, hope you are all doing ok today.
Helen, i so hope your appt comes soon, nothing ever seems to be straight forward for you!!
Shelia, hope your scan goes ok today.
Well i phoned the lady from Macmillan Welfare Rights today who sorted my PIP forms out for me and i explained to her about me not being entitled to SSP, she is going to come and see me next wk with forms for ESA, you can work and earn up to £101 per wk and get that so will see what happens with that.
Hugs to all Janette x x x
sivam
Member

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Hi Everyone, after a long wait for appt with Onc re my Scan, the news was good, everything on the screen was almost the same as my scan 6 months previous and my cancer markers are down from 1600 to 600, so yipee something is working!!!I went in expecting the worst as the pain in the ribcage is quite bad, I fairly skipped out of his office.The brain was not scanned, I have some nasty cells in the meningual space above the brain and lately am experiencing quite a problem with Tinnitus,I meant to tell the Oncologist about this but as he delivered the good news, I completely forgot, hoping that the drop in my cancer markers means that the brain is stable as well. Capecitabine seems to be helping me, even though the dose is lower and taken over a longer period. I have more energy and am back out and about socially and braving the "bugs", feeling something of a fraud being the subject of so many prayer groups and countless cards and flowers, for this "dying" woman. Long may it carry on, reading your comments and advice has been so helpfull Thank you all so much xxLove and Light xxMavis

Stillhere
Member

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I've just watched the Panorama programme on Iplayer, I've been lucky and have just got back from 10 days in St Lucia, was so magical!! I thought that the programme was a bit depressing to be honest, made it sound as though all treatment fails fairly quickly. I've mentioned before that my younger son is working on cancer immunotherapy, at the Royal Free hospital, not ICR. It's incredibly complex as engineered immune cells don't behave as normal immune ones and can attack healthy cells, think I've got this right? So much more work needed. I keep telling him to hurry up!! Hope that everyone is OK, nearly springtime xx
geordiex
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geordiex
Member

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Hi Helen immunotherapy is available in this country according to breast cancer research ,apparently is up to your onc to put you forward for it xxx

LemonDrizzle
Member

Re: Bone mets - please join in

Good afternoon everyone
Not watched Panorama yet but will do later.
Natalie, so unfair that you're not entitled to ssp, make sure you find out if you are entitled to anything else though.
Bev, it's great to hear that your breathing is back to normal a it's about time you had some good news.
Helen, shame you're not going to Chesterbut it will give you something to look forward to later in the year. Chester is lovely and I used to take my class to the zoo every year because it's so good. You'll have a fab time when you do get to go.
Sheila, good luck with your scan later and hope you don't have to wait too long for results.
I'm off to Manchester tonight to watch Peter Kay and it's the first time I've been out (except for meals) since all the hospital appts and treatment started this time last year. It had better be as good as I expect it to be!
Have a good afternoon everyone
LD x
roxy12
Member

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Hi Helen,

I am so frustrated with your onc! You should be having an emergency scan with all the pain you are going through! Hope you get one very soon and then onto a better treatment.

Hi Chocolates, I'm not bad thanks. Going for my scan at 5 pm today. Onc is including a scan of my head as I have watery eyes which are very uncomfortable especially if I try to read or watch TV or even use my computer to send a post. He doesn't think anything will show up as he thinks it may be the chemo or the high calcium. (They can both cause this problem apparently) my calcium is normal now thankfully. I will see him next week for results.

How are you? Are you still busy at work? Soon be half term.

Hope everyone is doing OK. I am going to watch panorama now with a cup of tea. Got to make sure I am hydrated!

Love to all of you. Like someone said, we feel that we know each other even though we have never met. Sheila xx

 

Bevlaar
Member

Re: Bone mets - please join in

Yes the Panorama prog was really interesting and well worth watching but it does make you wonder how many of these newly developed drugs will end up in the cancer bin due to them being too expensive!
Had my appt at breathing clinic today and Doc was pleased to see me looking so well and the breathing back to normal.
He said though its strange. ..whenever ive had bad news about progression following a scan, i seem to look and feel better!
But apart from that breathlessness and cough I'd had, ive no other symptoms....
Ah well my 2nd round of carboplatin tomorrow so will be 3 or 4 duvet days for me next week.
Hope all you ladies are doing ok and best of luck with any results this coming week xxxxx
2catlady
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Re: Bone mets - please join in

Good morning lovely ladies,hope we are all okay.
Yes,chocolate,everything is such a fight and we/I just don't have the energy. They do everything for PBC but us SBC patients seem to come second in every thing.xxx

Kaye,hope you're waving your welcome home banner at airport,yippee to your baby is home xxxx

Saw,panorama program,sad but interesting. God I wish they'd hurry up with this immune therapy treatment . Apparently hubby said its been okayed in Europe but NICE are looking at it for UK ,so I reckon it will be too expensive and binned with other life lines.

Natalie,it's terrible your not entitled to anything.especially after working for so long and paying into the system,totally shocking.
You need to become either an alcoholic,druggy , have 15 kids or too fat to work or the "bad back"and they will throw money at you.😁.
Hoping I'll here something from onc. soon.but not holding breath.
We have cancelled our little hol for CT scan. We were going to go to chester as I wanted to go to zoo after bbc "our zoo" I'm easily pleased lol.

Now,I know I've been a bit lax in not signing in for roll call. But some ladies will be joining me on naughty step if we don't hear from you soon 😘😘.
Has anybody heard from Hilsy,she was really poorly before Christmas and I am fearing the worst.

Huge sunny NE hugs,helen xxxxxxx
Chocolates
Member

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Morning ladies,

Helen, on the naughty step again I see!!!! I'd definitely be on the naughty step if I met your onc. I'm so frustrated for you. I've got everything crossed that things move quickly and if appropriate yu can have the drug before the cdf stops it. Why is everything so difficult for us ladies. In the meantime look after yourself and I really hope you can get your pain under control as that always makes us feel much worse and miserable. Did the onc change your meds? Have you asked the gp, or spoken to someone at a local maggies or hospice. You shouldn't have to put up with this. I really hope you get a prompt response by email and things get moving.

Isn't Bertie's son due home today - how exciting - so happy and pleased for you. Such a special time. Enjoy every moment.
Natalie - that's so disappointing about you not qualifying for ssp - what a joke. We're trying to do the right thing and get punished for it. No wonder people live off benefits. Could you look at an extra benefit employment support benefit as you've dropped yur wage to supplement things and offset any time you were off sick. It might be worth contacting yur Mac advisor or cab to ask for their help. Get as many benefits as you can - this will take the stress and anxiety away for you.
I watched the panorama program this morning - for once it wasn't political and was well put together I thought. The only thing is why does it work for some and not for others. That's the key isn't it. However, it is very promising for the future - for me I'm not sure but things are changing - and admire everyone who does trials as its for us really and means we have had a better quality of life for longer. To that I'm grateful.

Hello everyone else - have I missed faraway - haven't heard from her for ages. Hello Sheila and Mavis - hope you're doing ok. I hope everyone has a good end of the week and if you have results/scans/treatment I hope they go well.

Huge hugs everyone,
Hxxx
rosie53
Member

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Hi ladies, just to let you know there is a Panorama report on at 9 on BBC 1 called Can You Cure My Cancer, showing trials at the Royal Marsden.
Hugs Janette x x
belinda
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Good luck Helen. X
geordiex
Member

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Its awful that you have to be badgering I would ask my onc things but totally trust him with my care he's involved in the trials at the NCCC so he's well up on whats available etc xxxxx

JulieD
Community Champion

Re: Bone mets - please join in

Helen  was just going to suggest you email your Onc so am pleased o see that is your next step (well done tracking down email, it shouldn't have to be this hard!). Just make sure he understands you want to try to get funding for eribulin before it goes so you have another drug left in the armory for later, you could even tell him you know of another patient at that hospital under a different Onc who is being fast tracked to reach cut off date. We all hope you are stable too but you need to know that your Onc has things in hand if you are not. Keep badgering, it's horrible I know but sometimes the only way to get action xx 

2catlady
Member

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Hi,we are sending an email.( been like finding hens teeth ,getting email address for onc lol)
Hopefully he'll see me or talk to me after scan. I'm still praying that I'm stable ,but worried that TMs are going up and in pain. It's trying not to miss the CDF boat. If cap is keeping me stable I'd like to keep that for later and have erubilin now before it's gone for good. Being TN we don't have many options.
Hugs,Helen xxxxx
Bevlaar
Member

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Helen i would grab the chance of getting eribulin if u can...talk to your onc about it and maybe ask for second opinion from Geordies Onc! Being in wales its something i wouldnt be able to have. ..regardless of how effective it is 😠. Good luck lovely lady xxx
Porkie
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Oh Helen, I cant believe your oncologist. My friend has recently started erubulin and after initial couple of doses it is showing real promise. They got the go ahead from the CDF in a couple if days so it doesnt have to take long. Can you not ask for earlier telephone consultation to give you a chance to get the drug if appropriate?  Keep pestering, hugh hugs, keep strong lovely lady.xx

geordiex
Member

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Its worth a try xxx

belinda
Member

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Hi geordie, Helen can you change to geordie's Onc?
XX
rosie53
Member

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Hi Helen, just read my post from this morning, i meant to say CANNOT believe you have no bcn...sorry was rushing to get to work. Aww can you not mither for an earlier scan appt so you have chance with cdf??? What a nightmare!!
Well i have just learnt today that because i have dropped my hrs to just 12 a wk i will not be earning enough to qualify fos SSP if and when needed 😞 how unfair when i have worked all these yrs and still want to work even though i have the dreaded big C, no why don't the government just throw all the cash to the smack heads/drunks etc....sorry rant over just really fed up with it all!!!
Hugs Janette x x
geordiex
Member

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Belinda Helen and I are at the same hospital different oncs annoys me how slow he seems to be compared to mine xxx

geordiex
Member

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my scans the 18th and my app with him was 4th March so he said did I want it earlier so its now 25th feb otherwise I would have been waiting 3 wks after scan,slightly earlier scan than usual but we didnt know if Kadcyla was going ,hope he gets things moving for you quick so you have the opportunity to have Eribulin if wanted xxx

belinda
Member

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Oh Helen that's nearly a fortnight away. What the heck's going on, it shouldn't be too late for Eribulin, it's another life line. Your hospital makes me hopping mad. Where is their sense of duty? Care? We don't have the luxury to be able to wait sometimes. I read your message before the mod changes, what was so dreadful you were moderated? I didn't notice anything inappropriate? Just good grief, I'm lost for words, it's not as though we are discussing Botox and chipped nails. Hang in there lovely. X
Desi-2
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would this stand if the scan shows changes? Or could he do what needs to be done via phone calls to apply for it? Xx
2catlady
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He,said 12th march it's all finished. But there are a few hoops to jump through first.
Asked his secretary if I can see him on 27th at his clinic and told no. My April appointment still stands.
Why on earth if you has SBC everything is made difficult?
Hugs,Helen xxxx
geordiex
Member

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no Helen he has till the middle of March I'm more than sure xx

2catlady
Member

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Afternoon ladies,oops I'm on naughty step as have been moderated. Should have said BCN are angels and not what I said!!!

Have scan on 23rd February ,a cancellation . Think it's going to be too late to get drug on CDF now.

Tracy,so sorry you're not well,it may be body getting used to cap and not an infection. Hope it passes soon.I've never been told to drink more on cap. God we all get different care,it's a minefield !!

Kaye,yippee for tomorrow.
Huge hugs,Helen xxxx
Elily
Member

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Hi Desi For Cape just drink loads (doesn't have to be water). Hope you have got plenty of handcream and foot cream in for the SEs and (in my experience) a load of Rennies for heartburn!

I work full time and am out of the house 12 hours a day and am on Cape, so it doesn't have to be too awful!

Good luck

JulieD
Community Champion

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Woo hoo bertie! Sounds like you are all set up for a great reunion. We'll see you when things have settled a bit and you have some time free. Enjoy!

 

Helen I agree with the others something needs to be sorted, you cannot go on with this pain plus they need to be pressured to get your scan sorted so you stand a chance of getting in before CDF stops.

 

Desi sorry to hear you had a difficult time yesterday with scan. Hope whatever you've picked up passes quickly and blood testscome back ok.

 

I had BCN all the way through my primary but with secondary dx there were no secondary specialist nurses and none of the BCNs wanted to take me on, I asked who my named contact could be -  mmm maybe try the Oncs secretary.....

 

Hope everyone waiting for scans or results get the outcomes they hope for and those on treatments have minimal SE's. Have a good day girls.

 

Desi-2
Member

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Hello ladies don't know if it's a common thing across the country but when I went for my ct yesterday there were mobile units trying to cope with overload of scans. Knew it wouldn't go to plan and sure enough I was given the wrong cannula so couldn't use correct dye! Did manage eventually but all very stressful. Hope you don't have to wait long Helen they're doing them on weekends at my hospital even sat night!
Finally took possession of my first lot of pills last night and then woke this morning feeling real poorly sore throat muscle aches ect. Just new I would catch something when I started them.mwent to see gp though she done bloods immediately, not that I think il be neutropenic that quick but was impressed she done them got to ring later for results but think il just have to grin and bear it.
Hope you get your scan booked today Helen let us know.
What's the average fluid intake on this chemo and does it have to be water?
Love and best wishes to all xxx
Bevlaar
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Hi helen. ..sorry so hear youre still suffering. They really need to get on top of this pain. You shouldntt have to suffer like that. Do you think like me you could have asthma? I didnt think i did until they dx me last month. Apparently they said mine probably started nearly 3 years ago!
Can you get to see your gp?
Hope u get it sorted out xxxxxxx
LemonDrizzle
Member

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Good afternoon everyone
Kaye, bet you're so excited as tomorrow gets even closer - it will be like he's never been away in no time.
Helen, that's so scary. If it happens again go to A&E and they'll organise a scan probably faster than your onc.
Spud, bcn disappeared as soon as original dx changed to sbc - not interested at all.
Hope treatment is going well and se minimal ladies.
LD x
bertie1
Member

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Hi ladies getting very excited now ,picked up banners ,balloons and welcome home cake and we,re going to Heathrow in the morning to pick him up whoop whoop!
Helen hope your pain eases soon and thy hurry up with your scan xx
Bev hope you're feeling ok hope and the chemo is being kind to you.xxx
Janette and all you other ladies hope we're all doing ok and just to say thanks for all your well wishes,I probably won't post for a couple of days so much to do.
Take care all
Kaye xxx
nicky08
Community Champion

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Helen, that sounds so scary, you really are going through it at the moment 😞 I hope you are feeling a bit better today and maybe you should let one of the chemo team know about is? Maybe they can sort you out with an inhaler if needed. Hoping also that the pain is reasonably under control and that something is being done for more effective relief. Fingers crossed the CT gets sorted soon.
Hi to all other mets ladies, wishing you well with treatments and results.
Nicky x

belinda
Member

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How scary for you Helen. 😞 have you been given a CT date yet? I hope you hear soon, if you had turned up at A and E last night with your breathing I bet they would have had to have given you one by now. Is hubby chasing this up today for you, mentioning last night? Or your GP? Be an impatient patient. You are in too much pain. You take care. X
2catlady
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Good morning lovely ladies,hope you are all okay.
Kaye,huge hugs for tomorrow we are all excited for you xxxxxxx

Geordie,I'm sure you had a BCN from mistake lane AKA as Fawlty towers. Absolutely shocking.xxxxxx

Good luck with your pip spud. If you can get a macmillians financial advisor to fill it in that's a great help. Or if your near a Maggies centre they will help you too.



Scary night last night,went to bed early as pains were so bad and all of a sudden couldn't breath,gasping for breath. Hubby gave me his inhaler and that helped. Really scary ,but breathing okay now. Just wish pains would go.

Tracy,how's cap going as you were supposed to start yesterday?

Belinda and bev,hope you are not suffering too much with SEs xxxxx


Huge hugs ,Helen xxxxx
rosie53
Member

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Morning ladies
Kaye i hope you have a wonderful reunion with your son, i'm sure it will be a very emotional but happy time 🙂
Helen i believe that you and some of the other ladies do not have a bcn thats disgraceful, i have 2 that i can call if and when i need them....looks like yet another postcode let down!!
Hi to all hope you are al keeping well.
Hugs Janette x x