Bone mets - please join in

[belinda]

Hi Plink and anyone else recently diagnosed. Like Mel I was diagnosed with a matching double whammy, bc and secondaries in my early 40's. Ten years on and I'm still here and I'm feeling well. Hormonal and chemo treatment has given me years of stability at times. You will find lots of support here.
x

[Buffy3]

Hi Plink,
I was diagnosed with the double whammy bc+secondaries back in July 2012. My main issue in terms of pain was my hip which I had rads to. This is mow pain free. I have zoldex, zometa and letrozole. I am 42, like you it has turned my life upside down. I also had chemo which finished in Feb.
Anyway cyberhugs heading your way. You will find the ladies very suppportive and knowlegdable too.
Lots of love
Mel

[Guest user]

Hello all,
I’m a newbie here but have been reading your helpful posts for sometime. I was dx with primary bc in 2006, only to have it return in Aug 2012, after years of getting on with my life! I never imagined it would come back. I’m only 41 and it feels like my world has been turned upside down. I have secondaries mainly in my bones - my spine, pelvis - also some in chest wall and a bit in my lung. I initially had spinal cord compression, which after radiotherapy helped lots, but my L1 vertebrae completely collapsed and caused more cord compression. Luckily I had an operation to have titanium rods,and screws inserted in my spine and since then I have been off all painkillers and able to walk without crutches. Now on letrazole, zometa, herceptin and zoladex.
Your posts have been really comforting for me, sometimes it feels like I’m all alone going through this. Although I feel tons better than last year, I can’t help thinking about what will happen next. It’s hard to stay positive sometimes.
xx

[scottishlass]

Dawn, Yes I have the same problem with the stooping. I catch sight of myself in the mirror and I looked very stooped, round shouldered and bent. My muscles in my back are also painful and I can feel them working overtime. If I leave the house I can leave quite spritely but even if just out for a short time when I return hime it takes great effort to get out of the car and climb the few steps to the front door and I cannot wait ti get indoors and lie horizontally. Is this anything like you Dawn?
I too am uncertain what to do about it. I try to "stand tall" and try to improve my posture when I am indoors. The pain is not like bone pain and to me is more like muscle pain. I do have one muscle missing from my back on one side where I had my LD Flap done all those years ago. I decided to increase my MST by jusy one 10mg tablet in the day. Not at night as I am fine when in bed.
I just long to be able to go out and walk without discomfort. I cannot walk very far at all without a rest and tire easily. The nurse told me it can take 6 weeks to get the chemo out of the system. I keep hoping for better days and to be able to go off on a restful holiday somewhere but cannot see it happening any day soon.
My Dad had a fall in the park Dawn. Then he had a UTI which caused confusion. I had to take him to the A and E on Monday and was there with him for hours while they carried out tests. My back was killing me then. I did wonder if my Dad fancied sitting on the hard chair so that I coud have a lie down on the bed!!!! Then it was the Cardiologist appointment on Thursday with him. He isn't in hospital and is back home in his own place but that is worrying too. He wants to do things for himself but to be honest his judgement is not good and I can see serious problems arising as things will eventually get worse and at the moment I am not able to help out much. I wish I could do more for him but my OH is caring for me as it is.
LOve to all boney ladies reading this. Will look in to see if you reply later Dawn. From Val

[dawnhc]

Val it's lovely to hear from you again but boy do you have more than your fair share of problems! I do hope dad is improving - has he been kept in hospital - or just in and out of A&E? It must be so wearing for you when you are struggling yourself.

I was beginning to feel a bit disappointed with my pump as the pain has significantly worsened over the last 3 weeks. But I went for my refill on Wednesday and chatted to the pain consultant and she agrees that I am probably playing catchup just now - my pain is worsening and we still have not got the dosage right yet - still upping it slowly till we find what is right for me. So the morphine/bupivacaine was increased from 8mg to 10mg and she has programmed me 8 boosts in 24hrs with a 2hr lock out. So that works out at almost 50% increase if I were to need all 8 boosts. With that number of boosts I won't be getting anxious about using up my options over 24hrs. I think things are improving (have fingers crossed while I type LOL)
On Thursday I had an MRI scan - the team that operate that machine are so caring and patient at the Marsden. They really go out of their way to make sure you are comfortable. I caused quite a stir with the pump as they have never had a patient with one and of course it is a large chunk of metal which is a definite no-no in the scanner room. The rep from Medtronic has to be present because the pump will stall and they have to make sure it does restart when you come out of the scanner room. It was very interesting because I haven't heard the alarm sounds it makes from inside me and even with the ear muffs on in the scanner I could hear it - a bit like the tone of an ambulance - but it doesn't keep going! it just sounds every 30mins. As I came out of the room it went of again so I suppose that was the next 30min one. While we waited the rep checked the settings of the pump hadn't been disturbed and played the other alarm sounds for me to hear. I think we waited about 15 mins for it to restart again. But while I was waiting the doctor that reads the scans came and asked me to stay because the 'team' wanted to come and talk to me. Uh-oh that didn't sound too good and I thought I was in for anothe hospital stay. I know I have a fractured vertebrae at T6 and a tumour that has enveloped it and the doctor was concerned that the spinal column has narrowed quite a bit there as well. When the onc came they went over the previous scans and they too showed the narrowing so when compared things hadn't got any worse - so just flagged up to keep an eye on. I think I am running out of eyes! I think there are a few of us at this stage where you get that feeling they are just waiting for something to happen and it feels like a pat on the back - you'll do for a bit longer. I wonder if they have any idea how it feels to be in our shoes.
I have another problem and I wonder if any of you boneys have any experience of this. Since Christmas I have noticed that I am stooping - hard to describe it but I will try. It happens mostly when I carry anything with both hands. For example if I am carrying 2 cups I find my head bends over followed by my back. I look like one of those little old ladies one sees sometimes - bent right over. But I can't straighten and my body will start to lean & twist a bit to the left. I don't have pain when it happens but I do find it puts quite a strain on my muscles - my stomach ones seem to be trying to compensate in some way and tighten up. Some days it happens a lot, others not so bad but it is something that is defiinitely worsening and I don't really know what to do yet. My onc wasn't very helpful so I will probably ask for a senior one next time I am at clinic. If it is being caused by a weakness in the cracked T6 I wonder if something can be done about it.
The trouble with not posting frequently is that mine turn out to be essays! Love to you all - we are a great bunch aren't we 🙂
Dawn
xx

[scottishlass]

Hi Everyone,
AlexD I hope you you enjoyed your concerts. Sounds great to me.
Sorry not logged on here much. The reason? My elderly Dad has been unwell and I have had to take him to hospital a few times as well as attending hospital myself. I plan to have a weekend off ( from hospitals) and try to relax and do nice things aorund the house.
I had 2 units of blood last Friday and noticed an improvement by Tuesday. But I attended the Dental Hospital yesterday and have been put on 4 weeks of antibiotics as I have an infection in my mouth from the exposed bone ( as a result of being on Biphosphonates for so long I think). The Dental Consultant is arranging a dental MRI to check out a nerve in my jaw. I have a numbness in my face that I thought was to do with my nosebleeds from the chemo but the numbness is spreading and I am a bit concerned about it all. I am hoping that the antibiotics will help with that too. I also had my Zolidronate infusion on Thursday and the head nurse came to have a chat to me about my numb face and said it could be a side effect from the chemo as Taxol can affect the nerves in feet and hands so technically it could affect the nerve in my jaw/face. The numbness started just level with my nose/along my cheek. But now it extends to just below my eye right down to my chin....but only on one side. It does not cause any pain thankfully and I cannot feel the numbness unless I touch my skin with my fingers. Nor does it cause any problems with eating or talking! It will take more than that to shut me up! Hugs to you all. Not sure when I will be on here again as not had any spare energy.
Liz I hope you are keeping better. Dawn I hope your new machine is doing the trick. Hugs from Val XX

[Guest user]

Hi everyone,

I am another one who has not posted for a while. Quick update for newbies. Diagnosed Sept 2008 with BC. Diagnosed with bone mets and possible liver met in Nov 2008. I had Tax in 2008/2009. I have been on herceptin and tamoxifen since March 2009. I saw my onc a couple of weeks ago. He told me that I have 'oncogene addicton', its a good addiction and explains why I have had a good response to herceptin for 4.5 years. I just hope it carries on being addicted and does not decide to go to Rehab. I had a bone scan and I am waiting for the results, I have to get my tumour markers done as well. So am in scan anxiety mode at the moment.

Val good to hear you have finished your taxol, it seems like you were on it for a very long time.

I am going to a local Jazz festival over the bank holiday weekend. Last night I went to see Laura Mvula, she is quite exceptional and did a duet with Jamie Cullen. Later today I am going to see Gregory Porter, he has a fablulous Jazz/blues voice, I have also got tickets to see the Noisettes. On Sunday I am going to see Lihanne Lehavas.
Have a good weekend.

Alex D.

[Mildred1602]

Thank you for replying Helen - much appreciated

[vercors]

Hi Mark,
Sorry to hear about your mum's diagnosis. You have come to the right place for advice. I am sure that your head must be spinning trying to make sense of it all.
Have a look at this page on bone met: http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/secondary-metastatic-breast-cancer/bones
and this one on the effect of cancer: http://www.breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer
Hopefully your mum will get some support in her hospital and get doctor's advice.
Do come back here with your questions. We might not be oncologist, but we have the best knowldedge of side effects and tips on how to deal with them.
If your mum feels like it, we would be happy to give her the support that she needs and answer any of her questions.
Take care

[Sam_BCC]

Posted on behalf on new user Mark:-

Hi all, I have just found this site via google as i sit here on nightshift at work.

My Mum has just been diagnosed with bones mets mainly in her spine. This was somewhat worrying but upon finding this site and reading the stories of others it has given me some reliefe and understanding of what my mum will be going through. Is there any information/ sites that you could point me towards that i can share with family and friends to give them a better understanding of what bone mets are and what treatments are available? Mum is awaiting an Mri scan tomorrow with the plan to start radio therapy asap. Her cancer was diagnosed three years ago. Over the past few months though she has been suffering from lower back pain along with a loss of strength in her legs. This past week she was admitted to hospital due to severe constipation. After a ct scan they discovered the bones mets in her lumber spine which explains both of these symtoms. I will try to keep you all updated and will be picking your brains over the next few weeks.

Thanks,

mark

[Guest user]

Hi all,
I have just found this site via google as i sit here on nightshift at work.

My Mum has just been diagnosed with bones mets mainly in her spine. This was somewhat worrying but upon finding this site and reading the stories of others it has given me some reliefe and understanding of what my mum will be going through.
Is there any information/ sites that you could point me towards that i can share with family and friends to give them a better understanding of what bone mets are and what treatments are available?
Mum is awaiting an Mri scan tomorrow with the plan to start radio therapy asap. Her cancer was diagnosed three years ago. Over the past few months though she has been suffering from lower back pain along with a loss of strength in her legs. This past week she was admitted to hospital due to severe constipation. After a ct scan they discovered the bones mets in her lumber spine which explains both of these symtoms.
I will try to keep you all updated and will be picking your brains over the next few weeks.

Thanks,

mark

[helen44]

Hi Ingrid
I have been taking Denosumab since beginning of January 2013, dx Dec 2012. It has virtually no side effects for me, just a few bouts of tiredness. It is certainly strengthening the bones, as shown on my recent scans. Its a quick injection once a month at the hospital. Am on Tamoxifen & Zoladex as well.
Good luck with your treatment.
Helen

[Mildred1602]

Hello Everyone
Just popping in to ask about Fulvestrant (Faslodex) & Denosumab. 4 months after stopping capecitabine (stable after 8 cycles) & switching to Tamoxifen & Zometa I was told on Monday that there's progression in my bones again (organs still all clear). Oncologist wants to try this new hormone / bone combination before restorting to Taxol.
What are your experiences of these drugs?
Ingrid

[Buffy3]

Thats such good news Clare. xxxx

[myfanwy18]

Hello boney ladies,
I don't post often so just a quick explanation. Diagnosed with BC then after MX with bone mets in 2010. Was on tamoxifen and Zometa for a year then scan showed ovary full of cancer in December 2011. Had hysterectomy and six lots of Taxol which ended last September last year. Had last scan result last week after being put on Amiridex. No new bone mets since diagnosis, everything else clear, such a relief. They are keeping me on the same treatment and had result of blood test today, all normal and very good immune system. I know I'm lucky and hope everything stays stable for a long while yet.
Mel, I'm back at work now but I know they weren't happy about me being off during chemo. What can you do though. Hope your lot will see the light and treat you with a bit of respect and understanding.
Love Claire

[Buffy3]

Hi Caron, I hope they find out what is causing your numbness, sounds very uncomfortable and must be difficult not being able to balance. Spoke to soon about the letrozole, been very low today and feel very weepy. Saw a counsellor this morning who said it may be a side effect and lack of oestrogen. Most days am upbeat and fine but today am just fed up and tired. Just hope its doing the job intended...its hard not knowing what your body is up to 😞
Hope everyone else is ok.
Love Mel

[Guest user]

Hi Mel
Hope all goes well with meeting your union rep. Its all you need on top of everything else! Good news that the Letrozole is behaving itself though.
I had some neurophysiology tests done today for my numbness from the waist down. The electrical currents really hurt. I had expected a tickly sensation how wrong was i !!! Anyway a report will be sent to a neurology consultant so just waiting for a date now. In the meantime i have been given a zimmer frame as i cannot balance. Happy days !!
To all luvly ladies - I hope you are all managing your symptoms and enjoying the sunshine.
Caron xx

[Buffy3]

Hi all, its gone quiet on this thread. I am feeling less tired 2 1/2 months post chemo. I have been on letrozole for just over a week, havent noticed any se yet but it is still early days.
I have been sent a formal letter from work about attendance. There is me thinking this should be a return to work meeting, appears my lovely boss is going down the formal route. Am meeting my union rep as I think they may be going against the equality act. I'll wait and see what my union says. Just another thing to worry about 😞
Love to all you lovely ladies

Mel
xx

[nicky08]

Bumping up for Saz.
Also, sorry to hear of mobility problems, hoping that treatment will be helping any of you suffering with this.
Hi to all Boney ladies, hope you are doing well whatever you are having to deal with right now.
Nicky x

[Guest user]

Caron,
I can't sense the rods in normal life, but I can feel them under my skin either side of my spine. If I basj into something (step back against a pillar inthe multi-storey carpark etc), they do hurt and I got a spectacular bruise the other week (after the carpark incident). I have bought a little inflatable pillow so that if I am at a meeting with chairs with hard backs I can sit more comfortably. Maybe I should have agreed to the surgeon going in through the front - he gave me the choice, but I assumed it would be less intrusive with a more direct route.
I do take slow-relief morphine twice a day but don't need anything for any breakthrough pain. It does take a while of a morning for my hips to get going in the morning I get some aches in bed at night, but not too bad. If I stand or walk too long I get an ache at the bottom of my back, but it is definitely getting better. I can measure my progress with my 3-weekly trip to oncology and then having to walk through the hospital to the pharmacy. I definitely managed it alot better today than previously.
At 48, I really didn't expect to be on crutches and having to get in the car for really quite short journeys, but hopefully things will improve.
Sue

[Guest user]

Thank you all for your comments and more importantly for taking the time to support me. Its such a great help!
Susan - I am so pleased you no longer need a brace and can use a treadmill (You're just showing off now) ha ha. Seriously well done! Great news that your tumour has shrunk. There are physios at the hospital but have not been offered their services as yet as i am still having tests to find the cause. I have been told that Radiotherapy is a last resort to be saved for later.
Dawn - You asked where my bone mets are. I asked my onc when diagnosed which bones, he said all of them. Small mets but all over (spine, ribs, pelvis etc). The numbness to my undercarriage was gradual over 2 weeks and my legs and feet over the following 6 weeks. At night when laying straight i get extreme pain in the soles of my feet and calves. Have been given amitriptyline pills by my gp but doesnt seem to make any difference. When i stand pain disappears just numb and heaviness. I hope your pain pump proves successful and that you start physio soon. You have been through so much for a long time yet still have the time and energy to send me an indepth message so thank you Dawn.
Sue - Am so glad you can use your legs now. Your operation must have been awful but so worth it to get your mobility back and your independence. Can you feel the rods in your back? I hope they are not causing too much discomfort. I had bloods done at hospital today ready for Zometa tomorrow and kept losing my balance. I now have a zimmer frame with wheels at front but rubber stops at back. Doesnt seem to like the carpet and not the sort of thing i imagined using when i have only just turned 50 years old, but i do feel safer so thats the main thing (although i will feel embarrassed using it outside). Anyway occupational therapy are going to come to my house some time soon to see what i could have in the shower.
Sarbjit - I was diagnosed with breast cancer in September 2011 and bone mets 2 weeks later. I am on Zometa every 4 weeks and Tamoxifen. Had chemo til March 2012 and mastectomy & 17 lymph nodes removed in April 2012. With regards to bone pain i have a constant ache in lower back and sharp sporadic twinges to ribs and legs which make me jolt but then its gone. Am achey & sore when i get up in morning but it gradually eases with painkillers. Hope this helps. It would have been nice to meet up but i live in Somerset.
Caron xx

[belinda]

Hi, I agree with herbgarden and in answer to your post Sarbjit it's my understanding spinal cord compression only indicates the activity and the extent of mets in that particular area. Last Christmas I had 5 sessions of rads to my spine as I had pains and numbness in the base of my spine and down my right leg. A CT scan showed nothing untoward so I had an MRI which showed I had a met growing very close to my spinal cord. The pain and numbness went after I'd completed the rads. Part of the area I had rads to included my sacrum which is the 2nd time around. I'd had rads to my sacrum approx 6 years ago. This is my 10th year of living with bone mets.
Good Luck to All..x

[Guest user]

Idon't think that the timing of vertebral collapse indicates the stage of disease necessarily but only the extent of disease in the vertebra that has collapsed.......So my secondary disease presented with collapse of T4 which was impinging on but not compromising my spinal cord.......I had emergency radiotherapy which commenced within 3 hours of the MRI! But at that stage I only had disease in T4 with very small amounts in T3 and T5........2 years later i have small amounts in several other vertebrae which are being held stable with capecitabine....and remain essentially asymptomatic...long may it continue!

[Guest user]

Hi Sarbjit
I seem to be on some sort of fast-track process with my bone mets. I started getting back ache last August (2012), had an x-ray in September to see what was going on and last October it was confirmed as bone mets. My vertebrae had looked a little odd on my initial bone scan in November 2011, but they thought it might be just wear and tear. I had the rads to control the pain in my back (and the sympathetic pains in my ribs, hips etc) and it was during that, in the November, that I got compression and needed the surgery. I am very pleased that they reacted so quickly to my compression as I would have been paralysed without the surgery.
The risk of compression does depend on where the tumours are and precisely how much they reduce your bone density. The first sign (I now realise) that I was getting compression was nerve pains down the front of both legs. These should have been a warning of nerve damage, but I wasn't aware that this was a danger signal. If I got that or pins and needles in my feet or hands, I would be straight on the phone to the hospital to make sure that I didn't have another vertebra collapsing.
Sue

[ponsmuir]

Sarb - are you really in West London? I thought I was alone. I will send you a PM.
Susan x
PS I have had breast cancer for 20 years now and bone mets for the last 12 years, slow growing no doubt, painless and undiscovered. They mets were found to be 'very extensive' 4 months ago.
i had good news yesterday - my Oncologist reported that the Letrozole is working and my breast tumour has shrunk. And that's just after 4 months of taking it. She was also surprised to see me walking normally as she had previously only seen me unable to move in a hospital bed or in a wheelchair in January. She was optimistic about alternative therapies if/when Letrozole stops working. I'm not complacent by any means but am trying to seize the moment.

[Guest user]

Dear Dawn
Its really painful to hear of what you are going through. Also Caron your numbness and lmited mobility is really worrying...I hope you get some answers and some committment from the doctors to address your problem .
Sue my thoughts go out to you with the struggle you are having with your back and the cord compression.
does this mean these are different phases of the same disease? I have bone mets extensively...i get pain on an off in my right hip, some discomfort in my ribs and in my lower back on the left. I sometimes get stiff when straighteneing my back when I get up and I do feel uneasy sometimes going to the loo. I get grinding noises and pain in my neck sometimes and sometimes some pain in my skull when I lean my head back for a long time.
I was diagnosed in April 2012. Dear sue pls can you give any advice on how long you have had your bone mets before you got cord compression? Dear Dawn please can you tell me more about how long you have been battling wth bone mets and how you got to this stage of struggling with so much pain? Dear Caron how long have you been suffering with bone mets, when were you diagnosed?
It is so hard fighting this disease and its so useful to know about all your struggles, I hope I can be of some help....if any of you are in west london pls get in touch i would love to meet up
Sarbjit

[Guest user]

Hi Caron
I was in hospital in the autumn with cord compression. With me, the rads actually mad the vertebra weaker and it collapsed completely. I now have titanium rods in my back (from T10 to L2) to replace T12 that was shot to pieces. Before my surgery, I was slowly losing the use of my legs, only getting around by holding on to furniture etc. Since my legs have been fine. I can't walk huge distances or stand for long, but can get around the house. I use crutches for outside and if I want to go any greater distance, I either drive or have a wheel-chair.
Dawn suggested a zimmer-frame. You could try that to see if it helps, but it may make things worse. I was recommended one by the radiologists, before I saw the orthopaedic surgeon. In fact, it was the worst thing for me as bending forwards compresses my spine more. I now use elbow-crutches and they keep me more upright and prevent compression. Round here, you can borrow both (for a small donation) from the red cross, so you could do that and see what helps you the most.
I hope they work out what is causing your loss of feeling (so they can fix it).
Sue

[dawnhc]

Hi Caron,
It sounds like you are going through a really tough phase with this wretched disease. Have you got contact with macmillan nurses and if so have they not suggested things that can help you to get around. When I was going to their once a week days at the centre some time back, a couple of the women had these 3-wheel folding frames that you held on to and had a tray so you could move things around without having to carry them. Do you mind me asking whereabout your bone mets are and if your numbess came on suddenly or if there was a slow build up to it. I feel like you do, that it is a slow downward spiral, and I don't always feel the oncologists pull out all the stops to find out what is wrong and how they can help. They do rush if they suspect spinal cord compression but if it isn't that things seem to come to a standstill. Sometimes I think it is my own fault and I should make more fuss LOL. My damage, at least the damage that is causing problems, is my lumbar spine and particularly where the nerves exit at L2 and a tumour is wrapped around them. That affects my right leg down as far as the knee and I am slowly losing sensation in the skin. Also I had a pain pump fitted under a pocket of skin in my tummy area which contains morphine & a local anaesthetic (bupivacaine) and feeds through a catheter into my spine. I have a small hand held device which I can use to give myself a few extra boosts during the day and when I do that it affects both legs now plus the bits between them (could be too much info) and I know just what you mean about the problems going to the loo. I have to be careful when I use the device to go to the loo before pressing the button! I did have a 'wee' accident once when I forgot. They have said they can stop using the bupivacaine but I feel I need this and as it isn't happening every time I think I can manage. The other thing I struggle with is the weakness in my back now and I find some days I just can't straighten myself - it feels like the muscles in my back just aren't working. I did tell the onc at clinic recently and he did mumble something about writing to my gp and suggesting I should have some physio. I don't know why I didnt think to say why couldn't I be referred to the hospital physios. Surely it makes more sense for them to see me as they are dealing with cancer patients all the time (it is the royal marsden). I am just waiting for the copy of the letter to come to me and then I think I will phone the hospital and ask why I am being referred to outside physios.
I do hope the neurophysiology tests show up what is causing the problem and that something can be done to improve things for you. It must be just so frustrating when you can't get answers and your quality of life is being so badly affected. I'm sorry I have gone on a bit Caron - just that your post struck a chord with me.
Val lovely to hear from you again and everything crossed for you that you can have a long chemo break this time and get your strength back too with that extra 2 units :).
Dawn
xx

[ponsmuir]

Hi Caron,
Each and everyone of us is different, but if I could add my penny worth. Mid December I was admitted through A&E with spinal cord compression. I was bedridden and could not move. It was very painful - I had full control of my bladder and bowels however, and once the steroids/radiotherapy had kicked in, I could walk a few paces if strapped into a body brace stretching from waist to chin.
i was put on Letrozole and Zometa. Now 4 months on, my spine has stabilised, I no longer need a brace and I walk a kilometre a day on my treadmill. My breast tumour is shrinking and I feel a lot better.
Do you have access to a Physio? Can Macmillan perhaps recommend one in your community? that's how it works with me. My physio sees my hospital notes and acts accordingly. Clearly you don't want to overdo things and I understand only too how important it is to feel safe. And when to rest up. Your specialists will know what you are capable of, and hopefully will encourage you to become more mobile when appropriate.
Susan xx

[Guest user]

Hi luvly ladies
Sorry i haven't posted for a while as i have been feeling very down with the numbness i have had from the waist down for the last 8 weeks. It has made me realise how i took mobility for granted. My days are spent mainly on the settee as that is where i feel safe. I have to hold onto furniture to get around the house or i lose my balance. The stairs have to be tackled on all fours as my legs are so numb its like dragging a heavy weight around, and going to the toilet is difficult as i cannot feel when i have finished. Luckily no accidents as yet. CT, MRI and brain scans were okay (other than bone mets already known about) . I now have an appointment for some neurophysiology tests on 30 April. Not sure what to expect on the day and am scared these symptoms may be the start of a downward spiral. Its hard to feel positive when walking and moving about is so difficult and affects everything you do.
At least the scans were okay i keep telling myself but am worried as to what is causing the problem as onc says its not cord compression. Has anyone else here experienced these symptoms?
Thank you all for reading my rant and my best wishes are sent to you all for your treatments and scan results etc.,
Caron x

[lucinda]

Val so pleased to hear from you,and congratulations on completing the taxol marathon.Really good news on your results...Is ypor hair growing back yet? sorry your hb is low again,no wonder you don't feel up to baking!
I have found it hard going with the exestemane/everolimus combo, but when I was my onc phoned me to say the latest scans showed that the treatment was working I feel it has been worth it.I am having a weeks break so my mouth ulcers can heal and the will be starting again next week.Had the first of 5 lots of rads today to hopefully the leg pain may improve soon.

Just conscentrate on building up your energy levels and hope the new treatment plan kicks in.Take care.


Lxx

[Buffy3]

Hi all, my hospital seem to scan me at 3 month intervals. Just been for a check up today, I am too about to start letrozole ( Plus zometa n zoladex) after just completing ec chemo. I have been told to let them know if I notice any unusual aches or pains.
Val, I hope your energy returns soon, no baking 😞 Mine took a few weeks to return. Almost back now, although having all my treatments at hospital has worn me out.
Have a great weekend,
Mel
xxxx

[Lynnq]

Thank you Susan. I see the surgeon next Friday to have my dressings removed, and he'll probably tell me then what the parhology report says. He said that it would be 'interesting' He is a very nice man, vey reluctant to remove the other breast and wanted me to have recon on the R side. Both the Oncologist and the BCN were supportive I know rhat that I will be happier. Just can't wait to have the dressings removed and get back to my 'new normal'

[Guest user]

Glad to hear things are going in the right direction for you Scottish lass and you know your treatment plan. Hopefully the blood will perk you up and help with the tiredness. Looking foward to your chatty posts re charity shop shopping!...today bought a (fake!) cut glass vase for flowers £3! last week a nice wool mix 3/4 length zipped coat for £5.99. Catching you up! Pamx

[scottishlass]

I had an appointment today with my Consultant as I have completed 18 rounds of Taxol.
She is happy with the results and TMs reducing although the CEA has reduced much more than the Ca125s.
Instead of resuming Femara which I stopped while on chemo she has decided to put me back on Tamoxofen which I haven't been on since 1999/2000!
Unfortunately my HB is low yet again so I will be having another 2 units of blood soon, next week if they can fit me in. It is only at 8.5 so no wonder I am feeling knackered. Was planning to bake but am sitting resting instead trying to conserve my energy.
She told me there are many other chemos I could have in the future and could even return to Taxol at a later date. But giving my fingers a chance to recover would be advisable right now. Glad the appointment is over so I know where we go from her. She will see me again in 6 weeks to see if things are improving for me. Fingers crossed I will get some more strength so that I can do normal things again. Thank you for your support while I have been going through all this. Have a great weekend all boney ladies and anyone else who posts on this amaing supportive thread. Hugs from Val

[EllisB]

Hi Lynn
I have scans every 6 months - my onc thinks is a reasonable interval. Why don't you ask them? Best wishes for your treatment.
Chris

[ponsmuir]

Lynn,
I have extensive bone mets and have been on Lectrozole and Zometa, like you, for the past 4 months. Scans taken at the diagnosis of secondaries showed a 1cm shasow on my liver which was indeterminate. Also the possibility of mets in my lungs. My Onc deemed these to small to worry about and is going after the bone mets.
She told me that the Letrozole would 'wash' my body and she wanted to see me again after 3 months with a scan 3 months later. Meanwhile, I've been to A&E as I was concerned my neck was puffy. I think this was the effect of radiation and steroids bit I don't do self diagnosis any more and would rather be safe. Anyway, they gave me a scan which will inform my Consultant when I see her next Monday.
I think a scan after 6 months is entirely reasonable. I understand that Letrozole takes time to work - it seems a potent little pill with powerful side effects E.g bone aches. Making me feel a hundred years old, stiff and sore.
My neurosurgeon told me, in a separate consultation 3 weeks ago, that my spine is stabilising so I feel something is working between the radiotherapy, the steroid treatment, the Zometa and the Lectrozole.
It sounds to me that your Onc. vocalises a little too much! We are ll sensitive to those thoughts that trip out and probably make a lot more of them than we should. The Lectrozole will be doing battle with any 'grains of sand'. Try not to worry - easier said than done.
Susan xx

[Lynnq]

I wonder if anyone can help me. I started on LETROZOLE at the end of Nov 12 and also have Zometa infusions and a calcium/vit D supplement. Just had 3 Zometa infusions so far. in February I had a blood test which showed that there has been a "huge drop" -The oncologists words- in the tumour markers in my blood. Good news!
when I first started my treatments he told me that they would also monitor my progress with scans because the blood tumour thing was a good indication, but not an exact science.
i have noticed ladies on these forums mentioning their 'latest scans'. Or saying that they're awaiting results of thelr latest scans And just wondered how often scans are usually carried out.
i do though wonder at the efficiency of scans. I had an MRI scan on my L breast which showed clear, but when I had my RMx and they sent a sample from my left side (because I had a reduction there). They found cancer in my left breast..........quite a few tumours apparently but all very small (largest 2mm). Like grains of sand spread through your breast is how the surgeon described it.
i then had a CT scan which showed shadows in my peritoneal.....which are PROBABLY cancer and also some lesions/mets in my upper spine after this they did a bone scan.
this showed some lesions in my skull at the back of my head............he then said - "interestingly it didn't show up the mets on your upper spine" I thought that may be some good news at last until he finished off with - "so there could be other mets elsewhere which also haven't shown up"

it is almost six months now since I started treatment. I take comfort from the blood result but wonder if I should ask for another scan.
i had a bilateral Mx last week, they took away the skin saved from the R side and the temporary implant and also did a L Mx............i have decided to not have any recon now.........they have said that they will be interested to see the path reports on those tissues since it will all be post LETROZOLE. Will they be able to compare this path report with the first one.

Am I being little impatient since it is only 6 months?

[nicky08]

Hi Helen, that's great news. Hope you enjoyed the choccies and wine, it seems its the way to celebrate having seen another good results post earlier this week :-). I am sure the Denosumab is working for me as my hip and leg pain, which lead to my latest dx, has all but gone and I did have a flare up of pain in my spine a few days after my first injection, hopefully and indication that it was hitting the spot, or spots! Fingers crossed for my scan next week, yikes.
Nicky x

[vercors]

Helen, great news.
Is your doctor trying to get you to feel guilty by putting a price tag. Know my GP would. I want what is going to help me.

[lizcat]

Helen, that's fab news. So glad you got a holiday and relaxation. I thought the denosumab was about the £350 mark too.

Liz x

[helen44]

Evening everyone. Haven't been online for a few weeks as managed to go to France for Easter week which was lovely - I had no pain whatsoever & had a really relaxing time. Been reading about Denosumab on your posts - I had my 4th injection yesterday & following a CT & ultrasound it appears to be working which is very positive news. Celebrated with some wine & choccies!! My GP says that Denosumab costs £340 per injection.
Hope you are all doing ok with your treatment,
Helen x

[meggy]

Sorry to ask (out of the blue) but where is Finty? Are you OK?
love & Hugs Maggy x

[lizcat]

Vercors - thanks - I am feeling quite a bit better now with the morphine and anti-sick meds. Hope to make the hols again in a couple more months instead. My brain still hasn't caught up with you all but it will over the weekend.

Liz x

[vercors]

Liz, I am sorry you had to cancel your trip. I hope you have managed to deal with the pain.
Rachel, Sorry you had to join us but welcome to the club. You will get a lot of support on this thread.
I am seeing my onc on Tuesday and will ask about subcutaneous trastuzumab (herceptin). I hope it is made available soon.
Big hug to everyone, especially if you are struggling.
xxx

[Rachel_0203300]

Hi Smartie
Thanks for your prompt reply and clear explanation - you have given me some food for thought. My Oncologist says on the facts there is no wrong decision for me - unfortunately that does not make it any easier! I do hope your current treatment plan works for you and that you get the support you need from the medical team.
Rachel x

[Smartie]

Hi Rachel
Sorry to hear about your diagnosis. I didn't have chemo at the primary diagnosis primarily because they believed my prognosis was good and all the indicators were showing a low chance of reoccurrence or metastatic spread. To be honest there was never a clear reason given for the spread but my onc believed it may have already travelled at the primary diagnosis although there was no evidence of it.
Hindsight is a wonderful thing but had I known what was to come I would definitely have opted for chemo after the primary was found and I also would have continued with the Zoladex implants which stopped my ovaries working. I chose to stop them due to the side effects and I think that's when the oestrogen started to feed the cancer again.
its such a difficult decision and chemo is never an easy choice as I have subsequently found out but at the time I was lead by the medical team advising me. Who knows whether initial chemo would have prevented the mets but if I had have gone down that route I would have least have known I had done everything I could at that time.
I wish you the best of luck whichever route you take. Feel free to ask me any more questions if I can be of help.
Smartie x

[Rachel_0203300]

Hi Smartie
I hope you don't mind me asking some specific questions. I have been diagnosed with Grade 3 HER 2- ER+++ IDC of which there is no evidence of spread or lymph node involvement. I am borderline for Chemo and much as I really don't want to have Chemo I am trying to make a rational decision about it. I note from your profile that you were diagnosed with Grade 1/2 with lymph nodes not affected. I think you had a WLE (lumpectomy) and hormone tablets but you were diagnosed with bone mets some years after diagnosis. Do you know if there was evidence of lympho-vascular invasion at diagnosis, please and did the doctors give any explanation as to how the cancer had spread? Also, did you have Chemo on first diagnosis? (It is not mentioned at that stage in your profile)
I am sorry to trouble you with these questions and apologise if I have misinterpreted the information on your profile.
Good luck with your treatment and also to all the other ladies in this bone mets thread. Your contributions are so inspiring and useful for to people like me who have so much to learn. Many thanks for your help.
Rachel

[Guest user]

Hello Ladies
It is interesting to read about Denusomab. I am on Bondronat and don't find it too inconvenient. I was told it was only 30 minutes that I had to wait for food (but have to be upright for an hour) so by the time I have showered and dressed the half hour is pretty much up (I don't move that quickly in the mornings). I sometimes just use the time to watch the news on the tv in bed before getting up. I know that if I am still watching when BBC Breakfast finishes, I am going to be very late starting work.
Has anyone else found themselves losing weight but not feeling slimmer? My onc weighed me last week as he was planning on up'ing me Capectibine and discovered that I had lost about 4 kg in 18 months (and shrunk about 4 cm) so was on pretty much the max dosage anyway. Considering my sedentary life-style and not noticeabliy eating less I was surprised that I was so much lighter. I definitely have more stomach than previously, but that may be due to losing a couple of inches of spine to mets/titanium rods.
I have been struggling emotionally the last couple of weeks. My mum has been truggling to eat and losing weight since Christmas and she has now been told that it is 98% probable that she has pancreatic cancer with spread to her liver. They are stuggling to get a biopsy to confirm this (although have now managed to get a stent in to drain off some bile that is in the wrong place). So far, she doesn't have any treatment plan, except for taking enzyme tablets to hopefully help her digest some of the food she eats. Googling pancreatic cancer with liver mets doesn't make pretty reading, or offer a very long life-expetancy. We went to visit her (and my dad who is 81) this weekend, but it is difficult as they live 5 hours drive away (and I am too tired to share much of that driving with my husband). I left clothes there, so I should be able to go down by train if and when needed.
My mum is stuggling to realise what this means for her. She is still talking of booking a holiday this summer and about attempting to sell their house (to give my dad something more managable to live in).
But I am really not sure I am ready to see someone dying of cancer - I know it is very likely what will happen to me eventually, but I have enjoyed being an ostrich and ignoring the inevitable. This has brought home to me that one day the onc will be telling me that there is not much more they can do except manage symptoms. I guess seeing someone with a diagnosis like that shows me that I am (almost) lucky to have a cancer that has so many treatment options and that can be discovered so quickly.
Sue

[lizcat]

Hi girls,

Will catch up in due course - haven't been on much as am struggling with side effects of new everolimus/exemestane combo and have had to cancel holiday . Just thought I'd say hello and I'll post something when I've caught up with you all.

Liz xx