Bone mets - please join in

[Chris007]

 Hi  Rosie   I have now had 2 doses of denosumab with no apparent SEs - aches and pains but think they are due to fractured ribs and letrozole. Maybe headache due to stressed - I have just started pilates and all that deep breathing and concentrating really helps me relax. Good luck and take good care of your self. Chris x

[rosiet]

Had 1st dose of denusomab for multiple bone mets (primary 1991!). Debilitating headache 4 days later - previously on pamidronate but changed cos fed up with IV for 3hrs. Anyone else get SEs?

[2catlady]

Hi,Ruth,I was diagnosed in June with primary and secondary in bones within days of each other.I've had no surgery but was put on tamoxifen straight away as I was er positive. I'm on zometa for my bones every three weeks. Doctor said he'll give me another 6 weeks to see if it's working as tumour markers were up but apparently that can happen ! I hate the waiting game,just wish you knew one way or another.
I hope it's working for you ,fingers crossed xxx
all my love ,take care,Helen xx

[Thumbie]

Hi 2Cat Lady, I'm also on tamoxifen after all these years. Last taken for my primary back in 2005, now back on it after letrozole and examestane stopped working. The doc thought it was worth giving tamoxifen another go. Is this similar to you? There is no evidence yet whether it is working or not. Hope it works for you.

All the best Ruth

[2catlady]

Hi,Chris,sorry it wasn't better news. I can't offer any advice on your treatment but I know the wonderful ladies on this site will help. I'm still playing the waiting game to see if tamoxifen is working. Take care xxxxx

[Chris007]

Thanks Nicky will have a look - I know its not chemo but some of the side effects sound pretty like it!

Chris x

[nicky08]

Hi Chris, just to let you know there is a separate thread in the Secondaries 'box' that we've all been put in, about the E/E combo. There's quite a few ladies now on this and it may be useful to read through their experiences. Hope that it does the job for you.
Nicky

[StickiVicki]

Glad there doesn't seem to be too much in the way of side effects.  It is so individual it is difficult to tell how anyone will react.  Hope it goes well for you

[Chris007]

Hi Vicki - just feel I'm back to square one after 3 months of letrozole so now have to go another three months on new treatment then Scan again. There seems to be very mixed views about tumour markers but mine have go up consistently in the last 3 months since diagnosis. I'll let you know how I get on with the everolimus - seems to have a few side effects.

Take care,

Chris x

[StickiVicki]

Chris007 I think I may be in the same boat with bone mets, but trying to get a definate answer is like trying to get blood from a stone.  My hospital doesn't use tumour markers ... 

Hope the new treatment works.  Vicki xxx

[JulieD]

Hi Chris, Sorry it wasn't better news though it could be worse (no concilation I know)so in the scheme of things I hope you are not TOO upset. Can't help from a personal point of view on that combo but do know several people on it and it seems to be working well for them. Hopefully someone will be on soon to tell you about se's etc. Once treatment has started I'm sure you'll adapt and get used to the new normal again. Best wishes xx

[Chris007]

Hi - been to clinic today for PET/CT results which showed "subtle progression " but no new metastases identified. However markers are up again so am going to start examestane and new drug Everolimus. Does anyone have any experience of this? x

[JulieD]

That's great news! xx

Hope others waiting for results can take heart from that and wish you all the very best xx

[belinda]

Great news Tylerrose. x

[elliedog]

Thats great news Tylerrose xxx

[2catlady]

That's fantastic,Tylerrose,great news xxxx

[StickiVicki]

  

Great news, bet you will sleep well!  Vicki xxx

[Julesie]

That's great news Tylerrose, you must be so relieved! Xx

[Tylerrose]

Just to let you know scan results were good lump in breast as shrunk by half and also lymph nodes 3 docetaxel down and 3 to go number 4 tomorrow good nite ladies xxxxx

[StickiVicki]

I really hope that the scan results are good ladies.  Will be thinking of you.  It is nerve wracking betting results at the best of times, but the first time ... scary.

You can ask for a print out of the report if you want to have it to look at later.  Just bear in mind that it isn't really in English but medicalese so it is not necessarily easy to understand.

If you have any questions you may want to ask write them down and take them with you.  Then you can use them as a prompt so have questions for good, bad and indifferent ... but we are all praying for the good.

Vicki xxx 

[Julesie]

Hi Chris and Tylerrose

Just wanted to wish you all the very best for positive scan results.

Hi Helen

Hope you manage to sort out your rib pain and that your wobbly days become fewer and fewer!

[2catlady]

Fingers and toes crossed for you xxxxx

[Tylerrose]

Hi ladies originally posted on this thread I think it was July after first being diagnosed just an up up for my forth tax, Herseptin and pertuzumab thus Thursday and seeing onc tomorrow for first ct scan results hoping that its good news and the drugs are sorting it out luv to all xxxx

[Chris007]

Hi Ladies I have recently been diagnosed with bone mets. I had been on tamoxifen for 3 years so have been changed to letrozole and am having denosumab injections. It is interesting to read the thread about rib pain. Initially I had fractured left rib which was very painful but responded to new meds however then developed pain in right ribs. My joints really crack alot however I am managing cycling and have started pilates. Had my first PET/CT scan done yesterday since diagnosis so fingers crossed I get good news on Thursday. It is so good to read of members who are still going 10 years on. Will be back online Thursday to let you know my results.

[2catlady]

Hi,Vicki,thank you for getting back to me and for all the advise ,yes,that all makes sense now
. I like you wish there were nurses trained to help us ladies as you feel totally abandoned to deal with all the emotional aspects of this god awful disease . Take care,Helen xx

[StickiVicki]

2CatLady (almost made you a 2 car lady there!) this is a prime example of why we need Metastatic Breast Care Nurses, though even a BCN should know about the side effects of tamoxifen!

Zometa can be a bit tough for the first couple of infusions at least.  I was on it for about 5 years, every four weeks ... but after the first iv I went back to work but eventually had to go home and lie down for serveral hours.

First - drink lots of water before and after the iv and make sure that they flush the Zometa with saline before and after the treatment for a few minutes.

Second - Zometa can be given in 15 minutes, which is one of the reasons it is preferred to the older treatments which can take a couple of hours.  However, it does not have to be given in 15 minutes and you can ask for it to be given over about 45 minutes to start off with, which will give your body more time to process it.  Eventually I got down to the 15 minute iv, but it took a while.

Third - use the time to relax and accept the dose into your body.  I like to use visualisation and mentally focus it on the areas where it is most needed.  If you are relaxed when you have treatments I think it can make it easier for your body to accept it.  If you are resistant to the treatment you are getting stressed and mentally trying to block it.  I found a guided meditation that I used to listen to which takes you around a Secret Garden.  If you have an MP3 player have a look on Amazon (I haven't used other download sites so I don't know how they work) where you can put in 'guided meditation mp3' and you can try them for yourself.  As you will see some of them are about 79 pence so they are good value.  It is important that you listen before buying because you need a voice that you can listen to and on Amazon you can listen to a sample of the track.  Some I have stopped listening to as soon as they start to speak because I know that the voice is absolutely NOT going to help me relax!  The choice will be very individual so I am not going to make any recommendation.  I thought relaxation techniques were a bit hippie and New Age, but the first time I tried it I was so relaxed at the end I nearly fell off my chair!

Find out what works for you,  Vicki xxx

[2catlady]

Hi,Belinda,thank you for taking the time to answer me. I do think your right as it's only third zometa and I'd just had it last week.plus I had no rib pains three month ago before Tamoxifen or zometa.
I'm still in shock but trying to take one day at a time.some days are very wobbly but the good days are now outweighing the wobbly days. Your 10 years since diagnosis has given me hope and hopefully more treatments are just around the corner for us all.
You too take care and have a wonderful day,Helen xx

[belinda]

Hi Helen, I wondered if the pain might be more connected to your Zometa infusions? You can often have increased pain at first with both Zometa and Tamoxifen and the ribs are a really common place to have them. Not knocking BCN's but I've found my fellow patients normally have much more knowledge..just because we're the ones having  the treatments, the side effects.

How are you in yourself? I was diagnosed primary and secondary together ten years ago. I was in shock for ages. It still surprises me sometimes in a 'how on earth did this happen' way. But there's been new treatments introduced since my diagnosis and I still have a number of things to try. Take Care. x

[2catlady]

Hi,all,I think I'm on the right thread now.still not quite sure how you get on as I seem to be replying to flinty in 2010! I am interested in any other bone Metz ladies having rib pain while on tamoxifen.I was diagnosed with primary and secondary at same time three months ago. I have been on tamoxifen and zometa infusions every 3 weeks. Since starting the tamoxifen about a week in I got bad pains under front ribs .mentioned to BCN said they hadn't heard of that as side effect.As from yesterday rib pains!which seem to move around under ribs have been excruciating. I'm on MST and oromorph for bone Metz in back but even that wasn't taking the edge off. Hopefully my roaming rib pain will settle down again. But I was just wondering if any other bony ladies have had this side effect . Helen xx

[Janet_BCC]

Dear Ingrid

I am sorry to hear of your diagnosis.  It might help to start a new thread in the Living with Secondary breast cancer section where more people may see it.

You might also be interested in our live chat sessions for people with a diagnosis of secondary breast cancer- these take place on Tuesday evenings.  Here is the link for more information:

http://www.breastcancercare.org.uk/community/chat

You could also ring our helpline to talk things over.  They can offer practical information and emotional support.  Opening hours are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

[Mildred1602]

Dear All

Looking for assistance after diagnosis with a brain & meningeal mets yesterday. OH & I are still reeling & any reading seems to make things worse. I'm going to have whole head radiotherapy with planning on Monday 30th Sept. Please can you point me in direction of ladies with recent experience of brain mets?

Ingrid

[JulieD]

Great minds think alike Val! I was just going to say I use patches, though mine stay on for 3-4 days and are Butrans or Transtec patchesVal, have you started packing yet?

Moonbeam have a good break and when you get home if you are still having pain ask about scans but try not to worry about it whilst away.

[scottishlass]

I don't know if your GP will give you them but I have pain patches that I stick on my back. You leave them on for 12 hours and take them of for 12 hours and must not go in shower or bath with them on as it releases the drug too quickly. Veratis is the name I think or Lidocaine patches. Ask if they are appropriate for you. Do not make you sleepy either. Val

[Guest user]

Thanks eveyone, I did think about going back to the docs but I don't think I want stronger painkillers than these as I won't be awake to enjoy my holiday, the Tramadol ones tend to make me feel a little funny / queasy and very tired - I assumed, possibly wrongly that they all tend to do the same and more likely to have side effects on stronger painkillers?

I think I'll take your advice and ask for a scan or at least an xray when I get back as I'm not used to taking this many painkillers, if it is just normal back pain hopefully the Pilates will sort it out eventually and I can stop the painkillers. If it is something more, well I won't exactly be happy as I only finished all this 6 months ago but at least I'll know and start to get it sorted.

Thanks again

M x

[2catlady]

Hi,moonbeam,sorry to hear about your pain.can you go to your GP and ask about an alternative paid med. tramodol is what my doctor calls an awful pain med and wouldn't prescribe it. After your holiday go and have a talk to your doctor about a scan. But firstly get your pain sorted so you can enjoy your holiday . When I've been to disney parks before my bone Metz in my spine diagnosis I always hired a wheelchair from disney as had arthritis of the spine and found it difficult to walk for long. Please try not to worry I know that's a daft thing to say as we can't help it. But as they say in disney have a magical time,Helen xx

[Katie2002]

Evening everyone - Just thought I would do a quick post before I settle down to The Great British Bake Off! Anyone else addicted?

Anyway I suppose I just want to ask for some advice/experiences re: reconstruction. I had my mx in July 2013 and was told before sec dx that I couldn't have a reconstruction straight away. Now with sec dx I asked my onc and BCN whether it could be a possibility. The complication in a way is an area behind my breast bone that they don't know whether is disease or not but  my onc is erring on the side it is more likely chemo/rads damage. I can go with that - he's decided not to put me on cap for the time being. He says as long a s my heart is ok he sees no reason as  to why I can't have reconstruction. He didn't seem to be able to answer my question - Would the surgery be stirring cells up into cancerous action? Would I be best leaving it alone?' I have a chat with the surgeon on Monday.  What are your experiences? Are reconstructions possible with stable bone mets? If  surgery means that the cancer will return quicker I won't bother.

I  don't mean to sound vain and am very aware that many of you are in pain as well as facing greater challenges and this would be the least of your worries. But while I am feeling ok - I just want to feel 'normal'.God knows I know that feeling won't last for ever! Does that make sense? I am just so very conscious of having to wear high necks, vests, scarves etc.

Anyway I would love to hear your advice.

On a different note spent the day yesterday knitting a good friend a tardis hat for his Christmas only to find once I'd finished I'd written polile box instead of police - d'oh!

Love and hugs to all xxx

[doodlecat]

Teresa, I only knew I had bone mets after MRI. I did have pain in my sternum prior to this but diagnosis of mets was unexpected. I have multi focci spread to sternum, ribs, spine and pelvis. I do not know if my back pain is related or just age. I also have pain in my upper left arm and very restricted movement in that arm but this, I have been advised is unrelated.

Not sure I am being much help. Hopefully someone else will make more sense.

June xx

[belinda]

Hi, moonbeam, it sounds sensible to me, to go back to the doctors after your trip, hope you find something that helps with the pain. And have a lovely break.

Sorry to hear of your partner's hip problems Julie, I hope all is resolved asap. Being a replacement girl myself you both have my best wishes, how scary it's causing these health problems.

Thanks for the book title Katie! Happy reading.

And great news of your results Buffy. Hope working and these results can give you a lovely bc break.

I'm finding it hard to get used to this way of posting, if I reply to the thread I get finty's first post and my memory is not great. It's harder to follow you all.

Take care everyone..x PS I don't belong to facebook so hello to all who used to post here. I'm not a fan of facebook but it's nice to know you're all still popping in here from time to time. 

EDITED...there..to prove my point, I missed out saying Good Luck Val with Vinorelbine. An American lady I know took Vin for many years for her bc mets.

Ramsfan good luck with your scan and results. I find it hard to drink as much as we are supposed to.

Probably still missed out other's I had planned to reply to... smiley cats to everyone..x

[Julesie]

Hi Moonbeam. I don't want to worry you but my original bone met didn't show up on a bone scan. It was detected on a PET/CT scan. There are two types of bone mets, osteolytic and osteoblastic. Mine was the former and sometimes they are hard to spot on a bone scan. Perhaps when you are back from your holiday you could chase up your doctor and try to get a PET/CT done. Hope that you get your pain sorted and have a great time in Florida. J xx

[Guest user]

Hi all, sorry if this is not the best place to ask this but I was hoping you could advise as you all have experiance here (Unfortunately )

I finished my treatment 13th March 2013, over the last few months I have been getting lower back pain when walking and it's now beginning to affect me sitting down at work as well - Has gotten to the stage that the Doc's have given me Tramadol as I can't go for walks with my partnter anymore 😞 I really wanted painkillers that worked because we are going to Florida next week and will be doing alot of walking. The problem is that the Tramadol does not appear to be working,.

As it's only been 6 months since my bone scan the doc's are saying that it's unlikly to be bone mets and that I should do pilates to strenthen my core - they think it's musclular but have done no tests. I've started the Pilates but am concerned that it may be bone mets, am i just worrying about nothing? Can bone mets develope in 6 months?

I'm in Florida for 2 weeks and am thinking if it's still this bad when I get back (or worst) that I should insist on some sort of scan to make sure?

What do you think?

Many thanks for you help

M x

[Ramsfan55]

Val it's strange that you and I seem to be having the same problem with the calcium and tumour markers! I had to go in to see the doctor twice this week over my calcium. My reading had gone up again to 2.72. So I ended up getting another litre of saline and 2 more blood tests. The calcium came down to 2.64 which he was much happier with. I am under orders to drink at least 5 pints a day of fluids which I am having to work really hard at !! However I also ended up having to have another CT scan! I only had one 10 weeks ago., but my TMs are still high so they want to double check that they are not missing anything. Results next week! It's strange that I am actually feeling a lot better at the moment though 😕 anyway I hope that your back feels a lot better Val. Xxx

[Ramsfan55]

Wonderful news Buffy! Let's have more like that please ladies x

[JulieD]

Great news Buffy! Glad you're enjoying being back at work too.

Good luck Pam, hope it goes smoothly.

[Buffy3]

Thanks Pam. xxx

[pam01]

Excellent news , you must be so pleased. Hoping for the same when I have check MRI mon week! Pamx

[Buffy3]

Hi everyone, hope you are all well. I've have some positive news to share. I went for my 3 monthly check up and have stable disease. My consultant was amazed as the letrozole has shrunk the lump back even further. Also back at work full time and loving it. Love to you all. xxx

[JulieD]

That'sprobably  because we were talking about him the other night Val. My BiL has just brought me anotherbook by him but it'll have to wait as I've got a big pile of books waiting to be started, thanks to my recent birthday.

I too am pleased to see you back here Katie, the FB is great but was never meant to take people away from BCC, it's just unfortunate that the changes over the months have made it difficult for folk. I miss the latest posts, I know we still have them for each section but it would be good to have a latest posts for the whole site.

Hope everyone has as good a weekend as possible xx

[scottishlass]

(sorry typed the wrong name but post for you Katie!)

[scottishlass]

Glad you decided to come back. I hope you remembered to "bookmark" this thread Julie as quicker to read. I am into crime fiction at the moment and am hooked on Peter James and particulary the series of Roy Grace. Good to see you here Katie. Hugs, Val

[Katie2002]

Hello everyone - I haven't been on for the new site for a while because I couldn't figure out the new website! Hello to everyone old and new. This is my first attempt at posting on here - so fingers crossed it works! It was you Val on FB yesterday who said I should give it another go. Hope you have a fab time in France.

I don't want to write loads in case it doesn't work! But to my fellow boney bookworms - I have a recommendation. I have just finished 'The White Princess' the Phillipa Gregory sequel to the drama that's just been on the BBC. It was a very good read!

Anyway love and best wishes to all

Katie x