I have just been diagnosed with bone mets to two areas in my spine also a bit at the top of my femur. In addition there are mets in both lungs and suspicious areas in my liver, but not sure about that yet.
I was first diagnosed in April 2007 and finished initial treatment for stage 3 tumour in November 2007 - chemo then mastectomy then radiotherapy, tumour 4cm and 2 lymph nodes but also triple negative.
I am due to have radiotherapy next week for the bone mets that are giving me quite a lot of pain/discomfort and then will start chemo again on 16th Nov.
I have been asked to consider being part of a trial to determine whether bisphosphonates taken as a tablet work as well as by IV. The choice is between Zoledronate IV or Ibrandronate as a tablet. I will be having a Hickman(?) line put in for the chemo anyway as my veins are shot. Has anyone any advice for me about what to choose/what has worked best?
My GP and the Oncology nurse are upbeat and postive about my chances of living for somne years because of all the treatments that are now available. But my Oncologist was quite pessimistic yesterday. Yes I would see this Christmas maybe not next!!!
To say I am struggling to believe quite what is happening is an understatement. Until the back ache started 4 weeks ago and the chest infection shortly after, I felt fantastic. I am 50 in December. Have a wonderful husband and two great children (16 and 14 years). All my health professionals tell me I have been one of the ‘unlucky’ ones.
Hi Susie
we all know how devastating it is to get a secondaries diagnosis and to be in the same state of shock you must be in right now. This forum was, and still is, invaluable to me since my dx last year. You will get some good advice from ladies in a similar position to yourself. Although I ‘only’ have bone mets I can help a bit with the bisphosphonates question. I was not on the current trial (ZICE?) so didn’t get Zometa (the intravenuous one) so had Pamidronate. I had this at the same time as I had my chemo last year so it made no difference to me in terms of veins etc. These are now shot to pieces due to 6 x FEC chemo but I struggled on with Pamidronate until early this year. I was so fed up with going to hospital for this treatment that I asked to change to tablet form, Ibandronate. I prefer these as they don’t intrude too much on my daily activities other than having to wait at least 30 mins after having them before having anything else to eat or drink. I’m using that time today to check the forums I do get a lot more ‘wind’ than with the IV type and seem to burp all the time, well, not all the time! I am due some scan results soon and hope that they are being as effective as the IV was. When you have IV bisphos you can often feel queasy with the 1st one but if you are having chemo at the same time, to be honest you won’t notice it as the chemo is likely to give bigger sideeffects. Other than that I didn’t have any problems with IV bisphos other than the ‘hunt the vein’. If you go on the trial I don’t think you have the choice as to which type of bisphos you get given so it may not be a decision you will have to take. I wish you well with your treatment and hope that the chemo does it’s job. You may want to ask about being triple negative on here, if you’ve not done so, as there are many ladies on here that are and can help with the different types of chemo that are used. Good Luck and take care - I hope that, like me, once you get started on your treatment you manage to find it easier to deal with your diagnosis.
Nicky x
Hi Susie, I’m so sorry you’re here but this is a very supportive place. You will find some really useful information, questions answered and MUCH support and friendship.
I have the bisphosphonate tablets and luckily unlike Nicky I have no side effects. Do you know which chemo you’re having?
I have bone mets which were diagnosed in 2003. Take Care, Belinda…xx
Thank you for that information. I will post onto the triple negative section as well and see who else out there is like me.
Yes, we are all overwhelmed by emotions within my family and close friends who now know. Words like devastated and heartbroken make it very difficult for me to keep my ‘brave’ face on. I never thought I would be one of the unlucky ones having always kept myself fit, never smoked, maybe too much wine now and again but no different from most other people, and here I am. I am sure I will feel better once the treatment starts and hopefully the radiotherapy and bisphosphonates will get rid of the pain that is a contact reminder of what is going on inside me.
I am tending towards avoiding the trial for the bisphosphonates as the tablets would be easier for my life style once the chemo has finished however I am worried about whther they are as effective as the IV drug. I will discuss this with my Oncologist in more detail before I make my mind up.
Thre was so much going on at the hospital appointment yesterday I can remember the Onc saying that I will have Gemcitabine and something else starting with C that I can’t remember now.
I do know that at least I will not lose my hair this time, maybe just some thinning and as I have loads it may not be too noticeable. We live in a fairly small community where I am quite well known and I am hoping to keep my diagnosis to myself for as long as possible and carry on as normal, keeping my hair will hopefully stop me looking like a ‘cancer’ patient.
Hi again Sue, wondering if the other chemo is Capecitabine? (also known as Xeloda) I know other posters here with various mets have had really good responses to this chemo. I’ve been on it continuously since April 2008 and I’ve had many, many months of complete remission. You don’t lose your hair…mine is actually thicker…and I’ve had no tiredness, nausea at all.
Completely understand you wanting to keep your diagnosis private. Many of my neighbours and even some of my husband’s distant family don’t know I have cancer.
Picking up on your reply to Nicky just to let you know I have some bones that are actually healing with Ibandronate tablets and I have no bone pain at all. Take Care…x.x.x
You are wonderful! Thank you so much for your latest post about the tablets. I do feel reassured about choosing them as I would only be able to carry on with IV after chemo if I kept the central line in and then there are the ongoing risks of infection. So tablets sounds the best way for me.
The drug that I think I am being given is Carboplatin (?) I think. Have you heard of that one? I am pretty certain it isn’t Capecitabine as I had heard of that one before.
I am feeling better this evening after a lovely snooze this afternoon - I hardly slept at all last night!
Hi Sue…yes I have heard of that chemo combo…I hope it works REALLY well for you. I was diagnosed when my hip spontaneously fractured, in 2003. Had a new hip, very succesful op and have been on bisphosphonates ever since. I came crashing down on snowy pavements earlier this year and was absolutely fine…thanks, I’m sure, to my Ibandronate tablets.
x
Hi sorry to hear your news. I found out I had bone mets on the 2nd October this year and I was - still am - absolutely devestated. I was diagnosed with a grade 3 breast cancer Aug 08 and only finished treatment April this year. For it to come back so quickly has been such a shock.
For my bone mets I have been referred to a specialist tumour unit at an Orthopaedic Hospital. Underwent bone biopsy earlier this week with a view to having surgery to my hip shortly. I am on the bone strengthening tablets. I was originally on Arimidex but this has now been changed to Taoxifen as the Arimidex clearly wasn’t working for me. I am being reviewed and rescanned at the end of November. I am hoping and praying that there has been no further progression. I do understand how you feel and I have taken great comfort from reading posts from people like Belinda and Scottishlass who have managed with this cruel disease for many years. Di x
Hi Sue - so sorry that you have to join us here but you will get a lot of support from wonderful women on the forum - I have mets in lymph, bones and liver - all multiples - cant really advise on your treatmenyt - I have zometa by iv and was on taxol but about to start xeolda next week - I found the first dose of bone stuff made me feel awful - like flu - but after that all was ok - was told this often happens with first dose - dont know if its same for tablet. Hope you got some sleep last night - It is such early days since your diagnosis you must still be in shock - i have lived with this for over a year and although i have some bad days - things did get a lot better …take care . Jayne
Hi Sue i got diagnosed with secondaries in lungs and liver 12 weeks ago ,after having bc mastectomy and chemo 16yrs ago ,i like you was in a state of shock ,especially being free of it for 16yrs ,i am halfway through chemo ,i`m on taxotere and herceptin ,i get scanned tomorrow to see whats happening .Am sure you will feel better when you get your treatment plan ,and they start to do sumthin to stop it ,take care barb xx
Hi Susie, I haven’t (yet) got mets but your post struck at the heart of me and I’m sure lots of others. The nightmare that we all fear has for you come true. I think that most on here have acted out in our minds the scenario of what it is like to be dx with mets. The ladies on the site are so supportive and should I be in your position I know I am going to get loads of support from them. I hope you don’t mind me replying as sometimes I feel not having mets bars me from replying on the secondaries site even though I read all their poists. Take care love Eileen
Thank you all you lovely girls, Diane, Jayne, Freda, Eileen, Belinda, Nicky for your supportive comments.
I lurch from being very optimistic to almost total disbelief that this is happening. My husband has been a fantastic support to me from my diagnosis in 2007 and is stepping up to the mark again. Unbelieveably we are also managing the odd joke as well, it does help to lighten the mood.
I go for radiotherapy planning on Tuesday, if they have time they will also give me a dose so fingers crossed as it is supposed to help relieve the pain which is a constant reminder to me of what is going on.
The irony of all this is that I suddenly decided in the Summer that I was feeling the best I had ever felt since all this started and rather than wait until December for my 50th birthday party I would have an ‘I’m better’ party. It was great, over a hundred family and friends, a lovely sunny evening in a fabulous venue with a live rock band. I danced all night!
Thank goodness I did. Everyone is still talking about what a great night it was so we will all have something special to remember in the future.
5 weeks after the party the back ache started, then the chest infection and here we are now!
Never mind it has stopped raining so off out for a walk with hubby up the fell at the back of our house, some lovely views up there and plenty of wind to blow the cobwebs away!
Sorry you have had this bad news, I know the state of mind you are in at the moment, it`s horrible, your head is all over the place.
But things will and do get better, I was diagnosed with lung mets and possible liver mets, in March this year, just 5 months after finishing treatment for primary.
I have had 6 cycles of Capecetabine and it was so easy compared with previous chemos, but after a 3 month break I have a little progression so I start Vinoralbine on Nov 23rd.
Apart from a little cough in the mornings I have no symptoms so I live life to the full, I play golf three times a week , on the other days we walk miles, we are off to Tenerife for a couple of weeks with the family next week.
I think your decision not to tell many people is good. I have only told five people, people I can trust, not even close friends, I find this so much easier to deal with and can carry on a “normal life”
Good luck with your treatment,
Keep in touch,
Take care
Love,
Janx
I have been to work today as normal (was off for half term last week) and managed okay with the pain killers. Off to Preston tomorrow for planning for the radiotherapy and if they have time they will zap me as well, I hope so.
I am greatly encouraged by how well you are all doing and just hope that the drugs coming my way will stop this in its tracks I really have so much to live for.
Hi Susie , i was diagnosed with triple negative and o/r/er positive ibn March 2007, ( obne in each breast) and feel as though I’ve been run over but although it is still my waking thought you get less terrified as in the early days after the initial diagnosis, They belive it was the triple negative that spread as it is more difficult to treat . It is in both lungs, and I haven’t asked for a prognosis, I now have a baby grandson !1st one!) so want to look at the happy times. I try regulary to find other treatment options that the onc. doen’t mention , but then he doesn’t mention anything other than what the health servce offer. I had a portacath fitted as the Hickman line not suitable for me. I lie it better as bloods can be taken from that as well. Good luck with your treatment
Ruffyp
Hi Susie, Have been away for a few days or I would have replied earlier. I think I can answer most of your questions. I am " Scottishlass" that Di mentioned on 31st Oct on this thread.
First of all, I found the radiotherapy to be of great benefit to the bone pain I was experiencing. My ribs were very sore and it helped enormously. Later I had pain in the base of my spine and the radiotherapy helped then too. I didn’t have to go for weeks. Just once or twice did the trick and I had a tatoo ( a small dot) put on where they did the rads.
I have been on 3 types of Bophosphonates. I started with IV Pamidronate, the IV Zolidronate and thirdly Bondronate pills. When I started my chemo tablets a few years ago I opted to come off the pill version as I found it a bit difficult to deal with all the different pills I was taking. I have been on IV Zolidronate until recently and I am about to re-start my Bondronate (pill version). I don’t want to bamboozle you any further so if there is anything you don’t understand just ask. All of the Biphosphonates have worked equally well for me and I have been taking B/Phos for about ten years now! And I am still alive asnd kicking!
As for prognosis…I was told that I had a 50% chance of surviving 2 years…and that was ten years ago!!! I originally had BC when I was 39 and my girls were 7 and 14 and thought I would never see them grow up. They are 27 and 34 now. Twenty years I thought I would never have. One day at a time Susie. Feel free to ask anything that comes up and PM me if you prefer. LOve Val XX PS I am going to celebrate my 60th birthday in February too.
Hi Susie, I have tried a few times to post to you before but my laptop keeps jamming or I submit the post and it completely disappears - very frustrating! But just to say how sorry I am that you are having to come to terms with this diagnosis. I also have bone and lung mets (just waiting for the liver!). I have had bone mets since Jan 2007 and they have been managed well with Bondranat until recently (had rads to hip and T11 at beginning of Oct). I am due to start Capcetabine/Lapatinib soon for the lung mets which were only diagnosed 6 weeks ago.
Coming to terms with the secondary diagnosis is a huge mountain to climb but I am sure when your treatment gets underway you will feel a little more “relaxed” about it (not a good word but can’t think of a better one at the mo). I’ve been using this website for about 3 years and can see that new and better treatments have come out in that short time, so I hope that the next couple of years will also see even better treatments being trialed that hopefully we will be able to take advantage of when we have exhausted all the current ones, its this thought that keeps me positive.
Hope you are having a good day today and that the treatments work well for you.
Good evening ladies and thank you all for your posts that are providing me with so much support and information, thank you all so much.
By the time I had the radiotherapy last Tuesday and the Hickman line fitted on the Wednesday I spent most of Thursday and Friday feeling like I had been hit by a bus! But perked up a bit on Saturday, better on Sunday and back to work this week, trying to carry on as normal as possible.
The whole family has been for the Swine Flu jab this evening, hubby and both children, and then I have to have another one but I am not sure when to have that as chemo starts on Monday - another question for my wonderful BCN Julie. I don’t know what I would do without her.
I am hoping to keep working through my treatment and work are being very good and providing me with a lap top so I can work from home and only go into the office when I have meetings. So, we shall see how it goes. I am hopeful that I won’t lose my hair this time so will not ‘look’ like a cancer patient. I am sure it will be easier to stay positive if I can keep looking normal/nice.
We are going to have some family portraits done this weekend. WE thought about it last year and din’t get round to it but we are now gettiong on with it, this might be my last chance to look half decent - I hope not but just in case. I am going to have one done with my sister as well, I know my Mum & Dad will be thrilled but will probably cry too!! Yjere has been a fair bit of that at times over the last couple of weeks.
Hi Sue
It is so exhausting getting everything sorted so I hope things calm down for you now. I managed to work, last year, on my good days during chemo (FEC) I did lose my hair and wore a wig when out to look ‘normal’ as I also didn’t want to be a cancer ‘victim’ Although I hated my wig by the end of it it did help my self esteem which takes a big battering whatever stage of BC we are at. I paced myself as to what I could do and listened to my body - all of which I am sure you will be doing. I think the portrait idea is lovely, especially as you’ll be looking really good and not too tired. I had to have my passport photo taken about 3 months after finishing chemo and, although my hair grew back quickly, it’s not a picture I’m proud of
Good luck with your treatment, keep us posted and keep asking those questions! I hope you are feeling more positive about things as well, comments from long term mets ladies like Belinda and Val really do help.
Nicky x
I do get a lot more ‘wind’ than with the IV type and seem to burp all the time, well, not all the time! I am due some scan results soon and hope that they are being as effective as the IV was. When you have IV bisphos you can often feel queasy with the 1st one but if you are having chemo at the same time, to be honest you won’t notice it as the chemo is likely to give bigger sideeffects. Other than that I didn’t have any problems with IV bisphos other than the ‘hunt the vein’. If you go on the trial I don’t think you have the choice as to which type of bisphos you get given so it may not be a decision you will have to take. I wish you well with your treatment and hope that the chemo does it’s job. You may want to ask about being triple negative on here, if you’ve not done so, as there are many ladies on here that are and can help with the different types of chemo that are used. Good Luck and take care - I hope that, like me, once you get started on your treatment you manage to find it easier to deal with your diagnosis.