Thank you for responding so soon. I have read some of the threads and it was inspiring but what I want now is for someone to tell me I am definitely going to die of old age. I know that’s irrational and no one can say that but how do you go on knowing you’ve got something that is more than likely going to kill you. I keep thinking of my kids and how old they’ll be if I die in 5 years or 10 years, whether I’ll live to see them married or finish uni, (they’re 16 and 23). I know it will get better and I’ll come to terms with it eventually but right now I can’t see the point in anything.
The treatment plan is for 3 weekly cycles of zometa for 6 or 12 months (not sure what it depends on) and 5 cycles of taxotere which I had all ready started on for the original tumour. After that the onc seems to be saying just wait and see.
I’m on zometa too - I think the 6 or 12 months will depend on how soon your bone mets stabilise. The zometa is a high dose given IV and is usually used after initial dx, but when the mets stabilise most of us are put onto oral bisphosphates - I’ll be changing soon.
I think the answer to how do we cope is different for everyone - and not everyone does cope with it. But in time the initial panic will recede, and hopefully your treatment will go well, and you will gradually adjust to the new normal. My own personal coping strategy is to do all I can to improve my chances, so I have radically changed my diet, take as much exercise as I can manage, and tried to rid my life of any unnecessary chemicals. I don’t know whether it will help or not, but it helps me to feel more positive. I will be going on a course soon to learn to meditate and do visualisation therapy. I keep busy and socialise a lot more. I have the odd wobbly day, but so far I am finding it manageable - but I don’t know how I will cope if/when my cancer progresses.
Some things can be very upsetting - I am going to a friend’s son’s wedding soon, and I know I will spend the whole time wondering if I will get to see my children’s weddings. But generally I have just taken a decision to not think too much about how things might have been, and focus on making the best of what is ahead. I don’t think it is possible to forget about it - it’s always there in the back or the front of my mind, but for now I’m not as frightened as I was.
I now know that my mets are multiple in the skull, thoracic and lumber spine, pelvis, ribs and iliac bone. I found out the extent of the spread of the cancer from a letter sent from the hospital to my GP which I was copied in. I was starting to feel better about the whole thing but now I’m down again.
Crawfo I’m so sorry you are feeling so down, but you’re not alone - although my mets are small there are ladies here with extensive mets that are doing well. My met also showed significant reduction through 3 cycles of tax (and we blasted it with rads for good measure) so I hope 5 cycles of tax will do an equally good job for you too. There is one poster here (sorry I forget which one - maybe Dawn?) who had skull mets that have healed and not returned.
Hi finty - you have a good memory :). Crawfo - I was dx with breast cancer in 1990, then in 2002 with bone mets and they were extensive in my skull (I was amazed when I saw the scans to see loads of perfectly round black holes all over my skull), in all areas of my spine & sacro-iliac, ribs, collarbone, hips & pelvis. After 3 months they rescanned and yes the ones in my skull were no longer visible on bone scans! most of the other areas instead of appearing black were grey and shadowy. I started of on pamidronate for some 3 years then was switched to oral bisphosphonates but I didnt get on with them so went back on pamidronate. Then 6mths ago I was changed to zometa. This was because I had been getting increasing pain and the onc thought zometa was stronger. It now appears that the pain I am in is not due to the bone mets, but to a tumour growing outside my lower spine for which I had 5 sessions of rads. I have now had another MRI and a CT scan to check if I have anything else going on so fingers crossed that I still have ‘only bone mets’ (and the tumour) I will get the results on Tuesday.
Finty I know what you mean about the wedding and wondering if you would get to see your own children get married. I went through all that as mine were 16 & 18 when I was diagnosed. I have been so thrilled with each ‘special’ that happened in my life - like silver wedding then ruby wedding, getting my state pension LOL, seeing my daughter married and having our very first grandchild. Life can be good, but specially poignant for us.
Hi Ladies,
Excuse me for butting in!
Just when l see Dawn’s posts l just want to tell her how inspirational l think she is.
Love and Hugs to Dawn and all the ladies
Sandra xxx
Hi everyone!
I have just been to hospital and had MRI and then a full bone scan, yesterday was a CT! Have just started FEC cos hormones didnt work. Feeling ok, but trying not to think what might happen if things have spread. However, I suppose it’s still early days. I also think about whether I will be around for that date or another. It’s only natural I suppose.
I am off on holiday on Monday, and see onc on sept 30th.I am going to try to forget all about it until then. So far I have been ok after chemo,one day at a time. Thanks to all you guys for the support.
x sarah
Hi Sarah, Glad you were ok with your scans, and I hope the FEC works better for you than the hormones, I know we are all differant and react to the meds given to us differantly. Lets hope that this works this time.
I hope you have a lovely time on holl, going anywhere nice??. I know its hard to not think about BC it seems to creep up on you, so just try to relax and enjoy the time away.
I am off to Cromer for a bit of sea and general relaxation! I will get my results when I see onc 30th sept. Also will see wig lady just before then. Its ok cos I can ignore things until then. I can’t believe I feel as well at the minute as I do. Keep thinking something very nasty is around the corner… I reckon that the white cell injections they are giving me may have helped plus a very big portion of good luck.
I may well be on line next week as OH takes laptop and dongle so we are always connected.
I shall now begin to pack, we are off on Monday after my last injection! HURRAH!
x sarah
I guess it’s early days for me and hopefully things will get better. I will try to take each day as it comes and think of each day as a bonus. Feeling shitty from the chemo probably isn’t helping my mood.
It’s easy to get downhearted but it’s good to hear that it is possible to have multiple mets and still be alive many years later. The doctors and nurses are being very vague with me and you wonder why and if it means anything or if that’s just the way they have to be because they don’t know yet how I am going to respond to treatment. On the plus side I suppose if there was no hope of significantly increasing my life span they wouldn’t be offering any treatment so I should look on that as a good sign.
One practical thing I’d like to pick your brain’s about, if anyone of you lovely ladies has any insight, is how you deal with telling friends. So far I’ve only told one friend, someone who was very supportive throughout the initial diagnosis, but I haven’t heard from her since. I’m not angry, I understand it’s difficult to deal with but it’s hurtful. So what do you say when people ask how you are. Do you tell them honestly about bone mets and what it means or do you lie and say you’re fine.
I’d be interested to hear how other people have dealt with the ‘telling people’ thing too. I was very open about my primary diagnosis (and also when I subsequently got diagnosed with primary endometrial cancer), but since being diagnosed with bone mets about 10 months ago apart from my family I have only told a dozen or so people (mostly friends plus a couple of my managers at work) about my secondaries diagnosis. I think this stems from my fear of people treating me differently, defining me by my state of health, or being nice to me just because they feel sorry for me, but at the same time I feel that I can only half relate to the people who don’t know, as they are unaware of something which is having such a major impact on my life, emotionally if not yet physically. This makes me feel quite isolated a lot of the time, especially as I live alone and don’t see the friends who know about my mets that regularly. And when I’ve met new people I’ve very much found myself keeping my distance as I think it’s not worth trying to make friends with them now anyway, because I’ll have to choose between not telling them about the mets or telling them and potentially scaring them off.
I’m not sure how much of this is a limitation that I’m imposing on myself. Has anyone been more open with people about their secondaries and found that it wasn’t a problem?
Tournesol I’ve been pretty open about my dx, but it was a little different for me because my bone mets were found at dx, so it was part of the initial “announcement”. Even though most of my friends know I have secondaries, I’m not sure most of them know what it means in terms of my prognosis - I probably wouldn’t have either. My standard line for all but my closest friends is I’m fine for now, and I’m on maintenance treatment until something happens, and at some stage I expect to be having chemo again. I see a large group of friends every day as we dog walk together - it hasn’t affected our friendships in any way, although I suspect there are subjects we don’t discuss, but I’m never aware of any awkwardness. I drop the odd hint every now and then to let them know I am not in denial and realise how serious it is, but that I’m ok and living very well for now. I hope that helps.
I should also add that I have been amazed and delighted at how great my friends have been - in the past I have not been a very open person with emotions, and haven’t tended to discuss deeply personal issues with them, but have found the concern of others deeply touching and has improved my sense of well being enormously. It is one of several areas of my life that has indeed benefited from cancer.
I am a happy bunny :). Had a clinic appointment today after the MRI & CT Scans which I had asked for. I started to think that if the tumour growing outside my lower spine had been growing without my knowing then there could be others. As it was 4 years since the last CT I had begun to feel that I wanted to know. Am so relieved that there are no other hidden nasties. Maybe the increasing pain is down to the rads to the tumour and the fact that it has wrapped itself around the nerves exiting at L2. The change to gabapentin does seem to be helping a bit so I will be very happy to increase the dose if the MacDoc tells me to.
Dawn that is marvellous news! What a huge relief for you - and well done for having the courage to ask for the scans, that can’t have been an easy decision. Is there any surgical option for the tumour on your spine?
finty x
You are right it wasn’t an easy decision, but my oncologist has mentioned several times about going back onto some chemo such as taxol. He was suggesting it as a means of relieving the pain and I didn’t want it for that. I got a bit worried by saying no all the time if there was something else going on and I would regret a bit further down the line having said no. That was really what decided me to ask for the CT scan.
I don’t think there is any surgical option for it. I think it would be dodgy with it wrapped around the nerves exiting L2. Must admit though I haven’t asked.
Hi Dawn, I am glad that the Gabapentin is working for you. It has made such a huge difference to my own pain control. Don’t hesitate about increasing it but do it gradually. Glad the scans did not throw up anything nasty. Keep well. Love Val XX
So very pleased you had good scan results…what a relief!!! Great that the Gabapentin is relieving your pain,hoping you don’t have to increase it, but good to know you have the option!
So pleased your scan results were good, such a relief for you. Now lets hope the pain eases with a larger dose, at least now you are not thinking the pain could be something sinister the scans can put your mind at rest.
I will get the results on Tuesday.