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Bone mets rollercoaster

12 Mar 2014 22:25

Today I saw my oncologist and got the results from my bone scan.  My primary is breast cancer, and there are secondaries in the neck and under each arm.  I already knew that there were some lesions on the spine, courtesy of the CT scan.  The MRI scan was more precise, and broadly confirmed the CT scan, although the main reason for the scan in the first place was to find out whether the cancer was causing damage elsewhere, particularly nerve impingement.  The bone scan has now added to the list of places that the cancer has decided to invade, now it includes one or two ribs.  But also the femur in the left leg appears to be affected and so the oncologist has requested an x-ray of this leg to find out the extent of the weakness.  Apparently if it is seriously weak, I will be in for an operation. I'm back again to see the oncologist on 2 April so that is when I will get to know for sure.

I hadn't expected that the spread would be this much, oh boy, this cancer is really naughty....it is gonna be in for such a hiding!   Which does bring me onto a positive note from my consultation, it appears that the chemotherapy I am having is doing some good as the blood tests are showing improvement.  Whether it will kick in sufficiently to avoid an op I really don't know.  I am also on Xgeva for bone strengthening together with good ol' ADCAL-D.  I am not getting any skeletal pain so it just goes to show again that cancer can cause mayhem without being aware of it.

I am rather hoping someone on this forum has been down this road and can give me the benefit of their personal experience with secondary bone cancer, operations and the like.  Can anyone help please?

Boatgirl (Gill) x

Re: Bone mets rollercoaster

13 Mar 2014 09:14 in response to Boatgirl

Hi GIll

Sorry to hear your news alhtough I guess it was not entirely unexpected.

I only wish I could give you some insight but I have no direct experience of your type of cancer and the spread.

I have high grade lymphoma and have been told that I have low grade in bout 10% of my bone marrow.  Consultant says he thinks it is quite likely this is where the cancer started and that I could have had it for years.  It seems the consensus is that low grad spreads so slowly that something else wil get me first!

You are keeping very postive which is good and I wish you all the best.  Do keep in touch and let us know how things are going.

Big hugs.

Gill

Re: Bone mets rollercoaster

13 Mar 2014 11:29 in response to Boatgirl

Hi Gill,

I wish I could help but this isn't something I've experienced.

Glad to see that you're keeping positive - let's hope the chemo gives it a good kicking!

All the best

Dave x

Re: Bone mets rollercoaster

13 Mar 2014 11:32 in response to Boatgirl

Hi Gill

I am sorry to read your news.I havent been on here for a while-i am lying around with a horriable cold so i throught i would look in.I jumped in at stage 4 incuding the bones.I still remember the nice scanning doctor asking  me in that carefuly nutral way - if i had ever had much problem with artherities.I didnt realise at the time, that he was giving me the only hope that the test might have a  good outcome-my bones were riddled with cancer althrough i was not in pain.

Chemo gave me remission for a while .I was only being scanned evry 6 months.However the bone pain did start which was the first sign that things were not right and i had to go through chemo again.On a lighter note the pain stopped in the first week of treatment and even better treatment seems to have worked.I should also add that i never needed any operations on my bones-personally i would not let surgons lose on your poor bones if they dont hurt.

.I was 37 when i found out about the cancer and i will be 42 in May-so while it is not the eayest of rides ,things have gone a million times better than they could have done.I am glad that your chemo is working and hope that you find the same luck that i have done.

Re: Bone mets rollercoaster

13 Mar 2014 13:00 in response to grumpy

Hi Grumpy

Good to hear from someone who has got out the other side and thank you for your comments which have helped greatly.  Yep, I am just a bit uncool about having my bone cut about, why do I keep visualising the Swedish Chef on the Muppets cutting up a chicken?!!! I won't be letting them loose lightly if it comes to it. Anyway hopefully it won't come to pass, and I'll have the same luck as you.  I now know the chemo is working, how much it is too soon to say but it sounds like it should have a good go at the lesions on the bones too.

Dave and Gill

Thank you so much for replying.  It is really warming to know that there are supportive friends here.  Even though we have been touched by different cancers, we are unified by it too and the support helps me to keep up inner strength no matter what googlies this b* disease throws my way! 

Re: Bone mets rollercoaster

13 Mar 2014 13:11 in response to Boatgirl

Hi Gill

I had to have a sample of bone marrow taken which is not pleasant at all.  It was taken from my hip bone in the lower back.  The doctor had to repeat it as he did not think he had got enouht the first time.  It was very uncomfortable and left me with a sore lower back for a few days.  I hate to think what they will be doing to you although it will almost certainly be a general rather than a local anasethetic .

Keep us up to date and give the cancer a real good kicking.

Big Hug.

Gill

Re: Bone mets rollercoaster

1 Jul 2014 16:42 in response to Boatgirl

Hi Gill. Just found this chat so you are probably a lot further on now, how has it been. I have just had MRI results back which shows bone mets in spine still awaiting CT scans. Had BC 22 years ago then found lymph nodes under arm this year which were removed 19 out of 20 were cancerous, which has led me here, unbelieving after all this time. My Onc says they may give it a shot of rad and put me on xgeva and she seemed quite sure they could control it. How have you got on. Niki

Re: Bone mets rollercoaster

4 Jul 2014 01:40 in response to nikip

Hi Niki

Sorry you have had to land here.

With me it is so far, so good.  I am still having Xgeva and have to expect monthly injections for good.  Xgeva is ok, I might get the occasional bout of extreme tiredness but that is it.  Although the cancer has attached itself to my left femur it did not get right into the bone so they did not have to carry out an operation on my leg.  Going forward, Xgeva will, as I understand it, be a blocker and prevent the cancer from causing pathological weaknesses.  I'm now finished on chemo (last one at the end of May)...at least for the time being, and the last CT scan said I was stable, and no lumps could be seen.  I've got another CT scan in early September, and will have blood tests and CA15-3 analysis (which shows whether cancer cells are active) each time I go for Xgeva.  It is a case of waiting to see whether the cancer is aggressive and is starting to make its way back, or whether all the chemo has done the trick for a while.  Please do let me know how you get on too.

Gill

Re: Bone mets rollercoaster

10 Jul 2014 22:35 in response to Boatgirl

Hi Gill

Have just caught up on your thread. 

Am pleased they did not need to operate on the leg.

Am glad to hear you are done with chemo and hope it was not too bad for you.  I was really lucky that although my chem was quite harsh I coped very well with it and aparte from a few days of tiredness and lack of appetite plus everything tasting horrible for a few days each cycle (reduced to one day by last cyle) I did not suffer any really bad side effects.  I do hope you remain stable for years to come so that they have longer to come up with a cure.

Have finished my chemo and PET scan confirms there is no trace of the cancer at all.  they did not have results of second bone marrow but consultant is almost certain this will have gone as well.  Am already back at work full time which is still tiring but it is great getting back to normal.

Gill

Re: Bone mets rollercoaster

10 Jul 2014 23:17 in response to SleepyCat

Hi Gill

What marvellous news! I am really pleased for you and hopefully you'll never have to go through all this again.

Fingers crossed that I can now have a bit of a rest from cancer, even though the consultant says it will come back...just a matter of when.  Nonetheless I've also taken the decision to get involved again in work, making use of having the luxury of being able to reorganise and work at home which also means I can go and have a kip if it all gets too much.  I'm keeping my health as No 1 priority though. For example I've had a few pains in the back from time to time so I've done some looking around and I will shortly take delivery of an electric desk designed for standing at the computer screen rather than sitting.  My desk at the moment is simulating the "standing up" mode - it looks mighty odd with everything raised on boxes but I must say it has done the business so goodbye aches and pains. I have found it easier than I thought to work from home, and am conscious that the time I used to spend driving and trying to find a parking space is now available for more exciting things.  So I generally feel pretty good.

Also pleased that I reached my fundraising target on RfL and am still collecting sponsorship money.   Next up is my Xgeva jab on Wednesday then I will soon be heading off to Glasgow for the Commonwealth Games with my partner following on a few days later.  I have three cats who are getting completely soppy with me being at home so much, but they'll cope as I must get out and about as well. Just wondering if I dare go back onto an ice-skating rink, would love to do it again!!!

Gill

Re: Bone mets rollercoaster

13 Jul 2014 22:23 in response to Boatgirl

Hi Gill

Hopefully it will be a very long time before the cancer comes back.  I'll say one thing for having cancer.  You certainly get used to needles.  They never bother me that much but I know some people really really hate them.

It is great that you are able to work from home and hope the electric desk works out really well.  In the USA they have treadmills tied in with desks so you wan walk while you work.   Not sure how that would work out - my typing would go completely to pot.

It is good news that you have reached your fundraising target and are still collecting money.  I have been working on an idea for raising money for the unit that treated me and for Cancer Research.  It has taken much  longer than I expected but is coming together.  Being back at work has meant a lot less time .

Hope you have a great time at the Commonwelath Games.  Should be awesome.  I hope the cats get along without you for a few days.  I know our cat Jess got very used to me being around all the time but she is now getting used to me being back at work.  She did go through a phase of ignoring me when I got home but is over that now.

As to the ice sakting I would say go for it (although carefully).

Gill

Bone mets rollercoaster

9 Mar 2015 18:14 in response to Boatgirl

Your cancer sounds so much like mine. Started left breast, lymph, left scapula, left femur head, ribs and T6 vertebra. I am on Denosumab. No talk of operation for me yet. Last CA15-3 marker test showed marker up and recordable hormone levels, I am on Zoladex to stop ovaries as my cancer is ER and PR positive and HER2 negative.

Bone mets rollercoaster

9 Mar 2015 19:11 in response to monkeycat

Hi. I'm still figuring out how to work this chat sight so not sure how to get replies back etc. but I think monkey at is replying to me. I'm Triple Negative BC so my cancer is not hormone fed so they haven't got anything they can give me. Taking Capecitabine now along with Denosamab, I have ct scan tomorrow very concerned as bloods showing liver under some stress and C 153 on 90.

niki

Bone mets rollercoaster

9 Mar 2015 20:55 in response to nikip

Hi again Niki

Like you I’m TNBC.  My CA15-3 results were the opposite to yours in the summer (around 19 & 20).  By August I was seeing physical signs of cancer activity with the secondaries in my neck bubbling up again, despite the low CA 15-3 results.  However, it was the scan in September that finally convinced the hospital that something was happening.  Of course that meant more chemo - paclitaxel.  So what I would say is that the cancer markers might well be a reliable indicator for you, giving you an early heads up.  I hope your CT scan is ok but you'll need to be ready for a less than clean sheet.  There are quite a few different chemo treatments they can try so I’m sure they will have something to offer if it is necessary.  Please do post again to let us know, on this thread is fine.  Gill

Bone mets rollercoaster

9 Mar 2015 21:08 in response to monkeycat

Hi Monkeycat  There are quite a few similarities with my cancer though you have the option of hormone related drugs.  As I mention to Nikip above, the cancer markers are not particularly reliable in my case.  Glad that the cancer didn't get too far into your bones, from my reading about denosumab that should prevent further weakness once you have been on it for more than 3 months.  Anyway you've truly achieved survivor status at 5+ years! By the way I have something else in common as professionally I was in audit. Happy