I was diagnosed with Breast cancer May 5th 2010, and then I was told that I had bone mets. I am very scared! I have just started treatment with femdrol tablets and am due to have IV biosphonate: zolodronic acid, I reckon thats what it is called. I don’t know what to expect. My onc says that he hopes the tabs will shrink my tumour so I can have surgery. Help!
Hi cromercrab
So sorry you have had to join us. If you don’t mind me asking, how extensive are your bone mets? Zometa (z acid) is the gold standard of biophospates. It is very easy to tolerate - many people have a flu like reaction to the first infusion, but after that the se’s can be minimal. I get a few aches and pains - although these may well be from the other infusion I have at the same time.
When you say the tabs should shrink your tumour so you can have surgery - I assume you are referring to the original breast tumour not the bone mets? I am not familiar with femdrol - I wonder why you are not having IV chemo - did your onc explain?
I was only dx late 09, but there are many ladies here who have lived a long time with bone mets, with good quality of life - I am sure some of them will be along soon to reassure you. It is scary - but often bone mets can be well controlled by a combo of biophosphates and radiotherapy. My onc said that there are some cancers that just seem to like the bones and don’t spread beyond the bones - I don’t know if this is true, but I certainly want to believe it!
Hi cromercrab
I am sorry to read of your recent secondary diagnosis, I am posting a link to our secondary resource pack which you may find helpful to read along with the ‘Bone secondaries’ publication:
In addition don’t forget about our helpline on 0808 800 6000, weekdays 9-5 and Sat 9-2 for further support and a ‘listening ear’.
Take care
Lucy
Hi cromercrab,
Sorry you’ve found yourself here. It’s very scary to find out you have secondary, especially so soon after the initial diagnose - not another shock wave!!
I had a similar medical history and is still on zolodronic acid. It did a really good job in keeping the bone mets at bay. I had some flu like symptoms: aches and slight fever for the first 2 and then no se after that. Mine took about 15 min, so won’t take too long.
Sorry, know nothing about femdrol tablets either. I had chemo and then tamoxifen, now back on chemo. Hope your onc is right and your tumour WILL shrink.
Take care xx
Hi,
I was diagnosed with bone mets on diagnosis 3 yrs ago, had chemo first, then mx with full anc and rads. Started on zometa Oct 08 and am still on it and will be as long as it works. After the first one I had flu like symptoms but that was the only occasion. I sometimes get achy bones when my next lot is due and it does give me reflux/heartburn. I have it monthly and the only issue I have is with the vein hunt cos mine are soooo rubbish (even before chemo).
The chemo shrank some of my bone mets as well as the main tumours in the breast and since then they have been more or less stable. Had a bone scan 2 weeks ago and haven’t heard anything so am assuming it’s all basically the same !!! We’ll see at my check-up on 17th. My mets are in spine and ribs.
Can’t help re the femdrol - sorry.
Other ladies on here have lived with bone mets for years and years and I’m sure they’ll be along soon. They’ve given me loads of hope !
Hi Cromer Crab
Sorry to hear your devastating news. I too am new to this forum and have found the help from ladies on here to be invaluable and I have made a few cyber friends, but more importantly been given lots of hope and inspirational stories. So you have come to the right place.
I don’t know the treatment femdrol - Is it a hormone treatment or a chemo tablet? I am on Femara (Letrozole) it sounds similar. Good Luck with the Zometa, I am waiting to start that too, just need to visit the dentist first. (I hope you’ve been advised to see a dentist first! as you’re not advised to have certain dental work whilst taking this treatment, so it has to be done first) Can’t help with experiences of Zometa, but from what I’ve read most people with bone mets seem to be taking that one.
Take care and keep us posted with how you’re getting on
Nicky xx
Hello, I too am sorry to hear your news. I was diagnosed with bone mets from the very beginning, seven years ago. I’ve stayed well since diagnosis and although on constant treatment I’ve now had many years of inactive cancer. I had 5 years of hormonal treatments and I’m now on my first chemo, Xeloda, which has been very tolerable and you keep your hair too.
Good Luck with your treatment…xx
Hi cromercrab,
I just want to echo what a lot of the others have said. I know how much of a shock and how scary this all is, but this site and the women on it are agreat source of comfort, knowledge and inspiration, so do keep popping in.
I was dx with secondary bones this March, I’m on Femera (sorry not heard of femdrol so can’t help there) have had a couple of sessions of rads and had my first zometa (zol acid) a couple of weeks ago.It took about 15 minutes and I’ve not had any side effects besides being slightly more achy for a few days.
It is hard to come to terms with and you will have bad tearful days but you can live with this and live well for many years so please try to hold on to the positives. My thoughts are with you at this difficult time.
Julie x
Thanks for all your positive comments. I am a bit calmer now. I took advice on dental work and am having my treatment before my IV stuff, so that was very helpful advice. I am hoping for the best, and my nurse says I should see a difference in my lump after a fortnight of treatment… I reckon it might take a bit longer than that. I am unsure what to do about work though. Do any of you ladies work? I am signed off until end of July.
Cromercrab I’m not really sure what your treatment plan is - will you be having surgery and IV chemo for the primary bc? You mention zometa for your bone mets - will you also be having radiotherapy? Are your bone mets debilitating? It’s hard to comment about work prospects without knowing a little more. I don’t work myself - and wouldn’t have been able to through chemo, but I find the zometa very easy to tolerate and could work as long as it wasn’t a very physically demanding job. Apart from the physical side, you also need time to deal emotionally with your dx, and you may not feel up to going back to work very soon.
Hi finty, I am taking hormone tablets to shrink the tumour and then the plan is surgery. Zometa to hold the secondary in check I guess. No chemo, since onc doesn’t think my lump will respond too well to it, it’s a last resort. The nurse has just been on the phone and I start treatment on July 2nd, cos I am having to have dental work done before hand. It should work out quite well because I have a holiday booked in Norfolk last week on July. I am having the IV monthly.No radiotherapy has been mentioned yet, and I have had little pain so far.
I’m a little surprised your onc hasn’t recommended an IV chemo after surgery to deal with any other stray cancer cells that might be circulating, and to reduce the risk of recurrence of the original lump. I am in the same position - dx with a bone met at the same time as original dx, but have had 6 rounds of chemo post surgery and currently having 7 weeks of rads to the breast and bone met. Tax is I think the standard chemo for most secondaries. Has your onc explained why you are not following the standard pattern? I’m sorry - I don’t mean to imply that your plan is wrong - it is just that it isn’t the usual plan many of us are familiar with.
One reason I question it is that I felt I had to fight a little bit to get my oncs to treat my primary breast cancer aggressively, as I feel there is a tendency once you have secondaries to just manage the condition. As I have only one small met, I believe there is a chance of keeping it contained, and I want to make sure I have the best chance of preventing a primary recurrence.
Hormone treatment can be really effective at controlling bone mets. My Onc is very pro-active and I think his approach has helped me stay well for so long. He always thought chemo could be put on the back burner until we’d seen how I responded to hormonal treatment. As I mentioned above I had 5 good years with hormonals controlling my bone mets…I had no active cancer at all. Arimidex alone gave me terrifically low markers, well within the range anyone without cancer would have, for nearly 3 years. When my markers started to rise I was changed to another hormonal. So seven years on and I’m still on my first ever chemo.
I have the CA15-3 markers taken every 3 weeks.
If anyone wants any info on these tests, link is here,
labtestsonline.org.uk/understanding/analytes/ca15_3/glance.html
I was diagnosed with bone mets from the very beginning and I understand in cases like myself it’s quite the norm to go with hormonals before resorting to chemo.
Hi
I agree with Belinda (again, as we have similar conditions and treatment!) that hormonals are often the preferred treatment for bone mets plus bone strengtheners. I was dx over 2 years ago (boy, did I think I wouldn’t be here to say that in 2008!) and initially we discussed hormonals only, however as I had a primary recurrence we decided (onc and OH and me) to hit it first with chemo and then go onto hormonals, but this was a decision largely down to OH and I, my onc was happy with whichever we chose. One of the key factors is knowing how hormone receptive you are and this includes progesterone and oestrogen as if you are highly receptive for both you get the maximum benefit from hormonals (or so I have read and understood) Also, from my understanding, it seems that bone mets on their own are not a rapidly spreading secondary and can therefore be monitored as closely as with other mets but without the urgency to change treatments straight away. This may not be accurate it’s just what I was told and have noticed on these forums.
I hope you respond well to your treatment and if you ahve any other questions do come back and get support and advice.
Nicky
The comment from my onc was that my tumour was dripping with oestrogen. He thinks that chemo will be a last resort. I have been on hormone tabs for nearly a week and think I see a slight change,but not really sure.
That sounds really promising - fingers crossed that it is responding well.
No surgery for me! Unsure how I feel about that, onc was concerned about compromising my chest wall. The offending breast is now a lot smaller 6 weeks on, so I reckon things might be going ok. My IV wasn’t too bad either. Going back to Onc first week in August for the verdict. I suppose the main purpose of surgery is to try to stop secs.
x