Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Hi- Newly diagnosed

Jo6
Posted by

Hi,

Im newly diagnosed with breast cancer that has spread to the bones. I was on Letrozole, Palbociclib, Zoladex and Denosumab injections. Just had 3 month scan and it has still spread within the bones. I'm 37 and my life has completely changed. I'm hoping they can try something else! My mum passed away from secondary breast cancer and my sister also went through treatment. It has helped reading some of your posts. The Lego comment made me smile! Being made of Lego would be so much easier!

Jo x
Nickyd1
Posted by

Hi Jo 

welcome to the group! It is good to read isn’t it. My hair sometimes looks like Lego hair :-) 

Thats a lot to cope with in your family, have you had genetic testing? 

I hope that they can swap your meds and stop the march of the cancer. What have the team said? 

I’m on similar meds but riboclib rather than palbociclib, first round so I don’t know for a few more weeks whether it is working. I’m feeling like I’m about to get a cold but it never appears, think it’s my bloods dropping .

Nicky xxx

Jo6
Posted by

Hi Nicky,

Thanks for your message. Genetic testing came back yesterday and it has shown no reason for our cancers. Nothing has been identified on the 8 genes they currently test for although it doesn't rule out that there could be other genes that have not been identified yet. I'm meeting with oncologist on Thursday to see what they suggest so fingers crossed I can try something else!

Hopefully you feel better and your bloods are ok!

Jo x

Jo x
Ruby2016
Posted by

Hi Jo,

I just wanted to say hello and welcome. I am on exactly the same treatment plan as you, had my 2nd cycle last Monday, the 6th.

I am truly sorry to hear the cancer has spread further - you’ve obviously had an extremely rough and personal time with Secondary Breast Cancer and I sincerely hope that they can offer you other meds.

There is so much knowledge and positivity in this Group and I am glad one of the posts made you smile .

Love and best wishes to you xxxxxxxxx

Jo6
Posted by

Hi

Thank you. I hope your treatment plan goes well. Xx

I know there are many drugs out there so fingers crossed we can put a halt on these charmers! I will know more tomorrow.

The group is a great support as it's very difficult for family and friends to fully understand no matter how much they try.

Jo x
Ruby2016
Posted by

Hi Jo,

I sincerely wish you well and I really hope tomorrow’s appointment goes well for you. 

xxxxx

Jo6
Posted by

Hi,

Just had my 3 month scan results and the cancer has halted on my meds which is great news so back on Palcociclib etc . Gp had told me it had spread further when in actual fact it hadn't- wee mix up with what scans they were comparing! Just sent me onto panic mode for two days until I met the oncologist! So I'll take the good news and hold on to it and await my next 3 month scan.

Jo x
DiAne550
Posted by

I am so pleased for you Jo. Sorry you had two days of panic but what brilliant news.

Keep Thinking Positively. 

DiAne xxx

Ruby2016
Posted by

Hi Jo,

Really pleased to hear this! I’m delighted for you and you hold onto that good news .

xxxxxx

Jo6
Posted by

Thank you to you both. Back to being sleepy tired but was pleased to see the box of drugs again! 

Jo x
IamLyn
Posted by

Just thought I would say hello - I was diagnosed in April 2019 with Secondaries - first time time diagnosis following a routine mammogram at 50 - Happy Birthday to me.

I was in tail spin for the first three months - I was started on Ribociclib, Letresole and Zodalex injections.  The Ribo did not agree with my bloods and it was halted after the first cycle. I was then only on Letresole for 7 weeks until my bloods came back to normal.  My ONC switched me to Pablo on the medium dose - after one cycle my bloods held so she put me on the highest dose 125mg.  I am now on my 7th cycle and thankfully my bloods are holding.

Latest bone scan has had good results and I have just had a further 3 month PET scan (yesterday) and am waiting the results of that.

I have good days mostly and some difficult days where I get fed up with the endless blood tests, appointments and scans and do get a bit tired and a bit achy. Other than that I feel no different.  I went to the Caribbean on holiday in November and I can say the winter sun was marvellous - not aching at all.

I do get scanxiety it is perfectly normal and I am lucky that my friends, family and fantastic partner are very supportive.  There is also this group who actually really know how you feel and are wonderfully supportive.

Please have a look at the thread  started some time ago - Positive Breast Cancer Stories it is posted in this room and take the good news stories away from that.

I wish you all well with your treatment and long may it continue to work well for all of us

xxx

DiAne550
Posted by

Thanks for that. X

Just a quick question. Which hospital gave you a PET scan? My oncologist told “we don’t do it for breast cancers”. I had particularly asked for one too. 

Thanks again,

Ruby2016
Posted by

Hello to you too . Thank you for such a lovely post.  It’s great to hear you went on holiday - every January I get obsessed with going away and I am a bit addicted to ‘A Place In the Sun’ and other similar progs at the mo! 

You sound really inspiring and thank you for your good wishes .

My very best wishes to you too xxxxx

IamLyn
Posted by

Hi I am under Essex trust Hospitals.  I can't answer your question it does seem a bit odd. How do they know you have mets if you have not had a scan.

I will say I questioned my ONC for a while and had to push for a bone scan which I have just had.  I just wanted to ensure that the osteoporosis I have was not confused with mets.

I have a PET scan every 3 months for the moment, although I am led to understand this will soon move to 6 monthly - not sure how I feel about that to be honest.

I think you should ask you ONC WHY - if you have mets then at least you know where they are and they should know what they are dealing with for the appropriate treatment.  I am not experienced enough to give you a clear answer but perhaps put another post on her titled 'PET Scan refused'.  Hopefully someone with more experience and knowledge can help put your mind at rest.

x

IamLyn
Posted by

Hi

Thank you - to be frank reading other posts on here has kept me positive and as we cannot change our situation, I don't want this to define me - I want to live for today.  I only plan about 6months ahead and you need things to look forward to.

I like a place in the sun but don't get to watch too often as I am still working full time - need to pay for those holidays :-).

There is a group being set up near me (10 miles) very soon for ladies/gents with secondaries as there was no real meeting points for us.  This is a chance for us to get together share stories, natter laugh and so on for a couple of hours each month.  The first one is next week, I think it is great as so often we can feel isolated, and this is a good chance to meet people, make friends and generally have a laugh with each other.

You are already inspiring Ruby2016 by posting and sharing you experience which will help others.

I wish you well with your treatment. Keep talking its good for the soul, It does not have to be about our diagnosis, sometime you just want to leave that behind and just talk about any kind of rubbish.

Best wishes xxxx