Spine mets, but CA15-3 in normal range?

Hi there

I'm sorry to hear about your wife's diagnosis.

I have secondaries in the spine, ribs, liver and Lung. Like your wife I also have compression fractures on the vertebra.

From what I have found out about the CA markers it appears it varies from person to person. Some people have secondary bc and the markers don't increase but it does with others. Mine are quite high but are coming down slowly.

For the pain I have been given zomorph (morphine capsule) and Baclofen which is for the muscle spasms. I was given this combo as soon as I was admitted to hospital and it started controlling the pain straight away.  I'm still on it now and I am pain free at the moment. I was also given Oramorph for break out pain but I never really used it.  I also take 2 Paracetamol with the zomorph as apparently it compliments the morphine.

Has your wife had any orthopaedic advice in relation to the fracture?

I hope she gets the pain relief sorted soon.

Daisy

X

Thanks for your reply Daisy!

Do you have any side effects from the zomorph? My wife is struggling with nausea and dizziness with Oxycodone, and even Tramadol to a lesser extent. She had co-codamol before that which was OK but not strong enough, and has constipation with all of the above.

We just got the MRI results through today, so no ortho consult yet. I was reading that they can inject cement into the vertebra to strengthen it, but I don't know if this is used in the context of metastatic spread. Did you have anything done for your fractures?

I'm hoping the radiotherapy will get the pain under control and she can come off the pain meds, but we'll have to wait and see.

Also, I'm very sorry to hear about your own situation. It's so horrible to hear the word "incurable". I've spent a lot of time looking for good outcomes to give my wife something to hold on to, and there are a lot out there! Incurable today doesn't mean incurable in 5 years time. Don't give up hope, and live your best life!

Cheers,

BC

Hi I also have bone mets in spine pelvis and had in femur . My vertebrae has collapsed and means I can not stand up straight awaiting consultation with physio / but I am doubtful they can help. I also use zomorrph twice a day for pain and also naproxen. These drugs mean I am free from pain and only side effect is sometimes constipation. I have had chemo and now have phesgo injection every 3 weeks to keep cancer at bay and denusumbab injection every 6 weeks, which is a bone strengthener .

Best of luck to you both and try to remain positive.

Hi BC

No I don't get any side effects with the zomorph. I take 10mg twice a day. At first I was constipated but have added flaxseed to my diet along with weetabix and that has resolved it, sorry if that is too much info! The doctors also said the Baclofen is really good.

Funny you should mention the cement procedure as I have enquired about it. I have 4 compression fractures and I read that this procedure can reduce pain and also strengthen the spine and prevent future fractures. My oncologist has written to the specialist orthopaedics centre and is waiting to hear. I will keep you posted.

Im on hormone therapy Ribociclib, letrozole and zoladex. I have yet to have radiotherapy.

Yes your right there are plenty of great drugs out there and I'm sure there are more to come.

I have also enquired about genetic testing as I am only 37 just incase this gives me any further options.

Good luck with everything and take one day at a time.

Be nice to stay in touch as we sound similar with the vertebra issues.

Daisy

X

Also in the chat section there is a thread called positive breast cancer stories. This is well worth a read, it will give you a lift.

Daisy

X

Thanks Daisy, I'll enquire about zomorph if the RT doesn't get rid of the pain soon. She had a major wobble this morning as in pain, feeling sick, and radio side effects.

The cement procedure seems relatively "easy". From what I've read it's basically the lumbar biopsy she already had, but in reverse, if that makes sense.

I think she'll probably have a similar systemic treatment to you, assuming her BC is still the same (ER/PR+ HER2-). Just need that biopsy back to confirm it, then we can start treatment.

We had the BRCA testing at the outset, as her mum has had BC twice, but it came back negative. She's only 44, so not much older than you. 

Would be great to keep in touch. I have been reading the positive stories, and they are giving me hope!

Cheers,

BC (Andy)

No problem I hope its sorted soon. You will both start to feel better once you have the treatment plan in place, I certainly did.

My first scan in May showed shrinkage of the tumours in my liver. That was just 9 weeks on treatment. That's how good these newer drugs are. My next scan is 26th July.

Yes I am ER+ HER2-, as I said I'm on ribociclib but alot of women on here are on palbocolib which I believe is a very similar drug.

Good luck with the treatment plan. Breast cancer. Org is also a very informative site, they also have a forum.  Alot of women on there have been on the drugs above for 2-3 years and are doing well, either stable disease or its shrinking. Worth a look.

Speak soon

Daisy

Great news that the tumours are shrinking! Someone pointed to this lady's Instagram, and she's been NED (No evidence of disease) a couple of times! https://www.instagram.com/nicknacklou/ Quite a pick-me-up.

Radiation 3/5 today, but I think it takes a couple of weeks after treatment finishes to get the full effect.

Also just found out my Mum has de novo stage 4 lung cancer. I think I'm becoming numb to bad news.

Hi Winship

Do you mind me asking how many have collapsed?  I had 4 and I was struggling to stand straight at first. It's alot better now but still have a slight curve on spine and I have lost 4 inches in height. Physio have given me some stretches which I do every morning and it seems to be helping.

I'm keen to see if orthopaedics can do anything to help.

Daisy

X

Hi lovely to hear from you - I don’t know how many have collapsed they have just said several and damaged had occurred before treatment commenced.

it’s good to hear that physio has helped - I need to chase to see what is happening with that as they have not been in touch. Consultant did say it should start to stabilise . 
I also have lost height - frustrating as can’t reach top cupboards etc !

I also wonder about orthopaedic involvement- but it’s difficult sometimes to get info from hospital with fewer face to face appointments.

Take care