Spine mets, but CA15-3 in normal range?

Just reading through the new posts. This is brilliant news  x

That's great news! So happy for you Daisy! Long may the good news continue.

Good news! So pleased to hear about your orthopaedic appointment, I’ve got a physiotherapist appointment on Tuesday face to face, so hoping can get some progress from that to help my spine.

Take care x

Good luck for Tuesday, I hope they can help you.

X

Hi,

I was diagnosed with SBC in 2016 & now have mets in C4,T2,T3,T12,L3 & recently C2 which I’m waiting for radiotherapy on the C2.

I’m currently on 50mg Pregablin in a morning with 2 x Panadol Actifast ( don’t know why but they seem to be better than other Paracetamol) I also have 2 x Panadol Actifast at lunchtime & 2 x 50mg Pregablin on an evening this seems to help the pain for me. Tried Oromorph & other pain relief but felt sick & like a zombie next day and did buggar all for the pain too.

I keep asking about cancer markers as mine have slowly been creeping up with each additional bone/vertebrae diagnosed with having cancer in. I keep getting told not to worry about them as they don’thow much for bone cancer. Hard not to worry when they’re increasing!

I’ve also been put on CDK 4-6 inhibitors - Fulvestrant injections 4 weekly & 100mg Abemaciclib tablets twice a day. I have Zometa bone strengthening infusion every 6 weeks ( Had this for around 4 years)

Personally best advise I can give is  - 1) Do plenty of research, 2) Ask plenty of questions ( I usually send my oncologist secretary a list of them prior to appointment) no excuse not to know the answer then ( hopefully)

3) Don’t be afraid to ask for a second opinion!

I got a different oncologist after my initial secondary diagnosis as they said ‘they were going to take a back seat with my treatment’ Sorry but I want someone driving this cancer bus not taking a back seat!

Hope you’re wife can get her treatment and pain relief sorted soon and do ask anything and everything..

It’s a great place to find things out on here  

All the best.

Many thanks for your reply Lucifer.

My wife has since been diagnosed as triple negative on biopsy (was strongly hormone dependant before). Radiation has driven down the  PET SUVmax on her spine mets by about 50%, but she has some lymph nodes lighting up too, and they've about doubled. She starts chemo (Taxol/Carboplatin) tomorrow, so hopefully it will help.

Our "family oncologist" has said how he'd approach it, but my wife's insurance isn't playing ball as it's not a licensed regime. Her "real" oncologist is on board, and fighting the insurance company on it. We're both also hoping for Trodelvy to be approved soon, as that was "family oncologist's" first choice.

We've just got back from a long trip to see my Mum, who was diagnosed with de-novo stage 4 lung cancer 2 weeks after my wife got her own stage 4 diagnosis. My mum went down hill very, very quickly, and will likely pass soon. It really took its toll on my wife (I didn't want her to come, but she insisted. They are very close) so I'm in damage control mode, trying to keep her spirits up. I don't know why I felt I needed to add that, I just did.

I hope that your treatment is going well, and continues to do so.

Cheers,

Andy

Hi Andy

So sorry to hear about your mom’s diagnosis & situation. It never rain but it bloody pours down.

It seems everyone knows more than a couple of people with cancer. My mother in law died in April from a rare form of lung cancer & by the time they found it, it’d  spread everywhere in her body & sadly she passed away within months of her diagnosis. 
Please don’t apologise for sharing anything, that’s what this community is all about. Sharing, caring & hopefully helping.  

Is the Trodelvy not available on the NHS? There was a lady on Twitter (Kate Northcott Spall @campaignkate) that used to advocate for patients, to try get them the required drugs needed that aren’t NHS funded or NICE approved. Might be worth a try & speak to her. I’m sure if she can’t help, she’ll point you in the right direction.

On the plus side (if there ever is one). I saw Kris Hallenga ( Founder of Coppafeel) talking about her new book on this morning yesterday & if there’s ever a ray of hope for us breast cancer patients, it’s people like Kris who has lived with Secondary Breast Cancer that has spread to lots of places in her body for 12 years & still managed to create a charity to help other young ladies know their own body, so they can confidently go to their GP & tell them of any changes that’s not right for them, so they can get early diagnosis & treatment. Think we all hope for 12+ years of longevity. 

Hope the chemo works for your wife & continues to kick cancer in the arse.. also hoping your moms situation picks up too & can give your wife a bit of a positive lift that I think we all need..

Take care both of you

Lucy

Hi Lucifer,

Thank you for your kind words.

Trodelvy isn't approved in the UK yet (MHRA), but hopefully will be in a couple of months. After that there's the battle to get the NHS to actually fund it (NICE). Worst case is we go to France (my wife is French) and the "family oncologist" reckons he has a way to get it. It's still supposedly a 3rd line drug though, and very expensive.

I've read many, many success stories for SBC, but these are mainly hormone/HER2 positive cancers. Sadly for TNBC, there are not  many to be found.

I don't think my mum has long. She's stopped responding to us, and they've stopped everything except pain relief to let her go peacefully. 

Cheers,

Andy