Diagnosis and treatment

Hi Nickyd1,

I am seeing my Onc first thing on Monday morning to get the results of my CT scan. Due due to a recent bone marrow biopsy, I have been told that I have Secondary cancer.  I had breast cancer in 2005 aged 36. 

You’ve asked for others on similar treatment as yours to give help/advice, obviously I can’t  help you in that way (yet)  but I appreciate you of course have a lot to take in and I just want to wish you all the very best.  I would imagine your mind is buzzing with so thoughts and hopefully others on the same treatment path will come forward.

xxxx

Hey Nicky, 

Back on this god damn rollercoaster we call life! 
Has it sunk in yet? Even if you had a feeling to hear it just floors you!

But treatments are great now and you seem to have a plan, I also have the zoladex once a month at my gp surgery, it’s quite painless and so far I have no side effects from this, I was also given letrozole after taking tamoxifen for 5 years, I couldn’t tolerate the letrozole I had horrendous pain in my legs like someone was trying to bend them the wrong way, I’m not saying it’s gonna happen to you but I’ll put it out there, I’m taking a oral chemo called capcitebine it’s the 2nd one I’ve tried as the first called palbociclib wasn’t effective. Since the change to capcitebine my tumours have remained stable and I’m leading a full life! My secondary breast cancer tumours are in the majority of my spine all of my sacrum my SI joints and a spot on my rib! I have six fractures in my spine I’ve had 3 cemented (kyphoplasty) and it’s made such a difference to my life and I’m getting the other 3 done in the new year. I’m on a concoction of pain relief but it keeps me on my feet! Good luck with the radiotherapy and give me a shout if there is anything I can help with. 
Love Jo xx 

PS Make sure they give you the vial of denosumab to hold and warm up before they inject you, I’ve been told it’s a bugger if they inject while it’s cold from the fridge, I’ve always had mine given to me to warm up, so worth an ask xx 

Het nicky and Jo

First things first nicky take every day at time and dont push yourself too much irecenrly have and my backs mets feeling it now. But yes I'm on lethzole and zoladex 

Nicky 

I too have spinal mets I've had radiotherapy to lumber thorasic femur skull and neck. Made world difference 

I tooo on lots pain killers and  back wnd crushed vertebrae still hurts though yesterday took half naproxen and few hours it gave me bit pain but hearing in mind I already had slne had mst pre gablin paracetamol oral morphine that Day. You mention kyroplasty I want to be put forward for ther cause I dont want be on painkillers rest my life is it as straight forward as research shows?

I'm getting my first ct scan results since diagnosis on Wednesday going to see then and push something to be done.

I've had nightmare with ny calcium since diagnosis it's only been high enough once to have denasaub. I've tried calcium d3 twice day now I'm on cacit twice day let's see what levels see Wednesday too.

Xxx

Cazzy

Hi Cazzy, I mentioned to my oncologist that the ‘hump’ as I called it as my spine had curved quite a lot that it was impacting my life as my height had gone from 5’ 2’ to 4’ 11’ i was relying heavily on my walking stick so she referred me to a spinal surgeon I went to see him and he said that he could help me. I had an MRI also before I saw him. 
The day of the op was pretty straight forward, I walked into the room before the theatre and was asleep in a moment, I woke up and was given some pain relief via a canular and then taken to a room to recover, after some tea and toast I went home the same day! I felt fine after apart from some lower back pain but I was told to expect this as my spine had been stretched, I coped with pain relief for a few weeks till I was back to normal but the thing I noticed straight away was how my breathing improved! The curve in my spine was trapping my lungs so I struggled quite a lot but after the op I took a deep breath for the first time in like forever, I used to have to make myself yawn to take a deep breath so I kept taking deep breaths because i could hahah it’s the simple things! Cazzy it was the best thing I’ve ever done! So ask your oncologist for a referral if it’s bothering you. 
Love Jo xx 

Hey jo

That is such loss on height was the cancer which caused thst the hump you call it did cause you lot bother didn't it?

I have asked my oncologist  but think she was waiting see what my ct scan shows I have pains else were like this before goes aaat but this pain has got worse I increased morphine see that made difference and nope it didnt so Macmillan upped my pre gablin you see my crushed vertebrae and pathological fracture are at same place csnt remembers bot being in pain for last two years or over it. I dont want be on pain relief rest of my life do you know what I mean xxxx

Hey Cazzy, it was the collapsed vertebrae that caused the hump, I didn’t even notice it till I saw myself sideways in a mirror at home and shouted what’s that!!!  My son said what Mam, I said that on my back and he’s said oh Mam I thought you knew we didn’t want to say anything, so I became very conscious, I felt shitty enough with cancer, the pain and now this! Collapsed vertebrae can cause this... who knew! So I’ve had the bottom three done and then the three above it, it’s also learning myself to walk straight again. So keep an eye on yourself xx 

Really pleased to hear the rads helped with your pain, I’m not struggling with pain at the minute , take amitryptaline at night and that really helps. It does flare up though so it will be nice to stop that. 

Hope the appt goes ok tomorrow, blooming calcium needs to play ball and get up! 

Nicky 

Hi Jo, it is a rollercoaster isn’t it? I think I’ve had a delayed reaction to the oncology  appt. my adrenaline kept me going on the day but Saturday I had a shut down and took to my bed with a headache, not like me as once up I stay up! 

Thanks for the tip about warming the vial, it’s little things like that that can make a big difference. I’m dreading the letrozole, I’m going to miss the oestrogen in my body, I’ll go into the menopause and all that goes with it. 

Did you see the scan of your mets? I know mine are in left pelvis, some ribs which I can feel, and he mentioned in my skull. I was so bogged down with treatment I didn’t ask more. 

Hope your new year op helps, in the meantime hope the painkillers keep the pain at bay. You give me hope that I will be able to manage, thank you x

Hey Nicky, I also thought howay then let’s have this menopause and everyone that goes with it and to be honest it’s absolute shite! 
I was fine at first the hot flushes were a nightmare but I hardly get them now, can’t remember the last but it’s not nice at all! Also your sex drive disappears in a heartbeat! Now I wasn’t a sex maniac but howay I’m still young but poof gone forever... my partner is very understanding but I can imagine his frustration sometimes, I know this message is quite frank and honest and I hope you aren’t offended with what I’ve written I just wish I had been given the heads up on the menopause and the injection I have once monthly that’s causing it! I had to go for an internal this morning as my oncologist thought I had a prolapse, so I explained to the nurse who said how about a smear while your hear... I was like so hear is the story, so she said there is no prolapse without even having to go in and she said I wouldn’t even attempt to put a speculum in there and I was like result! I know there is things I could use to stop the dryness but it’s not just that, things became painful so I am too frightened to try again... once again I apologise if I’ve offended but like I said I wish I had been told the bigger picture instead of just thinking it was just all about hot flushes!!! 
As for my scan results the most recent as in last week I’m waiting to hear about them, but previous scans I’ve seen the ones in my spine as there is quite a lot but I only got to see it when I went to see my spinal surgeon it was quite fascinating, but all the other places I have it remains a mystery. It’s sad to hear you crashed and burned but that needs to happen so you can deal with the future, take someone with you if you can for appointments as it can become white noise when your stressed 

Keep smiling Nicky xx 

Hey all =)

Now this is confusing too two nickys haha I nicky I'm glad your smear went well and no prolapse. 

Nicky I didn't have any sex drive before now can you imagine it that's because my anti depressants. Now tbh in don't see man be like oomf your fit now I'm just zilch. I had night sweats for week first zoladex. 

I'm. On lethzole it's not too bad my joints ache etc and stiff in morning get dry mouth but djnnno that morphine. 

My day was hypnotherapy day after not sleeping till five am then mother waking me up as needed get sorted before cleaner got here, so then attempting nap but then macmillan nurse rang so blink of an eye had to get up after naps hypnotherapy was really good was unsettled 

I'm now in bed after taking meds forgot take paracetamol at tea time so my back was in bits tonight but unfairness my morphine and pre gablin should be working so as was saying in bed had meds for my oral morphine before sleep and a half dose of lorazpam as can't sleep and help anxiety as scan result tomorrow =( and let's see what happens regarding calcium

Love hugs and cat paws

Cazzy zzzxx