I need a friend - cancer in my spine

Hello Happy thoughts

I just wanted to respond to say that you are not on your own here.

I was diagnosed in April this year firstly with BC then following scan learned I have some spots in my bone bottom of spine and hip area small spots none the less enough for them to say no chemo / mastectomy for me.

First time diagnosis, I was and still am devastated by the results.  It is early days for me and I have good days and bad ones.  My friends and family have helped. I also have found support on this site by lovely people who are going through the same thing and REALLY know what you are going through.

A lot of people are further along than me but I have learned that everybody's journey is different - I have grieved for the person I was and now the person I am. I am also ANGRY but don't want this to define me.  I don't want to spend every day crying and want to live for the moment.

You will get a lot of support on this site.  I am currently taking Letersole daily.  Was on Ribo as well but blood did not hold.  I have been switched to Palbociclib.( a type of chemo in tablet form) on first cycle and knock on wood bloods are holding.  Also need to have bone infusion every 4 weeks. I have led legs but no nasty side effects yet but early days.

If ever need a rant or a chat you can always email me or just post on here where people will not judge.

Stronger together.

Lyn

Hi lyn

Thanks for getting back to me. There doesn't seem to be too many of us around, all out enjoying themselves probably. 

I would love to rant at you, and cry and hopefully laugh. Do you have to be "friends" to private message?

Got the OK from the dentist today to start the bone juice infusions. He asked me what the prognosis was and I couldn't stop crying. Very unusual for me as I keep my emotions tightly bottled up inside. 

Hi Happy thoughts

I am new to the site as well so just finding my way round.  I don't think you have to be friends to private message but I did send you friend request. If you want to private message me click on the envelope by your name and that should do the trick.

I had to have a tooth out before I started 'bone juice' then wait 4 weeks to heal.  I have had 2 infusions up until now takes 20mins I honestly can say it was ok for me.  Needle a bit pesky going in back of my hand but other than that for now ok.

You need to let your emotions out - I cried and cried and that is normal. I still cry and I am not sorry for doing so you are allowed and I suppose it a bit like grieving.

Please let me know how you are getting on

Your Cyber friend

Lyn

Stay strong

I've sent you a private message. I'm taking tamoxifen (today will be day 2) while waiting for a chemo slot. Off to the Isle of Wight for a 2 week big family holiday on Monday! Planned a year ago, now dreading it. May have to come back early if chemo becomes available but my paranoid brain thinks they want me to have a last holiday.

Waiting for bone scan. Ac chemo every 2 weeks for a few rounds to see how it goes, unless results of bone scan indicate otherwise. 

Hi

Enjoy your holiday, yes it will be hard, I just come back for a few days break in Suffolk and I will say it was just what I needed. You will benefit from it for sure.

I know what you mean about paranoia (in the same boat my friend) but you have to live for today, have no regrets.  Do something on holiday that you would never do be fearless. 

Bone scan is ok - you have to be still in a tunnel for about half an hour - I fell asleep - of course it is an anxious wait for the results but you cannot control the wait time.

Let me know how you go.

Take care of yourself

Lyn

Hi , I am newly diagnosed too, 4weeks ago.

I had breast cancer in 2004 and had a lumpectomy,  wide local excision followed by radiotherapy and 5years on tamoxifen 

I have suffered with pain in my shoulder on and off for over 30years, I tore my rotator cuff. When i have a flare up I usually treat it with painkillers or have a cortisone injection,  I've had many tests scans, xrays etc over the years and just learnt to get on with it. 

So imagine my shock after an MRI scan to be told 2 days later that it's cancer! Following further tests I have now found its secondary cancer also in my spine, pelvis, both femurs and my other breast.

It's been a whirlwind few weeks and I  still can't quite believe it.  I feel that if I cry I'll never stop. I've always been a strong person and the backbone of the family, but now I  feel like I've let everyone down,  my family are devastated by this and that hurts the most x

Thanks for getting in touch Juliebell.

I know exactly what you mean by feeling you've let everyone down. I feel the same way. It's my job to protect them and now I am the cause of so much pain. I've told everyone I have breast cancer, but only my husband knows it's inflammatory and secondary. Don't know when, how and if I should give them more information. I still don't have alot of the answers yet myself!

You don't mention a treatment plan, or is it too painful to go there? I'm waiting on a bone scan to see the extent of the spread, still hoping I'll have chemo (now that's a statement I never thought I'd make) as I want to try everything.

Still recovering from the loss of my daughter (aged 10) in 2014. Haven't we suffered enough?

Hi Happy thoughts,

I told all my children at the same time, as soon as we knew. They are all adults and we have teenage grandchildren who we told a week later. I felt that they needed to know as we are an extremely close family. We now have a WhatsApp family group for the adults and I put everything on there so I'm not saying the same thing a 100 times, it works for us and everyone knows what's going on. 

As far as treatment goes i am taking letrozole,which I think is a hormone inhibitor, along with ibrance(palbociclib) chemo in tablet form, adcal(calcium and vitamin D and I'm due to start denosumab when I finish having some dental work done.

It still feels a bit unreal to be honest and the only pain I have right now is in my shoulder, which is really bad but I  am now taking morphine for the pain.

I'm so sorry that you have also lost your little girl, it's heartbreaking but if you can survive something like that, you are an incredibly strong person and yes you have definitely suffered enough xxx

Hello happy thoughts.  You've had a lot of sorrow and I was quietened to read you'd lost your 10 year old daughter, and now this diagnosis.  

I wanted to give you some hope.  At the end of 2017 I too was diagnosed with breast cancer and bone mets.  I think they call it denovo when you're diagnosed with secondaries straight off.  I've been on Palbociclib, which worked for about 8 months and then a scan showed small deposits in my liver. I'm now on Capecitabine (oral chemo tablets). 

I'm now 20 months down the track and still healthy and doing more or less what I did before the cancer, with more treatment options in front of me.  Cancer is such a big word that evokes fear into all of us.  But my personal experience is that drugs do slow things down. And there is still life to be lived where cancer is not all we think about.  This takes time, and you are newly diagnosed, so be kind to yourself as you bring this new reality into your life. 

Much kindness

Robyn