Trying to stay positive can someone help,.

Hi

i am about six years down the line from you. My initial spread was into the bones, lower ribs, then over the last couple of years it spread to liver and both eyes. You will have bad days but life goes on. I have lots of hobbies and we plan in lots of days out and at least two hols per year. I am now back on Tamoxifen with lots of variations over the years plus monthly Denosumab jabs plus Adcal tabs for bones.

pain can come and go. I was awful for a while till they operated on my spine and removed some crumbling bones which was brilliant for a few years. Pain returned a while ago so now on permanent slow release morphine. 

The worst part is all the hospital apps but just make sure you factor in treats.

Hi

Thank you so much for your reply and I hope that your operation on Wednesday help you heal. I have just read through my last post and did giggle I said I went for a 2min walk each day - well that just gets me to the end of the garden and back how funny I actually walk 20-30 mins each day also I am due to have Zolendronic injections to help strengthen bones I will factor in treats and take to heart and thank you for your reply

That op was about two years ago now, this site makes it sound like yesterdsay. I was on Zolendronic at one point. Make sure you have Udderly Cream ready for sore feet. It’s brilliant and you can buy it online.

i did wonder about 2 mins walk but you are doing better than me as I have to use wheelchair for big shops or long walks. I am luckily as my daughter in law wraps me little sanity presents for bad days. Yesterday I had a heart shaped tin of little heart shaped sweets to keep the doctor away.

i ended up in hospital all last week due to severe sickness and not eating or drinking so got very dehydrated. Home again now and feeling much better.

Hello, I'm also new here (literally joined 3minutes ago) and I've just found your post.

Your life certainly isn't over, please don't think that. 

I was diagnosed for the second time January 2018 (first cancer was 2012 when I was 29,had mastectomy, chemo and radiotherapy then tamoxifen). I'm doing really well so far. I was started on letrozole and Ibrance straight away and they're working, cancer is shrinking and bone secondaries are beginning to heal. I was having denosumab for bones but recently changed to zoledronic acid as I've got a portacath (my veins were really bad and it was a struggle to get blood so it makes things much easier) and oncologist said I might as well use it instead of having an injection. I'm being reviewed by the team and will probably be put on 3 monthly zoledronic acid as I'm doing so well.

I was also having Zoladex injection every 4 weeks but just had my ovaries removed so I don't need to have that anymore.

I spent a of 2017 in pain and since I was diagnosed again in 2018 I've been 95% pain free.

I'm at work full time and have just been given approval from oncologist to travel to Jamaica later this year. I don't over do it because I do get tired quicker than I used to but that's to be expected. 

Apart from all of the appointments I'd say my life is completely normal, so please, please don't think that your life is over. I know exactly how you're feeling as I was the same but one day I decided that I make my decisions, not my cancer. 

Xx 

Mrs Muffin,

Thank you for your kind reply

Thank you for your support, I think what is worrying to me is that they are not looking at mastectomy, it has gone to lymph nodes and some small spots in hip and bottom of spine. I am also planning to keep working to have the normality and support from my work colleagues is important.

I have passed the menopause and right now am on lertrozole and AD-Cal.  I will get Zoledronic acid and a chemo type drug called Ribociclib (Ribo). I am just nervous and hope the decision not to give a mascetomy is the right thing.

I am heartened to hear that you are doing well and are mostly pain free, I would take 95% pain free any time well or unwell.  Your reply has lightened me.  I hope the treatment I am currently on does shrink the tumor and I can start to take control.

Jamacia sounds wonderful and thank you for your positive response

I haven't heard of Ribo, I'll look it up. 

I take calcium too but hated ADcal, whenever I go in to collect them I ask for calcichew. They're much nicer and smaller too.

Trust the Dr's, maybe they'll do a mastectomy in the future?

I know that the lymph node where mine has come back is inoperable but its shrinking and being controlled so perhaps they want to shrink yours first, then talk about surgery.

Sounds like a few little bits in your bone so fingers crossed they'll heal well. My Dr said bones take a long time to heal. When I had my bone scan it showed little bits all over me. I was told it looks like I had pepper skpinkled on my skeleton and I had a lump about an inch back from my forehead, it felt like half a malteaser stuck on my skull but about 10 months after starting treatment that lump has completely gone.

Please have hope, I know its not the best news but the way I see it, its not the worst either. Breast care nurse said that even though it can't be cured it can be controlled long term and with new trials and medications being tested all the time on really hopeful, hope you can be too 

Xx

Thank you Mrs Muffin.

Staying positive and although I have only just joined this site today myself, this is really helping me talking to other people who are going through the same thing.

xxxx

Hi there,have just read your post and I so understand what you are going thru. I was diagnosed just under a year ago with primary BC and secondaries in my bones ( pretty much all over) . I was devastated and the shock is overwhelming.

gradually you do start to emerge . I didn't die straightaway as I imagined I would . I can't say every day is easy but you do start to learn a new normal. I too am on letrazole which is giving me joint pain and the fatigue hits me every afternoon but I am here and I plan to be here for a long time yet. 

I had lumpectomy followed by full mastectomy and axiilla clearance. I am still struggling with the recovery . The radiotherapy has left me with soreness. But I am so glad to still be here. You too will learn to breathe agin and lift your face to the sun.

our lives are not over!! 

I wish you hugs and love from a fellow traveller xx

Boogirl

Thank you yes still trying to get past the overwhelming part I also imagine I am going to die straight away.

No plans for me yet for surgery or radiotheraphy they want to perscribe Ribociclib ?

Keep positive for your recovery

Hugs

Hi

there will be reasons why they are wanting you on the drug first before other interventions. I think that is quite common.

It may be that they are wanting to treat you more holistically at this stage but it may be worth asking the medics the question: is surgery and /or radiotherapy part of the plan for you.

i don't know anything about Ribociclib ( although initially Palbociclib was considered for me but maybe further down the line)

it sounds like it might be from the same family of drugs which I think are chemo type drugs.

there will be lots of other users on this site who are far more knowledgeable than me and who may give you some insight into that particular drug.

thinking of you. Keep chugging along.

xx