Hi

i am new to this forum and was diagnosed with stage 4 breast cancer in May 2020 . The cancer had metastised to my spine  and hip bones at the time of my first diagnosis .

I have been taking Letrozole and Palbociclib and so far so good. I have had no side effects and feel fine. 

It is really good to hear about long term survivers. I will sign in to the forum from now on and look forward to sharing experiences.

Pat xxx

Hi Pat,

I too have been diagnosed with advanced breast cancer March 2021, I did not have any symptoms, it was low blood count, followed by bone marrow biopsy to investigate cause, that brought about the surprise and devastating diagnosis. I have mets in spine. I had always gone for my breast check appointments and last one, in September 2018 was normal.

Currently, I am on Letrozole (for past 5 weeks) and Ribosiclic (for 1 week) and I do not have any negative side effects so far. 

Oncologist has told me that I can be on that treatment for years (could not tell me how many years!) and then if/when it stops working, I would be changed to other options of drugs. 

It all sounds positive but people's reactions can get me down, with well meaning pity and flowers and chocolates....

I try to stop looking up Dr Google, but then I found this thread which has more current and positive stories.... I think medicines have improved greatly, even in past few years, and hopefully will continue to do so. 

I have faith in my doctors and in God and I feel they will carry me. There is no point surviving, if we cannot be positive and have a good quality of life. 

Hi NotQuitting

I just wanted to message you as it sounds like we are on similar treatment. I was diagnosed with SBC at the beginning of March this year, it has spread to spine, liver, lungs and ribs.

I am on ribociclib, letrozole and zoladex. I have also started the denosaumaub injection to strengthen my bones. So far I have had very little side effects and feel good. My first ct scan is the 8th May which I am v nervous about. 

Have the mets on your spine affected your mobility at all?

My symptoms started with lower back pain, and then I thought I had slipped disc. Before I was diagnosed I saw a chiropractor who manipulated my spine, it is possible he caused some mini fractures on my spine so my mobility has been badly affected. Since treatment started my back feels stronger and I am just starting to walk without my zimmer frame. 

Hi Daisy1257,

I did not have any symptoms at all.... just feeling a bit tired now and then, but nothing else. It was a blood test that showed low blood count that started investigations. So it was a big shock that cancer had progresses to lymph nodes and spine. 
oncologist put me on letrozole and Ribo. I will be starting bone strengthening treatment in next couple of weeks too. I am feeling fine, actually the tiredness is gone since starting letrozole, which oncologist suggested might happen.

apart from initial shock, I have been mainly very positive..... and this forum has strengthened that mindset. I do get the odd bout of sadness of course but we need to think positive. Breast cancer is very well researched compared to other types and they are making new and better treatments all the time. 
the fact that I will not be having chemo, surgery or radium is good in one sense, but people look at you when you say it is incurable. But as my cancer nurse says, it needs to be looked at as a critical illness, so that is where I'm at!

already oncologist said my lymph nodes are shrinking, so I'm sure your back pain will improve too with treatment. 
we need to live each day, as a wise woman once said 'who promised us a tomorrow?'

Hi Daisy1257,

My first diagnosis was made on 30 March 2021, and oncologist put me on Letrozole on that day. Two and half weeks later, I went back for checkup, and by then I was feeling better and oncologist checked lymph node under my arm,  which she said had improved.... even in that short time. 
I am on Ribo for the past week, and will have bloods and ECG done next week by Nova nurse. I have had no other treatment. I was told that it was incurable, therefore I would not benefit from chemo, radium or surgery. Perhaps chemo may be necessary down the line if hormone treatment stops working. Hopefully that will not be for many years!

I will be getting bone strengthening treatment too, which negates against fractures, or progression of cancer also.

Oncologist told me that they have found that by adding Ribo to the Letrozole, it makes Letrozole more effective and also helps Letrozole work for longer. If I have side effects from Ribo, oncologist will reduce dose to find what suits me. It is important that we have good quality of life too. So far, so good with both meds, but it is early days yet!

If I had not had blood test last November and investigated the cause of low haemoglobin,  I still would not know I had cancer! It is a sneaky disease!!!!

I resent being a cancer patient..... I would prefer to be rid of it, but such is life, and perhaps having this illness will help us focus on what is important in life, and not worry about trivial things. We must live in the NOW and not worry about tomorrow. 

I hope this answers your questions and dismisses some of the fear of it all.

Here's to many years of chats! 

Thanks for sharing the info about the effectiveness of ribo and letrozole together, my oncologist hasn't really given me any details along those lines. It was just a case of these are the hormone drugs you will go on. He put me on ribo first for 2 cycles then started zoladex. The zoladex can cause tumour flare which is why he has staged the drugs. I only started letrozole last week, originally I was put on tamoxifen.

I'm the same I resent bring a cancer patient but life is what it is and we have to live it the best we can. I am determined to not let this disease dictate my life, I will learn to live with it. 

I can't believe yours was picked up on a blood test and you had no symptoms, it just goes to show its always worth checking things out.

Yes definitely, here's to many years of chats.

I will keep you posted on progress, it sounds like you are handling things really well but I'm here for support if you ever need a rant!! 

Hi NotQuitting

I had my first CT scan results yesterday after starting treatment and it was really good news!!!

They said I have had a partial response to treatment, the lesions in my liver have all started to shrink, they have reduced by 8-12mm each.

The CA marker in the blood has also dropped dramatically. They said they would have been happy with a stable result but the fact it is shrinking is even better.

It's a long road but so nice to hear positive news following diagnoses. There is hope. X

Hi Daisy1257

That is fantastic news!

We are so lucky to be living in 2021, where we have such knowledge and progress on cancer treatments. This Letrozole/ Ribo combination is relatively new and seems to be very effective.

Reading posts from people like Mare and Mammacasse is so encouraging, I want to thank them for their stories, they are sparks of light amid  very bleak reading elsewhere. 
I start bone strengthening treatment next week. I was put off Ribo for week 3 as my bloods were low, but I will be back on it again soon I expect. I was told this can happen and I may have to take breaks or go on reduced dose until they determine what suits me. 
wishing you continued success on treatment.

not quitting

Yes the treatments and options now are so much better. I was so relieved to know it is doing some good.  I was only put on letrozole about a week before my scan so I am hoping it will continue to do more good things by my next scan.

What bone strengthener will you be on? I'm on Denosaumaub, I have had 2 so far, I had one yesterday along with my zoladex injection.

Yes I have heard about low white blood cells with ribociclib, it seems to be common. I hope you get back on it soon.

Take care