Thank you.

Yes it is America based but there are ladies on there from all over including the UK. There's a lady on there who goes by the name of best bird, and has issued a book pdf form free of charge with information and various advices.

Hi Mare. I've just started reading this post and would like to hear more about your lifestyle changes as I too have now been diagnosed at Stage 4 Breast Cancer. If you are able are you willing to post a link to your  webpage at all? 

Hi,

My sister had a biopsy breast done. Phone call today to ask her to come in with someone. I am that someone and feeling devastated. 

Your response and great spirit spoke to me here thats why i have reached out. 

Hi everyone 

I hope everyone is still doing well. I just wondered if anyone has experience with the CA15-3 Marker. 

At diagnosis mine were 1200 but started treatment and they went down to 600. In Sept they were 562 but then in Oct they have crept up to 598.  I know its not much of an increase but just wondered if this means my cancer is on the move??? I have a scan early November but worried sick now about this marker.

I have SBC in spine, pelvis and liver.

Thanks 

Hi Jane

Sorry to hear about your diagnosis. I have secondaries in spine, liver and little in lungs. Mine is ER+ do have been put on hormone treatment, Ribociclib, letrozole and zoladex. I also have Denosaumaub every 4 weeks to strengthen bones.

What type is yours, have they said?

Back in March I was in a bad place as the cancer had weakened my spine and caused 4 fractures. I could barely walk. They have now healed and 2 scans so far have show big improvements. Side effects for me are minimal so hoping to stay on these drugs as long as I can.

I have found exercise helps me deal with the anxiety around scan time and just in general gives me a boost. I also drink lots of water every day. 

Lots of treatment options available and new drugs coming out all the time.

X

Thank you for sharing that Daisy. 

You have made me smile for the first time in days and have given me some hope ️

Do you mind me asking which hospital is treating you?

And when you were first diagnosed? 

I ask as I live in Devon and my local hospital is very small and although very lovely, I don't want to miss any opportunity because of our location. 

It is all very new for me at the moment and I'm still really struggling to cope with my diagnosis.  I know how important it is to stay strong and be positive. However, it just feels devestating at the moment and I find myself feeling scared and overwhelmed most of the time.

Thank you for the advice about exercise and diet.  I will give it a go

Mine is Invasive lobular cancer, ER+ and her2-  and so far the secondaries seem to be confined to my spine. 

However, the CT scan was only of my chest and pelvis, so I am currently waiting for a bone scan to see if it's in my neck, skull, arms, legs etc. 

The consultant did mention zolodex, letrozole, palbociclib and Tamoxifen but they haven't started anything yet. 

I will ask about the other drugs you mentioned when I go back (thank you). 

They didn't get it all the tumour out with my recent breast surgery, which is really worrying me. I would really like them to go back and do a bilateral mastectomy now (just to give me the best chance) but they don't seem keen to do that?  I wondered if anyone else had any experience with this issue?

Thank you so much for you reply.  It's been a Ray of hope xx

 X

Hi Jane

I am based in North Wales.  I was diagnosed in March 2021. Complete shock and out of the blue. I started with back pain on boxing day, 6 weeks later I could hardly walk. Originally I was treated for pulled muscle then slipped disc. Then I went to A&E as pain was excruciating, that's when they found it. No lump on breast, one side just slightly firmer than the other.

I am 37 with two young children who are 6 and 8, I'm absolutely devastated.

Your right it is devastating.  I have sad days now but not as many as I did initially. I'm putting my faith in science. Ribociclib and Palbciclib are relatively new drugs which came out in 2016. Alot of women are still on these drugs from when the trials started and are still stable and living relatively normal lives.  This gives me hope that other drugs will come following these. 

Palbciclib is like a sister drug to the one I'm on Ribociclib. I think you mainly go on Palbo if you just have bone mets but Ribo if you have it in liver or lungs.

My oncologist has said radiation will only be used if I'm in pain with my back. At the moment I'm not and mobility is really good. I think chemo comes later down the line when they have exhausted all of the hormone options.

There are also two other forums which I fiine really good, one is on Breast Cancer Now and the other is the Macmillan Secondary Breast Cancer forum. This forum is good but not very active. The breast cancer now forum is very active of lots of ladies on there who are on Palbo and stable!

Also on the macmillan forum in the chat section they have started a positive stories thread for stage 4. This will give you a lift.

I have been told surgery is not an option once breast cancer has spread. But I have read about women who have responded well to treatment and ended up with no evidence of disease, then the surgery has come after that.  I'm aiming for no evidence of disease!

Do you have family? And good support?

Anyway let me know what treatment they put you on and feel free to fire questions, I will help where I can.

Take care

Daisy

Hi Daisy 1257,

I'm just checking in with you as we were diagnosed around same time and on the same path since last March 2021.

How are you doing? I had scans couple of days ago and all is good. I'm still on Letrozole. No side effects, except some hair thinning. ( I'm using Nioxin shampoo, conditioner and serum for that and it has improved)

I HAVE CHANGED FROM Ribosiclib to Palbosiclib, 100mg, which is suiting me better. Ribo was lowering white blood cells.

I will now have check up every 3 months, instead of every month, which is progress. Oncologist is pleased with my scans and I'm feeling fine. 

Let me know how you are getting on. 

Best wishes, 

Not Quitting

Hi Not Quitting

Lovely to hear from you and I am glad to hear you are doing well. 

I have now been moved onto the Cape tablet. In my Jan 22 scan there was growth in the liver.  Originally they put me on weekly paclitaxel low dose but my markers were still increasing so I have now been moved to Cape. I've only been on it 2 weeks so hope it works well for me.

It's strange as physically I am the best I've been since diagnosis and I feel really well. Although my markers are the highest they have ever been.  It doesn't make sense. I had another scan a few weeks ago and that was stable so hopefully at the next one I might get reduction.

I have been working hard on diet and also do weekly infra red sauna and weekly hyperbaric oxygen.

Check up every 3 months sounds good - it's nice when you don't have too many appointments isn't it!!

Keep in touch

Daisy

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