Rising tumour markers

[Hm50]

Hi I’ve just joined this group and was wondering if anyone has any info on Inrance and letrozole combination. My oncologist told me that my tumour markers are rising and I’m wondering if anyone else on here had experience of this. I’m really worried that they will not be able to change combinations and that this is all they can give me. I have really bad shoulder pain and it isn’t getting any easier to control. Thanks for any replies in advance

[MyMiracle13]

Hi. They can change the Letrozole to Fulvestrant if your oncologist thinks it’s the Letrozole that not working.

[Hm50 in reply to MyMiracle13]

Thankyou for your reply. I’m really worried due to the pain I have that my target therapy is not working so hoping she changes it to something that will. Hope you are doing well

[Teddielottie]

Hello and welcome on here ! I’m in the U.K. too and next month I will have been on this combination for 3 1/2 years . I was diagnosed with bone Mets (de novo) late 2017. I had really bad shoulder pain for the first 3-4 months , but have been ‘stable ‘ for a long time since . My onc did tell me that this combination was my first line treatment and to think of it as being the first rung of a ladder , with many other options available thereafter.

How long have you been on this combination and where are your Mets ? Do you know what your tumour marker levels are ? Many oncologists don’t focus on them as they are not a reliable indicator for some people , focussing primarily on scans and how you feel . I know it is very worrying when you are first diagnosed and I hope the ladies on here will help reassure you , but do ask any questions. Take care! x

[Hm50 in reply to Teddielottie]

Hi I’ve only been on this combination for a year and had a rough time when I first started it. It also in in left scapula and clavicle and I had palliative radiotherapy at the start for the pain. It must of been there for a year previous to that as I assumed I’d pulled a muscle at work when the pain began. I have no idea what my markers are but for a while my oncologist was saying they were reducing. She also sent me a letter saying the cancer was stable but I’m worried now the markers are rising and the pain is back. Thanks for your reply and hope you are feeling well.

[8576]

Good news that you are stable! Markers often aren't a reliable source so don't worry. Ask for some Thelp with the pain. That can wear you down.

Cheers, June S.

[8576]

Welcome here. You have found a great place for information and support. No to worry. There are lots of treatment options after Ibrance. Wishing you well.

Cheers, June S.

[Hm50 in reply to 8576]

Thankyou very much people on here are so helpful

[Totheriver]

I have also been on this combination for just over two years. I have bone Mets throughout my spine. I also had radiation at the beginning cause I had a terrible sore back for at least six months before. My oncologist also does not go by tumour markers because she said the are not accurate. Scans tell what is going on. Also my first line of treatment and more to use if this one fails. Take care💕

Theresa

[Hm50 in reply to Totheriver]

Thankyou I think I just panicked when she said they were going up. Think I read too much online too. Hope you are well

[13plus in reply to Hm50]

The tumor markers can be unreliable so try not to worry about those but I would speak to your doctor about worsening pain. Perhaps they need to move your next scans forward and/or change the letrozole to fulvestrant. There are more options beyond these too so don't feel like you have no options left!

[Hm50 in reply to 13plus]

Thankyou and yes the pain is a lot worse at the minute. I’ve got a ct scan next Thursday morn so I’m hoping to speak to oncologist soon after. I always worry that there is nothing else they can give me which is frightening.

[BARBIE70 in reply to Totheriver]

I’ve been on this combination for 6 months and get left shoulder pain .For the first 4 months my

tumors markers crept up but my oncologist wasn’t worried as this can happen with shedding of cancer cells .

After my 5 month scan my spine mets are stable and the tumors markers went down fir the first time .

Go by how you feel and your scan results this is the advice my onc gives me .

Sending healing hugs to you all x

[Hm50 in reply to BARBIE70]

That’s good to hear Thankyou xx

[NPmary]

Many docs don't follow tumor markers. Don't worry that you are out of options if ibrance and letrozole fail you there are many other options. If it's just tumor markers going up l wouldn't worry that much but of course you can't help but worry. Sorry! Wish you the best. Don't ever hesitate to get a second opinion or to switch docs. You deserve to be fully informed and receive compassionate, quality care ❤

[Hm50 in reply to NPmary]

Thankyou I appreciate it hope you are well xx

[Pachira]

My tumor markers were steadily rising but these last few months I switched to green smoothies and I’ve tried to watch my diet more. My markers came down a bit a few weeks ago, the first time in a year. The scans will tell more but our mind can play tricks with our symptoms. Diet and exercise is a good place to start though you might already have discovered that. Take careChris

[Hm50 in reply to Pachira]

Thankyou