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Markers up again

Hi ladies

My markers have gone up again and my oncologist said she’ll keep me on letrazole and Ibrance till next scan in 2 months

I’m so disheartened and feel the whole thing is a waste of time

Barb xx

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Hi Barb,

I'm sorry to hear you are feeling down. I have never had any mention of tumour markers from my oncologist, so she either doesn't check them or checks them and keeps her findings to herself (which I doubt; I'm sure she would say something). I just don't know, so can't comment on what importance oncologists place on them.

Please don't give up!

Take care and I hope you have a good evening,

Sophie x

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Barb,

How long have you been on Letrozole/Ibrance? I don’t know enough about treatment yet to comment but I hope they stabilize again

Sending hugs

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Six months..I thought I’d get longer

Barb xx

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Barb

Sorry I know how you feeling I am on the same condition my scan were inconclusive, my cancer markes are going up little by little, my oncologist stated that can change my medication but I decided to wait and I wil have another scan in February, you need to have a scan I do not know when did you have your last PET take care and God bless you

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Hi there

I’m due a scan in February..had one last month and no progression obvious and my pleural nodule has gone but she just seemed a bit worried about markers this time and spoke of changing the treatment..I’m just in a bad place today

I want nothing to do with Christmas and I have to buck up as my daughters and partners coming..I don’t want to worry them or spoil Christmas..very difficult..I’m going to see about some therapy as not dealing with this

Barb xx

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How are you feeling today ? Sorry Barb that you are having to go through this period of uncertainty and increased anxiety at this time of year . Let’s hope that the tumour markers are not a good indicator , like for many of us , but on the other hand , if it does eventually mean considering a change in meds, at least your onc is on top of things ! But don’t give up ! I know you would prefer not to , but maybe see If your GP can prescribe you something to get you through the next couple of months. I know it won’t be easy at Xmas but try to keep strong for your daughters as I’m sure they will be worried too. Hang in there , try to stay positive , keep yourself busy ! Sending you love x

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Thank you Teddie

I’ll try

Barb xx

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also I go to o doc the top breast cancer docs I. Country and he never takes them because they fluxuate too often and are not accurate of spread. He has been doing nothing but breast cancer oncology for 44 years. Plus it makes women crazy oftrn for no real reason. See if you can find 200 mg l theanine

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Hi

He seems to know about markers unreliability which has reassured me somewhat..it’s that little voice in my head that keeps talking!!.. I’m going to see someone in the new year for some therapy

All the best

Barb xx

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Barb

Please look up brad Yates on YouTube. Put in your feeling and tap alongwith him.

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It sucks to have to get up and fake it for the sake of others (l know, and l don't always do a great job at it) but it especially sucks for Christmas!

It doesn't really help when you are in the middle of it but eventually/some time soon you will be surprised by a joy (maybe riding your horse?).

It's great news that there was no progression on your last scan.

I'm sure you know there are reasons besides progression for markers to go up.

How cool that you are a dentist. I loved being a nurse practitioner, a little over a year ago l was an important , compassionate part of many people's lives.

Here for you and wishing you many good days, Mary.

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Hi mary

Sweet of you reply and make me feel better

My daughters pitched up today and have made me laugh..we’ve had some Prosecco and just caught up with stuff

I realise how important it is to be with people and not spend too much time alone

All the best

Barb xx

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You're welcome.

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Hang in there. We have to ! I hope you have a wonderful time with your family. Let everyone help and grocery stores have some catering, like cannolis for dessert!

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Thank you laura

They’re doing the cooking..I’m not much of a cook anyway!!

Barb xx

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Hi there

My scan has been moved forward to January 3rd now so at least I’ll get an answer about what’s going on if I’ll need a change of meds

My girls are home now and they’ve lifted my spirits

Barb xx

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Hi Barb. Now I know you are feeling low and disheartened at the moment but I want you to take a deep breath and look at the big picture. First and foremost your scan last month had great news. Honestly the tumor markers are always considered a very distant and often inaccurate indicator of progression by most oncologists. If your oncologist really thought that your drugs weren't working they would have changed your treatment right away.

Know that I certainly can relate to the constant worry and self doubt this disease causes in us but I really think you should stay positive and see what the next scans show. Take care.

Sandra

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Barb,

I remember my Onc telling me don’t be worried if the markers go up when I go on the Ibrance in the beginning. Maybe that’s why your Onc wasn’t to concerned. xo

Robin

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Sorry to hear. Mine have went up all year and i was supposed to be nead. Now i have bone progression. All the while i was on Verzenio. I know how u feel. Hope your scans are good anyways.

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Know how u feel! It’s like playing a game of roulette with your life as one never knows where the dice will fall! Just don’t give up! Dust yourself off ,keep busy , and don’t dwell on it. Best wishes to you .

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No! Never give up! If anything the only thing we really know is that this ride is like a rollercoaster! Stay on the ride and it will smooth out again. Hugs, love and prayers to you! Love, Marianne

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I agree with all of the above. I was told number and markers will go up and down sometimes before they get stable again. Another scan is always best. Try not to get into the holiday downers (I easier said than done). Put yourself on the back burner if you can for a bit and enjoy the company and the family. Wishing you all the best.

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Sorry to hear you are so down. These markers and scans all seem to be a case of living from one to the next (which, I suppose, is crazy). It seems to depend on the oncologist how they are viewed. Mine says she uses them more or less as a guide to indicate if I need a scan or not as they keep climbing but pretty slowly. She doesn't really go by markers alone when considering medication.

My current delight is - after almost 9 months of no meds and feeling fine the oncologist suddenly sent a script for letrozole. I don't have a problem with that though it did fail about 3 years ago! but it seems the medical scheme wants me to be on treatment so they can assess what treatment package I am allowed to have??? Does this sound Irish to anyone else. Anyway now I have the old head sweats again which I could do without during the current heatwave.

Smile on and hope you are feeling a bit better having slept on it.

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Thank you Izzy

Barb xx

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Wife numbers went up last two tests. She had pet and ct Wednesday and results came back stable. We were also worried, but our oncologist said numbers not primary concern, but should be watched. Scans are most important. I want her to have them every 6 months not yearly. Had to fight for that. I was concerned, but read on this site that many oncologists don’t trust numbers.

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Hi

I know that they can fluctuate but it’s just the whole worry thing..thanks for your reassurance

Barb xx

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Last time I was at the hospital my doctor said she would not worry if my markers went up in my next blood test - as others have said, they are not an especially reliable indicator of growth, if they were, we wouldn't have so many scans. I know it's stressful, the not-knowing, but the chances are there's nothing to worry about I reckon. When my markers shot up after I started ibrance, the onc said it was good to see what the tumour was doing and that it was reacting to the treatment... Hope you can get some R&R over the holiday x

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Hi there

I’ve been on Ibrance for 6 months and my markers fell at the 1st and 2nd months but now creeping up

Barb xx

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Call me crazy but tapping works!! you will be amazed what you find out and how much it helps. Sometimes you have to do it for 15 mins. until you get answers and feel better. I tap every morning in the shower now as part of my morning routine. I say different things through process. Also, it is basically like doing accupuncture on yourself. try it

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Thanks for that

Barb xx

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I don’t mean to scare you but my oncologist did that and I had it in the visceral fat around my stomach and by the time they found it I went into a visceral crisis and had to go on regular chemo.

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Do you have pain anywhere? Maybe you can request a CAT scan due to pain

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I had a scan last month..due another in February

Barb xx

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Can you get your scan sooner? Or maybe second opinion? Seems a long time to stay on these meds if they are not working.

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Hi

Getting a scan next month now

Barb xx

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I am so happy to hear that.

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At least I only have to worry for one month instead of two!!!

Barb xx

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And get on right treatment sooner or be relieved you are on right treatment. My prayers to you getting answers

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Me again

Had a girly day..bought a wedding dress for my daughter..she was so excited and we all had lunch out afterwards..the girls do cheer me up..need female company..I know my husband tries but it’s just not the same

Barb xx

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Barb that sounds like fun and I'm glad you were able to get out and enjoy some time with your daughters. When is your daughter getting married? That's certainly something to look forward to in the new year I presume.

I agree that being out with girl friends is helpful. I have only told 3 people about my diagnosis but they have all been wonderful. I have been out to lunches with each of them and after the initial enviable talk about my disease we have focused on normal girl talk which is very therapeutic.

Take care. Sandra

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Hi

I had to tell people due to having to stop working but I don’t want the whole world to know because people start treating me weird which I hate

Her wedding isn’t till September (which concerns me as I don’t know how I’ll be) but at least the dress is sorted!!

Barb xx

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I'm so sorry - sending a big hug and prayers. Your family loves you...in good times and bad. I'm so independent and private but over 24 years and now my 3rd time...Ive learned it's ok to lean on people - family, friends and others like this group. Hang in there ❤️

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Hi

I’m exactly the same..very independent and private

A year ago I was working part time as a dentist..extremely fit..riding my horse..yoga..not a care in the world and now cancer back after 24 years..not coping well but putting on a brave face in public but crying in private..it’s the uncertainty of it all..have many bone mets

However I made myself go to the stables this morning and had a steady ride (on painkillers) but it did make me feel better..I must also confess to drinking gin and smoking 3 cigarettes last night!!!..I gave those up over 30 years ago but I was in a hellish mood and thought what the hell im going to die anyway...I’m behaving today!!

Thank you for your post

Barb xx

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I feel that same discouragement when mine go up. My dr is big on: how you feel first, scan results 2nd, and markers last. Also, he says scan trumps markers every time. But I totally understand mind are still both in the 400s . I am so envious of the people who report theirs under 50!! I pray for under 100 !!!

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Hi there

Mine are between 100 and 170 at the moment..were over 1000 in May then dropped dramatically to just over 100 then gone up which is why I’m so disappointed..thank you for responding

Barb xx

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It does get frustrating doesn't it. I go today for bloodwork to check my tumor markers and already feel the anxiety. I go next week for my scans and already feel nervous about that. There are other options. The Ibrance and Letrozole didn't work for me and in fact the hormonal therapies unfortunately aren't working for me so I am now on a oral chemo called Xeloda. Sure pray its working, but my doctor says we have other options so try and stay hopeful.

Love, Kim

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Hi Kim

I’ve been told there are other options but I was coping quite well with Ibrance letrazole combo and I thought it would keep me going for longer

Barb xx

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I tolerated it quite well also so was bummed when I had to change. I know its discouraging but I guess one day at a time. Sometimes I get sick of hearing or saying that but it is true. My thoughts and prayers are with you.

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Barbara,

I am so sorry about your markers. My markers are unreliable. Saying prayers for you. Blessings, Hannah

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Barb,

How often do you have tumor markers checked? I know my oncologist said at my yearly in 2017 that I didn't need to have those done anymore. I insisted lets just do them one more time and sure enough they had started to move up after years of remission. She ordered PET scans but nothing ever showed up. Since the tumor markers kept going up monthly after that she kept ordering scans. The PET did detect an ovarian cyst so we decided to remove that as well as the ovary & Fallopian tube. Well, the pathology report came back MBC on the ovary and fallopian tube. They did another PET scan after surgery which came back clear. She then decided to start me on Ibrance & Letrozole as she told me you can have microscopic cancer cells that don't show up on the scans. After two months on drugs my tumor markers have dropped down. My recommendation is to keep a look out for any new symptoms and to be an advocate for yourself. Do what you feel is right for yourself.

Enjoy your holiday with your family they love you and deserve your love.

Mimi

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Hi mimi

I have them checked monthly ....after a dramatic drop at the start of treatment they have risen for the last three months...I did have a surgical procedure in October to cement a fractured vertebrae which could have accounted for the increase in October but the markers have continued to go up

I’m terrified now even though you ladies have tried to reassure me

Bay xx

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I am so sorry things are not going well 😞. I hope that your markers improve. As long as the scan shows good things than that will be good. Holding you in my heart.

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Thank you Sarcie

Barb xx

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