Lovely sunny day here in the UK. So yesterdays meeting on the back of MRI discovering brain mets....
I went with my husband, we sat with oncologist for over an hour, I looked at the scan image, the first time since being diagnosed with MBC last year that I've wanted to view any, dont know why I haven't before now wasn't so bad.
So i have multiple dots mostly very small spread through brain, none of which are irritating the surrounding brain tissue hence why I feel well no side effects apart from tinnitus which he isn't convinced that the mets are responsible for.
WBRT is an option but I can hold off for now as I say, no side effects yet. Kadcyla is my next line as its known to cross the blood brain barrier and has shown to shrink tumours in the brain. I can say yes to this and be on that in next 2 weeks but also hes mentioned clinical trials with kadcyla and everyone on the trial gets that but then 50% also get tucatanib whilst the other 50% get a placebo and you won't know which group you in whilst on the trial but he said the tucatanib is a very promising exciting med. I live hundreds of miles from where these trials would take place but not an issue.
I've said I'm willing to go see these clinics and speak with them if they feel I meet their criteria before hand, I've got nothing to lose as the kadcyla with my onc is always on the table at this time.
My liver on recent CT, in one of the lesions it looks a bit plumper compared to January scan so he said nothing exciting there and lungs stable and bones so not all bad.
I'm feeling optimistic currently and would like to thank you for prayers and kind words on my previous post.
It sounds as if you have a lot of good options, and a wonderful, balanced intelligent attitude! What a relief for you to know there are many good roads, and for us, knowing you’re doing well!
Sending you hugs ,I have never looked at scan results either ,don’t know why maybe out of sight out of mind,best of luck with next treatment ,it’s not easy but ya have to keep going 🥰🥰🥰
You're right, it's not easy but you do indeed have to keep going. I've never felt prepared to see images before but theres something about the brain that I need to see for myself and see what I'm dealing with. X
I think you so brave and doing what is right for you looking at your scans .You’ve got a good onc ,wish I could see mine in person just phone calls then a letter !
Yes , a lovely sunny day here ... it sounds as if your onc has taken time to discuss all options . Where is the trial ? I am in the U.K. ( north ) and I too don’t ask to see scans ... just get a copy of the radiographers brief report from my GP.
Thanks for reply teddie, I'm up north, clinical trial would be london and is a phase 2 second line treatment regimen based trial. Just waiting to definitely hear back from my oncologist whether I'm suitable with brain mets x
It did!!! Everything shrunk, and my CEA has gone from 1,500 to 862 in 4 months on Xeloda. I was worried, because there was a new enlarged lymph node, but it turns out it was just defending me from my COVID vaccine, as a good lymph node should! A happy day! Thanks for asking. My oncologist even said she wanted to hug me! So I am relieved and happy.....
Thanks for the update. First off, I'm glad you were able to take your husband with you for support. At times such as these, it's important to be able to take a close family member or friend with us for support. It sounds like you have a lot of options. I wonder if the WBRT will be able to get rid of the brain metastases? As they are so small, I hope that is a possibility for you. It must be reassuring to know that you have more than one option available to you.
I asked to see my scans one time, and my oncologist let me see them. I wanted to see the spots on my spine.
Take care,
Sophie
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in reply to
Hi, yes it was a great comfort knowing my husband was there, it's only the second appointment he's been able to attend with me due to restrictions. WBRT would likes do a good job and I may have to pursue it first before a clinical trial will consider me as presently they wouldn't class the brain mets as being under control, makes sense.Hope you're doing ok Sophie x
It sounds like you have some good treatment options. I hope you are a good fit for the promising drugs trial if that’s the route you decide you want to go down. Would the trials be at the Royal Marsden?I’ve always seen my scan results on my oncologists computer right from diagnosis. I find it helpful. Of course that was pre Covid and I haven’t actually seen my onc for over a year now! Just telephone consultations. It is good to hear you got the time you needed with your onc. who does seems to have your back on this. Take care.
So pleased you have a number of options and sending positive vibes to you. You sound so positive that is so important. Sunny again in the UK today so njoy this sunny fresh air while it lasts. Planting my bulbs today in the garden and will be thinking of you while I do and say a prayer for us all while we wait to see the flowers next season.
My garden and back yard are my source of joy season to season . The number of times I have planted bulbs and vowed in my head “I Will see these flowers bloom “especially when I’ve had mixed news and it so helps me when I see them peeking through the soil.
Hi, yes you send like a woman after my own heart with the love of garden. We planted some primroses on monday, various colours and I'm looking forward to them blooming fully. X
Great. Glad you got such good news. Wishing you well if you join the trial. Nice to know there are promising drugs on the horizon. Thanks for the update.
It is amazing how knowing the worst of it takes so much of the anguish away. Your post sounds so positive. Well done! Am sending more prayers and good wishes for you.XXX OOO
Thank you for your message. I was diagnosed last April with MBC after my first run in with BC in 2015. Invasive ductal carcinoma. I am triple positive still.
Hi CarolineWhat a time of it you have had lately.
Good to hear that it is all going in a positive direction and you are being considered for a trial. Shame they aren’t doing it in Manchester!
I have never been able to look at my scans either as I think I would focus on those sites to much.
You have such a good strong and positive outlook, I am sure that is going to help you on your journey.
Hope your meds continue to work and you feel better. I was sooo surprised to note that your husband was able to go with you to the oncologist. Here in the US, the hospital has banned all visitors. I have been going alone since last July...it’s frightening to be alone getting bad news. However something else has happened...I tend to be more honest and can ask the really hard questions when I’m without my husband. I guess I didn’t want my husband to worry excessively ...but I do hope that vaccinations make a change in hospital protocol...Good luck to you...feel well!
Yes only in exceptional circumstances at least at my hospital or if you have poor mobility which I don't (not yet anyway, feel like I'm jinxing myself!).I'd asked on the phone whether I was to come alone and oncologist thought best to have another pair of ears taking on the info as there was a lot! X
I agree with the others here who have said that it sounds as though you have good options! If you get into the drug trial and have to travel to London, would you do that by train? I've visited England three times and twice relied on Britrail to get around and just loved it! That was a long time ago, tho, lol. I've not had brain mets myself but have known several women who have.....one friend went skiing less than a week after completing WBR, and did not stay on the easy trails, so very like her to be out there finding the most difficult ski sloops. I also met a woman with primary brain cancer who was in a trial at the University of Chicago a few years ago, where she had a cap that she wore and received periodic electrical current to the cancer spots. That trial was very promising, too, but I've not heard any more about it. There are so many options that are new since I was first diagnosed in 2004! I hope that you will have peace with your treatment decisions and do really well! (and my husband goes to important doc appts with me, too, whenever a change in treatment will be talked about. Useful to have the support and also a second pair of ears.......)
Thank you for the update Caroline. As you know I have been suffering from Tinnitus for the past few months and I shall use your diagnosis as an example when I speak to my Oncologist Wednesday. He was a little dismissive when I mentioned it to him and said it’s unlikely my medication is causing it. He suggested a hearing test what I duly did. There was nothing wrong there. Tomorrow I will have a phone conversation with my GP as she is more up to speed with Tinnitus. If she thinks I need a head scan she will push for it. Seems sometimes I have to go one step beyond my Oncologist and speak to my GP who forces the issue to him. I just wish I could have a face to face conversation with him. It’s far better than a crackly phone conversation. Take care and I hope all works well for you. Cheryl
Healing wishes, strength and support on this journey of discovery. It's true, this is a journey and any of us might wish to be taking in another way. And, it is what it is.Thank you for the update
I've been on kadcyla for a year and yes it does cross the blood brain barrier though I also had partial radiotherapy to the brain too just as I started kadcyla. (My brain mets on the Dura were situated all together).
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Got to see the oncologist
Barbs visit to oncologist today
