Hoping you are as well as can be. 10 days ago I finished WBRT. I was diagnosed with progression to brain in March this year after a year previously being diagnosed with lung, liver and low volume bone mets. I'm surprised that I managed to dodge the radiotherapy for 7/8 months!
I have been on 3 weekly kadcyla infusions since end of march with very few side effects. It was hoped as it has been anecdotally shown to cross the blood brain barrier that this would shrink some of the 'innumerable' mets, it did show stability on one scan in July but slight progress since then, hence the radiotherapy now.
Anyway just to update that I'm now being gradually weaned off dexamethasone, I feel well and am doing my 'every day' currently.
I did have the tumour swelling after few days and had a tight band in my head but I upped steroids and it sorted it out.
So sorry to hear about all the changes and treatments you have been going through. I'd like to send you lots of love and really hope that the radiation will help. Thinking of you and as you say doing every day which is the best you can do. Sending a big hug to you today and always xx
Its good to hear from someone like me who is on kadcyla every 3 weeks and not having many side effects. I too have had brain mets identified this year. I was treated with Gamma knife.
Kadcyla can help with brain Mets but is not as effective there as in other parts of the body due to the blood/brain barrier.
Gamma knife is the ultimate treatment for brain mets though there are restrictions on how many mets and overall size. I guess you may be in this category as you say you have numerous mets.
Hi, yes I was hoping to get away with having Gamma but like you say there are restrictions on overall volume and number of mets. I am wondering how soon they scan after the radiotherapy?
I am learning to take the diagnosis, growing, healing tumors one day at a time. I have to say I am getting better. I started becoming quite over thinker as a teenager. Relearning to take things as they come. How is your liver and lungs? Success with some healing?
Keep on moving forward, beautiful positive attitude and loving yourself ❤
Hello Caroline; So glad you have that treatment behind you. It is easy to write but not easy to do and you are to be congratulated for managing so well. So happy for you that you are tolerating your normal treatment so well. Wishing you great scan results and now you can concentrate on the Christmas holidays. All the best to you.
Hub Caroline, happy to hear that the WBRT is behind you. I had 1 session for a cerebellum lesion and it wasn’t easy, so I can only imagine how more difficult 10 session of WB are. Hope that it’ll be effective and you’ll recover without any side effects.
That's alot to go thru in such a short time! I hope the WBR did it's job and killed off those brain mets, as they deserve. I also hope that you be able to do some nice things for yourself, and pamper yourself! Sending love and prayers....................Pam
Hi I had a similar experience. Mbc Brain mets and then had stereotactic radiation to the two spots which were successful . Went on kadcyla and next scan showed too many to count so it definitely didn’t cross blood brain barrier for me. Had whole brain radiation and got rid of them all and went on tukysa about a year ago and brain scans are still clear 🙏🏻 Wishing you best of luck !!
Hi, thank you for reply. I'm seeing more and more similar stories to yours on different forums etc...regarding the stereotactic radiotherapy, I know someone who had it 'successfully ' earlier in year and has now progressed so is now going to have WBRT. I wish you continued clear scans x
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