Hello all. I often write a post when we need help or are scared by latest development. Today I'm just sharing some hope and good news.
Susie has mets to her brain. One cystic lesion was 5cm at the back of her brain (I'll attach pictures). We were ready for brain surgery on the 9th to remove it. It had actually shrunk from 5cm to 4cm in 7 weeks. We agreed to do an MRI before surgery. The lesion is now 2.7cm! That's shrunk 1.3cm in just 3 weeks! The surgeon actually used the word Miraculous! We cancelled surgery and are now hoping it shrinks more (even disappears) down to 2cm at which point they will consider SRS on the 4/5 brain lesions.
Susie is taking oral Capecitabine, cannabis oil over 1g per day, Fenben and Menben (all if these cross the blood brain barrier do should help and seem to be!) Plus a host of supplements.
So we are cleared to spend a Xmas together as a little family. Susie is currently very well, almost symptom free, long may that continue! We are still worried about progression in her chest but we will cross that bridge when we come to it (to quote the Queen mother in recently watched TV show "The Crown", "One hurdle at a time dear!")
Best regards and wishes to everyone!
Leo, Susie, Albert and Edith
(Image on right 3 weeks ago, image on the left taken on the 9th!)
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Winner123
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Such good news for all four of you!! Thanks for sharing it, Leo! Do enjoy your Christmas in the beautiful UK. Another woman on this forum indicated that you recently had some snow so you may be having a white one much as we are in Saskatchewan😆.
Just tonight, I replied to a post from Eduardo in Brazil. He too seems to be a loving, concerned husband as you are. You two may have much in common.
Hey Cindy , as long as my little family are with me, I love Xmas (and spring, summer holidays, autumn leaves and winter rain!).As Susie suspected she'd be having surgery, the house is decorated and had been since mid November, all the Xmas shopping is done so we are free to enjoy the holidays. I'm closing my little business on the 16th do we have a good two weeks together! Very much looking forward to it! I had to Google Saskatchewan, I thought you'd made it up! Canada, lovely. We would love to go snowboarding there sometime, looks lovely.
Wow wow wow , I am so pleased for you all. That’s what it’s about Hope and love and positivity and there is plenty of that in your family by the sounds of it. Your Christmas is going to be the best ever. Love and best wishes from South Shields UK.Debra xxx😍
Thanks for sharing such wonderful news. Hope you all have a wonderful Christmas,
Incidentally, my Instagram friend with brain mets had cyber knife at the Royal Marsden last week. It appears to have gone very well, Yesterday, they celebrated their son’s 4th birthday with a lovely children’s party!
Such great news, Leo! And just in time for the holidays! Susie really has had quite an incredible turnaround from some of your earlier posts just a few months ago—so happy for your whole family!
As a side note, my wife also just started Xeloda/cape this week as well, as her third line treatment. We are hoping for great results as Susie and others on the site have experienced (and also hoping to dodge some of the potential side effects!) So pleased that Susie is doing so well on her combination of meds. We are nearly five years into this journey, so have much for which to be thankful this holiday season.
Enjoy the holidays and thanks for sharing this great update,
Hi Dave. Best of luck with Cape! Try putting the tablets into empty pill caps, size 00, we do this and feel it's stopped some stomach issues. Also udderly cream for hands and feet as recommended by lots on this site. Dr Keith Block suggest take two pills in the morning and the rest just before bed. His research shows less toxicity during the night, he's done a lot of research on circadian rhythm.
May I ask what was first and second lines for your wife? Is she triple negative? This is Susie's second line, I'd like to know which one we've missed, just in case!
Thanks for the good suggestions, Leo! My wife is ER/PR+, HER2- like many of the women on this site. She had a good run for 3.5 years on Ibrance and Letrozole after de novo DX in March 2017. After some progression last year she was fortunate to get into one of the clinical trials for Amcenestrant, one of the new oral SERDs (sort of like oral Faslodex) and was tolerating it quite well for 13 months, but has now seen some progression, so has switched to Xeloda. Fingers crossed we can avoid some of the side effects, so appreciate your suggestions!
Take care and have a great Christmas! So happy for you and your family! We just became grandparents this summer, so this will be a special Christmas for us as well!
Hi Marge, I'm really sorry, this post was from last year. Susie passed away on the 31st July 2022. She had SRS on the brain tumors but the progression in her upper lungs was just too much to fight. She passed away peaceful with me, her mom and dad at her side, holding her hands. Good luck to you and everyone with your own journey. Susie is resting peaceful now. Xxx ❤️
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