My mum’s breast cancer came back a month ago - it’s stage 4 and it’s metastasised to her bones. Her life expectancy is about 6 months without treatment. She has triple negative breast cancer which is rarer, more aggressive and significantly harder to treat than the more common hormone-responsive breast cancers.
There’s a new immunotherapy drug, pembrolizumab, which is effective on advanced triple negative breast cancer when given alongside standard chemotherapy. But it costs £3000 per treatment and she needs 18 rounds of it. Her oncologist applied for funding and got it!
After 6 months of treatment my mum should have 23 months of “progression free survival” compared to 16 months if she had chemo alone. She’s only 57 so every extra day I can have my mum in life is truly a gift. I’m so so grateful for our NHS.
That’s awesome. *mab drugs are fucking nuts and have so many uses. Mouse/human chimaeric antibodies in the case of hers.
Glad they got her funding and you get more time.
I have lupus and my consultants are going to try me on biologics/mabs - hydroxychloroquine damaged my eyesight and methotrexate damaged my liver. I’m pretty excited to try it!
Thank you for your kind words 🙂
Jesus. Rheumatoid Arthritis here. I just got back on methotrexate because it was fucking my liver. I’m hoping my enzymes don’t climb again. Hcq makes me lactose intolerant. Antibody treatments are nice. Stay strong and take care of yourself - finding the right mix takes time.
It’s been 15 years, but my lupus is stubborn - it’s never gone into remission. HCQ, MTX, prednisolone and a boat load of painkillers worked well enough for a long time, but my disease activity is flaring badly atm. Probably the stress of my mums diagnosis, - it happened last time too. My dad has RA. He’s been on anti-TNF for donkey years now - he was in the original clinical study! It enabled him to work a physical job for 20 years when he couldn’t do his shirt up or bend to put his shoes on before. Magical medicines - absolutely wank diseases. I wish you many more good days than bad and optimal LFTs!
That’s fantastic news - “success” hardly does it justice. You’ll treasure that extra time you have together for the rest of your life.
Thank you! I was absolutely devastated when the cancer first came back and we realised how little time she had left. An extra 7 months is incredible! Now I’m trying to convince her to take my hair for a wig. It will make her so much happier when she loses hers again.
Yes, do what you can do make your extra time as special as possible and if a wig helps, go for it. Remember to also use this time wisely and document everything you can - get videos of her telling her old stories, family memories, jokes or songs. I’d also consider getting a swab for genetic genealogy purposes (although it may be the doctors have offered a DNA test if there’s a genetic component - she’s very young for this and at least one friend who went through cancer recently found it was inheritable).
I lost my Mum in a car crash when I was 27 and you lose so much - her grandkids largely know her from photos and the stories we tell. Unfortunately, those don’t really capture her personality and spirit like a video would. My Dad died during lockdown and it was 4 days, start to finish, and for most of the time he was on morphine so there was no real way to properly talk to him or even for anyone in the wider family to say their goodbyes. So any extra time you have is really important, make good use of it.
Oh gosh, you’ve lost so much. I’m so sorry. Thank you for your advice, I appreciate it. We’re not the kinda of family that take lots of photos and never videos, but I’d already decided to capture as much of our remaining interactions as I could.
Have you heard of death cleaning? I’d never heard of the term before I came across this article by chance a few days ago. My mum has already started death cleaning without knowing it and although it felt weird and morbid at first, it’s honestly it’s been great. Every time I go over she gives me something of hers that she doesn’t use anymore - clothes, shoes, even body cream. With each gift we talk about when she got it or a special time she wore it. We’re making more memories by go over old memories, it’s beautiful. And I’ve made myself cry again…
Unfortunately she does carry the BRCA1 gene and I’ve already had stage one cervical cancer (now cured, thankfully). I’ve been referred to the cancer genetics clinic where I live, they’ll take my DNA in November and if I have it too we’ll discuss preventative mastectomies/hysterectomy then. I’m in my 30s. It’s a bit scary tbh.
She’s refused to take my hair. I lost mine when I first had chemo in my 20s and it was pretty traumatic. She said seeing me with no hair just so she can have it would make her even sadder. She’s just going to order the same NHS wig she had last time. My partners has the thickest hair that grows incredibly quickly. He offered to grow his hair out and donate it to her but she declined because she doesn’t like the colour 😅
I’m truly sorry you’ve lost both your mum and dad - and that you didn’t get “advanced warning” as I have. Do you have anything handwritten by your parents? I’m an embroidery artist. If you’d like me to make something with your parents writing on it (maybe for the children’s bedrooms?) I’d be more than happy to make it for you. Send me a DM if you’d like to do that.
Thank you again for your kindness x
