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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Retroperitoneal Leiomyosarcoma part 2

110 replies

Earlandmrsgrey · 24/01/2026 09:02

The power of Mumsnet...I actually had a reasonable nights sleep!!

Work night out tonight. Bongo's Bingo in Clapham. Not sure what to expect but I wasn't going to turn it down. I'm hoping to find a good balance of doing stuff/doing nothing this year. I get so exhausted, but I don't want to spend the rest of my life on the sofa! This blasted cancer has at least resulted in the reconnection of some old school friendships. Every cloud... sometimes you just have to search a little deeper for the silver lining.

www.mumsnet.com/talk/cancer/5394978-likely-pancreatic-cancer-how-do-i-tell-my-mum-that-im-probably-dying-from-the-same-thing-that-killed-my-father?page=1

OP posts:
Thread gallery
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hourspassed · 25/02/2026 18:04

You’ve had a lot going on this week. I’m glad you’ve got some time away planned. Wishing you sunshine and calm x

TheBroonOneAndTheWhiteOne · 25/02/2026 18:07

It all sounds so exhausting.
I love alpacas! Enjoy them.

Damn those white van men.

chatgptsbestmate · 25/02/2026 18:56

Sending more love and angels. You're so strong ❤️

Earlandmrsgrey · 27/02/2026 21:02

@Agapornis
Thanks for the recommendation!! A colleague joined me for today's meeting with the trials nurse. Afterwards we had a lovely geeky nose around the many jars, slides, bones and bits of mouse. The moles are currently residing at an exhibition around the corner at the UCL library. Apparently there are only 17 of them in there!

Retroperitoneal Leiomyosarcoma part 2
OP posts:
Agapornis · 27/02/2026 22:15

Ooh I hadn't realised they moved - glad you found them and had a nice afternoon! There's also the Petrie museum (Egypt/Sudan), and an art museum. Oh and Jeremy Bentham, if you haven't been to see him yet. I enjoy the Grant the most though. https://www.ucl.ac.uk/museums-collections/

My dad's in a trial, different rare cancer. For him it has meant more checkups and a lot of regular reassurance (and about 6 months more life so far). Hope you get the stuff that works.

Museums and Collections

Discover UCL’s Grant Museum of Zoology, Petrie Museum of Egyptian and Sudanese Archaeology, UCL Art Museum and UCL Pathology Museum, other UCL collections and an exciting exhibitions and events calendar.

https://www.ucl.ac.uk/museums-collections

hourspassed · 28/02/2026 10:43

Thank the heavens for these curious, clever people and the money that finances these trials. Wishing you a good week ahead OP.

Lougle · 28/02/2026 21:35

I lost your thread. I am so sorry that you're facing this new chapter. I hope the trial gives you the very best treatment arm. Such a lot to process and weigh up, but the trial does sound like it has potential?

Muchtoomuchtodo · 01/03/2026 09:12

Hope the investigations are all going to plan @Earlandmrsgrey and some of those museums sound fascinating!

If you’re heading to West Wales this week, don’t forget your brolly and waterproof, though the sun might make an appearance midweek! Hope you have a lovely time xx

Gymnopediegivesmethewillies · 01/03/2026 20:28

Earlandmrsgrey · 27/02/2026 21:02

@Agapornis
Thanks for the recommendation!! A colleague joined me for today's meeting with the trials nurse. Afterwards we had a lovely geeky nose around the many jars, slides, bones and bits of mouse. The moles are currently residing at an exhibition around the corner at the UCL library. Apparently there are only 17 of them in there!

That looks like the worst ever prize at a church fete! What is the purpose? I’ve got to be honest when the PP said a jar of moles I thought it was the naevus type!

Earlandmrsgrey · 12/03/2026 11:27

It's been a busy couple of weeks. I am so glad that that I have had the opportunity to see so many of my friends and family. I've eaten out far too many times and consumed my body weight in cake and biscuits!

Pembrokeshire was glorious both in the rain and the sunshine and I even managed to dip my toes in the water at Aber Bach!! The daffodils were out, the birds were singing and the alpacas were as gorgeous as ever.

Next up was a quick trip over to the Isle of Wight with an old school friend. The weather was not so kind and for the entire weekend we could barely see 3 feet in front of our noses due to the mist. Walked and bounced along the springy mounds on Tennyson Down towards The Needles. Ambled along Compton Beach to see the dinosaur footprints and somehow walked up the hill to St Catherine's Oratory without getting lost in the dense fog. Enjoyed mooching around Carisbrooke Castle and seeing Charles I's undercrackers in a display cabinet!! Ironically I was sat under his portrait just a few weeks ago letting the news that the cancer had metastasised sink in.

Monday and Tuesday were spent in London as I had numerous appointments. The first was related to the trial I'm on. Had to fill out a health questionnaire with one of the statements asking me about my quality of life for the previous week. I had to answer with a 10/10 as I had genuinely had the best time and had laughed so much. Then PET scan and Echocardiogram on the Tuesday. Obviously we used our time wisely and went to see The Mousetrap...I do love an Agatha Christie. Even named my stoma after her.

Yesterday I had all my long, thick, curly hair chopped off. Doxorubicin isn't going to be pleasant and it will likely come out. My family are delighted about this as unfortunately I'm a shedder and despite always tying it back someone will always find a hair of mine in their food. The family joke is that if ever the police get their hands on my DNA then I'll be implicated in many a crime as surely my hair has been found at crime scenes all over the planet!
A few years ago we had to chop down a diseased tree in our back garden and to my delight it contained an old nest lined with my hair. Therefore I have kept a chunk of my hair and I intend to leave a few strands here and there along the paths and trails I regularly frequent. These same paths and trails are the ones that I would eventually like my ashes to end up scattered upon. Just a little bit of me here and there.
Might also keep the odd strand back for a lasagna or a curry!

Beginning to feel short of breath and have stabbing pains around the liver. Need to get this chemo started now. I'll find out tomorrow which arm of the trial I am on and whether or not I'll even be given the trial drug. Then it all starts on Monday.

Oh, and my BIL who works for Cadbury left an 8kg box of chocolate buttons on our doorstep.

Retroperitoneal Leiomyosarcoma part 2
Retroperitoneal Leiomyosarcoma part 2
Retroperitoneal Leiomyosarcoma part 2
Retroperitoneal Leiomyosarcoma part 2
Retroperitoneal Leiomyosarcoma part 2
OP posts:
Beachtastic · 12/03/2026 12:06

I had to answer with a 10/10 as I had genuinely had the best time and had laughed so much

That's so good to hear, OP, quality of life is the name of the game 💗

Love that your hair is providing such luxurious comfort for the local birds!

A paddle at Aber Bach is just what the doctor ordered. That's my happy place - I love the bit where the river trickles over the pebbles into the sea. There are so many anemones in the rock pools around the cliffs. A vivid childhood memory is of strolling through the valley past that lovely little house, in warm sunshine, and feeling that everything was good in my world.

Long may you enjoy a 10/10. Much love to you xxx

Iamnotalemming · 12/03/2026 12:28

Kudos to your BIL!
So pleased to hear about your trips, they sound glorious. Flowers

hourspassed · 12/03/2026 12:34

Ah the Isle of Wight, just over the Solent from where I live. Lovely to hear the peace and happy memories in your update. Hope the news tomorrow is what you are hoping for. I echo the pp - long may you enjoy your 10/10 - it's all any of us can ask for xx

badhairmum · 12/03/2026 17:43

I was about to say, "nothing better than a lovely walk" and then I read that there are 8kg boxes of chocolate buttons. Glad you've had such good trips.

Lougle · 12/03/2026 19:01

@Earlandmrsgrey Those pictures are lovely. you sound like you've got all your ducks in a row. I hope you get the trial drug arm (I assume that's what you want?). I've always imagined that if I needed chemo I'd get my hair chopped off at the earliest opportunity - get in there first!.

Muchtoomuchtodo · 12/03/2026 20:21

Fancy being responsible for making birds nests comfy and cosy! That’s fab.

Your pictures are glorious - glad to hear it’s made life 10/10. I hope your batteries are recharged ready for the next onslaught, and the chocolate buttons keep them topped up. What a great BIL you’ve got!

IVbumble · 13/03/2026 07:54

Doxorubicin is hard but the slower they administer it the less the side effects are & they can also give more drugs should you feel sick or have any adverse reactions. It's important to tell them straight away about any reactions so that they have the best chance of addressing this for you.
Side effects often lessen as your body becomes more used to it.
We're all thinking of you OP.

TheBroonOneAndTheWhiteOne · 14/03/2026 00:21

badhairmum · 12/03/2026 17:43

I was about to say, "nothing better than a lovely walk" and then I read that there are 8kg boxes of chocolate buttons. Glad you've had such good trips.

Ooh I'd love one!

@Earlandmrsgrey all the best with the chemotherapy.
You sound so positive.

Pineapplecolada1 · 19/03/2026 01:27

Thinking of you xxx

Gymnopediegivesmethewillies · 19/03/2026 21:17

All the very best @Earlandmrsgrey. I hope all goes your way in the trial.

I love the sound of your hair! Enjoy your chocolate buttons 🤤

Earlandmrsgrey · 21/03/2026 14:14

It's about time I check in again. Unfortunately my positivity died a terrible death last week when I got given the control arm of the study. I knew it would happen but was still floored by the news. I think I needed the tears to come though. It's just so frustrating that there is a drug out there which seems to be doing so much better than the one you are on. I know that so far I'm only looking at anecdotal evidence from a few fellow leiomyosarcoma sufferers but those in the States where the drug is already licenced for other cancers are now receiving it. Sometimes NICE are just far too slow in the UK but hopefully the passing of the Rare Cancers Bill will eventually speed things up for others down the line. I think you know it's not just anecdota when your team tell you how sorry they are that you got the control arm.

They still can't work out what's going on in my liver. It's either up to 7 patches of metastases or 2. Then there's the big 6-7cm shadow as well. I'm still waiting on the PET scan report for that one. There are 2 definite patches on my right lung too.

I guess so far that the good news is that the dox has been relatively kind to me. I mean, I've been asleep for the last 5 days but there's been no sickness, just a dry mouth and hideously thick mucus. Tried the cold cap, weirdly I found it pleasantly comfortable but it's too early to tell whether it will/has helped. I did have to make another journey up to London for blood tests (can't be done locally as part of the trial they get shipped straight to the US). Went with a friend and we did enjoy an Al fresco pizza in the March sunshine before I feel back asleep again on the train home!!

I have the house to myself today and have managed to summon up the energy to drag a big comfortable cushion onto a recliner. Might be here for some time. zzz, zzz, zzz

OP posts:
Lougle · 21/03/2026 15:22

@Earlandmrsgrey I'm gutted for you. I hope they treat you like an absolute princess for trekking up to London. Trials are stopped early sometimes when the results are very obvious though. I remember from my nurse training days that the Ramipril study was halted when early-ish results were obvious and they just put everyone on Ramipril.

Frillysweetpea · 21/03/2026 15:27

@Earlandmrsgrey So wish the trial allocation had gone in your favour. You're absolutely permitted those tears; it doesn't stop you being an amazing woman. Your lack of self pity is incredible and I really admire you.

WatieKatie · 21/03/2026 16:07

I’m so sorry to hear that you are on the control arm - you have been so positive and I’m sure I speak for everyone following this thread to say that we are all thinking of you.

I think I remember you saying about having private medical insurance. If so could you see if they would cover the cost of drug? It probably doesn’t work like this but thought it might be worth a try.

wishing you all the very best.

notapizzaeater · 21/03/2026 17:59

My DH was denied a drug on the NHS, our medical insurance approved it for us instead. Have you tried this route ?