Retroperitoneal Leiomyosarcoma part 2

[Earlandmrsgrey]

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

My owl lamp sends his best wishes.

@Earlandmrsgrey shrinkage?? That is bloody marvellous! Whooopppee 20000 times over! I know this sounds weird, but it gives me hope! I’m genuinely happy for you ( I know I don’t know you and all that) What treatment are you on? I’m currently hooked up to cycle 5 of Trabectedin.

I’ve always wanted to try out pottery. I think you have inspired me to give it a go! Your room looks gorgeous I agree.

Such good news 😊

@Enigma54 I had infusion 3 of 6 of Doxorubicin yesterday. It's not been combined with anything else as I was allocated the trial arm of the study. I guess we wait and see what they want to do, if anything, at the end of the course. I've come home with a huge bag of meds to try and deal with all the oral issues that I seem to get. I hope the Trabectedin continues to keep you stable and the side effects are manageable.

I can't recommend pottery enough. You get completely lost in it which is so therapeutic. I'm just waiting for my owl to get through the kiln. Even if bits fly off or he explodes completely I had a hoot making him!

@Earlandmrsgrey yes I found doxorubicin brutal to the mouth and docetaxol even more so. Mucositis is the pits, but I found nystatin quite effective in the end.

Is it leiomysarcoma you have been diagnosed with? Where do you receive your treatment? I have mine at The Christie, Manchester. The sarcoma clinic is beyond mad up there; waiting times exceeding 2+ hours after allocated appointment slot! I feel they just pluck a time out the air for us all.

How are you finding doxorubicin
( mouth issues aside) ? Did your hair go? Mine has started growing on Trabectedin. I resemble an electrocuted hedgehog most days ( hideous!)

I had to apply for ill health retirement which has broken me. Trying to put together a “ new normal” life is no easy task. People keep asking when chemo ends, it doesn’t I have to keep on saying.

I’m definitely going to give pottery a go, it sounds both fun and relaxing. I might look at the OU and see what courses they have on offer and maybe do some much needed decorating ( maybe ). 🤔

@Enigma54 It was a Retroperitoneal leiomyosarcoma. Finally diagnosed in August/September last year after months and months of going back to the GP. I was just eventually referred to UCLH. Blood tests there have always been incredibly efficient but everything else is hit and miss. I've only had my third chemo but they've all been delayed by over 2 hours. It didn't help that there was a broken down freight train on our way back yesterday. We ended up being stuck at the station one before ours for 'an indefinite amount of time.' Had a bit of a meltdown and ended up in a taxi!!! I hope your travelling time isn't to bad and that you at least can get there by car.

I have no hair and every morning I am picking what's left of my eyebrows and eyelashes out of my eyes. Unnecessarily painful and irritating. I'm okay with the no hair and am happy in hats, scarves and beanies.

@Earlandmrsgrey yes my travelling is doable by car, takes longer by train and tram. What happens when you finish the 6 cycles of doxorubicin? Will they just scan you regularly? I was happy in hats and beanies too. I did spend a small fortune on wigs at the beginning, but they were so hot and itchy, quite unbearable.

Hi @Enigma54 How are you tolerating Trabectedin? I also have metastatic leiomyosarcoma and started Trabectedin two weeks ago.

@Berlinlover Trabectedin isn’t too bad, a bit more tolerable than doxorubicin or docetaxol, they were brutal and didn’t work either! You don’t lose your hair on this chemo either.

What day is it?! I think I've been mostly asleep since Thursday afternoon! Horrible facial flushing with this cycle and the oral thrush is back but at least I have the meds to deal with it quickly this time.

@Enigma54 I never actually asked what happens next, part of me just doesn't want to know quite yet. According to the trials schedule I think I get another scan between cycles 4 and 5 (mid June). I guess the questions will come then.

@Earlandmrsgrey I was sure that yesterday was Friday, and I was really surprised to discover that it was actually Saturday.

So I've lost a day somewhere or other, and I can't even blame chemo.

Sympathy to you. And to @Enigma54

@Earlandmrsgrey yes, same here, scan on 29th May and bricking it, tbh.
I could sleep right through my chemo now, it makes me so tired. Defo sort the oral thrush out, it’s grim!

Solidarity to you all. @Berlinlover I hope Trabectedin is kind to you.

Today is most definitely Sunday and time for a coffee, which will no doubt taste weird ( thanks to chemo!)