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!)

@Earlandmrsgrey I love your owl and your living room! Your DH getting a tattoo made me laugh out loud, I can imagine the range of emotions you went through when he showed you 🤭.

I hope the side effects haven’t been as bad this time around . Fingers crossed that the mets shrink to nothing x

Hope you're feeling better after the last round.

Maybe these owlets will raise a smile.

This cycle is not going well.

The fatigue and bone pain for the first 7 days was off the scale compared to my first two rounds. The oral thrush is getting worse and worse despite the Nystatin. I've tried emailing my oncology team but in the end didn't wait for a response and took myself off to the GP. Weirdly my temperature was up at 37.8 which surprised me as apart from the oral thrush, yesterday was the first day that the rest of me felt fine (and I had stayed awake all day). He tried and failed to take blood from me a couple times which caused me to feel all dizzy and faint. Another round of blood pressure, O2, temp checks done and this time they're all fine?! Sends me home with some Fluconazole for the oral thrush but I'm not to start it for 24hrs to give the Nystatin a second chance. Read the enclosed info sheet for the Fluconazole and have decided to avoid it if I can...not that I think I could actually swallow that tablet at the moment anyway. It's huge and I can barely open my mouth as it is.

Temperature currently sitting at 37.4. Apart from the mouth I'm feeling fine. So confused. Really don't fancy a trip to A&E so it better come down.

Could you phone the oncology team instead?

Phone your consultant's medical secretary and ask for your consultant to call you back if you have not been given a phone number for the Oncology team.

Call Macmillan please

Are you okay @Earlandmrsgrey? I’ve been where you are, with docetaxol. Frankly, I told DP I wanted to die, I felt that ill.

I won’t teach you to suck eggs, but please seek medical help, if you aren’t getting better. Can you suck through a straw? Any cold liquids? ice lollies? Is it mucusitis you have, do you think? Be careful, it can affect the oesophagus (?) and cause infection in the body.

Sending you a hug from a fellow sarcoma MNetter 🥰

I've been admitted to my local hospital. Surprisingly A&E was quiet all night!! At one point I was one of only 2 patients.

Antibiotics every 6 hours and have started on the Fluconazole.

I'm in a little sideroom, staff are all lovely and food is going down. Just wish they had ice.

Here until at least tomorrow. I'm supposed to be doing the raku with my owl. My friend is going to have to do it for me which is both sad and lovely. I look forward to seeing what she's done with him.

You are in the best place. I hope the antibiotics do the trick and you are out and home soon, so you can see your lovely owl 🦉

Hello @Earlandmrsgrey just wanted you to know you were being thought about. Hope you are surviving the heat and they found some ice for you.

Discharged on Monday afternoon. Realised quite how unwell I had been feeling once I started to feel better! Was moved from the sideroom on a surgical ward to another on a medical ward at 10pm on the first night which was a little annoying. Staff were all lovely, food was pretty good. Coconut and jam sponge with custard might not be everyone's idea of a good dessert for 30 degrees heat but it was the first thing that I had found easy to swallow for over a week. My Ocado order tomorrow is therefore full of steamed puddings and custard ready for the next cycle.

On 'house arrest' now. It's 2020 all over again here...but we do have loo roll and I'm not into baking sourdough! Pottered around the garden for a bit but it's a bit too hot and bright for me and I'm worried about burning my head.

Hopefully my owl will be with me in the next few days. My wonderful friend decorated mine and had the pottery instructor do hers due to time constraints. I'm so touched that she would do that for me.

Back of the mouth still tastes iffy but I can swallow pain free now. Seeing the oncology sarcoma team on Monday and hopefully we can come up with a plan to at least try and keep the yeast at bay.

Die yeast die.

Oh you are brave and lovely OP, I wish I could reverse all this suffering for you.

Coconut and jam sponge with custard sounds divine.

Sorry it's all been so rough @Earlandmrsgrey . Glad to hear that you've got a little bit of improvement and you have your owl to look forward to.

How are you doing now @Earlandmrsgrey
I think about you a lot and I hope your mouth symptoms are getting easier.