Cure Alveolar Soft Part Sarcoma International (iCureASPS)

High ALT levels were just caused by the break in cediranib - so my body just adjusting to the drug change. Went to 116 u/L, but back down to normal now.

Gah, will definitely be interesting to see scan results! Just read the 2014 discussion. She was pregnant and tumours progressed, then they stopped for a bit... not sure if there is any link there. Definitely hormone imbalance with the thyroid issue so probably it is that that's causing my periods to...

Thank you for the reply. Wow, I find the thyroid stuff so interesting, thank you for sharing! Who knows maybe it does bode well. My thyroid wasn't really affected from what I remember last time I was on 30mgs cediranib but when I was on this dose from September to December 2020, the nodules did shri...

I still can't change my name on here but it's Maddie, just an update that's not much of an update... I restarted Cediranib at 30mgs in September 2022, after they found the cluster in my right lung had shrunk and my scans showed stability. Some of the nodules had grown a tiny bit when comparing my ch...

I can't think of any correlation between the cluster showing up on May 24th and anything else going on. Also on June 15th it continued to show up/light up on PET scan. On June 15th I actually had COVID and didn't know, and had been coughing all day - so I imagine that may have shown inflammation, bu...

Consultant told me I am not a candidate for ablation/cryoablation. As the new cluster is in the same spot they ablated (microwave) previously, they are not willing to try it again.

I need advice. I can't believe what they told me yesterday. Lil timeline recap for you: Sept 2020 - started cediranib due to nodules in lungs growing Dec 2020 - nodules shrinking/stable March 2022 chest CT scan - showed 2 nodules in low left lung growing (2mm) 24 May 2022 chest CT scan - new 'cluste...

Hi all Advice needed. On Tuesday I found out that my Chest CT from 24th May shows that the 3 that had grown by 2mm each are stable, but there is a new 'cluster' of mets in my upper right lung. It is very close to the site on which I had a microwave ablation in 2018. There are apparently 5-6 mets in ...

Thank you. I am going to ask about cryoablation and do some research on anyone who does it in the UK. Interesting about the combination. I will enquire about that. Do you have any medical journals/research on this or is it from anecdotal reports? I'd love to show my consultant. As it is a rare sarco...

Is it aggressive? I'm not sure yet and will be asking lots of questions at my next appointment. I did wonder whether we could try increasing cediranib but I guess they're worried that if things keep growing then it's time wasted. Cediranib at 30mg was giving me really bad diarrhoea, stomach cramps, ...

Hi all. A long overdue update. It is Maddie by the way, I can't seem to change my name but originally put 'Mandy' for anonymity reasons. Not bothered now aha!! To summarise: Dxd Jan 2016, 3/4cm tumour in left shoulder, 1 small nodule in lung at diagnosis Jan 2016 - resection of tumour November 2016 ...

Hi MartinBlue, I have one slightly bigger lesion in my right lung that has grown a tiny bit and I think is about 8mm but they've said the growth is hardly worth noting, I think originally it was about 4mm. So in about 18months has grown only a few mm. I have other let's but they've never told me how...

Hi Debbie! The results from the surgery were positive - very good margins they said :) they had to remove a section of the bone but it didn't interfere with any joints so I have full function of my arm, and recovered relatively quickly! Oh no! Try this link maddiecowey.wixsite.com/blog Or this: http...

My blog is
https://www.wixsite.maddiecowey.com/blog
if anyone was interested!! (it's only 1 week old!!)
xxx

Dear all, Sorry that I haven't posted in a long time! Just a summary: All the additional scans I had came back clear, fortunately. We are now certain that the nodules in my lungs are ASPS, which was slightly devastating news last November, but as of yet (nearly a year on!), I've had no treatment on ...