Mandy from England - Dx 2015

[arojussi]

Brain ct just doesnt make sense to me. For brain mri is vay more accurate and does not have any radiation. For pelvis mri is as least as accurate as ct.

[Olga]

Jussi - you are correct on both counts.
The preference of the CT versus MRI is only based on the much lower cost of the CT versus MRI (the scan itself is much longer and it (probably) takes longer to read it).
UK health insurance is similar to Canada and Finland in a sense that everyone gets a government based health insurance of some sort. As the coverage for all is expensive, there are limitations - everything is done by the rules set by the guides. In UK where the salaries of the doctors and consultants are at the highest, the control over the other spending is the strictest, where everything is defined in details. We have already expressed our opinion that general sarcoma guidelines they use in UK that were authored by the top sarcoma drs incl. Pf.Judson, are not optimal for ASPS patients follow up as they are written for sarcomas as a group and make no exception for ASPS and other slow growing sarcomas. Things like trying to low exposure radiation dose or at least once a year brain scan (if there is no history of the brain mets , otherwise at least once in 6 months) to catch the brain mets early etc - they are often irrelevant for the fast growing aggressive sarcomas, by diff. reasons mostly because they progress so fast that the mets are found fast by their symptoms etc - people do not survive long enough to loose out due to the scans schedule. In ASPS it totally makes sense to care about the overall health, radiation exposure damage or try to catch mets small as there is usually a time and a way to treat the mets locally and we - our small community here - are pretty efficient in sharing the way to do it in a very advanced way. But once again - UK is a country that is trying to save money on the health care and this is their way to do that. in Canada there are other ways - although we usually succeed with getting the scans we need if we have a valid reason - the wait time is long and the reading time is 2 weeks or more, in Finland there are other tricks. If Mandy wants to have it optimal, she has to fight for the scans and go all the way to the top - Pf.Judson attended the ASPS conference in US this September and is perfectly aware of its slow growing nature and what can be done.

[Mandy]

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 my lungs and the disease is quite stable.

Unfortunately in April my chest CT indicated a spread to my scapula. I was quickly given a PET-MRI (A very unpleasant scan indeed!!) and luckily it hadn't spread to any other bone. They think it must have spread locally from my original tumour.

They surgically removed a part of my left scapula and some more muscle in May, I missed some University, but I am now all healed up and in my 3rd year and studying in Rome, Italy!

I had another chest CT in October that showed up as stable.

I feel extremely well, and fit, and happy at the moment. The decision to not go on Cediranib or another drug at the moment is one that I'm glad we've made. My next scan is in February so until then I'm planning on enjoying my time in Rome and hoping for stability for another while to come!

I've started a blog, a bit about my experiences with cancer, both physical and mental so if any of you would like to check it out that'd be great! I think we need more honest and personal information about ASPS out there on the internet. I've also been trying my best to spread awareness. In July, in the UK, we had a Sarcoma awareness week and I made multiple posts about it on social media and received lots of positive feedback. This month I'm also raising money for Cancer Research UK. I'm just trying my best to help as much as possible and also enjoy life whilst I have a little break from asps.

Regarding comments on Prof.Judson in the UK, he is now retired, unfortunately, but I have complete faith in my team in London, who have my best interests at heart.

Wishing all the best and love to you all. I hope to be slightly more active on here to help in any way! ciao for now!

xxxx

[Mandy]

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

[D.ap]

Hello Mandy
I’m sorry for the additional surgery
Was it a positive margin success ?
Was the pathology report positive ?
Without bone involvement ?
Thank you for including us with your news

I’m sorry but I couldn’t link into your blog.
Maybe repost?
Looking forward to a blog link
I so agree that we need to more transparent to a degree
Love
Debbie

[Mandy]

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:
https://www.maddiecowey.wixsite.com/blog

Xx

[MartinBube]

Hi Mandy,

Very happy with your stable results. Did you had any growth of the mets in the Lungs or they are still the same size as one year ago?

I have a similar situation where the have seen 2 spots 5mm on my first scan and they till this October are the same.

[Mandy]

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 many. Occassionally they've said more have popped up but this could be anything down to the scan.
Many are pinpoint and aren't seen as much of an issue in the present moment.

Hope this helps!
Xxxx

[Mandy]

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 - confirmed mets in lungs, slow growing
May 2017 - partial scapulectomy due to 2cm met in bone
2017/2018 - general stability in lungs
September 2018 - 2x lung mets in upper right lung removed by microwave ablation
2018/19 - stability
July 2020 - few lung mets growing, decision to try cediranib
September 2020 - started cediranib, 30mg/day
December 2020 - lung mets stable and some shrunk (some by half!!) biggest then around 8mm. 10+ in total seen on chest CT
At some point cediranib dosage was lowered due to side effects (mainly diarrhoea, stomach cramps, nausea).
Been on 20mg since Jan 2022. All scans since Sept 2020 have shown stability.

March 2022 - had routine chest CT
24th May 2022 - found out 3 nodules in lower left lung have grown by around 2mm each. I have had a repeat CT and am awaiting date for a full body PET-CT.

Surgery considered but not top choice.

Ablation not possible apparently as too deep.

I'm devastated cediranib isn't working.

Suggested treatment is Nivolumab and ipilumimab. Does anybody know about this? Unsure yet as have to wait on next scan results and my consultant will have to apply for compassionate use of the drugs. I've read it is a TKI combo with immuno. I'm scared to start IV drugs.

I am at UCLH in London and under the care of Dr Rachel Windsor at the moment but will be switching oncologists when I turn 25 in August.

Any thoughts would be greatly appreciated and if anyone has experience with these kinds of drugs I'd love to chat.

Maddie
Xx

[D.ap]

Hello Maddie ,

Our son has been on nivolumab but not ipilumimab (yervoy)
Why are the docs suggesting such an aggressive Med treatment for just lung tumors below 1cm?
Are they performing brain and pelvic scans as well ? Bone scans ?
No other tumors being seen ?
I wonder why the cedirinib was reduced to 20mg s…
And if an increase would reduce the lung tumors once again as it did when you first began cedirinib..

[Mandy]

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, nausea. Not sure how it'd go increasing it again but I'd definitely try.

How was he on Nivolumab??

[D.ap]

Hi Maddie ,

Josh did really well with the side affects.
Low thyroid which resolved within a six months time and arthritis, which he still has a degree of the symptoms
https://cureasps.org/forum/viewtopic.php?f=82&t=1297

The yervoy is quite hard on most people .

[Olga]

Hi Mandy,
Ivan was on another ICI (immune checkpoint inhibitor type of drugs such as nivolumab) drug pembrolizumab, for two years, it worked well for him. It does not seem to be any advantage for ASPS patients to have the combo with the addition of ipilumimab.
Please find and consult an interventional radiologist skilled in cryoablation as it can be used in locations when heat based ablations, like RFA, can not be used due to proximity to structures that can be damaged by the heat. Our community experience is very good with cryo, but you need someone who is very skilled, as I remember there are some skilled drs in UK but you need to look for them.

[Mandy]

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 sarcoma I do sometimes worry they treat you with a blanket treatment plan as opposed to doing as in-depth research.

I also want to ask about increasing cediranib again. But, I am worried about going back up to 30mg as 20mg has been much more manageable, but even with 20mg I have been having almost daily diarrhoea. It's quite exhausting.

[Mandy]

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 a group and range from 2mm-7mm. They have popped up since the last scan which was in March.

My oncologist has suggested a clinical trial: immunosarc. It uses sunitinib with nivolumab. She wants me to consider it. It would take at least 6-8 weeks to start the trial so I will continue to take cediranib for now.

In the meantime I have asked whether we can increase the cediranib back up to 30mg to see if it makes a difference. I think she has agreed but waiting to hear from the pharmacist. Obviously depends on toxicity - but surely the clinical trial will have worse side effects than cediranib?

I am worried though that the cells have just gained resistance, due to decreasing the cediranib dose too soon, so even raising the dose again won't work. But worth a shot.

I have heard good things about Nivolumab, but my concern is the intensity; having infusions every 2 weeks; and that they want a biopsy of the tumour site. Does anyone know about lung biopsies with ASPS? I don't want to risk anything and the idea terrifies me.

I had a PET scan yesterday and I am hoping it has not spread elsewhere.

Thank you :)