Mandy from England - Dx 2015

[D.ap]

Hi Maddie,

Were you able to consult anyone about the cyroblation?
Our son had great success with nivolumab ( Opdivo ) and I feel that an ablation prior to his embarking on Opdivo , was a big reason to his great success. It’s referred to as in situ ablation.

https://pubmed.ncbi.nlm.nih.gov/15173017/

Ivan and Olga have studied this procedure extensively.
Ask your doctors about incorporating and or performing an ablation prior to and or during the trial ? If it’s a possibility with the rules of the trial .

Let us know how the PET turns out.

[Olga]

Hi Mamdy,
is it really necessary to get nivolumab as a part of the combo/clinical trial? It shows good results in ASPS along with another drug of the same immunotherapy group pembrolizumab. The cluster of mets can be also cryoablated as Deb said and it is a relatively easy for the patient if the dr has sufficient experience with the cryo.

[Mandy]

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 'cluster' of about 3cm in right upper lung, along track where I'd had an ablation in Sept 2018.
June 2022 - PET scan - activity in upper right lung
July 2022 - started enrolment into Immunosarc trial. Took last cediranib dose on 13th July. Had baseline scans and screening for trial including brain, chest, abdomen and pelvis CT scans.
Yesterday - Was told I was stable, the 'cluster' in upper right has actually shrunk a bit. I will not be enrolled on clinical trial. I will restart cediranib next week.
Thoughts?
My head is completely screwed up.
Is this a normal way for ASPS to behave?
Thanks guys ❤

[Mandy]

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.

[D.ap]

Hi Maddie,

Our family has been dealing with ct scans showing clusters since 2020. 2 in the lower and upper left lung and 1 in the upper right lung . All were biopsied to pronounce them to NOT be ASPS.

I’ve speculated that Joshua’s liver ablations and his surgery has somehow been performed around those CT’s showing inflammation/“nodular consolidations “ as reported on the radiologist report .
I’ve also noted that a flu shot was as well as his COVID vaccines were scheduled around the same time as the inflammation had shown up .

His left side has resolved but his one right side remains . We are watching for fever pain etc , as ASPS has been ruled out at this time as well as fungal infection. We are thinking there is a degree of asymtomatic bacteria involved. It’s being shown as 2cms.

Inflammation in the lungs can have lots of causes , infection and cancer are at the top of the list . In our case we had to be alerted to the possibility of autoimmune issues ie pneumonitis , as we are on Keytruda.
It’s up to us as patients to advocate for our care to try and keep ahead of any possible tumor related issues . Ie growth from a tumor .

I wonder if the radiologist felt the scan showed something other than ASPS? By the shape of the nodules ?
Were you having any other symptoms that correlated with that time frame ?
Josh had minor shooting pains .

[Mandy]

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, but I don't understand how PET scans work, surely they only light up active cancer cells?

Also I noted an area of consolidation on a scan report from December 2020. This was in Upper right lung. So same place there is a cluster now. So I am keen for them to compare those scans to the ones I've had recently.

I just don't want to be back on cediranib if it isn't doing anything. It's hard to know what to do.

I also noted that the report from March said the 'largest is still only 12mm', but when I started cediranib they shrunk to 7-8mm max. So has one potentially grown 4mm or more? I need to ask this on Monday but suspect she won't have the answers... And I know measurements can be inaccurate

[D.ap]

Hi Maddie
PET scans will show inflammation as well. Like old fractures in bones as well as any other metabolic activities.
Also it would show if cediranib was reaching and chemically active in that area . It’s just one tool of many for doctors to use , is my understanding.

The tracer will collect in areas of higher chemical activity, which is helpful because certain tissues of the body, and certain diseases, have a higher level of chemical activity. These areas of disease will show up as bright spots on the PET scan.

https://www.healthline.com/health/pet-scan

The scan can measure blood flow, oxygen use, how your body uses sugar, and much more.


Ask if there was any sign of the right side
upper consolidation in your March CT’s .
Are you getting all your scans performed at the same facility?
Did you lower then increase your dose late in 2021?

Also if you are wanting to not return to cediranib, I’d schedule a consult with your oncologist to discuss that idea as well

[Olga]

Its a very good news apparently - you were scanned intensively and no new metastatic sites are found, and the cluster is shrinking.
Its unlikely that you would be able to get all the scans if not for the clinical trial preparation, good to know and to have a clean base line scans for the future.
Perhaps the ablated area recurred (Ivan had that before), and cediranib took care of it but not instantaneously. When ASPS mets grow, in the beginning they have an insufficient blood supply (this is why when they are small they always grow very slowly and they even say that small ASPS mets growth is angiogenesis independent) so there was no target for cediranib, but then they grew a bit, cediranib started to work, its all good.

What about the 2 nodules in the low left lung growing (2mm)? Did they report what happened to them?

[Mandy]

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 chest CT on 15th July 2022 to those 6 months previously, but not enough to class as progression, they are all still quite small (I believe biggest is 12mm). I had stopped cediranib (was on 20mgs) in July as I was preparing to go on a clinical trial. I was rejected for clinical trial due to scan results being stable, but I did not restart cediranib for 2 months as my liver ALT levels were high - I am annoyed about this delay, as it was obvious my liver was just accounting for the sudden stoppage of cediranib, but there's nothing I can do about that now.

I had my follow up chest CT today to see how the lung mets are doing.

Since restarting cediranib at 30mgs I have been experiencing a lot of diarrhoea, almost every day, for example yesterday I had diarrhoea through the night between 4am and 6am, and then again at 1pm, 2pm, 3pm... Bloods today have indicated I'm a little bit dehydrated but not too bad, I am trying to drink lots of fluids (more than usual). Other issue is my TSH levels are high - November they were 7.41, December 15th 8.48 and today TSH is 14.62, but my T4 is fine so they are just going to continue monitoring it...

Feeling very nervous for my scan results, honestly just want to escape.

Otherwise I am well, working full-time, cycling to work 2-3 times a week and going to the gym 1-2 times a week and going out, seeing friends still very frequently. Being able to lead a 'normal' and joy-packed healthy life is the most important thing. Really hoping scan results are good as I am currently planning a 3 week trip to Australia in April and I want to be able to go and enjoy it!!

[D.ap]

Hi Maddie
Good to hear from you.
Be sure and ask about the 2 lower lung tumors Olga inquired about back in august of last year . Hi

What about the 2 nodules in the low left lung growing (2mm)? Did they report what happened to them?

Is your thyroid causing symptoms? Weight gain tired etc?
Olga posted an article on how with TKIs the thyroid being infiltrated and showing varying levels of fluctuations is a good sign the tumors are being reached at a central level .

https://cureasps.org/forum/viewtopic.php?p=923#p923

Looking forward to hearing of your scan results soon .
Ps it looks like you will need to change your repost on the RE: “Maddie” until we can figure out how to change it on your profile.☺️
You can go into your profile and put Maddie as your signature.
I do know that much.

[Mandy]

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 shrink.

I don't think I am having any hypothyroid symptoms. I do feel tired, but I wouldn't describe it as fatigue, though it can come in waves. No noticeable weight gain. My voice can be very hoarse at times but I have read dysphonia can be a cediranib side effect. My periods seemed to have stopped or paused, as I used to have one each month (not totally regular but never been this long between cycles). I am currently on day 81 of my menstrual cycle where they normally range from about 25-36 days. I have wondered why this is - could be thyroid? I haven't felt any more stressed than usual, I haven't lost weight, I am eating and living as I usually do. I am hoping it will come back soon and get back to normal... Of course, I have done a pregnancy test (or 2) and I'm definitely not pregnant!!

I hope they'll report on all of the nodules but I will definitely ask about the ones that seemed to have been growing.

Thanks as always

Maddie :)

[D.ap]

Hi again Maddie

The lack of regular periods is called Amenorrhea.
It obviously happens in pregnancy for 9 months but also could be from your thyroid issues
Again a discussion that Olga started back in 2014.😀


https://cureasps.org/forum/viewtopic.php?p=7286#p7286
It appears that tumors are suppressed as well when this phenomenon is present ?
It will be interesting to hear of the scan reports.

[Mandy]

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 be irregular. I do hope they'll return by themselves and get back to normal as I don't like thinking my body is struggling!!

[D.ap]

Maddie
On another note , what were your liver ALT levels determined to be when they were high ?

[Mandy]

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.