Sarah from Pakistan - Dx 2017

[Sarah Ti]

Thanks a lot everyone.So my MRI for brain and pelvic came out clear by grace of Allah.There isn't any reoccurence in surgical area.Though some seroma kind of thing is there but thankfully no tumor or reoccurence.Im currently on votrient,which is kind of roller coaster.Some days are good and some not.I have this constant diarrhea for which I take imodium sometimes.Whereas,acidity and nausea give me hard time.I do take medicines for it too.I don't know if someone else experience it or not but after 5 or max 6 days the acidity builds up so much and I end up vomiting which then relives me.This occurs either once a week or after 10 days but it does! Im also taking thyroid medicines as votrient has brought hypothyroidism for me.I have my CT chest scheduled this month too.

[Sarah Ti]

Yes Debbie,my primary was resected last year May with clear margins,was around some 7cms and report said vascular invasion was there too.Grade 2 also stated.My thyroid level has come to 24 from 52 and Im taking thyroid medicines.Hope you all are doing good:)

[D.ap]

Hi Sara

I’m sure sorry for your sickeness .
When you talk of thyroid levels , are you talking TSH levels are low? So you are hyperthyroid?
Also are you plenty hydrated ? Dehydration can cause you to feel sick and vomit.

[Sarah Ti]

Hello everyone,
Just had my CT Scan of chest and results came out to be little confusing.As per report's conclusion there is stability but the size of 3 mets have increased (5.2mm increased to 5.3mm),(1.4mm increased to 2.5mm) and (2.6mm to 2.9mm).The rest are stable,one met decreased.The surgeon saw the scan and told that the mets arent as solid as they were,few are faint and dense.He said that surgery isn't a good option for now.
This is something new for me and Im unable to understand that is this amount of increase not considered as a red flag? What is the criteria to access if medicines are really working or not and should be continued or discontinued?
Also this CT is done after 4 months.Currently on 800 mg Votrient

[D.ap]

Hello everyone,
Just had my CT Scan of chest and results came out to be little confusing.As per report's conclusion there is stability but the size of 3 mets have increased (5.2mm increased to 5.3mm),(1.4mm increased to 2.5mm) and (2.6mm to 2.9mm).The rest are stable,one met decreased.The surgeon saw the scan and told that the mets arent as solid as they were,few are faint and dense.He said that surgery isn't a good option for now.
This is something new for me and Im unable to understand that is this amount of increase not considered as a red flag? What is the criteria to access if medicines are really working or not and should be continued or discontinued?
Also this CT is done after 4 months.Currently on 800 mg Votrient

Hello Sarah
Did you mean 1.4 cm to 2.5cm? A year ago that was the size of your largerest ?
Usually a 20% or more increase is considered progression .
The remaining tumors maybe considered stable.


Are the other tumors mm’s then ?

[arojussi]

Unfortunately there is no clear consesensus of when medicine should be continued or stopped. Asps naturally grows very slowly, so even little growth most likely means that medicine hasnt stopped the growth and unfortunately resistance to pazopanib will almost certainly happen at some point.

[arojussi]

Best plan that I could come up is: control current lung mets with ablations and try to find immunotherapy trial. Of course you can try getting immunotherapy with compassionate use also. As immunotherapy is still experimental most people only use it as a last resort. We know immunotherapy works well against highly advanged asps, but it might work well against early stage asps as well. Research in early stage melanoma is promising, but I might remember wrong. As immunotherapies work well in asps new trials will almost certainly come relatively soon. Trying another tki instead of pazo will most likely work for a while then stop. Because of the bleeding risk you most likely cant have ablation while using tki. If you find money for laser assisted lung surgery, that would buy most time to find immunotherapy trial. In best case if your asps is contained to your lungs you can be cured with just laser surgeries.

[Olga]

Sarah - I (like Deb) do not understand the sizes - the lung mets are usually only measured to a mm accuracy as per the CT scan resolution limits. Please clarify.

[Sarah Ti]

Probably i wasn’t clear.So,an year ago before starting votrient the largest lung met was 1.4centimeters.Now the largest is 8 millimeters.None is in centimeters thankfully.While there are 3 mets which have increased in size like 5.2 mm increased to 5.3mm,1.4mm increased to 2.5mm,2.6mm increased to 2.9mm.Rest are same.Is this increase not considerable much? The dr said that it’s stable and we wait and see what next scan brings.But Im tensed that should I do something else or just wait and see what next scan be like.I hope I’m able to explain now :)

[D.ap]

Hi Sara
So you’ve been on votrient for 11 months (?)
and how did the 1.4cm tumor not make it onto the report ? Has it resolved ( gone away) or gotten smaller ? Or did you go ahead and get it removed?

The scan that reported the increase was a 9-11 month comparison maybe?
So it was a 9 month report not just a 3 month report?

If you’ve had scans every 3 months , your 3rd set ?
And last but not least all here in US?

[Sarah Ti]

So i will go one by one.
Yes after removal of primary mass,it's been almost 11 months on votrient.
The 1.4 cm met is now 8mm,it shrinked.
I had been having my CT scans after every 3 months.The first scan after starting votrient in December(2017) showed shrinkage,the second one in march also did.Now the 3rd one has showed stability rather some increase.My last scan from US was Dec'2017.The rest two (March &July),I had from Pakistan.
Now I'll be going to US again by end of this month to see my oncologist.

[D.ap]

Sarah ,

Lol. Sorry to of made you repeat yourself .
Just now saw your previous post above .
So your increase happened in the last 6 months.
If I’m following you correctly. And they are scans from Pakistan , machines ?
We’ve noticed that comparing scans from different facilities can make a plus or minus 2mm difference?
I’d not worry too much on the difference , as it may of been an error by the person reading and reporting
Our doc orders comparison scans for upto a year prior and unless you knew of it, ( by the dates and the description that says comparison to date: ——— to current date:——)
It would look like a huge progression .

Very unnerving to see that increase .

[Olga]

Sarah, you should just wait and see what are the results going to be when done in US on the same scanner as before - for the truly comparable results. Sun-mm readings in CT scans should not even be used as the min slice is about 2 mm (you can ask the local radiologist what was the step of slice used), it is normally in mm, not in sub mm. The shape of the lung mets is round/oval shaped and if they are sliced a bit different, you get a bit different measurement for the same nodule. If you have a pre-treatment/pre-trip to US CT scan like a year ago done on the same scanner, you can ask them to compare, but really you should just wait till the US scan result.

[arojussi]

Just realised that your lung mets at the moment are most likely too small for ablation and most likely it would be best to wait for mets to grow, before laser-surgery as well, so more mets can be found during first surgery. Unfortunately tki cant permanently stop tumors from growing.

[Sarah Ti]

Hello everyone,
Hope you’re all are doing good.So I came back to US for my scan.I’ve my CT scan tomorrow.As the last scan in july showed little increase but it wasn’t very significant.Tomorrow’s scan will give a clear picture
The major problem Im facing is vomitings and diarrhea.Earlier i used to have a vomiting episode every 10th day but now it’s happening twice a week.I threw up twice in four days.I end up skipping 4 days medicines a month.But I feel too much nausea now.Does it happen to others too being on tki’s? Im on 800mg since one year