Sarah from Pakistan - Dx 2017

[arojussi]

Having access to pd1-inhibitors can be very difficult, but they seem to achieve response in more than 50 percent of asps patients and responses are very often long lasting. So as I said before any drug company would benefit greatly to have asps-patient test their pd1-inhibiting drug. Tki cant achieve long lasting responses normally, unless somehow tki leads to immunesystem treconising cancer. So medically using surgeries and ablations is better, than life-long tki-medication. At least I had much higher quality of life, when I was using surgeries and ablations instead of tki-treatment. I am sorry, but immunotherapy or surgically removing all cancer tissue are only realistic ways, that can achieve long term survival, that I know of.

[Sarah Ti]

Hi,
So my Ct chest+abd+pelvic scan showed stability.Surgical area is clear.The lung mets are present though and didn't show shrinkage like last time but also there isn't any growth anywhere thankfully.The lung mets measure the same size except of 1 met which decreased like 1 or 2 mm max.I'll send the Cd of this scan to US and they will also see the images and do measurements for more verification.As I came back to Pakistan so I really don't have other treatment options except of votrient or surgery for now.I do know that surgeries and immunotherapies are the most realistic way for eliminating cancer but in 3rd world countries the lack of treatment options just push you more towards dead ends.However,I had been fighting this battle with all possible strength and resources since april 2017.Got my surgery done here in Pakistan which went fine and then I struggled to reach some sarcoma center in US.Though,i went there and got access to regular oncologist rather than a sarcoma specialist and started with votrient.Up til now,it has been either showing shrinkage or stability but I know it will stop working at some point and then I'll try going to US again and explore access to other treatment options if I can.Thats how it works some times,'going with the flow' I guess :)

[ntran727]

Great to hear of your stability! As long as you are able to tolerate the Votrient and have stable disease, then you should just stay on the treatment for now to buy you more time. If it ever stops working like how Sutent stopped working for me, then you can switch to immunotherapy, especially since it will be difficult to get at the moment. Hopefully it gets approved soon for ASPS and will be more accessible in other parts of the world and the country for that matter.

[Sarah Ti]

Thank you Nhi.I read about the unfortunate new mets found in your scans.But I hope that the keytruda bring good news for you and show great shrinkage.
Well yes for now I don’t have any other option except votrient so Im on it.However,you know that the side effects disturb me a lot quite often.

[Sarah Ti]

Hi everyone.Hope you all are doing good.
Sorry,just had been off this forum due to my dad being hospitalized.Well I had my yearly bone scan,MRI brain is due next week.Well the bone scan didn’t show bone metastasis thankfully but it states mildly increased uptake in my surgical site.Basically last year the bone scan showed same thing stating it can be due to infection which led me to abdomen MRI.That MRI in last year march showed abnormal hypterintense T2 singals but no reoccurrence or lesion and the july’s MRI showed no T2 signals then.This year I had no MRI of abd
Now,my question is if this response is normal related to surgical site? Also,this bone scan says that non-visualization of adjacent iliac wing which shows decrease in intensity compared to previous scan.I had clear margin resection from left ileum.CT scan 2 months back also showed nothing suspicious at surgical site.
Also is MRI abdomen needed other than CT scan of abdomen? I have my CT lung+abd+pelvic every 6 months and bone scan and MRI brain yearly.Is it essential to have an MRI of abdomen yearly too?

[Olga]

Usually all the suspicious bone or soft tissue findings by all types of scans are later verified by the MRI with the contrast to rule out local recurrence. MRI remains the most specific scan for that. You can start from asking the radiologist to re-review the CT scan you had two months back on the basis of the suspicious findings on the bone scan, i.e. they should have a re-review on that particular spot to see if there is anything even mildly suggesting the local recurrence. Was the abdominal CT done with the contrast?
The MRI of the resection site is usually recommended once a year especially with the abdominal location as there is usually hard to make the really wide clean margins and the recurrences are frequent, we have seen many cases when the ASPS recurred in that location. I realize that MRI is expensive though.

[ntran727]

Yes, I agree with Olga that the MRI is a better test. It also doesn't have radiation, so maybe you can ask to switch to MRI abd/pelvis instead of CT abd/pelvis. That's what I eventually did to minimize the radiation exposure and to be able to visualize all the areas. The bone scans do have more activity/uptake after a procedure, but I am not sure if it should be increasing, so you should definitely try to review with the radiologist on the past scans as Olga had said.

[Amin]

Hello Sarah. This is amin from pakistan currently living in states. My brother who is 17 diagnosed with ASPS on his foot. I read your threads. I have a lot of questions, which I am looking for answers. Please tell me what is the best way to reach you out. Hope you doing good

[Amin]

Hello, any help with and knowledge of laser surgery on lungs would be really helpful

[Olga]

Hi Amin, if you have any questions please open a new thread for your brother in this forum - if you are concern re. his privacy, you can use his first name without the second name or even a nickname, then post a short description of his case and ask any questions. Unless your questions are specifically to Sarah - you can send her a PM trough this board, there is a link on the upper right

[Sarah Ti]

Hello,
Hope everyone is good.I know it’s been a long time here.A lot of successes for fellow asps warriors n some losses too.Well,as known it’s been 6 years that Im on Votrient(tki),which had been showing stability.But a lot of things changed meanwhile.Well few ppl might know my journey but would just give a lil summary.So this April would mark 6 years of being diagnosed with asps.Primary in abdomen with mets to lungs.

Tumor resected - May 2017
Votrient started - September 2017 till now
I had been having CT chest+abd pelvic every 6 months and it has been stabe.Brain,bones yearly clear until 2019 as I didn’t get brain,bones scan done post Covid-19
I had around 15 mets then with largest 1-1.5cms.Now there are probably 10 tiny mets visible with largest being 1cm.All mets are either 0.4mm or 0.6mm but the largest one is growing.Though it decreased to 0.7mm in 2016 but year by year its increasing/not responding.
Well my oncologist thinks that its not a major growth n its good even if its stable.We dont need to do anything now.Back then immunotherapy or ablations were not possible as I wasn’t in US but now Im living here so it’s a possibility for me.Last time when my oncologist thought that primary shouldn’t be resected,this group helped me so much in making my mind that it SHOULD be resected if thats a possibility.And thankfully I did that and if I didn’t get it out then probably I wouldn’t have been here today.
5 years on Votrient have been nothing less than a rollercoaster n still is.Though I went from 800mg to 600/400mg.My thyroid,cholesterol,b12 are messed up though taking meds for it but its just a added gift with tki’s.
Well I just want to know your experiences/suggestions for this? What are the better options for these mets? Should I consult a sarcoma specialist here as I’ve never consulted one or just stay on Votrient? Will really appreciate your help guys.
Thank you

[D.ap]

Hello Sarah ,

Where Is the growing tumor located ? Right or left lung ?
Could it be easily treated with some type of ablation?
Dr. Littrup Or Dr. Auon could help make that assessment of ease treatment .
https://www.topnpi.com/mi1043206881/dr- ... ittrup/amp

[Sarah Ti]

Hello,
So I met Dr Breelyn Wilky finally.What an amazing lady,so compassionate.After seeing all things,she suggested that I should get VATS done for that 1cm met b/c of it’s location.It’s in lower left lobe which she believes can be easily resected.While ablation might damage more area of lung.After resection,if other mets grow which are all under 6mm.Then we can move to immunotherapy.Also,Votrient should be stopped as the side effects have effected a lot.
I know that I want that met to be resected but I’m so confused between ablation and VATS

[D.ap]

Hi Sarah ,

Have you decided and found a doctor who would be able to do the VATS yet ?

I’d make that appointment and see what they say about the amount of reduction in lung mass and functions that would be affected ,with the VATS procedure.

Have you visited with Dr.Auon or Littrup yet ?
They would be the best people to give you an opinion on what they see and how easy it could be treated and with what technique of ablation tools.
Also they would give you an opinion on how it might affect your lung functions.

[Sarah Ti]

Hello,
Glad to hear from you.Yes,I’ve been referred to a cardio thoracic surgeon at UT Southwestern as Im living here in Dallas.Will see him next week and ask all
Dr Wilky suggested VATS for that met considering it’s location(lower left lobe).As it will resect more precisely,if the location was not surgically accessible then ablations was better.
Im just bit skeptical about VATS compared to ablations.If there something less invasive that can resect,I would want to prefer that.