Sarah from Pakistan - Dx 2017

[D.ap]

Hi Sarah,
I’d ask what degree of lung loss is seen with the ablation technique compared to the vats surgery..I believe each technique involves significant margins to make sure the tumor is removed safely.

I do know the vats procedure with Josh was quite hard on him compared to laser surgery. However it may of been because of the difference in pain management.
The laser Thoracotomy was in Germany .

[D.ap]

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

Hi Sarah,
Were you considered to be hypothyroid or hyperthyroid ?
Were you on any medication?

[Olga]

Hi Sarah.
unless Dr.Wilky wants to have this tissue for a tumour sample, I see no reason to have VATS for one single small met. It is the perfect size for a cryoablation. Less traumatic and less loss of the lung tissue.
Are all the other lung mets spread throughout both lungs?

[Sarah Ti]

Hello,
Its been a while that Im off social media and also treatment.Basically,I had no new updates except of being off treatment and waiting for VATS.I asked all the questions discussed on my thread regarding VATS.The surgeon,oncologist and Dr Breelyn all recommended having these mets remove surgically.Also because of the new changes:
After feb 2023 scan I came off Votrient and had a CT in April 2023 end.The mets size in left lung increased from 10mm to 15mm,4mm to 7mm and one 4mm.The right lung has under 1cm one or two mets.
My oncologist is Dr Jade Homsi and surgeon is Dr Scott Reznik at UT Southwestern(Dallas).Well Dr Reznik thinks vats is more precise in removing the mets.While ablation damages more area like around the met.Also,ablation wasn’t available to me here so I opted to go for VATS.I was supposed to have VATS last week but it got postponed due to some emergency case that came that day.
Well surgeon has briefed me about the recovery time,the initial issues and all.He believes it gets better gradually.He’s been doing it since quite long and told that he’d try taking out mets without giving much damage to lungs.
My oncologist has dealt sarcoma but not asps in particular.The one thing Im happy about is that Dr Breelyn is in the loop.One thing she doesn’t agree with my oncologist on was having biopsy of lung met.Dr Homsi told me that if Im opting for anything except surgery specifically systemic treatment then he definitely wants a biopsy.I wasn’t convinced either but eventually the VATS is gonna give him the sample for ngs testing(which again Dr Breelyn thinks isn’t really mandatory).
So 4 month now Im off Votrient and will be having VATS day after tomorrow.I had been so stressed about this long delay in VATS.
Also,I had MRI brain,bone scans,mri abdomen annually as long as I was in Pakistan.Now,moving here into such a great medical system I’ve to ask my oncologists myself to pls get my brain MRI.So after 2019 I didn’t have any brain mri,Dr Breelyn actually recommended to have one after VATS now.
Well a bit disappointment in terms of delay in procedures,oncologists words and approach.All good words for Dr Breelyn,she said I’ve long way to go when my oncologist had some harsh facts to tell.But taking step by step now.Remember in your prayers and pls do share something Im missing on or needs to be done.This place is safe heaven for all of us fighting asps.

[jcs2007]

Sending prayers to you today and please post when you are able to do so.

[Sarah Ti]

Thank you.Had my VATS 10 days ago.They made 3 incisions and well it was painful initially.The discomfort,pain,shortness of breath all occurred and still does at times.They tested the mets and came out as expected i.e Asps.Now Im gonna see my oncologist after a month,after the CT scan,bone scan and MRI’s are also all done.Hopefully nothing grows.Sending good luck to everyone fighting it

[D.ap]

Sarah
So glad that the VATS procedure is begin you.
Let us know how you continue to improve and how the scans look .

Love ,

[Sarah Ti]

Thank you Debbie.
Im doing better.The incision under my armpit still hurt at times.Im trying to walk at least a mile daily but walking fast still does make me short of breath.Hoping it gets better with time.
I had one question regarding MRI Brain and Bone scan scheduled for same day.Actually they had availability for both same day so they asked me and I said yes.I know both are different tests but is the contrast gonna be too much within a day or anything like that? Im thinking to have them on separate days,should I?

[D.ap]

Sarah
So glad that the VATS procedure is behind* you.
Let us know how you continue to improve and how the scans look .

Love ,

Sarah
Glad you are able to exercise!
Exercise really helps with our overall well being.

Does your onc require contrast with your MRI ?

[Sarah Ti]

Yes the MRI is with contrast

[Sarah Ti]

Hello,
Hope everyone is doing good.Just wanted to update on my treatment changes.So basically I had my MRI Brain and Bone scan in July and they came out clear.But the CT chest post VATS showed multiple nodules including some new tiny mets.So the VATS didn’t give the outcome we were expecting and systemic treatment had to be started.
So this month I started with atezolizumab infusions.It’s going fine except for the swollen lymph nodes that just popped in my neck.Rest,there aren’t any side effects as such for now.I hope this treatment works.My oncologist at utsw believes there isn’t much data on atezo so he can’t really tell if it’s gonna work or not.All luck.Anyway,just praying and hoping it works

[D.ap]

Hello,
Hope everyone is doing good.Just wanted to update on my treatment changes.So basically I had my MRI Brain and Bone scan in July and they came out clear.But the CT chest post VATS showed multiple nodules including some new tiny mets.So the VATS didn’t give the outcome we were expecting and systemic treatment had to be started.
So this month I started with atezolizumab infusions.It’s going fine except for the swollen lymph nodes that just popped in my neck.Rest,there aren’t any side effects as such for now.I hope this treatment works.My oncologist at utsw believes there isn’t much data on atezo so he can’t really tell if it’s gonna work or not.All luck.Anyway,just praying and hoping it works

Hi Sarah,

You’ve been off votrient since March and had vats recently..
What kind of increase did you all see in size , since your vats procedure in June /July ?

Are you still on a thyroid med?

Did your team perform the ngs?

Was there any analysis performed on the vats removed tumors , that indicated how much affect the votrient had on your tumors ?

What was your oncologist thoughts on your swollen glands ?

Any recent infections ?

My prayers too that atezolizumab works on those pesky lung Mets !💕
Love ,