Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I am Luke from China and I am currently participating in this trial.

I was diagnosed in April 2013, a year after i graduated from college. I was in the US at that time and have been receiving treatment in the US from then on. Here's a brief timeline of my treatments:

April 2013 - Surgery to remove primary tumor. CT scan found small mets in both lungs (all < 1cm)
June 2013 to August 2013 - Radiation to the primary tumor site
September 2013 to April 2015 - disease mostly stable
May 2015 - found a bump on my neck, ultrasound and CT scans showed it as a blood clot
June 2015 to September 2015 - the bump kept increasing in size despite I've been taking blood thinners.
October 2015 - biopsy of the neck revealed that it is a recurrence of ASPS. At this time the tumor on my neck was already 8.8 cm AP x 2.8 cm transverse x 4.3 cm SI. The small mets in my lungs also started growing rapidly.
January 2016 to February 2016 - radiation to neck & jaw & shoulder
March 2016 - suddenly developed double vision. MRI showed a tumor inside right cavernous sinus. Treated with radiation again
April 2016 to May 2016 - the residual tumor on my neck & jaw still kept growing. The tumor was very visible and I couldn't go out without wearing a patch on my neck. Under the advice of my oncologist, I went to University of Miami Hospital for a immunotherapy clinical trial (https://clinicaltrials.gov/ct2/show/NCT02636725)
June 2016 - Started the clinical trial with 6.7 x 3.9 cm tumor in neck&jaw and >10 lung mets with the biggest one measuring 1.6 x 1.7 cm. Taking 5mg Axitinib twice a day, and a Pembrolizumab infusion (200mg I believe) every three weeks.
September 2016 - neck tumor decreased to 4.7 x 1.8 cm, lung mets also decreased in size to various degrees (biggest one decreased to 1.1 x 0.7 cm from 1.6 x 1.7 cm)
November 2016 - neck tumor decreased to 4.7 x 1.4 cm, lung mets decreased in size again

Based on my own experience and what I heard from doctors, the combination used by this trial is very well tolerated. So far I haven't experienced any significant side effects. I did get some fatigue feelings and mild diarrhea one month after I started but they went away in two months. Maybe my body has somehow adjusted itself to deal with the medicines. In late November my bloodwork showed that one measurement related to thyroid is over the limit, so the doctor prescribed me with Levothyroxine. I didn't experience any symptoms though.

i will be updating this post when I get new scans.

Thank you and stay strong!

Hello Luke
Thank you for the detailed accountance of your treatment history . We too have low thyroid as of last bloodwork, but unbeknowence to me Josh has had low thyroid prior but it returned to normal levels as I understand it

Thyroid-stimulating hormone (TSH) 1
Adults:
0.4-4.2 microunits per milliliter (mcU/mL) or 0.4-4.2 milliunits per liter (mU/L)
Josh was 6 mcU/ml

We are doing a wait and see till next week with his levels
Extreme lethragy and diaherra , hair loss are symptoms we are looking out for in the mean time .

Hi everyone,

Apologies for the delay in update. I'm still on the trial and it's been going really well. Here are my progress since last post:

Feb 2016 - tumor on jaw(submental mass) decreased from 2.4 x 1.3 cm to 1.3 x 0.8 cm. Other tumors stable, with a few lung nodules shrinking slightly.
May 2016 - tumor in cavernous sinus decreased from 1.4 cm AP x 1.5 cm transverse x 1.8 cm CC from previous scan to 1.3 cm AP x 1.1 cm transverse x 1.5 cm CC; lung tumors mostly stable, a few shrinked again. The biggest one measures 0.6cm

The only side effect I experience is mild diarrhea but can be managed through diet (eg. more bread and rice). Still taking the thyroid medicine Levothyroxine and increased dose to 75mg.

Hi D.ap,

Thanks for the reply. How is Josh doing now? I hope he's doing well!

Hi Luke, thank you for an update, congrats on the good results so far. I am wondering why was the thyroid meds dose increased? There is a theory that low thyroid is better to slow sarcoma growth and there are even trials lowering thyroid intentionally, so I know that people prefer to stay on a lower thyroid meds dose possible.

Hi Luke

The results of a year on Keytruda and axitinib are looking amazing .
So all your lung tumors are below a centimeter now?
You are low thyroid ? Hypothyroid?

Rice and breads are a good antidiaherra food.

I agree with Olga in understanding the low thyroid levoxyl Med increase .
Also , you are having sched MRI scans qrtly?
The scan includes your thyroid detail ?
Tumors on thyroids can cause low thyroid levels .

Also I've read iron supplements can interfere with levoxyl absorption and make it pretty much ineffective .

Ps Josh is doing excellent and is maintaining his current weight gain .

We have our next scans at the end of July .

Luke the prior post quote

Also I've read iron supplements can interfere with levoxyl absorption and make it pretty much ineffective .

The forum, healthunlocked.com

"An update on my husbands thyroid problem

Nee22Nee22 3 months ago 11 Replies
We had an appointment today with the endocrinologist. They have taken bloods but in the mean time we have made our own discovery.
Probaby should explain more that he has a benign tumour on his pituitary gland. For this he takes 125 levothyroxine and 20 hydrocortisone. The tumour was a side effect of immunotherapy cancer treatment ipilumimab
He has recently been very run down and showing signs of b12 and iron deficiency. The doctors put him on ferrous sulphate which he has been taking every morning with his tablets.
It has now been discovered that the iron tablet have been stoping the absorption of his levothyroxine. That is why he has been slowly going down hill.
Luckily we have now picked up on this. Now he has adjusted the way he takes his meds we are hopefully looking forward to him getting back to normal.
The instructions on the iron tablets do not mention any reaction to levothyroxine, however the internet is quite informative about it. Should the pharmacist not have mentioned it? They provide all his meds and know his history?
Thank to everyone for all their help and support with this.
I will let you know how he is in a few weeks. Fingers crossed."

https://healthunlocked.com/thyroiduk/po ... id-problem

Hey Luke, I was hoping to get an update on your treatment status since my son will start this treatment next week? He still has to complete a biopsy and pet scan. Hope all is well!