Cure Alveolar Soft Part Sarcoma International (iCureASPS)

As ASPS appears in lungs as a possible secondary metastasis , I am curious as to the results of how each patients has retained and/or lost their lung volume and to what degree from their chosen course of treatment.

Being as a result from :

1) as a result of surgeries

2) and as a result of systemic treatments and or ablative treatments

Love
Debbie

Hi Debbie,
From my experience, after having surgeries to both lungs(robotic and VATs) 7 weeks apart, I was on O2 for almost 2 months post second surgery. 3.5 months post first surgery, I still feel tightness in my chest, stabbing pain from time to time on incision sites. Itching is common. I can only blow up to 2000 on the incentive spirometer.
Breathing is better now. Labored with exertion.

Miranda

Deb, as you know Ivan had 5 lung surgeries overall, 4 to remove his multiple lung mets by Dr.Rolle in Germany and 1 in Vancouver by our local surgeon Dr.Evans to repair the air leak after we returned home after the surgery # 2.
So I am very much familiar with the loss and recovery of the lung function subject. It depends on the tools used, extend of the surgery and the skills of the surgeon. We traveled to Germany specifically to save Ivan's lung tissue as the loss after the laser assisted surgery is drastically less than after the conventional surgery. Plus the excellent rehab exercises and tools they use there. As you are very well aware, the stay after the lung surgery in Germany was close to 2 weeks, and the specific pulmonary exercises were extensive and started very early. Soon after the surgery the volume was really affected by the loss of tissue/swelling of the lung/nerve inflammation, by about 25% during the first recovery month. But after awhile and Ivan keeping the breathing exercises using this breathing device with the airfloating balls, walking and later running, his lung volume and O2 saturation rate is back to normal with no breathing limitations whatsoever now.
He had the inter-coastal nerve syndrome after the repair surgery in Vancouver, and it was the immense stabbing pain and tightness that only came down with the time and Gabapentin. In Canada they use the conventional way of doing open lung surgeries, cut the muscles and damage the nerves. In Germany Dr.Rolle used the different technique, it was more difficult for him but better for the patient in the long term. He used a small frame as a window, with the muscles stretched and put on it to provide an access to the surgical field without cutting them. It is called muscle sparing pulmonary metastasectomy. I guess you need to be such a dedicated professor or surgery as Dr.Rolle was to do all of this meticulous work.

Hello Miranda,

With each surgery , our son had to work at building up his lung strength.
My sister,whose a nurse , and Olga whose had lots of experience with post surgeries of the lungs , stressed that Josh needed to use his spirometer religiously and not skimp on that part of his PT.
Using pain meds before embarking and using the spirometer was highly suggested by my sister and taking deep productive breaths was strongly encouraged by both .
Hope this helps .

So sorry for the incredibly late response.