Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Martin, can you pls clarify what exactly the radiology report says:
how many nodules are there
how many are growing
what are the largest nodules sizes

Hi, sorry I missed this question. Keytruda is not the typical chemotherapy that is used as long as it is working. Keytruda mode of action is taking breaks down and hyperactivation of your own immune system to make it able to detect and attack tumors. As soon as the immune system managed to successfu...

Hi Martin. Since you did not have any treatment and was just watching your nodules to grow slowly during few years, those are 100% ASPS. Don't go to that oncologist anymore, because what he said is irrelevant to your situation - if there are nodules with a history of the slow growth from one scan to...

Hi Martin. I am not sure if we have the full information about your case as there were no updates between May of 2022 and Jan. 2024. Can you please clarify: Is Keytruda available for you under your insurance? Have you had any systemic treatments done between 2022 and 2024 or it was just watched/scan...

Johannes, Hi, I missed this worrisome update. Was anything done as of yet? Just wanted to remind you that there is still might be an option of the cryoablation for that lung and femur met. If there are only 2 of them growing. Some mets may develop specific mutations resistant while the other ones do...

Cindy, perhaps Sam was given steroids to go along with the radiation treatment, no? If that is the case, the weight gain can be explained.

Yes,his heart metastases were only clearly visualized on the cardiac MRI. This is some kind of specialized MRI unit that is available at the large cardiac surgery hospital in Vancouver. Echocardiography or what commonly referred as Echo is somewhat helpful but not specific enough. The imaging modali...

Cindy,
I am sorry to hear about this development. Just to let you know, we had the patient who said he was so much better when the affected leg was resected and prosthesis was installed. He said, should have done it earlier.

Illiniparent, may be after the local treatment are done and she is well recovered, she might try Keytruda (pembrolizumab). Although it is the same class of the immunotherapy as the atezolizumab, it is a less specific one and there are the cases when one works when the other wouldn't. Ask for a refer...

Hi Nino I have to compliment you on a very good understanding of the disease and studies done, you are a quick learner. Re. Deb advice about preparing for the immunotherapy - read on microbiome and add non soluble fibre to feed it. There is a lot we have written about. We recently added the psyllium...

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?

I would advocate going back to immunotherapy. It is often effective after the restart. Egg harvesting procedure is done on the pretty high hormone dose and that might have been the reason for the following progression and reduced sensitivity to immunotherapy treatment. As the hormonal level is back ...

Good to know, but do we have a say in what drug is used when the surgery conducted? Not likely. I hope that medical community updates their understanding though and considers this.

It is suspected that ASPS metastasizes very early in course of its progress, and the mets just stay dormant at the sites they attach themselves to i.e. lungs where the single cells are easily trapped at the dead ends of the twisted capillaries. The primary grows in the meantime, but the cells are st...

The full story can be found in the first post of Ivan thread. Dx in 2003. The primary was very small. Right arm, 18 mm when resected First Lung mets were found few months later. Continued to slowly increase in size and number till the first laser assisted resection by Dr.Rolle in Germany 2 years lat...