Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I'm so sorry to read this. I was following Toms story since I joined this forum.

Hello Olga, Yes I did another check in July, everything is the same as in March. The doctor said that at this point we can do this checkups for a while because this nodule could have been here for a long time like that. I'm going to do the regular CT, MRI scans in the next months so I will check it ...

Last Friday I went for a second opinion to see another doctor (Thyroid Gland specialist) which suggested the same. I have explained the whole ASPS situation and he did a detailed ultra sound. definitely no biopsy at this moment, but check up in 3 to 4 months. He said that MRI is not needed for him a...

Hi Ivan,

Yes non enchancing, and no bloodstream but this is only ultrasound. I will see another doctor tomorrow and will also ask for MRI

Hello Regarding the comparing scans since the start of my control scans I talked with the radiologist and the result is the same she claims that she does not see any visible growth or change in these 2 nodules. When I asked why the difference in size in some results, she said depends on the magnific...

Hi to everyone,

I'm not sure if this is the right topic but, have any of you discussed if ASPS patient should receive a COVID vaccine? Any risk than a person with no ASPS?

Hello Olga when I had the CT done with contrast I usually have difficulty breathing and the urge of having stomach reaction as throwing up. This lasts 10 seconds and that's it. but the feeling is like I will stop breathing. there are 2 nodules which are the same as the first scan but as I wrote, thr...

Hello Olga thank you for your reply All the scans are done on the same CT scanner but without contrast, as I have very bad reaction from the contrast. Probably next time I will do with contrast. we compared Sep2020 with March 2018. In March 2018 the report says 3mm but yesterday the Radiologist on t...

Hello everyone Update from me after some time: almost 6 years (in 3 months) since surgery and diagnosis - Had a CT Chest Sep 2019 and MRI Oct 2019 which was all good, same as before Due to covid I was not able to do the next check sooner so its been a year since I scheduled again. - Had a CT Chest l...

Hello Everyone Its been a long since I have read or written on the forum but believe me I was soo busy with work and Family that it kept me no thinking of nothing else. So in September i did a CT chest and end of October MRI of Abdomen and Pelvic. All the scans are clear with no changes. As I had 2 ...

Thank you Olga,

I also did today abdomen MRI and last Thursday Brain MRI.

Brain MRI is all clear.

I'm still having difficulty with finding a date for pelvic MRI as here in the state system is little bit chaotic but hopefully I will do it in September

They are doing great. Sleeping, Eating & crying.

Till now we are excellent

Hello everybody, First of all I want to tell you that one and a half week ago, I had my first baby girl. I'm so happy and thankful that I got to experience this in my life. I had a regular chest CT 30th of July which came out identical as previously. Nothing new same number of nodules that I had Jan...

the pain i my chest is in my chest muscle. I did not had it during the scan in March

however if it was something big that can cause pain I think it was going to be something visible, right?

seems that the pain is less and less to me.

I think I over estimated my self in the Gym few times.

I tried to get a Bone scan but there is none available at the moment through our Public health system so I should do this on my own in a private hospital.

Do you think I should do a Bone scan or with the latest results is not necessary?