Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello member of ASPS, some time ago that I have not posted. I had a small update and ask for advice. I Mets. bone for some time. My head of the humerus and humerus his badly damaged over 50% of the cortex is missing and there is a risk of fracture. I propose surgery to strengthen my bones and then r...

Hello, long time ago that I have not written on the forum. The last time was difficult. The surgery was done in and it was a metastatic sarcoma. Brain metastases are stable, but I must continue Decadron, there is always swelling again and I still paralysis and headaches when I try to shut down. Side...

Hi Tricia, I think it's the best thing to do to build on our quality of life first.

thank for the story,

Cricri

Hi Kim,

I also having trouble with this drug. I took 40 lbs, many retain water. The belly swells, face and muscles become weakened. It helps a lot for the swelling to the brain, but the side effects are terrible.

Good luck to you both!
Cricri

Hello, you're always a great help. I decided resection of the total mass and no biopsy. The surgery will take place on October 21. I have to hesitate because I started to partially paralyze the left side and right side now. I will ask for an MRI to see if there is a progression to the brain. 1 year,...

Hello, I just finished radiation treatment for pain. To date no change. After the bones, now just a solid mass appearing in a breast. Waiting for a biopsy hoping that this is benign. But is this a sarcoma can form this place? I'm anxious, I try not to make me negative scenarios, but it is rather dif...

Hi Olga and Good Hope, I get help because I feel powerless and I do not want to die. My radio oncologist wants to manage a single metastasis by radiotherapy. Is the same thing Radiofrequency Ablation? The bone metastases are at the right posterior pelvic bone (25mm x 42mm). Hip right femoral head (1...

Hi Olga, after a good news. Doctors have discovered bones metastases. I'm discouraged and I am afraid. At the basin, they can treat me with radiation to relieve me and stabilize growth. I have the impression that cancer takes over and I am afraid. I do not know anything to bone metastases and my doc...

Dear member of asps, long ago that I did not write on the forum. During my irm February 26, irm showed a slight decrease in méts. brain and no news. The irm of June showed a stability and no new méts. I have not accepted the gamma knife or other treatment. I know that asps are resistant to treatment...

Hello, I got news from Sherbrooke for the gamma knife. The neurosurgeon wanted to meet me and m'hospitaliser 2 to 3 days to make examinations. I am not sure he would have done the gamma knife. I decided to refuse because I made too tired physically and psychologically. I will not be able to beat me ...

Hello, the results of radiotherapy are disappointing. The dish did not respond, they have increased in volume and number. Waiting for news for the gamma knife. The neurosurgeon said that combined together, it's more efficient. That is my only hope at the moment. Here I am still on the decadron and I...

Hello, I wanted to give you some news. I received radiation treatments for the brain as a whole. I had a relapse of temporary paralysis before getting treatment. It is now 2 weeks since I finished and I still carries. I shall only in December if the treatments were effective. I remain positive and I...

Dear Bonnie and your family, I wish you my sympathy deepest . It saddens me very much.

Cricri xx

Sheree Hello, I do not understand why the doctors do not want to make the dish to the lungs. I had lung dishes, the largest measuring 1 cm, and they operated to see if it was the cancer that had returned. It is important to stress and to convince doctors. It's the life for your husband who depends n...

Hello Olga, your information is always very iimportant. The neuro prefers that I receive the radiotherapy before gamma knife. You know the doctors here are not informed any for the ASPS. Then, will be able you to inform me about different point. Do you know the effectiveness of the radiotherapy on c...