Cure Alveolar Soft Part Sarcoma International (iCureASPS)

So happy to read this and so thankful for you and the love and support you give all of us!

Thank you for the update Olga. You and Ivan are always in our thoughts.

Kathy and Tom

Hi Lynette, Thank you for reaching out. Tom is doing much better on the 1/2 dose. He still had high blood pressure so they have him on meds for that. His blood work has been good so far. His latest was yesterday so we are waiting to hear the results. His most recent MRI of the back showed the tumor ...

Tom and I are thinking of you both and sending our love.

Tom is off the votrient for the time being and has been since last Wednesday. Flu like symptoms knocked him down. Due to the terrible headaches and stomach issues, tests are being scheduled as I type. Constipation issues seem to be resolving a bit, but back and leg pain have increased again. Headach...

Thinking of you always Ivan. Tom and I send our love to you and your Mom.

Good morning everyone, We are currently trying to get scans and records sent to Sloan Kettering for another opinion from their surgical team. I am frustrated with how slow this process has been going. Consent and requests were signed weeks ago and as of yesterday, MSK had not received anything. So t...

Thank you Bonnie, your kind words always mean a lot to us. Tom has decided to move forward with the Votrient. His father is treating him to a fishing trip in Alaska next week, so once he returns he will start the medication. We are really hopeful it will help with the pain and will stabilize everyth...

Thank you Lynette, We really appreciate your advice. We are waiting to hear back from Dr. Burgess (Tom's oncologist). We are going to meet with her and get a plan going. I am really thankful to read your positive remarks about Votrient. We will post when we know more, but at least now we feel better...

Thank you Debbie, Happy Mother's Day to you as well. This L4 issue of bone involvement has been an issue for years. We have been told so many different opinions. The surgeon did tell us after surgery that there was not bone involved, but we are now being told by several of his doctors now that there...

Lynette,
So you know of patients with bone mets like Tom's stubborn L4 area that have had success and pain reduction? The pain is really bad.

xoxo
Kathy

Thank you all for your advice. I am trying really hard to stay strong and focused but I feel like I am falling apart. I honestly do not know what to do next or what method to pursue. I do not feel as though I am doing a good enough job for Tom and it is scary. I emailed his oncologist everything tha...

We heard from Dr. Wilky in Miami. Tom does not meet the criteria for the trial due it requiring multiple lesions over 1cm that are not bone. She suggested Votrient or Sunitinib. If Tom has growth on these, she would reevaluate him for her study. Thoughts? Ideas? Concerns? We are eager to hear from a...

Tj and I would like to thank so many of you who continue to help us with this awful road we are on. I know I am not posting often but so many of you keep in touch via email and facebook. We appreciate all the advice and help. I cannot lie, we are feeling very lost right now. I feel like every time w...

Thanks for reaching out Bonnie, please know that I don't post a lot but everyone on this board is constantly in my thoughts and prayers. I still have such a hard time believing this is our reality. Tom is doing well. He just had a pet scan and everything looked good. His brain mri is scheduled for t...