Jun 17, 2014 - 7:44 am
.My mom was diagnosed with Malignant Fibrous Histiocytoma, a 14x9 cm tumor was removed and 6 months later she had aggressive mets to lungs. ALL the literature states that her level has extremely poor prognosis. Luckily chemo actually worked to shrink the lung tumors and put her in remission (Jan 2014). She was started on Votrient as a maintenance drug in February and last scan showed dramatic disappearance of all except one pulmonary target lesion which at this point is barely measurable (less than 1cm).
Votrient is not without severe side effects. Her BP went up to 200's/100's (her bp normally runs low) and it has been a challenge to find the correct mix of BP meds to maintain a "normal" range. Her hair turned a very cool shade of dirty blond/gray and she is excited just to have hair back so the color does not bother her. The last couple of weeks she has noticed a sharp increase in fatigue and is experiencing nausea which puts her pretty low.
It seems people fall off of this site pretty quickly and you never hear the end or continuation of their stories. I will try to update as much as possible due to the fact that there are few sites for people to compare stories. I know everybody responds differently, but it is important to hear about the actual changes to patients qualities of life. Specifically, I am looking for other responses to maintenance on Votrient for patients with sarcoma, but look forward to any other stories