My husband Matthew has been on Votrient for nearly 4 months now. After noticing some worsening symptoms, I sent him to his oncologist’s office after a scan. They found a new 9cm tumor pressing against his heart. They have given him days to weeks left. We took him home on hospice. I don’t know what to do. I don’t know if I should be calling other facilities to inquiry about other treatments or just look for peace and acceptance of the inevitable. We’re so scared and I turn to any of you for guidance.
CarrieV,
It is time to get very aggressive! #1. Is your husband's oncologist a sarcoma specialist? If not, find one. Not sure where you live, but here in California there is Dr. Sant Chawla in Santa Monica (310) ■■■■■■■■...he has many clinical trials. I've heard many horror stories where patients were given no hope and they are with us today...he is very aggressive when it comes to treating sarcomas and I have been in his care since 2005. Vicky Chua is his clinical trial coordinator and is very knowledgeable. There's also MD Anderson and Sloan Kettering Memorial.
I saved these recommendations Elodie had posted to this site some time ago. Praying that things will work out for your husband. We're here for you!
MD Anderson and Sloan Kettering offer trials that you won't find anywhere else. Dr Chawla in California also leads a lot of sarcoma trials:
http://www.sarcomaoncology.com/s_cv_Chawla.html
Trials are listed here:
Type 'synovial sarcoma', 'soft tissue sarcoma', 'sarcoma' or 'solid tumor' in the search box.
As far as therapies that are not offered everywhere:
Dr. Gerald Rosen at NYU: http://www.med.nyu.edu/biosketch/roseng04
Dr Littrup for cryosurgery: http://www.alveolarspsarcoma.net/index.php?p=trials
Dr. Rolle for laser surgery of lung metastases: phone 0049 352365102
Fackkrankenhaus Coswig GMbH, Neucoswiger StraBe 21, Coswig / Dresden D-01640 Germany.
Sashaminpin just reported her daughter went into remission after joining the ANGIO1 trial. Unfortunately this trial is only for pediatric patients( less than 21 years old) and there is no similar trial for adults:
How is Matthew reacting to the news? How is he feeling? What does he want to do? Does he want to keep fighting or is he ready to give up? You can't force him to look for other treatments if he doesn't want to, you can only try to support your best whatever decision he makes, whatever makes him happy. Stay strong for him!
Elodie is right. If your husband is ready to stop the fight then it is important to stand by him. It is his body and his fight. However, if your husband wants to continue, you MUST reach out to a sarcoma specialist. I took my son to MD Anderson in Houston, Tx and we live in upstate NY. My thoughts and prayers are with you both.
My husband had tumors in his heart also, we went from San Francisco to MD Anderson Cancer Center to have treatment their in the sarcoma department. After 8 rounds of chemo, Dr. Michael Reardon (off Methodist Hospital in Houston) performed a resection with clean margins. After the surgery he did 4 more rounds and had about 5 months of clean scans.
After 5 months- he had regrowth in two spots and we were told there was no more treatment options available.....he passed away after 18 months --Please PM me -- It's incredibly rare and I can help answer any questions and give any advice I can.
My husband had a terrible reaction to votrient and his focus now is quality of life vs. other treatment. The one thing I will add though is that my husband was very advanced when he was diagnosed and should probably have only had 6 months. It’s been we’ll over a year, so don’t always count on the time frames you are told. I think the other comments above are right on - what does your husband want right now? My husband has not given up but is not willing to do other chemo treatments with the time left. He does have a tumor that is causing tremendous pain and we are going to radiate it in hopes that will alleviate the pain he is in to help keep him comfortable in the time he has left. It’s a tough decision and I know how you feel. I went through the same questions a few months ago and even contacted MD Anderson, but my husband was not willing to go there at this stage of the game. Hope this helps in some way, and I am sorry you are facing this situation. I am right here with you, just a few weeks ahead in the process unfortunately. This disease is so vile - sneaky and fast. I hate it.
I also wanted to tell you that my husbands were 12 cm when they did the first heart surgery--Dr. Michael Reardon is amazing--maybe you could contact them and see about resection surgery. http://www.methodisthealth.com/mcsa.cfm?id=37969
I am so sorry to hear this. I went through this in September. If you want to talk you can email me at ■■■■■■■■■■■■■■■■■■■■. Your all in my prayers.
Dora Oquendo