Hey Natalie,
It’s Dan this time, sorry to hear your story, but you are going to a great place to get help. If you have a couple extra minutes while you are there, check out the Healing Garden in the Yawkee building. 3rd floor. Good luck!
Dan, I , too, am followed at Dana Farber. My next scans are a week from today. I have synovial sarcoma right elbow. Only had surgery and radiation. Last scans, July , we’re clear. I would be interested in your vaccine trial if my scans are clear next week. Myna oncologist is Dr George. We travel from VA for scans at DFCI. Glad to know about the NIH trial, too, if I need it.
In April of 2011 My Grandson was diagnosed with Synovial Sarcoma. At First they couldn’t determine where it started until they found a 12 cm Tumor in his foot. After the Countless x-rays and Mris the doctors determined it had metastases and traveled to his leg, Groin and even found several nodules in his Lungs. Billy is 17 years old and a High School senior in South New Jersey. We were all devastated but still hopeful that he could beat this horrible, Rare Cancer. He Began treatment with a Chemo cocktail of Doxorubicin and Ipomoxicide at Children’s Hospital of Philadelphia (CHOP) and had 8 sessions of Chemo ...every 3rd week...for 3 days a session..After the Chemo he had 42 straight treatments of Radiation (Monday to Friday). During the treatment he had a few Mri's which showed that the Chemo Had reduced some of the Cancer. Finally after a few weeks of no treatment in January My Daughter and My Grandson Traveled CHOP to consult with the Doctors as to what his new Therapy would be. They couldn’t continue with the Doxorubicin because it conflicted with the Radiation, so we wondered what type of Medication He would receive. After the Final MRI the Doctors called them in and told them that Billy is Cancer Free. In Remission. GONE. NOTHING . NADA..No Cancer. I really don’t think there was a dry eye anywhere, whoever we told (and we told everyone) they cried and couldn’t believe the news. We all prayed and lit Candles and went to Church and still do. I can’t say enough about the care that Children’s Hospital of Philadelphia gave my Grandson. They are truly sent from God. Which brings me to someone else I need to Thank. All of our prayers and all of the Candles..and all of the Promises did not go unanswered. Thank You Jesus for answering this prayer. For everyone out there suffering from this Horrible disease we continue to pray for you and your loved ones. I can say from experience that Miracles do Happen. Don’t ever give up, don’t ever believe that there is no hope..Because there always is and always will be. Billy is still experiencing a lot of Pain , especially in his foot and continues to be on heavy duty Pain medication. The pain we are told is from Scar Tissue and Calcification in his foot. The doctors have told us this is not an uncommon side effect from the Heavy doses of Radiation and may continue for up to a year. Billy , you are truly My hero...and as far as my Daughter...You’re Hero 1 A...Love you both .....Anyone caring to answer can respond to either email. ■■■■■■■■■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■■■■■■■
If you can get him into a message therapist someone who works with nerve pain it can help tremendously as can acupuncture. Good luck.
Tradernj said:
In April of 2011 My Grandson was diagnosed with Synovial Sarcoma. At First they couldn’t determine where it started until they found a 12 cm Tumor in his foot. After the Countless x-rays and Mris the doctors determined it had metastases and traveled to his leg, Groin and even found several nodules in his Lungs. Billy is 17 years old and a High School senior in South New Jersey. We were all devastated but still hopeful that he could beat this horrible, Rare Cancer. He Began treatment with a Chemo cocktail of Doxorubicin and Ipomoxicide at Children’s Hospital of Philadelphia (CHOP) and had 8 sessions of Chemo ...every 3rd week...for 3 days a session..After the Chemo he had 42 straight treatments of Radiation (Monday to Friday). During the treatment he had a few Mri's which showed that the Chemo Had reduced some of the Cancer. Finally after a few weeks of no treatment in January My Daughter and My Grandson Traveled CHOP to consult with the Doctors as to what his new Therapy would be. They couldn’t continue with the Doxorubicin because it conflicted with the Radiation, so we wondered what type of Medication He would receive. After the Final MRI the Doctors called them in and told them that Billy is Cancer Free. In Remission. GONE. NOTHING . NADA..No Cancer. I really don’t think there was a dry eye anywhere, whoever we told (and we told everyone) they cried and couldn’t believe the news. We all prayed and lit Candles and went to Church and still do. I can’t say enough about the care that Children’s Hospital of Philadelphia gave my Grandson. They are truly sent from God. Which brings me to someone else I need to Thank. All of our prayers and all of the Candles..and all of the Promises did not go unanswered. Thank You Jesus for answering this prayer. For everyone out there suffering from this Horrible disease we continue to pray for you and your loved ones. I can say from experience that Miracles do Happen. Don’t ever give up, don’t ever believe that there is no hope..Because there always is and always will be. Billy is still experiencing a lot of Pain , especially in his foot and continues to be on heavy duty Pain medication. The pain we are told is from Scar Tissue and Calcification in his foot. The doctors have told us this is not an uncommon side effect from the Heavy doses of Radiation and may continue for up to a year. Billy , you are truly My hero...and as far as my Daughter...You’re Hero 1 A...Love you both .....Anyone caring to answer can respond to either email. Tradernj@aol.com or FFerrante12@Bloomberg.net
Hello Daniel… I would love to know how this trial ended up going for you and what your status is now? I am in Boston being treated at Dana Farber and Mass General. Can you please provide an update? Bless your life and thank you. Vanessa
Waterfire, I’m afraid you have asked a question on a ten year old thread. (The dates on each post are expressed this way:
Apr '12 = April 2012
Apr 12 = April 12 this year.
3h = three hours ago.
12d = 12 days ago
I know this is disappointing, but you may want to use the magnifying glass again to see if there are other threads to join. Even better, make a new post asking one or two of your most important questions. Somewhere on your post, key in @modsupport : that will copy it to me and then I can help encourage responses if you don’t get answers.
Wishing you all the best
Seenie from ModSupport