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January 6, 2013 at 5:40 pm #20912
I finally have a date to start Cyberknife to metastatic nodes in thoracic chain. Nodes first showed on Sept Pet. Two thoracic surgeries in Oct. Vats surgery in early Oct failed to visualize malignant nodes so Mediastinoscopy in late Oct was done but only partial resection was possible due to close proximetry to pulmonary artery and aorta. CT scan 6 weeks after surgery showed some regrowth at surgical site and new enlarged nodes between esopagus and trachea. Consult with Radiation Onc on Dec 6 who decided Cyberknife was appropriate to both sites. Simulation set up on Dec 21. Finally Cyberknife will start this Wed. So I have had active disease since Sept.This has been incredibly hard for me emotionally. I have an appt with Med Onc tomorrow to discuss possible systemic treatment. I also have a new incisional hernia below my right ribs that will have to be repaired at some point. That will be Surgery # 8 in 3 years. The Rad Onc warned me I will probably have a nasty case of esophagitis which can be very painful. I would like to know if anyone else has experienced this and how they dealt with it. Despite all of this I feel better now that a plan is in place. I don’t do well with the waiting. Hope everyone is starting 2013 on a good note.January 7, 2013 at 12:44 am #58399Shirley ZParticipant Hi Mary Sue,
Happy to hear the plan is in place. It has to be so hard just living in limbo.
I feel so bad that you have had to endure so much. You are a real trooper and I pray that everything goes well.
Hoping once you get past these obstacles the reminder of the New Year will be better for you.
Hang in there!
Shirley ZJanuary 7, 2013 at 12:54 am #58400
Thanks Shirley. I have some hard times coming up but its better than sitting and waiting and wondering. I forgot to mention I also have an enlarged hard lymph node under my rt arm. It is still small and hasn’t grown since I discovered it 2 wks ago. I’ll find out tomorrow if it lit up on the PET scan. Thanks for thinking of me.
Mary SueJanuary 7, 2013 at 10:53 pm #58401
Had appt at Med Onc today. There is 3 new areas next to my trachea plus the area that was partially resected in precarinal area now has growth and SUV of 18. The lymph node in rt axilla is lighting up plus new suspect areas. One is left 6th rib and thyroid. So I am still going with Cyberknife to the mediastinal areas but am going to start Zelbobraf as soon as it comes in. I was hoping to do Ippi but Onc thinks this is getting aggressive and would rather not give Ippi with my lupus. He said since I am Braf + we should start there. Thank heaven for that 2nd test. He will consider Ippi if I become resistant to Zelbobraf. I encourage anyone who was tested neg early on for Braf to be retested with the more sensitive test available.
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