Will's resection took place in Jan 2013. A 10 cm circle, 4 cm deep, was removed from his left lower back, the right side had to be cut to close the left side, and his right leg was used as a donor site for a skin graft. Scans every 3 months have been more difficult because of the lung nodules that are uncertain and "prominent" lymph nodes. I would love any insight you have on your experience with lung nodules.
Are his lung nodules stable?
Although the size of existing nodules does not change, there are several new ones. "Ground glass attenuation with halo affect" is what the scans showed. Last Sept. 10+ new nodules showed up so they put him on sporanox for 6 weeks which made him throw up all day long ... but many of the nodules disappeared. I'm just wondering in most people see new nodules every three months. Do you have a guess?
Elodie Espesset said:
Are his lung nodules stable?
Sporanox is for fungal infections. It sounds like the doctors don't think the nodules are metastases? I'd be worried too though :-( May be, a second opinion from a major sarcoma center would be worth it?
I have three small nodules that that we're keeping an eye on. Three disappeared with high dose ifex! I have another scan Friday, God willing they are either gone or stable. I've heard that some live with stable nodules for several years. Good luck with everything.
How did your scans go? I was on vacation but thought about you several times. You said "small" nodules. How many mm or cm is small? Will's nodules are around 4 mm which is why nothing has been done yet.
Aperez said:
I have three small nodules that that we're keeping an eye on. Three disappeared with high dose ifex! I have another scan Friday, God willing they are either gone or stable. I've heard that some live with stable nodules for several years. Good luck with everything.
Hello! Thank you for thinking of me. My scan was not good! I have growth in all three tumors and have new tumors. My largest is now 5 cm. I visited Moffitt and they recommend chemo plus a Morab clinical trial. How is your husband doing?
Elodie- do you have any thoughts on Moffitt? I’m visiting Memorial Sloan for yet another third opinion. Really nervous about how quickly they grew. They all doubled in size!
I am very sorry to hear your news. I will keep track of your treatment and will continue to pray that there is improvement. My 12-year-old son actually has the cancer and his next scans are in June. He continues to have new nodules on each scan, and they are very small. I hope others have good advice on Moffitt and treatment options for you. Many blessings!
Hello Myhusband went to Sloan Kettering last yearhad for his chemo and surgeryfor initial tumor. Was free of mets for about 8 months and now he has mets in the lung. We in live Fl and chose to go to Moffit for chemo. Moffit is conveiniet and the care was in par with Sloan.
Aperez said:
Hello! Thank you for thinking of me. My scan was not good! I have growth in all three tumors and have new tumors. My largest is now 5 cm. I visited Moffitt and they recommend chemo plus a Morab clinical trial. How is your husband doing?
Elodie- do you have any thoughts on Moffitt? I'm visiting Memorial Sloan for yet another third opinion. Really nervous about how quickly they grew. They all doubled in size!
Sorry to hear about the bad news :-( I don't have any personal experience with Moffitt but I did notice that many sarcoma patients from Florida go there and I never heard anything negative about Moffitt. Of course Sloan may have additional trials to offer so it's worth investigating. MD Anderson also holds a lot of the sarcoma trials and is another place worth consulting. More chemo makes sense since your nodules were sensitive to it. But I know it's been hard for you in the past and it won't get any easier probably :-(
Aperez said:
Hello! Thank you for thinking of me. My scan was not good! I have growth in all three tumors and have new tumors. My largest is now 5 cm. I visited Moffitt and they recommend chemo plus a Morab clinical trial. How is your husband doing?
Elodie- do you have any thoughts on Moffitt? I'm visiting Memorial Sloan for yet another third opinion. Really nervous about how quickly they grew. They all doubled in size!