Last week, we heard news that the doctors were kind of puzzled by John's scans. The MRI report showed no cancer, the PET showed activity in nose and neck. Monday morning a team of doctors (including two sarcoma radiation oncologists, an interventional radiologist, an orthopedic surgeon specializing in sarcoma, Dr Wright, and a couple more) reviewed the scan reports as well as the scans. Dr. Wright said that after reading the reports, she looked at the scans and wasn't worried about John having any cancer left. She said based on the report, she was underwhelmed when she saw the scans. The activity the report mentioned on the PET was very hard to find on the scans. The NP said that the overall consensus in the room of doctors was that there was no worry about any cancer being left behind. She said there was some dispute about removing the residual tumor in John's nose. The ENT said that it was a minor surgery that could be easily done, but he doesn't think it's necessary as it won't change anything in John's overall cancer picture. Some of the doctors thought if it was so easy then it should just be done. They ended up leaving the decision to John. Possibly the only side effect would be a risk of losing his sense of smell, so we decided not to do anything with it for now.
Although the doctors think the cancer is probably gone, the scans did show some activity of something, so they can't say for sure that it is gone. Something could mean an infection, post-radiation activity, nothing, or recurrent cancer. Typically our schedule would be scans every three months, but since these scans didn't show for sure that there was nothing left, we are doing scans in six weeks to re-evaluate and hopefully confirm the hope that the cancer is actually gone!
Thank you everyone for your love and support!
Tuesday, June 23, 2015
Friday, June 12, 2015
Eating
John has had two meals by mouth this week! A burger from McDonald's earlier this week and tonight some scrambled eggs with a burrito. He has been having green drinks zero to three times a week for the past month, as well as occasionally trying bites of different things. Until this week, it's only been a bite here and there, so it's pretty exciting that he ate two whole meals! He said that the eggs were not disgusting and that that is his new level for something to taste good. The chemo made most things taste disgusting. Earlier in treatment, that side effect only lasted a few days. After his last dose, this is about how long it has taken to get over that side effect.
He has started feeling a little closer to normal this week, but he does still run out of energy pretty fast. He went to work for almost a full day earlier this week, but he was pretty wiped out when he got home. The boys asked when dad was going to get out of bed and they weren't sure how to react when I said that he wasn't in bed, he was at work.
Next week, we are going to start working on small steps to help regain some of John's strength. We are also going to have scans on Monday and finally know for sure if all the tumors are all gone. If the tumors are gone, then the port can come out at the next doctor appointment. He won't need sedation or anything, they'll just take it out in the doctor's office. His feeding tube will still stay in though - AT LEAST until he is eating 2400 calories/day by mouth, possibly until he has gained a certain amount of weight back.
June 15th are the scans. We should know the results some time on the 17th!
He has started feeling a little closer to normal this week, but he does still run out of energy pretty fast. He went to work for almost a full day earlier this week, but he was pretty wiped out when he got home. The boys asked when dad was going to get out of bed and they weren't sure how to react when I said that he wasn't in bed, he was at work.
Next week, we are going to start working on small steps to help regain some of John's strength. We are also going to have scans on Monday and finally know for sure if all the tumors are all gone. If the tumors are gone, then the port can come out at the next doctor appointment. He won't need sedation or anything, they'll just take it out in the doctor's office. His feeding tube will still stay in though - AT LEAST until he is eating 2400 calories/day by mouth, possibly until he has gained a certain amount of weight back.
June 15th are the scans. We should know the results some time on the 17th!
Monday, June 1, 2015
June
John had a hard time recovering from his last dose of chemo. He was starting to get better from it and then he got mouth sores again. Ugh! Luckily it doesn't interfere with his eating since he is still using his feeding tube, but talking is painful right now. His immune system blood counts are still really low as of today. Once his counts recover, then his mouth sores should go away pretty quick. By the end of this week, John's counts should be recovered and we won't have to worry about any more hospitalizations! (While his counts are still low, there is a possibility of another fever that he would need to be in the hospital to get antibiotics.) Another blood test on Thursday will hopefully show that his immune system is back. Here is a picture of his last dose of chemo and his lifetime max of doxorubicin getting pushed into his veins.
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