Anxiety was high as we all tried to anticipate what the oncologists would tell us. Would it be what we expected? More “wait and see” or would it be “we need to take immediate action”? On one hand we want to hurry up and fight the disease on the lungs and on the other hand why rush if there are no symptoms?
Answer? More tests.
… and then? More tests.
First, Dr. F and Dr. B couldn’t get over how well Jimi is feeling and looking. “You look absolutely amazing! Although, bikini season will be forever changed for you” – Dr. F.
His incision is looking healthy and healing well, Dr. C will be pleased when we go for the surgical review next week. In regards to his main “motherload” of a tumor, the worst of it has been taken out and for that we should be very grateful. Many people aren’t able to have their major tumor removed (yikes!). What we learned was all about information gathering for us the family and for them the doctors. They want to know everything they can before confirming a definite treatment plan and they want us to know about the options available. Jimi goes back on Thursday to be shot up with a special iodine like serum all day, then Friday has to lay in the scan for an hour and a half. This type of scan picks up the Pheochromocytoma active cells and will tell the current locations and point out if there are any additional locations. This will provide a different picture than the other scans have shown, new locations would mean they are likely old spots that are just registering on the scan now.
A radioisotope (MIBG, iodine-131-meta-iodobenzylguanidine) is injected into a vein. This compound attaches to specific tumor cells. Later that day (or the next day) you lie on a table that is positioned under the arm of the scanner. The abdomen is scanned. You may be asked to return for repeated scans for 1 – 3 days. Each scan takes 1 – 2 hours. Before or during the test, you may be given an iodine solution to prevent the thyroid from absorbing too much of the radioisotope.
Some of the options discussed in a quick overview were 1) surgery to resect locations 2) 3-drug chemotherapy (CVD) 3) clinical trial drug actually used for kidney cancer, but looks promising in pheochromocytoma patients 4) MIBG-I131 (treatment version of the scan he’s having Friday) and 5) neuroendocrine tumor receptor drug that reduces symptoms
Bummer news? Nothing cures it. We can only cling to getting to partial remission, but we knew that going in.
The main tumor was officially 14cm in diameter. The doctors feel it is unlikely that the softball size tumor was growing at an aggressive rate as Jimi didn’t feel pain from it impeding on his lung (it had partially collapsed his left lung) nor did he experience any dramatic onset of symptoms. Both doctors were like two kids in a candy shop when Jimi told them he had been diagnosed with tremors as a small child, a typical symptom of pheos, but since the surgery the tremors are now completely gone. (Now that his hands no longer shake he can’t wait to get back to the shooting range!) This information was “interesting, very interesting” to the oncologists and bodes well for the hope that the tumor is in fact very slow growing. Unfortunately, there is no way to find out the true start date of tumor growth, and going forward there will be serial scans to monitor potential new growth. There will be more tests… and then, more tests.
To start things off he had some blood drawn. The phlebotomist (pictured) had some pearls of wisdom for our young fighter, “You are very young, too young to be here. You have to sweat everyday, sweat, sweat, sweat, do it, do it, do it!” and “eat your vegetables, especially broccoli, no pork”. We left the oncology clinic with her words of encouragement, “You can do it, do it do it!”.
May we all take her advice, eat our vegetables and sweat everyday. The best revenge against cancer is living well.