I’ve gathered my questions into clusters and sent the first batch to Dr. Jahan. If the scans indicate tumor growth, then we can use these questions as a starting point to talk about my next treatments. If the tumors are not growing, then I have a pain management issue. We’ll find out in a little more than a week.
Here are the questions that I’ve sent to Dr. Jahan:
- What are alternate treatments to the five day regimen of Ifosfomide and Doxyrubicin?
- What are the high-level overviews of each treatment (how administered, duration of treatment, side effects, effectiveness of treatment, other key statistics)
- What is the best next step given my current tumor size and growth from last scan?
Pain Management options:
- What is a good supplement to my current 150 mcg of Fentanyl for breakthrough pain management? At this time, I have 15mgs of Morphine Sulphate tablets for breakthrough medication. One pill doesn't do much to relieve pain. Should I try using Percoset? Note: I have also sent this question to my primary care physician, Lisa Capaldini, for her consideration.
- My ideal breakthrough medication would (1) kick in within an hour (2) remove most pain without making me too groggy (3) start to ease off after 3 to 5 hours.
Impact of the Growing Pelvic Tumor:
- If the tumor continues to grow, how will this impact my ability to walk?
What will be affected? The muscle in my leg that the tumor has grown into? The size of the tumor that may affect my ability to move my leg?
- What happens to people with tumors that grow in the pelvis? Do they become wheelchair-dependent?
- What’s the long term impact on my ability to urinate and have bowel movements?
Impact of the Lung Tumors:
- What is the status of the spots on the lungs?
- My understanding is that these lung tumors would be my cause of death since the lungs are a vital organ whereas the pelvic tumor is not likely to kill me. Is this correct?
- What is the prognosis for the lung spots?
And then we'll put the answers to these question together to get a sense of how much longer I can expect to live. This will be a guess, of course. However, it's an important estimate because I can start planning my life with more probability. Until now, my basic assumption has been that I'll get better so life can continue per usual. I no longer believe that to be true.