Sorry to have left anyone hanging after that last post. We did have the CT Scans and the followup appointment with Dr Keller. Looks like the break was a good idea. The tumors are mostly stable, so we are pleased with that. The ones in the lungs are very stable, the largest just 1cm. The tumors in the adrenal gland and kidney are the most troublesome, they are 2.5-3.5 cm. Even though there's no sign of either adrenal insufficiency or kidney failure, neither would be a good thing. So we decided to do the following:
1. Started Votrient, one of the VEGF Targeted Therapy drugs, on March 12. Its in a pill form, so he won't have to do IVs which is nice. So far the side effects have been what we expected - fatigue, queasiness, the usually crudiness.
2. We met with Dr Jason Cook, our urologist, to discuss the options for surgery, specifically a partial nephrectomy, and most likely adrenalectomy. He said while he could do the surgery, he wouldn't recommend it, based on quality of life issues. He suggested we make an appointment at MD Anderson for them to take a look. In his words, "most people don't live this long with your diagnosis," so he thought they might have seen a case like ours. I guess that was good news... We haven't made the appointment yet because of #3.
3. We mentioned to Dr Keller that Bobby had noticed a new pain in his neck and some headaches, so he ordered a neck MRI to make sure there was no cancer in the bones. The head, chest and abdomen have all been checked, might as well be thorough and check the neck. Well, surprisingly (or maybe we shouldn't be surprised anymore when things come out of left field) he has a dislocated vertebrae and slipped disk causing "severe cord compression at C4-C5" Basically, the spinal cord is being pinched. Remarkably, the pain is manageable, he's just trying not to put added stress by heavy lifting or strenuous exercise. Oh, and a car accident or falling off his bike would be very bad.
So neck surgery is next on tap, currently scheduled for Tuesday, April 23rd. Dr Fell, the neurosurgeon will do the surgery. He'll be in the hospital overnight, then home recuperating. We had to discontinue the Votrient for two weeks before & two weeks after surgery due to bleeding risk. The silver lining is that the timing has been good. We had a trip to Hilton Head, SC scheduled and after the MRI thought we'd have to cancel, but Dr Fell gave us the green light, and we were able to get away last week for a relaxing, fun time with some great friends.
Sorry to be so sporadic with the updates, we truly appreciate you for checking up on us and praying for us as we journey on down this winding road.
Love, Juli
3 comments:
So glad to get an update. Praying that the surgery will go well - praising God that the docs can take care of this. Bobby continues to be a testimony to so many of us - he's our Energizer bunny! We've told the story so many times about him riding his bike on his birthday for many, many miles (can't even remember how many) and Jay and I were high-5ing for doing ten! Talk about being humbled! Happy that you had your time in Hilton Head. We're expecting continued good reports -and know that the folks at MD Anderson will be amazed at Bobby's tenacity. Always praying. Love you both...
Thanks for the update, you both are still on the prayer list.
So glad to see a new posting and glad that there is a plan. We are happy that you got a chance to spend time with friends last week. Coincidentally we got to do the same and found it a good chance to "recharge". We will be thinking of you tomorrow and praying for a smooth and successful surgery. We will be watching for an update post. Love to you both, Jane and Gil
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