Caring Bridge UPDATE
UPDATE: APRIL 2, 2014 about 5.30 PM CDST
Radiation Update
5 hours ago
Radiation began last Thursday along with yet another increase in pain meds. Good news is that Paul has completed five of the now 20 scheduled treatments. More good news is that pain is now controlled, and he is cutting back on his pain meds. I guess I didn't clarify before but this mass (even though it is soft and not in the bone) is believed to be related to the multiple myeloma. Three doctors said they were 99+% sure it was myeloma and not a secondary cancer, so they advised against a biopsy. That's all great news! However, he has has been feeling very sick, hot/cold, no temperature....no explanation. He had labs on Monday, but they showed nothing conclusive. His hemoglobin shows he is more anemic than usual, but not really enough to cause the way he is feeling. It could possibly be related to how quickly the tumor is dying...yay! Or it could possibly be due to some infection with the port...boo. But again, blood work does not indicate that. More extensive labs on Friday if this continues. He has also lost 10 lbs in two weeks which is a concern.
You might also check out a couple of new pictures that we posted. Christmas morning with Amy and Aaron's two, Calvin (6) and Stella (4), and Andrew and Kim's son, Henry (14 months). Also, our newest grandchild, Eleanor (10 days).
Thanks again for your prayers and support.
Paul and Linda
UPDATE: March 21, 2014 about 8.30 PM CDST
22 minutes ago
The great news today is that Paul was discharged from the hospital, and that a treatment plan has been proposed. The doctor at the hospital consulted with Paul's hematologist who is out on maternity leave. As we have experienced before, depending on Paul's response, the plan could change. Paul has an appointment next Friday with a radiation oncologist who will hopefully eradicate the tumor. The stent that was placed yesterday from the kidney to the bladder should relieve some of the pain there. However, the tumor is also wrapped around the sciatic nerve, so until the tumor is gone Paul will continue to have the pain down his leg. That pain has lessened greatly since he was hospitalized since he has been in bed or sitting so much. So he will have to minimize bring on his feet to hopefully help control that pain.
Paul has been on maintenance chemo since shortly after his second transplant. That obviously has quit working, so a different two drug combo will be started after the radiation is completed. It is a combination that he was on previously when he participated in a clinical trial at Mayo Clinic about 3.5 years ago. He relapsed on that after 10 months. Sometimes a drug that you were on previously will work again after being off of it for awhile.
So, the good news is that he is home, there is a plan, and he is feeling pretty good right now. Paul says the bad news is that he will be having daily radiation during crappie season.
Thanks for the prayers and concern, they are appreciated so much. Linda Walker...
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Another Bump in the Road
March 20, 2014
19 minutes ago
Unfortunately, it's time to write a CaringBridge post again. Just wanted to update you on Paul's status. He had his two year post transplant appointment in February. All tests looked good. About the first of March he started developing pelvic/leg pain that became increasingly more painful. Also, his monthly multiple myeloma labs showed a very slight increase in his cancer numbers. For most patients the small increase wouldn't be a big concern, just something to keep your eye on for a trend upward. With Paul, however, usually a small increase in those monthly labs means there is something bigger going on in his bones or elsewhere. His doctor ordered a PET scan, MRI, and bone marrow biopsy for last week. She also tweaked his treatment plan. I left for Colorado Springs because our newest grandchild was to be born. Paul stayed home for tests and weekly treatment. The leg and pelvic pain continued to worsen and Paul had to rely on oxycodone for pain relief. On Tuesday morning of this week, Paul called our neighbor to take him to the doctor because he had woken up with severe pain in the right abdominal area. His primary care physician sent him to Olathe Medical Center for a CT scan. It was discovered that he had a plum/peach sized tumor causing a partial obstruction of the right ureter causing backup of urine and dilation of the kidney. The tumor was also wrapped around the sciatic nerve which was what caused the leg and pelvic pain. He was admitted in Olathe on Tuesday. He was transferred to KU on Wednesday which is where all of his cancer treatment has been. Many tests were ordered and today a stent was put in from the kidney to the bladder to open things up. The stent will be in at least three months. It will be in be until the tumor is eradicated by radiation or some other treatment. He is having a porta cath placed today just below his collarbone. This will eliminate all of the "sticks" for IVs and blood draws. It will be below the skin and leading to the heart. It will be used permanently.
The doctor says Paul will be in the hospital until Friday or Saturday, possibly longer. They want to make sure there is no infection and that the pain is under control. A new treatment plan also needs to be decided upon. Paul's doctor is now out on maternity leave, so the staff doctor on this floor is going to consult with her.
Now for some good news. I've been out in Colorado Springs because Amy gave birth to our fourth grandchild, Eleanor Catherine, on Saturday, March 15. Unfortunately, that meant that I was gone when Paul went to the hospital. Our wonder neighbors took good care of him and kept me informed. And, my wonderful son in law drove me back to Kansas City on Tuesday night/Wednesday morning. And, my wonderful daughter gave up her husband for this when she was home with a three day old infant, a six year old, and a four year old.
Please keep us in your thoughts and prayers.
Linda and Paul
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