Posted 9/3/2014 7:57 AM (GMT -6)
Hello All....Have not seen anyone posting on this thread in awhile, really my posting was the last one.
Anyway, my last posting of 08/10/14, we were in a "better place", but not for long I'm afraid. When we met with the new medical oncologist, I had the brochure for Xofigo/Radium223 (which I had for the Vanderbilt oncologist as well, but he just negated any treatment with that medication, saying that they didn't prescribe that treatment regimen & offered morphine prescriptions instead). New oncologist said that was what she was going to recommend and that their office in the Nashville proper area did this treatment, and that Ted was a perfect candidate. He was also very low on iron (we had gone to a PCP and had multiple blood work-up's completed), score was 26, so they gave him an iron infusion that same day and scheduled for another one a week after. The following week, August 14, went back for the second iron infusion, along with his Xgeva and Trelstar injections. Came back home and after a day or two, Ted was in so much pain (arms, shoulders, back), Took his (generic) lortabs every 4 to 6 hours (sometimes sooner), and the pain only eased, no appetite, again eating very little, losing weight (at least a couple of pounds a week), sleeping most of the time, could hardly walk around and getting up and down was getting harder, fatigue was unbelievable. Mentioned to him about how sometimes the Xgeva injection causes joint pain, but he has been on this medication for almost two years and had not experienced any joint pain in awhile, but did when he first started the injections. Well, here we go, all of these symptoms, we are thinking the end is near. Called doctor's office, they suggested to increase the Fentanyl patch to 50, and advised them that he was taking the lortabs about every 4 hours, just to ease the pain (which it did some of the time).
Ted had consultation with the radiation oncologist on the 20th, who would do the injection of Xogifo/Radium 223. Very pleasant and informative visit. Doctor spoke to Ted very specifically, explained everything in great detail, stating that he would have six monthly injections with blood work completed one week prior to injection schedule. Ted and I were aware of all possible side effects, also understood that this medication had a pain reducing element, so we were hoping for the best results. Blood work had been completed prior to this injection visit, so all was a "go" for Thursday, the 28th. Son from Savannah was coming that next day, other son lives here in town, so we were expecting Ted to be in the same "terrible" condition he has been in since the 14th of August for his visit. Ted woke up that next morning Friday with very minimal pain and as of today, taking only taking a few lortabs (not experiencing much pain at all), able to get up and down without so much difficulty, and started eating like a "horse". I believe the Lord has given us our miracle, even if it's for only a few month's.
This is my "tidbit" of news and hoping everyone else is doing "the best that they can". Concerned about Rob (Gizzy'n me). His last posting on "Jevtana and beyond" did not sound good. Wish there was someone in that area (I think Chicago) could help him, I understand that there are not many family members available. He has been such a strong "warrior" and I want him to continue fighting. We've lost so many "warrior's" over these last few years, since I found this site. and I feel that we will continue to do so, until we can find a cure for this disease..............our "warrior's" have so many battles to fight within this disease, it get harder and harder to continue.
Peace, Love and Hope to ALL