We finally got the formal written results of Doug's PET scan that was done on July 1. There was a delay in getting the previous PET scan for comparison. There are new bone lesions in the left mastoid, right sternoclavicular joint, right anterior 2nd rib, right 7th rib, distal right and left humeri.
Plus a 1.8 x 1.3 cm cervical lymph node on the left side of his neck. We knew it was there.
We knew from the rising blood markers there was something going on, but we didn't know the extent of the new bone lesions. We feel very fortunate that Doug is not having any pain.
Now that there is proof of a CRAB symptom the specialist will finally put Doug on a new drug combo. We don't see the Denver specialist until Aug 20. Meanwhile Doug is busy getting chores done while he still feels good.
This part of the myeloma journey is still a relatively smooth road, although we can see storm clouds ahead.
We went on a beautiful mountain drive a few days ago with friends. Saw lots of very pretty wildflowers, spotted a marmot sunning himself on a rock but weren't able to get a good photo. We stopped for lunch at the Mango cafe in the tiny town of Red Cliff. Very good quesadillas and hamburgers. We went over Shrine pass. The road was a bit rough but the views made it worth the drive. Great day.
My ankle is doing well. I have an excellent physical therapist who is really putting me through the hoops. I think my PT will be finished soon.
Love to all.
Saturday, July 26, 2014
Monday, July 14, 2014
New Bone Lesions - Relapse # 2
We got a phone call today from the myeloma specialist's nurse navigator. The PET scan shows increased activity, which means there are new bone lesions. This is pretty much what we suspected, so its no shock. But it is Doug's second relapse.
Doug is to stay on Revlimid for now, but there will be a drug therapy change the next time we see the specialist. We have been prepared for that. Doug has an appointment for August 20.
Doug's rib pain is much less now. He feels pretty good and has been doing a lot around the house, like cleaning out the garage and pressure washing the deck in preparation for staining it. I think he is trying to get as much done as he can, since he may not feel like it when the new side effects hit. He has also been volunteering on our church's building maintenance committee.
It took two weeks to get the PET scan results; we were not surprised as we know there is usually a communication problem between two different hospital systems. The scan was done at our local clinic. Results were delayed in getting to the specialist. We think we know where the problem lies, but it was worth it to avoid another trip into Denver to get the scan done there. The radiologists in Denver review and compare the new scan to the older one, so we are not dependent on the local radiologist's expertise (or lack of).
There has been a development on the nephrology front. The clinic in Fairplay abruptly closed with no advance warning to the physician, staff or patients. One day they were in business, the next day computers and furniture were being moved out. The physician, who was Doug's nephrologist, did not even get access to her patient records. In our opinion, the clinic owners, who own a chain of clinics, acted in a horribly unprofessional manner. The physician put a notice in the Fairplay newspaper, stating that she would like to continue providing care to her patients but has no way to handle insurance, no building, and cannot open a private practice due to her own health concerns. She did give a phone number to contact the clinic owners to obtain our records. We have done so.
We have a lead on a nephrologist who is to start practicing locally; we hope that works out. If we like him it would be nice to avoid the big city.
Fortunately Doug's kidney disease has been stable so he doesn't need a nephrologist immediately.
My ankle is healing nicely from the torn ligament. Having the cast off is a huge relief! I am going to physical therapy and strengthening the ankle and starting to get flexibility back. I am gradually able to resume my activities.
We are living in the moment, enjoying our friends and family and our two little dogs. We know that whatever is ahead, we are held in God's hands.
Love to all.
I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Doug is to stay on Revlimid for now, but there will be a drug therapy change the next time we see the specialist. We have been prepared for that. Doug has an appointment for August 20.
Doug's rib pain is much less now. He feels pretty good and has been doing a lot around the house, like cleaning out the garage and pressure washing the deck in preparation for staining it. I think he is trying to get as much done as he can, since he may not feel like it when the new side effects hit. He has also been volunteering on our church's building maintenance committee.
It took two weeks to get the PET scan results; we were not surprised as we know there is usually a communication problem between two different hospital systems. The scan was done at our local clinic. Results were delayed in getting to the specialist. We think we know where the problem lies, but it was worth it to avoid another trip into Denver to get the scan done there. The radiologists in Denver review and compare the new scan to the older one, so we are not dependent on the local radiologist's expertise (or lack of).
There has been a development on the nephrology front. The clinic in Fairplay abruptly closed with no advance warning to the physician, staff or patients. One day they were in business, the next day computers and furniture were being moved out. The physician, who was Doug's nephrologist, did not even get access to her patient records. In our opinion, the clinic owners, who own a chain of clinics, acted in a horribly unprofessional manner. The physician put a notice in the Fairplay newspaper, stating that she would like to continue providing care to her patients but has no way to handle insurance, no building, and cannot open a private practice due to her own health concerns. She did give a phone number to contact the clinic owners to obtain our records. We have done so.
We have a lead on a nephrologist who is to start practicing locally; we hope that works out. If we like him it would be nice to avoid the big city.
Fortunately Doug's kidney disease has been stable so he doesn't need a nephrologist immediately.
My ankle is healing nicely from the torn ligament. Having the cast off is a huge relief! I am going to physical therapy and strengthening the ankle and starting to get flexibility back. I am gradually able to resume my activities.
We are living in the moment, enjoying our friends and family and our two little dogs. We know that whatever is ahead, we are held in God's hands.
Love to all.
I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
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