Carla has had swelling in her ankles for over two weeks. She was very careful on our flights to St. Kitts/Nevis to get up periodically and walk as well as exercise her feet. Anyway, yesterday was her day to get her blood tests and the Velcade IV. The nurse saw the swollen right ankle and reported it to her doctor. We had to go back this morning for the ultrasound and it was positive for a blood clot. She was immediately admitted to Cox Hospital for Heparin IV. They plan to keep her at least two days to hopefully dissolve the clot.
It is hard for her to be inside on such a nice day and she feels fine except for the swelling.
Thursday, September 29, 2011
Sunday, June 12, 2011
Second Quarterly Checkup
Carla had her second quarterly checkup at the Myeloma Institute in Little Rock June 6 - 9. She had extensive blood tests, that painful bone marrow biopsy and a full-body MRI. The good news is her multiple myeloma is in full remission and they don't want to see her again for six months!
Her platelets, white blood cells and hemoglobin counts have been dropping steadily during the six months of maintenance. The doctor has decreased the Revlimid starting with her July dosage. The cycle is Revlimid daily for 21 days and then off 7 days. She has to have new shipment for each cycle and she had just received a shipment so she can not start the lower dose until the next cycle. With the price of these 21 pills being $7800 the insurance wants her to use up what she has before they send the lower dose pills.
A couple months ago, Carla was anxious to get plants potted in her flower pots. She did too much bending and lifting. She said her back "felt" different that night. Her local oncologist had her back x-rayed the next day but without other x-rays to compare they could only determine that nothing was loose. We took those x-rays with us to Little Rock and stayed over one more day in order for us to meet with the surgeon that had operated on Carla's back last November. He could find nothing wrong and thought it was muscle pain. He cautioned her to not bend her back. She finds it difficult to wait for someone to help her when she wants to get something done. She met with her pain doctor and the doctor did not change her dosage of pain meds.
It looks like we will continue the Revlimid cycle and the weekly visit to the oncologist for blood tests and the IV of Velcade. Hopefully once Carla gets the lower dosage of Revlimid her blood counts will increase along with her energy level.
Her platelets, white blood cells and hemoglobin counts have been dropping steadily during the six months of maintenance. The doctor has decreased the Revlimid starting with her July dosage. The cycle is Revlimid daily for 21 days and then off 7 days. She has to have new shipment for each cycle and she had just received a shipment so she can not start the lower dose until the next cycle. With the price of these 21 pills being $7800 the insurance wants her to use up what she has before they send the lower dose pills.
A couple months ago, Carla was anxious to get plants potted in her flower pots. She did too much bending and lifting. She said her back "felt" different that night. Her local oncologist had her back x-rayed the next day but without other x-rays to compare they could only determine that nothing was loose. We took those x-rays with us to Little Rock and stayed over one more day in order for us to meet with the surgeon that had operated on Carla's back last November. He could find nothing wrong and thought it was muscle pain. He cautioned her to not bend her back. She finds it difficult to wait for someone to help her when she wants to get something done. She met with her pain doctor and the doctor did not change her dosage of pain meds.
It looks like we will continue the Revlimid cycle and the weekly visit to the oncologist for blood tests and the IV of Velcade. Hopefully once Carla gets the lower dosage of Revlimid her blood counts will increase along with her energy level.
Tuesday, March 22, 2011
Maintenance Update
Carla has been having blood tests and a Velcade IV every Wednesday at Cox Hospital in Springfield. She has been doing well. Her blood counts have dropped but the Arkansas myeloma doctors say that is normal. She did feel well enough that we were able to visit Carla's mother and sister in California for a week in February.
Last week we went to Little Rock for three days of testing and meeting with doctors. She has a PET scan, a bone marrow biopsy and a full-body MRI. The myeloma doctor said the scans showed no new bone lesions and her old lesions were disappearing or getting smaller. Her pain doctor has started her on pain medication specifically for neuro-pain. They plan to decrease her oxycontin dosage. Currently she is ramping up the dosage of the new pain medication. The pain doctor felt the pain level was normal for four months out from major spine surgery. The spine surgeon thought her back was now strong enough for Carla to do most things as long as she didn't attempt to stoop or bend her back.
Basically we were encouraged by the test results and conferences with her three doctors. Carla's next quarterly check up will be in June. Until then, she will continue her weekly chemo sessions in Springfield. The blood samples for the myeloma markers will only be shipped to Little Rock once a month rather than the current two times per month.
We appreciate all the prayer support for Carla. We were able to rent one of the Home Away from Home apartments for the three nights we were in Little Rock. This was much better than going to a motel!
Carla is feeling well enough that she is busy landscaping our yard and getting on with the painting and minor remodeling jobs on our house that were postponed when she was diagnosed with multiple myeloma.
Last week we went to Little Rock for three days of testing and meeting with doctors. She has a PET scan, a bone marrow biopsy and a full-body MRI. The myeloma doctor said the scans showed no new bone lesions and her old lesions were disappearing or getting smaller. Her pain doctor has started her on pain medication specifically for neuro-pain. They plan to decrease her oxycontin dosage. Currently she is ramping up the dosage of the new pain medication. The pain doctor felt the pain level was normal for four months out from major spine surgery. The spine surgeon thought her back was now strong enough for Carla to do most things as long as she didn't attempt to stoop or bend her back.
Basically we were encouraged by the test results and conferences with her three doctors. Carla's next quarterly check up will be in June. Until then, she will continue her weekly chemo sessions in Springfield. The blood samples for the myeloma markers will only be shipped to Little Rock once a month rather than the current two times per month.
We appreciate all the prayer support for Carla. We were able to rent one of the Home Away from Home apartments for the three nights we were in Little Rock. This was much better than going to a motel!
Carla is feeling well enough that she is busy landscaping our yard and getting on with the painting and minor remodeling jobs on our house that were postponed when she was diagnosed with multiple myeloma.
Saturday, December 11, 2010
Home Again, Home Again
We were able to move from our apartment to another Home Away From Home apartment that was only about a block away. We packed the car in such a way so we could unload only what we needed for one night. A group of about 20 middle school kids from The Little Rock Church which sponsors the Home Away from Home program came by caroling Sunday night. They also gave us some coffee mugs with Christmas goodies. For us being able to use the two apartments was our Christmas gift.
Carla met with another myeloma doctor on Monday and detailed the maintenance plan. The doctor thought Carla's blood tests showed she was ready to be dismissed. Carla tolerated the trip home even though we were delayed just north of Clinton, AR for about an hour due to a four fatality car wreck.
Miss Kitty welcomed us home. She stuck close to us as she had been home alone for just over two weeks. Carla gained strength each day and Tuesday night settled in the recliner to attempt to crochet another hat. Missy Kitty attempted to get as close to her as possible as shown in this picture.
Carla asked her primary-care doctor on Wednesday to remove her stitches. This doctor got back with us on Friday and notified us that she would not remove the stitches due to liability concerns. Carla's oncologist could not tell us if he could take them out as he was out of his office until Tuesday. Finally we went to the Urgent Care and got the stitches removed. Her incision is healing nicely.
Carla will meet with her Springfield oncologist this coming week. They will line out the dates and times for her maintenance. Basically we hope to have the Revlimid drugs delivered to her home by December 20. She will take the Revlimid pills for 21 days and then not take them for 7 days. During each 28 day cycle Carla will get an infusion of the drug Velcade at the oncologist's clinic. She will take dexametasone pill each day she get Velcade. She will have to get her blood tested each week before they can give her the Velcade. While taking the Revlimid she will also take daily aspirin to ward off blood clots.
Basically this will be the maintenance schedule for the next three years. The Velcade infusions can be weekly plus or minus 1 or 2 days. This will keep Carla tethered and limit our trips to not more than a week as she needs to get the Velcade in Springfield.
The Myeloma Clinic will need Carla to return to Little Rock every three months for PET scans and bone marrow biopsies. This means we don't have to return to Little Rock until the end of March, 2011!
Carla met with another myeloma doctor on Monday and detailed the maintenance plan. The doctor thought Carla's blood tests showed she was ready to be dismissed. Carla tolerated the trip home even though we were delayed just north of Clinton, AR for about an hour due to a four fatality car wreck.
Miss Kitty welcomed us home. She stuck close to us as she had been home alone for just over two weeks. Carla gained strength each day and Tuesday night settled in the recliner to attempt to crochet another hat. Missy Kitty attempted to get as close to her as possible as shown in this picture.
Carla asked her primary-care doctor on Wednesday to remove her stitches. This doctor got back with us on Friday and notified us that she would not remove the stitches due to liability concerns. Carla's oncologist could not tell us if he could take them out as he was out of his office until Tuesday. Finally we went to the Urgent Care and got the stitches removed. Her incision is healing nicely.
Carla will meet with her Springfield oncologist this coming week. They will line out the dates and times for her maintenance. Basically we hope to have the Revlimid drugs delivered to her home by December 20. She will take the Revlimid pills for 21 days and then not take them for 7 days. During each 28 day cycle Carla will get an infusion of the drug Velcade at the oncologist's clinic. She will take dexametasone pill each day she get Velcade. She will have to get her blood tested each week before they can give her the Velcade. While taking the Revlimid she will also take daily aspirin to ward off blood clots.
Basically this will be the maintenance schedule for the next three years. The Velcade infusions can be weekly plus or minus 1 or 2 days. This will keep Carla tethered and limit our trips to not more than a week as she needs to get the Velcade in Springfield.
The Myeloma Clinic will need Carla to return to Little Rock every three months for PET scans and bone marrow biopsies. This means we don't have to return to Little Rock until the end of March, 2011!
Saturday, December 4, 2010
Doctor's Appointment Moved to Monday!
Carla got a good report from the infectious disease physician and we have worked with a research nurse to enable Carla to be seen by a Dr. Waheed on Monday instead of waiting for Dr. Barlogie on Thursday. Dr. Waheed is one of the newer doctors in the Myeloma Institue. The research nurse got Dr. Barlogie to approve this move. Carla is scheduled to see Dr. Waheed at 11:00 Monday.
We have been monitoring Carla's blood results. The CRP level can be an indicator of possible infection. Yesterday's CRP level was down to 13 with the normal range being 0 - 10. Yes, it was slightly elevated but I think it will be back to normal by Monday.
We have to clean our apartment and move out by 2:00 p.m. tomorrow as the patient we have been sub-leasing from will be moving in at 2:30. Home Away From Home did have a patient move out of another apartment. This patient has kept the apartment rented during their brief trip home. We plan to move into that apartment tomorrow afternoon and sub-lease it by the night. We hope we can head home Monday afternoon. If for some reason we still have to stay longer, we can still have a comfortable place to stay.
We have been monitoring Carla's blood results. The CRP level can be an indicator of possible infection. Yesterday's CRP level was down to 13 with the normal range being 0 - 10. Yes, it was slightly elevated but I think it will be back to normal by Monday.
Monday, November 29, 2010
Little Rock Stay Extended
We were unable to control Carla's pain with the meds prescribed on her hospital dismissal. We called the surgeon's office and talked to one of his residents. Basically they said they weren't responsible now that she was out of the hospital. They wanted us to contact her primary care physician back in Springfield.
We saw Dr. Barlogie this afternoon. Once he saw Carla's condition, he wouldn't talk to us about myeloma maintenance. He said she should not have been dismissed from the hospital. He told her to take oxycodone for break-through pain and he got her an appointment with the pain doctor in the Cancer Center tomorrow morning. He is trying to get her an appointment with an infectious disease doctor as he was concerned about her CRP being so high and her blood counts so low. He wants her to have blood drawn daily so they can monitor her better. He doesn't want us to leave Little Rock until after we see him on December 10th. If she is better then, he will talk about maintenance.
Now we have to wait and see how this week progresses and see about where to stay once our sub-lease expires this Sunday.
We saw Dr. Barlogie this afternoon. Once he saw Carla's condition, he wouldn't talk to us about myeloma maintenance. He said she should not have been dismissed from the hospital. He told her to take oxycodone for break-through pain and he got her an appointment with the pain doctor in the Cancer Center tomorrow morning. He is trying to get her an appointment with an infectious disease doctor as he was concerned about her CRP being so high and her blood counts so low. He wants her to have blood drawn daily so they can monitor her better. He doesn't want us to leave Little Rock until after we see him on December 10th. If she is better then, he will talk about maintenance.
Now we have to wait and see how this week progresses and see about where to stay once our sub-lease expires this Sunday.
Sunday, November 28, 2010
Dismissed from the hospital
Carla was dismissed from the hospital this afternoon. She is now settled into the bed in our apartment. She still has a lot of pain but seems to be doing OK. Hopefully she will be able to make her 2:00 appointment with Dr. Barlogie. I am going to attempt to get it cleared at the clinic ahead of time so she can be wheeled directly to the top doc and not have to spent time in the waiting room. Dr. Barlogie told us to do that this time.
Carla was coughing up some mucus tonight and I feel like I am coming down with a cold. Hopefully a good night's sleep in the quiet apartment will help both of us.
Carla was coughing up some mucus tonight and I feel like I am coming down with a cold. Hopefully a good night's sleep in the quiet apartment will help both of us.
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