Joe listened to his body today by resting most of the day and even taking a three hour nap on a dreary gray rainy day and night in Georgia. Winter is the rainy time of the year in Georgia that rises our lakes that supply our water in the thirsty growing, sprawling city of Atlanta.
Last week I had called Caremark Specialty Drugs to refill Joe's Neupogin which is used to boost the growth of healthy white blood cells after the chemo eats the bad and good ones. It is sent in a refrigerated Styrofoam package to keep the prefilled syringes fresh. There was a snag. United Health Care was requiring it to be pre-approved again which I suppose it was because it is a new year. The drug should had arrived last Thursday but there was a bottleneck between the doctor's office and Caremark. Today I got the both talking to each other to break the bottleneck. The drug will be here tomorrow. One must continue to stay on top of things all the time. Yes, that can be stressful but the results can be life saving.
Joe had left his favorite yellow Alaska jacket somewhere yesterday so this morning we went back to all the places we visited yesterday to track it down. Joe would drop me off at the front door of the visited places and I would run in and so a search and rescue. Finally, we found his jacket at the very first place we stopped at before I had dropped him off yesterday at Winship/Emory to get his blood tested. Yep, he left it at Panera Bread. The manager had it in his office. When I hopped back into his beloved red Ford pick up truck, he smiled from ear to ear. Joe loves that jacket. It is just the right weight for the winter weather in Georgia.
About 4PM this afternoon we got an unexpected phone call from Dr. Winton at Winship/Emory. He told us that Emory had no cytarabine which is one of the chemo drugs used in HyperCVAD-R Part B. There is a shortage of the drug and is on back order all over the country. There are three companies that produce the drug. On the FDA website that lists drug shortages it stated on two of the drug companies that there are manufacturing issues. The other company stated there was raw material issues. I had read in the last month that there was also a shortage of Doxorubicin which is nicknamed the "Red Devil". It is also used in Part B of Joe's chemo regimen. This shortage affects thousands of people taking chemo for cancer, not just Joe. I am very skeptical of the shortage and concern whether the drug companies are manipulating the supply and demand to raise the costs which in turn would raise their profits. I pray that I am wrong about this. I contacted the Leukemia and Lymphoma Society and asked them if they were aware of the shortage and they are. They suggested I call Bedford Pharmaceuticals tomorrow and make the inquiry. You know I will and I report what they say which will be probably a canned prescript response.
Impressively Dr. Winton called Dr. Romaguera at MD Anderson Cancer Center to discuss the cytarabine drug shortage. Romaguera was unaware if there was a shortage at MDACC. Romaguera was the doctor who developed the successful chemotherapy for Mantle Cell Lymphoma. Romaguera told Winton that he had no issue of Joe getting Part A again starting this Thursday and Joe would do just fine with that. He stated there are some patients who do not tolerate Part B and just did Part A and they were able to get them into remission. Winton wanted to get out OK on it and we were fine with it especially since he consulted with Romaguera, the expert.
Winton also discussed with Romaguera Joe's seizure on 1/21 from the low phosphorus levels since he had never seen that happened before. Romaguera also stated that he had not either with any of his patients. He looked back on Joe's phosphorus graphs at MDACC and found out that happened once before with Joe on day 13 after the start of chemo which is exactly the day it happened at Emory. They both think it is because of Joe's other rare blood bone marrow disease called Myelofibrosis. They think after the chemo the bone marrow is overworking producing blood that it feeding off of the phosphorus at high levels depleting it. With giving Joe a phosphorus supplement starting on day 8 of the chemo regimen should replace the needed phosphorus. Both doctors are learning so much from Joe's medical case since it is extremely rare to have both mantle cell lymphoma and myelofibrosis. As far as they know, Joe is the only one who has that combination right now. Yep, Joe is a rare breed and his case will surely be written up in the medical journals.
I had no intention of writing the blog tonight but I thought that this was an interesting development that was worth an update. It is easier to remember details if I write it down right away and this was important information to share.
Ciao!
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