After my last post I indicated I was going down to La Jolla for a bone marrow biopsy and another blood test to confirm my status. Well, it didn't happen on Wednesday, it happened today, Friday. For those of you who have never had a bone marrow biopsy, it is an interesting experience. In simple terms it is like someone putting a corkscrew in your hip and then taking a horse syringe and drawing out bone marrow. Gross enough for everyone? On the blood test side, my hemoglobin has gone up to 12.3 from 11.7, my WBC has remained the same. So what this means is that we will NOT start Prednisone to carry me over until treatment begins. Speaking of treatment, it looks like as soon as all the administrative insurance issues are resolved, I will begin treatment next week. We decided to once again try the Rituxan + HDMP since I had a 14 month response to that treatment. If you forget what that is all about, there is a link on the right hand side of the web page that explains it in more detail. It will be 3 or 4 weekly cycles given 4 weeks apart. We also decided to follow that treatment up with another drug to try to get an even longer remission. All of that will be decided at the end of the R + HDMP treatment. End of short report.
Actually I feel better than I did earlier in the week mainly because I won't be on prednisone, I now have a plan, and I even have a post plan. The bone marrow biopsy is not a big deal for me. I know some people who have one and swear they will never have another. I have had 3 and they have all been pretty uneventful. This time was slightly different because Dr. Kipps himself had to do the biopsy because his PA was on vacation. She had done my last two with no problems. I kidded him that I hoped he remembered how to do one, but it came off without a hitch. Even though Donna is a nurse, they requested that she remain outside during the procedure because the in the last 4 procedures the relative watching had passed out. Dr. Kipps decided he wanted to discuss things with me in the room, so he brought her in where she stayed. She was fine but did say it is easier being the patient and not being able to see the procedure than having to watch. I won't get the results of the biopsy for a couple of weeks, and it will be used to check for any genetic changes and to use as a baseline before treatment.
I was happy that my hemoglobin counts came back on a slight upward swing. If they had not, he would have started me on prednisone to keep my counts in check until the treatment started. Dr. Kipps is reluctant to use prednisone unless he absolutely has to. The long term negative effects are just too great. (I know this first hand because of my steroid induced cataracts). However, because The Coombs test was positive, we know that my AIHA is back and we have to treat it. Because I had such a positive response to the Rituxan + HDMP before, we decided that this was the best option for me this time as well. After this course of treatment (which will be over 3 or 4 months), we will decide if we want to add on another treatment protocol to try to get a longer remission. We talked about several options, but nothing has been decided yet as to which one. If you remember the last time I was treated in June – August of last year, the treatment is 5 days in a row, so we have to decide if you are going to stay down there or make the drive every day. The treatment itself has not been a big deal for me, although it can take 6-8 hours a day depending on what drugs they are giving me that day. I do lose my taste buds after day 2, and I feel kind of lethargic for 2-3 days after the last day of treatment. Other than that, it is not a problem for me. I am not sure which day of the week I will start, and they will call me on Monday to let me know. I will probably begin treatment on Wednesday because of insurance authorization issues, which means the first round, will end on Sunday.
Because of the bone marrow biopsy I was on limited duty for 24 hours, so Jeff had to work on installing the patio pavers mostly by himself. Unfortunately I will be cleared for duty tomorrow, so I will get to help out. I hope we get it done this weekend, because I will be out of commission next weekend. I know that with my family, friends and faith, I will get through this and be on the upswing once again.
Terry
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