It has been another week in what is a repeating two week cycle. Since the blood transfusion last week, my hemoglobin is back to 9.3. It probably was up to about 10.5 after the transfusion and by next Wednesday will be back down to around 8.5 again. Platelets and white cell counts were exactly the same even though I reduced my Anagrelide over the past week. Factor 2 was 16, almost half of the 31 last week, but within range of target 15-25 range. I didn't eat any spinach and fewer greens this week. It is a boring report but good that it is repeatable. Not much, but the frequency of my transfusions has changed in the last year. Then, I was on my third one with about 5 weeks between them.
On the iron storage measure, my ferritin level is 2272 where normal range is 12 to 300 for men and 12 to 150 for women. My doctor is still not concerned and my ferritin has actually gone down some since May. Marilyn's ferritin level is 7 and is getting an iron infusion tomorrow.
I just got back from visiting my mother at the nursing home. She will probably get to return to my sister Lola's house next Tuesday. Once she heard that she could get out if she could get around with a walker, she started moving. Just needed some incentive. Bad news is that she will need a catheter and bag for her urine for the rest of her life. I was also there on Tuesday when we attended an organ concert and sing along. She seemed to enjoy that as much as I did.
I was up at 3am this morning and drove Anna and Andrew to the airport. They traveled with two cats and are safely at Anna's new appartment in Cambridge, MA this evening. Tommorow, they tour MIT and Saturday recover Anna's shipped boxes from Amtrac. Sometime in there they are looking to buy some used furniture since all of Anna's is still back here in our garage. They will rent a ZIP car minivan in order to move this stuff. Andrew will be back home to start his senior year in high school on Tuesday. Anna will be starting her second year of graduate study at Harvard Divinity School.
Thursday, August 31, 2006
Thursday, August 24, 2006
BMT Possibilities
Well, I had another blood transfusion this week (Wed) as expected. My hemoglobin was 8.8 on Tuesday when I went in a day early since I wanted to get the transfusion as soon as possible. I was dragging over the weekend though I made it to my mother's 89th birthday party at the nursing home on Sunday night. My platelets were up to 573 and my Factor 2 was up to 31. I missed a day of medication on Saturday and had a big spinach salad at the birthday party. This most likely is related to the rise. Spinach is high in Vitamin K which counteracts the Coumadin.
I also met with my doctor on Wed along with Marilyn and Anna. We discussed what is next and were discouraged from putting much hope in a BMT. Dr still wants to try other treatments first, initially trying a combination of anagrelide and hydrea. I have reduced my anagrelide to one pill per day, rather than taking alternating between 1 and 2 pills each day. This what we tried in early June when I went for 5 days before platelets hit an all time high. My expectation is that this will not help, but Dr will add some hydrea to compensate. I don't expect frequency of transfusions to change though I did go for 28 days at that time. It seems like medicine reduces both platelets and hgb.
The Dr did talk more about the possibility of a mini-BMT. In essence, they would use less chemotherapy and radiation so all of the old bone marrow would not be destroyed. The new donor stem cells would then battle the old bone marrow for dominance and hopefully take over. In this case, some studies indicate that it would be better to have a MUD (matched, but unrelated donor) than my brother donate the stem cells. The following Only Real Cure article (which I referenced before) describes this very well. It also indicates that my chances of survival could be between 30 and 60% after two years depending on how many penalty points I rate. I have not found any similar statistics for people receiving blood transfusions or the medicines that I am on. I will also need to add something like Exjade to counter the buildup of iron from the transfusions.
This may not seem very encouraging, but I am thankful for each day that I have. I have survived at least 5 blood clots in my lungs where the chance of death were about 20 percent for each one. By all rights, I am living on borrowed time, by the grace of God. Think about it for a new perspective on life each day.
I also met with my doctor on Wed along with Marilyn and Anna. We discussed what is next and were discouraged from putting much hope in a BMT. Dr still wants to try other treatments first, initially trying a combination of anagrelide and hydrea. I have reduced my anagrelide to one pill per day, rather than taking alternating between 1 and 2 pills each day. This what we tried in early June when I went for 5 days before platelets hit an all time high. My expectation is that this will not help, but Dr will add some hydrea to compensate. I don't expect frequency of transfusions to change though I did go for 28 days at that time. It seems like medicine reduces both platelets and hgb.
The Dr did talk more about the possibility of a mini-BMT. In essence, they would use less chemotherapy and radiation so all of the old bone marrow would not be destroyed. The new donor stem cells would then battle the old bone marrow for dominance and hopefully take over. In this case, some studies indicate that it would be better to have a MUD (matched, but unrelated donor) than my brother donate the stem cells. The following Only Real Cure article (which I referenced before) describes this very well. It also indicates that my chances of survival could be between 30 and 60% after two years depending on how many penalty points I rate. I have not found any similar statistics for people receiving blood transfusions or the medicines that I am on. I will also need to add something like Exjade to counter the buildup of iron from the transfusions.
This may not seem very encouraging, but I am thankful for each day that I have. I have survived at least 5 blood clots in my lungs where the chance of death were about 20 percent for each one. By all rights, I am living on borrowed time, by the grace of God. Think about it for a new perspective on life each day.
Friday, August 18, 2006
Weekly update
Well, I had my blood tested on Wed with expected results. Hemoglobin is 9.5 with other components essentially unchanged. After the blood transfusion last week, it has probably dropped a point and will drop more by next week. I expect to see about 8.5 next Wed and get another blood transfusion. I also worked a full 40 hours this week, though had to come home for a quick nap this morning and take another when I got home this evening. I was also very itchy when I went to bed last night and woke up several times this last week with terrible leg pains. I have had a recurrence of canker sores and also frequent pimple-like sores that linger for weeks. These symptoms are typical of MPDs.
I also have an appointment with my hematologist on Wed and hopefully will get some direction on where we go from here. Not sure how much longer I can keep up these transfusions before I get iron overload or some other complication. (Interestingly, Marilyn is low on iron and will get extra through IV on Sept 1.) Maybe it is time to get on with the BMT. Certainly there will be a barrage of tests to check my health and the condition of my bone marrow.
I also have an appointment with my hematologist on Wed and hopefully will get some direction on where we go from here. Not sure how much longer I can keep up these transfusions before I get iron overload or some other complication. (Interestingly, Marilyn is low on iron and will get extra through IV on Sept 1.) Maybe it is time to get on with the BMT. Certainly there will be a barrage of tests to check my health and the condition of my bone marrow.
Friday, August 11, 2006
Another transfusion
As expected, I needed another blood transfusion this week. After getting back from the lake on Monday and feeling drug out, I went for a blood test on Tuesday, a day early. My Hgb was at 8.5 so I was back in on Wed for 2 units of "red blood cells, leuko reduced and irradiated", the typical fare. My white cells and platelets were essentially unchanged in the normal ranges.
If the previous paragraph sounds familiar, it is. Identical to two weeks ago though I was not tired on Thursday and logged a full 40 hrs (including 8 hrs vacation) for the week. As before, it does not appear that the Rituxan is working, but have another 2 weeks before discussing a possible BMT with my doctor.
Like two weeks ago, I am also working more on the cars. Replaced the battery in the van last night and plan to replace rear struts on the Malibu tomorrow. I did replace the front struts two weekends ago and will get a full 4-wheel alignment after this.
I visited my mother at the nursing home on Wed and again tonight. She still has a bladder infection, but is progressing with physical therapy. My sister and I played Scrabble with her, but she beat us after 5 rounds.
If the previous paragraph sounds familiar, it is. Identical to two weeks ago though I was not tired on Thursday and logged a full 40 hrs (including 8 hrs vacation) for the week. As before, it does not appear that the Rituxan is working, but have another 2 weeks before discussing a possible BMT with my doctor.
Like two weeks ago, I am also working more on the cars. Replaced the battery in the van last night and plan to replace rear struts on the Malibu tomorrow. I did replace the front struts two weekends ago and will get a full 4-wheel alignment after this.
I visited my mother at the nursing home on Wed and again tonight. She still has a bladder infection, but is progressing with physical therapy. My sister and I played Scrabble with her, but she beat us after 5 rounds.
Thursday, August 03, 2006
Cycle Continues
Not much to write today, except for status on blood counts. Hgb is back down to 9.3 again, same as it was two weeks ago. After the blood transfusion, it probably went up to about 10.3 and then dropped a point during the week. A very typical cycle. I could have scheduled a blood transfusion for Friday, but planned to go to the lake cabin again, so that's what I am doing. When I get back on Monday, I will have my blood cross matched for a transfusion, probably on Wednesday.
My other blood factors remain about the same in normal ranges and prescriptions are same as well. Seems like just another week closer to a decision on a bone marrow transplant. Not sure how long I can keep up this cycle of transfusions, but while I do, the risks of a BMT increase.
My other blood factors remain about the same in normal ranges and prescriptions are same as well. Seems like just another week closer to a decision on a bone marrow transplant. Not sure how long I can keep up this cycle of transfusions, but while I do, the risks of a BMT increase.
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