I spent some quality time with TGL yesterday. He has finished the chemo and is laying low, both mentally and physically. We should have knocked on wood when we bragged about how he never got nauseous or threw up with the first round of chemo. Such is not the case with round II.
Things all started with a bang last Tuesday when he fainted in the bathroom at 2am and woke up with his "chemo caddy" on top of him. He had cuts and bruises that we are still finding as we massage him each day. Of course he was a trooper and didn't want to bother the nurses - you know because that isn't their job or anything.
Then Sunday morning he fainted again and was very nauseous. When I got to the hospital he had a STAR on his door - I thought it meant he had been awarded "best AML patient of the year" but he informed me it meant he was on "faint alert". Anytime he wanted/needed to go to the bathroom he had to call the nurse. Poor guy threw up twice, once while I was there. He came out of the bathroom and said to Dave and I "well that was fairly embarrassing". He called the nurse for cleanup on aisle Lewis and apologized profusely for the mess. Such a sweet and undemanding soul.
The family, as usual, is amazing in every way as each person, Sara while here, does all they can to help him. I'm not sure how I got such great siblings but I'll ride on their shirt tails any day. Rand has spent hundreds of dollars on equipment in order to somehow get HD access via laptop so that dad can watch the golf channel while there. Mom goes down each day and then Carrie comes and hands Brig off [no kids under 5 are allowed]. Mom walks with Brig around the relatively seedy neighborhood while Carrie goes up to be with Dad. Sara did the same with OZ when she was here and calls each day.
We all think of him constantly and feel your love.
Monday, June 29, 2009
Saturday, June 27, 2009
June 18th email to family from TGL
Family:
Today we met with Dr. Busby and reviewed the results of last week's bone marrow biopsy. The diagnosis is that the leukemia (AML) has returned. We spent most of the time discussing various options to proceed. The summary is as follows:
1. Do nothing. Could basically provide support via antibiotics and blood transfusions transitioning to hospice. Time to conclusion probably measured in weeks.
2. Try to put the AML back into remission and if successful, do an allogenic bone marrow transplant. There are about four drugs to use but we are opting for a new drug which is in a trial at Rocky Mtn Cancer Centers in Denver. The drug is Voreloxin combined with Cytarabine. It has shown ability to achieve remission in 30-40% of cases. If successful, then an allogenic bone marrow transplant may be an option. Without the transplant, the AML would likely return in a matter of months. Since this drug is part of a trial, it can only be administered at Presbyterian St. Luke's hospital in Denver.
Current plan is to enter the hospital on Monday. This lets me play golf on Friday! Dr. Busby has not used this drug but says that he thinks that I would be in the hospital for 7 to 10 days while the drug is administered and then be outpatient during a recovery that would be more like the earlier consolidation experience rather than induction (which was 38 days in the hospital).
Not to overwhelm you with numbers but if complete remission is achieved, then the five year survival rate following an allogenic BMT is in the 40-50% range.
I am beginning to be more public with the situation so there is no particular need to keep this information within our little clan.
I'm sure that you have further questions, as do I, but there won't be any more answers until next week. Kathleen is doing her best but I think that the "do nothing" scenario from above really hit her hard today so she can use your support.
Dad (Gordon)
Today we met with Dr. Busby and reviewed the results of last week's bone marrow biopsy. The diagnosis is that the leukemia (AML) has returned. We spent most of the time discussing various options to proceed. The summary is as follows:
1. Do nothing. Could basically provide support via antibiotics and blood transfusions transitioning to hospice. Time to conclusion probably measured in weeks.
2. Try to put the AML back into remission and if successful, do an allogenic bone marrow transplant. There are about four drugs to use but we are opting for a new drug which is in a trial at Rocky Mtn Cancer Centers in Denver. The drug is Voreloxin combined with Cytarabine. It has shown ability to achieve remission in 30-40% of cases. If successful, then an allogenic bone marrow transplant may be an option. Without the transplant, the AML would likely return in a matter of months. Since this drug is part of a trial, it can only be administered at Presbyterian St. Luke's hospital in Denver.
Current plan is to enter the hospital on Monday. This lets me play golf on Friday! Dr. Busby has not used this drug but says that he thinks that I would be in the hospital for 7 to 10 days while the drug is administered and then be outpatient during a recovery that would be more like the earlier consolidation experience rather than induction (which was 38 days in the hospital).
Not to overwhelm you with numbers but if complete remission is achieved, then the five year survival rate following an allogenic BMT is in the 40-50% range.
I am beginning to be more public with the situation so there is no particular need to keep this information within our little clan.
I'm sure that you have further questions, as do I, but there won't be any more answers until next week. Kathleen is doing her best but I think that the "do nothing" scenario from above really hit her hard today so she can use your support.
Dad (Gordon)
It's back.
My dad goes in for blood tests every three months to check for indicators for the return of his leukemia, and each time he does, the entire family holds our breath. About a month ago, on his standard test, his white counts were low. They immediately did a bone marrow biopsy, which was negative for leukemia. Weekly blood tests followed, and the white counts continued to drop. Another bone marrow test was performed about 2 weeks ago, the result showing 30% of his marrow being affected with AML. The doctor told my mom and dad about a new drug that's been getting better results, in trial at a hospital in Denver. He gave my dad the option to start treatment (chemo) on Friday June 19th or Monday June 22, and he opted for Monday.
I got the news on Thursday night and was able to book at flight from NY for my 2 year old and I, and we flew in Friday morning just in time to celebrate Carrie's birthday. We had a great weekend all together, despite the impending admittance to the hospital.
He entered the hospital at 1 PM on Monday, and the chemo began Wednesday morning at 9 AM. So far his only symptom has been fatigue, but experience tells us that he will soon have a fever and nausea. We anticipate another marrow draw on day 14 that will hopefully show no leukemia in his marrow. In the meantime, he will get a lot worse before he gets better.
I got the news on Thursday night and was able to book at flight from NY for my 2 year old and I, and we flew in Friday morning just in time to celebrate Carrie's birthday. We had a great weekend all together, despite the impending admittance to the hospital.
He entered the hospital at 1 PM on Monday, and the chemo began Wednesday morning at 9 AM. So far his only symptom has been fatigue, but experience tells us that he will soon have a fever and nausea. We anticipate another marrow draw on day 14 that will hopefully show no leukemia in his marrow. In the meantime, he will get a lot worse before he gets better.
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