Karen's High Dose Chemo Diary
Our Duke University Trip
To: "wellness" <
Subject: Our Duke University trip
From: "Harry Patterson" <
Date: Tue, 5 Jan 1999 21:33:15 -0500
We just got back in at 7:00 (Monday) from our trip to Duke University to discuss High Dose Chemo treatments for Karen. We were welcomed back to the island with no power and no phones for several hours (why not).
We have an awful lot to digest after meeting with the people at Duke. The short answer is Karen is now probably going to go through with the treatment and probably starting in the next two weeks. We went in to the meetings with the "you better have a compelling reason for Karen to do this" attitude and they did. The reason for the change is this simple statement from the doctor "without doing anything, Karen's chances of being alive in 10 years is 3% ... with doing this treatment she can increase that to about 30%". The down side is that it obviously means no matter what, there is a 60% chance that she will not be here in 10 years ... pretty sobering. The death rate for the treatment (caused by major organ failure (heart, liver, lungs)) is now down to about 2% (probably about the same as any operation) and the doctor thinks the risks are worth the almost 30% range improvement. We have sort of concluded he is right. No easy decision, but today (Tuesday) we said yes.
On the up side the original doctor we were going to meet was unavailable (no slight intended) and we wound up meeting with and will have primary treatment by the Director of the Bone Marrow Transplant Program Dr. Nelson J. Chao. We figure with Duke being rated at or close to #1 in the world and the Director of the program being her doctor, we can't get much better attention. The facilities were modern and not too sterile. It was slow paced and we met for 4 hours (virtually no waiting) with a Staff Social Worker, Dr. Chao and his Clinical Research Nurse.
Karen will have multiple tests this week .. A Bone Scan, Cat Scan, Heart MUGA (test pumping ability), Bone Marrow Aspirate (take a small core of Bone Marrow from her hip) and other tests. In two weeks she will start Neupogen to increase her blood count and in three days after that go back to Duke (six hours by the way) and have the Hickman Catheter (like a Porta cathe she has in now for treatments) put in and start her "pheresis" or taking of the "Stem Cells". She will then go home for a few days to allow the Neupogen to wear off so blood counts are normal, then go back up for the High Dose treatment of about 1 week. This is probably when I will stay with her (aside from the 1-3 day pheresis) which is the highest chance of severe problems.
We will be getting help from my parents to watch our 14 year old son, Drew while I'm away. After the chemo treatment Karen will move to a local Hampton Inn, which is specially equipped for this treatment, where she will spend the next 2-3 weeks rebuilding her blood counts (and bone marrow). Her sister Lynn will come down to stay with her then, it's required to have a primary caregiver with her at all times like a sister, husband, etc. and I can't take that much time off. She will then come home where they say it will take a minimum of 1 more month of recovery and up to 3 months before she can go back to work. That could be 6 months out of work, although they say it's possible for some people to go back on a limited basis after 3.
Quite a process isn't it?
The main factors for considering this are the 3/30% survivor rate and that this is her only window of opportunity for the test. She will probably not be eligible for it again if not taken now due to an increased resistance to chemo treatments over time. More negative in nature than positive, but pretty compelling none the less.
Karen is doing real well emotionally. The doctors and the hospital have been great and responded immediately to an e-mail I sent asking about some questionable results from the Holland and Texas studies released this year.
We are considering posting her progress as she goes through this process. It might help others to hear first hand what happens and how it happens. I'm sure there will be lapses in our discussion, but will keep you all up to date. In the mean time please post to the list about other issues as well. We have had a lot of women asking us questions concerning menopause, exercise, herbal medicines, the power of positive thinking etc. We can only help each other if you post to the list and others can respond. If you know of others that might contribute (especially doctors, nurses, etc) or would enjoy or benefit from this list please ask them to join.
Harry and Karen Patterson