Adrienne saw her new adult oncologist as well as her pediatric doctor yesterday at City of Hope and started the valproic acid. She will take it three times a day and there will probably be several dose adjustments over the next few weeks. Most people tolerate it well and we hope she does too. Some people have electrolyte problems on it so she is drinking her EmergenC just like when she was training for marathons. The drug takes time to work, unlike chemo. She will have a CT scan in a month to see if there is any response, though that might be too early to tell. If her disease remains stable, we'll be happy with that.
Otherwise, things are going well. Adrienne is working at the Kravis Leadership Institute this week and classes start next Tuesday. Her schedule is set but she's hoping to get into an evening seminar course that was full but she's high on the waiting list.
Some very exciting news: Adrienne has an internship this summer at a NY investment company. This is an amazing opportunity and we are all very happy for her. We still need to figure out housing for her in the city but we have several leads and are sure it will all work out.
Friday, January 12, 2007
Saturday, January 06, 2007
Back Home
We got home yesterday after having just a few hours sleep. Both Adrienne and I were very tired, not leaving the couch. But today we're pretty much back to normal, busy getting Adrienne ready to drive back to Claremont tomorrow. Boy this vacation went fast.
We had a really good time in New York, saw a show, ate some nice meals, and did some shopping (mostly for Adrienne). The prices were higher than I expected even with the markdowns but Adrienne got some nice new clothes. We did a lot of walking, which we both enjoyed, and took a tour of United Nations. It was fascinating and we learned a lot about how they work.
We're very excited about what we learned from the doctor and the possibilities ahead, but in the meantime, there are a number of hoops for Adrienne to go through. On Thursday, she goes to City of Hope to see a new doctor and start the valporic acid. They decided she didn't need another scan and that's fine with us. She'll have plenty of scans in the coming months to assess the progress of this drug or any others she takes. If this one doesn't work, we'll try another.
Adrienne is currently planning to spend the summer in New York to do a clinical trial. We need to find her a place to live and an internship but that doesn't seem insurmountable. She is getting her resume ready and I'm going to write to every CEO and foundation I can think of in New York to see where they might be able to help. Sounds like fundraising for LLS and I know we did well at that.
Adrienne is feeling well except for a bit of lightheadedness. Her blood pressure is still quite low from the Coreg but hopefully it will normalize a bit in the coming weeks.
We had a really good time in New York, saw a show, ate some nice meals, and did some shopping (mostly for Adrienne). The prices were higher than I expected even with the markdowns but Adrienne got some nice new clothes. We did a lot of walking, which we both enjoyed, and took a tour of United Nations. It was fascinating and we learned a lot about how they work.
We're very excited about what we learned from the doctor and the possibilities ahead, but in the meantime, there are a number of hoops for Adrienne to go through. On Thursday, she goes to City of Hope to see a new doctor and start the valporic acid. They decided she didn't need another scan and that's fine with us. She'll have plenty of scans in the coming months to assess the progress of this drug or any others she takes. If this one doesn't work, we'll try another.
Adrienne is currently planning to spend the summer in New York to do a clinical trial. We need to find her a place to live and an internship but that doesn't seem insurmountable. She is getting her resume ready and I'm going to write to every CEO and foundation I can think of in New York to see where they might be able to help. Sounds like fundraising for LLS and I know we did well at that.
Adrienne is feeling well except for a bit of lightheadedness. Her blood pressure is still quite low from the Coreg but hopefully it will normalize a bit in the coming weeks.
Tuesday, January 02, 2007
New York, New Plan
I tried to think of a great headline for this post but I'm not that creative. Leave it to say that we left Memorial Sloan Kettering feeling very excited and hopeful. No, we left Dr. O'Connor excited and hopeful. Not only does he have options, he has ideas for a cure for Adrienne, maybe not today, but not that far in the future. He thinks that the oldest protocol out there for Hodgkin's Disease, called MOPP, could offer her a cure. (This protocol isn't used today because of the long term effects but Adrienne has most of them so that isn't really a concern for us.) In the meantime, there are a number of FDA approved drugs and drugs in clinical trial that can keep her disease under control and maybe offer a cure.
We learned some new and interesting things. First, there are quite a few people out there living with Hodgkin's Disease for many years like Adrienne. Dr.O'Connor has 10 patients himself. The disease often becomes more indolent (slower growing) after many different treatments, as Adrienne's has. Finally, there are a number of new drugs that are on the very near horizon.
Currently, the plan is to do a repeat PET scan to see how quickly her disease is growing. Next, start a drug called valporic acid (FDA approved and readily available) at City of Hope. After that, there are two other drugs in clinical trial that Adrienne could start in May, after she finishes the spring semester at college. We can look at MOPP in the future, ideally after Adrienne graduates from college.
So, we have a plan and we feel very hopeful about the future. Adrienne is enjoying her vacation and is looking forward to getting back to Claremont to start her next phase of treatment. Her future is very bright.
We learned some new and interesting things. First, there are quite a few people out there living with Hodgkin's Disease for many years like Adrienne. Dr.O'Connor has 10 patients himself. The disease often becomes more indolent (slower growing) after many different treatments, as Adrienne's has. Finally, there are a number of new drugs that are on the very near horizon.
Currently, the plan is to do a repeat PET scan to see how quickly her disease is growing. Next, start a drug called valporic acid (FDA approved and readily available) at City of Hope. After that, there are two other drugs in clinical trial that Adrienne could start in May, after she finishes the spring semester at college. We can look at MOPP in the future, ideally after Adrienne graduates from college.
So, we have a plan and we feel very hopeful about the future. Adrienne is enjoying her vacation and is looking forward to getting back to Claremont to start her next phase of treatment. Her future is very bright.
Tuesday, December 26, 2006
Holding Tight
Last Friday, finally, MSK received most of Adrienne's records so they confirmed her appointment for January 2. I'm still waiting for a CD of the last CT scan plus MSK is still waiting for Adrienne's chemo records from Stanford, but they have enough to move ahead. We've been through this before with Adrienne's treatment in Seattle and the move to City of Hope and it's always a big hassle. Adrienne and I have been talking about possible treatments and she's been deciding what she's willing to do. The big priority now is to keep her in school while controlling her disease.
We had a nice but quiet Christmas and Chanukah. We're still working on the house so we decided to forego presents. I've been buying Adrienne some things she needs, like a new cell phone and boots, and we'll do a bit of shopping in New York at the after Christmas sales.
Today, Adrienne is off to see her dad, aunt and uncle, and cousin in southern California. The last time she saw her cousin, he was 5 and it was right after her second transplant. She had very little hair and was on high dose prednisone. She wants to see everyone since she is looking like herself and very healthy.
We had a nice but quiet Christmas and Chanukah. We're still working on the house so we decided to forego presents. I've been buying Adrienne some things she needs, like a new cell phone and boots, and we'll do a bit of shopping in New York at the after Christmas sales.
Today, Adrienne is off to see her dad, aunt and uncle, and cousin in southern California. The last time she saw her cousin, he was 5 and it was right after her second transplant. She had very little hair and was on high dose prednisone. She wants to see everyone since she is looking like herself and very healthy.
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