Adrienne is back at CMC, not feeling great, but getting through each day. She's caught up in her work and her thesis is going well right now, so she seems happy, except for some low blood pressure. Ugh!
I spent an hour on the phone today with the cardiologist in Miami. It turns out he's a 3x Hodgkin's survivor, which explains his special interest in heart problems related to treatment in children. He was particularly interested in Adrienne and expressed his concern for her and us, so nice. The long and short of it is...he doesn't think she has the heart problem that she's been diagnosed with. That's not to say she doesn't have a heart problem, just a different one that explains her low BP, fast heart rate, shortness of breath, and overall fatigue. It also explains why she's been feeling worse on the meds than off. Short term, he recommended some blood tests prior to each treatment to see if there's any heart damage, and long term, we'll make a trip to Miami for a complete workup. Adrienne says that as long as she gets some vacation time, it's fine with her.
Just before talking with the cardiologist, Dr. O'Connor called (have I mentioned that I love him?). The plan now is for Adrienne to stop treatment, have a scan in about a month, and then start Belinostat after graduation. That gives us two weeks to get the trial started before she begins graduate school. Yes, you heard right. She starts classes at UNLV on June 1 toward her masters in education. She's planning to teach high school math, get great benefits, and have time off for treatment, after about 2.5 years of studying since she needs more math than she has, but she likes math and is good at it, so it shouldn't be too bad.
We've all been sad about Prince's death, as you can imagine. Thank you for all the emails, comments, and PMs. The other dogs are doing fine. Caesar was upset (sitting on my lap) while Prince was sick but seems back to himself now. Moe is, well, just a puppy, wanting to play at every opportunity. We just can't wait for adult teeth.
Wednesday, March 25, 2009
Saturday, March 21, 2009
For Prince
Yesterday was a tough day for all of us. Adrienne had her second chemo so our friend Naomi came over to stay with the dogs as Prince was quickly deteriorating. By the time we got home, he was unable to stand at all and just wanted to lay on the grass. We spent a few hours with him after Curt came home and made the decision to take him to the vet at 6:00 pm and he was put to sleep with all of us there. We thought it would be scary but it wasn't at all. He just seemed so peaceful.
We got Prince in 1996, just a few months before Adrienne's diagnosis. Everyone agreed that they wanted a sheltie but it took awhile to find a breeder. Eventually, I found one in Merced, about a two hour drive from our house. The puppies were 10 and 11 weeks old but Adrienne and Daniel had already decided that they wanted an 8 week old one because anything else would be too big. They sat in the back seat, not saying a word for the entire 2 hour trip. When we pulled up to the house, you could hear dogs barking and we worked our way to the backyard, still with Adrienne and Daniel not saying a word. But that all changed when they saw the pups. I asked Adrienne which one she wanted and she said, "I don't care, I'll take any one." After "meeting" them all, we decided on Prince. He had a beautiful sable color and was quiet, the smallest of the lot. Adrienne and Daniel fought over who would hold him on the way home, so I decided I would hold him...and he threw up on me over and over again. I think it took us 3 hours to get home between clean up stops. He always hated the car until the day he died.
Prince loved the frisbee and walks more than life itself. He'd run after the frisbee over and over again until he couldn't run any more, and he had to be at the front of the pack for a walk. He also hated football games because everyone was screaming and yelling, so he'd usually be on my lap the entire time. He was a great friend and companion to all of us, and loved everyone who came to visit. We're going to miss him terribly.
We got Prince in 1996, just a few months before Adrienne's diagnosis. Everyone agreed that they wanted a sheltie but it took awhile to find a breeder. Eventually, I found one in Merced, about a two hour drive from our house. The puppies were 10 and 11 weeks old but Adrienne and Daniel had already decided that they wanted an 8 week old one because anything else would be too big. They sat in the back seat, not saying a word for the entire 2 hour trip. When we pulled up to the house, you could hear dogs barking and we worked our way to the backyard, still with Adrienne and Daniel not saying a word. But that all changed when they saw the pups. I asked Adrienne which one she wanted and she said, "I don't care, I'll take any one." After "meeting" them all, we decided on Prince. He had a beautiful sable color and was quiet, the smallest of the lot. Adrienne and Daniel fought over who would hold him on the way home, so I decided I would hold him...and he threw up on me over and over again. I think it took us 3 hours to get home between clean up stops. He always hated the car until the day he died.
Prince loved the frisbee and walks more than life itself. He'd run after the frisbee over and over again until he couldn't run any more, and he had to be at the front of the pack for a walk. He also hated football games because everyone was screaming and yelling, so he'd usually be on my lap the entire time. He was a great friend and companion to all of us, and loved everyone who came to visit. We're going to miss him terribly.
Thursday, March 19, 2009
Got Chemo
Adrienne has been feeling good so we asked about getting chemo today while she's home for spring break. At first, the doctor wanted to wait another week and then decided it would be okay if Adrienne was doing well enough, which she was. She had a chest xray, which still shows some infiltrate, but it takes awhile for that to clear. She's feeling well so we wanted to take the opportunity. Not much of a spring break, but we need to look at the long term.
I sent an email to a cardiologist in Miami who is the guru of Adrienne's type of cardiomyopathy. He's written or coauthored virtually every study on the subject. He offered to spend an hour on the phone with me discussing her situation. Wow, isn't that great? That will happen next Wednesday so stay tuned.
Prince is not doing well at all. He doesn't seem to be in pain but is very uncomfortable as his body is filling with fluid and he's having trouble getting around. He stopped eating last week and the vet put him on prednisone to stimulate his appetite, but now I think it's prolonging his suffering so I stopped it yesterday. He still wags his tail for us so we're just taking it a day at a time. Curt is out of town but will be home tomorrow, thank goodness. Curt and Prince are definitely buds so he wants to be here, and I definitely don't feel up to it on my own.
I sent an email to a cardiologist in Miami who is the guru of Adrienne's type of cardiomyopathy. He's written or coauthored virtually every study on the subject. He offered to spend an hour on the phone with me discussing her situation. Wow, isn't that great? That will happen next Wednesday so stay tuned.
Prince is not doing well at all. He doesn't seem to be in pain but is very uncomfortable as his body is filling with fluid and he's having trouble getting around. He stopped eating last week and the vet put him on prednisone to stimulate his appetite, but now I think it's prolonging his suffering so I stopped it yesterday. He still wags his tail for us so we're just taking it a day at a time. Curt is out of town but will be home tomorrow, thank goodness. Curt and Prince are definitely buds so he wants to be here, and I definitely don't feel up to it on my own.
Sunday, March 15, 2009
Cardiomyopathy
I thought it might be helpful to explain about Adrienne's cardiomyopathy. She was officially diagnosed in 2004 at her one year post transplant checkup. Her echocardiograms in the prior year had shown some abnormalities, but these were attributed to her treatments at the time. It turns out that the problem was caused by the combination of adriamycin and radiation she received when she was 9. Had she been cured and not had regular echos, we might not known of the problem until 10-20 years later.
Adrienne has what's called dilated cardiomyopathy. If you google it, you'll read about an enlarged heart, which she doesn't have. What she does have is a left ventricular dysfunction, which is characteristic of this type of damage from adriamycin. She received a very low dose of the drug, less than half what is considered the maximum allowable dose. But in young girls who receive concurrent mediastinal radiation, the effect can be compounded. Her treatment essentially permanently damaged the heart cells, which then die off over time. As they die, her cardiac function worsens.
Adrienne saw a pediatric cardiologist at LPCH for almost two years, and there was a slow worsening of her cardiac function over that time, but we all agreed to watch and wait, without treatment. At her last visit in late 2005, she had a big drop in her function and still the doctor didn't want to treat so we decided to make a change. She was at college by this time so we consulted with a cardiologist at City of Hope, Dr. Ven, who has much more experience with this type of problem. He ran a much more extensive battery of tests than were done at LPCH and immediately started her on a drug called Vasotec. This is the standard of care for people with Adrienne's problem and her cardiac function improved immediately. A few months later, he started her on a drug called Coreg. Both of these drugs take the load off the heart and also lower the blood pressure. For most people, this is a good thing but Adrienne has always had low to normal blood pressure so it was tough for her. It took awhile but she adjusted and her echos were normal, so we were happy.
Fast forward to last year while Adrienne was on the MGCD trial. She started having a lot of trouble with low blood pressure so, bit by bit, she took less of the Coreg and eventually stopped it. Then she started the Bendamustine and her blood pressure has been even lower making her short of breath, weak, and almost blacking out when standing. After being admitted this week, her pressures were extremely low (80/50) so the Vasotec was stopped.
Adrienne saw Dr. Ven on Thursday and he ran all the usual tests (echo, EKG, blood work) and things look good right now. The problem is that, being off the meds for awhile, she can go into congestive heart failure, which sounds worse than it is. It doesn't mean her heart will stop working but that it won't work well enough for her needs. They can reverse it with medication and she can always restart the Vasotec and Coreg, or even an older drug called Digoxin. However, that would also mean she couldn't receive any treatment for her Hodgkin's that lowers her BP. You can see the conundrum. It seems like we can only treat one problem at a time.
When we first found out about the cardiomyopathy, we were shocked and upset, of course. The literature on this subject is pretty depressing and the only treatment at that time was a heart transplant. Since 2004, though, a number of new medications have come on the market and there are several others in development. Stem cell research in this area also seems very promising We've felt pretty secure that her cardiac issues could be managed with medication and not something more drastic. So now we get to watch and wait again and hope for the best. As I said in yesterday's post, Adrienne is feeling well and we'll just keep our fingers and toes crossed that this continues, and that we can keep the Hodgkin's under control.
Adrienne has what's called dilated cardiomyopathy. If you google it, you'll read about an enlarged heart, which she doesn't have. What she does have is a left ventricular dysfunction, which is characteristic of this type of damage from adriamycin. She received a very low dose of the drug, less than half what is considered the maximum allowable dose. But in young girls who receive concurrent mediastinal radiation, the effect can be compounded. Her treatment essentially permanently damaged the heart cells, which then die off over time. As they die, her cardiac function worsens.
Adrienne saw a pediatric cardiologist at LPCH for almost two years, and there was a slow worsening of her cardiac function over that time, but we all agreed to watch and wait, without treatment. At her last visit in late 2005, she had a big drop in her function and still the doctor didn't want to treat so we decided to make a change. She was at college by this time so we consulted with a cardiologist at City of Hope, Dr. Ven, who has much more experience with this type of problem. He ran a much more extensive battery of tests than were done at LPCH and immediately started her on a drug called Vasotec. This is the standard of care for people with Adrienne's problem and her cardiac function improved immediately. A few months later, he started her on a drug called Coreg. Both of these drugs take the load off the heart and also lower the blood pressure. For most people, this is a good thing but Adrienne has always had low to normal blood pressure so it was tough for her. It took awhile but she adjusted and her echos were normal, so we were happy.
Fast forward to last year while Adrienne was on the MGCD trial. She started having a lot of trouble with low blood pressure so, bit by bit, she took less of the Coreg and eventually stopped it. Then she started the Bendamustine and her blood pressure has been even lower making her short of breath, weak, and almost blacking out when standing. After being admitted this week, her pressures were extremely low (80/50) so the Vasotec was stopped.
Adrienne saw Dr. Ven on Thursday and he ran all the usual tests (echo, EKG, blood work) and things look good right now. The problem is that, being off the meds for awhile, she can go into congestive heart failure, which sounds worse than it is. It doesn't mean her heart will stop working but that it won't work well enough for her needs. They can reverse it with medication and she can always restart the Vasotec and Coreg, or even an older drug called Digoxin. However, that would also mean she couldn't receive any treatment for her Hodgkin's that lowers her BP. You can see the conundrum. It seems like we can only treat one problem at a time.
When we first found out about the cardiomyopathy, we were shocked and upset, of course. The literature on this subject is pretty depressing and the only treatment at that time was a heart transplant. Since 2004, though, a number of new medications have come on the market and there are several others in development. Stem cell research in this area also seems very promising We've felt pretty secure that her cardiac issues could be managed with medication and not something more drastic. So now we get to watch and wait again and hope for the best. As I said in yesterday's post, Adrienne is feeling well and we'll just keep our fingers and toes crossed that this continues, and that we can keep the Hodgkin's under control.
Saturday, March 14, 2009
Home now
Thanks to everyone at City of Hope for pushing the paperwork through so we could get out of there relatively early yesterday. As often as Adrienne has been in the hospital, it always amazes me how hard it is to get a bed and then to get discharged. COH has a brand new, gorgeous hospital, but they were full so she got one of the older rooms in a surgical unit. Still, it was just fine (if not a little cramped) and they looked after her really well. They're doing some rotations with student nurses so it was fun talking to them. Most were a little younger than Adrienne and, after reading her history, they were amazed. It must be hard for a young person to put themselves in her shoes, to imagine being sick for so long.
But, today Adrienne looks very healthy. She still has a cough but otherwise is feeling great. She's off the cardiac meds and now has normal blood pressure, making her feel better than ever. There's a concern that she'll go into congestive heart failure but that is reversible with medication. It's not as if your heart stops working, it's just that it doesn't work well enough to support your needs. She has a great cardiologist at City of Hope and they'll take good care of her.
We're looking forward to a relaxing weekend. It's warming up here (finally) so I'm sure we'll be outside a lot. Have a great weekend!
But, today Adrienne looks very healthy. She still has a cough but otherwise is feeling great. She's off the cardiac meds and now has normal blood pressure, making her feel better than ever. There's a concern that she'll go into congestive heart failure but that is reversible with medication. It's not as if your heart stops working, it's just that it doesn't work well enough to support your needs. She has a great cardiologist at City of Hope and they'll take good care of her.
We're looking forward to a relaxing weekend. It's warming up here (finally) so I'm sure we'll be outside a lot. Have a great weekend!
Thursday, March 12, 2009
Trying to go home...
Adrienne is feeling much, much better but trying to get discharged from City of Hope is turning out to be a bit difficult. In most hospitals, if you're fever-free for 24 hours, you can go, but not here. I think they're worried about how far we have to travel and that something might happen en route. The plan now is to switch to oral antibiotics tonight and then get discharged in the morning, assuming things continue to go well (which we're assuming). They still can't be sure what's on the chest xray (that is, now much is pneumonia and how much is tumor) so they want her to have a CT in 1-2 weeks before continuing with treatment.
The other little "fly in the ointment" is Adrienne's blood pressure, which has been very low for several months. It's been particularly low since she was admitted on Tuesday. Her cardiologist saw her today and ran a bunch of tests. It looks like the inferior vena cava running from her lower body to her heart is very narrow, causing her pressures to be low. He also can't be sure what effect the chemo is having. She had stopped one of the cardiac meds a few months ago and now has stopped the other one. We don't know what effect this will have on her cardiomyopathy so they'll be watching this closely.
Right now, we just want to go home and enjoy Adrienne's spring break. Since she won't be getting chemo, she should be feeling pretty good. Prince is starting to show more signs of his disease (not eating, having trouble jumping on the sofa) so he started prednisone and we're just hoping he has more good days than bad. Moe is also getting over his little surgery (neutering), which wasn't so little because one of his testicles was up in his belly, but he's still happily annoying the other dogs. Naomi (who looks after them) is having a ball.
The other little "fly in the ointment" is Adrienne's blood pressure, which has been very low for several months. It's been particularly low since she was admitted on Tuesday. Her cardiologist saw her today and ran a bunch of tests. It looks like the inferior vena cava running from her lower body to her heart is very narrow, causing her pressures to be low. He also can't be sure what effect the chemo is having. She had stopped one of the cardiac meds a few months ago and now has stopped the other one. We don't know what effect this will have on her cardiomyopathy so they'll be watching this closely.
Right now, we just want to go home and enjoy Adrienne's spring break. Since she won't be getting chemo, she should be feeling pretty good. Prince is starting to show more signs of his disease (not eating, having trouble jumping on the sofa) so he started prednisone and we're just hoping he has more good days than bad. Moe is also getting over his little surgery (neutering), which wasn't so little because one of his testicles was up in his belly, but he's still happily annoying the other dogs. Naomi (who looks after them) is having a ball.
Tuesday, March 10, 2009
Pneumonia??
Adrienne is in the hospital at City of Hope tonight. She's been feeling increasingly bad over the last week, with fevers and a cough now. They did a chest xray but can't tell if there's more tumor or if this is just pneumonia. Hopefully it's just pneumonia and a few days of IV antibiotics will take care of it. I'm trying to get ahold of our housesitter to look after the dogs so I can get there in the morning. Adrienne has exams and a paper due this week, but I talked to her RA, who sent a message to the Dean of Students, who will send a message to her profs so she can finish the work after spring break. Gotta love that small college.
Tuesday, March 03, 2009
Need a break
Things are quiet here now, which is a good thing. Adrienne is feeling better after a bit of a rough time following the last chemo. She comes home next week for more, but has spring break right after that so she'll have plenty of time to recuperate. Scans will be in early April. If there's more improvement, she'll do two more cycles and if they're stable, she'll stop treatment for awhile. Knowing that it's working helps a lot but this whole thing gets really old. It's hard to explain 12+ years of chemo, radiation, transplants, clinical trials, doctor's visits, scans, surgeries, and on and on. Right now, we all need a vacation.
I thought you might need a good laugh. Yes, this is Moe sleeping on the sofa.
Caesar now lets Moe get closer but he keeps a watchful eye.
Moe says "hi." And despite our best efforts, he still weighs under 4 pounds.
I thought you might need a good laugh. Yes, this is Moe sleeping on the sofa.
Caesar now lets Moe get closer but he keeps a watchful eye.
Moe says "hi." And despite our best efforts, he still weighs under 4 pounds.
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