Since the excitement of the DLI and antibiotics, it's been a quieter week medically. We went to the clinic on Thursday to learn how to deaccess Adrienne's port so I can do it at home next time. After that, we went to the dermatologist to look at a mole on Adrienne's shoulder that looks odd. The dermatologist didn't think it looked cancerous but decided to shave that mole and another one that Adrienne doesn't like for cosmetic reasons. Her skin is a bit painful but she's happy to be rid of these moles, as are we. Otherwise, she's feeling fine and working on getting her energy back from chemo.
On Saturday, Adrienne went to a party for new Claremont McKenna students that live in Northern California. She enjoyed the event and meeting other new students, as well as some current students and alumni. We've been busy shopping all week to get her dorm supplies together. Tonight we are going to a storage place that is holding a special evening (with discounts) for college freshmen. It should be fun, but hopefully not too expensive, since we received the tuition bill for Adrienne's first semester of college this week!!!
Sunday, July 31, 2005
Tuesday, July 26, 2005
DLI #1 is Done
Adrienne had her first DLI today. After she got her exam and premeds (and fell asleep), we found out that Daniel's blood culture from the lymphocyte collection grew a bacteria that is very hard to treat. It responds to only one antibiotic, called vancomycin. They ran additional cultures that were negative, but just to be safe, Adrienne has to get two days of IV antibiotics at home. In the past, she had a reaction to the drug called red man's syndrome where you basically turn all red. So, she has to get the drug over two hours rather than one. She got the first dose today at the hospital and will get it every 12 hours at home for the next two days. Otherwise, the donor lymphocyte infusion took place without incident.
Adrienne smells a bit from the DMSO they use to preserve the cells but is feeling fine otherwise. Now we just watch and wait. Assuming that she doesn't get any GVHD, the next DLI is scheduled for August 22.
Adrienne smells a bit from the DMSO they use to preserve the cells but is feeling fine otherwise. Now we just watch and wait. Assuming that she doesn't get any GVHD, the next DLI is scheduled for August 22.
Monday, July 25, 2005
MRI Results
We got the results of Adrienne's hip MRI late last week. It's taken a bit of research to figure out just what is going on. It turns out that Adrienne has osteonecrosis in her hip caused by radiation. This is very similar to avascular necrosis, caused by steroids, but it progresses at a much slower rate, thankfully. We're not sure what the next steps are but hope to learn more in the next few days. Adrienne will probably require surgery at some point but it seems that we have plenty of time to make a decision on that. If she had avascular necrosis, she would likely require surgery right away.
Adrienne gets her first DLI tomorrow. We are counting on this being an uneventful day. As I mentioned last week, they collected more cells from Daniel than needed. Each DLI has a specific dose so there will be cells left over. We're hoping we can freeze those and use the leftovers for a clinical trial using something called "cytokine-induced killer cells," which Adrienne will qualify for when she's 18.
Adrienne gets her first DLI tomorrow. We are counting on this being an uneventful day. As I mentioned last week, they collected more cells from Daniel than needed. Each DLI has a specific dose so there will be cells left over. We're hoping we can freeze those and use the leftovers for a clinical trial using something called "cytokine-induced killer cells," which Adrienne will qualify for when she's 18.
Wednesday, July 20, 2005
Last Chemo + DLI Collection
Yesterday was one of the longest days in recent memory. We had to be at the hospital for Daniel's apheresis (lymphocyte collection) at 7:30 a.m. With Krispy Kreme donuts in hand, we arrived and Daniel was "hooked up" without incident. We were surprised at the very large bore metal needle that stayed in his left arm during the entire procedure to take the blood out, making it so he couldn't move the arm for four hours. The return side had a regular IV, which was plastic, so Daniel could move that arm and hand. He actually seemed to enjoy himself watching old movies (Cheech and Chong's "Up in Smoke" and "Ferris Bueller's Day Off") while Adrienne and I hung out keeping him company. We got a call last night that they collected nearly 3x as many cells as needed so we are pretty happy. We are hoping that there are enough cells available to do another clinical trial using cytokine-induced killer cells in a few months.
After the apheresis, we came home for a few hours and ate lunch, and Adrienne went to work for a couple of hours. Then we were back to the hospital for an MRI of Adrienne's hips to assess her avascular necrosis, followed by chemo. I had understood that they would do the MRI on her shoulders and knees too, but they said that would take several hours and would have to be done during separate visits. No results on the MRI yet.
Next, Adrienne got her chemo uneventfully. It was the shortest chemo yet. She felt pretty crummy last night and isn't feeling well this morning either. Hopefully she'll feel better by dinner time like she did last time. She's very happy to be done with this chemo, at least.
Adrienne will begin receiving Daniel's lymphocytes next Tuesday, and every three to four weeks after that, assuming she doesn't develop GVHD. She will get at least one treatment while at Claremont McKenna, but we haven't worked out those details yet. She'll either have to fly home for a day or they will need to ship the cells to City of Hope. We would prefer the latter.
After the apheresis, we came home for a few hours and ate lunch, and Adrienne went to work for a couple of hours. Then we were back to the hospital for an MRI of Adrienne's hips to assess her avascular necrosis, followed by chemo. I had understood that they would do the MRI on her shoulders and knees too, but they said that would take several hours and would have to be done during separate visits. No results on the MRI yet.
Next, Adrienne got her chemo uneventfully. It was the shortest chemo yet. She felt pretty crummy last night and isn't feeling well this morning either. Hopefully she'll feel better by dinner time like she did last time. She's very happy to be done with this chemo, at least.
Adrienne will begin receiving Daniel's lymphocytes next Tuesday, and every three to four weeks after that, assuming she doesn't develop GVHD. She will get at least one treatment while at Claremont McKenna, but we haven't worked out those details yet. She'll either have to fly home for a day or they will need to ship the cells to City of Hope. We would prefer the latter.
Saturday, July 16, 2005
Back from Vacation
Adrienne and I got back from our visit to Montreal and Quebec last night. We had a great time sightseeing and eating at fabulous restaurants. It poured our first full day there but was sunny (and really hot) after that. Adrienne couldn't get over all the French-speaking Canadians and how nice they were. In Montreal, we spent a lot of time in Old Montreal and at the Olympic Park at the Biodome and Botanical Gardens. In Quebec, we mostly walked the streets and took in the sights. Adrienne isn't big on history or scenery but she humored me by visiting many churches, gazing at beautiful historical buildings, and taking in the sights. I think she really preferred the shopping and eating parts. The exchange rate wasn't great and the prices high so we didn't buy too many things. Today, we're just catching up on sleep after the long trip, putting the house back in order, and going grocery shopping.
It helped both of us to take our minds off the previous week's test results. Neither of us like the "watch and wait" approach, but Adrienne is really looking forward to some time off chemo. One option, if her cancer is growing again, is to put her on a maintenance dose of vinblastine every two weeks...indefinitely. There are people who have done this for many years without progression of their Hodgkin's Disease. Adrienne hates this option, of course, but it's there if we need it.
Daniel had two hospital visits this week. On Tuesday, he got his physical and blood tests required to donate lymphocytes to Adrienne. One of the test results came back "equivocal," not positive or negative, so he had to go in again on Friday to get more tests. We should have final results on Monday. Assuming the tests are okay, he'll donate on Tuesday while Adrienne gets her chemo. It should be a "fun" day running back and forth between the cancer center where Daniel will donate and the children's day hospital where Adrienne will get her chemo. She also has an MRI on her joints to assess the extent of her avascular necrosis.
Curt returns from Vietnam on Sunday. He spent two days in the hospital with food poisoning from some bad crab. I don't know all the details yet but it sure doesn't sound like fun.
It helped both of us to take our minds off the previous week's test results. Neither of us like the "watch and wait" approach, but Adrienne is really looking forward to some time off chemo. One option, if her cancer is growing again, is to put her on a maintenance dose of vinblastine every two weeks...indefinitely. There are people who have done this for many years without progression of their Hodgkin's Disease. Adrienne hates this option, of course, but it's there if we need it.
Daniel had two hospital visits this week. On Tuesday, he got his physical and blood tests required to donate lymphocytes to Adrienne. One of the test results came back "equivocal," not positive or negative, so he had to go in again on Friday to get more tests. We should have final results on Monday. Assuming the tests are okay, he'll donate on Tuesday while Adrienne gets her chemo. It should be a "fun" day running back and forth between the cancer center where Daniel will donate and the children's day hospital where Adrienne will get her chemo. She also has an MRI on her joints to assess the extent of her avascular necrosis.
Curt returns from Vietnam on Sunday. He spent two days in the hospital with food poisoning from some bad crab. I don't know all the details yet but it sure doesn't sound like fun.
Wednesday, July 06, 2005
Not Great News
Yesterday, we got the actual PET and CT reports and it looks like Adrienne's disease is actually growing again in her neck. While the node is quite small (6 mm), this is concerning because it means that Adrienne is no longer responding to the chemo. In the past, she always responded and even had long periods of remission. Adrienne's doctor is out of town so we spoke with another doctor and decided to go ahead with yesterday's chemo as originally planned, hoping that it would at least keep things under control. We probably won't know more until tomorrow.
We met with the BMT team yesterday and signed the consents for the DLI but it seems unlikely now that we will go in that direction. DLIs have not been effective in people whose disease is unresponsive to chemo. In that case, the risk outweighs the benefits.
We are still planning to go on vacation on Friday. We really need the break, especially now, and are looking forward to getting away.
UPDATE: I spoke with Adrienne's doctor this morning. He would like to take a "watch and wait" approach to Adrienne's PET. If the node gets bigger, they will biopsy it (and remove it at the same time). Otherwise, she'll have another PET scan in 4 to 6 weeks time.
Adrienne will have her last chemo on July 19 and the first DLI on July 26, hoping that the DLI eradicates any residual disease. The doctor thinks that the node is small enough that the DLIs could help. She will get four DLIs, starting at a very low dose and working up to a higher dose, hoping she doesn't get any graft vs. host disease.
We met with the BMT team yesterday and signed the consents for the DLI but it seems unlikely now that we will go in that direction. DLIs have not been effective in people whose disease is unresponsive to chemo. In that case, the risk outweighs the benefits.
We are still planning to go on vacation on Friday. We really need the break, especially now, and are looking forward to getting away.
UPDATE: I spoke with Adrienne's doctor this morning. He would like to take a "watch and wait" approach to Adrienne's PET. If the node gets bigger, they will biopsy it (and remove it at the same time). Otherwise, she'll have another PET scan in 4 to 6 weeks time.
Adrienne will have her last chemo on July 19 and the first DLI on July 26, hoping that the DLI eradicates any residual disease. The doctor thinks that the node is small enough that the DLIs could help. She will get four DLIs, starting at a very low dose and working up to a higher dose, hoping she doesn't get any graft vs. host disease.
Sunday, July 03, 2005
Very Preliminary Scan Results
Adrienne had two scans this week: a PET/CT and CT with contrast. The PET scan shows metabolic activity in cancer cells while the CT scan shows enlarged lymph nodes. The CT with contrast is more detailed, showing more about lymph nodes as well as the other organs.
I got preliminary results over the phone on Friday afternoon. At first, it sounded like there was increase activity on the PET and a new enlarged lymph node on the esophogus. However, I went back and read the previous scan report from March and it sounded very similar. So, rather than spending the weekend in a panic, we're trying to have a good time and wait for an explanation on Tuesday. Adrienne's doctor was out of town this week and doesn't return until Wednesday so another attending will talk with the radiologists on Tuesday. We wanted to do the scans the previous week while the doctor was here but he wanted them last week when Adrienne didn't have chemo.
Some good news: Adrienne's liver is better after the scare last year. It is actually a bit smaller and the congestion in the lower lobe is gone.
Some bad news: Adrienne has avascular necrosis (AVN) in her hip. AVN is a disease resulting from loss of blood supply to the bones, causing the death of bone and tissue, and eventually collapse of the bone. She had hip pain several months ago while training for TNT but an xray was normal. She was advised to stay off her feet and take Naproxen (Aleve) on a regular basis, which made things feel better. Apparently, an MRI is needed to correctly diagnosis AVN. The problem is caused by all those steroids she took with chemo, and for pneumonitis and graft vs. host disease, and will probably require surgery.
Daniel drove to Santa Barbara with a friend this weekend to visit his dad so it's quiet here with just Adrienne and I. His senior picture proofs came in Saturday's mail and they're great. I can't wait to have matching pictures of the kids. Curt is still in Vietnam and will be back around the middle of July.
I got preliminary results over the phone on Friday afternoon. At first, it sounded like there was increase activity on the PET and a new enlarged lymph node on the esophogus. However, I went back and read the previous scan report from March and it sounded very similar. So, rather than spending the weekend in a panic, we're trying to have a good time and wait for an explanation on Tuesday. Adrienne's doctor was out of town this week and doesn't return until Wednesday so another attending will talk with the radiologists on Tuesday. We wanted to do the scans the previous week while the doctor was here but he wanted them last week when Adrienne didn't have chemo.
Some good news: Adrienne's liver is better after the scare last year. It is actually a bit smaller and the congestion in the lower lobe is gone.
Some bad news: Adrienne has avascular necrosis (AVN) in her hip. AVN is a disease resulting from loss of blood supply to the bones, causing the death of bone and tissue, and eventually collapse of the bone. She had hip pain several months ago while training for TNT but an xray was normal. She was advised to stay off her feet and take Naproxen (Aleve) on a regular basis, which made things feel better. Apparently, an MRI is needed to correctly diagnosis AVN. The problem is caused by all those steroids she took with chemo, and for pneumonitis and graft vs. host disease, and will probably require surgery.
Daniel drove to Santa Barbara with a friend this weekend to visit his dad so it's quiet here with just Adrienne and I. His senior picture proofs came in Saturday's mail and they're great. I can't wait to have matching pictures of the kids. Curt is still in Vietnam and will be back around the middle of July.
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