Better This Time

Adrienne is feeling better with this treatment than last time. Her symptoms (fever, headache) only lasted about a day and she didn't itch like she did the first time. Her appetite is better too. We aren't sure if she's getting used to it or if it's because she got a lower dose. Apparently, a patient on the trial had some adverse effects so the drug company lowered the dose for all patients. We don't know what will happen next time.

Second Treatment Done

Adrienne had her second treatment of the new drug yesterday. With the port, things went much smoother but she was still there all day. In fact, she fell asleep late in the day and by the time she woke up, the clinical trial coordinator was gone and her port was still hooked up. After paging the coordinator twice (with no answer), she decided to find a nurse and get "disconnected." She woke up with a headache this morning and was running low grade fevers by the afternoon. Hopefully this will all last a day or two like last time and she'll be feeling better for the weekend. I found out that she won't have scans until the end of August so it will be awhile until we know if this drug is working.

I added a link to Adrienne's history in the Links list. If you'd like me to add anything or write about something else, let me know. I figured out how to use Google documents to add pages and links to the blog.

I got my stitches out last week and the hand is healing just fine. I still can't do everything but at least I can take a shower and brush my teeth now.

Adrienne's History

I started this blog when Adrienne relapsed in early 2005. The goal was to keep friends and family updated on her progress. I never thought it would continue for this long or that so many people would be reading. Since she was diagnosed so long ago, I thought a history might be useful.

1995-1996: Itching began. Adrienne saw her pediatrician, a dermatologist, and an allergist, all to no avail. We thought she had hives but it turns out that the itching caused the welts and sometimes bleeding where she scratched.

November-December, 1996: A lump appeared at the base of Adrienne's neck. Her blood counts showed anemia while a chest xray was normal. By this time, she had constant fevers so it took some time to get a biopsy. The biopsy finally confirmed that she had Hodgkin's Lymphoma, nodular sclerosing type, and we were referred to Lucille Packard Children's Hospital at Stanford, to one of the leading pediatric Hodgkin's specialists in the country. Staging at that time was fairly rudimentary requiring a lymphangiogram, CT scan, and gallium scan (which showed a false negative). Adrienne was diagnosed as Stage IIIB with lymph node involvement through her neck, chest, abdomen, and pelvis, including her spleen. Her largest node in the mediastinum was 5.5 cm and the largest node in her abdomen was 8 cm. In a child of that size, she was considered bulky because more than 1/3 of her chest had tumor.

January, 1997-October, 1997: Adrienne received a study protocol known as VAMP/COP (vinblastine, adriamycin, methotrexate, prednisone/cytoxan, vincristine, procarbazine). The goal was to reduce the toxicity of the standard protocols at that time while providing a comparable cure rate. She received two cycles of chemotherapy followed by mediastinal (chest) radiation, two more cycles of chemotherapy followed by abdominal radiation, and two final cycles of chemotherapy followed by pelvic radiation. She had surgery to move her ovaries out of the field of radiation prior to her pelvic treatments, but they still received scattered radiation. During these months, she had multiple infections and hospitalizations, but no major complications. In those days, there was no neupogen or neulasta or procrit so you just had to wait for counts to come up on their own. They later published the results from the study Adrienne was part of saying it was discontinued it due to a high number of late relapses, of which Adrienne was one.

August, 2001-July, 2002: First relapse with the largest node at 4.5 cm. In the months prior to this, she had pneumonia and fevers but no apparent lymph node involvement until a routine 6-month checkup with her oncologist. Once again, she was diagnosed as Stage III with disease in the same locations as the first time. She received two cycles of ICE (ifosamide, carboplatin, etoposide) and achieved a remission, but this was a very difficult protocol for Adrienne, leaving her weak and requiring multiple blood and platelet transfusions. This was followed by an autologous stem cell transplant with BCNU (carmustine), etoposide, and cytoxan and then consolidation radiation to the upper and lower halves of her body. Her only major complication was radiation pneumonitis, which has left some residual fibrosis in her lungs, as well as ovarian failure and sterility. Adrienne's counts took a long time to recover so she was in isolation for 6 months following the transplant rather than the usual 100 days.

September, 2002-February, 2004: Second relapse with the largest node at 2 cm. Adrienne was treated with one cycle of gemcitabine and vinorelbine and achieved a remission. Then she received a modified Stanford V (mustargen, adriamycin, vinblastine, vincristine, etoposide, and prednisone) without the bleomycin to protect her lungs. After one cycle, the adriamycin was removed because she showed some heart abnormalities. In January, 2003, we went to the Seattle Cancer Care Alliance/Fred Hutchinson for a new reduced-intensity conditioning allogenic transplant with Daniel (Adrienne's brother) as her donor. The transplant conditioning consisted of fludarabine, melphalan, and one dose of total body irradiation. This transplant was very, very difficult and there were many complications, the most significant of which was graft-vs-host disease of the mouth and gut. Adrienne was treated with immunosuppressants and high doses of prednisone for a year following the transplant. At her one year follow-up in Seattle, we found that she had cardiomyopathy as a result of her original treatment in 1997.

January, 2005-October, 2005: Third relapse with nodes in the neck (referred to as cervical nodes). Adrienne started with six cycles of gemcitabine and vinorelbine, which was initially effective, but she had a small amount of progression during the last cycle. Next she had three donor lymphocyte infusions from her brother, but her disease didn't respond. In the meantime, Adrienne was named a National Merit Scholar, received a small merit scholarship to Claremont McKenna College, and started her freshman year in Southern California, where she was seen at City of Hope, an NCI-designated cancer center. They had a new type of radiation, called tomotherapy, and they were able to treat the nodes while avoiding the spine and salivary glands. The radiation was very difficult but there were no long term side effects except that she developed hypothyroidism.

December, 2005: Adrienne developed avascular necrosis (AVN) in both hips as a result of high doses of prednisone required to treat her pneumonitis (first transplant) and graft-vs-host disease (second transplant). She had bilateral core decompression surgery over her break from college and did quite well. She had a clean PET/CT scan just prior to her surgery.

March, 2005-August, 2006: Fourth relapse. Adrienne began having pain in her right hip in March. We assumed that the prior surgery wasn't effective and that she would need a hip replacement. A routine PET scan in April showed activity in the hip. After a follow-up MRI and a very painful biopsy of the bone, this was confirmed as Hodgkin's. This is a very rare situation that none of Adrienne's doctors had ever seen but it was better than some of the other possibilities, such as leukemia or sarcoma. This was treated with radiation once again. In August, Adrienne had a follow-up PET/CT, which showed resolution of the hip lesion but a new 6mm node in the right lung.

September, 2006-October, 2006: We tried to get Adrienne enrolled in a clinical trial at City of Hope with a new drug called SAHA. To qualify for the trial, she had a CT scan, which showed no abnormal lymph nodes, that is, no lymph nodes over 1 cm. Since they couldn't track her disease with CTs, she didn't qualify for the trial so we had to watch and wait.

December, 2006-present: Fifth relapse. Adrienne had a routine CT scan that showed three areas of involvement including the same spot in the right lung, diffuse disease in the spleen, and an epigastric node near the liver. This relapse was confirmed by a PET scan, with the largest node being 1.3 cm. City of Hope suggested that she get tomotherapy radiation again, but given the lung fibrosis from her first transplant and the widespread nature of this relapse, we didn't feel comfortable treating with radiation. We decided to consult another doctor at Memorial Sloan Kettering in New York, who works closely with City of Hope. The plan they agreed on was to try a drug called valproic acid, similar to SAHA but readily available as an anti-seizure drug, and to watch Adrienne very closely. Adrienne took the drug for 5 months while her disease progressed very slowly. In May, 2007, she went to New York to be treated and to work at an internship. During the scans there, we found that she had a 50% progression in a period of about six weeks with the largest node now being 3.8 cm in the right lung and 3.7 cm in the spleen. Adrienne recently started a new clinical trial that we hope will keep her disease under control.

New Port

Adrienne got a new double lumen port-a-cath today. This is her fourth central venous access line since 2001. You might recall that she got the last one out in May because it wouldn't draw and she already has a new one. They just couldn't find enough good veins and were having trouble drawing blood. That's what a million different chemos will do, unfortunately. At least this way, she won't feel quite so much like a pin cushion. She's getting used to the adult world with less sedation but she says she doesn't mind so much.

Better Today

Adrienne is definitely feeling better today and the fevers have stopped. She still has little appetite but is able to get enough down so she doesn't feel too weak. She's been taking the bus the last few days because sitting sideways with no natural light on the subway made her feel ill, but she was able to take the subway to work this morning.

On Monday, Adrienne will have a new port placed. I don't think anyone anticipated how difficult it would be to get an IV into her and she needs two for the trial so they can give the drug and draw labs at the same time. She'll still need one IV for the day they give the drug but they can use the port for everything else.

Thank you for the notes and comments. Adrienne is overwhelmed by the support and love. She said, "wow, I didn't know so many people read my blog!"

About the Same

Adrienne is still having fevers and has little appetite, but she went to work this morning. Tylenol is helping with the fevers and soup is keeping her nourished and hydrated. Please leave her a comment so she knows that we're all here, hoping she feels better soon.

Spoke Too Soon

After feeling fine with the infusion yesterday, today's been a tougher day with intermittent fevers, loss of appetite, itching, and problems doing blood draws. Since the drug will affect her blood counts, Adrienne can't have sushi for awhile either, much to her disappointment. Tonight, it'll be a can of chicken soup for dinner. It looks like she'll definitely need another port since even the "IV team" is having trouble finding veins, so they're working on that now. We're back to the old one day at a time.

It's a New Day

I'm not usually the sentimental or spiritual type but we're all praying that today starts a new beginning for Adrienne. She finally got the new clinical trial drug and is feeling no ill effects, not even nausea. It took a bit longer to get started than we thought because of the need for approvals at all levels of Columbia and the drug manufacturer, but we finally got there. To her disappointment, she's going to miss the opening of the new Harry Potter movie tonight, but I'm sure she'll have another chance. As I said, I'm just glad she's feeling well and is in good spirits.

I seem to be on a minor run of bad luck that I hope is done now. Last week, I fell down some dark steps onto concrete with a glass in my hand. Part of the glass wound up in my hand, and I have a small break. I had surgery yesterday to remove four pieces of glass so I should be on the mend soon. My fingers look like sausages but this too shall pass. It's all small compared to what Adrienne deals with every day.

I hope everyone is enjoying their summer. We're now in the midst of the hottest days here in Las Vegas. Thank goodness for air conditioning.

Dates on the Calendar

Adrienne saw her doctor yesterday so now we have a schedule. She'll have a bone marrow biopsy and echo this week. Then on Monday, she'll get the new drug as well as a number of before and after blood tests. She has to go back on Tuesday for a blood draw 24 hours after the infusion. After that, she'll have an infusion every other week with blood work in between. Two other Hodgkin's Disease patients have done this trial and both have responded, which is great news. She can come home on August 6 and will return to NY on August 19. Of course, I already purchased a ticket for August 4 so I'm going to call the airline and beg them to waive the change fee.