Short form documentary about the Children's Neuroblastoma Cancer Foundation. A film about the struggles, discoveries and hope of families dealing with Neuroblastoma. Once you watch you can find out...
Tuesday, December 8, 2009
Saturday, August 2, 2008
Abdullah is NED
The ANBL 032 trial is a randomized trial. Even if we opted for it, we may just be part of the control group. We therefore declined the trial, as it had many side effects too, another 6 months @ hospital and no conclusive evidence of any benifit to the patient.
The last set of tests conducted on Abdullah showed that he has no evidence of disease (NED). The oncologists claim that this is the best possible situation he can be in. They wouldn't say he is in remission, but just that he has ~ 50% probability of being cured from this dreadful disease now.
He will be going in for MIBG and Echo testing end of September.
The last set of tests conducted on Abdullah showed that he has no evidence of disease (NED). The oncologists claim that this is the best possible situation he can be in. They wouldn't say he is in remission, but just that he has ~ 50% probability of being cured from this dreadful disease now.
He will be going in for MIBG and Echo testing end of September.
Tuesday, July 22, 2008
60 minutes - Neuroblastoma ; tv coverage 2 days ago
Power of Love
This video was broadcast on "60 minutes" on 20th July 2008.
It hilights the human aspect to Neuroblastoma as a childhood cancer.
Monday, June 30, 2008
Docs believe Abdullah is NED
Abdullah has now had his MIBG scan and the CT. The radiologists see 2 slightly enlarged lymph nodes (which are smaller than before), but have a positive conclusion of no residual neuroblastoma disease. The child seems and feels normal, just slightly sluggish, the current diagnostics show no symptom of the primary diagnosis. The final set of diagnostics is going to take place on Wednesday, the bone marrow and bone biopsy.
I am trying to rationalize my personal decision on the trial, I would have to convince my wife as she is not convinced on the trial, if I believe that the trial can benefit the child in some way.
links;
Wednesday, April 23, 2008
ANBL - 32 Clinical Trial; Post Primary Protocol
Abdullah is now a a candidate for a phase 3 immunotherapy clinical trial. This is the hardest decision making we are faced with yet in the treatment of our child. How can one rationalize to put their child through another 6 months of hospital, with at minimum a lot of pain, not knowing whether or not this trial will be beneficial in any way.
Description:
This study is being done to determine if monoclonal antibody Ch14.18 + cytokines + isotretinoin (13-cis-retinoic acid or RA) improves event free survival after myeloablative therapy and stem cell rescue as compared to RA alone in high risk patients with neuroblastoma who have achieved a pre-ASCT response of CR, VGPR, or PR. Patients will be randomized into one of two treatment arms (Regimen A or Regimen B). Patients in Regimen A will receive the drug cis-RA approximately 2 months following stem cell transplant. Patients begin 6 monthly treatments with 13-cis-retinoic acid and will take this drug by mouth twice a day for 14 days and then not take it for the following 14 days. This 28-day course will be repeated 6 times. Regimen B involves treatment with cis-RA as well as the experimental agent, C14.18, GM-CSF, and IL-2. Regimen B is given over six 28-day courses; there may be different combinations of drugs in the courses.
Criteria:
1. Patients must have a confirmed diagnosis of neuroblastoma, and categorized as high risk at the time of diagnosis. 2. Patients must not be older than 30 at diagnosis. 3. If patient is enrolled in study A3973, then the patient must have completed front-line therapy followed by ASCT and radiotherapy as outlined in A3973, AND have achieved CR, VGPR or PR at pre-ASCT evaluation. 4. If a patient is not enrolled on the study A3973, the patient will be eligible for this study if they are CR/VGPR/PR after treatment with one of the study designated induction regimens prior to a single cycle of high-dose therapy and ASCT. 5. No later than 9 months from the date of starting the first induction chemotherapy after diagnosis to the date of autologous stem cell transplantation should elapse. 6. Patients must not have progressive disease or biopsy proven residual disease if not enrolled on the study A3973 at the time of enrollment in this study. 7. Patients must have adequate renal, liver, cardiac, pulmonary and central nervous function.
Description:
This study is being done to determine if monoclonal antibody Ch14.18 + cytokines + isotretinoin (13-cis-retinoic acid or RA) improves event free survival after myeloablative therapy and stem cell rescue as compared to RA alone in high risk patients with neuroblastoma who have achieved a pre-ASCT response of CR, VGPR, or PR. Patients will be randomized into one of two treatment arms (Regimen A or Regimen B). Patients in Regimen A will receive the drug cis-RA approximately 2 months following stem cell transplant. Patients begin 6 monthly treatments with 13-cis-retinoic acid and will take this drug by mouth twice a day for 14 days and then not take it for the following 14 days. This 28-day course will be repeated 6 times. Regimen B involves treatment with cis-RA as well as the experimental agent, C14.18, GM-CSF, and IL-2. Regimen B is given over six 28-day courses; there may be different combinations of drugs in the courses.
Criteria:
1. Patients must have a confirmed diagnosis of neuroblastoma, and categorized as high risk at the time of diagnosis. 2. Patients must not be older than 30 at diagnosis. 3. If patient is enrolled in study A3973, then the patient must have completed front-line therapy followed by ASCT and radiotherapy as outlined in A3973, AND have achieved CR, VGPR or PR at pre-ASCT evaluation. 4. If a patient is not enrolled on the study A3973, the patient will be eligible for this study if they are CR/VGPR/PR after treatment with one of the study designated induction regimens prior to a single cycle of high-dose therapy and ASCT. 5. No later than 9 months from the date of starting the first induction chemotherapy after diagnosis to the date of autologous stem cell transplantation should elapse. 6. Patients must not have progressive disease or biopsy proven residual disease if not enrolled on the study A3973 at the time of enrollment in this study. 7. Patients must have adequate renal, liver, cardiac, pulmonary and central nervous function.
Tuesday, April 22, 2008
Stem Cell Transplant
The high dose chemo had clearly taken its toll on Abdullah. He had lost his skin coloration, looked like a bruised kid with dark patches all over his body. I would say he looked similar to how he looked after his 1st chemo. He seemed neutropenic today, he probably was as his wbc count was 0.8 today. He was sneezing pretty often.
His schedule for the day a laid out clearly by his nurse in the morning.
11 am; He was given a bath with some special chemicals to disinfect his body completely. He was then taken to a new clean air flow isolation room with an even greater pressure, room # 11 in unit 8B.
2 pm; He received just 40cc of his own tem cells in a transfusion that just lasted 20 mins. The procedure was simple enough, nothing very complex contrary to the general perception.
I guess stem cell transplants from ones own stem cells are simpler to carry out than bone marrow transplants from 3rd party donors. We did receive may phone calls asking whether the procedure went fine. Its not the procedure which causes the complexity, but its the super depressed immnue system, the extended neurtopenia due to the almost dead bone marrow (because of the high dose chemo) which causes the complexity. The below link gives more info on the stem cell transplant at the bone marrow unit; http://www.nhlbi.nih.gov/health/dci/Diseases/bmsct/bmsct_all.html
Abdullah wasn't talking to me , as he was pretty down because of the stong side effects of the high dose chemo. Infact he was recalling the mucusitus he had in the 1st round as he was probably experiencing the onset of the mucusitus this time round again. Mucusitus is a pretty horrible condition with no treatment. Sores in the lining of the mouth, throat, gut through to the anus. He couldn't even take in his own saliva and was drooling for period until neutrophils returned the 1st time around. We are expecting something similar this time around.
A more alaraming thing that happened post transplant was a new side effect from the transplant. High blood pressure and heart rate. He was give an oral medication which instantly reduced the blood pressure at 4 pm. Seemed to work pretty well. I was pretty content. I left for home early today @ 7pm as there was just 1 chair (used by asma) in the isolation room, and I wasnt allowed to sit on my sons bed. I also had to wear a new sanitized medical gown and mask while in the room, everytime I entered. I reached home @ 8pm and found out that Abdullahs high blood pressure and heart rate had returned. The docs and nurses were having a tough time bringing it down. They finally decided to give him lassex to reduce the blood pressure by lowering the fluid levels in his body.
I am mentally exhausted and would be going to bed early tonight.
His schedule for the day a laid out clearly by his nurse in the morning.
11 am; He was given a bath with some special chemicals to disinfect his body completely. He was then taken to a new clean air flow isolation room with an even greater pressure, room # 11 in unit 8B.
2 pm; He received just 40cc of his own tem cells in a transfusion that just lasted 20 mins. The procedure was simple enough, nothing very complex contrary to the general perception.
I guess stem cell transplants from ones own stem cells are simpler to carry out than bone marrow transplants from 3rd party donors. We did receive may phone calls asking whether the procedure went fine. Its not the procedure which causes the complexity, but its the super depressed immnue system, the extended neurtopenia due to the almost dead bone marrow (because of the high dose chemo) which causes the complexity. The below link gives more info on the stem cell transplant at the bone marrow unit; http://www.nhlbi.nih.gov/health/dci/Diseases/bmsct/bmsct_all.html
Abdullah wasn't talking to me , as he was pretty down because of the stong side effects of the high dose chemo. Infact he was recalling the mucusitus he had in the 1st round as he was probably experiencing the onset of the mucusitus this time round again. Mucusitus is a pretty horrible condition with no treatment. Sores in the lining of the mouth, throat, gut through to the anus. He couldn't even take in his own saliva and was drooling for period until neutrophils returned the 1st time around. We are expecting something similar this time around.
A more alaraming thing that happened post transplant was a new side effect from the transplant. High blood pressure and heart rate. He was give an oral medication which instantly reduced the blood pressure at 4 pm. Seemed to work pretty well. I was pretty content. I left for home early today @ 7pm as there was just 1 chair (used by asma) in the isolation room, and I wasnt allowed to sit on my sons bed. I also had to wear a new sanitized medical gown and mask while in the room, everytime I entered. I reached home @ 8pm and found out that Abdullahs high blood pressure and heart rate had returned. The docs and nurses were having a tough time bringing it down. They finally decided to give him lassex to reduce the blood pressure by lowering the fluid levels in his body.
I am mentally exhausted and would be going to bed early tonight.
Sunday, April 20, 2008
Chemotherapy Round 7: High Dose
Abdullah has finished his high dose chemo yesterday! This intense chemo round lasted 96 hours.
His weight was ~15kg before the high dose chemo, today it came down to 13.2kg.
Hes been put on ambizone for anti fungal treatment, as the docs suspected some fungus in his nose from the cultures take earlier. The ENT team was now directly involved the very first time. They were brought in the resolve the suspected fungal infection issue, as the possible fungus could easily spread to the rest of the body. A possible plan is to remove the fugus infected tissue under anesthesia.
I got back from Dubai on Friday afternoon and went straight to the hospital. My son came running and hugged me. Within half a hour, a nurse came in to tell us that he had to go for another CT, this time of the nose and sinus. I took him for a CT scan of his nose and sinus to check again for the suspected fungal infection.
He is currently on anti biotics, anti fungal drugs and anti virals.
The doctors plan to start his stem cell transpant on Tues 22, April, 2008.
His weight was ~15kg before the high dose chemo, today it came down to 13.2kg.
Hes been put on ambizone for anti fungal treatment, as the docs suspected some fungus in his nose from the cultures take earlier. The ENT team was now directly involved the very first time. They were brought in the resolve the suspected fungal infection issue, as the possible fungus could easily spread to the rest of the body. A possible plan is to remove the fugus infected tissue under anesthesia.
I got back from Dubai on Friday afternoon and went straight to the hospital. My son came running and hugged me. Within half a hour, a nurse came in to tell us that he had to go for another CT, this time of the nose and sinus. I took him for a CT scan of his nose and sinus to check again for the suspected fungal infection.
He is currently on anti biotics, anti fungal drugs and anti virals.
The doctors plan to start his stem cell transpant on Tues 22, April, 2008.
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