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.
Saturday, August 2, 2008
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.
Saturday, April 5, 2008
Depressing <7% cure statistic for bone metastatised neuroblastoma cancer
I received this post on my neuroblastoma mailing list. Information seems pretty recent. Have posted the contents to my neuroblastoma information research blog. Will hopefully review and understand this information with Dr Beracheul on Wednesday.
All of a sudden this info has changed my mood from optimistic to depressed, even after all the progress we have made so far.
post: curcumin-induces-apoptosis-in-human
All of a sudden this info has changed my mood from optimistic to depressed, even after all the progress we have made so far.
post: curcumin-induces-apoptosis-in-human
Thursday, April 3, 2008
Blood Work because of low platelets
We arrived at the hospital at about mid day.
Abdullah got his blood work done; the platelets were in the 30s today, i.e. the count were improving. His wbc count was over 10 and hemoglobin was in the 90s. All was good. No platelet tranfusion required.
He was now off gcsf , needed no more pokes. The nurse tried to heprenize his CVL the yellow one worked but the blue refused to flush. They were going to send us of for an xray to ensure that the CVL was in the right place, when I requested the nurse to push and pull a little harder. Abdullah raised his hands and started singing and his line started working. Lucky us no need to take him for the xray. Though I realized that if the home care nurse would be unable to flush we would have to go back to the hospital to do that x ray and potentially have to spend another day at the hospital.
Abdullah bought a R/C helecopter from the toy stalls in the lobby and we went back home.
We were at the hospital for 7 hours, and the entire trip was slightly over 8 hours. We left the house at 11:00 am and got back home at 7:30 pm.
Abdullah got his blood work done; the platelets were in the 30s today, i.e. the count were improving. His wbc count was over 10 and hemoglobin was in the 90s. All was good. No platelet tranfusion required.
He was now off gcsf , needed no more pokes. The nurse tried to heprenize his CVL the yellow one worked but the blue refused to flush. They were going to send us of for an xray to ensure that the CVL was in the right place, when I requested the nurse to push and pull a little harder. Abdullah raised his hands and started singing and his line started working. Lucky us no need to take him for the xray. Though I realized that if the home care nurse would be unable to flush we would have to go back to the hospital to do that x ray and potentially have to spend another day at the hospital.
Abdullah bought a R/C helecopter from the toy stalls in the lobby and we went back home.
We were at the hospital for 7 hours, and the entire trip was slightly over 8 hours. We left the house at 11:00 am and got back home at 7:30 pm.
Wednesday, April 2, 2008
MIBG Scan
My son had his MIBG scan today. Thank God that it showed no more neuroblastoma in the child. We got the result 3 hours after the scan. I guess writing an all clear report is easier than writing a report hilighiting issues.
I was going to arrive at the hospital in the afternoon, post scan procedure. This was a stressful test for us the parents as it would most likely show the neuroblastoma peresent still in the child's body.
I arrived @ the hospital at 14:00, and discovered that my wife and child were still with the nuclear medicine team doing the MIBG. It had been 2 hours. In my subconscious I thought there was something wrong.
My son came out of the scanning room after about 30 mins. He was really excited to see me. Well atleast he was done with 1 more test. Now it was just the bone marrow aspirate, bone marrow biopsy and CVL line change procedure remaining before the high dose chemo on the 14th/15th April, 2008.
My wife really wanted to go home, as she had been in hospital for over 2 weeks now so she negotiated to reschedule the bone marrow tests and cvl procedure to be done next week instead of tomorrow. The doctors willingly agreed as the childs platelets were less than 20. This would give him enough time to start producing enough platelets.
Abdullah got discharged and was understandably very excited to go back home. However we had go back to the hospital the next day to check his platelets again.
I was going to arrive at the hospital in the afternoon, post scan procedure. This was a stressful test for us the parents as it would most likely show the neuroblastoma peresent still in the child's body.
I arrived @ the hospital at 14:00, and discovered that my wife and child were still with the nuclear medicine team doing the MIBG. It had been 2 hours. In my subconscious I thought there was something wrong.
My son came out of the scanning room after about 30 mins. He was really excited to see me. Well atleast he was done with 1 more test. Now it was just the bone marrow aspirate, bone marrow biopsy and CVL line change procedure remaining before the high dose chemo on the 14th/15th April, 2008.
My wife really wanted to go home, as she had been in hospital for over 2 weeks now so she negotiated to reschedule the bone marrow tests and cvl procedure to be done next week instead of tomorrow. The doctors willingly agreed as the childs platelets were less than 20. This would give him enough time to start producing enough platelets.
Abdullah got discharged and was understandably very excited to go back home. However we had go back to the hospital the next day to check his platelets again.
Tuesday, April 1, 2008
Radiation Therapy Meeting
Today we had a meeting with the radiation doctors at Princess Margret Hospital close to the SickKids facility.
The meeting was to discuss the outline of Abdullah's radiation plan based on all the information so far. The doctors are planning 12 radiations to the left side of his belly and spine. The area potentially to be covered on the belly would be approximately 15cmx15cm.
The produre would require a cast created specifically for the contours of Abdullah, so that the radiations can be applied accurately and would be x-ray guided.
Abdullah would be awake during the produre, but alone for the period of time when the radiations are applied. The procedure length would be approximately 30 mins.
It would happen consectively every day at Princess Margret Hospital for 5 days in the 1st week post transplant, 5 days in the 2nd week and 2 days the following week.
The doctors explained the short term and long term side effects of the radiation.
Short term side effects;
Long term side effects;
The meeting was to discuss the outline of Abdullah's radiation plan based on all the information so far. The doctors are planning 12 radiations to the left side of his belly and spine. The area potentially to be covered on the belly would be approximately 15cmx15cm.
The produre would require a cast created specifically for the contours of Abdullah, so that the radiations can be applied accurately and would be x-ray guided.
Abdullah would be awake during the produre, but alone for the period of time when the radiations are applied. The procedure length would be approximately 30 mins.
It would happen consectively every day at Princess Margret Hospital for 5 days in the 1st week post transplant, 5 days in the 2nd week and 2 days the following week.
The doctors explained the short term and long term side effects of the radiation.
Short term side effects;
- Nausea and vomiting
- Loss of appetite
Long term side effects;
- Left side would be shorter than right. Slightly but visible.
- His height would be about 2 inches shorter than his actual height, because of the radiation on his spine.
- Atleast half of his left kidney will lose function as it would radiated. The function will automatically be compensated by the other kidney.
- ~10% cases develop secondary tumors.
Monday, March 31, 2008
Urine test result (VMA slightly elevated)
We received the child's urine test results today. Dr Baruchel informed my wife that they were normal and nothing to worry about, even though the childs VMA (vanillyl-mandelic acid) level was 7.8 (initially 120 when diagnosed) where the normal range is supposed to be between 0 - 5. His HVA (homovanillic acid ) level was 9 where the normal rage is 0 - 15.
VMA and HVA are metabolates of neuroblastoma cells and are used as an indicator of the disease. We were hoping that this indicator exhibited perfect results as a child who goes for high dose chemotherapy and stem cell transplant while in remission has a higher probability of cure and not relapsing. I am now researching VMA and its significance. Already came accorss some interesting material, check my neuroblastoma-info blog.
VMA and HVA are metabolates of neuroblastoma cells and are used as an indicator of the disease. We were hoping that this indicator exhibited perfect results as a child who goes for high dose chemotherapy and stem cell transplant while in remission has a higher probability of cure and not relapsing. I am now researching VMA and its significance. Already came accorss some interesting material, check my neuroblastoma-info blog.
Friday, March 28, 2008
Possible solution to high probability relapse issue, even after complete remission
This is something I was aware of but not explicitly. The below extract clearly hilights the issue and potential solution to the problem;
In spite of the satisfactory frequency of clinical response to first-line therapy in neuroblastoma (NB), complete eradication of NB cells is rarely achieved. As a consequence, the majority of patients with advanced stage NB undergo relapse, which is often resistant to conventional treatment and rapidly overwhelming. Thus, after induction of the apparent remission, new therapeutic strategies are needed to completely eradicate the small number of surviving NB cells and to prevent relapse. We explored the potential of different doses of the anti-GD2 monoclonal antibody (mAb) 14G2a in an experimental metastatic model where a limited number of HTLA-230 human NB cells are injected i.v. into nude mice, leading to extensive metastases and death of animals within 7–8 weeks. Treatment with 14G2a mAb (1–4 mg/kg cumulative dose given as five i.v. daily administrations) dramatically reduced the metastatic spread of NB cells and prolonged the long-term survival of treated mice in a dose-dependent manner. Neither macrophages nor NK cells appeared to contribute to the protective effect of antibody treatment in vivo, suggesting either an involvement of granulocytes or a complement-mediated cytotoxicity towards NB cells. Whatever the effecting mechanism(s) involved, these results strongly support the clinical use of anti-GD2 mAbs after first-line induction regimens.
Reference: Anti-GD2 monoclonal antibody immunotherapy: a promising strategy in the prevention of neuroblastoma relapse
In spite of the satisfactory frequency of clinical response to first-line therapy in neuroblastoma (NB), complete eradication of NB cells is rarely achieved. As a consequence, the majority of patients with advanced stage NB undergo relapse, which is often resistant to conventional treatment and rapidly overwhelming. Thus, after induction of the apparent remission, new therapeutic strategies are needed to completely eradicate the small number of surviving NB cells and to prevent relapse. We explored the potential of different doses of the anti-GD2 monoclonal antibody (mAb) 14G2a in an experimental metastatic model where a limited number of HTLA-230 human NB cells are injected i.v. into nude mice, leading to extensive metastases and death of animals within 7–8 weeks. Treatment with 14G2a mAb (1–4 mg/kg cumulative dose given as five i.v. daily administrations) dramatically reduced the metastatic spread of NB cells and prolonged the long-term survival of treated mice in a dose-dependent manner. Neither macrophages nor NK cells appeared to contribute to the protective effect of antibody treatment in vivo, suggesting either an involvement of granulocytes or a complement-mediated cytotoxicity towards NB cells. Whatever the effecting mechanism(s) involved, these results strongly support the clinical use of anti-GD2 mAbs after first-line induction regimens.
Reference: Anti-GD2 monoclonal antibody immunotherapy: a promising strategy in the prevention of neuroblastoma relapse
Tuesday, March 18, 2008
Chemotherapy Cycle 6
This chemo session is same as cycle 1,2,4.
The following drugs are used; cyclophosphamide ?? mg/kg, doxorubicin ?? mg/m(2), and vincristine ?? mg/kg (CAV)
Started on Thursday, 13th March 2008 and finished on 16th March 2008
The following drugs are used; cyclophosphamide ?? mg/kg, doxorubicin ?? mg/m(2), and vincristine ?? mg/kg (CAV)
Started on Thursday, 13th March 2008 and finished on 16th March 2008
Monday, March 3, 2008
Tumor resection surgery
We were very worried about the delays that took place. The surgery was originally scheduled for Wednesday 20th February 2008. It was postponed the first time as he had a low platelet count. The procedure was rescheduled for 27th February 2008. The surgeon was very concerned about us making it to the hospital @ 6.30am due to bad winter snow storms, that he requested us to stay the night at the Delta Chelsea hotel across the hospital. In the morning we were all ready to go for the procedure, when 2 emergency cases came in at the same time. The surgeon anticipated the emergency procedure to last about 4 hours, unfortunately it took longer and they had to reschedule our child's procedure again to the coming Monday.
My son finally had tumor resection surgery today 3rd March 2008. The surgeon, Dr Girstle, claims to have successfully removed my sons primary tumor which was slightly larger than an egg. It took him 2 hours to remove the primary tumor but 4 hours to removed the infected lymph nodes. There were a total of 5 specimens (1 tumor and 4 lymph node specimens) removed from within the child.
We got to see our son after about 8.5 hours, the sight of so many more tubes into our child made our hearts sink even more. He now had a new epidural tube for pain control, a chest tube to drain fluids, 2 intravenous lines (one in each hand) and a catheter in his penis to help drain his pee . There was a large L shaped tape on his abdomen, covering the stitches on the surgical incision.
The most traumatic thing for the child was the catheter sticking to his penis. He demanded that it be removed immediately and fell asleep again.
My son finally had tumor resection surgery today 3rd March 2008. The surgeon, Dr Girstle, claims to have successfully removed my sons primary tumor which was slightly larger than an egg. It took him 2 hours to remove the primary tumor but 4 hours to removed the infected lymph nodes. There were a total of 5 specimens (1 tumor and 4 lymph node specimens) removed from within the child.
We got to see our son after about 8.5 hours, the sight of so many more tubes into our child made our hearts sink even more. He now had a new epidural tube for pain control, a chest tube to drain fluids, 2 intravenous lines (one in each hand) and a catheter in his penis to help drain his pee . There was a large L shaped tape on his abdomen, covering the stitches on the surgical incision.
The most traumatic thing for the child was the catheter sticking to his penis. He demanded that it be removed immediately and fell asleep again.
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