Wednesday, September 23, 2009

WARRIOR - ILA JEAN, NEW YORK, USA

Ila with her sister Monica and brother Howie
Cute as a button Ila

What a cutie Pie! Meet Ila Jean from New York , Usa!




Background Story
On August 28, 2006, Ila Jean was admitted to Albany Med Childrens Hospital with a mass in her abdomen found by CT scan that morning at St. Clare's. Scans that week showed disease in her femurs, right hip bone, L4 vertebrae, sphenoid bone, left ocupit(back of skull), a large tumor in her abdomen filling her entire right side and crossing over to the left side and a tumor in her sphenoid sinus cavity. Her tumor was biopsied on 8/30/06 and was found to be stage IV Neuroblastoma with n-myc amplification and poor shimada. Her bone marrows were shown to be heavily involved and her central line was placed.


She started her first round of chemo the next day. After round 3 she had her stem cells harvested. After round 5 her abdomenal tumor was removed and a g-tube was placed. After round 6 her sinus tumor was removed then she had round 7 of chemo. Scans were then done to prepare for bone marrow transplant. Apprehensive about the procedure, we looked into a trial at Sloan Kettering. At that point we decided not to do transplant and to go straight to 3f8 antibody treatment at Sloan.


Scans after round 7 still showed disease present in her hip, skull and spine as well as bone marrow, so Sloan added the 8th round of chemo. Scans again showed disease present on our first trip to Sloan in her skull, hip, bone marrow and a new spot in her upper right arm.


The doctors were discouraged and round 9 and 10 were added as outpatient along with 14 days of radiation to her right hip. Scans again showed disease, however much improved. Skull slightly showing and her hip and bone marrow. The arm was now clear.


The doctors were now very encouraged and added the 11th round of high dose inpatient chemo. Scans again showed improvement so the doctors added round 12 of chemo.


We started 3f8 treatment at Sloan on 8/20/07. After getting her first round, she was HAMA positive. A week later she was negative and started her second round of 3f8. The 2nd round was stopped when she became HAMA positive again. Ila had radaition to her hip, abdomen and skull from October 16th to the 25th.


She was put back on chemo as maintenance to prevent her from relapsing until her HAMA level came back down. After 4 more rounds of chemo (16 in all), our prayers were answered!




On February 7, 2008 Ila was declared NED!! She was also HAMA negative.




She finished 3 more rounds of low dose chemo bringing the grand total to 19 rounds then went back for scans which were clear in April 2008.




She was still HAMA negative at that point and remained that way getting 2 more rounds of 3f8 with GMCSF. She also completed 2 rounds of Accutane.




On July 1, 2008, Ila is once again HAMA positive. On August 4, 2008, she was put back on chemo to try to lower her HAMA. After 2 rounds she was then put on a new trial using Rituxan with Cytoxin to lower HAMA. She then came home for round 22 of chemo. Two weeks later she was HAMA negative and received her 3rd round of 3f8 in which she experienced her worst pain to date including 2 trips to the Urgent care for fevers with one admit to the hospital.




To our surprise she was HAMA positive 2 weeks later and she finished her 23rd round of chemo. Scans in January 2009 were clear. She was also HAMA negative and finished her 4th round of 3f8 on January 23rd.




Ila was HAMA positive again and went back on Accutane. For the first time, Ila went 3 months between scans without Chemo and the week of April 13, 2009 scans were clear. Still HAMA positive, she did Rituxan again in May 2009. She had round 5 of 3f8 June 28, 2009.


Scans the next week are still clear.
Ila has had:
2 ultrasounds
19 CT scans
3 bone scans
16 MIBG scans
7 MRI's
4 central lines
2 PICC line
1 port a cath
15 Bone marrow biopsies/aspirates
14 xrays
7 ECHO cardiograms
28 doses of radiation to her right hip
14 doses of radiation to her skull and abdomen
23 rounds of chemotherapy
2 rounds 3f8 antibody w/glucan
5 rounds 3f8 antibody w/GMCSF
6 rounds Accutane2 rounds Rituxan/Cytoxin
10/31/06 - stem cell harvest
12/18/06 - abdomenal tumor resection & g-tube placed
1/18/07 - sinus tumor resection


7/9/09 - repair of gastric fistula( from g-tube removal)



Along with numerous blood transfusions and infections and countless trips to the clinic. Ila spent close to 100 days in the hopsital by 12/31/06 and has been in roughly 180 days inpatient to date. So far she has damage to her right optic nerve from the sinus tumor but 7/09 visit shows some signs of improvement. So far, her heart is showing no signs of any damage from the chemo. Her hearing exam in March 2008, showed high frequency hearing loss and she now wears hearing aids. She has a severe speech delay and is in speech therapy as well as preschool.




Ila remains NED and is continuing with her 3f8 treatments . Next set of scans is due middle of october and we ask you all to lift Ila up in prayer that she continues to remain NED and that she can recieve more rounds of 3f8 to chew up any cells that shouldnt be in her little body.




Ila has such a great and supportive family, and a very very busy Mommy who is studing at the moment while looking after her 3 gorgeous kids! Jenny, we thank you to for all the awarness you are creating, all the fundraisers you speak of, all the initiatives you make as aware of - thank yoyu! We wish you all the very best with your studying Jenny, hope you continue to enjoy it and hope you continue to get such fantastic results. Ila, stay as gorgeous as you are - i love reading your mommies stories about you and all the tricks and adventures you get up to - your pictures make us smile and your beautiful smile warms our hearts! Prayers, support, hugs and love always, praying for fantastic scan results for you in October and for you to remain NED always and forever!!!

Go and vist Ila and her family at http://www.caringbridge.org/visit/ILAJEAN


For those of you who dont know, i thought i would include a little information on what 3f8 antibody treatment is all about

What is 3F8?
3F8 is the name of a substance called a monoclonal antibody. It attaches to GD2, which is a marker on the surface of neuroblastoma cells. 3F8 was produced by white blood cells of mice, and it must be carefully prepared for human use. 3F8 is part of our standard treatment for high-risk neuroblastoma and is only available at Memorial Sloan-Kettering.
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3. How does 3F8 work?
When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient's own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient's immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them. The treatment is effective even when a patient's immune system has been weakened by chemotherapy treatments because chemotherapy does not affect the part of the immune system that responds to 3F8 antibodies. Over time, as the body's immune system becomes stronger, 3F8 treatments may help the body learn to fight tumors on its own.
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4. How do we know 3F8 has reached neuroblastoma cells in patients?
When 3F8 is injected into the body, we attach a radioactive isotope called 131-iodine (131I) or 124-iodine (124I). A gamma camera or a PET scanner is then used to scan the patient's body, allowing us to see radioactivity (from the radioactive iodine) in areas with neuroblastoma, but not in parts of the body in which neuroblastoma cells are not present.
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5. How long have 3F8 treatments been available?
Since 1987, over 30,000 infusions of 3F8 have been safely used in more than 500 patients. During this time, we have continued to make improvements to the effectiveness of 3F8 in killing neuroblastoma.
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How is 3F8 administered?
3F8 is given intravenously through a Broviac, Hickman, MediPort, or peripheral line (all means of injecting substances into the bloodstream) on an outpatient basis. When being treated with 3F8, patients usually need to be in the clinic for about three hours. This includes time for giving medicines to prevent possible side effects, the 30-minute 3F8 treatment, and one to two hours to monitor the patient for side effects. 3F8 treatment is provided in one- or two-week cycles.
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9. How long will a patient need to be treated with 3F8?
3F8 treatment is provided in what are referred to as rounds or cycles of one- or two-week periods of daily infusions (except weekends), approximately three weeks off in between rounds. The number of rounds of 3F8 treatment will vary depending upon the protocol, but typically patients will receive at least two to four rounds. The primary consideration in determining the length of 3F8 treatment is that we want patients to receive at least 400 mg/m2 of 3F8 before developing human anti-mouse antibodies (HAMA) to the 3F8. See below for more information about HAMA.
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10. What are the common side effects of 3F8?
Pain is the main side effect. All patients have pain. The second most common side effect is rash (hives with itching), which is an allergic reaction. Pain can lead to a fast pulse (rapid heart rate) and sometimes causes high blood pressure for a short period. Less-common side effects include fever, vomiting, and diarrhea. These problems can usually be taken care of in the outpatient clinic, but sometimes a patient needs to be admitted to the hospital for an overnight stay. In the neuroblastoma outpatient clinic at Memorial Sloan-Kettering, we routinely treat 10 to 12 patients a day with 3F8, and manage side effects of the treatment without much difficulty.
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11. Why does 3F8 cause pain?
3F8 attaches to GD2, which is present on some nerve cells as well as on neuroblastoma cells. When 3F8 attaches to a nerve cell, a message is sent to the brain, and the patient feels pain. The pain usually starts toward the middle or end of the daily 3F8 treatment and lasts a short time (usually from a few minutes up to an hour). Sometimes discomfort or minimal pain continues during the hours after the treatment. Medicines are used to prevent or control the pain (usually morphine or Dilaudid) and the allergic reactions (usually Benadryl or Vistaril). Ativan and Zofran are other medicines that can help. Patients who were treated with 3F8 beginning in 1986 have been followed, and to date, no permanent side effects on their nerves have appeared.
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12. What is HAMA?
HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from the white blood cells of a mouse. This means that 3F8 looks different from a human antibody, and thus patients will eventually form antibodies (HAMA) against 3F8. Once a patient has developed HAMA, 3F8 treatments no longer effective because the HAMA blocks the 3F8 from getting to neuroblastoma cells. If the patient has received the desired amount of 3F8 (see next question for further information) by the time HAMA has developed, then treatment with 3F8 will be discontinued. However, if the patient has not yet received the desired amount, it is possible that HAMA may recede, and in that case we can resume 3F8 treatments. We conduct a blood test for HAMA usually one to two weeks after each round of 3F8 infusions. Patients with HAMA usually do not have pain or other side effects from 3F8 treatment.
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13. Is HAMA good or bad?
HAMA is a positive sign in that it may mean the patient is developing an immune response against the neuroblastoma. However, when HAMA develops before the patient has received the usual 400 mg/m2 of 3F8 (two to four cycles), it may interrupt treatment. (As noted above, once HAMA is present, the 3F8 treatment is no longer effective.) Once HAMA has receded, treatment can resume. Most patients who have received chemotherapy only a short time before 3F8 treatment do not produce HAMA because part of their immune system is too suppressed. In these cases, 3F8 treatment will usually continue for up to two years. The aim of our protocols is to give repeated treatments with 3F8 until HAMA is made, because we believe that approach yields the best chances for cure. We continue to study HAMA to get a better understanding of how it may hurt or benefit patients in the long term.
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