Emma este iubire!

Raspunsuri - Pagina 7

Inceputul discutiei

Link direct catre acest raspuns OanaRusu spune:

o noapte usoara

Oana, mami de
Ana Maria (intr-o zi de 13... 13 iunie 2008)
si Paul-Victor (ziua cea mai lunga: 21 iunie 2006)
www.desprecopii.com/POZECONCURS/folderview.asp?folder=Clipe%20de%20viata%202008&page=19" target="_blank">Clipe de viata 2008
1 martie 2009
Priveste partea buna a lucrurilor

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Link direct catre acest raspuns monicutza_bb spune:

Despre Seneca Valley Virus (SVV-001) facut de Neotropix 9la o cautare rapida):

"Neotropix(TM), Inc., a biotechnology company developing oncolytic viruses for the treatment of cancer, announced today that the FDA has approved its Investigational New Drug (IND) application for its first cancer drug candidate, Seneca Valley Virus (SVV-001).

The dose-escalating Phase I study will determine if SVV-001 can be systemically administered safely to patients with certain types of advanced neuroendocrine cancers, including small cell lung cancer. The study will also examine the distribution of the virus in the body, the elimination of it from the body, the immune response to the virus, and whether it affects the patients' tumors. At the end of the trial, Neotropix intends to select an optimal dose for further clinical studies."

Din cate inteleg eu este inca in faza 1 de studii clinice, abia dupa aceasta faza poate trece la administrare regulata la pacienti (altii decat cei pe care se testeaza in momentul de fata).

Ce am gasit foarte interesand este urmatorul paragraf:

Neotropix, Inc. is currently enrolling patients in a phase I study for the treatment of rhabdomyosarcoma tumors. Treatment is administered as a single dose of Neotropix’ oncolytic virus, Seneca Valley Virus (SVV-010) given in a 100mL intravenous dose of saline over 1 hour. SVV is a naturally occurring virus that has shown to be effective in treating rhabdomyosarcoma tumors in pre-clinical studies. Neotropix hopes to soon be enrolling pediatric patients (less than 18 years of age) in additional trials. For more information, go to www.clinicaltrials.gov or contact your physician."

Citatul este luat de aici, in josul paginii la trratament: http://www.neotropix.com/rhabdomyosarcoma.htm

Din ce inteleg eu cauta pacienti cu rhabdomyosarcoma, tratamentul fiind administrat ca o doza unica de Seneca Valley Virus (SVV-010). Pot fi contactati, poate Kissulina poate beneficia de SVV-010 fara a fi nevoie de deplasare undeva.

Iata cerintele pt a fi admisa in acest studiu:


Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No

Inclusion Criteria:

* Patients must have a histologically confirmed solid tumor (including carcinoid) with neuroendocrine features (i.e., expression of >= 1 of the following 3 markers: synaptophysin, chromogranin A, or CD56) that is metastatic or unresectable and for which standard curative or palliative measures do not exist or are no longer effective.
* Patients must show evidence of disease progression in the three months prior to treatment with SVV-001.
* Age >= 18 years. Because no dosing or adverse event data are currently available on the use of SVV-001 in patients <18 years of age, children are excluded from this study. Children may be eligible for future pediatric Phase I single-agent trials.
* Eastern Cooperative Oncology Group (ECOG) performance status 0 or 1.
* Life expectancy >= 24 weeks.

Adequate bone marrow, hepatic, and renal function as defined below:
o absolute lymphocyte count >= 1,000/ul
o absolute neutrophil count >= 1,500/ul
o platelets >= 100,000/ul
o AST/ALT <= 2.5 x upper limit of normal (ULN) or <= 5 x ULN if liver metastases present
o total bilirubin <= 1.5 x upper limit of normal

creatinine <= 1.5 x upper limit of normal OR
+ creatinine clearance (calculated) <= 60 mL/min/1.73 m2 for patients with creatinine > 1.5 x upper limit of normal.
* Women must have been surgically sterilized or be post-menopausal.
* Men must agree to use adequate contraception (barrier method of birth control; abstinence) prior to study entry and for up to 6 months.
* Ability to understand and the willingness to sign a written informed consent document.
* Patients must have oxygen saturation of at least 95% on room air.
* Patients must have measurable disease by RECIST (CT and/or MRI).

Exclusion Criteria:

* Patients with small cell histology.
* Patients who have been hospitalized for emergent conditions requiring inpatient evaluation, treatment or procedure during the 30 days prior to entry on study. In addition, emergent conditions requiring inpatient evaluation, treatment or procedure must have resolved or be medically stable and not severe for 30 days prior to entry on study.
* Use of chemotherapy or radiotherapy within 4 weeks of initiation of SVV-001, or continued > Grade 1 adverse events, excluding alopecia, due to agents administered more than 4 weeks earlier.
* Patients with clinically evident Human Immuno-deficiency Virus (HIV), Hepatitis B Virus (HBV) or Hepatitis C Virus (HCV) infection.
* Patients with > Grade 1 peripheral neuropathy (CTCAE version 3.0).
* Concurrent use of any other investigational agents.
* Presence of or history of central nervous system metastasis.
* Uncontrolled intercurrent illness including, but not limited to, ongoing or active infection, symptomatic congestive heart failure, unstable angina pectoris, cardiac arrhythmia, or psychiatric illness/social situations that would limit compliance with study requirements.
* Pre-menopausal women who have not been surgically sterilized. Although SVV-001 has no affect on the ovaries from a toxicological perspective, SVV-001 RNA is present in the ovaries at 12 weeks in animals that were administered high and medium doses. No pre-clinical reproductive tests have been conducted with SVV-001."

Aida daca este ceva ce pot face de aici, un telefon, o intrebare, un email, orice te rog sa imi spui. Sper ca esti constienta totusi ca este un medicament inca in teste. Nu stiu mai mult decat ce am citit in ultima jumatate de ora decand caut despre el si sper din tot sufletul ca asta sa fie minunea care o va salva pe Kissulina mica

Pretioasa Ema invinge cancerul.
Te iubim din tot sufletul.

Monica & printesa Aylin Nicole (27 iulie 2007) & nazdravan de Alex (18 iunie 2006) & tati

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body."

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Link direct catre acest raspuns axxxa spune:

din ce inteleg eu pacientii <18 ani si copiii nu sunt admisi pt studiu din cauza ca nu se stie dozajul pt ei sau efectele adverse.
dar poate am inteles aiurea...

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Link direct catre acest raspuns chimere spune:

Nu, axxxa, nu ai inteles aiurea, medicamentul nu se testeaza deocamdata pe persoane sub 18 ani, dar se pare ca in viitor vor "scoate" o varianta pentru copii.
Eu va citesc aici de mult, nu am scris niciodata, vreau sa stiti ca sunt si eu alaturi de voi cu tot sufletul si va doresc tot binele din lume!

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Link direct catre acest raspuns vias spune:

sper sa reusiti...

Cami,mamica ingerasului Darius-Andrei
n: 15.07.2008
d: 16.08.2008

ingerasul Darius-Andrei

9+ Darius mi-a trimis de ziua mamei cel mai frumos cadou, un bebe!

bebe pe care mami l-a visat ca e


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Link direct catre acest raspuns M&M spune:

Aida, sper sa reusiti..

pt Emma!!!

Cristina, mami de Mihaita

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Link direct catre acest raspuns madaiulia spune:

De cateva luni va citesc povestea si ma rog pentru Emma, dar nu am scris niciodata aici.
Am intervenit acum pentru ca am vazut ca vreti sa incercati un tratament nou si voiam sa va zic cateva vorbe din ce stiu eu despre studii. Poate Aida stie deja toate astea,sunt sigura ca a citit si studiat deja tot ce exista in literatura.
Ce voiam sa zic? Fiind studiu de faza I, produsul nu va fi gasit pe piata nicaieri in lume. Sansa Emmeiste sa fie inclusa in studiu. Site-urile unde se desfasoara studiul sunt listate pe link-ul dat de Adina Iulia si acolo sunt listate si adresele de mail ale investigatorilor principali. Trebuie luat legatura cu ei si vazut ce se poate face. Si nu vreau sa descurajez pe nimeni, dar in general nu sunt inrolati pacienti in afara conditiilor listate in design-ul studiului.
Mult succes sa reusiti.
Ma rog in continuare pentru Emma. Multa putere si sarcina usoara pentru mamica ei.

Mamica de David Andrei 10 iunie 2007

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Link direct catre acest raspuns aidaciolac spune:

Da , din pacate stiu asta foarte bine si americanul nu face nici un rabat de la regula pentru nimeni , nici macar pentru copii lor ... , dar citind despre medicament a incoltit iar speranta ... desi si aici la noi nici un medic nu se baga daca nu e testat pt copii ...
... din experienta multor cure si chiar daca am uitat ceva am totul notat as stii ce sa fac . Adica , hai sa fim seriosi. Ce se poate intampla mai mult? Singura chestie neasteptata ce s-ar intampla ar fi sa isi revina , ca in momentul asta se indreapta alergand spre d-na M

...va multumesc dragelor la toate , cine stie , poate gasim o doza ratacita pe undeva pt inceput...


Aida ... 16+
Poze cu noi
"Cand schimbati modul in care priviti lucrurile, lucrurile pe care le priviti se schimba"

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Link direct catre acest raspuns mychydutza spune:

sa va ajute Dumnezeu!ma gandesc mereu la voi si ma rog sa fie bine!

"mai avem nevoie si de iarba......"

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Link direct catre acest raspuns geta_florina spune:

Aida, Domnul sa va ajute sa gasiti ceea ce aveti nevoie. ma rog pt voi si va imbratisez cu drag.

Geta, mami de Alex

"Nu putem face lucruri mari pe acest Pamant, putem face numai lucruri mici cu multa dragoste"


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