Karina Rodini Neurofibromatosis treatment
Donation protected
INSTAGRAM-https://www.instagram.com/superandoaneurofibromatose/
I suffer from a genetic condition that causes huge tumors to grow on my legs and hips. I am 28 years old and I was diagnosed with neurofibromatosis type I at the age of two, the disease progressed in my adolescence years and since then I underwent countless surgeries and procedures in order to remove tumors that kept growing back bigger each time. Now the tumors weigh around 40 kg. I have recently set up a GoFundMe page in hopes to raise funds for my treatment that could change my life and also to help me with the costs of medicine and small surgeries and everyday expenses as unfortunately, I am not able to work.
UPDATE OF TREATMENT WITH THE MEDICINAL PRODUCT TRAMETINIBE (MEKINIST)
- In 2019 I started preparing to start chemotherapy treatment.
I performed all the tests that the doctors requested, among them the most important to start the treatment were:
- Sequencing of the mlpa of the Nf1 gene (DNA)
-images, MRI, CT, Thyroid, Breast;
- Complete blood test and many others you can imagine.
In August 2019, I started chemotherapy with the medicine Mekinist (Trametinib) for the reduction of the plexiform tumor.
I use one box a month, one tablet a day.
At the beginning of treatment in the first 20 days I started to lose weight, 8 kg in 15 days. This is the effect of chemotherapy.
After months, the medicine begins to have the long-awaited effect, which begins to reach the bad cells.
Along with the treatment that is very strong, there are its harms, due to the side effects of the medicine.
Which are:
-Eruption in the skin;
-Very dry skin;
-Very weak nails, come to fall;
-Very edema;
At 6/7 months of the treatment
It hit me much harder and some changes appeared.
A greater fatigue due to the weight of the tumor that has worsened and shifted, so it presses down, making it incredibly difficult to walk.
This weight makes me very tired and sometimes it takes me hour to simply stand up.
June / July / 2020
Heart exams were done to compare to the previous ones, and my heart is weaker (with less strength).
In these new exams that I did, other changes appeared:
- thyroid (Hypothyroidism)
-heart
-low immunity
-anemia
-urinary infection
I am already using continuous medication use to treat all these problems that arose.
NOTE:
I follow up frequently at the doctor, and I have exams every month for follow-up.
In August completed a year of chemotherapy.
-URGENT I need to perform one of the surgeries, because the tumor is hanging and needs to be removed.
I suffer from a genetic condition that causes huge tumors to grow on my legs and hips. I am 28 years old and I was diagnosed with neurofibromatosis type I at the age of two, the disease progressed in my adolescence years and since then I underwent countless surgeries and procedures in order to remove tumors that kept growing back bigger each time. Now the tumors weigh around 40 kg. I have recently set up a GoFundMe page in hopes to raise funds for my treatment that could change my life and also to help me with the costs of medicine and small surgeries and everyday expenses as unfortunately, I am not able to work.
UPDATE OF TREATMENT WITH THE MEDICINAL PRODUCT TRAMETINIBE (MEKINIST)
- In 2019 I started preparing to start chemotherapy treatment.
I performed all the tests that the doctors requested, among them the most important to start the treatment were:
- Sequencing of the mlpa of the Nf1 gene (DNA)
-images, MRI, CT, Thyroid, Breast;
- Complete blood test and many others you can imagine.
In August 2019, I started chemotherapy with the medicine Mekinist (Trametinib) for the reduction of the plexiform tumor.
I use one box a month, one tablet a day.
At the beginning of treatment in the first 20 days I started to lose weight, 8 kg in 15 days. This is the effect of chemotherapy.
After months, the medicine begins to have the long-awaited effect, which begins to reach the bad cells.
Along with the treatment that is very strong, there are its harms, due to the side effects of the medicine.
Which are:
-Eruption in the skin;
-Very dry skin;
-Very weak nails, come to fall;
-Very edema;
At 6/7 months of the treatment
It hit me much harder and some changes appeared.
A greater fatigue due to the weight of the tumor that has worsened and shifted, so it presses down, making it incredibly difficult to walk.
This weight makes me very tired and sometimes it takes me hour to simply stand up.
June / July / 2020
Heart exams were done to compare to the previous ones, and my heart is weaker (with less strength).
In these new exams that I did, other changes appeared:
- thyroid (Hypothyroidism)
-heart
-low immunity
-anemia
-urinary infection
I am already using continuous medication use to treat all these problems that arose.
NOTE:
I follow up frequently at the doctor, and I have exams every month for follow-up.
In August completed a year of chemotherapy.
-URGENT I need to perform one of the surgeries, because the tumor is hanging and needs to be removed.
Organizer
Karina Rodini
Organizer
Kitchener, ON
