Hello!
I would like to ask for help. My name is Arina. I am 26. I was born in St. Petersburg and I have a twin sister, Alina. We grew up and studied together. In 2001 we enrolled into the evening program at the University and we worked during the day. In 2007 we successfully graduated and then were admitted into PhD program.
Alina went on to study, while I began visiting doctors. What happened is that I have felt unwell before, and in September 2006, a lymph node on the left side on my neck enlarged. I also developed endless cough, was fatigued and sweaty at night, and had significant weight loss. Until I started treatment, I weighed just 45 kg. But I wrote everything off to stress, and thought that once I go on vacation and rest, everything will go away. This continued until October 2007, until I realized that I will not be able to make it to work. In addition, on the right side of my neck, another lymph node became palpable.
After much hassle, I was admitted to 1st Medical University for treatment. The histology testing confirmed diagnosis: Hodgkin's lymphoma with nodular sclerosis. In December 2007 I started treatment. I got an amazing treating doctor, Sergei Evgenievich Sozin. Together we completed eight courses of polychemotherapy under BEACOPP protocol. There was many difficulties, but Sergei Evgenievich always offered his emotional support to me and my family. In May 2008 we completed chemotherapy, after which PET scan showed partial remission. In July 2008, I received radiation therapy, after which I returned to work.
In October 2008, after control PET imaging that showed signs of progressing lymphoproliferative disease I was diagnosed with an early relapse. I was prescribed anti-relapse chemotherapy and collection of stem cells followed by their transplant. It so happened that only in December 2008 (due to circumstances outside of my control) I was administered high-dosage chemotherapy under ICE protocol. The doctors were not able to collect my cells. My body took a while to recover. In February 2009 I underwent PET and CT scans and the doctors discovered malignant process and new lesions in my right lung and mediastinum.
In April 2009 I was transferred to Gorbacheva BMT clinic for administration of another high-dosage chemotherapy round, this time under dexaBEAM protocol. It was very harsh and I developed side effects that I never experienced before. A decision was made to collect stem cells from my twin sister Alina and transplant them to me. The typing showed that Alina and I are a complete match.
Then we developed financial difficulties, even though we were able to manage on our own until that time. We need 11 bottles of Leuko-Stim/Neupogen at 300 mcg a bottle and two systems for leukapheresis. In the future, we may need other expensive medications. Currently, we cannot pay for them on our own. Alina is the only one in our family who works. My mother is retired and I am disabled. Please help us with buying medications, if you can! I am thankful in advance to everyone who will respond.

Respectfully, Arina
Contact phone:
+7 (981) 725-22-91
(Alina, Arina's sister)

Update as of June 4, 2009. Arina's sister already donated her bone marrow. Arina is now preparing for the transplantation.

Update as of June 18, 2009. Today I was discharged from Gorbacheva BMT clinic. I will describe the chronology of events.
On May 26, 2009 I started conditioning under BEAM regimen. On June 1-2, Alina (my sister-donor) donated her cells and they were transplanted to me. For a week, I was in cytopenia.
On June 10th the blood counts started to rise, and it happened rather quickly. As the doctors explained, my sister's cells were very active and fast.
Unfortunately, I did not avoid complications. I had fever, nosebleeds for two days and mucositis. With the rise in the blood counts, however, I started feeling much better, and by the time of discharge my leukocyte count was 3.5, platelets - 204, and hemoglobin – 80. I feel pretty well.
There is still an open issue with aspergillosis. Numerous tests at Kashkin Research Institute and Botkin hospital did not show fungal infections. However, an earlier CT scan shows lesions in my lungs that earlier were explained as alveolitis, pulmonitis or pneumonitis.
My treating doctor is trying to determine the origin of these lesions, so next week I will undergo CT scan of lung tissue, and if it does not produce a definitive answer, histological testing is possible.
At this time, I was prescribed Noxafil, which was replaced by Vfend. During my discharge, I received a bottle of Noxafil that will last me a week, and I am not sure how I am supposed to buy this medication if I will need it. It is extremely expensive.
I have serious problems with my liver and have to take Heptral, but in the future I will undergo examination and will probably require more serious and expensive course of treatment.
CT scan of my chest and PET imaging are planned in a month. Other than that, everything is great! I am finally home!
All my family is sincerely grateful to AdVita fund donors for invaluable help we received. I am thankful to the people who were sympathetic to my problems. I am wishing good health to everyone. Take care of yourself and your loved ones!
Respectfully,
Arina

Update as of June 29, 2009. I had CT scan that showed positive dynamic. The situation with aspergillosis is not yet clear, and, unfortunately, my treating doctor got sick. Currently, I do not need Noxafil.
I would like to express the heartfelt gratitude from my whole family to the sisters Katya and Sveta who gave me a package of Heptral and 3,000 rubles. It was so unexpected and came at the right time. Thank you, girls, for your care!
Arina

Update as of July 23, 2009. Arina is doing well, she is monitored as an outpatient.

Update as of July 24, 2009. On Wednesday, July 22, I underwent PET imaging. Based on its results, there were no areas with pathologic contrast accumulation in my chest, but according to the series of tomograms of abdominal organs, two lesions with pathologic accumulation of RPP were identified in liver parenchyma. The nature of these lesions is not yet clear.
Today's ultrasound (July 24th) did not show any lesions, but my liver is in a bad condition, practically non-functioning. I also developed chronic pyelonephritis.
On Monday I will go for the CT scan of three zones. Will see what it says. Now the most important thing for me is to gain weight, as I only weigh 43 kg.
I would like to express my gratitude to Masha for buying Heptral and supporting me emotionally. Thank you Masha!!!
Arina

Update as of August 6, 2009. On July 29th I had CT scan of three areas (chest, abdomen and pelvis). The results showed somewhat negative dynamic: a new lesion in the right lung, although lymph nodes did not increase. In liver parenchyma, two hemangiomas and enlarged lymph node in liver portal were noted. In right kidney parenchyma, a cyst that is 5 mm in size can be seen.
In regards to liver and kidney, these findings likely represent specific damage. The lesion in my lung is probably due to fungal infection. I am now running around and going for tests at Botkin hospital and Kashkin Research Institute.
Arina

Update as of September 8, 2009. Arina's aspergillosis diagnosis was confirmed. She now needs Vfend at 400 mg daily. Arina feels relatively well.

Update as of September 18, 2009. On September 16th Arina underwent a control CT scan, for purpose of which was to determine the sensitivity of aspergillosis to Vfend. The following was noted: "Presented positive dynamic compared to the previous testing, as lesions in the lungs have partially regressed, lesions in left love of liver regressed and lack of growth in the other lesions in lungs. As such, a single hemangioma remains in liver parenchyma that has significantly decreased in size".
However, the test discovered liquid in pericardial cavity and I will probably need a consultation with a cardiologist. So I will need to continue therapy with Vfend and Heptral. I feel better and better every day. Once again, I would like to thank Advita Fund for its invaluable help.
Arina

Update as of October 2, 2009. Once again, I would like to thank Advita Fund's supporters thanks to whose help I receive Vfend that I critically need right now. I would like to express my sincere gratitude to Vitaly Borisovich Tsiliakus and Evgeniya Abramovna Tarantul for their attention and support. Alina and I have successfully studied art for 4 years at Echo studio where they have taught for many years. I feel well and have finally got good appetite.
Arina

Update as of November 12, 2009. I need to have PET imaging of two zones. The test costs 10,000 rubles and scheduled for November 27th. Please help!
Thank you in advance.
Arina

Update as of December 4, 2009. Today I underwent PET imaging. All is well, there was no signs of metabolic activity of my disease. In the future I plan to go for CT scan to check for aspergillosis. I am thankful to all Advita fund supporters for helping to pay for the tests and treatment.
Arina

Update as of January 25, 2010. In the next few days, Arina is planned to be hospitalized at Mycology Research Institute for full examination. If CT scan results are good, she will be taken off Vfend.

Update as of April 3, 2010. Arina feels well. She is planned to have her next checkup at Kashkin Mycology Institute. Arina still needs Vfend.

Update as of April 22, 2010. Hello! Last week I was discharged from Kashkin Institute of Medical Mycology. I have great news: I was taken off Vfend!
I had CT scans of chest and abdomen with contrast, immunogram, and serum blood test for Aspergillus antigen, which was again negative. CT was without negative dynamic - both in terms of my primary diagnosis and mycology. My blood counts started to grow, which makes me very happy.
I will now go to Mycology clinic only in June for the control tests and a consultation. I feel great!
Once again I would like to thank AdVita fund and its supporters for their help with buying Vfend, emotional support and understanding. Good luck to you!
Arina

Update as of January 7, 2011. I am glad to share my good news: all is well. Last September, the doctors confirmed remission of my primary diagnosis. I am now monitored at Hematology Unit of Faculity therapy at State Medical University. The test results from Kashkin Mycology Institute also show remission for aspergillosis.
I am now starting new monitoring schedule: once every six months, which I am very happy about. The Expert Commission kept me on disability for another year, due to my frequent hospitalizations at Mycology Institute. I feel well, however, and only had a short cold during the whole time.
I would like to congratulate all Advita fund staff and donors with the New Year! Wishing you good health, happiness and success in your honorable work.
Thank you so much for everything!
Arina

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