Hello!
I am Irina Nikonova's mom. My only daughter is 16. In July 2008 she was diagnosed with osteogenic sarcoma of her left hip bone. In other words, cancer. We were referred to Petrov Oncology Research Institute in St. Petersburg for further testing and treatment.
On 30 July 2008, the diagnosis was confirmed. In a moment, everything collapsed. It seemed the earth was moving under my feet – I could not believe that my daughter was hit by such a terrible disease. Irina was administered four courses of polychemotherapy with Cisplatin, Epirubicin and Doxorubicin. Nausea, vomiting and anorexia became our constant companions. Post-chemotherapy, Irina had serious complications, such as grade III thrombocytopenia with hemorrhagic syndrome, grade II leucopenia, grade II anemia, grade III-IV anorexia, grade III hematologic toxicity, nephropathy, and nosebleeds.
On December 1, Irina underwent complex surgery, during which her knee joint afflicted by cancer was removed and replaced by endoprosthesis. Further treatment and rehabilitation require money. Until now, we managed on our own, but all our resources are now exhausted.
We need financial help to buy food, clothes, hygienic supplies and expensive medications, and to pay for the transportation (Irina stays at the hospital twice a month). We live in Veliky Novgorod and have to take taxis to the hospital as we do not own a car. Irina will need to undergo more chemotherapy.
Please help my daughter survive! Irina's recovery now depends not only on her doctors, but also on people's kindness. I will be very grateful to everyone who responds!

Respectfully,
Zulfia Anatolievna, Ira's mom
Home address:
173023 Veliky Novgorod,
Ul. Popova, d.6, k.2, kv.4, kom.14.
Contact phones:
+7 (921) 348-29-86 (St. Petersburg)
+7 (909) 566-89-80 (Novgorod)
+7 (906) 227-45-02 (Novgorod)

Epicrisis
Discharge summary

Update as of January 11, 2009. Irina's post-operative period has been very difficult. She has had high temperature for a month now. On January 2, she started the fifth round of chemotherapy and immediately developed complications as her blood counts dropped.
Still, Irina is trying hard to get well and she exercises her endoprosthesis. We are enormously grateful to our supporters who gave my daughter an amazing New Year's gift, special paints. Irina is very happy because she loves to paint!
Thank you for giving my daughter a reason to celebrate!
Ira's mom

Update as of February 13, 2009. Ira was discharged home. She will now need to undergo a course of rehabilitation to learn walking with her endoprosthesis. After a consultation at Military Medical Academy, a neuropathologist prescribed her several medications for a long-term therapy.

Update as of October 1, 2009. Unfortunately, Ira had a relapse. She is now undergoing anti-relapse chemotherapy at Oncology Research Institute.

Update as of October 14, 2009. Ira had a relapse and got a new soft-tissue tumor. She is planned to undergo high-dosage chemotherapy, surgery and further treatment.
On September 30th Irina completed the first round of high-dosage chemotherapy with Methotrexate. The second round was postponed due to complications. Irina suffers from problems with her heart, kidneys and liver.
She also developed stomatitis. For a week now, she has been receiving Heptral, which she needs daily (2 ampoules a day). Each ampoule costs 400 rubles. Ira also takes Ursofalk in pill form, and needs other medications for her heart. Without your help, it is very difficult to fight the disease, and we fight and hope for recovery. We live with this hope now, but unfortunately, had to ask for your help, because I left my job to stay around the clock with Irina, and we have no sources of income other than Irina's disability pension. Thank you very much! God bless you!
Ira's mom

Update as of October 28, 2009. Ira completed the second round and went with her mom home to Novgorod for quota for treatment.
The second round too was very difficult for Ira. She had damage to liver, kidneys and heart. Her liver counts were staying very high, while stomatitis and mucositis did not heal even between the rounds.
Ira needs continuing therapy with Heptral and Ursofalk to protect her liver, and Mexicor and Diltiazem to support her heart. The cost of these medications exceeds combined income of Ira and her mom.
In addition, each trip from the hospital home costs them 3,500 rubles. We will be very grateful if one of the volunteers who own cars could bring Ira and her mom from Veliky Novgorod to Oncology Research Institute in Pesochny on November 5.
On November 5 Ira will start the third round of anti-relapse chemotherapy, the results of which will help determine further treatment. Please support Ira and her mother!

Update as of December 22, 2009. On December 16 Ira had a surgery which was successful and the tumor was removed in full. The drainage has been removed today, Ira is feeling ok, she's recovering from the surgery. Most importantly, the doctors managed to retain the leg!
Histology results will come around December 26 and the decision on further treatment will be made based on them.

Update as of January 10, 2010. During the holidays, Ira was allowed to go home. She feels rather well and is in a good mood. On Monday, her doctors will let us know the histology results, and the next chemotherapy cycle will also be scheduled.

Update as of February 1, 2010. The histology results weren't very good. There are live tumor cells. On February 16th Ira has to come to the clinic and based on the results of tests further treatment will be determined.

Update as of February 23, 2010. On February 16th Ira underwent tests. Everything is well and remission was confirmed.
Now Ira will need to come for ultrasound test at Oncology Research Institute on March 9-10. A week later, she will need to go for an x-ray, second ultrasound and EKG. CT scan is scheduled for the beginning of April. In total, Ira and her mom will need to make at least three trips to St. Petersburg from Novgorod.
Ira walks with much difficulty, with a stick, as she has not yet fully recovered after the surgery. She cannot take public transportation. Each trip costs Ira's family 4,000 rubles one way, which is much more than their budget can afford.
If one of the volunteers could bring Ira and her mom to St. Petersburg on March 9-10 or help with paying for the trip on a rental car, we will be very grateful.
There is one more issue - On April 2, Ira will turn 18. She was already told that from then on, all the tests will be billed at full cost, despite her having a treatment quota.

Update as of March 24, 2010. On March 10th we came for a checkup, but unfortunately, the x-ray machine was broken and we had to return home after undergoing just an ultrasound. Then we returned to St. Petersburg for x-ray and CT scan of lungs.
Ira's lungs are clear, but both ultrasound and an x-ray showed lesions at the juncture of the bone and endoprosthesis. The doctors feel they represent calcifications.
However, four days ago Ira started having serious pains in her leg, and then got a red spot and a pea-sized lump.
Next week we need to go to St. Petersburg again to find the reason for this. We are hoping that it is not a relapse! Ira is feeling depressed and cries often.
The frequent trips from Novgorod to St. Petersburg and back are making her very tired. Also, each trip costs us 4,000 rubles, which is very difficult to afford out of our miserly budget.
We will be very grateful for any help!
Ira's mom

Update as of April 3, 2010. Last Tuesday we went to St. Petersburg, where Ira had CT scan of her lungs and x-ray of leg. All is well. Ultrasound machine was broken, unfortunately. Thank God, there was nothing seriously wrong with Ira's leg - the pain was due to post-surgical sore that accumulated pus. After treatment, swelling went down and Ira's leg stopped hurting. Ira had stopped worrying about it.
Yesterday she had a birthday. She had her girlfriends from school at the party. The next checkup with EKG, ultrasound, x-ray and scintigraphy is scheduled for April 27th. We were reminded once again that because Ira is already 18, we will have to pay for the tests.
Ira's mom

Update as of May 7, 2010. On May 5th Ira was hospitalized and had tests. Tomorrow Ira will have EGD, and after the holidays she will have surgery due to suspicious lesion in her leg.
Very untimely, I broke my arm and got a bad cold with high fever.
Ira's mom

Update as of May 26, 2010. Ira had surgery during which a tumor from her leg was removed. She is being discharged home today. In a month she will have to return to the clinic for the tests. She feels rather well.

Update as of May 27, 2010. Based on histology test results, Ira had granuloma removed, which means it is not a metastasis. However, there is a new reason for concern: next to the surgery site, two new bumps are growing. They are small for now, and if they are not growing quickly, then Ira is still scheduled to return to Oncology Research Institute in a month.
Ira's mom had a cast taken off. Unfortunately, she lost her job and now she and Ira are left without any money.

Update as of June 16, 2010. Based on results of an ultrasound and x-ray, Ira was diagnosed with a relapse. She has a lesion in her leg sized up to 2 cm in diameter and four smaller neoplasms, ranging from 2mm to 6 mm. Also, a lesion of about 3 mm was found in her lung. CT scan of lungs, and possibly scintigraphy, are scheduled for tomorrow.

Update as of July 5, 2010. On July 1, Ira had surgery to remove a metastasis in her leg. She recovered after surgery and feels rather well. On July 8th she is planned to have surgery to remove a metastasis in her lung.

Update as of July 14, 2010. Ira already had a few stitches taken off her leg and was allowed to go for walks. For now she can only whisper, as she still has pain in her throat and rib cage, but she is much better overall.

Update as of August 5, 2010. Ira was referred for a consultation and autologous bone marrow transplantation at R. Gorbacheva Pediatric Hematology & Transplantology Institute. Today she underwent tests. All is well, except for a crack in her bone at the joint with endoprosthesis that was found during tests.
On August 9th Ira will be expected at the clinic for stem cell collection. She feels well, although she has some pain at the stitch where a neoplasm was removed from her lung.

Update as of August 20, 2010. The doctors were unable to collect sufficient volume of stem cells for autologous transplantation.
This week Ira and her mom live at the rented apartment. Twice daily they come to the clinic for stem cell stimulation with Neupogen. On August 23rd Ira is scheduled for collection of cells by aphaeresis, without the surgery. Ira does not feel very well. She suffers from pain in her leg and her lung. Ira can barely walk and has a difficulty speaking, possibly due to viral infection in her throat that affected vocal chords.

Update as of August 23, 2010. Today Ira underwent a second attempt to collect stem cells, but the volume collected was not sufficient this time too. Tomorrow the procedure will be continued.
Ira feels unwell. She got a new tumor in her leg and she will undergo x-ray and ultrasound tomorrow.
Ira's family is in a financial catastrophe. Ira's mom cannot work at this time, and they have no one else to rely on. It is also getting cold in St. Petersburg, and Ira and her mom do not have any warm clothes with them. Ira can barely walk, and she wears snickers that are too small for her.

Update as of August 25, 2010. Finally, sufficient volume of stem cells was collected. However, autologous transplantation cannot be performed at this time. An x-ray and ultrasound tests showed that a lump on Ira’s leg is a neoplasm, about 2 cm in diameter.
Ira is being referred back to Oncology Research Institute for more tests and establishing further treatment.

Update as of September 2, 2010. Today Ira underwent surgery at Oncology Research Institute: she already had three tumors.

Update as of September 28, 2010. Next week Ira is planned to have a surgery to remove lesions in her lung. She is now at home resting.

Update as of October 7, 2010. The surgery was postponed to October 12th. Ira and her mom will come to St. Petersburg on October 10th. An x-ray from this week showed a small growth of the lung lesion.

Update as of October 18, 2010. It was decided two administer two cycles of chemotherapy prior to Ira's surgery. Today she started the first 14-day cycle. She also had an ultrasound and an x-ray tests that showed no tumors in her leg and a stable lesion in her lung. She is planned to undergo CT scan tomorrow.

Update as of November 3, 2010. Ira successfully finished a cycle of chemotherapy and was discharged home for recovery.

Update as of November 23, 2010. On November 19th Ira started the second chemotherapy cycle. After the first one, there was no significant change, based on CT scan results. Ira tolerates this chemotherapy rather well.

Update as of December 16, 2010. Tests are rescheduled for December 27-28.

Update as of December 29, 2010. Ira had examinations. Everything is clear in her leg. However, two 4 mm lesions were found in her lung. We are hoping for a February consultation at MD Anderson Cancer Center in the USA. Ira's mother now has to pay for all tests at Petrov Oncology Center by herself, this time the total was 8000 rubles.

Update as of January 25, 2011. Ira is expected at MD Andersen Cancer Center on January 31. The consultation was paid for by Advita Fund USA. Ira's visa is being processed. We are very grateful to Singapore Airlines for a discount on roundtrip air tickets from Moscow to Houston.

Ira incurred the following expenses related to the trip:
- 43,000 rubles - air tickets,
- 18,000 rubles - PET imaging,
- 12,500 rubles - visas and document preparation,
- two train tickets from St. Petersburg to Moscow,
- medical insurance,
- minimum of $1,000 for living expenses.

Advita Fund USA will cover Ira's lodging while she and her mom are in Houston. We will be very grateful for your help!

Update as of February 23, 2011. Ira and her mom returned from the US with the new hopes and clear treatment recommendations. First, Ira needs to have surgery on her lung to remove two lesions. Then, based on histology results, undergo chemotherapy with certain medications. Now we need to find a hospital where Ira can be treated.
Pediatric Unit of Oncology Research Institute no longer plans to treat Ira since she turned 18 already. She may be treated at the Adult Unit.

Update as of March 17, 2011 On March 21st Ira is planned to be hospitalized at the adult unit of Oncology Research Institute for surgery on her lung. Since Ira was moved to adult unit, where her mom cannot stay, she would like to rent an apartment near the hospital for at least a month. Unfortunately, all the apartments rented by Advita fund are currently full. We will be grateful for any help with apartment rentals.

Update as of March 31, 2011 Ira has a new tumor on her leg, in the same region as before. This is the 4th relapse. Surgery on Ira's lung has not taken place yet. Possibility of combined surgery on Ira's lung and leg is being discussed. Ira and her mom still need help with renting a place to stay nearby.

Update as of April 5, 2011 Combined surgery, on Ira's leg and lung, is planned for April 6.

Update as of April 6, 2011 The surgery lasted 4.5 hours and was successful. Ira is in intensive care unit. She is recovering.

Update as of April 12, 2011. Ira was transferred to a shared room for 6 patients. The doctors have not yet removed a shunt installed in her lung, as she is still accumulating fluids. Ira's mom has been living at the unit for six days and sleeping on a chair by her daughter.

Update as of April 18, 2011 Ira feels better. She can already walk. Shunt was removed and swelling is gone. On Wednesday her stitches will be removed and on Friday she will be discharged. After histology results are ready, further treatment will be planned.

Update as of May 18, 2011 Ira and her mom went to Blokhin Russian Oncology Center in Moscow for a consultation with prof. Machak, osteosarcoma specialist. Ira was prescribed therapy with Peg-Intron and Zometa. It will have to last 1.5-3 years and will cost 55,000 rubles. Please help Ira!
She also needs to undergo radiation therapy at Oncology Cancer Research Institute. The therapy will start as soon as a treatment quota is received.

Update as of May 25, 2011. At the end of this week, Ira is planned to start radiation therapy. It will be done in outpatient setting and will last close to two months. Ira and her mom need help with renting a place to stay during that time near Pesochnoe or Ozerki.

Update as of June 3, 2011. Ira completed 2 sessions of radiation therapy. A full course will last 2 months, and a total dose will be 105 Gy. Ira was hospitalized at Radiation Therapy unit as the doctors want to monitor her at least at the start of therapy. Her mom was able to rent an apartment near Ozerki.

Update as of July 13, 2011. Ira completed radiation therapy and returned home to Novgorod. The local doctors are ready to monitor Irina and provide her with immunotherapy prescribed by Prof. Machak. She will receive medications for free. Today Ira had the first injections of Zometa and interferon alfa2. In 4-5 weeks Irina will return for Oncology Research Institute for control tests.

Update as of August 13, 2011. Ira is still in Novgorod where she is undergoing immunotherapy. Zometa is not currently available in Novgorod and it is not known when it will be there. Ira's family may need to buy it. Ira has difficult time tolerating interferon alfa 2 - she has fever, temperature changes, bone aches, fatigue and deep depression. We hope that with time these side effects will subside.

Update as of October 5, 2011. Tomorrow Irina is coming to St. Petersburg for a follow-up examination. The results of the examination done in Novgorod show that everything is fine.
Zometa is still unavailable in Novgorod. Irina is still having the same reaction to the Russian interferon so it will probably have to be substituted with the imported Pegintron which we will have to buy ourselves.

Update as of October 22, 2011. Based on scheduled tests, all is well. The next examination is scheduled for January 2012. Ira was prescribed a pack of Zometa and 4 packs of Peg-Intron monthly for 3 years. She cannot receive these medications for free.

Update as of December 14, 2011:. Ira is continuing Peg-Intron and Zometa therapy (both medications are purchased by AdVita fund). She feels well and had adjusted to Peg-Intron. She has some pain in her leg.

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