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Hello!
I'm Olga. I am 24 years old. I got sick 5 years ago when I was 19 and was a second year student at University. My first symptoms appeared even before that, at my last year in high school. Then already I was not feeling well and my back was hurting. I went to different doctors with my back pains – from orthopedic specialist to a cardiologist who checked my heart - but none of them was able to help me. When I was 19, the pain got worse and I could not live a day without taking painkillers. However, none of the medical tests and consultations explained the reason. Meanwhile, my illness was progressing. My legs got weak. I was hospitalized at neurological unit at the hospital. While I was undergoing more tests, I completely lost feeling in my legs due to severe low paraplegia and paraparesis. I was immediately transferred to neurosurgery unit and the doctors started to prepare me for surgery so they could see what was wrong with me. The diagnosis was still not determined. Just a few days before my surgery, MRI scan was done and it showed an enormous mediastinal tumor, which was squeezing my spinal cord. Then I was transferred to Chelyabinsk Regional Ontological Hospital. After the tumor biopsy I was diagnosed with stage 4B Hodgkin's disease. After combined radiation therapy and chemotherapy I achieved complete remission.
As soon as I could stand on my feet, I continued my studies at the university to make sure I don't skip a year. At first it was difficult as my leg muscles were atrophied and I could not walk by myself, so I relied on my parents to help me move around. But everything returned to normal quite quickly.
After a year and a half of remission, the illness recurred. For a year, I was administered different chemotherapy courses, but there was not dynamic and my treatment was stopped. After that my disease was stable. All that time I continued my studies.
A year later, my disease started to progress. My doctors could not offer anything apart from continuing chemotherapy treatment. Instead, I have decided to go to Moscow to get second opinion from a well-known specialist in my type of cancer.
Now I need stem cell autotransplantation. The procedure is planned for the end of June. I went a long way to get to this point: I've had surgery to remove my spleen, four courses of second-line chemotherapy and made several trips to Moscow for medical consultations and PET imaging. I was paying for everything by myself and my friends also helped me. Now I also anticipate significant expenses: for medicines, my mom's stay in Moscow, and control tests. This is why I am asking AdVita fund for help.
As of now, stem cell autotransplantation is my only chance to get well and live my life to the fullest.

Olga Vladimirovna Shmygleva

Update as of June 23, 2009. The situation was clarified only today, just a couple of hours ago. In short, I received a quota and on July 1 I will be hospitalized at Pirogov clinic in Moscow for autotransplantation.
For now, I have decided to fly there on my own (without anyone accompanying me). If necessary, I will ask one of my friends or family members to join me. For now, help is not needed.
Olga

Update as of July 7, 2009. Olga was hospitalized at Pirogov Clinic on July 2, 2009. She was examined for free, under the quota.
On July 5, she started receiving stimulating injections. On July 10th stem cell collection should take place, followed by high-dosage chemotherapy and autotransplantation.
As of today, based on test results, Olga's condition is unchanged (compared to beginning of June).
Sergei, Olga's friend

Update as of July 11, 2009. Today Olga started chemotherapy under BEAM protocol. The doctors collected only 1,000,000 cells for transplantation (the norm is 2,000,000), and the decision was made to reduce the medication dosage by 20%. Transplantation is scheduled for July 17.
Sergei, Olga's friend

Update as of July 14, 2009. Olya will need blood transfusions. We will be very grateful to donors of blood type I(-) and II(-).
Sergei, Olga's friend

Update as of July 26, 2009. I tolerated chemotherapy and transplantation very well, without complications. My temperature was always normal. Blood pressure was a little low sometimes, but close to normal. My heart had no changes. There was and still is no stomatitis! There were no infections too! Right after transplantation, my stool was liquid for a couple of days, and then went back to normal - it was also expected for this procedure! All this time I eat by myself, as my appetite is very good. My friends (and almost strangers) help me with bringing me home-cooked meals that were allowed by the doctors.
The blood counts, of course, plummeted, but not to zero (minimal counts are: hemoglobin 80, leukocytes - 0.1, platelets - 11). As of yesterday, the blood counts started rising already - all, except for platelets. Today I received thrombocyte mass transfusion - it was free, from the blood transfusion station.
I feel very well! I do not lose weight, even gained some. After transplantation I was a little fatigued, but with every day I feel more and more strength.
Overall, I tolerated transplantation very well. I thought I would feel much worse, but my body reacted very calmly.
All the medications and thrombocyte mass were provided on the basis of quota, I did not have to pay for anything else.
On Friday, July 31, or on Monday, August 3, I already will be discharged! In three months, I will have to go back to Moscow for control tests (PET, CT scan of whole body with contrast agent) - this is the only way to evaluate the effectiveness of treatment. Please help me with paying for those tests in November.
These are my great news!!!
Olga

Update as of August 6, 2009. Yesterday, on August 5th, I was discharged. Tomorrow I will fly home to Chelyabinsk. I was discharged with normal blood counts (hemoglobin - 92, thrombocytes - 990, leukocytes - 4.5). I never had any complications.
Based on my discharge summary, the chemotherapy drugs dosage was reduced by 20%, and the doctors collected 900,000 stem cells.
Olga

Update as of October 11, 2009. On October 27th I will fly to Moscow for scheduled tests (3 months after transplantation). The plan will be as follows: on the first day, October 27th, I will have whole body CT scan with contrast agent. If CT scan shows anything abnormal, and the doctors recommend it, I will go for PET imaging the next day, October 28th.
If CT scan produces good results, then PET will be canceled. I will have CT scan done at Pirogov clinic, so I will be able to bring results to my treating doctor right away.
I can afford to pay for the tickets and CT scan, but I will be very grateful for your help in case I need PET imaging.
I signed up for it at Clinical hospital at 1st Presidential Administration. The whole body PET costs 15,000 rubles.
I am really hoping that PET will not be necessary, and CT scan shows good results. On the night of October 28th I will already fly back home, regardless of the results.
In general, I am doing great. I feel well and have lots of energy. I work every day, from home. Recently I caught a cold from my brother, but I am already well now.
While the weather was warm, I went out for walks. Now I try to not leave the house unless I have to. Aside from work, I take care of my cats (Don Sphinxes) and grow flowers, as hobbies.
Olga

Update as of October 30, 2009. The CT scan showed that many lymph nodes survived the high-dosage chemotherapy and transplantation. However, there is no negative dynamic compared to May 2009.
PET imaging showed numerous active areas in lungs (which I never had before), a lesion in paraaortal lymph node, and another lesion in a lymph node in the fatty tissue in the projection of hip bone.
I went for a consultation with hematologists in Pirogov hospital. They came to conclusion that transplantation was not effective. The recommendation was to track the dynamic of the active areas (on CT scans) and if negative dynamic is present, go for two courses of GEMOX protocol (Gemzar and Oxaliplatin).
If the chemotherapy works, then it should be extended to 6 courses. If not, then I should be transferred to palliative care.
This is my unfortunate news. I am going to start looking for clinical trials in the US and Europe, track my dynamic and keep you informed.
Mecical report: page 1, page 2, page 3.
Olga

Update as of January 13, 2010. Consultations of Russian and Western doctors showed that my tumor is currently resistant to chemotherapy that I was receiving (based on CT scan results).
All that Russian doctors are offering me is palliative chemotherapy, which will not have therapeutic effect. At the same time, I was told that this kind of treatment is practically senseless and will only "tire out" my body.
While my condition is rather good and the blood counts stay high, I need to try to get into a clinical trial for my disease. Unfortunately, there are no clinical trials for my diagnosis in Russia. At this time, I am staying in touch with several institutes in Italy and the US.
The clinical trials in these clinics are specifically for lymphomas. They are trying a new treatment method, radioimmunotherapy. The first phase of the trials was completed. In the US, the first phase produced the following results: of 9 patients with Hodgkin's lymphoma, 2 achieved complete remission, 2 - partial remission, 4 - stable disease and one patient progressed.
In Italy, two patients were enrolled in the first phase and both achieved partial remission. Now the second phase of the trial is open. These trials are also a good match because they are free. I would only need to pay for the travel expenses and visas, as well as lodging outside of the hospital.
Also, the treatment is very short-term and it is possible to go home between the injections of the medication. For example, in Italy, all treatment consists of 2 injections: at first, a "cold" shot followed by 6-8 week break. Then a patient is tested, and if the results are good, a patient receives a second, "hot" injection. After a few weeks at the hospital, a patient can go home.
I really want to get to one of these trials, because palliation is a road to nowhere.
I am now in discussions with the clinics. Please help me with paying for the travel expenses.
Olga

Update as of January 24, 2010. Together with Marina, president of Advita Fund USA, we are looking for clinical trials for Hodgkin's disease, write letters, and forward medical documentation and test results. Unfortunately, one of the preferred clinical trials in the US wrote that they got several local applicants who will be given priority for enrollment. And I do not have time to wait for the opening for me.
Another interesting clinical trial in Italy had closed. The first phase of the test was with a medication that produced good results. However, the second phase was using a different medication, and it was not effective, so the second phase of the trial was closed. The plan is to restart second phase with the first medication after 6-8 months. This too will require time that I do not have.
We are now communicating with a doctor in charge of a trial in the UK, as well as considering several other trials in the US. The priority now are the trials that are free or require partial payment. The clinical trials conducted by private hospitals may be very expensive.
I also got in touch with my former doctor. She now lives in Israel and promised to see what is underway there.
Just in case, if I have to wait several months, hematologists from Hematology Research Center in Moscow agreed to review my documents and come up with effective palliative chemotherapy protocol.
This are my results so far.
Olga

Update as of February 8, 2010. More preliminary results of correspondence with clinics:

- I received a response from New York. At the end of February they are waiting for me at their clinic for a clinical trial of belinostat. It was created originally for t-cell lymphoma, but the first phase of clinical trial had three patients with Hodgkin's disease. Of them, one patient had tumor shrinkage by over 40% and others stayed stable. This clinical trial will be fully paid by the sponsor. Also, Advita Fund USA has several volunteers in the area who could provide me with support. The therapy is in pill form. However, so far the clinical trial has not shown remissions in Hodgkin's disease.

- With the clinic in Italy, there was some confusion, as they waited for my response and I waited for theirs. Some time ago they asked me to get a confirmation from my doctor that I have disease progression and chemotherapy is not helping me, and asked the doctor describe my condition. My doctor wrote by hand on a small piece of paper, which was not comprehensive enough. Tomorrow I will get something more detailed.

- At Mayo clinic, they are still looking into my documents and have not yet made a decision.

- A hospital in Denver billed me for $35,000 for six courses of chemotherapy, including two CT scans.

I am starting to feel a little worse. At night, I have more frequent and lengthy pains in my waist and sacroiliac joint. The pain is tolerable for now.
Immunohistological test results from St. Petersburg will be ready on Wednesday.
I have not made a final decision yet, but I am inclined to go to Italy.

Olga

Update as of February 13, 2010. Based on the immunohistochemistry test results, I am not eligible for clinical trials in the UK and Texas. Therefore, the trial in Italy is the best option for me currently. We sent them all the required documentation - clinical summaries, test results, doctor's conclusion and my agreement to come for the testing.
We are waiting for the invitation. I feel well, except for a slight cold, so I stay at home.

Olga

Update as of March 4, 2010. Since the discussions with the foreign clinics that are offering clinical trials are taking some time, I have decided to go to Moscow for a consultation with Professor Pivnik. I need to understand whether I need to start treatment in the near future or not. I already purchased the tickets for the next Tuesday and will return the same day.
Olga

Update as of March 10, 2010. Olga went for a consultation with several hematologists in Moscow who confirmed the need for her to enroll in clinical trials. They also believe Olga is in a very good condition and she can go without chemotherapy for at least six months.
Olga also received recommendations in case her condition worsens. They also agreed to consult Olga over the phone or internet, if necessary. Therefore, the trip to Moscow was justified.
A few days ago, Olga's documents were forwarded for another clinical trial that produced very good results (70% of patients had objective response). We are waiting for their response.
Olga is now back at home.

Update as of March 19, 2010. I received an invitation from Italy! I will now start applying for a visa. I plan to go to Italy in the beginning of April.
Olga

Update as of March 23, 2010. Today I spent the whole day working on my documents. At the end, the visa-related costs totaled 17,267 rubles, which is twice as much as I expected. The problem is that the hospital will not provide lodging; therefore, I had to book a hotel.
The amount includes everything: visa fee, insurance, hotel reservation and travel agency fee. I reserved the flight Chelyabinsk - Napoli for April 6th and return flight for July 6th. The cost of the roundtrip ticket is about 35,000 rubles.
This is the invitation from Italy.
Olga

Update as of April 3, 2010. The clinic from Italy sent me a letter asking me to arrive a week later, on April 12th, so I plan to travel there on April 10th.
I started having health issues:

- Rash (it was not allergy, apparently)
- Heightened temperature (37.2 around the clock, and can get higher in the evenings),
- Nightly sweating,
- Fatigue (no energy to get off the couch in the morning),
- Going out results in low blood pressure (I get hot flashes right away, get nauseous, feel blacked out, get pale, hear buzz in my ears, and have severe fatigue),
- Weight loss,
- Pains in various areas,
- I look terrible – like a sick person,
- my nails and hair do not grow and my eyelashes fell out.

Last week I spent at home in my bed. Since yesterday I started hormonal steroids (Dexamethasone), on the advice of a doctor from Moscow. I'll take 40 mg for three days – it's a large dose. I can’t stop it abruptly, because my pancreas could suffer, so I will lower the dose gradually, and in 3-4 days I will get off the medication.
I also got dental problems: first, a wisdom tooth and related issues, and secondly – filling defect. I got an appointment scheduled for April 9th, so I am hoping that I will be treated well right away, because the next day I will already leave.
Olga

Update as of April 13, 2010. Olga's flight went well. She was met at the airport. On Monday she was hospitalized. She had a blood test and was installed a catheter.
Today Olga had PET imaging, and another study is scheduled for Friday. She practically has to use sign language to communicate as there is no translator at the hospital.
Sergei, Olga's friend

Update as of April 20, 2010. I am in Italy now. I got there in time. The flight was good. It was tiring to wait for my connecting flights at the airports - just in Rome I had 8 hours between the flights. There were little mishaps along the way. But in general all went well. I was met at the airport by Valeria and Lena (her mom), and Valeria's boyfriend, Gian Luca.
The first week I was at the hospital. It does not have internet connection. I had various tests and on Wednesday, April 14th, I had a diagnostic injection with a small dose. The results indicated that the lesions accumulate contrast, which indicates a high probability that treatment will help me. It means that it will be effective, but it is not clear whether it will kill all tumors. I am hoping that all of them will be gone!
The therapeutic dose will be administered on April 27th and the doctor said I will be able to go home on May 3.
However, in 40 days I will have to return for control tests - PET and scintigraphy. But it will be more affordable for me to fly back and forth (the tickets cost 400 euros) than to stay here for 40 days.
I will also need to go for blood tests during that period. If I stay in Italy I will have to go to the clinic daily, which is rather expensive. At home, I will be able to email my blood test results to the doctor.
Most importantly: yesterday I noticed that I do not have B-symptoms anymore! I do not feel itchy, don't get sweaty, and do not have high temperature or fatigue. Maybe it is due to a climate, or... but I do not want to rush to conclusions!
I like Italy - it is very beautiful, very green and the air is clean.
Olga

Update as of May 12, 2010. I am already at home! I feel well. In the morning I am a little fatigued, but after breakfast it goes away.
My flight from Italy went well. At Sheremetyevo airport radiation counters went off and I was detained. Fortunately, I had a letter from my doctor with me that said I was returning from treatment, so I was let go quickly after my information was recorded.
At home I have lots of work to do. On Friday I will go to the local oncologists because Dr. Aloj insisted that I keep in touch with them, as my blood counts could drop. Also I will have a blood test the same day. Next week I will go for the blood test on Thursday so that the results are ready before the weekend. And I need to do something about my visa because it will expire on July 9.
Olga

Update as of May 28, 2010. Yesterday I had the first CT scan, a month after the therapeutic injection. The results are amazing! Almost all the lesions are gone, except for two lymph nodes in abdomen, up to 18 mm. I am flying to Italy for the next injection on June 8th.
Olga

Update as of July 10, 2010. PET scan as of July 6th showed no change compared to PET from a month ago. This is a great result and the doctors are happy with it. The next control tests are scheduled for September 15-30th.
Olga

Update as of September 22, 2010. On Saturday I returned from the control test #3. The PET results show that an old lymph node in lungs started to grow slowly, but surely. It was decided that I need a second injection. Turned out, this was expected.
Now I am being prepared for possible 6 injections. In October I will have to return for two weeks for treatment (a week in the hospital and a week outside). Right after my arrival I will bone marrow trepanobiopsy to determine remaining reserves. Then after three more weeks I will return to Italy again, as my platelet count is expected to drop and the doctors want to control it. Plus I will have the first control PET.
The second trip will last 2-4 weeks, and I will be an outpatient (I will be hospitalized if necessary). Then I will have more control PETs to catch possible growth.
In practice, every injection is more effective than previous, and partial remission lasts longer, but bone marrow is also affected more. My first partial remission lasted close to 5 months, and I hope the following remissions will last longer. I now feel very well and have no symptoms of disease.
I am not upset about the results. I will be very grateful for any help. Just the air tickets to Moscow and Naploi (and back) cost close to 30,000 rubles.
Olga

Update as of October 24, 2010. I am doing well and feel great. I even started taking professional swimming classes at the pool. During a 45-minute class I can tolerate as much effort as healthy young people. This is no comparison to how I felt before I went to Italy... the difference is like the distance between earth and sky!
I am now waiting for the bone marrow results and then I will get in touch with the clinic in Italy to decide when to travel there again.
Olga

Update as of December 12, 2010. I am doing great! Once I came back to Italy, I had PET scan. There is no significant change, and a lesion that started to show up in September is still lighting up. So a second therapeutic injection was made to destroy the rest of the disease.
I had an injection on December 6th. This week I am already flying back. Then it is going to be the same as the last time: drop of blood counts, then the first control CT scan at home, and a control PET in Italy.
My visa will expire in early March, so most likely I will fly for control tests before March.
Olga

Update as of January 10, 2011. My blood counts are currently dropping, as expected. As soon as counts recover, I will have to undergo whole body CT scan with contrast. And on February 21 I am expected back in Napoli for control tests.
Olga

Update as of February 25, 2011. I returned from Napoli. PET showed that the 2nd injection resulted in minimal improvement. The small lesions are gone, but two old lesions remain: one is a big lesion in my lung, and another is a small lesion near pelvic bone.
The doctors insist on the 3rd injection. However, since I am still recovering from the 2nd injection, it was decided that I will come back to Napoli in April for a couple of days for bone marrow biopsy and PET. Based on these two test results, it will be decided whether the 3rd injection is needed and if so, when.
Olga

Update as of May 11, 2011. Bone marrow biopsy showed that my bone marrow is cancer free. I am expected for the third injection at the end of June. At first, I will undergo PET imaging to evaluate changes, if any, in my condition, and then I will be hospitalized for the injection. I will spend four days at the hospital and then I will be able to fly home.
Olga

Update as of May 25, 2011. I would like to thanks Grant Life fund for help with using frequent flyer miles for a portion of my tickets! I am also very grateful to Svetlana for paying in full for my air tickets for the next trip!
Olga

Update as of June 22, 2011. Today Olya is flying to Italy for the third injection of the medication.

Update as of July 13, 2011. I returned from Italy after the 3rd cycle of therapy. In a month, I will need to return for control tests. During current trip, I was found to have hyperactive thyroid function caused by radioimmunotherapy and was prescribed a medication.

Update as of September 18, 2011. The clinical trial in Italy is over. Patients are being taken off the study and Olga is looking for new treatment. Currently, she has disease progression.

Update as of October 4, 2011. I have recently taken park in a "Before & After" type of project… hoping there will be responses… but there are none. Here are the articles about me with pictures.
Olga

Update as of November 28, 2011. I completed the first cycle under the recommended regimen (bendamustine + revlimid). I had many side effects from revlimid and for now, I will continue treatment with bendamustine only. The next cycle will start on December 7. In general, I feel OK, except for weight loss, low blood pressure and low hemoglobin. I am continuing search for a clinical trial.
Olga

Update as of January 3, 2012. After two cycles of therapy with bendamustine, I had control PET that showed that compared to September study I have improvement, particularly in liver and lungs: the lesions are smaller and take up less contrast. For this reason, the doctors believe that the therapy is effective even though the disease is still active. The plan is to administer 6 cycles of bendamustine locally.
Olga

Update as of January 6, 2012. Yesterday I finished the 3rd cycle of bendamustine. I don't feel very well.
Olga

Update as of February 8, 2012. It was decided to postpone chemotherapy for some time, as after the last cycle my condition worsened drastically due to respiratory infection (pneumonia is suspected) and herpes infection.
The whole January I had temperature near 39C, fatigue, shortness of breath and tachycardia - moderately serious condition. My blood tests were showing high levels of bacterial infection (high ESR).
I underwent therapy with 3 antibiotics. I now feel better and can move around apartment. I still need to go for abdominal ultrasound and heart ECHO and get tested for bacterial infection. I hope to resume bendamustine therapy in March.
Olga

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