Posts Tagged ‘typing’

UPDATE 26.08

August 26th, 2010 Comments off
After a difficult period of time, here comes another one. I kept quiet for the last few days, some of you probably noticed that I didn’t even reply to your emails.
What seemed to be a cold, maybe an infection kept me in bed for the last few days with fever, fatigue and a general bad condition.
Now it’s a little bit better, but it’s still not over yet.
And I have news again. Not good news…Because the result from the Pet-CT is not good, showing that the disease is progressing, they’ve delayed the transplant again. Another 6 to 8 weeks, this time being used for 2 chemotherapy rounds.Chemotherapy starts on  Monday, because  all of the traces of the  infection I had need to be gone in order to avoid any unnecessary complications due to my compromised immune system.
Why are they insisting that the disease shouldn’t be in progression when I do the transplant? Well, because in order for the cells to destroy it, the disease should be in a weak, non-active state. They need somehow to temporary stop the disease with the cumulative effect of the normally dosed chemotherapy and the high dose chemotherapy that it’s being administered in order to destroy the marrow, and in my case also with total body iradiation.
And because I still don’t have stem cells from an adult donor, it is impossible to keep the disease under control long enough in order to have real chances of success.
Stem cells collected from umbilical cord start to do their job  in 4 to even 6 weeks after I receive them, calculated from the moment of the transplant, (which is performed immediately after the high dose chemotherapy), and usually my disease starts advancing again after 2 maximum 3 weeks after every chemotherapy protocol we’ve tried so far.  And because of that, we are trying to find another protocol… Again..
Eventhough it sounds weird, there is a good part in all of this: we can keep looking for a donor. So, the testing for finding a matching donor continues. You can find all details in the post below. Same hourly schedule, same days and you will be also registered in the Registry of Stem Cell Donors.
Same info is required from you as before, I will do the appointments ,based on the emails I’ll receive from you on .
Thank you!
I’m still waiting for your emails and I want to apologize for my previous silent days. 
Talk to you soon!

Change of plans, details and words of appreciation

August 16th, 2010 Comments off
I will start with the change of plans. Last week I had to do all the medical examinations required before the transplant, except for the PET-CT , which shows how my disease is behaving since  the last checkup of this kind until now,  after the last chemotherapy session.
Most of the results are perfect, there are no visible signs that the treatment from the last two years (2 years on 29 august , damn it !) put its toll on any internal organs. My heart looks exceptional and it functions even better then it looks.
They also performed a CT examination in order to plan the total body irradiation (TBI), that I will have to receive before the transplant, combined with high dose of chemotherapy, in order to destroy and remove my bone marrow and to make room for the new cells that will save my life.
I don’t know yet what kind of cells they will use. The stem cells that were harvested from umbilical cord, cells that are already stored for me, which, as I told you before, are not the best option for me, or the cells that could be harvested from one of you.
Until today the situation stands as follows:
– We have all the results from Vienna. None of the 44 persons that were tested are a match.
– Synevo tested 79 persons. I have 55 results. None compatible.
– At the Hematologic Institute in Bucharest 148 persons were tested. I have 51 results. Nothing.
Tests will continue at the Institute.
The testing continues because at the meeting with the transplant team coordinator they told me my hospitalization was delayed until the  2nd of September.  Right on my birthday! When he saw me laughing, he asked me, bedazzled why, , and I told him. He offered to move the day further in the calendar, but I insisted to get in as scheduled because it has to be a sign, although I have never believed in such things.
Where do I intend to get with this? Considering the fact that now I have earned another week and a half  and because the tests at the Institute, being done using a different method compared to Synevo, are showing after only a couple of days per test, the tests can continue for me till Friday 27.08.2010 . So I’m still waiting for your emails.
Also, please, resend this message to friends, colleagues, relatives, make it public on blogs or sites that you might be administering . If they won’t help me they will help for sure some other desperate peole in need of  stem cell transplant.
After that date, we will start a large campaign, together with the Health Ministry and the National Stem Cell Donor Registry, in order to succeed puting the registry on its feet, so that no other person will have to go through what I have experienced.  At least regarding the part of donor  search.
Why can’t they search the International Registry, like I did? It’s simple:
– The costs are between 30 000 and 50 000 euros, depending on the transplant center and the additional tests needed during the search process.
– the search is performed through the transplant center  where the procedure will take place and it’s useless to mention that  you won’t get into the transplant waiting list unless you were treated for a while in their medical system or unless you have your file approved by the Health Ministry. 
– an eloquent  example:  I don’t have strange genes but strange combinations between the genes. This was told by specialists, based on international statistics, statistics that failed to include a representative number of Romanians, because we are not tested, nor registered in any registry,etc.
But, surprise! From the first 15 results received from Synevo , 2 persons showed up with one of my “ strange gene combinations”. So the statistics don’t fully apply to us. Which means we have chances of finding a donor among us.  That means we can save eachother’s lives.
Also, in general, patients with cancer don’t have my luck to function during treatment and they also don’t have the luck that I had with you.  Because of that, unfortunately, many Romanians who need a donor  – no matter how dark it sounds, this really happens – die running between the hospital, for the terrible specific treatment, the institutions allowed to offer financing in order to get treated outside the country and NGOs to help them get some money through fund raising campaigns, as an alternative solution. 
Although I am quite a skeptic, although I have moments when I think that nothing can be changed here, I strongly believe that we can do something so we won’t be condemned just because we are born and live in Romania.
With the risk of repeating myself, I want to thank everybody that went through the testing phase because even if some of you were afraid of the needle sting you understood how important your gesture is and you acted accordingly. You have my full gratitude for that!
I will repeat below all the informations you need in order to be able to decide, fully informed, if you want to do the testing or not, to get registered as a donor in the Registry, and maybe to SAVE A LIFE.
Although many of us were disappointed by our medical system, my opinion is that, with proper information, we can manage this situation and besides that, why not, try to change something when someone offers a helping hand? Why not do something? Why won’t we try to invest a small amount of trust in some good people that I personally got to know, when this minimal trust can save someone of us s life?. Because, believe me, this can happen to anyone!
We can do something and we have to start somewherein order to quote someone dear  to me !
I’m doing everything in my power, I can reassure you of that, but I need your help! I know that this will sound like a motivational speech, but it is very sincere: ONLY TOGETHER WE CAN DO THIS !
There are already 140 registered people in the Romanian Stem Cells Donor Registry (some of the people that know me had done the testing only for my benefit, refusing to get registered in the registry), and if you add my sister, 141. We will take the signed forms and her test results to the Hematologic Institute in order to register her into the registry by the end of this week.  We’ve reached this number in only 2 weeks, considering the fact that the institute has the theoretically testing limit of 15 people per day, during 2 hours per day, from Monday to Friday.
Considering this, I want to call out for any specialized medical personnel that wants to help, as a volunteer, to draw blood samples from anyone that is interested in joining the registry, in order to increase the number of people tested per day.  For this I’m waiting for your e-mails. Specific hours and days when you could help will be discussed.  Nothing is established. ?????
We have the full support of the Austrian Stem Cells Donor Registry. They want to help us have our own functional registry, interconnected with international organisations and accredited accordingly to international standards. But for this we need to start it up!
Tomorrow I have a new appointment, this time with the director of the Austrian registry.
If you have any ideas or if you are willing to help as a volunteer, please contact me !
I will stop here and I will paste some useful information from the last blog post below, so you can track the info easier :
HLA Test are ongoing! Each day, Monday to Friday , for now only between 12:00 and 14:00 , in Bucharest, at
The National Institute of Transfusional Hematology  “Prof DR. C. T. Nicolau” – National HLA laboratory – EFI certified center
On 2-8 C. Caracas Street, sector 1 , floor 4, room 13, under the coordination of doctor Dutescu Irina Monica .
As I said before, tests are done only with the registration in the Romanian Stem Cells Donor Registry.
You won’t be able to register the registry if:-
– You had hepatitis B or C
– You have hepatitis A now. If you had it in the past and it is cured, there is no problem.
– You have HIV/AIDS
– You have syphilis or any other sexually transmitted disease 
– You have  recently had an accident or underwent a surgery that affected your flat bones(hips, sternum or spine) because damages to those types of bones can affect the bone marrow, where the stem cells are produced. 
Some of the autoimmune diseases can represent an impediment for the testing and for joining the registry.
Details about the testing procedure and the stem cell harvesting, in case you are compatible, chances that this will happen are 1/80 000, you will find here :
A map of the area where the testing is taking place you can find here:
In order to read how the search started and why it’s so necessary, follow the link below:
The accounts for receiving donations or sponsorships, in order to supplement the limited stocks of reagents, needed for the testing, are mentioned here :
You are allowed to eat and drink before the test.
Blood group and RH factor do not have any relevance.
It is necessary that those among you that wish to help, bybeing tested and, in the happy case that you will prove to be compatible, to donate the stem cells, will send to my email address the necessary infos ( name, CNP – identification number, email address, phone number), and also mention the days when you will be able to show up for the test. We will centralize all the data received and we will send each one of you a confirmation SMS.
You also need to understand that in order to get tested you have to agree to be registered into the National Stem Cell Donor Registry.


August 15th, 2010 Comments off
Details on how to join the Stem Cell Donor Registry
  1. Stage 1
First, by going to the testing center, you will have to solicitate informations about what it takes to register into the stem cell donor registry, about the principles of stem cell donation, about the rights you have and about the stages you will go through. Also you will need to be informed about the stem cell harvesting procedure and you must take into consideration that, although you can change your mind any time, even after you signed the agreement form to join the registry, doing so when you are identified as a compatible donor for a patient that needs a stem cell transplantation means that there are big chances the patient will die,  ,  finding  a matching donor being extremely hard.
  1. Stage 2
Filling in the <agreement form and the medical questionnaire >
A. The agreement form
The agreement form contains fields where you have to fill in your personal data and by signing it :
1. You agree:
– To have a sample of your blood taken (same procedure as for any test that requires  blood sampling), in order to do the HLA typing – molecular-biology test that will determine the level of compatibility between the donor and the patient who will receive the stem cells, and also in order to have some tests that will determine if you suffer from any disease that would put the patient’s life or your life at risk.
– To join the National Stem Cell Donors Registry
– To remain registered into the registry, if possible, until the age of 60
 2.  You declare that you are aware of the fact that you can withdraw your consent , and as a result to  be deleted from the registry.
 3. You confirm that you were informed that:
– The donation will be voluntary, anonymous and there will be no financial rewards.
– The harvesting of the stem cells will be guided and watched over by a hematologist doctor from a specialized center   .
– You are not allowed to find out who is the patient that received your stem cells and vice versa, the patient can’t find out who is the donor
on very rare occasions, you might be asked to donate again, after a short period of time from the apheresis moment, for the same patient;
You will have to notify the registration center  any changes of your address, phone number, or significantly changes in your medical condition.
B. The medical questionnaire
Filing in the medical questionnaire helps evaluate, together with the virology tests, your medical condition at the moment of registration in order for the medical staff , in case you are compatible with a patient, to know about any particularities that could affect the harvesting process or to determine if any special measures are required during harvesting or during the transfer of the stem cells to the patient.
         3. Stage 3
Blood samples will be taken in order to perform the HLA typing and the virology  tests.
         4. Stage 4
Harvesting the stem cells
If you will be identified as a compatible donor for a patient in need of a stem cell transplant, a rare occurrence, (chances to be compatible with a patient are, according to statistics, 1/80 000 so some of donors are never asked to donate because of that), you will be contacted, you will be asked for your consent again, and you will be called in for a medical exam and blood tests in order to determine your health condition at that exact moment.
If you don’t suffer from any disease that would put your life or the life of the patient in danger, you will go through the process of marrow stimulation.  This will be done by injecting a substance called stimulation factor ( most frequently used is filgrastim, a substance that imitates the natural stimulation agent present in our bodies) that will determine the marrow to produce stem cells and then will determine those cells to migrate to the peripheral blood stream, in order for the apheresis to take place  ( the collection of the stem cells from the peripheral blood is called apheresis).
***Filgrastim is used based on a standardized protocol, its testing started in 1966; since then numerous clinical studies were performed, now its use is approved as a standard protocol in USA, Europe and Japan since 1991.
You can do the shots yourself after specialized training or somebody close to you can be trained to do them. Of course you have the choice to go to a medical center in order to receive the shots from specialized medical personnel.
Shots are administered during a couple of days, in the meantime  your blood will be tested periodically to determine if the number of the stem cells have reached the optimal number for performing the apheresis.
Some of the people receiving the stimulation factor accuse a mild bone pain, muscles pain, headaches, for which the doctor can prescribe painkillers.
The apheresis  procedure, which is similar to the blood donation procedure, has some particularities: it starts with placing a needle into the vein on each arm and then connecting the needles to the apheresis machine.
From one arm the blood goes out and through the  apheresis machine and returns through the needle in the other arm. During any moment of this procedure there is only a small amount of blood outside your body.
During the procedure you are monitored by specialized personnel.
You will be administered an anti-coagulant substance, in order to prevent blood clot during harvesting. You can also pay attention and request a replacement when the substance is almost depleted.
Also, you will be administered calcium, because the anti-coagulant is assimilated by bonding to the calcium molecules in the body and reducing the amount of calcium that is necessary to the organism, during the procedure.
 If the administered calcium dose is not enough, you will feel a mild numbness in your lips or nose, in which case you will need to tell the medical staff around you to tune up the dosage.
The apheresisprocedure takes between 3 and 5 hours.
The collection of the stem cells doesn’t  require hospitalization, when it’s done using the above procedure, most common case.
Before you leave the harvesting center, some routine tests will be performed on a blood sample taken just before the needles in your arms will be removed.
Regenerating the lost stem cells will be done by your body in a natural way with no side effects or symptoms.
In some very rare cases, the hematologist of the patient that will receive your stem cells could decide, based on the patient’s condition, to harvest the cells directly from the marrow.
The procedure, in these rare cases, will be done, if you agree with this type of harvesting, under general anesthesia in the operating room.   Harvesting is done by inserting a needle in one of the body’s large bones. Usually it’s the hip bone.
But I repeat, this procedure is chosen by the doctor only in rare cases, the preferred method is collecting the cells from the peripheral blood stream because it’s less invasive and it requires less recover time.
Some donor cell registries, from various countries, being formed long time ago when the procedure of harvesting stem cells from peripheral blood stream was not a standard, are still called Bone Marrow Donors Registry and the transplant was called bone marrow transplant.
Testing costs are supported by the National Registry of Donors and the costs for stem cell stimulation and harvesting are supported by the Health Ministry or, in special cases, by the patient or his insurance company.
What does finding a compatible stem cell donor means for the patient and his family? A new chance to live!
Although I never wanted to say it, this can happen to anyone, please believe me!
According to international statistics, in countries that have a stem cell registry, many of the cancer patients or any similar diseases, can get cured by doing the stem cell transplant.

List of people and details for the testing that will take place on 27.07.2010

July 26th, 2010 Comments off
Thank you very much for your feedback!
The following people will be tested tomorrow, TUESDAY, 27.07, 10:30 AM, BUCHAREST, at the Synevo laboratory on 1 Bibescu Voda street , apartment build 4, sector 4 – near Hotel Horoscop, according to the list that was attached to the contract signed today :
Dinu Liviu Marian

Dinu Laura Elena

Vlaicu Alexandru

Neagu Victor

Lisievici Andreea

Mihaela Popescu

Andreescu Violeta Margareta

Andreescu Cristina

Adrian Bir Barbuliceanu

Rosca Octavian Nicolae

Paraschiv Carmen

Necula Marius

Moianu Nicoleta Madalina

Anca Tudora Mihaela

Mirela Scaunasu

Irina Senarea

Popaene Daniela

Petra Narcisa

Cruceanu Bogdan

Costea Bogdan

Iulia Craiu

Gabriela Potop Irimia

Costea Angelica

Ilie Andra Roxana

Dinu Vlad Alexandru

Barbulescu Rocsana

Cechi Cristina Valentina

Lucian Oprea

Renata Holmes

Antonio Dumitrescu

Dana Vereanu

Andra Stefanescu

Anamaria Martin

Gogarla Tiberiu Andrei

Mihai Dobos
We have to mention that the 35 people limit was imposed on us, but they promised that today they will try to organize another testing session for Wednesday, with a new list of people that are willing to get tested.
In the meantime, people from the list above are expected to show up at the specified address on Monday at 10:30 am. Test tubes with each other’s name are already prepared. !
You can eat and drink before the test. It won’t affect the results.
For questions and other info, the following people will be at the laboratory to help you:
-Cristina Pelteacu, from Synevo
-Alina Popa, a friend of mine
They will make sure everything will be ok.
Tomorrow you will have to sign a consent form that says you agree to be tested and 2 test tubes with your blood samples will be collected.
I’m here to answer your questions at any time.
For Wednesday, the list is still open, I will get back to you when I’ll have more details.
You can’t imagine how much all of this means to me !
Thank you very much!

We are looking for a stem cell donor that could save my life

July 25th, 2010 Comments off
As some of you already know, I got to the point when I have to ask again for your help.
Let me inform you about the current situation.
I am scheduled for the transplant on 23 august 2010. Because we cannot wait any longer and because my disease cannot be controlled anymore. My sister was tested but the compatibility between us is only 50%, percent that excludes her as a donor, I wouldn’t survive a transplant with her cells.
So the doctors, after searching for more than one year through the international stem cell registries, advised me to start looking for a donor on my own, amongst Romanians. It seems that Romanians have better chances of finding a donor in the same geographic area.
I will try to explain to you what the testing is all about, but also the harvesting procedure of the stem cells, in case somebody will be found to be a compatible donor.  Because you need to know all the details before I will ask you for your help.
The test is named HLA typing (goggle for HLA Typing or Human Leukocyte Antigen)
When the testing should take place:Tuesday , 27th of july 2010, 10:30am
Why  now?Because the results are ready in two weeks (that’s the minimum technical required time with no administrative delays so I cannot have it sooner than 2 weeks). Only this way everything can be organized so that the blood samples will leave to the laboratory in Germany with the first and only specialized transport.
Why the hurry? Because on the  23rd of august I have to go through the transplant procedure, with or without an adult donor. I have already stem cells taken from 2 newborns, from the international stem cell database = 70000 E
Why is that not that best solution anymore?  Because in the case of a progressive disease (like mine), there are chances that after the transplant, when the immune system  is completely gone, I would need chemotherapy in order to stop the disease, in order to allow the stem cells to go towards the bone marrow, establish a base over there and eliminate  the cancer. The difference between stem cells taken from newborns and those taken from adults is that the adult ones are doing their job faster and they can bring back my immune system 2 weeks sooner. Assumed risk while doing the procedure with newborn stem cells – great, of decease….
Stage I
The name of the test is HLA typing . It’s a simple blood test procedure from the donor’s point of view. The complicated part is the one taking place in the laboratory because it’s a DNA analysis. It’s a test that is performed for any kind of transplant (organs, tissue or cells), in order to determine the level of compatibility between the donor and the patient.
For those who wish to find out more details about this test :
How is it done? They collect two blood test tubes. Same as for any blood tests. Nothing special. It’s just a sting.
After the blood samples are taken, from the people that want to help me, they will be sent for analysis at a laboratory in Germany that co-operates with the Synevo laboratories – the only ones I could find in Romania, that were able to do this kind of testing.
They will do a HLA A, B and DR typing, at 1140 E for each tested person. The costs are supported entirely by my family. 
Anyone can be tested , no matter of the blood type. Chances to find a compatible donor are extremely low, 1/80 000 for non-related donors, but if I want to save my life I have to try this, no matter the costs.
We decided to do the tests in these laboratories after many failed attempts to do something similar at the Romanian Stem Cell Registry that was formed last year. Becauseit’s not functional, they don’t have funds, they don’t have the necessary substances for the test, they don’t have… Please believe me that I’ve done everything that was possible. They promised they will try to do something. They don’t know for sure what.  And most important when. And because the results are ready in two weeks  the minimum technical required time with no administrative delays, and because we know how our country is , offering us no chance , I can’t afford to wait for an answer from the specialists that are on holidays right now.  So I will have to do it on my own.
The registry from Vienna already offered me a series of free tests, Blue Air and Bostina si asociatiiLaw Office help me organize the plane departures from Romania .Wehave already started the testing in Vienna. Many people are expressing their wish to help me and are asking for details . Useless to say how frustrating it is to see  that you are getting help outside the country border, from strangers, rather than the home country. Although they intensively mediatize any action that has been started and not finalized . I know that many of you will say “ we have our own registry, I saw it on TV, many people from the press and our ministry Bazac were tested….”. Some of you even went there to get tested for the registration protocol with the hope that you could save somebody’s life. You know what happened with your blood? They told me it is refrigerated in the location where the test took place and they are waiting to get money allocated so they would be able to do the actual test.  So , with all the good will of everyone that got registered , the blood is not yet tested, therefore   a search in our registry, which was denied anyway or at least delayed until the person responsible for that will get back from holidays, would be useless.  And in order to find that out, to realize you need to find other ways to save your life, you have to run to different places, make lots of phone calls and pull strings for couple of weeks. I contacted every center that was supposed to be affiliated to the Registry, I’ve tried everything.
The only thing left for me to do is taking care of the testing myself with all the expenses that come with that, the best way I can. Only one laboratory in Romania . Bottom line : I will sign the contract with Synevo on Monday morning ; on Tuesday , 27.07.2010 everyone who wants to help will be tested .
You cannot be tested if :
– You are a minor
– You had B or C hepatitis
-You currently have A hepatitis
– You have HIV/Aids
– You have any sexually transmitted disease
For everyone else, the only thing required is the desire to save my life. It will cost you only 1 hour of your time, a sting and the strong commitment that if I’ll be lucky enough to be compatible with any of you, you will agree to continue with stem cell donating procedure, that I will describe in the details below, with photos taken when they’ve harvested my own stem cells for my first transplant that extended my life. If you need any more details, you can contact me anytime. It’s important to keep in mind that if we get to donating stage , this will take place in Vienna, in one of the best hospitals in Europe, where I did the transplant myself, in very good conditions, costs being supported by my family and the help I received from you.  I do trust them and I would never ask anyone to do any medical procedure in Romania, based on my personal experience.
About the stem cells harvesting procedure
Trip to Vienna and accommodation on my expense.
A stimulation procedure will begin using an agent called Filgrastim. This substance will be administered using injections during a couple of days until there are enough stem cells to be harvested. . I did the shots myself. The shots are not painful…just plain shots.
This stimulation also makes the stem cells migrate to the peripheral blood stream, making this procedure much easier and less riskier compared to older procedures where the cells where collected directly from the marrow by performing  a surgery.
During the stimulation procedure, at certain intervals, blood samples will be taken from you , in order to determine if there are enough stem cells in order for the apheresis to start. When the number is optimal , the stimulation procedure stops and the apheresis  starts.
Collecting the stem cells is done by having two needles inserted in a vein of each arm . Those are connected to a collecting device, which uses acentrifuge,that collects and counts the stem cells. Blood goes back into the system through the other needle.
The procedure is not painful at all, just not very comfortable because it takes a few hours and during that time the donor has to stand still until there are enough stem cells collected.
If we manage to get to the phase where the collecting of the cells would be possible, which I hope we will, the risks are minimum, same as having an  infusion.
You are monitored during the whole procedure, and you will be administered calcium to replace the one you lose while having the anticoagulation substance in your blood ( needed for obvious reasons  – not to have your blood clotted in the collecting device)
I  had no problems during this procedure.
After collecting the cells you will be sent home . Your cells will be given to me and they will save my life. You won’t miss them because the ones you donate are fresh cells and you will still have the adult cells to protect you. And stem cells regenerate after only a  few days.
This procedure is frequently done in all the civilized countries, there are impressive statistics regarding how many human lives were saved per year using the stem cell transplant. And the risks of the procedure are not greater than those from a regular injection or infusion.
I hope I will be one of those saved by this type of transplant, I still believe in my chance and that’s why I’m asking for your help.
If you want to try save my life, and you are determined to go all the way with the procedure, please contact me at as soon as possible.
I need  list of persons ( name , address, personal numeric code, phone number, email – in order for them to label the test tubes and in order to be able to contact you), until early morning on Monday.
I repeat, tests are done on Monday, 27.07.2010, 10:30 am, Bucharest. The exact location will be announced on the blog on Monday morning. (It will be somewhere around PiataUnirii)
I can also get help from people who already took this test and have their results.
Also any kind of sponsorship is helpful!
To those in need,I’m posting my sister’s test results. She’s willing to save a life anytime.
Thank you!