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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 dinucristina8223@yahoo.com .
 
Thank you!
 
I’m still waiting for your emails and I want to apologize for my previous silent days. 
Talk to you soon!
Cristina
 

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 : http://cristinalilianadinu.blogspot.com/2010/07/se-cauta-donator-de-celule-stem-pentru.html
 
A map of the area where the testing is taking place you can find here: http://3.bp.blogspot.com/_8xtPL2Gat74/TFVphfWWTcI/AAAAAAAAAHY/9YwwZzJp9oo/s1600/harta.png
 
In order to read how the search started and why it’s so necessary, follow the link below: http://cristinalilianadinu.blogspot.com/2010/07/se-cauta-donator-de-celule-stem-pentru.html
 
The accounts for receiving donations or sponsorships, in order to supplement the limited stocks of reagents, needed for the testing, are mentioned here : http://cristinalilianadinu.blogspot.com/p/cum-ma-puteti-ajuta.html
 
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.

DETAILS ON HOW TO JOIN THE STEM CELL DONOR REGISTRY

August 15th, 2010 Comments off
Details on how to join the Stem Cell Donor Registry
 
  1. Stage 1
 
Information
 
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.