Cristina. Liliana Dinu

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

 

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.

 

 

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!

 

 

Once again, I don’t know where to start. Once again, so many things happened since my last post therefore I’m not sure in which order I should tell you everything that happened lately.

First of all , I want to thank you from my heart for your help, for everything ! I have managed to raise the amount of money that was lacking, money  needed in order to pay for my transplant. I cannot express how thankful I am.

Also, I want to thank everyone that   made possible the charity concert that took place on the 10^th of March, in Jukebox Club. I would like to thank to all of my new gained friends, to the people who organized the event, to all the artists that agreed to sing  for me, and also to the artists who, due to the lack of time and Thank you very much to all my new friends, thank you very much to all those that helped organize the concert , to the artists that accepted to sing for me at this event and to those artists that, due to lack of time and lack of space on the poster,  agreed to participate at  the event as guests.  I would also like to thank to all the media and mass media representatives involved.

Many thanks from the bottom of my heart to all of you who attended this event and thank you so much CRISTINA ! But this is another story !

I will stop for now, otherwise you will tell me that I’m not at the Oscars. But you can imagine how all of this makes me feel, once again.

 

Now you could say “ ok , you have the money, so  you can do the transplant anytime now” . Well , I wish it would have been that easy. Unfortunately, in the meantime, the disease started to fool around, it’s in progression again as deducted from the Pet-CT scan that  was supposed to be the last examination of that kind before the transplant. And because a transplant made while the disease is in progression would be  uneffective, the doctors decided we need to stop the disease again with two more chemotherapy cycles ( two would be ideal , maximum three) .

 

Also, the doctors have decided to perform another biopsy, to reconfirm the diagnosis, before the transplant . A reasonable measure considering the fact that my disease doesn’t react quite tipically, so it has to be checked before every big step. I was diagnosed in august 2008, they reconfirmed the diagnosis in 2009 through another biopsy ( two histopathologists confirmed the diagnostic independently) and now they want, again, recent certainty.

Last night I was discharged from the  clinic where I underwent surgery  on Wednesday, surgery performed in order to extract a suspect lymph node that will be used for a new histopathology  analysis . Here it takes one week for the results to be ready.

I am feeling ok after the surgery , they have a brilliant surgeon here . It’s his fourth surgery performed on me , with no after-surgery complications and with almost no visible scars ( not that I would care about that right now, but in a few years , while on the beach, it will matter ! J )

 

So basically the plan is as follows :

 

-         We have to wait till Wednesday or Thursday for the  wound to heal ( I have a drain – a tube and a plastic bottle with a vacuum – responsible for collecting the lymphatic and interstitial  liquid until healing , in order to avoid any complications) .

-         On Wednesday or on Thursday , depending on the surgeon’s recommendation, I will start the first round of chemotherapy – three days will be spent in the hospital , two consecutive ones and another one on the 8^th day of the chemotherapy round.  I will be going through two rounds of chemotherapy after which we will

-         Re-evaluate the situation based on a clinical exam, ultrasounds and, if necessary, a MRI.   As soon as the disease will be stopped from progression we’ll get to the

-         TRANSPLANT

We hope and we estimate that all should take around two months, considering the fact that one chemo round lasts between 3 weeks and a month , depending on how fast the cells recover after chemotherapy.

You are probably wondering “what if the disease doesn’t stop”. If the disease doesn’t stop, we’ll use another type of chemo. There are two alternative chemo treatments that proved to be effective in my current situation. The disease is at first sensitive to the chemotherapy, and because of that we’ll do everything in an alert pace, in order have the best results. And besides that, THE DISEASE WILL STOP !

Enough, I won’t  bother you any longer with technical details.

 

Until now I avoided to post about this stage of the treatment on the blog because I wanted to make sure that from a legal point of view it won’t negatively affect my medical file that’s being reviewed by the Public Health Committee. I have analyzed the current situation, together with doctors, friends and colleague  lawyers and we came to the conclusion that my file is, from a medical and legal point of view, beyond any form of criticism. Accordingly, I have told you the story and I’m waiting, along with my friends and with you beside me, the Committee’s response.

 

I end my story here, not before I’ll make the ferm promise to keep you updated and to do everything in my power in order to win the battle against this disease, as well as you did everything you could to help me in this battle !

 

Thank you!

 

I think I got my good share of luck. I always liked to think this way, even during these past 2 years and I have my reasons to say that.
One of those reasons would be that, as you probably already noticed, a week and a half ago I only had 15 000 EUR out of the total amount of 80 000 EUR so much needed for the transplant.
I was already picturing myself having to discuss with the doctors the possibility of delaying the transplant which, in normal conditions, would had meant a delay of a at least one month , meaning the time needed for another patient to make a transplant and to recover .
Now I have 62 000 out the total of 80 000 needed.
I cannot express how happy I was when I saw that you didn’t give up when the odds of collecting the entire amount were dropping! And I thank you for that!

The second reason for considering myself lucky is that while I was already seeing myself telling the doctors that I will delay the payment hence the delay of the transplant, having to face a “that’s fine, but we’ll put another patient into the transplant procedure, until you are ready” which can be translated in a delay of at least one month, I was surprised when the doctors brought me, one day ago, without any intervention from my side, some good news. We have to delay initiating the procedure for a couple of days until some of the test results are available to them. This delay was due to a very busy period they are going through at the Pet-CT department, thus they managed to make an appointment only for yesterday at 5 PM. So, another chance to get all the money in time.
Sure, they can tell me anytime in the following days like “Here are the results. Let’s talk and then have the transplant “…if I have the money into the hospital’s account. If not, I might have to face the delay I was talking about, which I really wouldn’t want or need to happen.

I wanted to let you know that I managed to extend the time period during which I can receive donations by sms using all of the three mobile phone operators until the 14th of March. Romtelecom phone numbers are also still available. These methods of donating are only available from Romania.
I want to thank you for everything! For your good thoughts, for forwarding to your friends my emails and my problems, for forwarding my cry for help! Thank you so much!
I am still 18 602 EUR short. I might need them tomorrow or on Friday… I’m not sure when…
All I know is that I still need a helping hand. And I know that you will lend it to me.

***
On a different topic, I have to say that……I finally got home! After 10 month of staying in Vienna forced by the undertaking treatment and its follow-ups, I got to see my room, my cats and my stuff. I didn’t think I would have enough time to fit in again and to feel sorry for having to leave again. But there was enough time for that to happen. The initial plan was to stay for 4 days and I ended staying 10. It was great. Home is home. With all the irony of the situation…thank you, doctor, for saying you had to see me for half an hour.
But since we are already on this subject I have to say that I truly regret the fact that I still have to put up with situations when I need to explain myself to certain people that I went to Vienna not because I was a spoiled kid, that it wasn’t for the “luxurious accommodations” over there that I decided to go back and forth Bucharest-Vienna from August 2008 until April 2009 and then to decide to stay in Vienna starting with April 2009 until present. It’s not ok to have your family close to you only by making them sacrifice their day to day life. Everything seems so …broken, believe me! Sure, it’s a nice city, very civilized, clean, but you don’t get the chance to find any joy in that, I assure you. You only feel that huge frustration coming from the fact that you are, against your will, banished from your own country. It wasn’t only the cancer that “suspended” my life, it was also the fact that I cannot get the appropriate treatment in my own country, closer to what I call “home”. So, please, before you start blaming me just try to walk a mile in my shoes!

To end this discussion in the same manner I always have, I thank you all for everything and wish you a beautiful, healthy and colorful spring! I wish the same for myself but for the next spring!

Kind regards
Cristina Dinu

PS – The doctors had to finally admit that this transplant procedure cannot be performed in our country, and now the authorities have to admit the same thing as well. I owe you this info but, without getting into details, I assure you that I did everything that could have been done and I would had never asked for your help before I knew for sure that I cannot count on the authorities to aprove my request and pay for the transplant in time for me to get the procedure done, while there is still time. I will keep you posted!

Sunt dupa inca o zi de chimioterapie, ziua de ieri.

Am facut chimioterapie o data pe saptamana, incepand cu data de 14.01, am continuat cu o a doua cura pe 20 si am mai facut o zi de tratament ieri, pe 27 ianuarie.

Asta a fost decizia medicului : cata vreme analizele mele arata ca maduva, in special, si organismul, in general, suporta foarte bine toxicitatea acestui tratament, cata vreme indicatorii de inflamatie sugereaza ca boala raspunde la protocolul asta de chimioterapie, ar trebui sa il tinem pe domnul limfom Hodgkin numai in suturi, daca imi este permisa exprimarea.

Din fericire, acestea sunt vesti foarte bune, chiar daca nu era dorinta mea cea mai arzatoare sa ma prezint la spital pentru o zi in fiecare saptamana. Ma intreb cand o sa ma considere una d-ale lor, sa imi puna in brate cateva instrumente medicale si sa ma trimita la pacient in salon, sau macar un mop si o galeata…

Sigur, acum avem numai indicii ca boala nu numai ca este tinuta sub control, dar si cedeaza treptat in urma acestui tip de chimioterapie. Medicii apreciaza ca ar trebui sa mai treaca putin timp pana la efectuarea unor examene medicale mai extensive care sa arate situatia cu certitudine.

Pentru moment, am o pauza de doua saptamani, pana cand, in saptamana 8-14 februarie, in functie de cat de repede imi revin dupa aceste ture de chimioterapie, urmeaza sa fac o noua cura, un protocol care cuprinde substanta de pana acum, gemcitabina, la care se va adauga o substanta mai puternica, cisplatin. De asemenea, probabil ca va fi eliminat si cortizonul cu acea ocazie din tratament, asa incat nu voi mai fi insomniaca si agitata, dar asta inseamna si ca de curatenia domestica se va ocupa exclusiv sora mea, eu revenind la cotele de energie de dinainte de experienta “cortizon in doze mari”.

Pana atunci, voi face analize de sange destul de des, pentru a monitoriza cu atentie situatia de dupa administrearea chimioterapiei (deja marti, inainte de ultima tura de chimioterapie, celulele erau destul de putinele), asa incat sa nu risc aparitia vreunei infectii si sa putem interveni la timp, in caz de necesitate, cu antibiotic intravenos sau cu transfuzii de eritrocite sau de trombocite.

Va voi tine la curent si, asa cum am promis, voi reveni cat de curand si cu informatiile despre care va vorbeam in postarea trecuta!

Cu recunostinta si entuziasm,

Cristina DINU

Ca un Ps – as vrea sa va asigur de faptul ca citesc toate mesajele dumneavoastra, va multumesc din suflet pentru faptul ca sunteti alaturi de mine, pentru urarile transmise, si eu sunt foarte optimista! Iar cat priveste mesajele prin care imi spuneti ca va ajuta ce postez pe blog, la nivel de informatie medicala trecuta prin filtrul unui pacient experimentat (adica eu ), ma bucur sa stiu ca pot ajuta, promit ca lucrez la elaborarea unei modalitati de a va informa mult mai serioasa, complexa si centralizata, iar pana atunci, va stau la dispozitie cu raspunsuri la intrebari(desi sper sa nu aveti nevoie), la adresa de e-mail dinucristina8223@yahoo.com

Revin, destul de tarziu, cu informatii.

Asa cum va spuneam, in data de 15.09 trebuia sa aflu data exacta a internarii.

Ei bine, se pare ca nu se poate mentiona o data exacta, mi-au spus ca trebuie deja sa stau cu telefonul in mana, pentru ca ma pot suna in orice moment. Pacientul al carui loc il voi lua a inceput sa isi revina, asa ca nu mai are mult de stat in spital. Medicii au spus ca, de regula, telefonul buclucas suna cu o zi inainte, si numai in situatii cu totul exceptionale, cu doua zile inainte.

Partea foarte buna este ca medicul – sef al echipei de transplant -, centralizand toate rezultatele analizelor pre-transplant, a fost incantat de rezultate, spunand ca sunt intr-o forma generala foarte buna pentru a incepe procedurile si ca nu crede ca voi avea probleme majore. Sigur ca sunt unele efecte inevitabile, deloc placute. Dar, comparativ cu posibilele riscuri, a caror incidenta este mai ridicata atunci cand starea generala a pacientului este una proasta, de regula din cauza tratamentelor urmate pana la momentul transplantului, situatia mea este chiar una foarte buna.

Am vizitat, asa cum era planificat, sectia de transplant.

 Singurul regret pe care il am este acela de a nu fi fost suficient de inspirata incat sa fac poze. Dar voi face cand ma interneaza. (Poza atasata postarii este preluata de pe site-ul oficial al spitalului)

Totul este atat de bine pus la punct incat mi-a dat o stare de liniste la care nu ma asteptam, cu tot optimismul si cu toata increderea de care dispun. Ba mai mult, m-a amuzat sa o aud pe mama, dupa turul organizat, multumind obsesiv medicului care ne-a ”prezentat” sectia. Si a iesit de acolo in mod evident mult mai linistita.

Vederea este intr-adevar superba. Dotarile sunt unele exceptionale. Din fericire, voi avea internet. Asa ca sper sa fiu si in stare sa postez din cand in cand pe blog despre cum decurg lucrurile. Daca nu, cu siguranta o va face sora mea.

Cam atat pentru moment.

Scriu imediat ce primesc TELEFONUL.

Va multumesc!

Cu aceeasi recunostinta,

Cristina Dinu