Website Launch – Lancio Sito!

April 1, 2011

Countdown has started: come back visit us on April 14th (Alex’s birthday, Beat Leukemia’s founder), you will be among the first ones to see our new website! New functions, more languages, additional informational articles to better meet the expectations of you: a leukemia patient, with your family and friends; a volunteer looking for an Organization to make the difference against leukemia; a doctor or a nurse. Discover all the website and let us know how you like it! info@beat-leukemia.org

Il gran giorno è arrivato: il lancio del nuovo sito Beat Leukemia! Il 14 Aprile (compleanno del fondatore, Ale) visitando questo indirizzo potrete finalmente scoprire il nostro nuovo sito! Nuove funzionalità, più lingue di consultazione, altri articoli di informazione per meglio venire incontro alle tue esigenze: che tu sia un malato di leucemia, o un suo parente o amico; un volontario che cerca la giusta Associazione per dare il suo contributo contro la malattia; un dottore o un infermiere. Scopri tutte le novità del sito, e facci sapere cosa ne pensi! info@beat-leukemia.org


New Website! – Nuovo Sito!

March 21, 2010

A new website is under construction: more languages, articles, possibilities to interact betweek members! Come back here soon, be the first to test the beta version! In the meanwhile, please visit and write on BL’s wall on FB: http://www.facebook.com/#!/group.php?gid=6974161502&ref=ts 

Un nuovo sito sta per essere lanciato: più lingue, articoli, possibilità di interagire tra membri! Torna a visitarci presto, potrai essere il primo a testare la versione beta! Nel frattempo, puoi visitare e scrivere sul wall BL di FB: http://www.facebook.com/#!/group.php?gid=6974161502&ref=ts


Beat Leukemia è ONLUS! Donaci il tuo 5×1000

March 20, 2010

Beat Leukemia è stata riconosciuta come associazione ONLUS. Ogni donazione ricevuta tramite bonifico bancario diventa quindi fiscalmente deducibile (il nostro IBAN è: IT23X0351220404000000007842 , intestato a “Beat Leukemia ONLUS”), e puoi donarci il tuo 5×1000 in dichiarazione dei redditi (non ti costa nulla!). Trovate il promemoria dei nostri dati sul nuovissimo biglietto da visita!

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BEAT LEUKEMIA and AIL join forces in support of young researchers.

September 2, 2009

Beat Leukemia and AIL (the Italian Association for the fight against Leukemia) join forces to support young researchers and hematologists fighting leukemia and the other blood diseases through the sale of the Beat Leukemia wristbands. For more info in how to purchase the bands contact info@beat-leukemia.org or info@ailmilano.it


What is chemotherapy?

August 21, 2009

This term is very often used to identify a type of treatment aimed at fighting different types of cancer, including leukemia, the cancer of the bone marrow and blood. There still remains some confusion about what chemotherapy exactly is.
This article aims at clarifying what chemotherapy is and what it is for, which drugs it is composed of, how they work and what are their main side effects, and finally at giving some advice on how to effectively manage these side effects.

As I am used to do on this ‘blog’ side of Beat Leukemia, I wrote this article drawing from my personal experience, and what I saw happen to other patients very often. I hence invite you readers to answer leaving comments at the end of the page, especially if you know of other side effects and how to deal with them.

Chemotherapy is a group of drugs used to destroy cancer cells, according to well defined protocols for each tumor type, and adapted to the single patient alongside parameters such as age, weight, and general health conditions.

Chemotherapy drugs can be given in different forms, and precisely:

– Intravenous, through a peripheric or central venous catheter (CVC);
– By means of injections, in muscles or below skin;
– Orally, with pills.

These drugs attack and destroy the cancer cells during several phases of their development. Unfortunately however, they are not able to distinguish cancer cells from the healthy ones and this large scale bombing gives place to a number of side effects for the patient.

Every day our body’s cells, especially “rapid replications cells”, die and are substituted by new ones that are continuously produced in the lower layers. It is the case for instance of the skin, or hair. Chemotherapy has the effect of temporarily blocking the production of new cells, so once the superficial ones are dead, there are no new ones ready to replace them. These leads to the skin peeling off (in the case of skin), something similar to a sunburn. When this happens inside the oral cavity, this is called “mucositis” and can cause strong pain in the mouth and throat, making it impossible to swallow any food or beverage. Mucositis often affects also the stomach, causing nausea, vomit and loss of appetite, the intestine causing diarrhea, and the end of the intestine, making it possible for hemorrhoids to appear.
Which of these effects will appear and with what intensity depends on several factors such as the dose of chemotherapy taken, the type of drug used or the number of cycles already done before. Every patient can anyway react in a different way. The side effects of chemotherapy tend to accumulate and get heavier, and it takes time before they are eliminated by the body.

Concerning nausea, there exist today many very effective anti-nausea drugs that are given to the patient right before the chemotherapy or if necessary. The chemotherapy itself has been modified in time to reduce this side effect as possible. It can still help to eat light before or during the infusion of the drugs, and try to eat smaller quantities, more often.
Intestine issues can be managed with anti-diarrhea drugs. Concerning hemorrhoids instead it can be useful to ask for the visit of a specialist that can suggest a therapy to prevent them to be started before the chemotherapy.
The oral cavity is interested when the chemotherapy is very intense. Nothing can be done to cure mucositis, but it is possible to remove the pain with pain killers, and prevent complications such as bacterial infections with a careful oral hygiene, matching the use of a soft toothbrush with an effective combination of different mouthwash.

Chemotherapy also has side effects on the reproductive system. Nothing to do with the possibility of having sex, which must still be protected with the use of condoms, and matched with a careful hygiene of the body, particularly the genital area. Chemotherapy can instead compromise, temporarily or permanently, fertility, that is the ability to reproduce. It is hence important to get informed with your doctor, if the seriousness or urgency of the disease allow for it, BEFORE starting treatment, about the possibility to preserve a sample of sperm or ovules with the methods that are available today.


What is a bone marrow transplant?

May 14, 2009

Below, you can read a sort of reportage of my own experience of a bone marrow transplant. I underwent the transplant in March 2009 to beat my Acute Promyelocytic Leukemia. I have been in a sterile room for about two months and experienced most of the typical effects that a patients can experience in such situation. I hope my description is clear enough for you to understand more about this not very well known procedure. I also hope that my personal point of view will be both easier and more interesting to read than most technical information you can find elsewhere on the internet. You are welcome to comment at the end of the article. Enjoy!

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The moment of the transplant was, as I had anticipated, magic. Allow me to clarify that a bone marrow transplant is NOT an operation, and that the bone marrow is NOT the spinal marrow! It is much easier to use instead the term “marrow blood” to indicate the blood that runs inside of our bones, all of our bones. This blood is particularly rich of hemopoietic stem cells, that is the ‘mother’ cells that give birth to all blood cells: red cells, white cells, and platelets. Every day, these blood cells die after having done their respective jobs, and they are substituted by new cells generated by the mother cells: the hemopoietic stem cells. Leukemia is the cancer that affects these stem cells, and leads them to produce wrong quantities of blood cells, causing severe damages to the body, which can lead to death if not cured. The most effective way to cure leukemia today is to completely destroy this system of out-of-control mother cells, and substitute it with a new one coming from a healthy donor. This is called a bone marrow transplant. So the bone marrow is not white 🙂 but it’s simply the blood that runs inside all of our bones, rich in stem cells.

You had the chance to learn more about the dimension of donation, thanks to my brother’s article (soon available here). This blood was taken from him by means of surgery, inserting needles in his hips bones in total anesthesia. There also exist another procedure, less invasive, by means of which this blood and stem cells are collected from peripheral blood, after mobilization, like it was a normal blood donation. There exist advantages and disadvantages for both donor and recipient, but I won’t treat these here.
Once taken from my brother, this blood was given to me via central line. You can see in the photos how this looks exactly like a normal blood infusion. This was for me a very emotional moment, I had my eyes and mouth wide open in wonder, watching every single drop fall down and enter my body. After two years fighting this was a very symbolic moment. However, as I said, the blood infusion is just one of the phases of a transplant.

The infusion of bone marrow blood, aka the transplant!

The infusion of bone marrow blood, aka the transplant!

To help you better understand what a bone marrow transplant is, I will use a metaphor. Imagine an island surrounded by a barrier reef. The reef is live marine vegetation, which produces oxygen and food for the fishes that live around that island. Now imagine that the reef gets sick, and stops producing food in the right quantities. The fish slowly begin to die. At this stage, the only solution is to kill this sick vegetation, remove it completely, and plant new, healthy corals, coming from another reef. This cannot be done by hand. You can’t take the plants off one by one and substitute them with adult ones. The only way is to kill the vegetation with chemical products and radiations. This is how a bone marrow transplant begins: the patient is given high dose chemotherapy, sometimes accompanied by total body irradiation to destroy the existing sick marrow.
Right after, new ‘seeds’ are sampled from a healthy reef. These are the donor’s stem cells, that are laid on the dying reef, with the aim of settling there and beginning to create a new, healthy vegetation. For this to take place however, two to three weeks are necessary. During this time the fish is left with little to eat, and they have to work hard to survive. In transplant terms, this means that the patient needs continuous infusions of fresh blood and platelets, and remains exposed to a high risk of infection, because it is not possible to infuse white cells. For this reason, a BM transplant is carried out in a sterile room, where the patient is kept for the whole time necessary for the process, which is about a month and a half on average.
Unfortunately, the “chemo+radiation” bombing hits everything, and involves all rapid-replication cells of the body, that is for instance the skin cells. In a healthy body, the superficial skin cells continuously die, and are substituted by new ones that are generated beneath. Chemotherapy and radiation block the process of new cell creation, so that when the superficial cells die, there are none ready to substitute them. This takes place particularly in the oral cavity, stomach, and intestine, causing what is known as ‘mucositis’. After a few days from the transplant, I began to feel pain in my throat, which intensified every day. It got to the point where it felt like a bee was stinging me every time I swallowed. Also my mouth hurt and I lost my voice. There is no way to avoid this phenomenon, only the pain can be managed. Fentanyl and morphine worked for me, or better they stoned me to the point that I could sleep and not think about it. I had to stop eating and drinking, because my irritated stomach was sending everything back. Also body hair is rapidly-replicating cells, this is why people who does chemotherapy lose their hair: the lost ones are not substituted by new ones for a while.

After a few weeks the new bone marrow settles inside the receiver’s bones, and begins to produce new blood cells. Just like they were ‘seeds’, in this period you can only wait and be patient, trying to handle all side effects, and deal with the fever that comes in most cases.
This phase was particularly tough for me, both from a physical and psychological point of view. During these two years I thought I had tried everything, and I really didn’t expect this one to be so hard.
Fever got me on a Sunday morning, and at the same time the pain from the radiation burnings intensified, particularly on my chest, neck, back, and hands, until it became really hard to stand. My hands were particularly problematic because you use them for everything, and when they are burnt touching any object is torture (imagine even just taking a shower or brushing your teeth!).

Hand burning caused by total body irradiation (TBI)

Hand burning caused by total body irradiation (TBI)

From a psychological point of view, fever at 40C that doesn’t go down, while your white cells count is zero, is a very scary condition. As human beings, we are so used to being on top of the food chain that we never feel threatened by anything, to the point that we seek extreme emotions climbing mountains or jumping off airplanes with a parachute. Being without defenses exposes you to invisible predators, virus and bacteria, that can be fatal to you. The sensation of being fighting every second for survival, in the hope that the new marrow starts working soon and come to your rescue before the micro-predators take over, is true adrenalin. Skydiving is for beginners!

Skin rash cause by the graft versus host disease (GVHD)

Skin rash caused by the graft versus host disease (GVHD)

Then my values recovered and I began to feel better every day. We also had to deal with a graft versus host disease (GVHD). This happens when the donor’s marrow recognizes certain tissues of the receiver/host as an enemy, and attacks it. In my case it turned into further skin burnings, that then gradually disappeared thanks to high doses of cortisone. The new marrow is now working great and producing good values (thank you Mickey, this marrow rocks!:). In a few days we will test my new bone marrow to see how things are going. They could let me go home soon (but I’m superstitious and would rather not talk about this), and it seems like the next months will be determinant. The therapies I was subject to were the strongest possible ones, and my whole body, not only my immune system, will need much time to recover completely. Further, the first six months from the transplant are statistically the most delicate ones. If I manage to get through without further trouble, then I’ll really be able to relax. A bit more patience then, but boy it’s worth it!

I care about being sincere with you, and telling you the truth about this disease, and the transplant. The reason for all this weeping is certainly not to attract your sympathy, but rather allow you to understand something that maybe nobody else will have the courage or will to tell you. Life is hard for ANY cancer patient, ANY type of cancer, and if one of these told you that her therapy was a piece of cake, know that she only did that cause she didn’t want to bother you, or because in her head she thought that you can’t understand anyway. True that there is nothing like trying it yourself, but it is not right that the person involved remain alone, and the people around remain ignorant.
I think I can be credible if I tell you that this transplant, carried out at full throttle, was seriously heavy. After two years experiencing all sort of things, including intensive care (twice), emergency surgery, hematology, and now the transplant centre, I think I can almost objectively tell how bad is ‘bad’. The reason I’m telling you this is that I really can’t think of even just one other person having to experience what I have been through. Cancer incidence is increasing; ever more people get sick, and ever younger. I realized this especially in the day hospital, where I had the chance to meet so much young people. With this situation, we can no longer play the musical chairs game just hoping that it won’t be us the unlucky ones standing when the music stops. Chances are too high, and we can’t keep on hiding our heads in the sand and pretend the problem doesn’t exist simply because it scares us to even just talk about it.
It’s time to face reality.
At diagnosis, I wondered why didn’t I do something when it was in my power to change things. I don’t want anyone to find himself in the same situation, with the same regret.
The good news is that, together, we CAN change our future. For this reason, I encourage you to act RIGHT NOW, checking out the page “Help BL” of this website, where you can find the list of reliable organizations that fight leukemia in your country. There you’ll be able to choose in what way you intend to join the fight, whether as donors, volunteers, or by becoming blood and/or bone marrow donors. If your country is not in the list but you know a reliable local organization, please let me know about it so I can add it. If your country is not present and you don’t know where to contribute, know that research networks are global, and results are shared in real time between scientists, so it doesn’t matter where or how you contribute, your help will still have an impact.
Let’s kick this ball back in the face of the sender. We didn’t ask for it, and we don’t deserve it.


Welcome to Beat Leukemia

January 28, 2009

Welcome to the beat leukemia website. Browse the pages and contact info@beat-leukemia.org for any thing you’d like to be added to the site or for any incorrect information. Let us know how you like it!