Harley, the Cuban who has been able to access one of the 20 CAR-T therapies that have been administered in the Canary Islands

• Health Not a trace of Alyssa's cancer, the visible face of the new generation of CAR-T therapies

• Advanced therapies Design a CAR-T therapy with donor cells to eliminate multiple myeloma

Sometimes (many) life goes wrong.

And it is very difficult to straighten it out because, as they say, several misfortunes come together.

But even from fatalities positive things are extracted.

(52 years old),

who has been treated with the innovative

, lives with this philosophy

.

His story have not been easy.

He was a carpenter in Cuba, but his wife obtained Spanish nationality thanks to her grandparents and wanted to come to Spain.

Harley sold his business and embarked on the adventure, but his wife and his son had come in advance and

her.

Harley arrived in the Canary Islands anyway to try to return with her and her son, but it was not possible and they went to live in the US, leaving Harley in Tenerife.

That was eight years ago, and for Harley, going back to Cuba was not an option.

"I sold everything and starting over there was very difficult. Cuba is bad and is going from bad to worse," the Cuban stresses.

He was left alone in Tenerife and was working intermittently in construction and caring for the elderly.

"I found another older man and I took care of him without a contract for three and a half years, until I got sick. When the disease struck I had to leave work," he says.

His disease is

, one of the most common types of lymphoma, accounting for approximately

.

It is so called because it originates from large B cells (lymphocytes) and has a diffuse pattern of lymph node invasion.

"My testicle began to swell and that's where it all started. I went to the doctor for that and the urologist told me that there was a lot of fluid and they had to operate, but the surgeon did some tests and said that he was not going to operate because I had there another foreign body," explains Harley.

He had another appointment with the urologist but it never came because he got quite serious.

"I hadn't eaten for three days because I vomited everything, even the water. I lived alone and couldn't even get out of bed, so I called a friend and he showed up with two other friends and they took me to the hospital. When the doctor saw the vomit, which was brown, said that

, "continues the man.

A detection in time, before the arrival of the Covid

The diagnosis was made

officially began in Spain, in

.

So things were even more difficult.

"I thank God that I did not catch the Covid in those first moments. I always tell my friends that I am alive by a miracle because I was lucky enough to be isolated in a room by myself and I saw that many people were dying from the pandemic, but I did not get sick. They had given me a very strong treatment that left my defenses low and I caught many other viruses, but not Covid, "he says.

Harley was put

.

"In hematological cancers, we do not talk so much about metastasis but about the amount of tumor mass of some prognostic factors, which he did meet with high risk. He initially responded well to chemotherapy treatment, but in less than a year we saw that the tumor in the blood had returned", explains Álvaro Bienert, Hematology Associate Specialist (FEA) at the University Hospital of the Canary Islands (HUC), in Santa Cruz de Tenerife.

was proposed according to the standards

we have in our hospital, and he underwent an

[the patient's own stem cells found in the peripheral blood or in the bone marrow], with a very good response, but after a year the cancer returned," says Bienert.

At this point it is already summer 2022 and before this

the Tenerife hospital contacted the Doctor Negrín University Hospital of Gran Canaria,

(since 2019 precisely on an exceptional basis, with the first consignment of hospitals that agreed in our country, due to "its uniqueness in being in island territory").

To know more

Health.

This is how the national committee of experts on CAR-T therapy for hematological tumors works

• Drafting: SONIA MORENOMadrid

This is how the national committee of experts on CAR-T therapy for hematological tumors works

Health.

These are the 14 new centers for CAR-T therapy in Spain

• Drafting: CARMEN TORRENTMadrid

These are the 14 new centers for CAR-T therapy in Spain

CAR-T therapy has three stages

: first, cells of the patient's immune system, the lymphocytes, are extracted in a process called

.

These

adding CARs (chimeric antigen receptors) and, finally, these modified lymphocytes

by infusion (previously the patient may receive chemotherapy to prepare their organism).

With this genetic modification, what is achieved, explains Bienert, is that the cells are able to recognize the tumor directly and eliminate it,

.

Harley was able to dodge

in the early, difficult times of the pandemic, but ultimately succumbed to the virus

.

She made it through mildly, but it did delay CAR-T therapy a bit, though she did finally receive it before the end of the year.

It has been

in the three years that the treatment has been underway, says Bienert.

This is how Harley benefited from the 'A tu lado' Program

Apart from the blow of receiving the diagnosis of a serious illness, there are situations that add difficulty to the process, for example, living on an island and having to move to another: even if they are not great distances, it is not that simple.

Or, fundamentally, the fact of

: Harley was alone in Tenerife,

.

His financial situation was not good either, since due to illness he has not worked for a long time.

For this reason, the hospital requested help from the Spanish Association of People Affected by Lymphoma, Myeloma and Leukemia (AEAL), which has the

.

Although in June of last year Health increased the number of hospitals in the advanced therapy network of the national health system, there are still few (around 30, including some exclusively pediatric and additional ones), which is why

, with the costs that this entails and that not everyone can assume.

For this reason, AEAL, in collaboration with the Gilead pharmaceutical laboratory, launched this

during the development of therapy, and

.

If a series of requirements are met (prescription for treatment with CAR-T therapy, habitual residence located more than an hour and a half away from the center where the treatment will be carried out or having an income of less than a certain amount) you can access the program , as is the case with Harley.

"Harley was referred to me when I was in the process of waiting to re-infuse him with the modified cells. I have since talked to him throughout the entire process and what I can tell is that he

. He always tends to keep the positive side and see things with a lot of optimism. It is something that

. Another person in those same conditions, with other coping styles, might have passed this process with greater difficulty", asserts Lara Fernández, a psycho-oncologist at AEAL.

"With this

, but to me at least what he has transmitted to me is 'well, I'm getting by', 'I think that this is going to work', 'I feel fine, I think this is going to work out', 'I trust the doctors, everything can come out' A person who has this way of dealing with this situation will obviously handle it better than another person who tends to focus on negative thoughts, to ruminate, to anticipate negatively, to have a catastrophic vision of the situation", emphasizes the psycho-oncologist.

"I'm not afraid of death because we were born to die, sooner or later we have to die.

," says Harley with conviction, who believes in destiny and in which we all have a marked day to die, "if not, it would not be possible for me to live with so many things that I have gone through".

It is not the disease, therefore,

, as he himself emphasizes, but

From him.

"Mainly my mother. It's the only thing I think about," he reflects, moved to tears.

After a moment, he tells that his mother is 72 years old and lives in the countryside, about 20 kilometers from the city of Trinidad.

.

"She doesn't understand anything about technology, so we can only talk and video call when she goes to town to visit my sister or brother or when my brother visits her."

She does talk to her son on a video call, although

.

"She was just going to come when I was diagnosed, she had a ticket bought, but the pandemic came and she couldn't come. She wants to visit me this year."

When you think about your future

.

"Cancer can be cured, but I have a leg that is practically crippled. It swells a lot, I have pain, I can barely walk... it's circulatory, the doctor explained to me that the chemotherapies affected me."

"I would be delighted for life to work, I am crazy to do it because it is also giving me problems with the residence here.

. So I went to a public defender and I am waiting for those procedures".

Dr. Bienert comments that the initial sequelae of chemo treatments are more drastic than with new therapies or immunotherapy, "but it is true that many patients can be cured with this first line of chemotherapy and the initial sequelae lighten up a bit In the case of Harley, he had

that we anticipate could already have come from the base,

, and with some chemo treatment or high-dose corticosteroids, it may have worsened."

Fate, as Harley says, has also brought him good things.

"Arriving in Spain and not looking back, because

. And meeting my partner, Iska, a very special, exceptional woman. When I met her, she owed three months' rent and she left she took over and is the one who pays for it because I no longer have help of any kind. Iska has helped me only out of love because I can't offer her anything,

. That's right.

thing of destiny too, an angel that God sent me".

More than 40% survive two years with CAR-T

Harley is waiting in a few days for some tests at the Doctor Negrín University Hospital of Gran Canaria.

"They have to do a PET scan to

."

If all goes well, you will have quarterly reviews, then semi-annual, yearly, and every 5-7 years.

"Since it is one of the patients that has been treated in the first three years of operation of this therapy,

," says Bienert.

The specialist explains that in patients who do not have high-risk prognostic factors (having a large amount of tumor, involvement outside the nodes or abnormalities in the analyzes, for example) "practically

. The problem is like in Harley, those patients who do not respond well to chemotherapy treatment. The truth is that

".

Could Harley's cancer come back?

"In medicine, nothing is ever zero or 100. If he came back, we would see if he could get into a clinical trial or if there was some special treatment because we have already seen that chemotherapy in this type of tumor has no effect on him," he adds. the hematologist.

"It will also depend on the months of response that he has and how he has responded, but that remains to be seen."

But the studies do indicate, he adds, that

, but it is clear that it is a new therapy and it is being improved every time a little more for those patients who need

, that is, that the advantage is quite important".

According to the criteria of The Trust Project

Know more

• cancer

• Diseases

• advanced therapies