Get in a situation: one day awake and has a watch bomb, with a timer, stuck at your foot.
The artifices can not do anything to deactivate it, only sometimes get, testing cable combinations, delaying the clock a bit.
But every day he gets up knowing that that accountant follows his course and that each time are less combinations of possible cables, time is exhausted and when that happens the pump will explode and you will die.
With this certainty, many women and some men live in Spain.
The pump is a metastatic breast cancer and the combinations of cables are the new treatments that arise, so necessary for their survival.
“There are people who can not wait because the enemy of cancer, and especially of metastasis, is time,” says Pilar Fernández, president of the Metastatic Breast Cancer Association (ACMM).
This Asturian had a first breast carcinoma 29 years ago and a second ago 14, and 5 years ago it detected brachial plexus metastasis (nervous structure that runs through the neck and upper shoulder).
Early diagnosis and the improvement of treatments have allowed exponentially the survival of breast cancer over the past 20 years, but there are still many women who die for this disease.
The breast were the most frequently diagnosed tumors in the world in the year 2020 (12.5% of total), according to Global Cancer Observatory, interactive web platform developed by the International Cancer Research Center (IARC).
It is also the fifth cancer that more deaths caused in the world by 2020 (6.9%, almost 700,000 people), the fourth in Spain (6,651 people) and the first in women in our country (6,572).
“Not all breast cancers are cured, there are 20% of people for whom there are no treatments, have ever been called alarmists, but we have reality: Metastatic breast cancer is the first cause of death in women between 35
and 50 years, above any other illness. That more than 6,000 people die a year assumes that every 90 minutes someone dies for breast cancer, “explains Pilar.
One in eight women will suffer from breast cancer throughout the life of it.
Of these, 5-6% will develop metastatic breast cancer at the time of diagnosis and around 20-30% over time (even years after completing the treatments).
“In our case, metastases can be of liver, lung, cerebral and bone. With current treatments the average life is 3 to 5 years”.
“With early diagnosis and mammography campaigns are increasingly diagnosed in very early stadiums and are curable, which improves the numbers, numbers, and survival rate. However, when the patient is metastatic, in a
95% of the cases die due to cancer, and that happens in a few months or years since the metastasis are diagnosed. That’s the handicap, we have not cured cancer at all, the only thing we can do is to prevent it, that by
assumption, and when we can not prevent it because there is no etiological factor [those who are present before the disease is really illness] very clear because we have to be able to diagnose it as soon as possible because it is the best ally to improve the rate of cure
“It points out Eva plums, hospital oncologist October 12 and President of Solti, one of the Spanish breast cancer research groups.
There are more than 100,000 women in Spain facing a metastatic cancer, but there are also men, remember Pilar Fernández.
“Breast cancer by 3% affects men. Although it is a very small percentage in relation to women, 80% of men with breast cancer are metastatic because when they are detected it is very advanced, they do not have
No type of prevention campaign, they do not have information, nobody has taught them or invited them to self-explode because many people do not know that man can have breast cancer since they do not have breasts, but they forget that they have breast, it is educational “,
Add the President of the ACMM.
This national association, the only one of this type in Europe, recognizes that it has a hard, but necessary discourse.
“Metastatic breast cancer has been forgotten in the social dialogue of the last years on October 19, it is a reality that, as it is not so beautiful, as positive and as satisfactory as the other cancer that is cured, you want to hide
. Everyone knows that on October 19 is the World Day against breast cancer, but few know that days before, on October 13, it is from metastatic breast cancer. They sell an absolutely positive message, ‘this today in
Day is cured, this is not a deadly disease, but forget this other part of the message: Women are still dying. We have just lost in eight days nine companions, none spent 42 years, “says Pilar.
The ACMM began as a support group on social networks. “Chiara Giorgetti was initiated, an Italian religious of Tuscany who resided in Barcelona and emerged by the difficulty in expressing us in certain support groups. Many support us, but our reality is his fear, in those groups we could not relieve it freely because neither We can not do it with the family, you save many things so that they do not suffer, and you need to vent with your sickness companions. The group began in 2017, we were 280 women and we started with social awareness campaigns with a few videos that were made viral. Our hashtag # Masinvestigación paramásvida was born and everything we collected, we started to donate to the investigation. In February 2018 we become an association and in December, Chiara died with only 33 years. ” The group continues to exist, now with 1,300 patients, outside the Association. They have also created a support group for family members and caregivers in social networks. “Family members wanted to enter our group, but patients prefer to keep it as our corner to vent.”
Pillar tells that the Italian religious bet very much about the investigation, “he was a format and in his honor we decided to create a research prize with his name. We have three editions and in the last 17 wonderful metastatic breast cancer projects have been presented.
Hospitals and research centers from all over Spain. On the 17th, they are delivered in Barcelona. If at a small award of a partnership with few resources, 17 projects are presented, what is happening? That there is investigation, there is a desire to investigate and lack resources,
A means, lack of financing “.
The President of the ACMM explains that for the selection to be rigorous, they have created an evaluating committee with the best oncological researchers in Spain.
“That is, it is not a decision ours and all our resources we dedicate them to endow that scholarship. This year we have managed to gather 180,000 euros, for us it is a barbarity because we do not have any kind of grant and it is fruits all of our effort and
From our work and the solidarity of many people who do events, concerts, markets … with all that we are creating a background for the next scholarship, we will take it out in summer. ”
His logo is a Phoenix bird, “which symbolizes the rebirth of our own ashes, we have to be reborn every day and reinventing us so that fear does not steal a second of life,” explains Pilar.
The colors come from the loop created by the American Metastatic Breast Cancer Association Metavivor.
“The colors are green, which means hope and healing; indigo, spirituality and life; and pink, which indicates that the metastasis started in the breast,” says the President of ACMM.
The President of the ACMM recalls with pain how some of these women have told them in associations and support groups that could not be counting that they had metastasis in the liver or lung because they stole hope for other patients, which if they wanted to talk
They got into a little room and put a coffee machine.
“This is tremendous, in the era of freedom of expression to us, not everyone, but a small collective of people are inviting us to be silent, although we are not going to shut up, the more they do not tell them more we are going to get up
The voice. This must be counted because of what is not spoken, does not exist and for many years it has not been talked about metastatic breast cancer. ”
Another of the criticism of the ACMM within that disproportionate positivity are the words that are used.
“We never use warmers: warriors, brave, fight, ‘If you fight you are going to cure’ … this message for us is devastating, women who have died has not been for not fighting, what do we have metastasis are not
Fighting? This is not a war, it is not a battle. In collaboration with other national associations and a pharmacist, we launched the project or winner or defeated, a spot led by Mabel Lozano with script by Paka Díaz that explains this idea very well
. Here there are no winners or losers, I have not heard anyone ever say ‘has won the battle against the infarction’, why are those terms used in cancer? “, Pillar asks.
For the President of the ACMM, “Valiente is one who exposes his life voluntarily, be brave when you have no other remedy have no merit, we would all like not to have this and be a ‘cowards’. This positivism has always surrounded to
breast cancer, you can see it in all the messages of October 19: the warriors, the brave, the fighters, the princesses … No. We are women who have a disease in our incurable case and that we do not have to win any battle
, the only battle we have to earn is that the investigation does not stop and that every day new drugs appear so that this disease can become chronicle and nobody else has to go through this hell that we are living, because we know that all the effort
That we are doing to many of us will not get us on time, but we do not want anyone to have to go through this, the generations that come back “.
On the importance of research plays special emphasis on doctor plums. “We have a good level of clinical research in Spain, pharmaceutical companies know that here works very well, that patients want to participate, that the level of medical training is the best in Europe, in my opinion. The level of recruitment In trials and the quality with which they are always in the first or second place worldwide, but we have to defend the investigation and ideas, those that may not have a direct commercial interest and are made with projects through Our research institutes of each hospital or with cooperative groups, such as Solti or Geicam in breast cancer, but it costs us very much because public financing is very scarce, younger researchers have it very difficult to get their first project and to return With the knowledge acquired when they leave out. At the end it gives the feeling that we work for others. Most of our young people end up making guards, consultations … They do it wonderfully well, but it could take more advantage of them. ” The specialist indicates that while we do not believe that the investigation is transformed into health and that it has seen in the pandemic – is the basis of absolutely everything, it is not going to be given importance, translated into funding and enforce the budgets of the State, public-private collaborations, etc. Towards the investigation.
“We are not afraid, we just want to live, is that we have nothing to lose, we have already lost everything, we are trying not to lose my life. It has nothing to do with a breast cancer or a metastatic breast cancer,
If someone knows it, it is me that I have had two cancers of the curable calls, that I end up. But the metastasis is a completely different reality because you know that now you will not cure, because you know that your life and your survival depend on
The new treatments that come out and if those drugs do not reach you as well as the investigation progresses. ”
It refers to pillar in one of the claims of this association: shorten the bureaucratic procedures in Spain for the approval of these drugs.
“We have been fighting for 5 years and claiming research and when new drugs appear we find that they do not approve them, which is devastating, because if you have nothing to wear and you die is tremendous, because you sit and wait when there is nothing, no
Treatment for you, but if you have it and above it does not arrive it is much worse. ”
The President of the ACMM says that we are going with two years of delay with respect to the rest of Europe, which while these treatments in Europe reach 80% of the patients here just benefit from 56% and that when approved in Spain it is done
With many restrictions: “Some drugs that in Europe are approved on second line, the proposal here in Spain is to approve them in the fourth. It means that to have access to that treatment you have to have failed another three. The easiest thing is that when you
Arrive the treatment line in which you are going to put you already in a very advanced state. ”
One of the last examples in this regard is the drug Sacituzumab Govitecan (SG), marketed as Trodelvy by the Gilead company.
Approved in October by the Europe Agency of the Medicine (EMA) for the treatment of patients with unresecable breast cancer (can not be removed by surgery) or negative triple metastatic that have received two or more previous systemic treatments, at least one of them for
Advanced disease.
While in Europe it has been approved on second line, in Spain we must ask for patient by patient, as a compassionate use when several lines of treatment have already failed.
“It is true that with the Covid the medication agency (AEMPS) is doing a good job and has been surpassing in approvals, the staff is what is and do not give supply, but my obligation is to ask for more. Once approved the SG
For the EMA, we must install the Spanish health authorities that please put the batteries so that the drug is refundable to all patients, which soon packed the price so that it can be used, “says Javier Cortés, Director of the International
Breast Cancer Center (IBCC), associated translational investigator of the VALL D’Hebron Institute of Oncology (VHIO) and one of the oncologists with more experience in breast cancer in the world.
The breasts grow, harden and even hurt at different times, such as pregnancy or when a woman ovulates, according to the level of hormones. That happens because the cells of the breast have receptors for female hormones: estrogen and progesterone. There are breast tumors that preserve hormonal receptors of their normal cells and are called hormonal tumors, and there are breast tumors that lose these hormone receptors, the estrogen receptor and the progesterone receptor. “And then there is a third marker, HER2, which is a protein that is in the membrane of the cells. All breast cells have HER2, but sometimes there are tumors that instead of having the normal thing, they have much more than normal . To the first we say that they are negative HER2 tumors and those who have much more than normal we say that they are positive HER2 tumors because they are overexpression of Her2. Therefore, we have positive HER2 tumors, hormonal tumors and a third type that is when the tumors. They have no estrogen receptor or receptor of progesterone or Her2 overexpressed, but normal HER2, and we call them triple negative tumors. There are many types of triple negative tumors, but an important majority have characteristics of aggressiveness because they activate cellular characteristics of great proliferation “, Develop Javier Cortés.
This type involves approximately 15% of the diagnoses of breast cancer.
Dr. Plums explains that advanced breast cancer negative cancer has several scenarios.
“Number 1: Patients who have not yet received any chemotherapy and have a marker that makes us think that they can be sensitive to immunotherapy treatment. That marker is the expression of a protein called PDL1 in the tumor and this happens between a 35
-40% of patients. These patients with PDL1 expression have to receive chemotherapy together with immunotherapy and with this we improve time until the disease progresses again and also reduces the death time. And the two immunotherapies approved in this scenario are
Atezolizumab and Pembrolizumab are two similar drugs. ”
“Scenario 2: Metastatic Triple Patients, are those in which the expression of the PDL1 is negative, therefore, immunotherapy does not work and it is necessary to use chemotherapy and chemium on the first line sometimes occurs with other drugs, for example
With antiangiogenic, either chemotherapy alone, which is what we have done for a long time. Scenario number 3: From the triple negative patients More or less 15% have genetic mutations that are germinal, that is, they can come in accordance with the
Family, especially are mutations in two genes that are called BRCA. When these mutations exist, drugs that are PARP inhibitors can also be used, which make patients go very well, it is an alternative that is not a chemium. ”
Plums detail, finally, the scenario 4. “There may be patients who have already received one or two lines of chemo, which are again getting worse and this is where there is a new drug, Sacituzumab Govitecan (SG), which has shown that it is
Superior to conventional chemotherapy in terms of time until progression (that is, the disease worsens) and also the risk of death. ”
Metastatic negative triple breast cancer is the most aggressive, its prognosis is very bad, such as a lung or stomach cancer.
“We are talking about pretreated patients, they have metastasis and have already given them at least one or two chemotherapy treatments. At that time, following with more chemotherapy, they have a survival of 6.9 months of medium, that is, half of the
Patients have more than 7 months and half less than that time. With this drug (SG) survival practically bends, we speak of almost 12 months: half have a survival of more than a year, half less than a year ”
.
Cortés explains that this is the median, “but then there is a tail of patients who can live 2, 3, 4, 5 years and sometimes this tail is greater. It is not only the median, to go from 6 to 12 months to
The best is not a big deal, but maybe we already have 5% or 10% of patients who already live 3, 4 or 5 years. You have to go by working on that line, although we have a lot, very much. That yes,
In metastatic triple breast cancer are the best results we had ever obtained. ”
In fact, the oncologist refers to the Ascent study, which studies the drug in these second, third or fourth treatment line, and indicates that if before “there was more or less 10% of living patients two years, with SG
We are around 25% of alive in two years. These increases are important because of these patients maybe there may be 5-10% who are alive to 5 years, then they are even low figures but it is that before they were dying
everybody”.
What is and how does SG work?
“It is what we call immunoconjugate, or also called Antibody Drug Conjugate (conjugated drug antibody), that is, it is a monoclonal antibody attached to a bond to chemotherapy molecules and this monoclonal antibody sticks to a membrane protein called TROP2,
It is the door to which it sticks and that works as a Trojan horse: the immunoconjugated is shown to TROP2, the immunoconjugged TROP2 complex gets inside the cell, the link is broken, released chemotherapy and chemotherapy plays its antitumor role
“Dr. Cortés relates.
“It works as a kind of vaccine that transports a chemotherapy. The vaccine recognizes these proteins that express tumor cells and not healthy (TROP2), joins them and that union is capable of entering the tumor cell, and once inside
It is released the chemo that was stuck that ‘vaccine’. It does not affect the cells of healthy organs, that is why this drug is more effective than conventional chemo and is also well tolerated. Not only does it exist for the negative triple, for example the
There are for HER2 positive tumors, where they have been a revolution in the year 21, “clarifies the doctor plums.
The oncologist recalls that the drug SG does not avoid death, but delays that moment.
“To avoid death we must give those drugs in patients who do not have metastasis, and for that we need studies in early illness, in adjovancy. In that sense, it should be noted that there is already a SG study on the first line of treatment, we only need
A few months to see results. In addition, the other Spanish breast cancer research group, Geicam, is carrying out the Sascia study in which they are giving, in front of conventional chemium, SG to patients without metastasis that have a risk of relapse.
The idea is to demonstrate that this drug can also reduce the risk of relapse and, therefore, cure more patients. Not only for the results for triple metastatic negative, but by the doors that open for a lot of situations, this drug opens many
hopes “.
“There is a very nice field that has presented a preliminary work at the San Antonio Congress, in December, and is trying to detect early. Patients who are carefully diagnosed, that is, they do not have metastasis, try to detect as soon as possible those that they will have a relapse and that can be done by blood test. When a patient operates, he takes off his tumor and receives his chemotherapy, his radiation therapy and passes to revisions, we are seeing, and there are some data, that the CTDNA, means the DNA from the tumor that is circulating in the blood, when it begins to detect in the blood, it is predicted which patients will have an imminent clinical relapse, that is, in which we are going to start to see some injury in the bone, In the liver or in the lung. What needs to be done is now demonstrate that treating these patients very early impact on prognosis and effectively reduces the risk they have to die, “explains Dr. Plumo s.
The specialist also highlights immunotherapy. “A 35-40% of approximately patients are candidates for immunotherapy because they express PDL1, but they could also some other patient, regardless of the PDL1, who had the opportunity to receive this. Immunotherapy in general are drugs that what they do is enhance and activate and activate and Awakening a lot to the immune system that everyone has so that this own immune system, lymphocytes, act against the tumor and fight against the tumor and eliminate it as they eliminate the germs that come when we have a catarro or an infectious diarrhea, we have ourselves We cure because the immune system works and ends with these germs. To enhance this strength of the immune system and give these drugs together with Quimio is another part, on the first line works and is a treatment that is already standard and also works when we give it in early illness Along with chemo, even in patients who have not yet been operated on the tumor, that is, we give the treatment of chemo and immuno and when the probabil is operated To heal is much greater than if we give only chemotherapy and it is another niche where immunotherapy is in indication as well. All this has appeared in the last two years. ”
Dr. Cortés points out three great points of view in the investigation of these tumors.
The first, immunotherapy and immunotherapy combinations;
the second, the new immunoconjugates, “new Trojan horses”;
And, in third place, knowing the molecular biology of tumors, better drugs that block the specific alterations that present some in combination with immunotherapy and / or with these ‘Trojan horses’.
What is needed, as the ACMM claims, is that these new treatments come as soon as possible to patients and without so many restrictions.
One of these perfect candidate patients with drug SG is Hilda Siverio.
The history of Hilda gives for a Netflix series with several seasons.
This 50-year-old canaria relates the dramas of it alternating jokes and laughter with tears.
“You do not scare you, that I pass from one thing to another.”
Pretty well-known in his native tenerife and networks on the page he created in 2015 on Facebook Sack a smile to cancer, as well as on his Tiktok account, who discovered in confinement, where he already has more than 700,000 followers, his story begins
In 2014 when he was pregnant with his son Richard, he shows a bulge on his chest.
Hilda already had two daughters of his first husband, Valeria and Gabriela (currently 19 and 15 years, respectively), but his brother Ricardo had committed a year earlier and decided to bring to the world his son, he did not want to abort or undergo any treatment
Until the child was born.
When they tested him and confirmed that it was a carcinoma, he provoked delivery a week 34. “Three tumors in the left breast with micrometastasis in the lymphatic area and two on the right. I did not see my baby until 21 days because they were
Various doing evidence, they made me the mastectomy, began with the chemium, the strongest, they also removed the ovaries and the tubes … “, Rememora Hilda.
In these years, the family and personal misfortunes of all kinds have happened, among others the diagnosis of their current couple of a strange cancer or the serious complications after withdrawing the prosthesis, which had been put on a medical recommendation after its double mastectomy,
That in countries like France they were withdrawn by provoking ganglion cancer.
The pandemic and confinement are crossed, which have not helped any patient, and in February 2021 the oncologist of him, Dr. Isaac Núñez, did not give him good news.
“I told him ‘Isaac, I know I’m dying, what I want to know is how much time I have left’. He told me that year and a half or two years, and that could vary, which is what is attempting with the treatments.
I have already spent a year, “says Hilda, which since then receives palliative chemotherapy.
This January 3 the results of his last PET indicated that the disease has not stopped (in fact there were two new tumors of a certain size): lymph node metastasis, bone metastasis in the skull and a cancer that has mutated a triple negative.
Before Christmas, Hilda entered badly and sedated her.
He confesses that euthanasia had already been raised, but he woke up from the sedation, something that surprised the doctors themselves, “and I understood that I have to let life follow his course, when have I caught the easy way? I said to
My daughter Valeria who come back home was going to help them see day by day and arrive a time when they prefer, before seeing me suffering so much, that mom leaves and is when they are going to feel tranquility. ”
“It has helped me a lot of my way of seeing life, from what I am, of the laughter that I am, that I laugh at everything and I am still happy.”
Hilda says that while she was a thread of life she is going to fight “like a Jabapa”, especially fighting and asking for research, as she has been doing eight years old.
“If it does not come to me, that at least no child is left without a mother and no mother stays not seeing her children, if it is not for me, it is why they come behind her.”
Again, the admirable generosity showed also pillar and that moves these women.
Hilda has ended the options, the oncologist of her has applied for the drug Sacituzumab Govitecan for compassionate use and she continues to give lessons of how to live.
“Of course it’s a bitch and it’s hard and it’s fucked up and of course it’s a shit that you’re dying, but what are you going to do, are you going to be crying until the day of your death? Are you going to be saying go fuck the
Life? No, I get up and how I’m breathing, I live today, and tomorrow you’ll be seen here, here are all borrowed, the funny thing is that people do not realize, look at you in plan ‘the poor one, what is happening to you
‘, and I say’ does not wait, that I have a date, but you do not know if you can be the one that tomorrow you do not follow here, you run over a car crossing the street or suffer an ICTUS. I prefer to die than waste your life and is lost in
The moment you stop living. ”
