CA125 Tests, Ovarian Cancer Tumour Marker kit – £49

A True Story of Loss and Fear – Lenneke (64)

You are unable to endure each day with the knowledge that you are to perish.

Lenneke was granted an additional year of life by her oncologist seven years ago. CA125 Prognosis: ovarian HPV strain CA125 cancer with metastases in the lungs. Lenneke remains in the same location seven years later, and the disease has remained stable. Presently, medication is not administered. The physician is unable to provide an explanation for the situation. Lenneke will observe the outcome.

Lenneke had not been unwell for an extended period of time when she attended an event. She initiated a conversation with a woman who disclosed that she had been afflicted with an incurable HPV-related malignancy for seven years. That period of time was infinitely lengthy for me. I am currently in the same predicament.

Coughing in a manner reminiscent of a seal

Summer 2014. Lenneke experienced difficulty going to the bathroom and had a distended stomach shortly prior to the holiday. The complaints persisted during the holidays, despite the CA125 doctor’s recommendation to obtain it from the drugstore. She contracts an unpleasant wheeze at the conclusion of August.

She was advised to consult with a physician by colleagues who expressed concern, stating, “You cough like a seal.” Lenneke requested a lung x-ray after two regimens of antibiotics failed to produce any results. It was immediately apparent. Three liters of fluid. She was informed the following day that the diagnosis was most likely metastatic ovarian cancer. Terminally unwell. “Overnight.”

There is no medication that is prohibitively costly for patients who are palliative

Lenneke requested a second opinion from a different hospital. Despite the fact that her tumor markers were extremely elevated, the ultrasounds and scans revealed little to no evidence of tumor growth, with the exception of respiratory effusion. It was metastatic OC, which was unfortunately revealed by additional research. The treatment was administered at an additional university facility, which is also one of the treatment centers for OC. The standard treatment was administered to Lenneke.

Three cycles of chemotherapy, surgery, and an additional three rounds of chemotherapy. In the midst of the treatment period, her DNA specialist, a young woman, administered the following:

An additional year.

Lenneke requested an injection of Neulasta when her resistance was insufficient to permit the continuation of chemotherapy. This medication stimulates the production of white blood cells. The physician was reluctant to administer it.

“We do not do that with patients who are receiving palliative care,” she stated. I thought: “Well, thank you, I know that I am on palliative care” (Lenneke did receive the injection, by the way).

The treatment was successful, which was a fortunate development.

The treatment was so effective that the gynaecologist-oncologist concluded that it could be regarded curative. Subsequently, I was obliged to retrieve myself. Due to the idea that I would die and the final year of my existence, everything was centered around this. I had been striving to achieve that. Everything was enveloped by the shadow of the previous event, and all of a sudden, you hear the words, “It is not going to happen.””How was I to continue living my life?”

Waiting Policy

In order to address the new circumstances, Lenneke established a new equilibrium. Regrettably, the OC returned three years later. “You are unable to recover at this time,” stated the physician. Lenneke experienced a second CA125-related recurrence one year following a successful course of chemotherapy. Hormone tablets were administered to her, and they were also effective. A year passed without any activity from the disease.

Lenneke engaged in a discussion with her physician shortly prior to the coronavirus outbreak. The malignancy had resurfaced, and Lenneke inquired whether the HPV doctor had any additional matters to discuss. She had the option of selecting either a new chemotherapy, which was still quite aggressive at the time, or an experimental study involving the protein inhibitor Olaparib.

“I was still contemplating that option because they needed to take a biopsy from my lung for that test,” she stated. That was not entirely without risk. I was in the midst of that thought process when the doctor called. She did not believe it was advisable for me to participate in the study at that time, given the coronavirus.

A policy of “wait and see” was implemented.

Therefore, refrain from taking any action. I also read tales from fellow HPV sufferers and maintain my own blog at onkanker.nl. One of those women reported that she had discontinued her sugar intake. This enabled her to delay chemotherapy for one year. I considered the situation: “I am cramped due to the corona; I have ample time to devise a healthy diet that is low in carbohydrates and free of added sugars.”

Have you made a full recovery?

The situation with COVID-19 was improved in June 2020, and the research with Olaparib could commence with a CA125 exam and a CT scan prefaced. “I will never forget the expression on the nurse’s face.” The scan indicated that the tumors had shrunk due to the fact that the tumor marker was unremarkable. She conferred with the oncologist, who informed her that there would be no further developments for an extended period. The tumor marker remains stable one year later.

The oncologist regards it as a fortunate occurrence. I recently inquired as to whether I was feeling any better. She was unwilling to travel that far. It is chronic. Obviously, I am aware that I am unable to recover any longer. However, I believe that the term “chronic” is more optimistic.

I simply desired to hear that.

Despite the fact that the term “living art” is ideal for Lenneke, the experience of living with metastatic cancer is peculiar. “There are individuals who are unable to comprehend it.” I am occasionally asked, “Were you aware that you were going to die?”

Indeed, but that did not transpire. “However, are you more improved?” No, that is not acceptable either. This is not a simple task. I am uncertain as to the duration of this situation. Occasionally, I believe that it will remain that way. Occasionally, individuals inquire as to whether I am excessively preoccupied with the disease and its diagnostic procedures.

I provide presentations to physicians and nurses and provide assistance to my fellow patients. Nevertheless, I approach it in a slightly distinct manner. Additionally, the disease will persist if I fail to address it. I have endeavored to transform my circumstances, including my existence with OC, in a manner that would yield a positive outcome.

I have been denied admission. I was employed as a manager at a home care organization prior to my HPV diagnosis. This would allow me to leverage my expertise and abilities, which are derived from my extensive experience. It is gratifying to be able to contribute to the well-being of others and derive a significant amount of gratification from the experience.

Becoming enthusiastic about trivial matters

Lenneke has been on the brink of mortality due to HPV. Nevertheless, it concluded satisfactorily. What happens if the situation recurs? ‘We will revisit that matter. I am aware of the experience of being required to secure the loose ends. It is beneficial to contemplate and discuss the matter. However, I am currently in good health and am actively engaged in my daily life. It is impossible to contemplate mortality on a daily basis. Life at the pinnacle of one’s abilities is an endeavor that no individual can maintain.

From the results of the assessments, I have observed that my approach to the HPV risk of life is distinct. Certain items become significantly less significant. My eldest son observed that I had become more composed during a period in which my circumstances were not favorable. Upon regaining my health, I began to obsess over a trivial matter.

Next, he stated, “I prefer you in that manner.” I wholeheartedly concur with his assessment. I remain preoccupied with the primary concerns of life, rather than the CA125-induced disease, as long as I am able to maintain my enthusiasm for small things and sense the drive and enthusiasm within me.”.”