From Chile- My Journey with WM: Living One Day at a Time with Faith and Hope
Diagnosis: February 2014
Treatments I have had:
1) Year 2017-2018: BDR (8 cycles of Bortezomib (Velcade) + Rituximab + Dexamethasone.
2) Year 2022: B&R (6 courses of Bendamustine + Rituximab)
By this time, I have been untreated for exactly 2 years.
Hello, everyone! My name is Jeannette Quiroz and I’m from Chile. I’ll soon be 48 years old, and it has been 11 years since my diagnosis. Living with this disease has taught me a lot.
I first shared my story of hope in 2019. It was published under the title “A Waldenstrom’s Pregnancy”, and indeed it was. My little son Mateo was born the same year of my diagnosis. He is now 10 years old and in very good health. He became a light of
hope for me. Bailey, an Akita Inu, joined our family at 3 months old. Now he is a giant dog who gives us a lot of joy in our home with Mateo.
My disease has been tremendously well managed and bearable thanks to my son, along with all the support I have received from IWMF; my treating physician, Dr. Jorge Castillo from Dana-Farber, Boston; and my local doctors in Chile, currently Dr. Silvana Vasquez.
Since I wrote my story in 2019, I have experienced painful and complex moments, such as the passing of my mother, my primary caregiver, in June 2022 at the age of 64. Following her funeral, I was hospitalized before my second treatment because my IgM levels were approximately 9,400, blood viscosity was 6.2, and total proteins were 11. Because I have blood hyperviscosity syndrome, I had 3 plasmapheresis processes, and then immediately underwent chemotherapy with six cycles of bendamustine and rituximab from July to December 2022.
Thank God I tolerated my treatment very well. But, unfortunately, my partner of 11 years (Mateo’s father) and I broke up during that time.
At the end of my six cycles of chemotherapy, my indicators started improving slightly. I spent most of 2023 with an IgM above 3000, but at the beginning of 2024, my IgM started to decrease more significantly. My last results in December 2024 showed a decrease of my IgM to a current level of 574. So, I am very happy with these results, and I hope to continue this way.
In 2019, I joined IWMF as Support Group Leader for Chile, and I participated at the October 2023 International Affiliates meeting in Amsterdam, and in September 2024 in London. Participating as a Support Group Leader for my country is something that fills me with pride, and I feel very committed to bringing education and access to the latest treatment information to patients in Chile.
My son Mateo accompanies me at every meeting I have had the opportunity to attend. At these meetings we share with the other leaders of international support groups, and I have met very nice people, along with the support of Michelle, Beth, and Hannah from IWMF.
I hope that my remission process will last a long time before I have to start a new treatment. Immediately after my second bendamustine and rituximab treatment (described in my original story of hope), my stem cells were collected and cryopreserved for a future autologous stem cell transplant, if the conditions allow me to do so.
I hope that my story of hope will be useful for many other patients. I invite you to never give up, because although we have this disease, and it is a cancer without a cure, I believe that we can have a full life and find happiness day by day, enjoying every moment.
Jeannette Quiroz Gomez
Support Group Leader
Chile
Original Story of Hope – Jeanette Quiroz: A Waldenstrom’s Pregnancy
Yes, such a pregnancy is possible, and here I am, pictured with my son who is almost five years old and who is the joy of my life.
It all started in January of 2013, when I was 35 years old. I went to see an endocrinologist because I suspected I might have diabetes. Rather than diagnosing diabetes – which I did not have – the doctor found some abnormalities in the A/G (albumin/globulin) ratio – 0.9. He told me, “you have inverted proteins in your blood, and that is not good.” He ordered several hepatic tests to check if my digestive system was functioning well, and found that my liver was slightly larger than normal. The doctor advised me to stop taking contraceptives because that could be a possible reason for my inverted A/G.
2013 was a year with big changes for me. I had been working for twelve years and I was leaving my job in order to start my own business. I went to Europe for one month and I had a great time. Everything seemed to be fine.
A year went by, and I was still worried throughout that time, because I was remembering the doctor’s words about my inverted proteins. Since I am an engineer, I thought this cannot be good. I went back to the doctor in January 2014 for routine tests, and the results came back with my A/G ratio even lower than the previous year’s (0.7).
The doctor was concerned with these results, and ordered a series of additional tests such as an MRI of the liver and other hepatic tests. He did not find anything irregular, and after two weeks he told me this was not his area of expertise and that I should see an immunologist or a hematologist for an evaluation.
January gave way to February 2014, a month during which most of the doctors in Chile were on vacation. But I found a hematologist willing to see me. He ordered several additional hematologic and immunologic tests. When he received the initial results, he told me that it was possible that I had Waldenstrom’s macroglobulinemia but it was rare in my case because it usually occurs in older people. He ordered a bone marrow biopsy and a protein electrophoresis examination of my blood, and confirmed that I had WM. I believe I landed in good hands, because he calmed me down and explained to me that despite my initial concerns, this cancer responded well to treatment, although there was no cure.
Those days were very hard for me. I could not believe that this was happening to me, but I carried on with my life, having faith in what the doctor had told me: “If you do not have symptoms, we have to just watch and wait.” As an engineer, this was something very difficult for me to do – waiting without doing anything.
My hematologist/oncologist sent me to do a PET scan to make sure that other organs were not compromised. Prior to the test, the nurse insisted that I make sure that I was not pregnant, because in order to perform this test they needed to inject a small dose of a radioactive contrast substance.
It was May 2014, and I was in Santiago taking a health studies class, to become an auditor. My Partner, Miguel, traveled to be with me for the PET scan. The night before the scan I went to the pharmacy to buy a pregnancy test to be sure I was not pregnant. To my surprise, it was positive – I was pregnant! There was a little human being inside me. And at that moment, I had no way of knowing that this baby would become my greatest joy in life.
When I saw the results of the pregnancy test I cried. How was it possible, I wondered, that in addition to having bad news about my health I had more news telling me that I had to continue on, that I had to fight not only for myself but for this precious new life that was growing inside me?
After crying a lot, I became more calm, understanding in some way God’s plans. He was testing me. Alongside my health problems, he was sending me a beautiful gift to show me how much he loves me.
Immediately thereafter, I changed my oncologist appointment to a gynecologist, to confirm my pregnancy. From then on, I commmitted to remaining strong and to fight for my pregnancy. It was a very difficult time. I was feeling happy and hopeful but at the same time afraid and worried about the future. I was trying to be positive, but always found myself thinking about all the “what if’s”.
During the seventh month of my pregnancy – week 29 – I had a feeling that something was wrong. I had some red spots on my hands and I had an excess of protein in the urine. The doctor ordered me to be hospitalized immediately under continuous observation. I was hospitalized on a Tuesday, and in the following days my hepatic tests worsened each day. I was nearing a hepatic collapse. Subsequently I had a C-section on Friday of that week, and my precious Mateo was born the 31st of October, 2014. His weight at birth was only 1.6 kilos (3.52 lbs.), and he was very weak. He needed a respirator to assist him in breathing, and I was unable to breast feed him. After thirty days during which we both struggled, he grew strong enough to be released from the hospital, and my hepatic irregularities returned to normal.
Time passed, and while Mateo thrived, I remained slightly anxious because I was unsure what WM had in store for me. Learning of the International Waldenstrom’s Macroglobulinemia Foundation proved to be of great benefit to me. There I found a great deal of emotional support from other patients, and got to hear their stories and acquired a lot of information about the illness. There I also found the name of a WM specialist (hematologist/oncologist) in the United States who became like an angel sent to me. I wrote him an email telling him that I would like to see him to be evaluated, and to see when I could begin my treatment. I was not doing so well – my IgM had risen to 6000 and higher (as when I was pregnant).
In August 2017 I began planning to go to Boston to see the WM specialist. But before that, I went to see another doctor in Santiago, Chile, to get started with my treatment. He told me that I could not travel in my condition and that I should start treatment immediately. My blood thickness was 6.2 and my IgM around 6700. I was feeling very weak, and I canceled my trip to Boston. I was lucky enough to be in communication with the WM specialist from Boston who, via e-mail, was willing to provide guidance as to the best course of initial treatment for me. I was also lucky to find a doctor in my home city, Concepcion, who was willing to follow the course of treatment recommended by the WM specialist.
Before starting chemotherapy, I had two plasmapheresis treatments (a method of removing harmful proteins from the blood) because my blood was very thick and contaminated with IgM. With this treatment my IgM went down to 4500. With these numbers, my initial treatment with BDR – (bortezomib, dexamethasone and rituximab) could begin. My body responded very well to the treatment, but the blood counts were improving only slowly. I finished the first four cycles (over four months) and I traveled to Boston for a consultation with the WM specialist in person, who continues to this day to monitor my progress.
By December 2018, I had completed eight cycles of BDR, consisting of the original four-month treatment, followed by four more infusions in the subsequent year.
Today I have recovered my strength, and my blood numbers are under control. I have a precious child, who is the reason for me to fight every day to be well, in order to be with him as much as possible and for as much time as God will grant me.
I am eternally grateful for all my blessings, for my family, for my mother who prays for me every day, for Miguel who is my life partner, and for all my friends who have accompanied me on this journey.
They all have sustained me, and I credit them and my physicians for this miracle in my life – my beloved Mateo.
Jeanette Quiroz
Concepcion, Chile
September, 2019