Who is Nizar?
Nizar Palayad is a loving husband and an amazing father to our 3-yr old son Zach. He is a hands-on, diaper-changing kind of dad, and the type of husband that does not hesitate to be sweet and give affirmation. He is a doting and caring son and brother to his family, a wonderful in-law to my own family, a true and dependable friend, a faithful and loyal brod, a valuable colleague, and so on - you catch the drift. He is quite special. Quick-witted and hilarious, he loves to have a good laugh; and at the same time he is very grounded, intelligent, commands and exudes leadership, values integrity; he gives sound advice to many; he has a soft and kind heart especially for the needy. He is the type of person that would sacrifice what he has for the welfare of another, always looking after others before himself.
He is so full of life. He is full of ambitions and dreams.
More than anything else, however, he wants to grow old with his family, and be there especially for Zach as he grows up. Nizar wants to witness all his milestones, teach him how to ride a bike, play basketball, maybe (if I approve :) ) teach him how to responsibly drink a few bottles of beer, be there for him through heartaches, through all his ups and downs, successes and failures. Nizar ultimately dreams to someday walk him down the aisle at his own wedding and guide him as he becomes a father himself.
It was a carefree and blissful 1.5 yrs after our son (Zach) was born, before Nizar was diagnosed with cancer.
Nizar's Condition(s) and Treatment
For details on the symptoms and events leading to the diagnosis, please read through to the next sections.
July 2017, Nizar was diagnosed with
(cancer of the inner
lining of blood vessels). This is a very rare type of cancer. Many oncologists
and doctors would not even see one case in the course of their practice.
Nizar's subgroup is even rarer, because the location is in the
heart (cardiac angiosarcoma). I didn't even know that one can get cancer in the heart - I had never heard of any case like it.
January 2018, after a week-long confinement in the hospital, Nizar was diagnosed with
another rare condition - autoimmune hepatitis.
(How unique Nizar is!). This is an autoimmune
disease where his immune system recognizes his own liver cells as an
enemy and attacks the liver. At the time it presented itself, his liver
enzymes were over 10x the upper limit. Nizar's autoimmune condition is
under control right now, with the help of daily medication (steroids).
This is a chronic condition, and we don't know when it will flare up
again, but at present we are just grateful we can let it go so we can
deal with his other affliction.
cancer is another thing. It is called the "beast" by all that know it
well because it is very aggressive and resistant to treatment. It has poor prognosis, and it is only by God's grace, through
faith, that Nizar is still around after nearly 2 years.
For almost 2 years, the cancer was "stable" and confined in the heart - it
was controlled by treatment (chemotherapy). He has had 6 treatment
protocols already (7, if counting the very first administered drug that was immediately
terminated due to anaphylactic reaction). The tumor will shrink
initially, then stay the same
in size, and then eventually it progresses as it becomes resistant to
the chemo drug/s. For Nizar's case, because of the location, there is a need to change chemo protocol each time the
In January 2019, he was again confined in the hospital, this time for 2 weeks, for acute respiratory failure (from high-risk pneumonia). His immune system is compromised because of the chemotherapy and steroids, and he easily caught some virus despite taking extra precaution. Nizar's oxygen saturation dipped to 70's (a normal person's is at 96-100) without oxygen support (he had to wear a bipap mask/ machine), and for days his body showed no signs of breaking the high-grade fever that was consistent at 39-41 ˚C. Just when it seemed too late to start seeing improvement, God once again showed His mercy as our ultimate Healer, and Nizar steadily started recovering.
His subsequent scans showed significant clearing of the infection in the lungs and we thought it was all good. However, in the most
recent CT scan done on April 11, 2019, we received the unfortunate news
that the cancer which was previously controlled and confined in the
now metastasized (spread) to his lungs. The disease is now Stage 4 cancer, and is more difficult to treat given that we now have two sites to address. How the cancer in the heart responds to treatment may not be the same as how the cancer in the lungs responds to the same treatment. We now need to be equally vigilant and aggressive, if not more, when it comes to getting continuous treatment and preventing any showstoppers.
we have already exhausted many of the known lines of chemotherapy
treatment for this type of cancer, we now have limited options left -
only a couple more protocols for now. And these were put off in the
beginning because of the extremely high costs, but now we have no choice
but to try these in order to keep Nizar alive. And with the help
prayers foremost and donations, we continue the battle and we continue to hope that we will eventually fully eradicate this beast. We know that
nothing is impossible with God.
At present, we only have chemotherapy in the treatment plan. We do not
have the advanced technology here in the Philippines for precise radiation to the heart, which is a
moving target. We do not have clinical trials here for this type of
cancer. Many of the medical advancement related to treating this cancer
are not yet here. And we do not have the means to get treatment abroad.
We are currently exploring the possibility of adding immunotherapy to the treatment plan for Nizar. We sent his tumor (paraffin blocks and slides) for PD-L1
testing locally and we get the results in a week or so. If it turns out positive, then we can explore this option if in case Nizar
is a viable candidate. We are also exploring getting DNA sequencing done
abroad (not available here in PH), to see what other targeted treatment
may be administered. All are not without soaring costs.
Expenses for Current and Upcoming Treatment
His current protocol costs P300,000 PER MONTH (approx. US$5,800/ month). If this does not work, or stops working, we will move to the next protocol, which ALSO costs P300,000 PER MONTH. And we need to keep him on treatment for as long as it takes.
Current Protocol - Sorafenib (Nexavar)
started with sorafenib (Nexavar) last Thursday April 25th where we bought 40
tablets first (good for 10 days) to test the waters and see how Nizar's body
will take it.
This is an oral chemotherapy protocol, where no hospitalization is required. He needs to take 4 tablets per day (800mg full dose daily).
1 tablet costs P2,500, so that's P10,000 PER DAY (approx. US$200 per day).
And that's P300,000 per month (30 days).
Next Protocol - Bevacizumab (Avastin) + Temozolomide
sorafenib does not work, or stops working, the plan is to switch to
this other protocol. Frankly, for now, this is the only other protocol
left that is established in our plans. I am hoping we get more options
along the way.
is a combination therapy. Bevacizumab (Avastin) is administered through
IV line in the hospital as outpatient, while temozolomide is an oral chemotherapy (tablet form).
This is also costs P300,000 per month.
WE NEED YOUR HELP
years of hospital visits and treatment has drained us financially, even
with the help and generosity of friends, family, colleagues.
We do regularly apply for PCSO medical assistance, but their budget has drastically gone down. The amount they give is equivalent to 2 tablets only -- good for 1/2 day of medication.
were able to get through past treatment with God's provisions. He is our great Provider. He touched the
hearts of many people, including Nizar's beloved compassionate employer, and used them to extend financial help to us. Some of them we barely know or have had nearly no
contact with for years.
And God continues to bless and provide - not just for my family, but for all of us.
Nizar may look able (and to a good extent he is, all praise to God!), but the fact is, it's been nearly 2 years that his body is being beaten up by chemotherapy, countless needle insertions and pokes, medication. His body gets weary. But Nizar continues to battle and brave through all the physical pain, side effects, adverse health conditions, mental and emotional pain, just to have that chance to be with his family.
Bank of the Philippine Islands (BPI)
Acct name: Nizar Jameson G. Palayad
Acct number: 9609-0319-96
Banco De Oro (BDO)
Acct name: Ma. Cristina M. Barretto
Acct number: 007640028318
And if possible, please fill out this form after you have donated (if direct deposit), as we would like to keep track of donations:Link --> Donations for Nizar's Medical Expenses
Message Ching Barretto-Palayad at +639175707663 (Sms/ Viber/ Whatsapp) or Facebook Messenger for any questions.
Thank you from our family - Nizar, Ching, and Zach. ❤️
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So much has happened since we learned of Nizar's condition almost 2 years ago. I will save more of the details in future posts, and here I will focus on the events leading to the diagnosis and treatment plan.
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Nizar looked like the picture of good health. He was a new father and he was great at it. If there is what we call "mother's instincts", he surely had the counterpart "father's instincts". He and Zach were connected, like it was him that carried our son for 9 months and gave birth.
He was at the prime of his life at 33 years of age, a licensed engineer and was enjoying his job working for an international company. He had a lot of possibilities and had many plans of building a good life for his young family of three, and our beloved families.
In May 2017, he fell sick during training abroad. It was only a few days into the training when he complained to me about non-stop vomiting. He thought it was because of something he ate there. A few more days and the vomiting had stopped, but was replaced by a bloated stomach, fatigue, and breathlessness. We were still thinking it was because of some seafood (perhaps not well-cooked) that he ate. His colleague gave him over-the-counter medicines for quick relief, but the symptoms persisted. He was however still committed to finish the job he was sent to do, and he did not send me pictures of his "bloated" stomach, so I did not realize how bad it actually was until I finally saw him when he got back in Manila. He messaged me when he was boarding the plane that we should get it checked when he arrives - and he rarely initiates doctor visits - so I knew he felt unwell, but we were not prepared for the gravity of the situation.
The moment he set foot back in our home (straight from the airport) and I saw him, we both knew we needed to get him to the hospital immediately. He just put his baggage down and off we went. I was driving and I was trying to remain as calm and clear-thinking as I can. His abdominal area looked like that of a full-term pregnant woman; his thighs, legs and feet were that of an elephant (edema); he had difficulty breathing (dyspnea) and could not take even a few steps without being short of breath. I had to put my arm around him and assist him in walking, slowly, step by step.
It was a few tests and an ultrasound later in the ER when it was determined that he had ascites (abnormal build up of fluid in the abdomen).
From ER to Surgery
In the ultrasound room, I looked ascites up, and read that it was mostly associated with liver cirrhosis. I remember praying so hard in my mind that it wasn't, because it is irreversible. It was a whirlwind of events, emotions, and thoughts that came after - but we were both so alert, so lucid, and logical. I can only attribute it to God's grace that we were able to pull through.
An abdominal CT scan was done, and while we were thinking that there was something wrong with his liver, here was a cardiologist (whom the staff called on emergency) running to meet us when Nizar was wheeled out of the CT scan room on his mobile bed. The doctor was asking us if a 2d echo was already done and if he had any history of heart problems. We said no. Nizar and I were looking at each other like it was a scene out of an alien movie. Did we just hear the doctor say that that his heart was failing? Apparently, during the CT scan, it was incidentally caught in the imaging that the heart (only partially seen) was also full of fluid.
A 2d echo was done shortly after to see what was happening. There was so much fluid in/ surrounding the heart that it was "drowning" and could no longer pump blood efficiently. This is a medical emergency known as cardiac tamponade. We were told that we were just hours maybe from complete heart failure. Surgery was scheduled as soon as possible the next day, to drain the fluid and relieve the pressure. The doctors also planned to remove a part of the pericardium (outer covering of the heart) to prevent recurrence of fluid build up.
Nizar was moved to the telemetry suite prior to surgery, so that monitors and machines could be connected to his body to monitor his heart rate, oxygen, vitals. His resting heart rate was at running speed (>120-130).
surgery was successful, they were able to drain over 1L of bloody fluid,
and more was coming out in the attached drains after. A portion of the pericardium was also removed. That surgery saved his life and relieved the situation partially. We are extremely thankful for our medical team there.
Making it through this emergency, and coming out of the surgery in better overall condition was a miracle.
was the second miracle that God gave us. The first one was Nizar being
able to get home alive. I found out from Nizar later on that
he was praying all throughout the time he was abroad for God to allow him to
survive the two weeks, to give him just enough strength for him to get home in time to get
himself checked. He could not imagine how he was able to survive
the long-haul flight and long layover in the airport by himself, with heavy luggage in tow, when he was in such bad shape.
These two years have been full of miracles and testimonials of God's love, mercy, and grace.
The cause of the fluid build up was still unknown. In a follow up scan done a couple of days later, it was found that there was a mass in his heart which could be the cause of it all. This was not visible in the initial scan because of all the fluid. They did not know what it was, and they were able to rule out every other illness that can be checked (TB, HIV, autoimmune, etc.), except for that feared diagnosis - cancer. Cancer was such an impossible and farfetched diagnosis for us at that time. He was recommended to have sternotomy and open heart surgery right away, but Nizar along with the support of our entire family, decided to go home first to let him recuperate from the surgery, to try to recharge emotionally, and to seek other medical opinion. Plunging into another major surgery when he just came out of one was just too much to deal with at that time.
The 2nd Surgery
So we went home. And it wasn't a vacation. Each day was a struggle to just get by - emotionally, mentally, physically, we were exhausted. We did not know what we were up against. Nizar was discharged from the hospital with a JP drain attached, and I remember we had to drain the bloody fluid a few times each day and measure the output. We spent almost every day going to different hospitals, seeing different types of doctors, different specialists, going through different lab tests, trying to get a second, third, fourth, opinion. The common opinion was to remove the mass. And many doctors were saying that it didn't seem to be cancer - Nizar looked okay (he lost weight, but was not overly thin), and he was up and about, walking. They knew that it could be, but they didn't think it was.
We knew we were pressed for time to arrive at a decision on the next step. Nizar still felt strongly against a sternotomy (where the sternum/ middle of the chest is cracked open to gain access to the heart) because of the pain and the amount of time it takes to heal, influenced by the trauma he developed from the sudden turn of events. Worries on finances was also a factor.
We prayed to God to guide us and steer us in the right direction. At one medical consultation, the cardiologist we were going to see had such a long line of waiting patients, so we decided to consult with another available cardiologist just a few rooms away while we were waiting for our turn. That cardiologist referred us to a TCVS (cardiothoracic surgeon) also available at that time, and lo and behold, he was the first (and only one) who advised that VATS (video-assisted thoracoscopic surgery) can be done. He's one of the few specially trained surgeons on this procedure. It's a minimally invasive surgery where the thoracotomy/ cut will be done through the side of the ribs, and not in the sternum. It allows for faster recovery and healing, and it was slightly lower in costs. The doctor's name was also the same as one of the saints we were praying to. We knew that this was what God wanted us to do, and he was leading us to our current set of amazing doctors.
It was a very tough night and week for all of us. Knowing that it could be cancer, but having all those days convincing ourselves that it isn't while at the same time googling up what we can, was one of the most difficult and heavy times we've been through. Nizar was having intense night sweats where his garments and sheets were completely drenched, which is one sign of cancer. Not knowing (or maybe not yet accepting) what we were facing was almost more emotionally draining than actually learning of the diagnosis.
Admitted for the upcoming surgery to excise the mass in the heart. We didn't know what to expect, so we just tried to smile, and pray. Nizar's sense of humor showing through in this picture. :)
Clockwise: Family waiting for news on the ongoing surgery; Nizar newly wheeled into the surgical ICU post surgery; Mobile xray brought to room 2 days post surgery to check on lungs; Nizar transferred to regular room the day following surgery, and doctor inspecting the surgical site and drain.
On the afternoon of July 6, 2017, everything changed upon getting that diagnosis - cancer. We were hoping and praying against the odds that it was anything but.
It is angiosarcoma (cancer of the inner lining of the blood vessels), and primary location was the heart. The tumor was only partially excised due to the risky location, so a part still remained in the right atrium. It was an intermediate-grade malignancy.
Nizar had cancer.
How does one react to such news? It was such devastating news but initially it felt surreal, one that only happens in the movies. The surgeon was communicating the results and I kept on trying to wrap my head around it, trying to understand every word he said, while the rest of my being was flying in different directions. My thoughts were already racing on what to do next and the possibilities. I was asking logical questions as if I was detached from the situation, and silently asking God for help. When it sunk in, it felt like a punch in the gut for a while. We
were both in a google frenzy trying to find out as much as we can about
the disease, with hope sinking due to the poor prognosis
stated in the internet. 3-6 months, for cardiac angiosarcoma, literature
says. Nizar, understandably, felt like he was given a death sentence.
But at the same time, it felt good to finally know what it was, it allowed us to move on to how to attack it. The nearly 2 months we spent in limbo was finally over.
Eventually, the drive to fight and face this head-on was stronger. One of the angels God has sent to help us during our journey had sort of prepared us for this - that someone had visited us the very morning of the diagnosis (without anyone knowing that the results were going to be shared with us that afternoon) - to tell us that no matter what is written on paper, God is good and merciful and we can continue to pray to Him for our heart's desires even if the reports seem discouraging.
It's amazing how God works, how He uses the most difficult circumstances, when we feel we're at the lowest of the lows, to help people get closer (to Him) and to transform dire situations into blessings, to transform lives.
I can save this for another post, but I just need to write here that no matter where you/ we are in our lives, no matter what we're facing, God loves us and is always there with and for us, despite us feeling otherwise and not fully understanding why things happen.
Attacking the Beast
Angiosarcoma is such an aggressive type of cancer that has great resistance to treatment. Therefore treatment also has to be aggressive - no delays where possible.
We were referred to an oncologist right away. She is another God-given 'angel' to help us with our battle, and moreover, to get us closer to Him by helping us know Him better.
Chemotherapy using a "cocktail" of strong chemo drugs was scheduled during the same hospital stay as the surgery. See, one of the blessings we received was finding the right surgeon, who knew how to do the surgery using VATS. Because it has faster healing time, and it was a smaller incision/ wound (as compared to sternotomy), Nizar was cleared to start treatment right away. If sternotomy / open heart surgery was done, we would have had to wait 1.5 - 2 months to fully recover before being allowed to undergo chemo. And at that point, time was of the essence.
Nizar was ready and his family was there to support us for the first day of chemo using liposomal doxorubicin (it has the moniker "red devil" due to its evil side effects) + ifosfamide + Mesna. Barely 1cc was in, and he started going into anaphylaxis. It was an extreme allergic reaction - his airways were closing up, body was feeling hot and sensation was numbing, head was aching terribly, he was super red (dark red). I was trying to catch a video of his first chemo, was walking from one side of the bed and circling it to the other, when I realized right away what was happening so quickly and I threw my phone down. I immediately took his hand and helped him breathe in and out slowly. Thank God for the attending nurse and our doctor who acted instantly, closing the line, flushing and diluting it with hydrocort. Nizar returned to normal after a few minutes.
Clockwise: Pre-meds administered to help counter any allergies; Starting the very first chemo with the "red devil" (a few seconds later from this shot, Nizar had a terrible reaction); ECG done for monitoring.
It was such a scare, but at the same time we were amazed by God's power and mercy. That was our 3rd miracle. A few seconds too late, and he would have really gone into anaphylactic shock and he would have been intubated right away.
Our doctor ordered an ECG and frequent monitoring of vitals that day to make sure Nizar was indeed okay.
We were sent home for the weekend to spend just a few days at home with our son, and returned to the hospital for admission the following week to have our real first chemo using a different protocol (epirubicin + ifosfamide + mesna). This protocol worked for around 6 cycles (3-4 months) until it lost its efficacy and we had to change.
List of protocols we've already tried:
- Liposomal doxorubicin (Caelyx) + ifosfamide + Mesna
- Epirubicin + ifosfamide + Mesna
- Paclitaxel (Paxus PM)
- Pazopanib (Votrient)
- Eribulin (Halaven)
- Gemcitabine + Docetaxel
- Sorafenib (Nexavar) - current
I will leave this post here, and will create more posts in the future.
Thank you for taking time to be with us on our journey. Your donations are most helpful, but we also request for prayers where possible.
God bless you!