Son Faces Long-Distance Caregiving Challenges to Help Father with Cancer (https://www.myeloma.org/blog/long-distance-caregiving-challenges-cancer)

Patient Stories
Arpit Kapdi and his family

Son Faces Long-Distance Caregiving Challenges to Help Father with Cancer 

When Arpit Kapdi left Mumbai for the United States, he never imagined that one day he would be helping save his father's life from nearly 8,000 miles away.

An engineer living in Detroit since 2015, Arpit returns to India each year to visit his parents and brother. During a family visit in December 2019, he noticed something unsettling about his father, Kamlesh.

The man who once loved hiking and could walk for miles without tiring seemed diminished. Arpit’s father was moving more slowly, struggling with severe back pain, and becoming exhausted far more easily than before.

"I saw a lot of change in my dad," Arpit recalls. "He used to love hikes. He used to walk kilometers without getting tired, and when I was there in 2019, he seemed like a different person."

What followed would launch the Kapdi family into years of medical uncertainty, difficult decisions, and a journey that tested their resilience across continents.

An Unexpected Diagnosis

Doctors soon discovered that Kamlesh had fractured his twelfth rib. To rule out multiple myeloma, his physician ordered a serum protein electrophoresis (SPEP) test (https://www.myeloma.org/multiple-myeloma-blood-tests). At the same time, a sample taken from a cold abscess near the rib revealed another surprise: tuberculosis (TB) (https://www.cdc.gov/tb/index.html).

Before the family could fully process the news, Arpit's holiday ended, and he returned to Detroit.

Soon afterward, the SPEP results showed an M-spike of 2.6 and an elevated light-chain ratio. Further testing revealed a cytogenetic abnormality known as 1q amplification, a genetic feature associated with more aggressive myeloma.

Yet the picture remained unclear.

A PET-CT scan (https://www.myeloma.org/multiple-myeloma-imaging-studies) showed that the rib fracture had been caused by the TB infection rather than a myeloma-related bone lesion. The findings left physicians grappling with a difficult question: Did Kamlesh have active multiple myeloma requiring immediate treatment, or was he living with smoldering multiple myeloma (SMM) (https://www.myeloma.org/what-are-mgus-smm-mm), a precursor condition that can often be monitored without therapy?

Learning to Self-Advocate for Myeloma

The answers depended on which specialist the family consulted.

One hematologist recommended starting treatment immediately. Another New Jersey hematologist, Dr. Jatin Desani—a distant relative of the family—believed Kamlesh had smoldering multiple myeloma (SMM) and cautioned that immunosuppressive therapy could worsen Kamlesh's TB infection.

Seeking clarity, the family obtained additional opinions from two other hematologists in India. Their conclusions aligned with Dr. Desani's assessment.

For Arpit, the experience highlighted how difficult it can be for patients and caregivers to navigate conflicting medical advice.

Caregiving Across Continents

While Arpit's mother and brother provided day-to-day care for Kamlesh in Mumbai, Arpit found himself in an unusual caregiving role from Detroit.

Distance, though challenging, offered perspective.

"If you're living in the same house, sometimes everyone gets bogged down and you're not able to think clearly," he says. "Being here [in the U.S.], I was able to think differently."

With support from his wife, Arpit immersed himself in research, drawing on educational resources from the International Myeloma Foundation (IMF) — including many interactions with the IMF InfoLine team. With this knowledge, he carefully reviewed his father's test results. The more he learned, the more confident he became that immediate myeloma treatment was unnecessary.

The family ultimately chose a hematologist who agreed that Kamlesh had SMM. The focus shifted entirely to treating the TB infection while closely monitoring myeloma markers each month.

It seemed like a plan. But the challenges were only beginning.

One Crisis After Another

A month into TB treatment, follow-up scans showed encouraging improvement in the infected rib. Yet, Kamlesh felt worse.

His myeloma markers continued to rise, although imaging still showed no evidence of myeloma-related bone disease.

Then new symptoms emerged.

Kamleh's gums began receding, and painful mouth ulcers appeared. Doctors initially feared oral cancer. Instead, testing revealed histoplasmosis, a serious fungal infection (https://www.cdc.gov/histoplasmosis/about/index.html).

Soon afterward, Kamlesh developed another condition: psoriatic arthritis (https://www.niams.nih.gov/health-topics/psoriatic-arthritis).

Within a matter of months, he was battling tuberculosis, histoplasmosis, psoriatic arthritis, and SMM.

Then the COVID-19 pandemic hit.

Kamlesh tested positive for COVID-19 at a time when the virus was widely viewed as a near-certain death sentence for vulnerable patients. Local authorities in Mumbai wanted to move Kamlesh into a dedicated COVID ward.

His family held their ground and resisted this directive.

Although he tested positive, Kamlesh showed few symptoms. Arpit and his relatives feared that hospitalization could expose him to additional risks while his immune system was already under tremendous strain.

A week later, Kamlesh tested negative for COVID-19. He never entered the COVID ward.

For the family, it felt like yet another narrowly avoided disaster.

A Turn Toward a Myeloma Remission

By late 2021, Kamlesh had finally recovered from both TB and histoplasmosis.

Only then did he begin treatment for multiple myeloma. Kamlesh began with four cycles of Velcade (bortezomib) and dexamethasone  (Vd); followed by treatment with Velcade, Revlimid (lenalidomide) , and dex (VRd) (https://www.myeloma.org/resource-library/understanding-vrd-regimen); as well as cycles of Cytoxan (cyclophosphamide) (https://www.myeloma.org/cyclophosphamide) and dex (Cd). Despite never undergoing a stem cell transplant, he responded exceptionally well.

In December 2025, testing showed that Kamlesh had achieved minimal residual disease (https://www.myeloma.org/multiple-myeloma/tests-staging/mrd-mass-spectrometry-testing) (MRD)-negative status, meaning highly sensitive tests could no longer detect myeloma cells.

Today, the disease no longer dominates Kamlesh's daily life.

A retired diamond merchant, Kamlesh enjoys spending time day-trading stocks.

Finding Purpose in Community

The Kapdi family's experience transformed Arpit's understanding of patient advocacy and the power of community.

They became involved with the Myeloma Friends Charitable Trust (MFCT) (https://x.com/Myelomafriends) in India, where patients and caregivers share information and support through a WhatsApp network. Arpit was particularly inspired by the late Dilip Mewada, a myeloma patient who devoted countless hours to helping others navigate their diagnoses and maintain hope.

The experience also fueled Arpit's commitment to raising awareness about disparities in access to treatment.

While attending an IMF Patient & Family Seminar in Cleveland (https://www.myeloma.org/videos/patient-empowerment-multiple-myeloma-shared-decision-making-clinical-trials-better-care-2025), he learned about advances such as CAR T-cell therapy (https://www.myeloma.org/emerging-therapies/car-t-cell-therapy) and bispecific antibodies (https://www.myeloma.org/emerging-therapies/bispecific-therapies). Yet many patients in India still have limited access to these newer therapies and often rely on older treatment classes such as immunomodulatory drugs and proteasome inhibitors.

"I feel that it benefits probably 5–6% of myeloma patients across the world," Arpit says of the newest therapies. "The rest, 95%, do not have access to any of it."

Holding On to Hope

Looking back, Arpit sees a journey defined by uncertainty: conflicting diagnoses, multiple infections, a global pandemic, and years of difficult decisions.

Yet he also sees the value of persistence, education, and hope.

From Detroit, he helped guide critical decisions in his father's care. In Mumbai, his family carried the day-to-day responsibilities of caregiving. Together, they navigated a medical maze that often seemed impossible to understand.

Today, Kamlesh's story stands as a reminder that caregiving knows no borders—and that determination, informed advocacy, and community support can make a profound difference.

As Arpit puts it: "Going through uncertainty and navigating through it is the only option we have. You have to fight. You have to remain positive and find hope."

 


Source URL: https://www.myeloma.org/blog/long-distance-caregiving-challenges-cancer