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Submitted by PatientsEngage on 16 October 2019

Ushakant Shah, 75 from Ahmedabad was diagnosed with Chronic Myeloid Leukemia (CML) 16 years ago. He went through intensive treatment which caused a lot of complications. He fought with all the courage he could summon and established an NGO KarunaKare to reduce the burden of care for poor cancer patients. 

It was October of 2003, my family and I had gone to Bombay to attend a wedding. On the 2nd day, I had some back pain which I thought was due to the hectic schedule. On the 3rd day, there was shooting pain in the back so I went back to the hotel to rest. By evening, I had high fever so took a Dolo (analgesic) after consulting my family physician on the phone. I felt comfortable that night and was due to head back home the next day. As soon as I reached Ahmedabad, I went to see my doctor who sent my blood for testing. When the reports came back, he suspected leukaemia and that’s how my oncology journey started. I was 59 years old at the time.

I was referred to an Oncologist to get a bone marrow biopsy done. The result that came back was inconclusive as to whether it was ALL or CML. Subsequently, a sample was shipped off to an Oncologist in Chicago for a second opinion. It was found to be CML but he suggested we do a second biopsy just to be sure. We redid the biopsy in Mumbai this time, and it was confirmed to be CML.

I decided to do the treatment in my hometown Ahmedabad where my family support was present. My Oncologist assured me that the treatment protocol would be the same and supported my decision. 8 days after biopsy results came in; I was placed in the BMT room where Chemotherapy started. Chemotherapy was very strong and harsh, so much so that because of the side-effects my doctor decided to halt it after the 5th cycle. All in all treatment lasted for 18 months. Around the same time, Gleevec had come into the market, so I was put on it under the Max Foundation program. I still take 300mg of Gleevec daily and luckily it has been working for me. It is a lifetime drug for me but the dose had reduced now.

Chemotherapy effects and complications:

I frequently had decreased levels of hemoglobin and fever during the neutropenia period. If body temperature rose to 1000F, I would be rushed to the hospital. One time, I was given 36 units of platelets and plasma for 10 days continuously. That was one of the worse moments in my treatment and that was when my doctor decided to discontinue Chemotherapy.

After my 4th cycle, my weight had dropped to just 46 kilos. My wife was once told that my prognosis was 30-40% chances of survival. There were times, when my wife thought I was almost gone. There was immense weakness which got her very worried. Luckily I came out of it time and again. I feel like there was some spiritual power looking after me.

My blood pressure would fluctuate immensely after Chemo; my potassium and creatinine levels increased dramatically. I also remembering have two episodes of UTI. Since the past 2 years and 8 months, I am now on dialysis twice a week as my kidneys took a huge toll.

Coping with it all:

One of the things that kept me going besides will power and faith in God was deep breathing. I couldn’t do Pranayam as usual so it was mostly deep breaths while lying in bed.

It was a slow recovery process, took almost a year after treatment stopped for me to feel normal again and want to talk to people. It was almost like I had died and was reborn. My brain would go into a deep stance for 3-5 hours where I would not talk or respond. I didn’t realise it at the time or recall these hours.

Alternative medicine:

For several of the chemotherapy side-effects, such as colds, headaches, constipation, UTIs etc, I relied on Homeopathy medicines to prevent any further side-effects from Allopathy.

PETip: Please discuss any alternative medicine you take with the treating doctor. Some alternative medicines can affect the efficacy of the treatment. 

Lifestyle changes:

I believe that holistic health is very important! I spend the first three hours every morning doing meditation, yoga and pranayam. I never watch the clock and over the years it has become a set routine.

I used to be a foodie who loved eating out and trying different cuisines. After my diagnosis, my son and I did a lot of reading on how to make my diet well balanced so that I didn’t have to rely on multivitamins. Since my kidneys had been affected, I started restricting my salt intake. My liquid intake was limited to 800ml per day which made constipation a chronic issue. I do focus on fiber rich foods like lots of raw foods etc. I don’t eat the traditional breakfast items anymore and instead have a lemon ginger turmeric juice followed by freshly cut seasonal fruits (mostly papaya due to several fruit restrictions for my kidney). My last meal is rarely after 8 pm.

During and post treatment, I was on 1mg of Activan (sleeping aid) for quite a few years. This is something that most patients are put on to help with sleeping and end up getting stuck with it for life. Slowly, I have weaned off it and am able to sleep for 6 hours comfortably every night.

Biggest support:

Wife and children of course; that is why I opted to have treatment in my hometown. My wife was with me 24/7 and sacrificed a lot, which in turn gave me the courage to live.

Advise to other patients:

  • Every type of advice will be given by people. Don’t listen to it all!
  • Just focus on your treatment and trust your doctor. Don’t waver too much.
  • Stick to your entire course of treatment; don’t stop halfway.
  • Build your self-confidence; fight it like any other disease.

What keeps me awake at night?

I’m worried if something happens to me, what in turn will happen to my wife. As far as cancer is concerned, I’m not worried about recurrence. I leave that to God.

Present condition:

About 8 months ago, my BCR ABL test detected some leukemia cells. I was asked to follow-up and since my last BCR ABL test, there has been no change in status.

I used to be a Business man before my diagnosis. During my hospital stay, I saw so many underprivileged patients and that really made me feel blessed. So I decided if I survive my cancer, I will wind up my business and do something for the poor cancer patients. We started by doing small things like providing food, and clothes. In late 2004, I established my NGO called KarunaKare. We have just completed 15 years and have served over 35000 patients so far. Our aim is to reduce the burden of the patient in any which way we can. We have volunteers at the GCRI government hospital who help patients with their paperwork, or counselling or educating them about nutrition etc.

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