Rima Roy is a young woman of 22 and suffers from a rare condition of Giant Cell Tumors in the Sacram. She shares the emotional toll the diagnosis took on her and how she has come to terms with this rare condition.
Describe yourself, Rima
I am a warrior in the battlefield of rare disease since I was 19
When were you diagnosed?
19/04/2016. X-ray of the Lumbo- Sacral Spines AP/ LAT views revealed Transitional vertibrae: D12 having rudimentary ribs & L5 sacralized. Then on 14/03/2018 the disease " Giant cell tumor ( GCT) in Sacram ". was diagnosed.
What were the early symptoms?
Pain in the right leg and muscle pain in the waist. I fell down while returning from college, and then I couldn't stand or walk.
Please tell us about your condition and the treatment you have been going through since your diagnosis.
- The Condition: Giant cell tumor in sacrum is a locally highly aggressive tumor of the bone. GCT of Sacrum location is rare. It comprises 5 to 10 per cent of all benign bone tumors. The disease is congenital.
- Treatment: The treatment first started with a neurologist of Nilratan Sarkar Hospital ( Govt) from January 2018. Then I was referred to an Orthopaedic surgeon in March 2018. I was then referred to Radiotherapy C tumor board for valuable opinion and Radiation therapy started from 4th August and ended on 4th September on completion of 25 phases. Before radiotherapy I consulted a specialist at Narayana Super speciality hospital, department of Musculoskeletal oncology, who opined that surgery is going to be morbid with possibility of paraparesis and loss of bladder and bowel control, though surgery is the best option.
I decided not to go for surgery because of our poor financial conditions and of high risk of becoming partial paralytic owing to the limited surgical accessibility and proximity of the tumor to the nerve roots. I underwent radiotherapy but in vain. I became very much depressed and anxiety engulfed me. Then the doctor prescribed DENOSUMAB 120 injection which costs ₹24000 per vial and advised me to wait till the approval from the health department of WB. In the meantime the disease progressed.Then at last the injection reached and I have been administering DENOSUMAB once a month. I have completed 4 doses till now. I don't know how long it will continue.
What were your first reactions when you were told of your diagnosis?
I was shocked, puzzled, depressed and asked myself," why me?"
What's your present condition?
Now I am better, I can walk, even sit for some time.
Please describe your experience of managing the condition.
It is really a tough journey. In the beginning I thought, "I am undone". Once I even attempted suicide as I was unable to endure the mental agony. Gradually I developed determination, zeal, endurance, willpower and now I am hopeful to be cured even if it takes a prolonged treatment. I have accepted the challenge and the reality.
What medications are you on?
DENOSUMAB inj, Celol max D3, UpriseD5 60k, ISA capsules, Pan40.
Were there any side-effects of the medicines and how are you coping with the side-effects?
During intake of morphine which has stopped now, nausea, drowsiness, constipation were the side-effects which were arrested by ondem, dupalac, iron and vitamin.
At present, the side-effect is mainly a loss of calcium for which I am taking calcium substitute.
What kind of specialists do you consult and how often?
I undergo injection once a month in NRS hospital and if any other complications arise I consult Dr Bannerji of EIPC, Barrackpore.
To my mind Dr S Bannerji and Dr Anjan Bera are "Good Samaritans".
Did you see a counselor for support?
While I was passing through a difficult mental status of frustration, Runa Mitra of Eastern India Palliative Care Barrackpore WB invited me to meet their counselor Pranab Kumar Basu who helped me work my way out of depression. I regained mental strength and resilience with the support of EIPC members namely Kuheli Dutta, Runa Mitra, Debarun Sarkar, Abhijit Mondal and Amrita Ghose. I still keep in contact with my counselor for any problem ..
What resources are available in your city to help you manage the condition?
Resources are not available in my city except EIPC clinic.
Have you had to make some changes to your lifestyle?
Yes, I have to give up studying and also had to quit my part-time job as a receptionist in a pathological clinic, I try to stay okay now by controlling my diet and avoiding junk food.
Have you tried complementary medicine to cope with your condition?
No
How has your family supported you?
They were afraid and anxious, and in a fix as to what to do next. But I have received complete emotional support from my mother, elder sister and cousin elder brother. I lost my father long ago.
How did your friends treat you?
The has helped me to identify my real friends. I was shocked at the behaviour of my best friend..
How has this changed your perspective in life?
My perspective in life has changed. I must accept the reality of life. I am now trying to concentrate on drawing and, creating objects out of abandoned small things. I am also trying to control emotional outbursts.
What advice do you give other patients?
Be positive,try to defeat the condition you are suffering from, accept the challenge and reality of life.
( As told to Pranab Kumar Basu)
