Indian Society of Organ Transplantation (ISOT)
is a registered society under the Indian Societies Act and was registered on 24th April 1990 wide registration no. Guj./2015/Ahmedabad vide letter no. SPL/R.5/1G. The office of the Society moves along with the Hon. Secretary of the Society. The council is the administrative wing of ISOT.
Reference:
Discussion with Dr Balasubramaniyan MBBS, MD (Gen Med), DM (Gastro) on Liver transplant @ Mavelikkarai
Dr. Balasubramanian G, a renowned Gastroenterologist from Pela, Mavelikkara, Kerala is an expert in the field of Gastrointestinal Endoscopy with specialization in Colonoscopy, Capsule Endoscopy, High Resolution Manometry, Therapeutic GI Endoscopy and Side View Endoscopy. He offers patients the latest diagnosis and treatment methods for gastrointestinal diseases through Digestive Disease Centre (DDC), a self established Endoscopy unit in Mavelikkara
Table meeting with Doctors from Dr Kunhalus nursing home
ASK CLF is starting a weekend liver clinic to benefit Chennaites!. It will be attended by our senior Doctor Dr Selvakumar Naganathan
Weekend Liver Clinic will be opened on every weekend from
Saturday 05:00 pm to 09:00 pm
Sunday 09:00 am to 03:00 pm
Location: ASK LIVER CLINIC, 49, 9th St, R.V. Nagar, G Block, Anna Nagar East, Chennai 600102
Contact: 9871756756
Whatsapp: https://wa.link/2q4w1z
There continues to exist stigma around taking medications for diseases such as cancer. Survivors should not have to carry this additional burden of social stigma. Being supportive and empathetic is and should be the only way forward
ne day last year, I felt a crushing fatigue, nothing like I had ever felt before. Like a bolt from the blue. Even standing up was proving to be difficult. As someone who was in good physical health, exercising one hour daily, dancing regularly and just back from an important work trip, I could not have imagined even in my wildest nightmares that what I felt was the beginning of something so sinister.
The journey that followed involved a worsening of symptoms (mostly fatigue, nausea, vomiting and a lack of appetite), a battery of tests and scans and various hypotheses from multiple doctors as to what the diagnosis could be. When the diagnosis finally arrived, it was one which was totally unexpected and for most completely unheard of.
I had been diagnosed with a rare form of lung cancer called ALK (Anaplastic Lymphoma Kinase) positive. Incidentally, June is ALK-positive cancer awareness month. This cancer mostly occurs in the lungs but can also originate in other body parts such as the breast and the brain. Simply put, ALK is a gene in your DNA and if part of it is mutated, it can result in uncontrolled cell growth i.e. cancer. The mutation in the gene is, however, not known to be inherited.
There are many surprising facts about this type of cancer. For instance, it occurs overwhelmingly in younger adults — people in their 30s and 40s — compared to others with lung cancer who are typically diagnosed around 70 years of age. It also strikes young women disproportionately. The most startling fact though and one that is completely contrary to popular belief is that this cancer affects non-smokers like myself. It is perhaps for these reasons that even doctors found it challenging to understand my diagnosis and this also goes to show the importance of being as self-aware and educated as possible about this disease.
ALK-positive lung cancer causes about 72,000 new cases of lung cancer each year, worldwide and 64,000 deaths every year, globally. Unfortunately, at the time of diagnosis, around 90 percent of those with this form of cancer have a disease that has spread to body parts beyond the lungs (metastatic or stage 4 cancer). ALK-positive cancer is currently incurable but there are medications (oral tablets) which can extend a patient’s life. I, too, live on such medicines every day. They have their share of side effects which need to be managed, some medically, others through sheer mental strength and willpower.
Being a very deceptive cancer, ALK often mutates further and becomes resistant to the tablets. This creates challenges for long-term survival but with research, there is hope that better medicines will keep becoming available and lifespan will be prolonged.
Well, given that its risk factors are not clearly understood and that it often has an unusual presentation, there might not be a lot that you can do to prevent it. But you can certainly be aware of any signs or symptoms. These might be related to the lungs such as coughing up blood, shortness of breath, a cough that does not go away, chest pain and hoarseness.
Alternatively, they might be non-specific or even related to other parts of the body (depending on where the cancer might have spread) such as fatigue, appetite loss, weight loss and nausea. It is imperative that you take action as soon as you notice anything unusual at all about your body. This of course holds true for any type of cancer, not just ALK.
It is not all about the body though. A lot of the fight against cancer is in one’s mind. It takes an immense amount of resilience and courage to live with an aggressive disease like the one I am afflicted with. I would not be able to undertake this journey without professional psychological support. Soon after I was diagnosed with ALK-positive cancer, I started on anti-depressants. I do believe that the medication has helped me cope with the harshness of my new normal.
Why am I sharing this? Because I believe that there continues to exist stigma around taking medications for mental health-related issues, even when it comes to living with an awful disease like cancer. Cancer survivors should not have to carry this additional burden of social stigma. Being supportive and empathetic is and should be the only way forward.
The author is Director, NITI Aayog. Views expressed are personal.
Reference: https://www.news18.com/opinion/alk-positive-cancer-a-survivors-perspective-8082013.html
ALK-positive cancer is a type of cancer with no known cause, and no known cure (once it has spread to other parts of the body).
It is caused by a mutation of the ALK gene. It is not thought to be a disease that is inherited, or can be passed on to others in any way. It is thought to occur in about 100,000 people, worldwide, every year.
ALK+ refers to the presence of anaplastic lymphoma kinase (ALK) gene rearrangements or mutations in certain cancers. The ALK gene encodes for a protein involved in cell signaling and growth regulation. When the ALK gene undergoes rearrangement or mutation, it can lead to the overactivity of the ALK protein, which can promote the development and progression of cancer.
ALK+ is most commonly associated with a type of cancer called anaplastic large-cell lymphoma (ALCL) and a subset of non-small cell lung cancer (NSCLC). In ALCL, the ALK gene rearrangement leads to the fusion of ALK with another gene, resulting in the production of an abnormal ALK protein. In NSCLC, ALK gene rearrangements also occur, resulting in the production of abnormal ALK proteins.
The identification of ALK+ cancers is important because it has treatment implications. Targeted therapies, such as ALK inhibitors, have been developed to specifically target the abnormal ALK protein and inhibit its activity. These therapies have shown significant efficacy in treating ALK+ cancers, leading to improved outcomes for patients.
Lung cancer may not show symptoms until you’ve had it long enough for it to spread to other parts of your body. It is harder to treat as it progresses, so do not delay checking in with a doctor.
If you suspect that you have any symptoms of lung cancer, like those below, see your doctor immediately:
It’s important to note that these symptoms can also occur in other conditions, and the presence of ALK+ mutation does not necessarily mean that all these symptoms will be present
Things are looking WAY up for ALK-positive patients. Two decades ago, patients with stage 4 NSCLC had a 2% chance of achieving 5-year survival rate, according to NCI data.
But because ALK-positive lung cancer is so responsive to TKI medications, there has been rapid increases in patient life expectancy. A study in December 2018 found that the median survival for people with stage 4 (IV) ALK-positive lung cancer was 6.8 years with the right care. That was two years ago. Importantly, because 6.8 years survival was the median, approximately 50% of patients also lived longer than 6.8 years.
Depending on several factors – including the specific type and stage of cancer, the overall health of the patient, and the effectiveness of available treatments. It is important to note that I am an AI language model and cannot provide specific medical advice or predict individual outcomes.
In recent years, advancements in targeted therapies have significantly improved the prognosis and life expectancy for patients with ALK+ cancers. Drugs such as crizotinib, ceritinib, alectinib, and brigatinib have shown promising results in treating ALK+ NSCLC. Similarly, in ALK+ ALCL, chemotherapy combined with targeted therapies like crizotinib or brentuximab vedotin has demonstrated positive outcomes.
Here are some organizations worldwide that are involved in research, support, and advocacy for ALK+ cancer:
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/alk-positive
https://en.wikipedia.org/wiki/ALK_positive_lung_cancer
www.alkpositive.org.uk
https://www.news18.com/opinion/alk-positive-cancer-a-survivors-perspective-8082013.html
On 8th March 2023, the Bank of Baroda Zonal Office Higher officials Mr. Suresh Gajendran Dy. General Manager & ZH, Mr. Jeevan, AGM, Ms. Nandini Manager Hr came to MGM Cancer Institute to felicitate Dr. Veda Padma Priya for her service to the Women’s Society on the occasion of Women’s Day.
Ask foundation helping liver transplantation in National Cancer Research and Transplantation (NROC) in Astana, Kazakhstan
Dr Selvakumar was well received by Dr Zhanat Satpayev, NROC
