1st Month on Glivec

A week ago, dad went for an appointment with his oncologist. He had completed a month-course of Glivec. So far, he experienced swollen left foot which was sprained before. There was a slight swell on the right foot at the ankle. Dad said must be the long train ride the day before. I really want to hope so. Mom said when they are back home, the swell subsided to a slight one. Another observation is that ever since he started taking Glivec, he experiences leg cramps during sleep. It eases when he stretches the leg. Thank God, no other issues. Pray that his body is taking it well….

With the regular phone calls home, I will remind dad to prop up his feet when sitting down and sleeping. To continue to exercise regularly and do deep breathing exercise. However, when unwell, to let the body have total rest instead. Not to forget to drink plenty of water throughout the day, starting with a tall glass of water accompanying the medication. Coconut water is very good it seems! I do should like an old lady, don’t I?

Many people are unaware what GISTs are all about. In general, people associate cancer with surgery, chemotherapy and/or radiotherapy treatments only. It was strange and still is, to hear some cancers can’t be treated via the aforesaid treatments, but oral medication, like in my dad’s case, a drug called Glivec (or Gleevec to some). For those who are unaware, I’ve quoted some links below for your further understanding.

Gastrointestinal stromal tumours (GISTs) are rare cancers. About 900 people in the UK are diagnosed with a GIST each year. They are most common in people aged 50–60 and are rare in people younger than 40.

GISTs belong to a group of cancers called soft tissue sarcomas. Sarcomas are cancers that develop in the supporting or connective tissues of the body such as muscle, fat, nerves, blood vessels, bone and cartilage.

Most GISTs begin in the stomach or small bowel, but they can occur anywhere along the length of the digestive tract. The digestive tract is the hollow tube that runs from the gullet (oesophagus) to the anus (back passage).

The treatment for GIST depends on a number of factors, including your general health and the size and position of the tumour. The results of your tests will help your doctors decide on the best treatment for you.

Because GISTs are rare cancers, you should be referred for treatment at a specialist unit. You may have to travel to a hospital outside your area for this.

The most common treatment for GIST is surgery to remove the tumour. Drugs known as growth inhibitors are used to treat GISTs that can’t be removed with surgery.

Chemotherapy and radiotherapy don’t work well for this type of cancer and so are not used.

Growth inhibitors are drug treatments that are taken as tablets. They work by blocking signals within the cancer cells that make them grow and divide.

In about 85% of people with a GIST, the tumour cells have a change (mutation) in a protein called KIT. This change means the GIST cells constantly get signals telling them to grow and multiply.

Treatment with growth inhibitors can block these signals. This may make the cancer shrink or stop it from growing. Growth inhibitors may be used to treat GISTs that can’t be completely removed with an operation. There are two that can be used to treat a GIST. These are imatinib (Glivec ®) and sunitinib (Sutent ®).

The National Institute for Health and Clinical Excellence (NICE) currently advises doctors on the use of new drugs and treatments in the NHS. It recommends that imatinib is used as the first treatment for people with a GIST that can’t be completely removed with surgery or has begun to spread. Treatment with imatinib is continued for as long as it is working.

Imatinib may sometimes be given to people who have had surgery to completely remove a GIST but who also have a high risk of the cancer coming back. Treatment that’s given to reduce the risk of cancer returning is called adjuvant therapy. This treatment has not been approved by NICE, which means that imatinib may not be widely available as adjuvant therapy for GIST in the NHS. Adjuvant therapy with imatinib has been approved for use in certain circumstances by The Scottish Medicines Consortium (SMC) in Scotland.
(Source : http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Softtissuesarcomas/Typesofsofttissuesarcomas/GIST.aspx)

Through dad’s oncologist did we find out the existence of a foundation which has helped many people with cancers around the world. Treating cancer is not only expensive but a long dreadful emotional journey for the patient as well as the family members. It is most unfortunate for those who don’t have the financial capacity to seek better treatments for themselves. Thanks to Max Foundation, for the support and bringing hope to many cancer patients around the world. Following, read more about the Foundation. Who knows when it can bring light to someone’s life.

The Max Foundation is a global health organization that believes that all people living with cancer have the right to access the best treatment and support. Through personalized access services, quality training and education, and global advocacy efforts, we aim to help people face cancer with dignity and hope.
(Source : http://www.themaxfoundation.org )

I shall continue to keep a journal on my dad’s health condition and his treatment journey. I hope that by doing this, more people will get to know and understand GISTs and its treatment. It has been almost 2 months since the first time we sought consultation from various doctors and did several tests to finally get an official diagnosis.

I find that it is also helpful to join the GIST Support International (GSI) at Facebook, where patients and caregivers meet to share their experience and knowledge, worldwide. They are a group of understanding and supportive people. Some are GISTs survivors, some are still undergoing treatment and trials. My prayers go out to every one of them, patients and caregivers, alike.

I have also learnt that it is best to break the news to my parents instead of hiding the facts from them. That way, they will be more mindful of their daily diet, medication and maintain a healthier lifestyle. The most important thing is to develop strong immune system and be more optimistic.

At our next appointment, which is also two months into consuming Glivec, dad has to go through CT Scan to see if the drug works well for him. As long as the tumors remain as they are or seeing signs of decreasing in size and numbers, that would be great news for us. May I ask for your prayers, for my dad and for Glivec to work some wonders.

Thank you and God bless.

~ Alice N.

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