28th Month into Glivec

In November 2016, dad went for his CT Scan. He had been going through scans for monitoring the tumour on 8 to 9-month intervals. Same procedure that he has now accustomed to. His oncologist was satisfied with the results.

The tumour size remains unchanged. Tiny lesions in a few places remain stable, are probably benign. Dad will continue to consume Glivec as it is working for him. He has lost a bit of weight as compared to 3 months ago. His Dr isn’t concerned about it. His blood sugar is good, well under control. He is encouraged to eat more. I’m relieved that all’s good.

Dad continues with his morning walks around the lake garden on clear mornings. If it rains, he’ll stay home. Life goes on as usual. Watching over grandchildren at home, having breakfast and tea with friends and catching up on soap operas on TV. During weekends, get will go shopping or eating out with my brothers. I’m pleased that my second elder brother is back and staying nearby. Sundays are family gathering day for my two brothers with my parents.

The next routine meeting with dad’s doctors will be early March 2017. I hope by then, he’ll put on some pounds. We shall continue to pray for my parents’ good health and living a happier and fulfilling life. I am sure this new year is going to be a wonderful year for them. Now, planning for their next holiday destination. It is good for them to relax and be in new environment once in a while. Feeling happy is a great medicine to better health, besides exercising.

Our program with Max Foundation is still active and we are grateful for the continuous support from them. Thank you, Max Foundation.

Here’s wishing everyone a Happy and Fulfilling New Year in 2017!

Cheers,

Alice N.

14th Month into Glivec


Three months had passed since the last CT Scan. Recent meeting on 17th September, with the Onco was just for a chat and to get to know how dad has been doing the last three months. Glad to say that dad is doing well. Weight maintained. Blood test results look rather alright, doctor isn’t concerned about the slight difference in one or two numbers. The brittle nails have recovered except for one, the right forefinger. Dad will continue to apply homemade coconut oil onto it and other nails as maintenance. Considering dad’s improved condition, Dr Mellor says that it is not necessary for us to meet as often. The next visit shall be in four months’ time in mid January 2016.

The visit to the endocrinologist, Dr Chan was great! Blood test results are good especially his blood sugar. Perfect! His regular home-kit test results showed a couple of low readings (tested two hours after lunch). Dr Chan reduces the insulin dosage but encourages dad to do what he has been doing all along, i.e. the exercise, 7 small meals, etc. She further advises dad to stay longer during the next visit because she intends to revert dad to taking tablets. For that, she needs to monitor his progress every two days once he stops his insulin injection. This is excellent news for dad! Let us pray and hope that blood test results will show as good report so that dad can revert to tablets. No more insulin injection! I know he suffers, especially the initial several months. He had never injected himself before; was anxious and clumsy. Thank you, God for answering to his and our prayers.

Bravo to dad! He is serious about getting well and therefore, has the discipline to follow strict routine. I can always count on dad. He knows very well how I feel and he does not wish for me to be worried for him. Thank you dad, for feeling better, for being strong for yourself, mom and us.


Not forgetting, we owe it to the Max Foundation
. Without the Max Foundation, it would be much tougher for us to follow through with the treatment. We are most grateful to Dr Mellor and the Max Foundation. The Max Foundation is a global health organisation; firmly believes that all people living with cancer have the right to access the best treatment and support. Thank you!

Regardless whether you are a cancer patient or a caregiver, it is important to join a good support group. No one else can understand what you are going through as well as those who are in the same boat as you. There are many over the social media. I am a member of the GIST Support International (GSI) group in Facebook. Members are mostly GIST patients, and fellow caregivers. At GSI, everyone is supportive of one another. We share our experience and knowledge. The community also shares fears and concerns. Members are from all over the world. We are one and we are family. We continuously receive news, information as well as virtual hugs and cheers within this group. We share good and bad news freely. We send wishes and prayers throughout the globe, for those in need. Love is all around. And we hold dearly to our Purple Ribbon with much hope. Thank you, fellow Gisters! Love you all!

My dearest readers, if upon reading this, you feel deeply for the Gisters, please offer your prayers to them. 🙏🏻Thank you and God bless.
~ Alice N.

11th Month into Glivec

The time has come for Dad to go for another CT Scan. Silently, we pray for positive results. Dad has been doing well. Keeping himself healthy by exercising every morning, weather permitted and also eating well. He eats 7 small meals a day due to his insulin injection and to keep the blood sugar reading under control. One oat drink before setting out for his morning walk, a bowl of noodles after his walk and snacking on some biscuits/bread at mid morning; lunch, tea, dinner and supper. So far so good that his endocrinologist fully supports his diet.

On 22nd June, mom and I accompanied dad to the hospital. He is now familiar with the procedure that he is fully at ease with it. I’m glad. The results were out in the afternoon. We eagerly proceeded to the Oncologist’s room. We are most pleased to hear that the tumour size has reduced so do the lesions in the lungs. These are the two critical areas.

Dr Mellor informed that should we wish to consider surgery to remove the tumour, we can do so now that it has shrunk to about 2 cm. I asked if dad would still need to take his Glivec post surgery….and he said most likely because there are areas still with lesions present, especially the liver. We may have to continue with Glivec to keep the others under control. Dad declined the idea as he still needs to consume Glivec. Dad is confident that the tumour will further reduce in size with Glivec. Dr Mellor agreed with him based on his age and overall health condition. Dr Mellor is happy with the scan results. Words can’t describe my joy upon hearing the news. I thank God for His blessings and watching over my dad.

The visit to the Endocrinologist was a good one too. Dr Chan was very happy with dad’s blood sugar control. She voiced a little concern over a couple of low readings. Dad’s insulin injection in the morning shall remain but with at a reduced dosage and taking the same prescribed tablet after dinner. Blood test result was excellent.

This is another successful visit to the hospital. I feel so light and happy to know that dad’s progressing well. I can see on the faces of my parents that they are glad that their hard work paid off. I know it isn’t easy to keep our heads held high despite fears, worries and concerns in our mind. Bravo, dad and mom!

The following visit shall be in 3 months’ time, merely consultation. Dr Mellor doesn’t like to repeat CT Scan in a short span of time to avoid over-exposure to radiation. It is not good for anybody more so for a weaker body.

Dad has been on Glivec for almost a year. Looking back, this one year has been most eventful, with the first 5 months being the scariest of all. It was emotionally  draining too. I can’t imagine how mom went through it everyday as the primary caregiver. I can only imagine dad’s fear in facing such situation while trying to protect his loved ones from worrying more. I guess it took a toll on mom when mom was admitted for suspected heart attack, 3 months after dad’s diagnosis She went through tests after tests. Relieved washed over us when we were told she is OK. She was prescribed with smaller dosage of aspirin as a preventive measure. Her condition will be monitored by the local hospital.

I feel that having a family member contracting cancer is the last thing one would expect to happen. It is the worst news for anyone. The first few things that cross people’s minds would be the pain, course of treatments and financials. Thinking back, while I was sad upon hearing the diagnosis from the Dr, I had to keep a brave front for my parents and brothers. Armed with positive mindset I tried to instil the same optimism to both of them especially mom, who is a worrywart. I preached about team work, emphasising that it is treatable, there is always hope. The battle is dad’s but we must stand by him to cheer him on. Mom has to watch over his food too. I read up books on cancer survivors and about GISTs. I opened a medical file and add a health journal on this blog.

Created support group within the family, I roped in my younger brother to spend more time with them and to watch for any sign of small ailments, whatsoever. I am most grateful to him and my sis-in-law for being around my parents. Thanks to the twins (brothers) who will speak to them from afar once in a while. With most children living separately and distant away, it is important to keep in touch to let them know they’re thought of and also to let them listen to our voices. My parents are most understanding when we can’t meet as often as we wanted to.

I can say now that we had gone through the worst together. Nonetheless, we still need to continue doing the right thing…i.e. daily exercise, eating well, positive thinking and enjoy life. Life is short. Let us live our daily lives the way it should be..happy, contented and meaningful.

Thank you my friends, for your prayers and wishes for my dad.

Cheers,

Alice N.

6 months into Glivec/Gleevec

  

I just realised my mistake on Dad’s GIST journal. The title “1st Month on Glivec” is actually referring to 1st follow-up with his Onco after 2 months being on Glivec. Followed by another 2 months, 2nd follow-up and the 3rd in January, which was after 6 months of consuming Glivec.

In the morning before meeting with his Oncologist in January 2015, Dad underwent CT Scan again. We were familiar with the Procedures by then. After the scan, while waiting for the results, we went out for a hearty lunch. Need to be optimistic and the first thing that came to mind was to feed hungry stomachs with tasty hot food.

When we finally met his onco with the radiologists’ reports, we were delighted to learn that the lesions in the liver had decreased further and the size of the tumour in the stomach had also shrunk. However, the signs on the bones remained unchanged, which we have to monitor. All in all, signs had shown positive improvements and that meant Dad responded well to Glivec. Pray for steady route to recovery.

The following day, when we saw his endocrinologist, he was given a thumb-up by the wonderful Dr. Dad then took the opportunity from his good results to appeal for change in prescription to oral medication instead of insulin injections. His Onco had no objections when we spoke to him about it the day before. After much persuasion, she reluctantly compromise with Dad. He still has to take his insulin in the morning but for evening dose, he can replace insulin with oral medication. Dad was to record his blood sugar as requested to see how he responds to the new prescription. Dad has to provide his readings for 7 days. I was so pleased to see how happy Dad was for the little relief from the needle of insulin. That gives him hope that he could perhaps turn this insulin-dependent situation around. He becomes even more optimistic than before! Thank you, Dr Chan and Dr Mellor (the latter for taking time to discuss with the former). Thank God for such caring and dedicated doctors. Thanks to Max Foundation too for the Glivec sponsorship program. We shall be forever grateful! Thanks to the Universe for listening to us, lightening our burden and giving us hope!

I must give the highest credit to Dad. A strong man who is not afraid or even feeling too proud to listen to and take the advice of others (his oncologist, endocrinologist and I). He is determined to get well and therefore is disciplined in his morning exercise and religiously taking his medication. The dad whom I’ve known and love for decades, has always been optimistic and jovial, regardless of the situation he is in. Today, I’m glad to say that he is as optimistic and fun-loving as before, or maybe more. He is a survivor! I’m proud of my dad.

Also, credits go to Mom for endlessly reading articles on cancer and health issues. After surviving a heart attack and went through multiple tests, Mom is now on medication and follow-ups with her cardiologist. Knowing her health risks, she further strengthened her spirit and move forward as positively as possible. Now, both parents are primary care-givers to each other, more like reminders to each other to be well.

I’ve decided to give them breathing space by not monitoring them too closely. I realised my good intention might have added pressure and stress to them to want to feel better, faster. I then return to my old way of weekly chats instead of daily. I was too anxious and worried for them that I made them most uncomfortable and unhappy. Mom was especially worried about me for being worried for them! I learnt from my mistake by letting them be. Instead of mothering them, I revert to my role of being a daughter to them. I let go and move along at their pace.

That brings to me think that as children, there are times when we want to control our parents to do things our way but that is not right. We should sit down and talk it over with them. Let them know our concern as children and listen to their concerns as well. We should then be able to come to a mutual understanding on how to handle challenging situations together as a team. It is indeed pointless for anyone to get agitated and make everyone frustrated. This will only escalate unhappiness and worsen the situation or health condition. Not helpful at all. We have to control ourselves and take it in our strides to think positively and pro-actively. Let’s not react without thinking deeply, especially on such delicate issues, when handling sickness in the family. I know it is tough but for everyone’s sake, especially the unhealthy one, we have to be empathetic, compassionate and have great patience. I believed that when we are optimistic, it can be contagious. Instead of frowning, we should be smiling and enjoy the company of our loved ones.

I shall continue to pray for strength, patience, wisdom and good news for my family!

~ Alice N.

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.

The Big C

Stop Press : Do you know that there is 1 in 6 females being diagnosed with cancer; 5 cases every hour? (Source: Sin Chiew Jit Poh, 29 May 2009) and 39 out of 100,000 will have breast cancer – critical stage! (Source: The Star,  5 May 2009) and still counting…

Breast cancer is a common disease amongst ladies these days. It is not necessarily hereditary. I personally lost a wonderful friend to breast cancer  a year ago. May she rest in peace. She was a bubbly young lady and always has positive outlook in life. She was always smiling when you were with her, even through the times when she was treating her cancer! I admire her courage and spirit. I have never encountered anyone who smiles so easily like her, whether she’s talking or mere listening to you. She was someone I met 11 years ago, when we quickly became friends as if we had known each other for a long time. She is dearly missed, but I’d like to believe that she is now in a wonderful place where she is well and happy.

You know, it is so confusing when it comes to preventive screening. It’s been in the media all the times, advising ladies to do their health screening annually, like adding cancer markers to your blood test, pap smear and to have mammogram done when you are 40 and above (or earlier, if there is medical history).

Once, I read in the papers, a few years back, about a doctor saying that cancer markers can’t really tell until you’ve got it and the results show a surge of abnormal reading. So, does that mean you’ve got to have an active Big C, in order to detect it? The next question, is detecting the Cancer a good thing? Some said yes but some said no.

Early detection allows you to seek treatment as soon as possible and that supposedly give you higher chance of survivorship. Conversely, some friends share their thoughts with me : why must we find out? – usually people’s health would deteriorate sharply after finding out that they have cancer.  Before that, they had no symptoms and living happily. After getting that fateful result through a biopsy, they became gloomy, depressed, losing will to live, and some became nasty towards family members….Might as well not to seek “trouble” and to live life till the end? Sometimes, what you don’t know, won’t hurt. Everyone has his/her own right to make life’s decision. It’s entirely up to you.

Regardless, for me, I would still do whatever screenings my doctors advised me to. Well, we must be able to trust our doctors, to a certain degree, for them to help us. I’ll cross the bridge when I reach it. I want to be there for my family for as long as I am allowed to. For now, I’ll just take good care of myself and try to live my life with fewer regrets. If I tell you I have no regrets at all, I’ll be fooling myself and you (LOL!). Yes, I have some regrets but nothing so major that I can’t come to terms with them. I live by the rule “If something is beyond your control, don’t waste your energy to change it or go against it; Act on something which you have control over – i.e. yourself, your action, your behaviour, your habits, etc.” I think people who are happier, live a fuller life. I want to live that way and hope my happiness and good energy would then flow into the lives of my loved ones and people around me.

There are some things in life, which we can’t have control over -one of them is diseases, especially when it is hereditary. I was told that not all in the family will be carriers. Therefore, we could try to prolong the period of good health, perhaps by treating our body and mind well. We can start by putting as many good stuffs as possibly can into them. You choose whether you want to stuff  yourself with – healthy food vs junk food, alcohol vs water/juice, smoke vs exercise to make your body works better,  angry and sad thoughts vs happy thoughts, the list goes on…We not only want our body to be strong, we must be mentally calm and strong too. It’s always about the Positive vs Negative. And, Stress is number one cause (amongst others) to many diseases.

Before I leave, I shall put up a poll (below), for you to vote for Cancer Marker and Mammogram screening. Let me hear from you…

~ Alice