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.

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9 Months into Glivec/ Gleevec

It was mid April that Dad was due to his visit to his Oncologist and Endocrinologist. He looks well and we’re glad that know that he has put on some weight. He lost quite a lot of weight last July. Good to note that he is gradually getting back to his usual weight. His appetite is good too! He is eating 7 meals a day. These are small meals and proved to be good for his blood sugar.

At this visit, his Oncologist told us that he hardly felt the tumor. That’s a good sign but he should be due for the next CT scan (6 months apart) in June. He will still continue with Glivec as it is doing its job well so far. New side effect noticed was the sign of brittle nails. They look like old, dried and peeling nails. No pain or any discomfort felt, just the look of the nails. His doctor took a few photos of the brittle nails to report back to the manufacturer, I guess. We couldn’t find any recorded side effect that’s pointing to nail issues. I was thinking could be happening to Dad as an isolated case or Asians perhaps, due to our livelihood and diet?

I also notice a slight dark line on his lower lid but the doctor said that has nothing to do with the drug but more like dark circles. I shall take a note on that and observe it for a longer period of time. His previous water retention on the left ankle and eyes have subsided.

Thereafter, we went over to see his endocrinologist. Dad’s doctor was so pleased with his records and was amazed by his discipline in caring for his health by diligently exercising on daily basis, watching his intake of food and also checking his blood sugar and recording them without fail. By monitoring closely, he gets to understand how certain foods will affect his blood sugar and he will take steps to control himself. On that, I must salute my Dad. He is his own doctor as he wants to be well. That relieves me from worries. I am so proud of him.

My gratitude extends to his jovial and friendly Oncologist, Dr Mellor and wonderful Endocrinologist, Dr Chan for their attention and encouragement. Also to Max Foundation and Novartis for the patient assist program. Support from these people help a lot and let us deal with GIST more positively and giving us hope. We are tracking his progress from each visit to the doctors and so far, Thank God, my dad has been doing well. We shall keep monitoring and praying for his well-being.

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.

Dad’s Health Journal

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I decide to create a new category in my blog, specially dedicated to a great man, my father. This shall be his health journal. I shall update his progress here, sharing with my wonderful readers, the journey dad would be taking in treating his condition.

Dad was a planter all his career life. He successfully managed rubber and oil palm plantation, from his first estate to the following, till he retired. His skills and knowledge are greatest assets to any planter. Till today, he still can remember very clearly the processes involving seeding to replanting to harvesting and so on.

Beginning of July 2014, out of the blue mom told me that dad has been losing appetite and weight ever since Father’s Day. She didn’t want to tell me much earlier for fear I’d be worried sick. Whenever I called them, they sounded their usual self. His blood sugar shot up too. His occasional nose bleeds, more like spotting I was told. Dad said he saw the local ENT but they couldn’t find anything wrong with the nose. Something was amiss but I didn’t know what. My gut feelings told me that he needs proper medical examination without any further delay.

The list of examinations started from 7/7/2014. Less than 2 weeks to his birthday. I was glad that dad managed to see Dr SP Chan of SJMC. Her calendar was full. I tried asking for an appointment but to no avail. I went into the medical centre online appointment and wrote the reasons for such urgency for this appointment to be on 7/7/2014. I was so relieved that someone from the calling centre called me on a Saturday evening to speak to me in response to that online submission.

Dr Chan discovered a few things from the blood test, x-Ray and ultrasound on the chest and liver. She immediately referred dad to a renowned gastroenterologist. Thank God, Dr Yin advised dad to see him early the next morning. Meanwhile, dad was put on insulin and change of Blood Pressure (BP) medicine. Ms Yong, a consultant at the diabetes care was so patient and kind. She briefed us about cause and effect of diabetes, then taught mom and dad on the use of insulin. This was something very foreign to us. Mom kept asking if he could do without the insulin. I consoled her that if he could, the good doctor would have prescribed it. Let us follow the doctor’s advice and act accordingly. I’m sure dad’s condition will become better under the care of Dr Chan.

The following morning, another blood test was called for. Dr Yin ordered for a CT Scan in next morning. In the meantime, we were all cheering dad on for the insulin and blood sugar self-tests. These things were new to him and being clumsy at them was only natural. I could see he painstakingly try to hide his anxiety and frustration from us. For all the medical exams that needed fasting, I fasted together with him. That was the most I could do to share his discomforts. I wished that I could cast them away and put things right again. But, that’s impossible. So instead, I shall pray to Almighty God for serenity, courage, strength and patience. I have to be strong for the family.

Following the CT Scan, dad had to returned for endoscope. I could feel mom and dad were getting more and restless and anxious by the day. I kept reminding him not worry about anything else except to take care of himself following doctors advice. We shall soldier on, one way or another. I am sure when there is a will, there is a way. At time like this, I am most grateful for my husband. He has been the pillar of strength throughout the whole process. He made mom and dad felt more relaxed with his constant assurance.

From the endoscope results, dad was referred to an Oncologist. As I was still concerned about dad’s nose bleed, Dr Yin referred us to an ENT specialist, Dr Puravi. Another wonderful doctor. He introduced neti pot to us. I read about the benefits of neti potting some years back. I was most glad to know more now.

Our meeting with Dr Matin, the Oncologist was another pleasant encounter. Again, thanking our stars and thank God for letting us meet all the wonderful doctors at time like this. Doctor indicated the condition as GISTs. The mass seen in the liver showed the spread of the tumours from the stomach. However, we had to wait for the IHC report for any treatment to be prescribed. Highly likely via a drug called Gleevec (or, Glivec) if the type of GISTs matches. Just yesterday, I went to see Dr Matin for the IHC report. It was confirmed GISTs and the type which can receive Gleevec. That was one good news, I guess. Hopefully, dad’s tumour would respond to the drug and tumours shrunk. We shall see the doctor again in a month’s time to check how he responds to the medication.

For now, we skip around the C word. We do not want to scare mom, if she hasn’t known as much. I need her to be her normal self. No point getting upset or being pessimistic about the whole issue. Dad needs more positive energy around him and I would very much like to keep it that way. You know, mind over body. Moreover, we have the medication and a good doctor with us. There is always hope.

To sum it all up, thank you SJMC and all those great doctors mentioned herein. Not to forget those hardworking support staffs who make all things bearable, with as simplest gesture as an understanding and consoling smile. Smiles were readily exchanged along the corridor, clinics, cashiers…..everywhere!

Thank you so very much!

~ Alice N.


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