24th Month into Glivec

2 years into Glivec. We are optimistic and thank God for the blessings we received to see Dad doing well. On the last CT Scan we did not see any change to the size of the tumour. It is still a piece of good news as the medication is working to suppress the growth.

At our most recent follow-up consultation with the oncologist, we were told that the tumour has after all shrunk to a safe size for surgery. However, the surgery will not be focused on one part only i.e. removal of a part of the stomach. In fact, it would also require removing a part of the liver and the adrenaline glands. Thereafter, dad may still be required to continue with the medication. Dad was stunned and I saw that he was perturbed by the news. He told the Dr that he would not consider multiple major surgeries due to age and medical condition. The Dr then advised that he should continue with the current prescription. We shall see how it goes in the next scan.

Dad is still going strong despite the GISTs. He is a happy-go-lucky guy, strong-willed and an independent man. His next CT Scan will be due in November. Continue to pray for good results….Meanwhile, he just carries on with his daily activities, never fail to exercise early in the morning on daily basis, weather permitted. Once in a while mom and him will go for a holiday or two, nearby.

On his 78th Birthday, we celebrated in the revolving restaurant at the tallest tower in the country, hosted by the owner himself. Thank you so very much, our dear friend. I was so happy to see my parents enjoying themselves, VVIP treatment at that. So did my brother, sister-in-law, niece and nephews. Missing those who couldn’t join us on that evening. Such wonderful birthday for Dad. Glad I got them to travel down to Kuala Lumpur for this special celebration. Happy Blessed Birthday, Dad and we love you lots!

If you have followed my blog posts since the beginning, you’ll know that my dad has much influence on me growing up. I am who I am because of him. He showered upon me unconditional love, support and guidance. Since very young, he thought me about responsibility, being independent, decision making, problem solving and leadership. My dad chose to teach me to fish rather than fishing for me. Thank you, Dad. You are the best! All I want is to see him happy and live a fulfilled life. Besides being a great father, he is a wonderful, loving and romantic husband to mom. He is such a rare gentleman. Loving them both to the moon and back. Cheers to love and life.

~ 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.