Some not so good news. Min Ser's latest biopsy from the EUS and the latest bone marrow test indicates there is a relapse.
Initially it was suspected GVHD, but after a more thorough staining was done from the biopsy, on Friday we got the news that the biopsy shows traces of myeloid sarcoma (chloroma) the same cancer cells caused by AML. Last Friday itself, Min Ser had a bone marrow test in Ampang Hospital, and we got the news today, that a relapse was confirmed.
As tomorrow is a public holiday, we will be going into Ampang Hospital on Wednesday to discuss the next course of action to be taken. Keep us in prayer!
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Monday, 12 May 2014
Saturday, 3 May 2014
Still Undiagnosed
Biopsy result for the samples taken on Wednesday came out yesterday. There is no signs of tumour cells, but the mystery causing inflammation in Min Ser's bile duct and stomach is still undiagnosed. The only thing noticeable is that there are a small amount of lymph nodes near the bile duct. Though it could even be lymphatic vessels (not very clear from the CT Scan). There is also slight thickening of the stomach lining.
Initially the next step was to conduct an EUS — endoscopic ultrasound to collect better tissue samples. But the plan has been revised to have a PET Scan first Monday morning. This will help isolate the kind of lymph nodes there are. An EUS may still be needed, but that is pending on the PET scan results.
So yes, it's still a mysterious ailment at this point. The doctors have yet to rule out a relapse, and are also keeping TB in mind.
Min Ser has been having slight spikes of fever. He also feels hungry often, but can't eat much at one go. He finds it hard to sleep at night as he is itchy as he has been having skin problems even before this incident (previously eczema now some slight fungal skin infection), but jaundice has also been known to cause itchiness.
He is now on antibiotic drips, panadol, anti-fungal cream for the skin, and the usual cyclosporine.
Initially the next step was to conduct an EUS — endoscopic ultrasound to collect better tissue samples. But the plan has been revised to have a PET Scan first Monday morning. This will help isolate the kind of lymph nodes there are. An EUS may still be needed, but that is pending on the PET scan results.
So yes, it's still a mysterious ailment at this point. The doctors have yet to rule out a relapse, and are also keeping TB in mind.
Min Ser has been having slight spikes of fever. He also feels hungry often, but can't eat much at one go. He finds it hard to sleep at night as he is itchy as he has been having skin problems even before this incident (previously eczema now some slight fungal skin infection), but jaundice has also been known to cause itchiness.
He is now on antibiotic drips, panadol, anti-fungal cream for the skin, and the usual cyclosporine.
Monday, 4 March 2013
First day at Ampang Hospital
We arrived early in the morning. Taking the MEX highway from Putrajaya was a good choice. It was smooth traffic all the way until we reached the Kampung Pandan roundabout.
The hospital looks newer than Selayang Hospital, and not as large an area. Navigating was easy, but crowded as expected. We arrived before 8am. After registration, taking of blood, and waiting for results, we were called in to see Dr Chang at 10+am.
He explained the nature of AML to us, as well as the treatment and side effects. Min Ser will have to do 3-4 cycles of chemo. Each cycle will consist of one week of treatment and 2 weeks in hospital. If all goes well, he will be able to go home for a week. The cycle will then start again. The highest risk of infection is during the 2nd and 3rd week during the first cycle. He will have no immunity left. Even his mucous lining will break down, and that's when mouth and throat ulcers will occur, along with lost of appetite and vomiting.
Moving forward, if he responds well to chemo and is in remission (no more cancer cells). A bone marrow transplant may most likely need to be undertaken. Best case scenario would be a complete sibling match. There is a 25% chance of a complete match and 50% chance of a half match. Min Ser has one younger sister. A chance of a match from an unrelated donor is also an option with registries from Taiwan and China. From these registries, there is a 1 out of 2 chance of finding a match.
Understanding what's involved is important as it helps us make informed decisions. We have heard much about what to expect, but I'm sure nothing will prepare us for the reality of it. That being said, we came in to the hospital today decided on seeking treatment. When Dr Chang asked Min Ser if he wants to be warded today. The answer was yes.
The hospital looks newer than Selayang Hospital, and not as large an area. Navigating was easy, but crowded as expected. We arrived before 8am. After registration, taking of blood, and waiting for results, we were called in to see Dr Chang at 10+am.
He explained the nature of AML to us, as well as the treatment and side effects. Min Ser will have to do 3-4 cycles of chemo. Each cycle will consist of one week of treatment and 2 weeks in hospital. If all goes well, he will be able to go home for a week. The cycle will then start again. The highest risk of infection is during the 2nd and 3rd week during the first cycle. He will have no immunity left. Even his mucous lining will break down, and that's when mouth and throat ulcers will occur, along with lost of appetite and vomiting.
Moving forward, if he responds well to chemo and is in remission (no more cancer cells). A bone marrow transplant may most likely need to be undertaken. Best case scenario would be a complete sibling match. There is a 25% chance of a complete match and 50% chance of a half match. Min Ser has one younger sister. A chance of a match from an unrelated donor is also an option with registries from Taiwan and China. From these registries, there is a 1 out of 2 chance of finding a match.
Understanding what's involved is important as it helps us make informed decisions. We have heard much about what to expect, but I'm sure nothing will prepare us for the reality of it. That being said, we came in to the hospital today decided on seeking treatment. When Dr Chang asked Min Ser if he wants to be warded today. The answer was yes.
Saturday, 2 March 2013
Raffles and SGH
We were in Raffles Hospital's Cancer Research Centre early this morning. We meant just to drop off samples for Monday's appointment. But while we were waiting, we were called in to see Dr Daryl. The latest info from yesterday's blood test clearer shows leukemia, thus there is no reason to do further biopsy on the samples we brought.
Our afternoon appointment with Dr Tien brought about the same remarks.
Today's appointments with Dr Daryl and Prof Tien affirms AML. A blood test done in SGH also shows that blasts in Min Ser's blood stream is now higher. This proves that the cancer is progressing quickly and we are advised to seek treatment ASAP. We asked if there was any new development for this type of leukemia in Singaopore, and apparently there isn't. It's still basic untargated chemo.
We thank God that Min Ser's appointment with Dr Chang at Ampang Hospital has been brought forward to Monday morning. A colleague of a friend is actually Dr Chang's brother, and that helped a lot. Truly we have been experiencing God's favour for things to fall into place so quickly and efficiently. We'll be flying back tomorrow morning.
Our afternoon appointment with Dr Tien brought about the same remarks.
Today's appointments with Dr Daryl and Prof Tien affirms AML. A blood test done in SGH also shows that blasts in Min Ser's blood stream is now higher. This proves that the cancer is progressing quickly and we are advised to seek treatment ASAP. We asked if there was any new development for this type of leukemia in Singaopore, and apparently there isn't. It's still basic untargated chemo.
We thank God that Min Ser's appointment with Dr Chang at Ampang Hospital has been brought forward to Monday morning. A colleague of a friend is actually Dr Chang's brother, and that helped a lot. Truly we have been experiencing God's favour for things to fall into place so quickly and efficiently. We'll be flying back tomorrow morning.
Friday, 1 March 2013
A clearer diagnosis
Arrived in Singapore an hour ago. We are staying with friends. We truly appreciate the comfort and convenience of avoiding public transport and crowded places. Not to mention good home cooked food. Thank you Steve and Adelene.
Min Ser's bone marrow results are not yet ready, but this morning we received results of his blood test taken during Monday's procedure. Blast cells, 22% were found in his blood stream which confirms AML.
Looks like we had our clear diagnosis even before take off. If the other 2 doctors concur, then it's pretty clear what next steps need to be taken.
Min Ser's bone marrow results are not yet ready, but this morning we received results of his blood test taken during Monday's procedure. Blast cells, 22% were found in his blood stream which confirms AML.
Looks like we had our clear diagnosis even before take off. If the other 2 doctors concur, then it's pretty clear what next steps need to be taken.
Thursday, 28 February 2013
Appointments in Singapore
It's amazing how quickly events are unfolding. We managed to get two appointments with two haematologists in Singapore. One with Dr Daryl Tan at Raffles Hospital, Monday morning (recommended by Dr Haris) and one with Dr Tien in Singapore General Hospital, Friday afternoon. The SGH appointment was arranged through a friend of a friend of a friend, otherwise it would have been difficult to get an appointment with the head haematologist of SGH blood bank at such short notice.
It is also possible to do a fresh biopsy in Raffles Hospital. If we drop samples in for biopsy, fresh results will be out for Monday morning's appointment.
Flying off tomorrow evening. Praying for clarity and a clear diagnosis.
It is also possible to do a fresh biopsy in Raffles Hospital. If we drop samples in for biopsy, fresh results will be out for Monday morning's appointment.
Flying off tomorrow evening. Praying for clarity and a clear diagnosis.
Wednesday, 20 February 2013
Leukemia?
We arrived early in SDMC. Spoke to Dr Sharmila for a brief moment. She pretty explained what she spoke through the phone yesterday, but she felt sorry that he "Had to be so rare, and that as doctors they are still constantly learning".
We were then referred to a Dr Haris, consultant haematologist. He kindly but clearly explained that the tumour found in Min Ser's duodenum was granulytic sarcoma (chloroma) which points to the cause being a form of leukemia (AML to be exact) and not lymphoma. The rare part is for a tumour to form outside the blood before showing signs in the blood. As of today, Min Ser's blood counts are still normal, save slight anemia. Even rarer for it to appear in the gastrointestinal tract. Usually it's found in the skin or other major organs.
He suggested that as there is still some time (it has yet to manifest in the blood) we might like to have 2nd or 3rd opinions, and even fresh biopsies of the sample. Dr Haris does not recommend any treatment until we are 100% sure of the diagnosis. For the very reason that there is no localised trestment for leukemia. The treatment itself carries risk of mortality caused by infection. This is because the treatment is crude and untargeted. Killing the cancer cells involves killing the healthy cells completely. Leaving him with no immunity. But his advantage is that he is young, and likely to have less complications.
In the meantime we will still proceed with the spyglass procedure tomorrow, and a bone marrow sample will be taken the next Monday for a clearer picture.
We walked out feeling numb, yet calm. The diagnosis just kept getting worse and worses, but I felt that God has already told me in my heart that the diagnosis wouldn't be something simple. Yet hoping for the best and not wanting to be negligent, we will proceed to arrange for more opinions.
We were then referred to a Dr Haris, consultant haematologist. He kindly but clearly explained that the tumour found in Min Ser's duodenum was granulytic sarcoma (chloroma) which points to the cause being a form of leukemia (AML to be exact) and not lymphoma. The rare part is for a tumour to form outside the blood before showing signs in the blood. As of today, Min Ser's blood counts are still normal, save slight anemia. Even rarer for it to appear in the gastrointestinal tract. Usually it's found in the skin or other major organs.
He suggested that as there is still some time (it has yet to manifest in the blood) we might like to have 2nd or 3rd opinions, and even fresh biopsies of the sample. Dr Haris does not recommend any treatment until we are 100% sure of the diagnosis. For the very reason that there is no localised trestment for leukemia. The treatment itself carries risk of mortality caused by infection. This is because the treatment is crude and untargeted. Killing the cancer cells involves killing the healthy cells completely. Leaving him with no immunity. But his advantage is that he is young, and likely to have less complications.
In the meantime we will still proceed with the spyglass procedure tomorrow, and a bone marrow sample will be taken the next Monday for a clearer picture.
We walked out feeling numb, yet calm. The diagnosis just kept getting worse and worses, but I felt that God has already told me in my heart that the diagnosis wouldn't be something simple. Yet hoping for the best and not wanting to be negligent, we will proceed to arrange for more opinions.
Tuesday, 19 February 2013
Lymphoma?
Dr Sharmila called. Biopsy results are out and the ulcer in Min Ser's duodenum turns out to be a tumour that could point to a form of lymphoma. We need to see Dr Sharmila and a haemotologist will better explain the situation tomorrow.
Monday, 11 February 2013
CT scan and prognosis
11am
He's been on slight water and drips since yesterday afternoon. He now has to drink 3 cups of water to undergo CT scan. Must be so uncomfortable. Poor dear felt so bloated after the procedure. It's like the MRI machine you see in the movies. His only complaint (besides the bloatedness) was that the hospital was using a competitors product. "GE one better". Ok, if you say so dear.
2pm
Based on CT scan results. There is no obvious blockage (tumour or stone) in the bile duct. Nothing in the gallbladder, nor is there any mass pressing in from the outside. The only cause could be something IN the bile duct. We were presented with 3 possibilities:-
1. Tumour
2. Tibi in the bile duct
3. Autoimmune pancreatitis
A Dr Krishnan, Liver Hepatic Biliary specialist from Selayang hospital (apparently it's the leading hospital in Malaysia for liver ailments) will be consulted on his thoughts.
4.30pm
We were visited by Dr Krishnan, and he ruled out option no 3 (the stricture was a bit too high in the bile duct). No 2 was very very rare, but a possibility. No 1 is most likely (if Min Ser was 60 years old, he will say it was without a doubt, and would suggest surgery.)
But because of the situation (Min Ser being 30 years old), we were presented an option of a relatively new procedure using a spyglass. A scope within a scope (ERCP), a tiny camera which would help give better on light on the lesion. There are only 2 hospitals in Malaysia which has this equipment, and Selayang is one of them.
We agreed without a doubt. We were hoping for a diagnosis that would prevent surgery.
He's been on slight water and drips since yesterday afternoon. He now has to drink 3 cups of water to undergo CT scan. Must be so uncomfortable. Poor dear felt so bloated after the procedure. It's like the MRI machine you see in the movies. His only complaint (besides the bloatedness) was that the hospital was using a competitors product. "GE one better". Ok, if you say so dear.
2pm
Based on CT scan results. There is no obvious blockage (tumour or stone) in the bile duct. Nothing in the gallbladder, nor is there any mass pressing in from the outside. The only cause could be something IN the bile duct. We were presented with 3 possibilities:-
1. Tumour
2. Tibi in the bile duct
3. Autoimmune pancreatitis
A Dr Krishnan, Liver Hepatic Biliary specialist from Selayang hospital (apparently it's the leading hospital in Malaysia for liver ailments) will be consulted on his thoughts.
4.30pm
We were visited by Dr Krishnan, and he ruled out option no 3 (the stricture was a bit too high in the bile duct). No 2 was very very rare, but a possibility. No 1 is most likely (if Min Ser was 60 years old, he will say it was without a doubt, and would suggest surgery.)
But because of the situation (Min Ser being 30 years old), we were presented an option of a relatively new procedure using a spyglass. A scope within a scope (ERCP), a tiny camera which would help give better on light on the lesion. There are only 2 hospitals in Malaysia which has this equipment, and Selayang is one of them.
We agreed without a doubt. We were hoping for a diagnosis that would prevent surgery.
Sunday, 10 February 2013
First day in hospital
6.00am
We were on our way to Kedah. We somehow managed to leave the house as planned, 5.30am. It was a restless night before, as Min Ser was constantly uncomfortable, tossing and turning, walking around, he said it was his gastric, and it was uncomfortable to lie down.
We were seriously considering canceling our trip and checking him into hospital. Once we saw the traffic on the NKVE we thought no way he can survive the traffic or the trip. We entered into Kota Damansara and headed to Sime Darby Medical Centre.
Upon arrival, we headed straight to the ER. Doc's conclusion after all our explanation and looking at his symptoms was... jaundice. Now we just have to discover the cause.
9.30am
He was on a wheelchair and wheeled for ultrasound and X-ray. The gastroenterologist we were referred to was Dr Sharmila. She presented the most likely cause to be gallstones obstructing the bile duct. To know for sure an ERCP needs to be done. Without further delay, has was prepared for the procedure.
11am
His hepatic ducts were very dilated due to the obstruction and high bilirubin levels. There was no obvious stone discovered, but his bile duct was very tight, it was difficult, but they managed to place a plastic stent inside his bile duct. With stent in place his liver functions should return to normal over the next couple of weeks.
An ulcer was also found in his duodenum. The suspicious part is that it isn't a clean ulcer. There are lumpy parts on the outer parts of the circumference, a sample of the area was taken for biopsy. Nothing more can be done, and a CT scan is scheduled for tomorrow.
12.30pm
Min Ser was placed in the ward for recovery, but he experienced extreme pain in his abdomen (pain level 8). He was given a dose of pethidine to relief the pain.
We were on our way to Kedah. We somehow managed to leave the house as planned, 5.30am. It was a restless night before, as Min Ser was constantly uncomfortable, tossing and turning, walking around, he said it was his gastric, and it was uncomfortable to lie down.
We were seriously considering canceling our trip and checking him into hospital. Once we saw the traffic on the NKVE we thought no way he can survive the traffic or the trip. We entered into Kota Damansara and headed to Sime Darby Medical Centre.
Upon arrival, we headed straight to the ER. Doc's conclusion after all our explanation and looking at his symptoms was... jaundice. Now we just have to discover the cause.
9.30am
He was on a wheelchair and wheeled for ultrasound and X-ray. The gastroenterologist we were referred to was Dr Sharmila. She presented the most likely cause to be gallstones obstructing the bile duct. To know for sure an ERCP needs to be done. Without further delay, has was prepared for the procedure.
11am
His hepatic ducts were very dilated due to the obstruction and high bilirubin levels. There was no obvious stone discovered, but his bile duct was very tight, it was difficult, but they managed to place a plastic stent inside his bile duct. With stent in place his liver functions should return to normal over the next couple of weeks.
An ulcer was also found in his duodenum. The suspicious part is that it isn't a clean ulcer. There are lumpy parts on the outer parts of the circumference, a sample of the area was taken for biopsy. Nothing more can be done, and a CT scan is scheduled for tomorrow.
12.30pm
Min Ser was placed in the ward for recovery, but he experienced extreme pain in his abdomen (pain level 8). He was given a dose of pethidine to relief the pain.
Saturday, 9 February 2013
The beginning
Min Ser came home unwell. He's been having brownish urine for more than a week and pale coloured stools. It's then I noticed his eye whites were yellow. Definitely not normal... googled the symptoms, and we were presented with possible jaundice. Yikes! The list of causes were from liver inflammation to liver cancer. Hep A, Hep B, hep C?
He has been having ongoing gastric for the past 2 months. Some days worse than others. This seem like one of those days.
Tomorrow is the eve to Chinese New Year! We're to travel to Kedah tomorrow. Our baby Jo is not with us either... we miss her. His situation settled after some rest, so we thought, hey... let's see what happens tomorrow.
He has been having ongoing gastric for the past 2 months. Some days worse than others. This seem like one of those days.
Tomorrow is the eve to Chinese New Year! We're to travel to Kedah tomorrow. Our baby Jo is not with us either... we miss her. His situation settled after some rest, so we thought, hey... let's see what happens tomorrow.
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