Not much progress since the last update. He's not in more or less pain, pretty much status quo. He did feel like drinking juice and soya yesterday, but not today.
He is still being given 'milk' via IV. Yes 'milk' within quotation marks. When you ask a nurse "what is that" and she says "susu" apparently she doesn't literally mean milk. I don't think it's safe to inject real milk directly into a person's blood stream. It was probably the most convenient answer which doesn't require too much explanation.
Anyway, I did more research and the accurate solution he is being given is TPN Kabiven. TPN for Total Parenteral Nutrition. It contains a balance of various substances like amino acids, dextrose, lipids, etc. It should be enough to sustain even if he doesn't want to eat or drink. He will be on TPN for another next two days if needed.
Today's Counts:
WBC: 0.3
HB: 8.2
P: 32
Wednesday, 7 August 2013
Monday, 5 August 2013
Day +6
He's still in pain. Mucositis is at a severe grade 4. Morphine now at 1.2 ml per hour (max he can take is 2ml) but trying to avoid having a higher dose as it can cause nausea.
Dr Chang mentions don't have to eat or drink. Milk, water and meds can be given intravenously.
For some reason, I find the concept of milk given intravenously highly intriguing. Vitamins are added to a huge (biggest I've ever seen) IV bag of milk (maybe ensure?). Total 1206 ml, 800 kcal, which will be given over a span of 12 hours.
His platelet count is low, cracked and dry lips starting to bleed. Platelets to be transfused once ready. He managed to sleep off most of the day but he's now playing a video game on his laptop.
Today's counts:
WBC: 0.2
HB: 8.6
P: 18
Dr Chang mentions don't have to eat or drink. Milk, water and meds can be given intravenously.
For some reason, I find the concept of milk given intravenously highly intriguing. Vitamins are added to a huge (biggest I've ever seen) IV bag of milk (maybe ensure?). Total 1206 ml, 800 kcal, which will be given over a span of 12 hours.
His platelet count is low, cracked and dry lips starting to bleed. Platelets to be transfused once ready. He managed to sleep off most of the day but he's now playing a video game on his laptop.
Today's counts:
WBC: 0.2
HB: 8.6
P: 18
Sunday, 4 August 2013
Day +5
Mucositis is getting worst. Very painful. He now can't really talk. Imagine having an ulcer but this time all over the mouth and throat and possibly down the GI tract.
Things like soft pear and watermelon is painful to swallow. So purely on liquids now. Light cream soup with blended veggies, soya bean drink, ensure choc milk, chrysanthemum and barley.
Doc says it will last about a week. Pain killer given (but only slightly effective) is small doses of morphine in drip
Today's counts:
WBC: 0.1
HB: 8.4
P: 35
Things like soft pear and watermelon is painful to swallow. So purely on liquids now. Light cream soup with blended veggies, soya bean drink, ensure choc milk, chrysanthemum and barley.
Doc says it will last about a week. Pain killer given (but only slightly effective) is small doses of morphine in drip
Today's counts:
WBC: 0.1
HB: 8.4
P: 35
Friday, 2 August 2013
Day +3
He is starting to have mucositis - inflammation in the GI tract, resulting in ulcers on the tongue, mouth and throat. No treatment, just pain killers if he cannot take the pain. He also needs to observe proper and frequent oral hygiene and drink lots of water. He now finds chewing discomforting. So will eat softer food starting tomorrow.
He also had one episode of bad diarrhea and slight vomiting this afternoon. But overall he is not weak. He still moves around the room on his own and doesn't have to lie down.
Though this is all expected effects of radio and chemo + post transplant patients, we were hoping he may be spared the worst of it. So yups, praying the ulcers go away really soon.
Today's counts (down trend overall):
WBC: 0.2
HB: 8.7
P: 60
He also had one episode of bad diarrhea and slight vomiting this afternoon. But overall he is not weak. He still moves around the room on his own and doesn't have to lie down.
Though this is all expected effects of radio and chemo + post transplant patients, we were hoping he may be spared the worst of it. So yups, praying the ulcers go away really soon.
Today's counts (down trend overall):
WBC: 0.2
HB: 8.7
P: 60
Thursday, 1 August 2013
Day +2
So far all is well, Min Ser is fine today. His red blood count are on the uptrend. White blood and platelet are coming down a little. But he feels ok as a whole except for a sore throat which makes it slightly hard to swallow (a side effect of the chemo). Otherwise he is eating and drinking well.
Sue Min went home yesterday afternoon. She feels well post collection and the removal of the femoral line was painless even without any anesthetic.
So as of now, still waiting. He will have small doses of chemo (via syringe) on day +1, +3, +6, +11. So looks like we'll be here for another 10 days at least.
Sue Min went home yesterday afternoon. She feels well post collection and the removal of the femoral line was painless even without any anesthetic.
So as of now, still waiting. He will have small doses of chemo (via syringe) on day +1, +3, +6, +11. So looks like we'll be here for another 10 days at least.
Tuesday, 30 July 2013
Transplant (Stem Cells Infusion) Done
Sue Min's stem cells were infused to Min Ser at 3.45pm and done in 2 hours. It's basically like blood transfusion, but of a lighter red colour (more translucent). No averse reaction during transfusion. Total collection was 6.87 mil. So yay, above the 5 mil targeted!
Post transfusion days start with a (+). Ie: starting tomorrow is +1. Now to wait for his counts to go down (+1 onwards) and when Sue Min's stem cells engraft well, his counts will pick up again (+10 to +14). Once his white blood cell count reaches <1.0 and he feels well, he can be discharged.
Post transfusion, 3 months, 6 months and 1 year are milestones. So the one year goal is to reach day +365 in good health!
Counts as of today:
WBC: 0.35
HB (red): 8.9
Platelet: 77
Post transfusion days start with a (+). Ie: starting tomorrow is +1. Now to wait for his counts to go down (+1 onwards) and when Sue Min's stem cells engraft well, his counts will pick up again (+10 to +14). Once his white blood cell count reaches <1.0 and he feels well, he can be discharged.
Post transfusion, 3 months, 6 months and 1 year are milestones. So the one year goal is to reach day +365 in good health!
Counts as of today:
WBC: 0.35
HB (red): 8.9
Platelet: 77
Monday, 29 July 2013
Still Waiting
There's no transfusion of stem cells/ transplant today. Sue Min has to stay another night for a second collection tomorrow. Collection amount was 3.27mil stem cells, but for Min Ser they want to target for at least 5mil stem cells.
The stem cell collection process was about 5 hours which consists of 12 cycles. Sue Min had to be bed ridden for that time frame where the machine collects certain amounts of blood from her femoral line, separates the stem cells and return the other parts of the blood to her. She is feeling ok but tired.
Min Ser is doing better the pass two days. Less nauseous, able to eat decent amounts, and his counts are still not that low yet. So yeah, so far so good. Just need another 2 mil stem cells tomorrow!
Good job Sue Min, you can do it!
The stem cell collection process was about 5 hours which consists of 12 cycles. Sue Min had to be bed ridden for that time frame where the machine collects certain amounts of blood from her femoral line, separates the stem cells and return the other parts of the blood to her. She is feeling ok but tired.
Min Ser is doing better the pass two days. Less nauseous, able to eat decent amounts, and his counts are still not that low yet. So yeah, so far so good. Just need another 2 mil stem cells tomorrow!
Good job Sue Min, you can do it!
Saturday, 27 July 2013
Last Day of Chemo
As of today, Min Ser has gone through 6 sessions of radiotherapy and one dose of chemo (cyclophosphamide 4300 mg). This afternoon will be his last dose of chemo (post transplant will only be little doses of chemo via syringe).
He is perpetually nauseous, weak and tired. No desire to eat much, but he still tries to drink soup, choc milk, eat some nestum and apples (peeled).
He has vomited 3 times since radiotherapy started. In comparison, he has only vomited once during the first 3 cycles. He did not sleep well due to the nausea. We have asked doc to prescribe sleeping meds for tonight. Hope he can rest well and stop feeling nauseous.
There will be no chemo tomorrow, just rest and wait for the transplant on Monday (that is if they manage to collect 3mil - 5 mil stem cells). 98% of the time it'll be enough. Usual collection is 7-8 mil. The last collection they had was a record 20mil! Seems he was a big guy and maybe a bit overdosed on GCSF.
So ya, lets pray for enough stem cell collection and for Min Ser to stop feeling nauseous so he can rest and eat well.
He is perpetually nauseous, weak and tired. No desire to eat much, but he still tries to drink soup, choc milk, eat some nestum and apples (peeled).
He has vomited 3 times since radiotherapy started. In comparison, he has only vomited once during the first 3 cycles. He did not sleep well due to the nausea. We have asked doc to prescribe sleeping meds for tonight. Hope he can rest well and stop feeling nauseous.
There will be no chemo tomorrow, just rest and wait for the transplant on Monday (that is if they manage to collect 3mil - 5 mil stem cells). 98% of the time it'll be enough. Usual collection is 7-8 mil. The last collection they had was a record 20mil! Seems he was a big guy and maybe a bit overdosed on GCSF.
So ya, lets pray for enough stem cell collection and for Min Ser to stop feeling nauseous so he can rest and eat well.
Tuesday, 23 July 2013
1st Day Radiotherapy
First of all thank you all for your prayers for us and Sue Min too. She has recovered and will be coming into hospital this Thursday for her first GCSF shot, and will be traveling to and fro from home daily until Sunday, when she will stay over for the transplant on Monday. Some of the side effects of the GCSF shots are body aches as the body is stimulating production of stem cells. Pray that she will have safe journeys to and fro from home to hospital, and she won't experience the aching side effects.
Today was Min Ser's first day of radiotherapy. We arrived Hospital KL at 8.30, and his first session of radio was from 9.30-10.30. Though according to Min Ser total exposure time (to radiation) was approximately 10 to 15 mins. There are 2 sessions a day, 6 hours apart. So in between he has a make shift room and bed to rest in.
The effects of radiotherapy was very evident and quick. Right after his first session he felt really weak, had a bad headache and was nauseous. He had to lie down (though couldn't really rest due to the headache). He says it was worst than chemo, especially since he could feel the effects so quickly. It seemed like 10 mins of radio felt as bad as 3 days of high dose chemo. With 2 days (4 sessions) to go, pray he will have the strength to go through it and that he will recover quickly in between sessions.
He managed to catch some rest before dinner, ate a fairly decent amount, and mentioned he felt slightly better, but still very tired. He's resting again now.
Today was Min Ser's first day of radiotherapy. We arrived Hospital KL at 8.30, and his first session of radio was from 9.30-10.30. Though according to Min Ser total exposure time (to radiation) was approximately 10 to 15 mins. There are 2 sessions a day, 6 hours apart. So in between he has a make shift room and bed to rest in.
The effects of radiotherapy was very evident and quick. Right after his first session he felt really weak, had a bad headache and was nauseous. He had to lie down (though couldn't really rest due to the headache). He says it was worst than chemo, especially since he could feel the effects so quickly. It seemed like 10 mins of radio felt as bad as 3 days of high dose chemo. With 2 days (4 sessions) to go, pray he will have the strength to go through it and that he will recover quickly in between sessions.
He managed to catch some rest before dinner, ate a fairly decent amount, and mentioned he felt slightly better, but still very tired. He's resting again now.
Thursday, 18 July 2013
Hickman Line In
The procedure to insert Hickman Line this morning went well. A relatively straightforward procedure but as with all procedures there is always a slight risk. But it was quick and Min Ser is feeling ok. That is until the anesthesia wears off... but he'll be given pain killers to manage any pain.
He was on local anesthetic so he's not too drowsy. He will soon learn how to keep the incision areas clean to avoid any infection. The Hickman Line will be used for all future infusions and drawing of blood.
We have also been to see the radiologist in KL GH for consultation and measurements. All set for Total Body Irradiation (TBI) on Tuesday to Thursday.
Do pray for Sue Min though, as she is unwell, down with diarrhoea since yesterday. Pray she recovers quickly and completely as she rests at home. It will be tiring as a donor and also to lower the risk of any contagions being passed on to Min Ser. May she be in the peak of health in time for the GCSF shots (25/7-28/7) and transplant (29/7). Get well soon Sue Min, take care.
He was on local anesthetic so he's not too drowsy. He will soon learn how to keep the incision areas clean to avoid any infection. The Hickman Line will be used for all future infusions and drawing of blood.
We have also been to see the radiologist in KL GH for consultation and measurements. All set for Total Body Irradiation (TBI) on Tuesday to Thursday.
Do pray for Sue Min though, as she is unwell, down with diarrhoea since yesterday. Pray she recovers quickly and completely as she rests at home. It will be tiring as a donor and also to lower the risk of any contagions being passed on to Min Ser. May she be in the peak of health in time for the GCSF shots (25/7-28/7) and transplant (29/7). Get well soon Sue Min, take care.
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