regime#8, cycle 2

cycle 2

[21 Apr 2009, 03:23:53 PM]

It's been awhile since my last update. It has been a challenging two-month and still is as of now. The side effects are not quite the same in intensity as my previous ones. So far, I have lost more than 2kg, and is back to my pre-diagnosis weight of 41.3kg. I look so ghastly.


When I went to see Dr Wong early this month, I highlighted to her the side effects I was having in cycle one. I was feeling better (end of cycle 1) but alas, before I could recharge and rebuild, cycle 2 began. I was specific in describing my problems and Dr Wong was able to prescribe medications to relief the side effects. Though the medications did help, I still had to suffer at least two days on the weeks I was on my chemo oral drug.


After consulting Zhang yishi, I drank special-need milk powder with ginger juice. At least the milk supplies 50% (1 packet) of the daily nutrients required and is a good source of protein. Perhaps that helps in maintaining my weight inspite of same side effects. I think I'm getting to know the medications (and the accompanying effects) I'm on better now.


Dr Wong mentioned that perhaps we needed to think about marginal benefits vs bad side effects and quality of life of this regime. When I went to see Dr See last Saturday, she suggested continuing as long as the marker is below 200, but with adjusted dosage of sorafenib. In case you are wondering what side effects I had, well, on the day I took Navelbine (which is already low dose), I vomitted for at least 2 hours. The oden tablet so far only worked once. I think I'm the puking kind -- puke to get better. Concurrently, I had diarrhea. Sometimes I had low-grade fever on the same day. The food-poisoning type of symptons lasted two days. The vomitting would stop but not the diarrhea. That explained my inability to be out of my room, because I needed to sprint to the toilet. My appetite was greatly affected too, or should I say I had no appetite to eat or drink. Just lying on the bed, fighting it out with the side effects, which I'm getting better at.


Off topic, I laughed when I read the article in the newspapers about brown fats and researchers are thinking of using it to help people lose weight. I even saw it on the news. Ha!


For reference:
side effects: vomitting, diarrhea, thinning hairline, stomach and abdominal wind (lots!), dry skin, pain at middle joint of thumbs, abdominal cramps, always wanting to burp (too much air in stomach), stomach and intestines always making "symphony sound"

medications: oden (anti-vomitting), aromag (antacid --- this is really effective) and one more for diarrhea

diet: stay off vegetables that cause wind, liquid diet like porridge and special-needs milk with ginger juice, vitagen on no-diarrhea days to replenish (?) good bacteria, black dates with black sugar and ginger water to boost platelet count, lotus root soup with peanuts (those with skin on) to boost platelet count, no spicy food as it burns my tongue

others: frame of mind is unlike previous regime, i.e. no forgetfulness, no memory loss, and is able to think logically and analyse (on no side-effects days), less mood swings except on those 2 days (really feel like dying!)


Sorry I'm not up to having visitors. I appreciate your thoughts and concern. Till the next update, take care!

regime#8, day2

Regime #8, day 2

[3 Mar 2009, 05:04:36 PM]

After a week of deliberation, it was decided that I should try a new cocktail. Of course I could rest a little longer and not do anything. I chose not to wait. With the CNY celebrations and low platelet count rest period, I believed I had rested almost two months.


Decided to do the sorafenib and navelbine oral regime. I think my veins, my flesh, and myself need recuperating. Dr Wong put me on a low dosage first and would monitor my response. I chose to start yesterday, being a new month. Five hours after I consumed the pills, I became a "sprinter"... sprinting to the toilet! I had diarrhea which lasted till almost ten at night. This was in stark contrast to the previous regime where I had constipation. Such extreme! Afraid of being dehydrated and weak, I drank "porridge water". However, the more I drank, the more I lost. The toilet bowl was totally bombed out! Hahaha.


I sent out an sms to LX requesting for prayer support as I was feeling really lousy and miserable. I skipped my BSF class last night and asked Estella to help me collect the notes. Don't believe I could and should attend class at all in that state. I was glad when the "sprinting" finally stopped before ten.


This morning the helper made a concoction of "black dates with black sugar and ginger slices". I was greeted with a cup of warm "porridge water" when I woke up, which soothed my empty stomach. I am still experiencing occasional abdominal pain, but certainly feeling much better now. ^_^

regime#7 stopped

regime #7 stopped

[24 Feb 2009, 06:16:49 PM]

My low platelet count caused some inconvenience, confusion and rescheduling of appointments. A backtrack of my days.

Saw the Chinese physician on 6th Feb.
Went to Dr See's clinic on 7th Feb (after receiving a call as I forgot about it).
Did a heart echo on the same day. Heart functions were normal. Put on anti-hypertension medication as my blood pressure is still high. Forgot to bring cardigan out that day and was freezing cold in the clinics.


Cycle 5b was re-scheduled to 17th Feb, but I was supposed to see Dr Wong, my new onco, on 19th. Both were too close. I approached the friendly and helpful staff to ask if it was alright to ask Dr Wong about the chemo and her appointment being so close apart. Meanwhile, I had to re-schedule my appointment with the liver specialist, which was also on the 17th. The clinic only reverted a few days later and told me not to go for cycle 5b on 17th, but instead keep the appointment with Dr Wong.


Well, my platelet count is back up from a low of 81 to 173, after drinking peanut soup and "black dates plus other stuff" water. The low count triggered the alarm bells and "Shuai Ge" almost called everyone he knows or has one way or other plays a part in my treatment. I co-operated by drinking whatever he bought to boost my platelet count. He was worried because WZ is still having problem boosting hers, and did not want the same for me. Good thing mine managed to climb back to within range again. Phew!


Whilst the platelet count and other blood count were within normal range, the marker doubled (132). Dr Wong reckoned that the current regime is no longer working for me and suggested not to proceed. I opted for a week's rest and to mull over the next regime. She listed the options, which are the same as what Dr See mentioned before. It's quite scary to think I have already tried so many drugs and have yet to find one combo that will keep the naughty cells at bay. Now I am having drug-related side effects, like high blood pressure. I would be lying if I tell you I'm not frightened. But as the good doctor said, "Let's treat you and not the number."


I will be seeing Dr Wong again this Thursday. Hopefully by then we would be able to reach a decision: either the one painful on the pocket, kinder to my veins or the one not as painful on the pocket but torturing on my veins. Or best, rest some more and it will be not painful on the pocket yet and resting for the veins. Hahaha!


Oh, I met Fleur (as Dr Wong is her onco too) last Thursday. Just that I didn't expect it to be so soon, especially on my first appointment with Dr Wong. Now you know why I blog my appointments. ;)

cycle 5b postponed

cycle 5b postponed

[9 Feb 2009, 09:34:27 PM]

As titled, cycle 5b today has been postponed to next week. My platelet count was low (probably the lowest so far) and did not hit the minimum level stipulated by my doctor. I was put on hypertension medication on Saturday after seeing the cardiologist as my blood pressure is still high. This, I believe, is more drug-related. Is my body showing signs of fatigue? Will see how next week.

Rojak II, cycle 5a

Rojak II, cycle 5a

[2 Feb 2009, 08:55:43 PM]

Okay, I'm lazy to think of a proper title for this entry. This is what I'm craving for of late: rojak. However, the "food police" in the house refuses to let me have it too often. He did buy me sometimes on the way back home, so I wasn't deprived, just "gian" (i.e. craves).


Had my treatment this afternoon. It is back to avastin+gemox regime. The plug was really long and many nurses turned to see what regime I was on. Was given the jasmine suite and saw a few familiar faces (nurses). It felt like going back to school after a vacation or something. The patient next to me and his wife chatted with me when there were no nurses in the room. He was quite chatty. His wife is kinda "eng kee" (read: modern-looking), wearing bright-coloured clothes (really bright) and her hair dyed reddish. We were the last two patients to leave the room.


After I told my friends about the "no surgery" decision, most were happy. I believe they don't want to see me in post-surgery pain. Did I mention that the PET scan showed that I have "brown fats"? "Brown fats" have high metabolism rate and that's one reason why I don't put on weight. I was O.O!! First time I heard of such a thing.

(Errr, i will continue tomorrow. Go watch tv. Heehee)
(continued on Thursday)

When I was given the surgery option, I was reluctant to consider it. Firstly, I am averse to going through the trauma. Then the down-time is something I don't like. I will miss my BSF classes, something which will also affect musketeer sheep. And if I miss the class on the life of Moses this year, the next one will be seven years later.


So, where do I go from here? It's most likely going to be chemotherapy to control the disease. (I don't have many options anyway.) Meanwhile, the wait is for approval of some newer drugs which I can try later. A new oncologist has been assigned to take over from Dr Chia. She is going to take some time familiarising herself with my case. Apparently my case file is quite thick and I have had so many regimes. *laughs*


The short respite during the CNY gave me a much needed rest. I was having mood swings since October and had been feeling rather low since then. I reckoned it was triggered by the spike in readings that time. Then learning of the loss of Shandy Sim, and the worsening condition of Shin. Another possibility of the swings was the accumulation of drugs in the body, before it could even rest enough for the next cycle. I had several nights and episodes of terrible headache and stomach-related pain during these few months. I thought my time on earth was up and God was calling me home. I remembered praying for the pain to be bearable and for good rest.


One of the reasons I asked for a change back to gemox regime was the side effects I was having. One side effect of gemzar is constipation, which no matter how much fruits I eat, still persists. Cisplatin gave me bladder problems. Plus, all the nausea and loss of appetite, it was amazing how I even looked forward to my twice-a-week outing. I told "Shuai Ge" life/happiness could be simple. As long as I can eat (even though I lost my taste buds) and sleep well, and can pee and poo (pardon the language) with ease, I'm one happy person. He concurred.


It was not surprising that I had no CNY mood this year. However, it was still celebrated. I hope the mood swings are minimal in the days to come, or at least manageable. Otherwise, I'm going to be a hermit crab in the year of the Ox.

Updates

Updates

[24 Jan 2009, 02:35:32 PM]

I'm sorry for the lack of updates. I have been out of action most of the time, mainly due to fatigue, headache and nauseating. I still want to blog down what I went through so that the records would be of some benefit to people who are going through similar situation as me.


Anyway, I went to collect the PET scan results on the same day I went to see the colorectal surgical oncologist. From the scan, there was a new lesion which previously didn't show up on the CT scan. To cut the long story short, I would not be going for any surgery at this juncture and would continue with chemotherapy. Saw Dr Chia on Tuesday, the last before he leaves for the States. The good news was that my cancer marker was stable at 62. I asked to change back to oxaliplation (instead of cisplatin) as I had bad side effects which made me miserable. Before I left the clinic, I said to him, "Dr Chia, I didn't get you anything, except this thank-you card." (It was a simple card from Precious Moments.)


He was slightly taken aback, and gave me a hug. He almost made me tear at that moment. I am grateful and thankful for doctors like him.


I was updating Liz and Ser on my progress during breakfast. I asked if there was anything I could leave them as remembrance. Liz was sobbing and Ser's eyes went teary red. I was fighting very hard to hold back my tears. I had to put it in a lighter way so that we could continue our morning routine.


I have decided to start writing some "farewell" and thank-you notes to my very big group of supporters and of course my loved ones (provided I could still think coherently and write properly). I think my body is showing signs of fatigue from the prolonged chemo treatments. I might look "normal" but the energy level was only at best 40%. There are good days and bad days and really down times. It was unpredictable.


As always, I like to inject some humour in my talk about death. I reminded Shuai Ge not to put my best and most expensive jewelry when I die. "Don't later burn already all turn into ashes. Pass them down hor." I have decided to get a niche near to where we are staying. Shuai Ge said, "Oh good. Can go and talk to you everyday!"



Dates: Cycle 5
treatments on 2 and 9 Feb.

cycle 4b, day5

cycle 4b, day 5

[6 Jan 2009, 03:46:18 PM]

Went for cycle 4b last Friday.

Did PET scan yesterday.

Still on low energy level. So sorry you have to wait a little longer before I could put up a more detailed update.