new regime, the ninth

This entry was taken from my old blogsite.

new regime, day 13

[2 Jun 2009, 01:38:14 PM]

I started on the new regime with the new single drug, Ixempra. As Dr Wong said, two of the side effects were body ache and numbness in fingers and feet. After 2 months of oral regime, I had to return to intravenous treatment. It was a good thing that nurse KOH aka teddy bear did the plug for me. However, the anti-allergy drug given totally knocked me out, both during and after drip. It left me feeling groggy till the following day.


The body ache started to kick in on the second day and intensified on the third day. The body ache was like being boxed by someone and left me feeling painful (especially the joints) all over. I couldn't sit up, lie down or even walk, every posture was incredibly uncomfortable. Very frustrating. I had to take the strong painkiller prescribed by Dr Wong. It only provided slight relief, even though the medicine could last 12 hours. Then I had this itch/rash on the upper half of my body. I scratched myself raw on the chest and on the shoulders. The other side effect I had was constipation. I was feeling bloated and the intestines were sluggish. I rang the walk-in clinic for an appointment since I was going to SGH to see my liver specialist that Tuesday. Ser was really thoughtful and gave me a lift to the clinic after our usual breakfast and marketing.


At the clinic I was told that I might have to wait for at least two hours. I let the nurse know of my other appointment at SGH. As I was pressing for time, another doctor just took a look at me outside the clinic and prescribed medications. While waiting at the cashier (no consultation fees payable since I wasn't examined in the clinic), this couple kept smiling and waving at me. Turned out that the lady patient recognised me from the cancer programme. O.O!


It was good to see my liver specialist again. She also caught me on the repeat showing of the programme. She asked, "Oh, you didn't use your Chinese name?" I smiled and said, "No lah, I asked them to use my Christian name." My previous liver specialist is back in Singapore, but I decided to stick to Dr Ng. The consultation card had several names of the liver specialists I had seen after the first one left for private practice. I felt very comfortable with Dr Ng and she really showed care for her patients. She saw my weight loss and asked if I needed to see a nutritionist. She encouraged and reminded me to eat well since I am still on treatment.


By the way, Dr Wong too had left NCC for private practice. In my humble opinion, I felt that NCC has been losing good staff over the years. The queue for Dr Wong's clinic was incredibly long. There was once we waited for two and a half hours. There was a patient then who said Dr Wong is a "big shot" doctor and yet refused to see another doctor when the nurse suggested. The patient claimed that she saw another doctor and wasn't happy/satisfied. She and her spouse certainly showed their impatience and dissatisfaction for the long wait.


I'm always grateful and thankful to the doctors who have/had taken care of me. Sometime ago, my ex-classmate called to say she saw me on tv and shared that she has been diagnosed with br.east cancer. She went to NCC initially but changed to another hospital after she found the doctor not quite whom she wanted. That was another reminder that my doctors "rock"! My Chinese physician is just as wonderful. Blessed me!


It's been a month since I last posted. I'm still on this battle against cancer. Sometimes it feels easier to give up, especially when the side effects are in full swing and the fighting seems futile. There are more "down" times but within those times, there exists "up" moments, albeit short ones. These short moments sometimes provide me impetus to continue. I very much prefer to be left alone although I must say that my friends are always there for me. Don't worry, if I ever need anything from my friends, I won't hesitate to ask. Promise!


Oh, the hair has started to drop since Sunday and I'm going for the shave this evening. I have a new wig to play with, courtesy of Lyn. She also bought me the last one five years ago. I'm just wondering if I'm brave enough to just wear bandanas. Yati, the lab technician, suggested wearing a hat with jeans. She said I'm petite and should look quite "stylo" in that. Haha!

regime#8, stop

good, bad and bald?

[30 Apr 2009, 03:23:42 PM]

Good: blood count all ok, despite not eating much
Bad: (a) marker shot up to 208, suggesting current regime not working for me
(b) blood pressure measured at the clinic was at all-time high of 171/117
(c) protein found in urine
Bald: going to try ixempra, which means I'm going bald again

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.