So How?

Got a call from the clinic to see Dr Daniel yesterday. I was told that the ALK mutation tests turned out negative which means that I will not be able to take the targetted drug XALKORI.

So chemo remains the only option but this time on a different drug called TAXOTERE. Side effects will be severe, such as hair loss, numbness of fingers, fatigue ...

Question is when to recommence my chemo. Doc says it's ok to take a chemo break till after CNY.  So we agreed to start again on 19 Feb. Have to take a CT scan as well.

So God help me.

Day 168

Supposed to have my 9th chemo session but the cancer cell has grown in size and re-appeared in the x-ray. Cancer marker increased from 34 to 47 U/mL.

@$&#%^*!?! Bloody hell!

Doc says there is no point in continuing with the ALIMTA infusion as the cancer is now able to resist the drug. Have to try another drug and to do that, need to undergo a further test called ALK Mutation. This drug is called XALKORI which targets the cancer cells and destroys them.
It is in tablet form so no infusion required.

Day 147 8th chemo

The cancer marker went up to 34 U/mL (normal range 0 to 35) although the x-ray didn't show anything visible. Anyway, went ahead with my chemo.

Day 126 X-Rays

Yellow = Tumor (which is now barely visible)
Blue = Fluid (now completely disappeared)

Day 126 7th chemo

No significant change in the size of the tumor noted. I guess that will remain for a some time until the good Lord decides otherwise. Poof! Vanish just like that - now how wonderful would that be!

Blood test showed that white blood cell count doubled. Cancer marker remains the same at 19U/mL

This time, the chemo lasted only 10 mins cos the drug used was only Alimta (the other drug Cisplatin was dropped). Also had a booster jab of Vitamin B. Together with the steroid pill taken earlier, I actually felt as strong as a mule since.

Will update this on a less frequent basis from now on.... Cheers!

Guolin Qigong

There was a celebration that was showed on Chinese television in the eighties. To an outsider it looked just like any other Chinese wedding.  But this gathering was quite unique.  Every person present, including the bride, the groom and their celebrant, the page-boy and every single wedding guest had recovered from cancer through the practice of Walking Qigong. The page-boy survived leukemia, the bride breast cancer and the groom lung cancer.  Their love affair, which took its first step in a Walking Qigong therapy group, walked all the way to the altar.

(Source: http://www.qigongchinesehealth.com/walking_qigong).

The above qigong was founded in China by one Mdm Guo Lin who was cancer stricken. Refusing to concede defeat, she researched and devised a way to deal with the cancer which she called the New Qigong. Some called it Walking Qigong and Anti-Cancer Qigong. Now popularly known as Guolin Qigong, it has millions of followers all over the world.

I have heard and read about this powerful qigong therapy and will be signing up for lessons soon. No harm for a 4th stage cancer patient like me to try in addition to the Baduanjin Qigong which I am practicing now. I know will benefit from this.

Cheers.

Day 105 x-rays

Yellow =Tumor; Blue = Fluid

Day 105 6th Chemo

Update:  This is the 15th week. Not much changes this time round. BP is still high at 145/80 (+ - 5%). Must monitor for a while to make sure it doesn't go up further.

Good news:  Tumor size remains unchanged but cancer marker further reduced from 50 to 19 U/ml? Just have to remain hopeful that it will not grow, only shrink. This is supposedly the final chemo session and the critical period is over. But to control the cancer, I will have to undergo "maintenance" for so long as the tumor is still there. That means chemo for life unless (correction : until) a miracle happens... And when that happens, the doc said I will be interviewed by The Star!

"Maintenance" in my case, means still undergoing chemo but this time with lower dosage and only one drug will be used i.e. Alimta. The other drug Cisplatin will be dropped.

Not so good news:  Cost-wise, it's going to set me back by RM10k per chemo (once every 3 week). That excludes consultation and other fees that private hospitals love to charge. Sigh.... How to retire like that!? Must consider other options. 

God throws me challenges every once a while. This is not going to be any different. I will not buckle.

Day 84 X-Rays

X-rays of my lungs at various stages:
Yellow = tumor
Blue = fluid (now completely disappeared)

The bottom pix is that of a set of healthy lungs - just for comparison purposes.

Day 84 5th chemo

For the past 3 weeks, I have been eating well and exercising regularly. Bowel movement was frequent, almost daily. No more fever or cough. Joint pains reduced. Shortness of breath minimal.

This is the 12th week. My blood test report shows that the cancer marker reduced from 120 to 50 U/mL The normal range is 0 to 35 U/mL. I am reaching there...

The doc said that I am one of the few patients who have responded so well to chemo (wonder if he says that to most of his patients!?). He is very positive about the progress.

Tumor size has slightly reduced. No measurement was noted in the radiology report but the doctor estimated it to be 3.5cm x 2.6cm (previously 6.2cm x 3.6cm).

I am happy with my weight gain. It was 58 kg on my 1st visit to the clinic, then 55 kg, 56 kg, 57 kg on each subsequent visits. Now at 61 kg. Before cancer crept in, I was at 68kg. But I don't think I want to reach there. 65 kg is my target.

The dietician came over smiling and extending her 4 fingers in mid-air signifying a 4 kg gain (in 3 weeks). She said "no need to see me again since you are eating well and gaining weight"!

Alarming to note that my BP has been steadily climbing for the past weeks. I monitor my BP daily which registers about 120-80 or thereabouts. But lately it is hovering at about 150-90. This morning it was 166-89. Doc says to continue monitoring for the next 3 weeks.

My daughters still don't know about my illness and I don't intend to worry them lest it may affect their studies. Will do so much later, I guess, at an appropriate time

I am now undergoing chemo while blogging this post:

Would love do it with Guinness. But green tea will do for now. Cheers!

Day 63 4th chemo

Today's chemo is gonna take about 4 hours. Which gives me ample time to update this blog. Had I not done my x-Ray and blood tests and urine tests one day earlier, it would have taken the whole day today given the long queue of patients.

My x-Ray report is very short. The size of tumor has further reduced from 6.8cm x 4.4cm to 6.2cm x 3.6cm. The rest of the lungs is clear (meaning fluid in the lungs has disappear).

Blood tests and urine tests reported are normal (save for some red flags which are not alarming). Cancer marker reduced from 310 to 120 U/mL.

This means I am responding well to the prescribed drugs. Actually, I was expecting a much better improvement. Especially when I feel good (unlike the last time). So initially, I was a bit disappointed.

But come to think of it, improvement has been astounding. Before chemo, the tumor was a sizeable 10.3cm x 7.8cm. Now it's 6.2cm x 3.6cm. Which means the size of the tumor has in fact reduced by about 70%!

Two pictures tell two thousand words. So here goes...

X-ray of healthy lungs:

X-rays of my lungs. Yellow = estimated size of tumor. Blue = estimated amount of fluid

The dietician saw me in the cancer ward and chatted with me. I told her that I am not quite satisfied having gained only 2 kgs for a 6 week period. Surprisingly, she said "very good already"! Her target for me was actually to prevent me from dropping below 55kg!

Btw my weight according to clinic's scale showed 57kg and and not 60 kg when I last weighed myself at home. Perhaps, it's time I buy a new scale, digital one for that matter?

Day 60 Sleep n Rest

My 4th chemo is on Thursday 26 Sep. So how am I so far?

I asked Carol the same question when we were exercising this morning. She says I look so much better.  Things are improving. Yup, I agree with her. I feel great. I feel good. And I am sure regular exercising is crucial. Hopefully, I can keep the momentum going.

Besides exercising, I also heard that reflexology brings relief. So I bought wooden reflexology clogs from Jonker in addition to the reflexology slippers that I have at home. Arghh! Painful as hell! So I am wearing the clogs only when doing light exercises or qigong. Also bought a reflexology board. My friend says kiasu a bit never mind la!

And on Thursday, I am going to tell Dr Daniel "Appetite is ok due to Megace, an appetite stimulant prescribed by you. Joint pains reduced. Coughing almost gone. Tiredness is less severe. No more rashes. Bowels movement very regular, almost daily. But I have to sleep and rest most of the time. Thank you."

Now going to bed for some rest.

BTW I am now at 57 kg. Hair still intact but more white hair (due to normal aging):

Day 57 Exercising

I have begun exercising outdoors for a week already. Carol and I will normally will reach the Tun Fatimah Stadium Serindit by 7:30 am and spend an hour + there.

Have decided on a 1-3-5 routine because on weekends there are too many people (risk of outside infection higher). Will do some slow and then brisk walking for about 30 mins followed by qigong exercises.

Even when not in Serindit, I still do the exercises at home at the balcony or even in the living hall while watching TV. Anywhere also can.

Some pictures taken while going through the Ba Duan Jin exercises this morning.

Note the last pix. Wife duduk senggit, bench senggit, tupperware also senggit...

Day 42 3rd chemo

Latest X-ray again looks promising and tumor has shrunk a great deal as compared to the last review. Although the effects of last session was worse than the first, the results are good. The fluid in the lungs has almost dried up.

The tendency to "cough and ahem" out the phlegm should soon disappear, doc says.  Constipation has gone. He is pleased. I am pleased. 

Blood tests showed that red cells have reduced, though not alarming, since the last count and haemoglobin level is on the low side. Cancer marker reduced from 360 to 310 U/mL.

Ms Dietician recommends consuming more red meat whilst continuing with white meat intake. Mr Onco is not alarmed and says it's still at normal levels. 

Weight-wise, both doctors agree that I need to eat more and put on xtra kgs. I had set out to gain at least 3kg in 3 weeks. Instead, I only managed to put on a measly 1kg over that period! Must admit I failed in this area. Now at 56kg according to doctor's scale.

Overall, feeling better as compared to recent weeks and looking forward to more promising results in coming weeks.

Edited pix (red - tumor; blue - fluid). Original pix (below)

3 sessions of chemo done. 3 more to go before deciding on next steps. As usual, your prayers much needed.

Rick 20130905

Day 26 Fatigue

YSL OTM TSY YSC (KL) LML LSL MS WMS TJX (JB) AL LCW (MLK) visited about 6.  It was after the AQEE held in Mlk.. Everybody looked good ;) chatted a bit and they left for dinner after about half an hour. I think they are enjoying crabs right now.

The effects of this 2nd chemo were worse than the first. Fever came one day earlier on Sunday. Again had to visit A&E. Was prescribed another set of antibiotics.

After that, i had no appetite at all to eat solids for the next 2 days. So it was fruits and juices and only today I managed to take in some porridge.

Qigong exercises suspended temporarily cos I didn't have the strength. Rashes didn't appear but fatigue really got into me. Very very tired what's more with the fever... 

On another note, EY Mlk will be having their annual dinner this Friday in JB. How I wish I could be there.