The pain is SO bad!

Talk about pain, pain, and MORE pain. The new drug that Husband is taking causes, as one of its side effects, BACK PAIN (reported in 16% of patients receiving Erbitux with irinotecan - which is the combination that Husband is being given). So, can you imagine that? Back pain? ON TOP OF the existing lower back pain that he is already suffering from? It is truly, truly awful to see him suffering so much. As he keeps saying, it isn't the cancer that is really "killing" him, it is the back pain. AND THERE IS NOTHING I CAN DO TO TAKE THE PAIN AWAY! :-(

The other piece of news - we did the blood tests today. The CEA has crept up marginally - it is now 260.6, up 2 points from 258.7. I hope that this is a good thing - that the Erbitux has got the cancer under control, and the next round we should see it go down significantly. THAT is what I am praying for. Otherwise I do not know how Husband is going to handle another blow like that. In fact, I don't know how I am going to handle it either. For now, I choose to look at it positively, and will keep praying that it IS positive.

Tomorrow we are off to Melaka for chemo #12. When we first started all this, the oncologist told us that the "standard" was 12 chemo cycles, but it varies. Well, it sure varies for Husband - we are at #12, and are no better than we were at #1. In fact, from CEA alone, we are in fact worse off than #1. We are still looking for the light at the end of the tunnel!!

Keep Husband in your thoughts that he is able to bear the pain of the drive to and from Melaka tomorrow, and that he beats the cancer.

Till next time, stay safe, stay HEALTHY!

One week after Chemo #11

It has definitely taken Husband longer to get over the debilitating effects of this new drug, than the previous one. Yesterday (5 days AFTER chemo #11) was the first time he started feeling even vaguely "normal" (not in the usual sense of the word, but in terms of how truly awful he has felt lately!).

Today (Thursday) was the first walk-about session we have had, and it totally exhausted him, though it definitely helped to cheer him up. As I write this, he is seated at his big Mac desktop, surfing the net, has just finished a nice chat with our good friend Kev in the UK (via Skype!!), has had his afternoon tea, and has just taken his afternoon pain killers. I wonder if he is always going to take this much time to recover - because it really is depressing for him when he is so weak!

He is still losing weight - not through lack of food(!), and now the skin on his poor nose is peeling. He is still rather weaker than he should be, but generally speaking, a lot better than he has been the last few days. Our main prayer, of course, is that the Erbitux+Camptosar combination will WORK, will get rid of the cancer, will reduce the CEA.

Next chemo session is on 30th Sept (Wed), so we go do the blood test at our GP one day before. Let's see how it goes.

Till next time, stay safe, stay HEALTHY!

Weak and shaky...

That describes how Husband is reacting to the new chemo regimen - very weak, very shaky, always exhausted. According to the write up on Erbitux, the "common" side effects are:

"Changes in fingernails or toenails; constipation; cough; diarrhea; dry mouth; dry skin; eye redness or irritation; general body discomfort; headache; indigestion; mild acne; nausea; pain, swelling, or redness at the injection site; sore throat; stomach pain or upset; tiredness; trouble sleeping; vomiting; weakness; weight loss." (As described on http://www.drugs.com/sfx/erbitux-side-effects.html).

Husband has been hit with the general body discomfort, tiredness, weakness, weight loss. He has generally had trouble sleeping, so no help there with this new chemo regimen either. So far have avoided the other side effects, and I keep praying they WON'T affect him at all.

It is truly awful to see him like this. Husband has always been such an energetic, get-up-and-go person, but it looks like his "get-up-and-go" has "got up and gone". In the end, if it works, it will have all been worth it, but, right now, while suffering through all this, neither of us can see any light at the end of the tunnel yet. I just pray that the cancer WILL be destroyed by the Erbitux/Camptosar combination, and that the CEA will start going down AND keep ON going down, down, down. I don't know what we will do if that does not happen. It is just heart-breaking to see him like this, and the worst part is there is not a damn thing I can do in all this.

Please keep praying for Husband, keep him in your thoughts, and pray that the cancer will be beaten and he will be well again.

Till next time, stay safe, stay HEALTHY.

A "downer" this week, and Chemo#11

The downer started with Husband's back pain really intensifying and causing him so much misery. He could not sit, lie, or even STAND in any comfort. And, let's face it, even if he could "stand" in comfort, that wouldn't help much over the day, would it? Most nights he moves around from room to room - our room, to the back bedroom, to the sofa, back to our room - endlessly through the night, trying to find some comfort somewhere to catch some sleep. As you can imagine, he has had even less sleep than usual.

Then, on Wed, we got hit with a MAJOR downer. We had gone to see the doctor in the morning, for her to take blood for the usual blood test. Went to pick up the test results in the evening, and had a shock when we saw the test results for the CEA (the Cancer Counter in the blood). 2 weeks ago it had been 161.3. This time it went UP by ALMOST ONE HUNDRED - to 258.7. The results hit us both SO HARD. We were upset, depressed, angry, in tears.... it was a major, major emotional downer for us. Husband had been so very good about taking his meds regularly - and the meds were at FULL dose - and yet the CEA went up instead of down.

I called the oncologist immediately to tell him, so that he could have time to think about alternatives before we got to Melaka to see him on Thursday.

So, on Thursday, left KL at 6.15am, and were at the hospital in Melaka by 8.15am. Registered, dropped the appointment card off at the clinic, then went for breakfast. Were back at the clinic by 9am, and finally got to see the doctor at around 9.30am. He did reassure us to a certain extent by explaining that the CEA can go up to the THOUSANDS and the cancer can still be treated. So, from that perspective, a CEA in the low hundreds is not AS scary (though it IS still scary generally to know you have cancer!).

Also, he has changed the chemo regimen a bit. Husband is still on Camptosar (Irinotecan), but he has been taken off Avastin, and that has been replaced with Erbitux. AND there are no more chemo pills to take on a daily basis (except for ONE pill, ONCE a day, after meals, to combat the main side effect of the new drug). And, it is still once in every 2 weeks that we have to go for the treatment. Anyway, the Erbitux iv was administered first, and that took 2.5 hours (from 10.15 to 12.45), then Husband had to take a one hour break (during which time we had lunch). We were back at the clinic before 2pm, but the 2nd iv (the Camptosar) only started at 2.30pm, and it took almost 2 hours. By the time we left the hospital to drive back to KL it was already 4.45pm. Husband was suffering a lot (not from the 2 iv's) from the pain in his back from sitting for so long, the stiffness from not moving, and also (at the end of the first iv), from gastric pains from not having had anything to eat since before 9am!!! We have to be so careful nowadays - he HAS to eat every 2.5 - 3 hours, or else the pains in his stomach from the build-up of acid and gas are really bad.

Oh, before you ask, the worst side effect of the new drug, in approximately 50% of people, is acne!! Knowing Husband, he won't get that side effect - he never seems to get the side effects that affect MOST people, he gets the obscure ones!! Though, as always, fingers are tightly crossed that he does not get ANY side effects!

The journey home took THREE FULL HOURS - the normal journey, one way, usually takes less than 2 hours, door to door. This being the fasting month, the traffic in town, from 5pm onwards to about 7.45pm is HORRENDOUS (and, Yes, it IS worse than the traffic in other months). We got to KL in the normal time, but once closer to town, the last stretch till we got nearer home was solidly jammed, and that was what took the extra time.

We are both feeling a little bit more upbeat today (Friday 18th Sept). Both hoping that as the last effects of the chemo pills (from the last round) wear off, that the pain in Husband's back will ease up and give him SOME relief, and both hoping that the Erbitux will take effect and knock the cancer way out of Husband's system! We have no plans for the rest of the weekend ahead, though we hope to go to PJ on Monday for lunch with the rest of the family as my brother/sis-in-law and kids are coming over from Melaka. Depends on how well Husband feels on that day - and how bad the pain may, or may not, be.

So, to end today's posting:
- To all our Muslim friends: Selamat Hari Raya, Ma'af Zahir Batin.
- To all our friends in Malaysia: Have a wonderful FOUR-DAY weekend
- To all our friends in Singapore: Have a wonderful THREE-DAY weekend (and we hope to be in SG sometime in early Oct, as we miss you all!)

And to all our friends EVERYWHERE: Till next time, keep Husband in your thoughts and prayers, and stay well, stay HEALTHY!

Latest updates: Much better already :-)

The gastric meds have definitely helped Husband a lot. The pain in his chest is pretty much gone, other than a few random twinges that last for only a fraction of a second. Less "burpy" too :-D.

Still not sleeping much, so went back to the doctor this morning, and she has given him two different types of very mild sleeping pills. Wants him to try them both, and whichever works better, we can get more of them. They are not for taking on a daily basis - as Husband hates taking pills and he already has so many to take that he is not exactly eager to add more on a regular basis - but to see if he can get at least one good nights sleep every few days. Fingers crossed!

No other exciting happenings to report.. life has been very peaceful. We started our walks again on Thursday and Friday, and will hopefully continue on Monday. Wednesday we go to the doctor again to get the blood tests done, and then on Thursday we are off to Melaka for chemo #11. Next update, most likely on Wednesday, once we have the blood test results... OR (if I am feeling too lazy), on Thursday, after we come back from Melaka.

Till then, keep Husband in your thoughts and prayers, and stay safe, stay HEALTHY!

Of get-togethers and gastric problems

Let's get the updates on Husband's gastric problems done first. Well, he has been taking the relevant meds every day, pain killers have been changed, and he is trying to be good about having a more regular intake of food and drink (though he is STILL NOT great when it comes to remembering to drink water!). So, have there been any improvements? Yes, there have, slow but steady. Not completely gone, but definitely far less painful than it was just 3 days ago. The concern, of course, is whether these gastric problems are going to be long-lasting or not. Let's hope NOT!

And what's this about a get-together, I can hear you ask! Well, believe it or not, Malaysian friends of mine from my days in school in the UK tracked me down via FaceBook, and we met for dinner last night :-D. It was GREAT to see Rozlin and Shereen again - the only ones missing were Marie, Shahida and Maymee. Maymee is also in KL but is outstation right now - we are hoping to meet her after the Raya break. Marie and Shahida both live in the UK with their respective families, but are (hopefully) going to be back in Malaysia for holidays in November and December, and with any luck they will be able to spend at least a few days in KL so we can all meet up again. And in case you are wondering "So, what's the big deal"... well, the last time we actually spent any time together was when we were in school in the UK - from 1974 to 1978!!!! And here we are, 30+ years later, connecting via FaceBook. Rozlin and I have met up in between, once, many years ago, just after she had her first child - but that was more than 20 years ago too :-D

Last night it was great to see Roz and Shereen again. And it was like we had never been apart - just falling straight back into the comfort zone with them again. Lot of catching up to do still, but now that we have found each other again it will be easier! Now I am looking forward to meeting the others soon.

One piece of sad news - our very dear friend (Peng) has told us that her father has got lymphoma (non-Hodgkins) at stage 3/4. Treatment has not been finalised yet as the doctors are looking into the best regimen possible for him - hopefully it should be confirmed within the next day or so. Peng, know that we are holding your Dad and your Mom, and you and your siblings, in our thoughts and prayers. It isn't going to be easy, but if there is anything you need that we can do, we are there for you.

As usual, please keep Husband in your thoughts and prayers, that he should get past the gastric problems, so we can go back to concentrating on beating the cancer.

Till next time, stay safe, stay HEALTHY!

Gastric problems.. on top of everything else!

Took Husband to the doctor today, as the pain in his chest is just getting worse and worse - to the point that he cannot get comfortable whether he is sitting, standing OR lying down! Makes it a bit hard to get any rest like that :-(.

Turns out that, starting from the time he had dengue and could not eat anything but still puked a lot, he has been having gastric reflux, and other gastric problems. That WOULD explain a lot! And, to make things worse, one of the two painkillers that he takes daily also makes gastric problems worse... sigh... sigh... and triple sigh.

So different painkillers have been prescribed for future use, and Husband has been loaded up with loads of other meds to take for the gastric. He took one round before we left the clinic, and is already feeling marginally better. Hopefully he will feel much better this evening, after he has had another 2 rounds of the meds.

Keep him in your thoughts and prayers.

Till next time, stay safe, stay HEALTHY!

Status one day after Chemo #10

The trip to Melaka and back went without any hassles. We didn't actually leave home till 7.20am, which meant it was 9.15am by the time we got to the hospital and registered, then went to get something to eat. Of course, being late meant that the queue at the oncologists clinic had already built up and it was 10.15am before we got to see the oncologist, and 10.45am before Husband was able to start the chemo. He was done by 1.30pm, after which we had lunch with my brother and sis-in-law and my niece and nephew. Good food, good company :-).

Dropped my niece and nephew back at their home on our way out of Melaka.... and were home just after 4pm.

Husband was totally exhausted and today (Saturday) he is in such a lot of pain. The first 4 - 5 days after the intravenous chemo are always the worst. The pain is more intense, and the discomfort in his stomach is much worse, and as a result of both of these issues he can't sleep. Things usually start to ease up after the 4th day, but it is difficult till then.

My parents together with my sister and her husband and two boys are coming over for dinner tomorrow night. Husband is planning on making an Irish stew (hopefully he is up to it!), and we are ordering some pizza's as the 2 boys are great pizza fans, and Sarpino's pizza at Mont'Kiara Plaza really does do good pizza :-D.

Other than all that, both Husband and I seem to have picked up a cold. I think it is from some infected person in Melaka hospital - no fever, just sneezing and the sniffles. Hopefully it will clear up fast.

That's it for now folks. Till next time, stay safe, stay HEALTHY!

Good news! For a change :-p

The last time we went to Melaka for chemo, we asked the oncologist if we could do the blood tests, etc, in KL the day before, so that we don't waste time in Melaka, sitting around the hospital for 2 hours waiting for the test results before the chemo can be done..... and he had said YES. So, as we are going for chemo tomorrow, we went to see our KL doctor this morning, to get the relevant tests done.

We just got the results around 4pm today, and, the first thing I looked for was the CEA (ie, the cancer marker), and I am MOST HAPPY to be able to say that it has gone from 198.7 all the way down to 161.3. It was such a HUGE relief to see that it is down again, after seeing it going up and up the last 3 times. PHEW!!!

So, tomorrow, we wont have to spend the whole day in Melaka. Probably leave KL at the same time as usual, but since we can go straight to the oncologist and start chemo early, we will probably be back by early afternoon.

Ah, there is also ONE MORE piece of good news (Yep, we are extra blessed today!). Husband has just got his MM2H application approved and the visa has been stamped into his passport - valid all the way to June 2018. YIPPEEEEEE, a NINE YEAR visa. And, for those who are wondering what MM2H is - it is the Malaysia My 2nd Home scheme which the Malaysian government has been running for the last few years, to encourage expats to relocate to Malaysia for their retirement. Originally Husband was not able to apply under that scheme, as foreigners married to Malaysians were NOT allowed to apply for it, but that rule changed in Feb this year. We were recommended an excellent agent, and he did all the work - putting in our application in mid-July with approval coming through in the 3rd week August. We had a few steps to be done, following approval (ie, placing relevant FD, getting medical report signed, etc), and once it was all done, we passed everything back to our agent, with the passport, on Tuesday 1st Sept (since Monday was a holiday, for Malaysia's national day), and just got the passport back today... YIPPEEE AGAIN! At least that is another weight off our minds.

OK, that's it for today. Tomorrow we are in Melaka. Till next time, stay safe, stay HEALTHY!

Sept already.. sigh...

Another National Day come and gone (31st August, for those who don't know). Ironically, the day a full-fledged Malaysia was formed was 16th Sept 1963, when Sabah and Sarawak joined. I wonder why we always celebrate 31st Aug??? This year was the quietest N-day I have ever seen. No pomp, no noise, no nothing! Which is just as well, because it looks like most Malaysians, given the awful state of politics (and its fallout) in this country, have nothing to celebrate.

OK, back on topic. We are off to Melaka again this Friday - for chemo #10. Fingers crossed and prayers going that the cancer counter will go DOWN again!! Husband has been awfully tired for the last couple of days. Yes, he is eating and drinking quite well. Sleeping? Hmmm, well, off and on, but it is hard for him to sleep undisturbed through the night. Now that the weekend is over, I have to see if he has the energy to get out of the house for a while, just to take a walk.

Will update again after chemo on Friday. Till then, stay safe, stay HEALTHY!