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!
Tuesday, September 29, 2009
Thursday, September 24, 2009
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!
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!
Sunday, September 20, 2009
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.
"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.
Friday, September 18, 2009
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!
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!
Saturday, September 12, 2009
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!
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!
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