valwong
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Thanks everyone for the kind words. We are taking it day by day now, I really have no better plans.
I hope the day cholangiocarcinoma is history is just around the corner and there’s no more sufferings for anyone anymore.
Sincerely yours,
ValBest of luck Julie! Hope you are feeling better by the day.
And thanks all for the kind regards. Dad’s feeling ok these 2 days, we are watching the English premier league together now.
ValJulie, apologies for my late reply. I am so sorry you are feeling this way. My dad has had the same, the chill and the dry heaves. They didn’t come as side effects for the chemo but rather our doctor said it’s the cancer breaking down and multiplying inside the body. He had a few days of chills coming just before dinner and it made him very scared for a while. Nothing we did was of any help, and we could just keep him warm and wait for it to pass. His face was also red for a few hours a day (and it still occurs now) and the doctor explained it’s the liver function deteriorating. His legs were swollen too, but the swelling went away after we popped some pillows under his legs for a night. You need to have a stronger body to withstand more treatments ahead. My thoughts are with you and sincerely hope you feel better soon.
On platelet, my dad’s count was hovering around 45-90 level for a while. We were prescribed REVOLADE 25MG (Eltrombopag is the other name of it) once a day. It surely helped, but am not sure whether it’s available at where you are. The other proven formula is a soup made of peanut skin (the redish brown layer of raw peanuts) which my dad has been on for a year. Most, if not all, patients getting chemo in HongKong use it. Please let me know if you would like to know how it works, of course peanut skin has to be for sale at where you are to begin with. Try googling “peanut skin soup platelet count” you will see there plenty of discussions on it.
On another note, my dad’s not doing so well and has been hospitalized for 2 weeks now. The dr told us to be mentally prepared. Honestly I don’t think anyone can be prepared for this. It wrecks my heart to even think about it. My heart goes out to those who are battling this disease.
Reacher – we used to live in Richmond BC as well, am sorry that we had to meet in this forum.
ValHi Patzel, sorry for replying only now… Haven’t checked the board for a while… My dad has extensive bone mets diagnosed in April, and has gone through tomotherapy only. The ones near his shoulder, bottom of his spines were treated but not the ones on his ribs cos they are not major and do not hurt. I fully understand the pain as my dad first started with OxyContin and moved onto morphine as well. He’s also using the durogesic patch. I am sorry I cannot offer much on the surgical option you are presented because our ONC never offered that option to us. That sounds rather dangerous and I would definitely ask about cryoablation and other options. Our ONC said there are also options you can get from an anesthesiologist such as intervening with the nerves around the tumor (sorry for the lack of exact terms).
Oh and at one point we were also on steroid because the tumor was flaring up, which helped.
My dad’s experience after being on so much pain meds is he’s restless, constipated, and confused. But I am sure everyone her can tell you the side effects. And then it’s just more meds to treat the side effects.
I supposed you are already on zometa?
Sending you lots of love from HongKong,
ValLainy, thanks a lot for the quick feedback, I forgot to mention the ONC did give my dad Xanax, which seemed to have worked on the first day. He was able to get some sleep. I am just weary of more drugs -> more side effects. He was already suffering from insomnia, loss of appetite and constipation. Xanax (or something else in his cocktail) is giving him uncontrollable bowels his week – something that’s embarrassing but more importantly, devastating for him. I will ask about haldol so thanks again. Sometimes our struggle is that we don’t wanna act like we are undermining the ONC. Whenever I ask him something, I always put in a disclaimer saying “not meaning to question/ undermine/ doubt your professional judgements here, Sir”. Don’t get me wrong our ONC is a very nice, genial and personable guy. Maybe it’s the whole Chinese Confucius way of respecting teachers, or maybe it’s just me.
Thanks again, guys. The dr visit was inconclusive, my dad acted quite normal in front of the ONC, and according to the blood test the ONC suggested the delirium might have to do with the morphine and steroid he took. Given the pain is by and large gone now, he suggested to dial down the meds and monitor for a week. The other possibility is brain tumor, which we fear – but from observation the ONC didn’t think it’s likely. We will need MRI to confirm that.
When he returned home, he’s restless again and only manages to sleep 5hrs a day even with sleeping pills. He keeps telling us how worried he is for us, and repeats the same things over and over again. I am gonna call the ONC today just to make sure, I don’t even know who else I can seek professional advice from regarding patients’ psychology in HK.
Many thanks for the thoughts. It’s very scary to think my dad’s leaving me and I try not to let my mind wander towards that direction.
ValThanks a lot Lainy and Marion, it was Sunday and or ONC was not in town. We will go to the hospital today and do as you suggested. Dad’s not as agitated but still seems restless.
Thanks again,
ValHi Patzel, my dad has had bone mets along his spines and ribs since March this year. Besides chemo, radiation seems to be the only option to shrink/kill the tumors thus lessening the pain. He just had a few sessions of tomotherapy at the hospital. We were told that it takes time to show its effects. We also spoke to the anesthesiologist about other pain relief options, such as numbing the nerves around the tumors (cryoablation, ultrasound etc) but was told radiation is probably the best and longer term solution. My dad gets good and bad days… He’s already on morphine and oxocodine etc, but sometimes he would still have attacks of massive pain. Sorry I am not offering much help here, but would like to let you and your husband know that you are not alone. My thoughts are with you.
ValCongratulations Liz and Steve! Am so happy to hear this. I hope she is having a speedy recovery. Regarding chemo, when my dad had his resection 3yrs ago the doctor also said no chemo. In hindsight, I thought perhaps we should have done it. Back then we didn’t because his scan was all clear after the successful resection (clear margins et al). In any case, I think many here would agree that speaking to more oncologists is a good idea.
Many thanks! Dad’s appetite returned last night I think it’s because he’s relaxed. Am so glad!
Good night to you from across the ocean!
ValMany thanks for the encouraging words, Marion Lainy and Gavin. Lainy – Indeed I am a pragmatic person, and try to avoid becoming “superstitious”. (think FengShui etc) At times, I just want to believe in miracles too, as we do need a little bit of that…
thanks again and i will keep posting.
ValHi Nick, welcome and am very sorry to hear about your mom’s cc. My dad is 66 and he had a successful resection 3 years ago until cc returned in his lungs last year. 9 cycles of chemo sounds like a lot, but it’s very encouraging that she is not too affected by the side effects. My dad’s ONC stopped the gem/cis combo after perhaps 4 cycles when the tumors did not shrink per CT scans.
Am sure your ONC would have mentioned, but have you considered radiation? How about targeted therapy such as Erbitux!? Erbitux is for colorectal cancer patients whose tumors have not shown KRAS mutation. The pathologists can test that for you per your ONC’s instructions.
Sending you lots of love from HongKong,
ValHi Frippislander, my dad with the same disease has very low platelet count as well. Even before the disease it was hovering around 100 and now it’s down to 50. I think there are some chemo drugs you can use despite of that. He’s on 5-FU and Avastin now. Sending our best wishes for you from HongKong,
ValSally, we tried chemo for around 3 months, my dad had dry skin and skin rash, but did not have hair loss and other side effects. I was told that if you get the side effects it means the chemo is working. However the best option to confirm is the scans. My dad’s CA19-9 never went above 30 even before the surgeries, so blood scan was not an option and his ONC used CT Scans to confirm if the meds were working. The tumors did not grow but did not shrink either during those 3 months. That’s what prompted us to explore the option of radiation. It worked to control the growth of the tumors because it’s targeted. And there’s no side effects, at least my dad did not feel any. Our ONC told us that radiation is the only thing guaranteed (after surgery of course) to control the tumors. However the tumors have to be of certain size and there can’t be too many of them. Basically the parts of body that receive radiation would “die”, so as you imagine you can’t do it on too large an area of the lungs. After radiation, my dad was able to hike and do sports again. We even went on 2 holidays abroad. That is, until he had bone mets now.
Our experience with chemo is not that great, so I might be biased here. But you would know by now that chemo is not 100% and really affects the quality of life. The downside with radiation is it doesn’t attack the root of the problems, and there still might be more metastasis in the future. However, if cost is not a concern, I think it’s worth taking the chance and tackle the tumor as it appears.
Sending loads of love to your family from HongKong,
Val
