Do you always have pain with CC?
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One day at a time and enjoy every moment, even the bad days, as these make the good ones so much better.
Best wishes to you and Karl x
“Crazymaking”, what a perfect word to discribe this journey!! Wishing you and your husband the very best! ~Jenny
Andie, He was on daily antibiotics but they stopped working so now he has cipro to take when he starts getting the fevers and then he goes to the hospital for IV antibiotics. Everytime he gets an infection it turns out to be a different strain. It’s so weird, I don’t know what to think anymore. My mind was all prepared for being a widow soon and now it looks really good for Karl for awhile so I guess the only thing to do is take it one day at a time. We went down to So. CA for the winter and I didn’t expect to be bring him home the way he was when we got here, but now…we’re leaving to go back to WA on May 1. Both of us. Go figure. This disease is crazymaking!!!
That’s great news on the scan. Fingers crossed the infections start behaving too!
Is he on any antibiotics? My Dad took Ciprofloxin (sp) daily and never had any infections. They also mentioned rotating antibiotics so that the bosy didn’t get used to the antibiotics if he started to get any infections, but luckily this didn’t happen.Best wishes
Andrea
Thanks everyone for sharing. We got new cat scan results today and nothing is changing. The doc says he also has a slow growing tumor like some of you mentioned. He is not having chemo as he gets very frequent infections.
It I don’t take my pain meds, I have pain at about a six. So I’m very diligent about taking the pills. I have two large tumors in my liver and they are pressing against the liver wall, hence the pain. Occasionally the tumor in my lower spine acts up as well and radiates pain around to the front of my abdomen. I don’t think I’ve had any reaction to my enlarged lymph nodes.
I have intrahepatic CC with a 10.5cm tumor in the liver and two enlarged lymph nodes in the abdomen. I had absolutely no pain until I started having hip pain. It was found that 3/4 of my hip was replaced by tumor, a pin and plate were put in to stabilized the hip and then radiation. I am currently going on my 6th day with 4 to go and already my hip pain has decreased to a very bearable amount. I’m told I have a slow growing CC. My best wishes on the journey…..
Hi Minnie,
My dad didn’t have a lot of pain, but he had some when he was at home. After his PDT, he started off on paracetamol 3 times a day then that was upped to 4 times a day. Then he moved on to Solpadols, 3 times a day at first then eventually that was also incrteased to 4 times a day. Occasionally he would get twinges of pain in his back and abdomen, and also around the area where he had the metal stent. And also he used to get a very sharp shooting pain that would pass just as quickly as it would come on, but the docs did not know what caused that pain.
My best wishes to you and Karl,
Gavin
Minnie, I had no pain right up to when I had surgery (resection) and none since. My understanding is a lot has to do with tumor size and location. Some instances of CC are very slow growing, some quite fast. Not sure why in either case.
Good luck with Karl’s treatment.
Minnie:
I am newly diagnosed with cc. They found a 4cm mass in Feb. because I had a gall bladder attack. Since then my gall bladder has collapsed and the mass is now over 6cm. The only pain I have is a bothersome back ache and an “uncomfortable” feeling in my abdomen. I start treatment next week with chemo. No operation on the tumor is planned right now because of the placement of the tumor. And I guess mine is pretty fast growing. My surgeon says I’ve probably had it about 9 months.
I’m sending prayers and good wishes Karl’s way.
KrisHi Minnie,
Has Karl been offered chemo or any other treatment?. I know Dad was hoping to get chemo but his bilirubin was never at a safe level. From the September he had an external drain as well as his external stents. He never had any pain, and even when he passed away he was painfree and very peaceful.
Sending best wishes your way
Andrea x
Thanks Andie, Karl’s is exactly the same location as your Dad’s was. I don’t think it has gone anywhere else but he has enlarged lymph nodes by the tumor about the size of a quarter we are told. not sure what that means exactly.
We were told Dads was slow growing, how long the tumour had been there we will never know. In the end it was where it was located instead of the size that caused Dads problem, and it was the jaundice that caused Dad to pass, perhaps that is why he was pain free. Despite fitting 3 stents they couldn’t get a clear path for the bile to flow due to tumour location, Dads was extrahepatic CC, right in the middle of the Y, hence causing the stent difficulty. But we have families on here with the same tumour location and they are doing well. Keep strong, enjoy each day and remember no one has an expiry date stamped on them, xx
I have pain at least once a day. The two big tumors in my liver are pressing against it. Yeah, it hurts. Sometimes the tumor in my spine starts to radiate pain from the back to the front of my abdomen. That;s very uncomfortable. I got some new pain meds from the onc today so I’m hoping they will help.
Minnie, I hate to be so iffy but yes AND no again. Depends on where the CC is and how much has Met and so many things. And that is the story of CC. I always say, about the only thing we know for sure about CC is that we know not enough. So, we live each day to the fullest, making memories and being with our loved ones. It is cherished time and precious memories!
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