mlepp0416
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Oh…I also forgot that his CA19-9 tumor markers went from 92 in August up to 184 on 09/22/2010. So there is something to be said for the CA19-9 tumor markers…
devastateddaughter: My husband Tom who also has CC just experienced the same thing, his abdomen was swollen, his thighs and his feet/ankles. He was inpatient when it started happening. He gained about 25 pounds like…overnight! First doc put him on a water pill and he peed off 11 pounds but regained it within a day or so. Then 2nd doc did an ultrasound to see if there was fluid in the abdomen (of course there was) and then did a paraenthesis (drained the fluid off his abdomen).
You may want to get your mom to the doctor to check for ASCITES as per my husband it was quite painful. Per the internet the paraenthesis can also be painful, but Tom reported that although the draining was uncomfortable (because the intestines were floating in the fluid and when the fluid is drained, the intestines return to their normal position it causes cramping) but not painful. The tiny puncture wound that they make to drain the fluid was sore afterward, but Tom was so relieved that the fluid was gone, he stated it was a small price to pay!
You need to get your mom to a doctor to check on whether or not is is Acites and to see if they will do a paraenthesis to drain the fluid off.
It took only one day for Tom’s thighs and feet to go back to ‘normal’ after his paraenthesis.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Friday ended with Tom being back at the doc’s office and they FINALLY decided to check out the fluid on his abdomen! He had a parentesis done Friday at about 5pm…..he feels much better however his pcp said that his tumor markers are elevating again. Good news/bad news, how much more can he take?
Doc wanted him to go inpatient for the weekend to which Tom said “No way, I was just there for 5 days and this was NOT addressed, so if you can’t do it outpatient then it’s not getting done”. Doc got it all set up and the procedure was done and only took about 15 minutes. Gotta know when to stick to your ground!
Go with God and KEEP KICKIN’ THAT cancer
Margaret
My hubby is a ‘peeing’ machine! He started on the diuretic this morning and has lost 11 pounds so far just by peeing. I did have to laugh when he told me he was down 11 pounds…that’s a LOT of pee!
Per his Onc that we went to see yesterday, he was septic when he entered the hospital and they pumped a lot of fluid into him. Because he was low on protein, his blood vessels then start seeping fluid and that fluid then collects in the belly cavity. She stated that an infection like this can and will kill him so he has to listen to me when I tell him that it’s time to go to the ER (Yipee) I’m so relieved that this is not liver failure! I’ll take the low protein and iv fluids any day over liver failure.
The game plan now is for Tom to come in every two weeks so they can culture the bile in the bag and the minute it starts growing something they will install a PICC line so I can administer the IV antibotics at home (No more inpatient hospital stays for him)!
Hopefully once Tom is done peeing (LOL) his weight will return to normal!
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Marion: They did blood culture’s when he was admitted to the hospital and those were fine, they also did a culture on the bile from his tube and ‘something’ started ‘growing’ (enteralcoccus) and then treated him w/massive doses of antibotics…
Marion: No diuretics prescribed as of yet, but I did put his compression stockings on this morning and that has helped the swelling of the feet a bit. Also got him in the recliner with the feet elevated.
MVB70: I’m not certain who will be draining the fluid, but I suspect it will be interventional radiology. Tom’s tumor markers have been on a downward trend and his alk phosphate numbers are down to 400 which are all good signs. So sorry to hear about your dad. At this point, Tom is not too uncomfortable, what with all that he has been through in the past 2 1/2 years, I know there were others things that we went through that were worse than this. I know that Ascites is not a good sign and I’m certain that his onc will be on top of this now that she is aware of it.
Go with God and KEEP KICKIN’ THAT Cancer.
Magaret
Tom goes in tomorrow morning to get the fluid drained off his belly. Today his thighs and his feet are huge….he has gained over 15 pounds and it’s all fluid. I know we want him to gain weight but not like this…..I find it hard to believe that while he was inpatient for 4 1/2 days they did not even address the ascites issue at all even though we repeatedly questioned it
I made him call is onc this am with our concerns….his feet are so big that he cannot even get shoes on!
Calgon take me away!
Margaret
Want a little bit of a chuckle? Before they would release Tom today, they were setting up home health care to have someone come in daily and flush the drain tube and change the bandage….now is a bit late to be concerned about that don’t ya think? Who do they think has been taking care of it for the past 10 months? Maybe a little elf or a munchkin?
His doc did not come in to see him this am cause they (the hospital?) was waiting on home health (so the nurses said) and when his doc came in at 12:30 his first words were “Please do not throw anything at me”! His doc does not know who ordered home health care because he did not.
Now they want him to come in every 2 weeks to get a sample of the bile and will watch for infection. If it comes back they will put in a PIC line so that he can get IV Antibotic’s at home rather than to have to be in the hospital for 5 days. FINALLY they are using their heads! And they are also going to get him on a schedule for tube exchanges, something like every 4 – 5 weeks and the tube exchanges will be automatic. This is something I suggested and finally they are listening to me! Go figure eh?
Well, on that note, I will just say once again, “THANK YOU ALL for all your support and prayers”. I can’t tell you how much this forum has helped me out in the past 10 months.
Go with God and KEEP KICKIN’ THAT cancer
Margaret and Tom
Tom will be released from the hospital today! He’s 110 percent better! And get this, his alk phosphate level is down to 500! YES, 500, it has not been that low in over 2 years! The ‘on call’ doc was so concerned about his alk phosphate level on Saturday and I asked her it it was 900 and she said ‘yes’ so I told her that 900 was actually GREAT for him since it had been over 1500. Then the blood work on Sunday was 500! So, don’t know why it went down but that is awesome news! His onc is going to be amazed. For whatever reason, Tom appears to be great at dodging those bullets!
He’s crashed no less than 5 times during his 4 days in the hospital…can’t figure out why they won’t listen to the patient and his main caregiver about how much insulin he really needs! After the 4th time of him crashing then they finally started listening to me. Before I left last night, my final words were “Please do NOT give him insulin tonight!”
He had a tube exchange yesterday at 5:30 pm because Dr. Dempsey was going to be gone today and that went well however Tom was not a happy camper at having to stay overnight, all he wants to do is come home and I can’t say that I blame him, however, to be on the safe side, they wanted him to have a few more rounds of the antibotic and I understand why they wanted him to stay.
And it’s amazing what 7 1/2 hours of sleep can do to renew this caregiver. (I stayed at the hospital with him and sleeping on a cot just didn’t cut it for me and not having my bipap with me didn’t help either)
Go with God and KEEP KICKIN’ THAT cancer.
Cyber Hugs and Thanks for your prayers!
MargaretNeed some prayers gang….Tom now has Ascites….fluid building up in the abdomen. He looks like he is 6 months pregnant! This came on very quickly and they are monitoring him closely…but I’m heading back to the hospital to be with him….going to be a long night.
He may need a paracentesis (draining of the fluid) and hopefully he will not need an abdominal external drain but apparently that would be kinder and less painful than having a paracentesis on a regular basis.
On a more positive note, his white blood count is now down to 14,000 and they have identified the bacteria (which is in the bile) and started him on another antibotic to kill the bacteria. Some strong strain of ‘cillin’….
Go with God and let’s KEEP KICKIN’ THAT cancer.
Hugs!
MargaretAll:
At noon today I insisted that Tom go to the ER. After 4 hours in the ER, they admitted him. His white blood count was 22,000 so he does have an infection, somewhere….They are doing cultures of his urine, blood and bile from his tube. If it is an infection in the liver, they will be calling in the infectious disease team. They did two Bolus iv’s in the ER and now have him on Flagyl and Cipro antibotics. I would image that he will be in the hospital for the next 2 or 3 days, but he is in the best place for now.
Thanks for your continued support.
Love and cyber hugs!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret and Tom
Thanks Gavin and Marion….I’ll be calling his doc today to get him in there to be seen. He has been jaundiced for the past three weeks (because his bile drain was blocked) His bili level was 11.1 and I think his color is about the same, his belly seems maybe more yellow, but his eyes are less yellow if that makes any sense.
Thank you for your continued support!
MargaretNot certain what is going on with Tom these past two days. He is getting very tired and isvery unsteady on his feet. His blood sugars are fine, no temp, the bile bag is still outputting the same amount of bile. Wondering if the vacation was the last big hurrah?
He lost control of his bladder at 3 am and was so weak he could not get himself cleaned up, so there I was at 3 am helping him and getting the bed stripped and cleaned. (gonna be a long day at work tomorrow cause now I’m up and can’t go back to sleep) Now he said that maybe it’s time to bring in Hospice. Does one go downhill so quickly with CC?
Of course, I do not know much about Hospice, so I’m relying on all my friends on this forum to help me out here. Do I call his oncologist or his Primary Care Doctor regarding this? I imagine that he has to have a doctors order for hospice? How does one know when it’s time? Is this just another twist in the road?
So many fears, so many questions, so little time, how does one prepare for this?
I want so badly for this to all be a dream and I want to wake up now.
Margaret
Seabee and Debbie:
Our thoughts and prayers are with you and your family. May the Lord watch over all of you.
Go with God.
Margaret and Tom
