March 4, 2009 at 1:07 am #26783tessMember
Thanks for the update Rose & I’m glad to see that there is some action going on! You are advocating, getting more answers & making things happen! Dad is going through the same thing right now, as I’ve posted multiple times to date- with no changes… his bilirubin levels are up to over 20 per the visit today, up from 18 last week. He is terribly jaundice, even his eyes are the color of deep yellow. The docs continue to say they can’t explain it and have suggested that hopefully the biliary cath change out on March 12th will remedy the situation. Is this too long to wait, with such bili levels? He’s had rising levels for weeks & has been turning more & more jaundice for about 6 weeks. The bili cath change out is still 10 days away, but the posts here have me worried again!
You’re in our thoughts Rose!
-TessMarch 3, 2009 at 11:55 pm #26782
Rose….some progress was made and I am happy for that. Having a phsychologist on hand for patients of some illnesses is quite common. I was made aware of that when attending the American Psychosocial Oncology Society conference. Several Hospitals offer the these services. They are committed people wanting to help ease the burden of diagnoses and treatment for specific ailments. We all need and deserve all the help we can get.
I am hoping for a better night and that your pain is under control.
Best wishes coming your way,
MarionMarch 3, 2009 at 11:27 pm #26781
We made a whole bunch of phone calls today trying to get some answers. My biggest concern is whether the stent is working becuase that effects the status of an impending resection, plus is the main channel for symptom relief at this time.
We talked to the surgeon’s PA who informed us they had a surgery scheduled March 16, first I’d heard of it. Why didn’t they tell me about it?
Then the PA recommended me to a psychologist on the cancer ward. Is that standard? I feel like I;ve been handling this pretty darned well for the enormity of the situation and the suffering I am enduring. So I guess I go to see the psych in the morning and hopefully she can at least advocate for me or put in a report that suggests I’m reasonable and rational and not hysterical.
The GI specialist claims the stent is working even though the bilirubin levels are going down incremently….like 0.6 in three days.
I called my family doctor and she got me right in and spent 2 hours working on my situation, which felt so good to get some attention from someone that already knows me and doesn’t think I’m crazy or hysterical. She had bloodwork drawn and I’ve come down .2 again.
At this rate it will take 80 days to clear 8 points worth of bilirubin out of my system.
So now it’s all about waiting until Tuesday March 10 for consultation. On my appointment sheet the surgeon has me scheduled for a 5 minute appointment. Then another with (I think) a team of providers for 30 minutes. Hopefully I can get some answers there.
Meanwhile it’s pain management and keeping my attitude up.March 3, 2009 at 11:23 pm #26780jeffgMember
Rose……… If your not already at the emergency room or have had your stent problem taken care of, You definitely need to go to the hospital. I’m sure they can find another Surgeon. You can’t keep letting that bile drain inside your stomach or take to much pain meds.
Jeff G.March 3, 2009 at 9:25 pm #26779
Rose…I would also like to emphazise the need for intervention. Everyone on this board is speaking from experience. If you cannot reach a physician’s office then the next thing to do is have someone drive you to the Hospital to have you admitted. Then they will have to deal with your symptoms.March 3, 2009 at 3:53 pm #26778
Rose, if your doctor is gone for a week someone must be covering for him. I agree with Carol that you need an advocate to start moving some mountains for you. There is no way you should have to wait until March 10th. Can you go online and do some quick research for Madison and perhaps Milwaukee for some help?March 3, 2009 at 3:43 pm #26777
We found out this morning that the surgeon is away at a conference for a week.
Honestly I am not even sure who my doctor is. I think its the surgeon.
I have this feeling like I’m being posioned by the bile and maybe that’s simply not true. I was reading that our liver produces a quart of bile a day. This means my body has had to find another way to deal with gallons and gallons of this stuff. How can this be?
Thanks so much for your caring responses and to know I’m not alone in this CC hell.March 3, 2009 at 3:34 pm #26776carol58Participant
Rose, I’m sorry you’re having pain. Charlie has never had a stent, but from reading on the site and your description, that sounds almost unbearable. I know how I’ve had to fight for so much with this cancer for Charlie. I would advise insisting that the doctor see you ASAP to get this stent problem under control. Sorry to be so blunt, but just sharing from our experience, we’ve had to do that more than once, not with a stent, but with many other things. Do you have someone close that could also advocate for you and help you since you are the one actually dealing with the stent pain? Once you get the stent under control, I’m sure you’ll feel so much better. You may want to look into other doctors. We switched doctors early on and Charlie says if we hadn’t done that, he wouldn’t be alive today. Not sleeping and the pain you’re having are totally unacceptable and your doctor needs to address it today. I could write a book on itching because that’s been one of Charlie’s major problems. We started with Benedryl, all the prescription antihistamines none of which worked. We tried about 20 different creams. Gold Bond is the only one that worked and it was only temporary. We then moved on to Remeron which didn’t help, but he continues to take it because it helps a little with sleep. By the way, I went to the doctors with all of this from my own research. (A lot of doctors don’t know much about cc.) I read on this site from Sue in the UK that Rifampin was the only pill that helped her husband. Our oncologist refused to prescribe it because it might cause some liver damage and we thought well at this point, the liver is pretty damaged already, Charlie just needs some relief. I’m not talking normal itching. His was intense to the point it was taking over his life. His eyes, ears, face, scalp, everything itched and it was really lowering his quality of life. So I asked the Hospice doctor (Charlie’s at home with Hospice coming weekly) and he prescribed it. It took a few weeks, but with 2 150 mg capsules a day and 30 ml Phenobarbital at night, the itching is pretty much under control. Just my opinion and in our case, but the antihistamines and cream don’t really address this type of itching. The Phenobarbital affects the central nervous system and somehow short circuits the message of itching from the skin to the brain. But the Rifampin is the real winner with us. Rose, you need to be seen before March 10. Please keep us posted. Praying for you.
CarolMarch 3, 2009 at 1:22 pm #26775
My humble opinion is, with CC, to be ignored means it is time to switch doctors. I suggested, on this site, long ago to try the Sarna cream. It worked for Teddy but it is very strong and you can not use it too long. Have you talked to the doctor yourself or is the office staff relaying your messages to him. I would call and ask to talk to him, be firm but not gruff. If you don’t get a call back in 24 hours I would certainly look in to another ONC. In the last 3 years I had to do this once and I cannot tell you how glad I am we made the switch. Sometimes the office staff takes it upon themselves to play little gods. Perhaps the bile does not cause anything bad inside but the havoc it creates does not have to be endured. No One should have to put up with these symptoms for a month.
Good luck and unfortunately the best advocate for yourself is you!March 3, 2009 at 12:15 pm #26774tessMember
Hi Rose, I can certainly understand your frustration about having the bile inside. Dad has been extremely jaundice for about 6 weeks, with high bili levels & they simply aren’t doing anything. I too was worried about the excess of bile in his system, but per a recent correspondence (last week) with a Prof. of Medicine at UCSF, regarding biliary toxicity, it was indicated that the form of bilirubin that is accumulating in Dad’s circulation and is being excreted in the bile will predominantly be the so-called “direct” or “conjugated bilirubin”, which is not a toxic form of the pigment. The professor indicated that we should not worry about toxicity from the yellow pigment itself, as it is highly unlikely that the bile will cause any internal damage.
Even with a biliary cath that they claim is in perfect position & doing its job, Dad is the most yellow he’s ever been & they simply keep saying ‘we don’t know why’. Mom doesn’t want to be the squeaky wheel, & she hasn’t really pushed the issue too hard- insisting the docs know what they’re doing.
The waiting period is so long and hard. Did they give you a prescription for the itching? Its been suggested that SARNA cream is one of best over the counter for the itching. Dad’s itching, for whatever reason, has now subsided.
Per Dad’s experience, once the consult happens, the chemo started very shortly thereafter. But it still feels like forever between meetings.
I’m sorry that you’re in so much discomfort with the pain & itching. I know Dad had to have his pain meds changed because they weren’t working properly. It may be worth calling the office back & voicing your concerns about these conditions.
You’re in our thoughts Rose!
-TessMarch 3, 2009 at 9:41 am #26773
The doctor never called back with a treatment plan for the stent problem. I am so frustrated with not knowing what’s going to happen. I feel like I’m being poisoned by my congested liver and jaundice which has gone on for over a month now with no relief and can’t get the help I need..
They always ask if I’m getting a fever or chills as if that’s what it will take to get some action. I’d like to prevent an infection by getting this bile moving asap.
Nights are the worst. I simply cannot find a comfortable position to lay in or sit for that matter. I have back pain, side pain, stomach heartburn, and of course the horrible itching which is getting more intense by the day. Tonight it feels like I had a run-in with that old pink fiberglass insulation and I cannot stand to have anything touch my skin.
Have been taking the oxycodon to try to help me sleep, but to no avail. The nights are soooooo long.
How long is reasonable to wait for a treatment plan? They have me scheduled for March 10 for a consult but I don’t see how I can possibly wait that long with deteriorating condition.March 2, 2009 at 12:17 am #26772
rose may….these clogged stents can cause such discomfort. Hopefully, you are scheduled for the replacement asap.
MarionMarch 2, 2009 at 12:15 am #26771
Rose, Teddy had a stent with the bag. It should relieve you rather quickly. Yes, cancer re-defines ones whole life. We must have hope, so remember that cancer is a word not a sentence.March 1, 2009 at 11:17 pm #26770
The doctor called today and informed me that because the bilirubin levels have not changed that the stent probably is plugged. It looks like I will have to get another stent that drains into a bag early this week. Darn!!! I was so looking forward to havng the stent placed and experiencing some relief from all this and having a stretch of time at home being normal.
I slept all day under the influence of the oxycodon and will probably have to take another tonight so I don’t get my sleep biorhythm all out of whack. This whole ordeal is so all-consuming, it really takes over doesn’t it!March 1, 2009 at 10:02 pm #26769
Itching and pain seem to be common and both have been discussed many times before and I am so sorry for you having to deal with this also. If you have the time and inclination to do so you might want to use the
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