Topic: Mixed news...

Well ,Tom had his 3 month MRI and bloodwork last week. The MRI continues to look the same, no visible change but his bili and liver enzymes are creeping up so he goes for an ERCP tomorrow to see what's going on. They most likely will have to reinsert the stent but hopefully it's because of scar tissue problems and not tumor growth. He's been having chilling spells once in a awhile which is probably due to the higher bilirubin. Other than that he seems good. He gets tired a lot but who doesn't? He's 9 years older than me and I think he does better even with dealing with his health issues. He's very lucky because he's never had any pain. I'm the one hobbling around with bad knees! Take care everyone!  Mary

2 (edited by JeffG Sun, 28 Sep 2008 19:32:49)

Re: Mixed news...

H i Mary,  I don't have much to say today ,except I hope and pray the same as you.  I'm so happy he is without the pain issues, as that wears you out so much.  I've got another week of radiation on the tumor pressing in on my esophagus.  Tomorrow they are suppose to look at why I'm having so much pain to the lower back spinal area.  I sleep with a little tiny pillow under my right side of lumbar area.  Only way I can sleep now.  Well, we'll see what another day brings.  P.S.  Take it easy with your kness.  Is there anything you can have done with your kness Mary?  Zometa treatments maybe or steroid injection? Just thinking out loud.  I had injections in my shoulder joints and it helped tremendously.  You can have  them every three months if needed.  Usually one time last me for almost 2 years. (hydrocortizone) I think it is.

Bless Ya Both,
Jeff

Take it to the Limit,One More Time! (Eagles)

3 (edited by marions Mon, 29 Sep 2008 09:37:55)

Re: Mixed news...

Mary...looking forward to hearing from you after tomorrow's visit.  Those chilling spells can be quite annoying.  The best remedy I had found was throwing warm blankets on until the shaking stopped.  Hopefully, once the stents are replaced these darn symptons will disappear and Tom's energy will be back to normal.  Then you just might be able to stay off your knees a bit.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mixed news...

Mary,
   We will be pulling that the reason is scar tissue. Try to stay off the knees. I am thinking about both of you as he has that ERCP

Joyce C.

Re: Mixed news...

Thanks friends,
   We just got back from Columbus and the Doc is sure it's radiation stricture that is the problem. He inserted a balloon to try and open the duct up and then put in a stent. In 8 weeks he'll go back in and try the balloon again and remove the stent if he thinks it will stay opened. So good news- like our radiologist said two years ago she'd much rather deal with scar tissue than cancer!! Best wishes everyone! I'm heading to bed, it's been a long day!!  Mary

Re: Mixed news...

Mary...what wonderfull news...(who would have ever suspected for scar tissue to be causing such elated feelings.) Hoping for Tom to be feeling better already and your knees are giving you some reprieve.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mixed news...

Mary, you must have had such a stressful day.  I'm so glad that it was only scar tissue.  I never heard of this balloon thing.  They did that with and ERCP? 
Put ice on those knees.  I'm recoverving from knee surgery in April so I understan knee pain.  I've had ice on mine today too.

Best wishes

Re: Mixed news...

Yes it gets to be a long day going through all of this as all of you know. We have been really blessed because we've had a long reprieve the last year or so. As for the balloon ,that was interesting. They do it with ERCP. a little camera is attached too and they just inflate the balloon when they get to the narrowed area. He was afraid to blow it up too far because it could cause damage to the duct, leakage etc so he just put the stent in to keep it opened and then will try again. We keep wondering why they can't do duct replacements with pig ducts, They do it with hearts it would be great if they could do it with  the liver. I guess there is some research going on. As far as the knees, I need to lose some weight and that will help but it's hard to walk or bike etc when they hurt so much. This damp Ohio weather doesn't help!! We had a friend that came back to Ohio last May from Arizona and said she had forgotten she had arthritis until she got back here! Take care everyone. My thoughts and prayers are with all of you. I really feel blessed that we have been so fortunate. You always know things could change quickly so we have to enjoy everyday!!! Take care , Mary

Re: Mixed news...

Mary,
I am so pleased for you both!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank goodness. Hugs for you and yours.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Mixed news...

We had been planning a few days away after Tom had his stent put back in on Mon so we headed out at 5 am Weds for upstate NY and Vermont. I was really worried that Tom did not look well- his eyes were more yellow than before they put the stent in etc but I didn't want to argue with him about going. He was really excited to get away! (We don't go much!!)He kept itching more and more all day and we finally stopped and got to bed about 9. By 11:30 he had gotten up to go to the BR and finally admitted that he was getting alot worse so we checked out at midnight and drove all the way back home! We got in at 9 AM and I called the Docs in Columbus and I ended up taking him down there (2 1/2 hours) to be admitted. They had to go in and put a new stent in, the previous one had slipped out of place and was blocking off the duct completely.He came home yesterday and is doing alright now. It just shows how insidious this disease is because it may not even be the cancer itself that does you in - it's all the complications that arise because of it. I know if he has to keep having stents it will shorten his life expectancy regardless of whether the cancer returns or not. I think I will send his records to some different places to see if they can do something about the strictures in his duct. I'm thinking Dr. Jenkins and maybe Duke-any other suggestions? I don't even know what they could do but his Doc in Columbus is talking about trying something but I'd like to get a second or third opinion. Thanks, Mary

Re: Mixed news...

Mary...so glad for the stent to finally be working.   Even though Tom is doing well I applaud your idea of obtaining another opinion certainly, from someone who has experience with this cancer especially, since it it is not very common and in addition too, it likes to differ from person to person.  You might very well find out that Tom is in good hands but, then at least your mind will be at ease.  Will you have another chance for a get-away, soon?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mixed news...

Mary ,I am so glad you got back home and down to columbus and got that stent replaced.  Darn it Tom, your just like me, stubborn as a mule.  Mary ,I would think something could be done.  I was thinking they should be able to come up with something, this day and age.  This may sound stupid ,but can't they do actual bile duct transplants or am I missing something here.
God Bless, 
Jeff G.
P.S. Are we planning another trip ?

Take it to the Limit,One More Time! (Eagles)

Re: Mixed news...

Hi Jeff,
I read or heard something two years ago about using pig ducts just like they do with the heart. I do think it's being studied but not used yet. We may go for a day or two. He's still not totaly out of the woods. He was doing great before they "messed" with him. They want to do more but I think they should just leave him alone and let him heal. I swear the more you you do with this disease the worse things get. He had a different Dr do the stents this time and we just want the old Dr and the old routine of going in and changing them when needed. That worked for 2 years so it seems smart to continue! Hope things are well with you! Take care of yourself and enjoy the great fall weather. I'm not ready for winter yet!!  Mary