Topic: Waiting......

My husband has cirrous, cc and also had a liver tumor, it appears that the Y-90 treatment back in July of 2012 took care of the tumor. Well at least that was the news last june. Unfortunantly , after the treatment his liver was not working as well so there was no second Y-90. He has had ascites with fluid removed several times but since taking Xifaxan/ zinc it seems to be better.
After being told that they didn't have a plan of treatment for him, just follow up ct or mri every 3 months.  So we did go for a nother opinion. I could not just sit and wait ! He was asessed at Barnes by DR Chapman, He is just the most down to earth Dr, we have ever met, we liked him right away. He said should my husband was  ok'ed  for surgery that his  other problems, portal hypertension and large hernia would also be fixed. But folks, it has to go thru Medicare to be approved. He is 67 yrs old and He is so weak and sick alot. He sleeps alot and that scares me.Monday we are going back for ct scan at Barnes, I worry that we are running out of time.
Also want to say that the first hospital was a large well respected hospital, it just has protacoll for this type of transplant and I think his age. was against us.
I did comment last summer on Daisy thread but since then I have had computer problems and also there was harvest, dr appt a few hospital stays , a cute little new granddaughter and just busy. If he would be cleared for a transplant it would be his best chance.. I know that Cathy has alot of good things to say about Barnes and Dr Chapman and I see why.
Brenda

Re: Waiting......

I forgot to say how much I look forward to reading all the posts, so much good information andlots of support. I have rambled too much here but it does feel good to be reading other peoples post and know how they are feeling, I feel so very much alone, even with family. They all help when they can.

Re: Waiting......

Hi,
Let's wait till the next scan result to see what else  the doctors can do. If  all the tumors are dead, then you may not need to worry about the CCA but only the  cirrhosis and ascites. Otherwise, systemic chemotherapy or targeted therapy or clinical trails may be appropriate  as well as doing nothing is also a choice too.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Waiting......

Dear Brenda, 1st CONGRATULATIONS on the new Grandbaby. That is the best RX in the world. It does sound more hopeful from what Dr. C says. Your husband is probably weak and tired as his body is fighting this alien invader! Lets hope that everything looks feasible to Dr. C and in the meantime try to take each day at a time. Wishing for the best!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Waiting......

THANK YOU ! Can I ask you to look at his latest labs?
  WBC 4.4 low
  RBC3.51
HGB 11.8
HCT34.3
MCHC 34.3
PLT 65
eosinophils 8
basophils 3
neutrophil count2.5
lymphocyte ct 0.9



I know not much what this all means. You have a way of putting things so that a non medical person can understand.  Thanks again and god Bless you too.
Brenda

Re: Waiting......

Aw, Brenda I can't help with this, I am not that good! Tell you a secret what I do. I bring home my LABs and Google each Test and it will tell you the normal range for that test. It takes a little time but not too bad and usually it is put in a way we can understand. Honestly girl, it's all Greek to me as well. Try it and see if it gives you what you want.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

7 (edited by PCL1029 Wed, 01 Jan 2014 11:49:56)

Re: Waiting......

Hi, Brenda,

For the health condition as your husband, the CBC panel looks relatively normal;

Due to the diarrhea may be a problem, I think your husband has a hydration problem  and  needs doctor's attention at this point.the Hct is lower than normal based on the lab;but since he has acsites ,therefore you need to ask doctor what to do with regard to this problem. .since I believe the fluids is not in the right place even there may be a lot in ascites..  ( Please remember, I am only a patient ,like your husband,I am  not a doctor; this is the time to ask the doctor whether your husband is hydrated enough and how to deal with the ascites at the same time.
WBC,RBC among others are low but not too bad;remember your husband is sick ,so we cannot expect everything is within the normal range of a healthy person. The platelets (PLT) is too low for chemotherapy (ie:<75,000/100,000).
However, the BMP you did not mention is more important(ie:AST,ALT,ALK Phosphous,albumin ,BUN/Creatinine ) for CCA.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Waiting......

Whew! Thanks Percy, my hero, I knew you would come to Brenda's rescue!
I hope you and your family are enjoying the Holiday and wishing for you a healthier 2014. Wasn't that Bear /Packer game a nail biter? WOW! Now I can't wait for this Sunday. Love to your family!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Waiting......

Hi Brenda, to help clarify labs.  The CBC you posted tells us the White cell count (which fight infection) which is boarderline low but the absoluted neutrophil count is 2.5 which are premature white cells to gorw up to mature WBC and they are adequate.  The only realy low lab is Platelets (they clot the blood) so there can be bloody noses, gums, and bruising.  You really need the BMP or CMP to detect dehydration,and ofcourse as mentioned above the liver enzymes should be done, CA19/9 Tumor Marker, and possiby Ammonia level. This level gos up with increasing liver damage and the symptoms are confusion, disorientation, sleeping more, etc. It can be corrected so it might not hurt to get a baseline. Hope that helps.  Keep asking questions as we all learn from each other, Janet

Re: Waiting......

Brenda-I am glad you got to expierence  Dr. Chapman, you now know why Daisy and I think he walks on water. I am feeling so blessed and privileged because today is the start of my "5 year cancer free year" and tomorrow I will make a marketing video with Dr. Chapman for Barnes!!! My CC family can rest assure I am going to use the word "cholangiocarcinoma" as often as I can!! LOL!! I can never post or say enough that I am alive because of God, 2 strangers and Dr. Chapman.
Brenda, I am not sure how far you travel but if I can help on your visit Monday, please ask. I would love to help give your husband HOPE!!
Lots of prayers and HOPE-Cathy

Re: Waiting......

Say, Celebrity! Congratulations on the start of your 5th year !!! You are truly a survivor and thriver!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Waiting......

Cathy, Thank you for your kind offer. We ar taking the train this trip because I am alittle leery of the weather this time of year, hey, it might be fun to ride a train. We are only 2 and half hrs away but I think the train is the way we are going,
You are a inspiration for me,  your story gives much hope. Of course you are alot younger than my husband, but he has always been so strong and healthy as a horse, I just want him to have a chance.  And Dr Chapman is really good at transplants from every thing I've read. We will be seeing either DR Kerr or DR Crispin at this appt also either a Mri or Ct. Our cordinater, Valeri Kopecky has stayed up on everything on that end and calls us often. For that I am thankful.
A nice man that also had transplant at  BJH has been in touch with Us thru e-mail and phone offering to help anyway possible also. Kenny is rather quiet but has decided he would like to call him. Things are not getting better as I am sure you know first hand.  We  know that BJH are doing all they can in making a good case for Kenny to Medicare to approve the transplant. He has a meld score of 20. Not really sure where that would put him.  Thanks so much for all you do to all of you, it means so much to so many I am sure.
Brenda

Re: Waiting......

Brenda, I am glad Kenny is going to talk to someone. There was a gentleman who was a CC transplant after me and has an amazing story to share. believe his name was Mike(??) and he will inspire Kenny.
Your MELD score is good but not high enough to get to top of list, but the higher the MELD score that means you are in major liver failure, which you don't want but... it is kinda of catch-22. Dr. Chapman is very aggressive in constantly applying for more points, I believe I started at 26 and ended up at 32 in a 5 month period. Your blood type determines which list you are on. I was B+ so I had a shorter list, but then you have a few less blood types to receive organs from, it is all catch-22!! Dr. Jeffrey Crippin is my liver doctor and another kind, down to earth good man, who is so approachable and easy to talk to, you will love him. Barnes was so good to me and they always managed to get everything approved, you are in good hands.
Good luck Monday and please call if you need a friend or directions in St. Louis, MO. (It is going to be real cold!!) (618-567-3247)
Lots of prayers and  HOPE-Cathy

Re: Waiting......

ok, so, I've got more lab results
T. BILIRUBIN 2.6
Albumin 2.8
AST  {SGOT} 60
ALT {SGPT} 40
Alkaline phosphatase  132
CONJUGATED BILIRUBEN 0.0
T.PROTEIN 6.6

CREATININE 1.5
BUN  13

  Thank you for the replys

15 (edited by PCL1029 Thu, 02 Jan 2014 00:00:31)

Re: Waiting......

Hi,
I think things in General should be ok for your husband based on the 2 lab work you post. Do been to worry too much.
However, some how the hydration and electrolytes  balance pop up in my mind.
Therefore ,the following discussion is more for that purpose whether than your husband in general.

Besides the total bilirubin  is  high 2.8 but may be affected by the chemotherapy; the ablumin is a  bit low but your  total protein is normal. the others like AST,ALT and ALK phosphatase are relatively normal for a CCA patient.Does your husband have diarrhea problem? how many times if so?  then hydration will need to be addressed; if not ,I will still ask the doctor what to do .
I quoted from an article about fluids balance in our body.so it may help in understanding the fluids balance importance. This is out of my experience and research range; I may actually go too deep on this subject this time;However, I think is important to know how to manage the hydration status while have ascites etc.
the quote is below from
http://www.nursingcenter.com/lnc/static?pageid=720126

"Albumin is produced by the liver. Among its many functions are its ability to maintain intravascular oncotic pressure. To facilitate movement of fluid throughout the body,  facilitate transportation of substances, and act as a free-radical scavenger. Levels of albumin depend on wellness or disease state of the body.When it comes to hepatic disease, acute hepatitis, or cirrhosis, albumin levels do not correlate well with the severity, prognosis, or level of total hepatic function.3 The parenchymal damage or loss has to be severe to affect the liver's ability to synthesize albumin. The mechanisms responsible for the decreased albumin levels seen in most cases of hepatocellular disease include increased immunoglobulin levels; third-space loss (extravasation into the extravascular space); and direct inhibition of synthesis by toxins."
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

16 (edited by PCL1029 Thu, 02 Jan 2014 13:58:16)

Re: Waiting......

Hi, eeveryone.

to answer the above please check link below

http://www.ncbi.nlm.nih.gov/pubmed/23169523


Also GI consult is recommended by my doctor friends in the hospital.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.