Thank you all for your thoughtful comments and well wishes.
My husband was diagnosed with CC November of last year. It's almost a year.  We started out on gem/cis. Condition was stable.  Bilirubin was pretty much normal, slight elevation in alk phos.  Went to a major medical center where they performed a TACE.  while waiting for tace and for 4 weeks after no chemo. During this time the large mass that was TACE showed cell death (left) but the right side showed disease progression.  New Onc said he would probably have done TACE but would have kept hubby on low dose gemz to keep the right side from progressing.  Be that as it may, the new Onc started us on Irirenotecan & 5FU.  We have seen a dramatic increase in Bili and AlkPhos.  Had scan last week, disease is progressing. Onc. decided to increase and add Oxi plus Irirenotecan & 5FU.  2 doses of that.  Husband could hardly get out of bed as a result.  So tired the Onc ordered another CT scan.  Scan shows liver damage and water accumulation and disease progression.

Onc has ceased treatment and says the liver is too badly damaged.  Has recommended we seek Hospice  care and he gave my husband 2 weeks.

His Bili is 2.6 he is jaundice; his Alk Phos is 1063 and the Asp Amino is 108.

I still have faith that his liver will get better since the treatment will stop.

We have been to Memorial Sloan, John Hopkins, NY Pres and a local Onc.  I can't think of what else to do next.

A dear friend said to us "now you will just have to REALLY trust God".  You have worked with Dr. etc, hoping God would use them, and he has chosen not to, not just have to solely depend on HIM ----- AND WE ARE.

Continue to pray for us, and I will continue to pray for you all and that there will be a cure.

Blessings,
EDH

You both have been extremely helpful.  I really appreciate the quick response.
Laurkcp, the 1400 you reference above was that a bilirubin number or was the 1400 the alkaline phosphatase.  Currently my husband's Alk Pho is at 1063, I am so concerned.  It's be increasing each time we have blood work done.

Thank you and Blessing,
EDH

Hello all,
I've posted in the past and need your assistance in plain talk.

I am confused by these liver function measurements, Bilirubin, Alkaline Phosphatase and Aspartate Aminotrans. 

How do you read the "range" vs. the values.  for example if the range for Alk Phos is 32-91 IU/L and your blood work indicates your value at 1063, how do you make sense of these numbers.
Would appreciate any feedback.

Blessings, and Thank you.
EDH.

Saw this article in the WSJ and wanted to share it. Treatment looking promising.
Here is a summary:

In studies being presented Saturday, researchers said two experimental drugs by Bristol-Myers Squibb Co. BMY -0.03% significantly shrank tumors in some patients with advanced skin, lung and kidney cancers.

Here is the link:

http://online.wsj.com/article/SB1000142 … malertNEWS

God, I hope this is the answer!
EDH

Oops to God be the Glory!!!!

A great big happy birthday, and to Gold be the Glory!!!
EDH

7

(15 replies, posted in General Discussion)

Kris,  I know it's frustrating and we were so hoping for really great news for you as well.  I am thankful that there is good news. We continue to stand and encourage you. You are a tremendous inspiration to all.  Be encouraged, continue to fight and most importantly, KEEP HOPE ALIVE. It is the driving force to your and our healing.

Refuse to be discouraged!
EDH

Marion,
Thank you for your thoughtful response.  Yes, a CT or MRI should be repeated to provide clarity. I also read that a false negative can occur if the  PET/CT was taken a short time  after a chemo treatment.  I would think that the radiologist would advise that this can occur.

Please keep us in your prayers. My heart is a little heavy tonight.

Peace,
EDH

Thanks Marion,
It wasn't a new med, it was a new scan.   Previously my husband had only had a CT and MRI.  The Dr. Ordered for the fist time a PET/CT and the PET/CT register no cancer activity.   

We shared the slides with a 2nd Onc who dismissed the report because no previous PET hand been done.

Needless to say my husband is very depressed as a result of the 2nd Onc view.

If there is anyone out there who has had similar findings please advise.



peace,
EDH

10

(9 replies, posted in General Discussion)

Peephorse,
My heart goes out to you and your family. 

Lainy is so right about letting your dad know that you're going to be OK and it is ok for him to find peace.  If he is able to talk listening is so important to his peace. Allowing him to communicate to you things that he might want done. Knowing that these thing are done will give him peace.  It may be something so simple as water the grass. 

My heart goes out to you and you are in my prayers.

EDH

11

(61 replies, posted in Introductions!)

Sandi,
You are in my prayers. We are here for you. If you can find peace in God's word I would encourage you to find peace and strength there  God's word has helped me and my family tremendously. 

Praying for you.
EDH

As I shared in an earlier post, in November 2011 my husband was diagnosed with I-CC.  Condition is stabilized on Gemzarand and cisplatium.  Wednesday he had a PET/CT scan. His primary oncologist was confused by the impression: no evidence of FDG-avid disease and (2) large non-FDG-avid heterogeneous mass in left hepatic lobe, similar in size as a previous CT.  Differential diagnosis includes treated disease versus non FDG-avid disease.

Primary oncologist does not know what to make of it. 2nd Oncologist said that because there was no previous PET scan the results are unsure because if the mass lit up before and does not now light up then you could say cancer is inactive, but because there wasn't a previous PET the results are inconclusive. And there we should stay on chemo.

Doe anyone have any experience or thought or recommendations on these confused results.

Also the 2nd Dr. Recommended that we stay the course on chemo, said surgery nor embolization  are options for my husband because he has one large mass on the right and two smaller (too small to characterize with PET or CT) spots on the left.
I praise God that he is stable. But would love better news and better options.

Any thoughts would be helpful.

Kris, I am praying for your good success next week. Also I reached out to Dr. Kato's  office, have not heard back. Will call again on Tuesday.
I am praying for all.  Stay strong and keep the faith.

EDH

Byron,
Thanks for sharing.  How did you do on the chemo emb. Since my husband is not a candidate for Y90 the Dr wants to move right to bland embolization. I would think the next step would be chemo before bland.  Since bland will cut lf all blood supply to the liver treated and cause thattreated area to die off.  Did your dr mention anything about bland embolization?

We have seen two Doctors there, an oncologist who says we should hold the course of treatment that my husband is on and a surgeon who say my husband is not a candidate because he has a very large mass on the right liver and two small ones on the left. His condition is stable on cisplatium/Gemzarand. We want to improve.  We have asked about a transplant and have been told they are few and that my husband probably would not qualify. 

We are at a loss for what to do next hence our out reach to Dana and John Hopkins    We also met with a local interventional radiologist who did a map procedure for Y90. My husbands shunts are too long 21. Standard is 20.  He recommended bland embolization, but my husband got so sick from the mapping because the Dr. Had to seal off an artery to the stomach. And that caused my husband tremendous pain and a 3 day hospital stay.

I just don't know what to do next. We would like to work with someone who specializes in CC oncology. I don't know if I will be successful I. Getting my husband to return to MMSK.  He was a bit put off. 

We need a creative miracle.  Thanks for listening.
If anyone has suggestions, we are open.

Kris thanks
Would love to talk off line. Is that possible?

Kris
Thank you for sharing those thoughts. They are powerful and life giving. Thank you

Kris,
I am praying for you, and I can't wait to hear the reschedule date. I am excited for you. Noticed your are in PA.  I know you probably posted where you are being treated already. I am new to the site. Can you share with me please and also what Chemo you were on.

Friday my husband and I are going to Dana Farber in Boston and Tuesday we are going to see what John Hopkins has to say as well.  We are believing God for a creative miracle.

Praying for you and the rest of my CC family.

EDH

Lita,,
My prayers are with you. And you have come to a great place.  I completely understand your feelings. Please share with us what chemo your husband is on.

And may I share with you my humble thoughts regarding this horrible disease. My husband was diagnosed this past November 2011, and every day we thank God for another day and we continue to see and believe our future together. The mind is a powerful thing.  We also have pictures of an undiseased liver in the bathroom and in our bedroom.   

You have a future with your husband believe God for it. I praise God for all of the wonderful doctors we have met, and we have also met some that weren't that nice (poor bedside manners), but at the end of the day it is God who has the final say on who lives and who dies.

LIVE and keep on LIVING.

Blessings and you and the rest of our CC family are in my prayers

Be encouraged.
EDH

Lita,,
My prayers are with you. And you have come to a great place.  I completely understand your feelings. Please share with us what chemo your husband is on.

And may I share with you my humble thoughts regarding this horrible disease. My husband was diagnosed this past November 2011, and every day we thank God for another day and we continue to see and believe our future together. The mind is a powerful thing.  We also have pictures of an undiseased liver in the bathroom and in our bedroom.   

You have a future with your husband believe God for it. I praise God for all of the wonderful doctors we have met, and we have also met some that weren't that nice (poor bedside manners), but at the end of the day it is God who has the final say on who lives and who dies.

LIVE and keep on LIVING.

Blessings and you and the rest of our CC family are in my prayers

Be encouraged.
EDH

Agudun,
I applaude you and I am praying for complete remission for your husband. Please keep us posted.

Keep the faith,
EDH

21

(8 replies, posted in Introductions!)

Thank you all. I will keep you posted and will share whatever I learn.

Marions, thanks.  My concern with the bland embolization is what happens to the dead cancer cells and potentially the dead lobe of the liver?  The Dr who recommended this is on vacation, hopefully he will be able to respond when he returns.

Pam thanks for the sleep recommendation.
Lainy,thanks for NY Pres.  Someone else recommended them highly.

Thank you for your support, it really brings tears to my eyes just to see the responses already.

Praying for a cure and praying for all of us.
Peace to all,
EDH

Pam, congratulations. That is fantastic news. My husband went for the mapping last week and we were told his shunt is 21 so he is not a candidate. He also got really sick from the mapping.  He had severe pain, loss of appetite and now platelets are down. We were really hoping to be able to do the procedure   IR has now recommended bland embolization. We understand it can be very painful. The process is to cut off all blood supply to the tumor. My question is if this happens how does the body rid itself of the toxins? 

Where are you having your procedure done?
I will keep you and Lauren in my prayers. Keep the Faith.
EDH

23

(8 replies, posted in Introductions!)

Dear all, I am so encouraged by your post and your stories. You all have been a help as well as a blessing.
My husband of 26 years was diagnosed in Nov. 2011 with CCC. His condition is stable. He is in cisplatium and Gemzarand is tolerating well. We want to be more aggressive. Wondering if anyone can advise on the following:
1. Bland embolization vs chemo embolization. Interventional radiologist wants him to do the bland. We have lots of questions.
2. Treatment centers. We are in the NYC area and have opted not to go to memorial Sloan and are looking at John Hopkins or Dana Farber. Wondering if one is recommended over the other for CCC
3. Platelet count has recently dropped after this last treatment. Should we be concerned?
4.  Sleep, my husband can't seem to sleep. Any recommendations would be appreciated.

I am thankful for this community. I will be praying for all, please pray for us, I know God is going to give us the victory.
EDH