cholangiocarcinoma.org :: discussion boards

jeffgrieder · Sun, 25 Jul 2010 06:19:55

Hello Everyone… I know it has been a long time since I have written on the board. It has also been a long time since I have even been on the site. But things have been kinda on an even road until now, hence, the update. However, I never thought I would be posting under this topic.

Just to get you up to speed. Marc has gone through 6 rounds of chemo and two Scans. We just had our appointment with Dr Tham Thursday to discuss the last scan. There really has been no change in the size of the tumor according to the report. But when Dr. Tham looks at it she feels that it is a bit smaller. Though it is still over 7 cm. She also feels that the tumor is no longer wrapped around the blood vessels and says his liver is not as extended as it was when diagnosed back in February. She did a side by side comparison of the scan for us from then to now and you can see the difference. She says that Marc is much healthier now than he was and she did not even expect him to live 3 months after diagnoses.

So here is the shocker. After being told that he would never be a candidate for surgery, Dr Tham is taking Marc’s case in front the Surgeon this coming Wednesday. Of course he could still say no. But if the surgeon were to say yes, I have to tell you, that Marc and I (and both of our families) are scared to death. From everything we have been told, everything we have read, surgery is a major risk. He could die on the table and or even have poor quality of life if he survived the surgery. That is Marc’s biggest concern I think.

But here is my concern. I have been trying to find something about it on this board and even look through my notes as I know I was once told this. I was told that his tumor had to be smaller than 2.5 cm before they would consider surgery and he is still over 7 cm. So I was surprised that surgery was still even brought up. Did I dream this? Should they be considering surgery with his tumor still so large? And is Marc the only CC patient with a tumor this large? I have not read anywhere of anyone having a tumor this large. So this surgery thing really scares us!

Any insight would be most helpful!!!

lulu07 · Sun, 25 Jul 2010 09:00:07

Hi Jeff - I don't know if this will be of help to you or not. I was diagnosed with intrahepatic CC in Oct 2009 on January 19 2010 I had surgery. Medical term for my surgery was Right Trisegmentectomy they removed the right and caudate portion of my liver and then performed the bile duct resection. In the right side of my lliver I had an 8cm CC tumor with a 2cm satellite nodule right behind it. Again I don't know if this will help because my CC was inside of my liver howevery, I wish you the best of luck and will keep you and Marc in my thoughts and prayers. Nancy

Linda Z · Sun, 25 Jul 2010 11:28:45

hi Jeff,

So many people on this Board have mentioned what size their tumors were, and I know that I have seen a number of them larger than 7 cm. At first I didn't know what size mine was, but checked a little while ago for comparison to others. The report I have says I had "8-10 tumor deposits up to 16 cm in greatest dimension". I had the left lobe removed and a part of the right lobe, with the gallbladder and a bile duct. All-in-all, the surgeon said it was 40% removed, but with a 16cm tumor, I don't know how that would be possible. Still the report does say 16cm. My surgery was in Apr 09, and I did well, with recovery of about 8 weeks. The only complication at the time was an abcess 2 weeks after surgery requiring a drain that was removed a week later.

Best of luck to all of you.

Linda

devoncat · Sun, 25 Jul 2010 15:13:20

Jeff,
I have been wondering how Marc was doing, glad you are back to update us.

Surgery is scaring, but from my perspective worth the risk. Lets hope the surgeon thinks he can get it all and that for Marc cc is just a memory.

Good luck.
Kris

dmeek · Sun, 25 Jul 2010 16:42:16

Jeff, I was diagnosed with CC in May 2004. Mine was one tumor, about 4-to-5cm in size. My surgeon mentioned size is just one consideration. Other things such as where it is located in the liver also matters. He also said up to 75% of the liver can be “removed”, and the remaining 25% can still function, and eventually grows back to normal size.

For me, they did remove 75% of my liver. I recovered pretty well. I was in the hospital about 7-8 days. Then, slowly each day of recovery I would notice I was getting better.

All surgeries have risks. And are scary too (I personally know that too)! But with me, surgery was the only possible hope in removing my tumor. And in an odd way, I was actually looking forward to my surgery. I knew I had a “cancer” in me, and I wanted it out!

I wish the best to you all of you.

Dale

marions · Sun, 25 Jul 2010 21:58:15

Jeff.....I am also happy to hear the latest report on Marc. Either way, I would consider at least one more (better though, two) professional opinions. Once you are sure of the option for surgery then more information will have to be sorted through. In the meantime I am crossing my fingers for good news coming your way.
Best wishes,
Marion

jeffgrieder · Wed, 28 Jul 2010 13:20:40

Well, we heard from Dr. Tham and the Surgeon said no surgery. There was no explanation as Marc will continue his chemo tomorrow and will talk to Dr Tham about it in person when he goes in tomorrow morning. So the game plan now is to continue chemo and then switch to radiation once the chemo stops working.

marions · Thu, 29 Jul 2010 00:20:42

Jeff......I suppose that you will receive more detailed information when visiting with Dr. Tham tomorrow. Marc has not signed up for the chemotherapy to quit working therefore, I wish for continued success. Please, keep us posted.
Good luck and best wishes,
Marion

Last edited by marions (Thu, 29 Jul 2010 00:40:23)

Gavin · Thu, 29 Jul 2010 04:06:33

Jeff,

I am sorry to hear that Marc's doctor said no to surgery. That must have been hard to hear. But Marc's fight is not over with this news so please do not give up hope. I hope that the chemo works as best it can and I will be keeping my fingers crossed for this.

Best wishes to you and Marc,

Gavin

jeffgrieder · Thu, 29 Jul 2010 10:25:08

Dr Tham said that the surgeon felt that the tumor is still to large for surgery. And come to find out, the radiologist was able to prove that the tumor is still wrapped around the blood vessels. Hence, the reason for no surgery.

At first Dr Tham was only going to administer 8 rounds of chemo. But she has now decided that Marc can do chemo indefinitely until it is not working anymore or that he starts to have extreme side affects. Luckily Marc has not gotten sick or lost any hair from chemo. Dr Tham will then consider radiation once chemo is no longer working.

And that is where we stand at this point.

Thank you all for your support and prayers!

marions · Thu, 29 Jul 2010 11:31:51

Jeff....For me clarifications seem to have a positive effect. You now have a plan, Marc feels good, and may it continue. Have a nice day.
Best wishes,
Marion

jeffgrieder · Thu, 29 Jul 2010 12:44:22

Agreed Marion and thanks for your positive thoughts. Even though it is one of those times where it is kind of a downer, at least now we can get back on focus with the chemo and continuing life as normal. We are going on an Alaska Cruise in September and making big plans for the 2010 Holidays. So we are moving on!

marions · Thu, 29 Jul 2010 13:08:06

Great to hear about your plans, Jeff. I have heard great things about the Alaska cruise. Have fun.
Best wishes,
Marion

cholangiocarcinoma.org :: discussion boards

#1 DATE POSTED: Sun, 25 Jul 2010 06:19:55

Marc "May" be a Candidate

#2 DATE POSTED: Sun, 25 Jul 2010 09:00:07

Re: Marc "May" be a Candidate

#3 DATE POSTED: Sun, 25 Jul 2010 11:28:45

Re: Marc "May" be a Candidate

#4 DATE POSTED: Sun, 25 Jul 2010 15:13:20

Re: Marc "May" be a Candidate

#5 DATE POSTED: Sun, 25 Jul 2010 16:42:16

Re: Marc "May" be a Candidate

#6 DATE POSTED: Sun, 25 Jul 2010 21:58:15

Re: Marc "May" be a Candidate

#7 DATE POSTED: Wed, 28 Jul 2010 13:20:40

Re: Marc "May" be a Candidate

#8 DATE POSTED: Thu, 29 Jul 2010 00:20:42

Re: Marc "May" be a Candidate

#9 DATE POSTED: Thu, 29 Jul 2010 04:06:33

Re: Marc "May" be a Candidate

#10 DATE POSTED: Thu, 29 Jul 2010 10:25:08

Re: Marc "May" be a Candidate

#11 DATE POSTED: Thu, 29 Jul 2010 11:31:51

Re: Marc "May" be a Candidate

#12 DATE POSTED: Thu, 29 Jul 2010 12:44:22

Re: Marc "May" be a Candidate

#13 DATE POSTED: Thu, 29 Jul 2010 13:08:06

Re: Marc "May" be a Candidate

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