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Question about liver tumors

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

My husband was diagnosed in Aug with stage IV colorectal cancer with a dozen or so mets to the liver. His tumor markers were at 4400. He started chemo right away (Folfox, 5FU and Avastin). His tumor markers are now down to 260 and the tumors have been shrinking. Just a few days ago his bilirubin levels started going up (from 2 to 11) and his doctor thinks one of the tumors in his liver is getting bigger. He's doing another CT scan tomorrow but he thinks that he won't be able to do chemo anymore because of the response from the liver. Please tell me somebody else has had similar problems and there is a solution!

cbcardb12
Posts: 85
Joined: Mar 2009

My husband had the same thing happen. He started out on Folfiri, but had progression and was switched to Folfox and is currently stable. No real shrinkage, but not progression either. When it happened to my husband, I was told that that was very common, and it was a matter of finding the right combination of drugs. Has he been placed on Oxiplatin yet?

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

My husbands doctor really didn't give any hope that there was any other options....he kinda implied that this was the end of the rope! He hasn't been on any other chemo yet. His doctor did tell him that the Eributux wasn't an option. I believe there is only 1 other chemo option from what he explained. We're seeing another doctor Jan 7 but I'm not sure he should go without chemo for 4 weeks if the tumor is growing. Thanks for your response! I feel like I'm hanging on by a thread and any positive input is a god send!!

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Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Phoebe

I wanted to thank Kathy (luvinlife2) for plugging me this afternoon.

After almost 6 long years, I finally heard the words NED - it will be easier for you and your husband to read about it on the posts than for me to try and write it back out.

The posts for you and your husband to read are:

1. Craig and DaVinci - A Sundance Post Surgery Wrap Up Story

2. UT Southwestern and Craig's DaVinci Story - Posted to UTSW Website

Several doctors told me back in Dec2007, when I had a huge met (9cm) to the liver, that seeing another Christmas was highly unlikely...well, it's Christmas 2009 and I finally reached NED after many years of the struggle. I have proven all of them wrong.

I am wishing you and your husband all the best - you can also read my profile by clicking on my board name, sundanceh, and alot of my story is there too...I hope I can provide a sense of hope that all is not lost - I switched doctors too and continued to get opinions and took my health into my own hands...I've received a blessing and want to try and help others with my story.

Bless you both and Welcome to the Semi;colon side of the house :)

-Craig

kdo29
Posts: 25
Joined: Sep 2009

my mom had a liver ressection in september and you gave me some positive hope through your msg.i was reading on here tonight and just thought i would send a msg your way. my moms LR went smoothly and she had a scan bout a month ago. it showed a small spot less than 1 cm on her liver..they are planning to do chemo..she did the first treatment and went back in two weeks for the 2nd one and they told her that her white blood count was down so they couldnt do it...is that normal so soon...they also said another liver surgery is a possibility...that scares me to death...to be honest..i hope she wont ahve to go throught hat again.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

WBC down after 1st treatment?
mine was too- ended up in the hospital with a blood infection
they put me on WBC building shots and I was good to go for the next treatment
never missed a treatment again due to blood counts!

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

Once he gets his CT scan you will know where you stand. There are other chemo options out there, you never know if the next one will work better. If this oncologist is giving you no options then it is time to get another opinion. Since George is now doing good with his treatments we are staying the course for now but I sure got a lot of questions for the oncologist at our next visit in January, i.e., cyberknife, RFA, theraspheres, sir sphires, HAI pump. I think it is time for us to see a liver specialist and explore what is out there. We are also dealing with lung mets so I'm not sure of our options at this point. Some on this board have had the HAI pump which delivers chemo directly to the liver. Don't give up, there are other doctors and options for you. Take care and let us know what the CT shows. Tina

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

All the support has been such a comfort to me! Yes, it is my husband and myself in the picture and he is only 53. I have good days and bad days. It's the bad days that I rely most on all the positive posts. Thanks again and I will let you know about the outcome!

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

As a care giver I know what you mean about good/bad days, this cancer scares the heck out of us caregivers.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

was first dx'd in January of this year, My CEA was at 1400! I'm at Stage 4 cc with inoperable multiple mets in the liver, on Folfiri w/ Avastin now shrunk down to cea from 1400 to now 60, I had a little rise in my cea this past scan, nothing big to worry about she said, and liver enzymes were a little lower, but nothing to worry about as well, but keeping an eye at it at the same, though I'm not one to look at numbers and I don't know, I just want to live without worrying about the numbers all the time, as long as I am feeling good and still here the next day with my kids, that's all that matters to me :)

Hugsss!
~Donna

zenmonk
Posts: 198
Joined: Nov 2009

Get more opinions. There is always more than just one option.

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Dx March 08, CEA 8000+, 10+tumors in both lobes of liver. I wasn't considered a surgical candidate. After 6 rounds folfox 6 w avastin I became one. The lowest my CEA got before surgery was about 200. A lot has happened since then but here are some things you can do to get to that first surgery or move closer to NED. Your Dr is right about his liver. He has to monitor your husbands liver function. If it begins to fail, your husband will have to stop chemo. A 2 bilirubin is high elevated and an 11 is an indicator that something could be wrong. 5fu and oxaliplatin put a smack down on the liver, combine that with cancer and things diminish easily. RFA is an option for any small tumors 1-3 cm. I have heard of some bigger ones getting zapped but the shape and location determine that. If liver function is a concern, I probably would avoid the HAI procedure, and I doubt you could find a Dr to do it. I recently had several of my tumors embolized. My procedure was called a bland embolization (bland meaning without chemo). It put the smack down on half a dozen tumors in my right lobe. I still have my left lobe to do but currently my fight lobe is cancer free. The procedure only lasted an hour or so and I spent the night in the hospital. For me, I consider this procedure as effective as either of my resections without the pain, suffering and down time. They stick a scope in your leg, go up and into your liver, They find the tumors and pump in some stuff that clogs the blood supply to the tumors. They clog both the upstream and downstream arteries, if they sandwich in some chemo, it's called chemo embolization. Cyberknife and gamma knife could also be an option.
Try to get his liver function back to normal, .5-1g of resveratrol scattered through the day kept me alive for 6 months when I should have been dead.
Also, try to remember you husband has been living for some time with cancer. It sounds as though he has had an excellent response to chemo thus far and has significantly reduced the cancer in his body. When he quits chemo, he'll probably get back to his old self quickly and be quite well for sometime. Who knows, by the time he needs to readdress his cancer, new things will have been introduced to help in his battle. Good Luck

eric38's picture
eric38
Posts: 588
Joined: May 2009

There are always new things coming out and one doctor might know something another one does not .Also, some doctors are not as positive as others. One thing i`ve noticed about the stage 4 survivors on this site is that they were all pro active. There are some who were told they were inoperable but a surgeon some place else had a different opinion. You are fighting for your husbands life so I say seek second, third , and fourth opinions. There are people here who were given no hope but they some how prevailed. I suggest Md Anderson. They are on the cutting edge of everything. There is a doctor ther named Steven Curley that specializes in mets to the liver. Don`t give up - Where there is life, there is hope and where there is hope, there is faith and where there is faith miracles happen.

Eric

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

I'm really worried now. We got the results from the CT scan and doctor can't tell from the scan that his bile duct is being blocked and the liver tumors haven't changed much. He's not sure why is bilirubin is now up to 13. He also said that it looks like there are some new lesions in the lungs. He thinks his liver is shutting down. His belly is terribly distended and it's going to be very difficult to find a surgeon to remove the fluid over the holidays. His doctor says he probably quit responding to treatment a few weeks ago even though his tumor markers are still going down. I'm wondering if it's possible that all the pressure from the build of of the fluid is preventing his liver from functioning properly. Any input is greatly appreciated!!

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

If he's feeling ok, you guys try to enjoy the holidays. Has your Dr mentioned anything about the disease possibly being disseminated? The fluid build up is definitely troubling and can impact liver function. Once the fluid is drained things could improve, he may have to continue to get the fluid drained. The liver shutting down part is definitely a concern, your Dr probably has some other evidence he isn't sharing.

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

I had a tumour in the bile duct. The doctor
saw it on the pet/ct scan and then ordered an
MRA and an MRCP (its a special test they do in the same machine as an MRI)
Then they did a biopsy with an ERCP (like a reverse colonoscopy,down the hatch
instead of up the bum. you are asleep.)
they were able to remove all visible tumour with the biopsy and now I am on folfiri
to get any micro bits remaining. and they put in a stent to prevent the duct from being blocked.
A blocked bile duct is a serious thing sorry to say.how serious depends on where in the duct it is located.the duct transects the liver,gallbladder, pancreas, appendix
and duodenum. I just had my ERCP a month ago and they are doing another scan in a couple weeks.they said they have to keep a careful watch on it.
good luck
and God bless
kATE

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

You're right, he mentioned that there was some "caking" in the stomach which indicates the cancer is spreading to his stomach. My focus is trying to get the fluid drained but that is proving to be very difficult over the holidays. What he didn't tell us was how long he can go without drainging the fluid before it becomes detrimental.

krf's picture
krf
Posts: 99
Joined: Dec 2009

Hi- Just checking in with you. Any luck getting the fluid removed?
I have been thinking about you and your husband.
Sending prayers your way...
Kim

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

No, unfortunately we haven't been able to have the fluid drained. But today is Monday and I'm going to concentrate on finding a surgeon. Thank you so much for your concern! Our friends don't really understand the situation and some of them are starting to hint around that it's time for hospice care. They don't really understand the ups and downs that go along with cancer. Thanks again!!

krf's picture
krf
Posts: 99
Joined: Dec 2009

It is true that unless you are in this beast you do not understand it- I think that is true for us as caregivers as well.
Monday better have those surgeons back at work! Good luck. I will be thinking about you today.
Kim

eric38's picture
eric38
Posts: 588
Joined: May 2009

On the lighter side - you and your husband make a really cute couple.
Eric

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

We finally had the paracentesis done today. They drained 4 pints of fluid and he lost 8 lbs. He did experience a lot of pain at the injection site for about 30 minutes or so after the surgery. On the downside...his bilirubin is 18.1 which means is liver obviously isn't functioning. He sees the gastro doctor tomorrow for an ultrasound of the liver. I can only hope they find something they can do to improve the liver function. Has anyone ever experienced this sort of thing and been able to recover. I fear the worst!

Eric...thanks I think we make a cute couple too! ;-)

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

4 pints of fluid, at least this should afford him some relief. Are they testing the fluid? Don't know anything about the liver function item but just wanted to let you know that I was thinking about you two all day and wondering what was going on. Please keep us informed. Is your hubby home or in the hospital? Take care - Tina

krf's picture
krf
Posts: 99
Joined: Dec 2009

I am glad he has had some relief from that pain. I am so sorry for the pain and fear you are going through. I am hoping for the best.
Kim

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

Yes, he is home resting. Still has some pain at the injection site but I guess that isn't unusual. They are testing the fluid....we see the doctor again next week.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Phoebe,

I've read all the dialogue back and forth of the above posts. Although I really don't have a lot of advice to offer, I just wanted to let you know that I am praying for your husband- and you too! I hope and pray that you find someone to get some additional opinions from and that you'll be able to get in and get these opinions quickly.

Take care-
Lisa

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

I'm so glad you were able to bring him home, sometimes that is the best medicine to be in your own home and bed. I was thinking about you all day yesterday and hoping he would get some relief from the fluid. Did the doctor give you any indication of a treatment plan or are they putting that together for your visit next week? Take care and make that guy some chicken soup - Tina

krf's picture
krf
Posts: 99
Joined: Dec 2009

Glad to hear he is home. Is the gastro doc still doing an ultrasound today? Thinking about you all the time. Hope you can get yourself some rest so you can stay healthy and strong.
Kim

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

Unfortunately the doctor told us yesterday that there is no treatment plan for the cancer. The only thing they can do is to try to improve his quality of life. We see the gastro doc today and the ultrasound. We then go see another Oncologist Jan 7. I think the main concern right now is his liver problems. Ugggh!!! Thanks for all the prayers!!

krf's picture
krf
Posts: 99
Joined: Dec 2009

As much as I want everyone to have a good QOL, I hate hearing that phrase! We have heard it quite a few times so far in this journey- it is a scary phrase.
Good luck today. Thanks for keeping us updated.

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

So we made it to the GI's today but we didn't get to see him. We ended up in the ER. Michael was experiencing severe pain in his arms and collarbones. After performing the ultrasound they realized he has gallstones and it is possible he may have passed one through the common bile duct. I was pleased to hear this news initially because I was sure that the gallstones were the reason his liver is not functioning. The doctors don't want to do surgery on him because his blood clotting factor is so high not to mention all the other issues. So we wait for another scan to see if the bile duct is blocked....Jan 11...I wonder if a person can live that long if the bile duct is blocked!!!

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Why do you have to wait so long for another scan? couldn't you just go back to the Er and have them scan? Be as proactive as you can. Not trying to scare you but I would just want to be scanned sooner than Jan.11th Patti

krf's picture
krf
Posts: 99
Joined: Dec 2009

Jan. 11 seems like a ridiculously long time to wait. Perhaps his onc can facilitate a quicker scan? I know here they are running the machines almost 24 hours a day- one of my husband's scans started at 8:30 p.m. I hope someone on your medical team can get this done quickly.
How is his pain now? Are you still in the hospital?
Thinking of you...

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

That seems way to long to wait unless they have given him something to break up the stone. Gosh, you guys just have one thing after another but I know you are fighting as hard as you can for Michael. Is he still in the hospital and if not, should he be? Push as hard as you can to get that scan moved up unless there is a specific reason to wait that long. Please keep us informed, we worry about you two. Take a deep breath Phoebe and try and get some rest yourself. This crap is hard on the caretaker also, seeing someone you love in such distress. - Tina

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