It I don't take my pain meds, I have pain at about a six. So I'm very diligent about taking the pills. I have two large tumors in my liver and they are pressing against the liver wall, hence the pain. Occasionally the tumor in my lower spine acts up as well and radiates pain around to the front of my abdomen. I don't think I've had any reaction to my enlarged lymph nodes.

2

(9 replies, posted in Introductions!)

I don't know where you live but I'm here in Northeast PA and have been going to Fox Chase Cancer Center. I've been going through elaborate testing to find out whether I qualify for treatment with Spheres. It's a research study and I have a few more tests to have before they make a final decision.

Gem/Cis did not work for me.

I have two large tumors in the right lobe of my liver along with a number of small ones. There's also a tumor in my lower spine and my lymph nodes have been compromised.

A transplant is out because of all the other tumors and lymph nodes.

My advice is to find a large teaching hospital that has a cancer department. There are quite a few out there. We have a a discussion section on hospitals.

Good luck to you and your wife.

After reading these posts I feel very fortunate. None of my friends/family have deserted me, in fact they are all making an effort to really be here for me.

Quite possibly the ones who have stepped away don't know how to react/act with you. Cancer is a very scary thing and and some folks just don't want to deal with it. That's a shame because they aren't the ones who actually have the damn disease. It's a very selfish reaction.

Write a letter, send emails. Try just another time and if you don't receive replies just shrug your shoulders. It's their loss.

Good luck.

I was diagnosed with Stage 1V on December 2010.  Non-operable. The tumors did not respond to the gem/cis treatment so I'm enrolled in a clinical trial that begins April 27. Hopefully it will slow the tumor growth down.

Sorry you had to find us.

I have pain at least once a day. The two big tumors in my liver are pressing against it. Yeah, it hurts. Sometimes the tumor in my spine starts to radiate pain from the back to the front of my abdomen. That;s very uncomfortable. I got some new pain meds from the onc today so I'm hoping they will help.

6

(11 replies, posted in Introductions!)

Nurse 33 - I would come home every day from treatment and have to take a nap. I give a lot of credit to the people that actually went back to work after their radiation treatment. I don't like to be driven but I had to have my husband motor me back and forth from treatment as time went by.

7

(8 replies, posted in Introductions!)

Nancy is correct. I was only suggesting you look into it, not move him in this very second.

I'm thinking of giving them a call for myself even though I'm not ready to check out. Just something else to organize.

8

(12 replies, posted in Introductions!)

My sincere condolences.

9

(8 replies, posted in Introductions!)

You certainly have received more than a second opinion. Unfortunately if they're all saying the same thing, you know that's more than a ring of truth in it and for that I am sorry. I just started to go to Fox Chase Cancer Center in Philadelphia PA. If all goes well I'll be in a clinical trial which begins late in April.

You should get a hold of your local hospital and/or your Onc for hospice information. Your husband may not need it now but it's easier to have everything in place for when you do. Sometimes you just have to be practical.

Glad you found this forum. There are a lot of folks going through difficult times and it helps to share.

Good luck!

10

(11 replies, posted in Introductions!)

What an ordeal! Good luck with the chemo... what are you going to be taking? I've found that chemo is easier to deal with than radiation. But I'm sure many others have found just the opposite.

11

(15 replies, posted in General Discussion)

I found out I had CC when my 7 1/2 month "cancer free" MRI was being read. I was treated for liver cancer before that... had my left lobe taken out and supposedly all the tumors were gone. Well they came back with a vengeance. Besides whatever is left of my liver being inundated with tumors, I have a tumor at the base of my spine. I cannot be operated on. Gem/cis did not work. Hopefully I will be accepted into a clinical study with Sir-Spheres.

Previous to my liver cancer, I had anal/rectal cancer where they took out a huge tumor and gave me a permanent colostomy.

It's been quite a haul since May of 2009.

12

(13 replies, posted in Introductions!)

Write your questions down and ask your Mom's doctor. Take notes. In fact, begin a notebook where you can keep things organized. A lot of us do that.

Sorry you had to find this forum!

13

(14 replies, posted in Clinical Trials)

If this is a harbinger of how things are going to go... the Study Coordinator called me today and said she can't get my CT results because they weren't ordered by an on-staff physician. Oh, I said, it was most certainly was!


Am I just being silly? Is this just a fluke or the way things are going to be?

14

(24 replies, posted in Introductions!)

A med spread sheet - great idea! I should make one beginning with what I'm taking now.

15

(14 replies, posted in Clinical Trials)

If anyone can change the formula for barium and make it palatable, they'd make a mint.

So the CT scan was done today. No biggie except for the barium. I imagine I'll hear results from this and my blood tests in a few days.

16

(10 replies, posted in General Discussion)

If I get into the trial, I'll be starting SIRTS in April. The chemo is capecitabine. Is that what your wife took? How did she handle it?

17

(24 replies, posted in Introductions!)

@Pam - I keep a notebook too. It's a great idea an really keeps things organized. (Something I can always use help with.)

18

(14 replies, posted in Clinical Trials)

Had to drink barium for tomorrow's CT scan. Yuck. There's more for tomorrow.

19

(14 replies, posted in Clinical Trials)

Lainy wrote:

Joolz, best of luck on your big rehearsal the beginning of April. April means Spring and Spring means new beginnings and that is what I am hoping for you!

Yep. Spring is for all new things.

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(14 replies, posted in Clinical Trials)

marions wrote:

Joolz....good luck and regarding Xeloda it is a drug commonly used for this cancer.  You know how to find previous postings?  Go to top, google function, type in Xeloda....and voila, tons of postings will appear. 
All my best wishes,
Marion

I looked it up on the Net and found a lot of information already. I keep forgetting this board has a search function!

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(14 replies, posted in Clinical Trials)

who will be injecting the radioactive beads into me. He came across as competent but not arrogant. If I'm accepted into the study (still waiting on test results and I still have to get a CT scan) he'll do two takes. The first is a trial run and the second is the real thing.

This is the chemo drug I'll be taking:

http://www.rxlist.com/xeloda-drug.htm

If all goes well, the trial run will be on either April 1 or 4 and the actual procedure on April 14.

I saw a scan from my January MRI. No wonder I have pain. Two of the liver tumors are huge and press against my abdomen. I saw a lot of little tumors too.

Nancy - Thanks for the best wishes! I'm hoping it brings me positive results too instead of just side effects.

@Marions - Thanks for finding the study!

Lainy wrote:

Joolz, I find this news very exciting and wish you all the luck in the world. I have one problem though. Do ya think maybe they don't have to put a Gender on it by calling it SIR?  Just kidding, this is great and I love your attitudes!

Yeah, Sir-Spheres bothers me. To Whom It May Concern Spheres is much better!

I will be taking part in a clinical trial called "A Phase I Study of Capecitabine in Combination with SIR-Spheres in Patients With Advanced Cancer."

Obviously Fox Chase came though and found me something.

The gist of the treatment is planting Sir-Spheres, tiny little radioactive beads, as close to the liver is possible. These beads are "hot" for about two months.

Along with this "planting" I will take Capecitabine (2 pills daily) for 14 days. There's a break for 7 days. Then the pills begin again for 14 additional days.

There's a plethora of possible side effects including nausea, mouth sores and pain the hands and feet. Oh yes, and fatigue. I'm a pro at that one.

We're meeting with the doctor who is overseeing the study on Monday afternoon.

Sir-Spheres is a registered trademark of Sirtex Medical Limited and the study is sponsored by them.

Bruce said we'll be able to use me as a nightlight.