1

(10 replies, posted in General Discussion)

Haven't heard of it, but it sounds good!  I'd love to know where the study was done, and which hospitals are using it.

2

(4 replies, posted in General Discussion)

Hi-
As I posted a couple of weeks ago, my second attempt at a resection was halted due to the discovery of lesions on other parts of my liver.
Well, the biopsy results on the lesions have determined they are not cancerous!  My oncologists at MGH are shocked.  There is some disagreement about what they are.  The pathologist believes they were never cancerous.  He thinks they are the result of some kind of necrosis and were/are benign. The surgeon who did the laproscopy felt by looking at them that they were definitely a spread of the cancer.  My oncologists said that it was possible they were cancerous at one time but were killed by the chemo and are a "graveyard."  They are going to talk to the surgeon this week to share the results of the pathology with him, and see if he changes his original opinion of what he saw.  If he does, they may reschedule the surgery!  If he feels strongly that they were once cancerous, they would prefer to try to kill the remaining tumor with proton radiation.
Either way, it is good news!  I am having a hard time believing it, after all of the ups and downs, and I keep waiting for the other shoe to drop.  It is really hard to get my hopes up again.  I guess cautiously optimistic is the best way to describe what I am feeling.

Joanna

Hi-
As I posted last week, my resection couldn't take place because during the laproscopic look they found lesions on other parts of my liver.  I am meeting with my oncologists at Mass General on Friday, and resuming my chemo as part of the clinical trial I am in.  It did help shrink the big tumor quite well, so I am feeling okay about this.  I don't understand, however, why it didn't get rid of the lesions (that we didn't even know were there.)
I know I am not a candidate for surgery while there are other tumors, or radiation because they can't see the lesions on the scans.  What other treatments, besides chemo, are out there for someone in my situation?  How can they pinpoint the lesions if they can't see them?  If we can get rid of them, I can have a resection or radiation on the main tumor.
I have been trying to read whatever I can about chemoembolization, freezing, etc. but I honestly don't know which, if any, can help me.  Has anybody been in a similar situation, and if so, what was your treatment?
What questions should I ask the doctors?  At this point, I am so confused.
Thanks for your help!

Joanna

4

(13 replies, posted in General Discussion)

I will pray for a wonderful scan for your daughter!

Joanna

5

(22 replies, posted in General Discussion)

Well, unfortunately I am home already.  They could not do the resection.  When they went in with the laproscope, they did see that the tumor had shrunk enough for the resection, but they also saw lots of little lesions all over my liver.  Apparently they are too small to show up on the CAT scans.  So, they didn't proceed.
I am heartbroken, and can't understand how this happened.  I am meeting with the team on the 14th, after I heal up a little more.  I think they said radiation is out of the question for now, because they can't see the lesions on the scans.  It looks like back to chemotherapy.
I asked my doctor for a referral to a shrink.  I need someone to scream at.  I just really thought this time it was all going to be good.

6

(22 replies, posted in General Discussion)

Well, my resection is scheduled for tomorrow, and I don't think I will be getting any sleep tonight.  I have to get up at 3:30 to shower with the hipiclens and then we have to leave here at 4:15 to make it to Boston for 6:30.  I haven't slept well in a few days thinking about it.  Honestly, I am not nervous about the surgery.  I am nervous that they will change their minds after the laproscopic look, which is what happened in April.  I just SO want this surgery.  I want the cancer out of me.  I keep telling myself that this time, it will happen.  Now I just have to believe myself!

Congratulations!  I love reading success stories.  It gives a lot of hope!

I hate the anxiety that comes with waiting for scan results!  I wish you the best!

9

(8 replies, posted in General Discussion)

I am always cold lately, too. The grocery store just about did me in today because I forgot me sweatshirt.  I was told the chemo can do this.  My temperature, which is usually around 97.9, was 96.9 when they took it on Thursday.  The nurse wasn't concerned and said it can happen.  It's driving my family crazy, thought, because I keep shutting the air conditioning off!

Congratulations!  It is so encouraging to read this...it gives us hope!

Joanna

11

(17 replies, posted in Introductions!)

LeeAnn I will definitely call you to hear your story.  Thanks so much!

Mark, I had the opposite experience in April.  When I awoke and looked at the clock, I realized less than 2 hours had passed and knew they couldn't do the surgery.  I'm hoping the 2nd time is the charm!  Thanks for the info. on the procedure.  My pre-op isn't until Thursday, but I pretty much knew it would be a huge incision.  I'm fine with that...my bikini days were over in the 80s!  The surgeon kept stressing that the recovery would be hard but that he wasn't trying to scare me.  I had to tell him that once you are told you aren't going to live to see your kids grow up, nothing else can really scare you, now can it?  I am so glad it worked out for you.
It is so hard to read about how often this cancer reoccurs.  Is there anybody out there that remains cancer-free after a resection?  I hope so.  I know that this isn't really the end, that I will have to keep having chemo for awhile after and frequent CAT scans, but I love to dream that someday it won't have to be in the back of my mind all day, every day.
I do know that I am one of the lucky ones, so that is what I hold onto.!

Joanna

12

(17 replies, posted in Introductions!)

Oh, and as far as the side effects from the 3 drugs, well the panitumamab causes a horrible, acne-like rash on my face and chest because the skin there has the same kind of protein as the tumor, I think.  Something like that, anyway.  I am on antibiotics and an antibiotic cream but still look like some of the 8th graders I teach.  The Oxilaplatin causes an extreme sensitivity to cold...have to wear gloves just to take something out of the fridge and forget even going into the freezer.  I hate it because I can't drink anything cold and room-temperature water just doesn't do it for me.  Gemzar has made my hair thin...but other than that I haven't had anything bad.  Tired, but functional!

13

(17 replies, posted in Introductions!)

Thanks for the replies.  I am sorry to see so many going through this, too.  LeeAnn I am so sorry yours came back.  But as you said, we will fight this for our little ones.  You will be in my thoughts and prayers.  Can I ask, how was the surgery and recovery?  Did they make an L-shaped incision? The surgeon kept stressing it would be a large incision and the recovery would be taxing.  But honestly, I am looking forward to it!!

When I first started my fight, a co-worker shared her story with me.  25 years ago she had breast cancer that spread to her liver and her prognosis was poor.  She had young kids at the time and decided there was no way she was going anywhere.  She believes strongly in the mind-body connections and feels she helped cure herself with positive thinking, visualization, meditation, and prayer.  I have been working hard at each of those and I think it does help.  I visualize my tumor shrinking every night, and visualize my white blood cells being made like popcorn!  They have actually called me their "rock star of blood counts" because mine have never gone down.  Who knows if it is from the visualization or not, but it couldn't hurt and makes me feel better...at least makes me feel like I can control something!  She also bought me some books and CDs by Bernie Siegel...former surgeon who is now a strong believer in the power of the mind to cure.  I listen to the CDs while having chemo.  I also switched to a high Omega-3 diet that another cancer patient had told me about.  When I ran it by the nutritionist at Mass General she was in favor of most of it.  I have given up dairy, red meat except for grass-fed beef (high in omega-3, low in omega-6), no sugar (well, okay, sometimes sugar...I can't help it!) and lots of greens and fish.  Again, who knows if it has helped but something did. 

Marions, I think that is the same study I am in, but I wasn't aware Rochester was a part of it.  In order to qualify, my tumor had to have KRAS Wild-type protein, which about 60% do.  It can't have any mutations.  There were a lot of other criteria...couldn't have spread to any nodes or anywhere else, couldn't have more than 2 tumors, etc.  I just am so thankful  I am a wild-type!  Lol

Well, sorry my first two posts have been so long...it is just great to communicate with people who know what I am going through.  My husband is great and tries to get it, but how can he?

I will be more brief in the future, I promise!

Joanna

14

(17 replies, posted in Introductions!)

Hi, my name is Joanna. I would like to implore anyone diagnosed to get a 2nd, 3rd, and even 4th opinion about treatment options...I am convinced my 2nd opinion saved my life. I am 47 years old and was diagnosed in April. I didn't have any symptoms but could feel a hard mass in my upper right abdominal area so I convinced my doctor (who thought it was nothing) to send me for an ultrasound, which showed a 10 cm tumor.  Many tests and a biopsy later, it was diagnosed as cholangiocarcinoma.  It originated in the internal ducts of my liver.  The MRI results seemed to indicate that the tumor was contained in my left lobe, so surgery was scheduled for 2 days after my diagnosis at Hartford Hospital.  When they did the laproscopic look first, however, they realized it was not contained but had spread to a large part of my liver and was covering the hepatic artery.  I awoke out of anesthesia to the news they couldn't operate and to a surgical resident telling me it was "terminal."  You can imagine what that did to me.  He got reamed out by the chief surgeon, but she gave me less than a 10 percent chance of it shrinking enough with chemo. to ever be resected or cured.  When I asked if it was possible to live 10 years so I could raise my kids ( I have 9 year old twins), she said no.  I went into a pretty dark place for awhile, but then things took an amazing turn for me.  My oncologist in Hartford asked if I would go to Mass General to meet with his brother, who is a radiation oncologist leading a clinical research study on cholangiocarcinoma in conjunction with Dana Farber. The study involves using proton beams on the cancer instead of photon beams, which is supposed to help save more of the healthy tissue. Of course I jumped at the chance and we went to Boston and met with him (Dr. Ted Hong) and Dr. Eunice Kwak, who is leading a clinical trial in chemotherapy.  Luckily I qualified for both and began chemotherapy every two weeks in Boston.  The trial is studying the effects of adding the drug Panitumumab to the drugs Gemzar and Oxaliplatin as treatments.  After two chemo. sessions I could no longer feel the mass.  My first CAT scan, after the 4th chemo. dose, showed significant shrinkage, as did my 2nd CAT scan.  I met with both doctors after that scan, and they felt that after two or three more chemo. treatments they would try to kill the rest with radiation.  They also said they were going to run my latest scan by their surgeon to get his thoughts.  Well, he called me as soon as he saw it and asked for a meeting.  We drove up on Wednesday and met with Dr. David Berger.  He said the tumor is no longer on the artery and based on what he sees he believes he can surgically remove it!  My surgery is tentatively scheduled for the 4th of September.  They are just trying to make sure that if he finds anything in the laproscopic look they do first that would make him change his mind, I am not kicked out of the study...they have a strict protocol of time frames they have to follow for chemo. and I am not having mine next week in order to prepare for surgery.  But he also said that if he couldn't do it now, he is confident it will be at that point after some radiation.  He really feels, though, that based on what he sees on my scans, it is resectable now!  Less than 5 months after being told I was terminal.  Please don't give up hope...I did for awhile and it was a place I never want to be again.  During this time a co-worker of mine, who is a cancer survivor, taught me the power of positive thinking on the body.  I believe that helped me as much as the chemo.
Go wherever you need to go, find whatever trial you can, but don't give up.  I can't recommend Mass General highly enough for anybody who lives in the East!  Please say a little prayer for me that my surgery will be successful on the 4th.   I'll update you then.
Keep fighting the good fight everyone!
Fondly,
Joanna