• From: Wilmington, DE
  • Registered: Sun, 31 Oct 2010
  • Posts: 65

Topic: Good News

Hello Everyone,
I thought I posted this but I don't see it on the site. I went to JH for another follow up MRI on September 13th. My tumor is stable.
I have not had any treatment for CC since I had the Chemo-embolization on March 13th.
My bilibrubin is started to creep up (1.3) it was always normal. I know this sounds weird but it feels funny not having treatment.
I don't have any symptoms, just need a nap in the pm.
I do go back for another MRI in November. I don't post all the time but I read everyone's comments. Alot of times, I just sit here crying.
9/26 will be 11 months that I have been diagnosed with unresectable intrahepatic CC stage 111 b.
I wish there was a support group for CCC. I do go to one but not specifically for CCC. I have a great amount of support at home and at work.
I hope everyone is having a good day! regards, Johanna

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Good News

Dear Johanna, this is weird as I remember answering your post! But all the same, you get another YIPPEE.
I have been in touch with Mayo Clinic in Phoenix and this particular department just had a change of managers and I need to give the new manager time to settle in. They did not say no but  because there are not enough patients with CC (I think 1 is too many) a support group would not work at this time however, I did send them brochures (50) for various Cancer Departments and I did get my foot in the door. This is a slow process. I will probably call him again in October. Bottom line is that we would have to be part of their Cancer Support group so we may do that, as something is better than nothing for a start. Also MD Anderson is opening here next week and after they have some time to settle in I will call on them as well. Honestly for myself, I felt I learned so much more on this site than I would have in a support group. With all that said it can't hurt to go to any Cancer support group, just know that most of them have not heard of CC.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,841

Re: Good News

Hi Johanna,

Great to hear from you and thank you so much for letting us know how you are doing. This is good news and thanks for sharing it with us all, stable is good! And great to hear as well that you are having no symptoms and are just taking an afternoon nap. Hoping for more good news from you in November with your MRI and I will keep everything crossed for you. Please let us know how this goes. I hope you're having a good day too!

My best wishes to you,

Gavin

  • From: Wilmington, DE
  • Registered: Sun, 31 Oct 2010
  • Posts: 65

Re: Good News

Hi Lainy,
Thanks for writing back. None of my nurse colleagues had heard about CC. Maybe I will ask Hopkins about a support group.
Have you heard about anyone not having treatment for 7 month?
As always, thanks, Johanna

  • CM
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  • Registered: Fri, 09 Jul 2010
  • Posts: 116

Re: Good News

Good news Johanna- Stable is good, really good - enjoy it as you deserve it.
It takes a 6 month break from chemo in general to consider it a true "break" with regards to your body and the "half life" of the drugs- so 7 months is normal in general terms- as for CC there is not really a normal. As long as the disease is not active I guess leave it be!

  • CM
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  • Registered: Fri, 09 Jul 2010
  • Posts: 116

Re: Good News

Good news Johanna- Stable is good, really good - enjoy it as you deserve it.
It takes a 6 month break from chemo in general to consider it a true "break" with regards to your body and the "half life" of the drugs- so 7 months is normal in general terms- as for CC there is not really a normal. As long as the disease is not active I guess leave it be!

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 777

Re: Good News

Thanks for sharing Johanna. At least it is stabilized and if you don't have any symptoms, be thankful for every "normal" day you get! I love to read the good news reports: they give me strength and hope. I will be praying that your November scan is as good as this last one!
I do not go to a cancer group, as the easiest ones for me to get to are all focused on breast cancer. While I realize that some breast cancer patients have it worse than cc patients (a good friend has had 2 breast surgeries, now it has moved to her liver and there's little hope) it isn't the same as going to a group off cc patients and survivors that have the same chemo stories, treatments, etc. I need to do a little more research and maybe find somewhere fairly close I can go to once in a while.
Anyway, thanks for posting the hopeful news. It is so great to hear when things are going better for people.
Kris

Kris

Don't just have minutes in the day; have moments in time.
  • From: Wilmington, DE
  • Registered: Sun, 31 Oct 2010
  • Posts: 65

Re: Good News

Hi Kris,
Thanks for your kind words. My daughter just told me about a 31 year old young lady that had a tumor in her liver (stage 4 breat cancer). No drugs could help her. It is so sad. I am thankful for every day-but I still cry every day. I HATE not being in control. Life is not fair. Believe me, I am thankful the tumor is stable. Sincerely, Johanna
PS Gavin and CM thanks for your support also!

  • From: Hooper, Utah
  • Registered: Mon, 12 Sep 2011
  • Posts: 199

Re: Good News

Johanna, I appreciate you sharing what is going on. I very well relate to the drawn out "not knowing" part of things. It is the worst. I can relate to the crying and feeling that things are out of my control. Johanna, I can promise that if you hang out here on this board, your feelings of no control can begin to change. As many out west here say, "Grab the bull by the horns". Then, you can tell the bull where to go........you are in charge.

All my love and prayers are with you that you will continue to hold your own and some day the news will be even better.

-Byron

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Good News

Byron, I had to chuckle this morning as we have you, mustangmort and now also have Pepehorse so maybe we should call this the CC Ranch!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Hooper, Utah
  • Registered: Mon, 12 Sep 2011
  • Posts: 199

Re: Good News

Well, I changed my Avatar to match.  That's me on my "mustang", Kit. (not that you can tell very much with the tiny pictures.)

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 777

Re: Good News

Johanna: you are not alone with the "being out of control" feelings. I still cry every day, also. Even though my news is so hopeful.
A little about my story: My tumor is at the top of my liver. It has taken out 2 of the 3 hepatic arteries and was wrapped around my vena cava. So although it was only 5.4x4.4cm to start with, it was nonresectable. I started chemo in June. July 25 the tumor had shrunk to 4.4x3.3. By Aug. 25 it had shrunk to 4.0x2.4cm. So it is definitely going the right way and quickly. My surgeon and I are meeting on Oct. 31 (next scan Oct. 26) to discuss my options and whether they are something to think about immediately or if I still have some chemo to deal with. I hope it's soon as the oxaliplatin is really hard on the body. And I hope to hear that the tumor has shrunk from around the vena cava. That's the scariest part of this whole journey.
Anyway, I've been getting good news a lot lately, but it doesn't stop me from crying and worrying.
I'm just hoping we can get something decided soon so I can get started on finding a job. Unemployment won't last much longer and disability (which I have been approved for) won't cover 1/2 the bills. So I need some schedule decided on so I can do SOMETHING!
Kris

Kris

Don't just have minutes in the day; have moments in time.
  • From: Wilmington, DE
  • Registered: Sun, 31 Oct 2010
  • Posts: 65

Re: Good News

Hello Byron and Kris,
Thanks for your posts, it keeps me going. I am so mad at this cancer because I had to give up my job as a dean at a university because of the stress it was causing. I am lucky that my boss created a new job for me. I will retire this June, no matter what. I hope I feel good enough to do some traveling.
Kris-my tumor is in the porta hepatis and has not shrunk. 7 surgeons said no to surgery for me since the possibility of bleeding would be a problem. I am keeping on going to continue this fight against CC. Right now I am having trouble sleeping and was put on restoril.
Thanks for writing back-it means alot to me. Johanna
PS Because I am a nurse, I always said good health was so much more important than money and material items. Money can not buy you good health (just look at the former CEO of Apple).