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Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/7/2008 8:24 PM (GMT -7)   
Connie, I will be thinking of you tomorrow and praying for all your tests to come out good.

Hugs........... smurf
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/8/2008 4:42 PM (GMT -7)   

Thanks so much, Pink.  It's been a long day!   rolleyes   I just got home an hour or so ago, absolutely starving. 

I will get the results tomorrow morning when I return to Mayo for a consult with my hepatologist.

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/8/2008 5:22 PM (GMT -7)   
Hi Connie, My thoughts and prayers are always with you, but I'll say a special prayer tonight that all your tests results are good and if you decide to do treatment you are one of the lucky ones that doesn't have severe side effects.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/8/2008 8:30 PM (GMT -7)   

Thanks, Butterfly.  Unfortunately, I have not heard or read anything from anyone who has been on the combo treatment that didn't have very bad side effects.  At this moment, I am inclined to not go forward with it.  I'll post tomorrow night, after I get the test results from today.

Hugs,

Connie


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 9/8/2008 9:18 PM (GMT -7)   
Hi Connie,

You know that my thoughts and prayers are with you. We all know that you will make the best decision. You're not one to be misled by the system.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/8/2008 10:18 PM (GMT -7)   
Hi Connie, that made two of us starving tonight. This evening I was so starving .......I went to Pollo Loco....not only did I buy me dinner tonight .......I also bought me lunch for tomorrow at work...........shocked


I'll be waiting for your update.

Thoughts and prayers... smurf
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/9/2008 2:46 AM (GMT -7)   
Connie

Please keep us updated on your tests results. You know my thoughts and prayers are with you.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2008 11:55 AM (GMT -7)   

Thank you all so much!  John, do you have your test results yet?

As for me, there were no changes in the CT scan; i.e., no new lesions, etc.  My blood work was also good.  Re: Liver enzymes, only the AST was a little high...but just 3 points above the high end of normal.  My eosinophils were high, but that's just an indication of inflammation from the hep C.

I asked about grade and stage.  The hepatologist said I am stage 3, grade 3-4, per biopsy done in May '07.  My blood work does not reflect that, which only goes to show that it's not always a good indicator of what's going on inside.

For now, though, she felt I am doing well enough that I won't need another CT and blood work for 4-6 mos.

She said they were amazed at how well I had done, through the liver cancer, post-surgical hernias, etc.  I told her I had great doctors, but she said to give myself credit, too, for doing all the right things.

I did tell the doctor that I really do not want treatment at this time, just when I'm starting to feel decent.  She also felt I should I "take a break" after all I've been through.  She did say that there is a new drug to prevent recurrence of certain cancers, and if I had any suspicious lesions in the future, she would put me on that, along with another drug.  She also will refer me for any new hep C treatments that might come along.

I had gained 4 lbs. since the end of July, so I need to cut down the amount of food I'm eating, as I'm eating all the right things...just too much of them!  rolleyes

Again, thanks for the prayers and good thoughts.  They seem to have helped!  :-)

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/9/2008 6:13 PM (GMT -7)   
Hi Connie, That is such great news. Your doctor is right. You should give yourself some credit. You are a tough cookie that does not give up. I have so much admiration for you. I understand your decision not to do treatment at this time. You do need a break after all that you have been through. To tell you the truth, I was so afraid for my husband to start treatment again due to the previous experiences we had with it. My husband got down right scary at times. He could be very irrational at times. It lasted several months after he completed treatment. The last time he tried treatment he got very ill, due to an insurance mix up. The insurance wouldn't give him his refills which caused a lapse in treatment. When he started up again about a week later he got very ill and had to stop. After that he lost his job and was without insurance and could not get treatment.

I am so happy to hear that you are doing so well.
Butterflythree
 
There is always hope!


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 9/9/2008 8:18 PM (GMT -7)   
Hi Connie,

I'm glad that you're doing well and that you get a break from constant treatments. I hope that you are planning some fun to celebrate.

The only news on my PET Scan (to see if the cancer is spreading) is-- wait for it -- no news. At the time of the scan, I had told both the radiologist and the oncologist that I was convinced that they had not done the full-body scan. The radiologist didn't address it and the oncologist assured me that they never do a partial in cases like this. Well -- here it comes, wait for it again -- they only did mid-chest up. So we get to do it again. I'm sure that Blue Cross will be amused. It's a good thing that I love to fast.

Anyway, I am happy for you!

Goodnight and be well, John
I'd give anything for a good night's sleep.
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2008 8:57 PM (GMT -7)   

Thanks, Butterfly and John.  :-)

John, it would be best if they did a full body MRI with gadolinium contrast.  I've had several of those.  I was told that the gadolinium makes cancer "light up like a Christmas tree."  However, I spoke with a lady yesterday at Mayo, while we were both waiting for our CT scans.  She had just been diagnosed with neck cancer per needle aspiration.  I could see the lump on her neck.  She was scared to death.  She was having a CT from the chest up, but said her doctor had mentioned that they might also do a PET scan.

The reason for these partials is that if a throat/neck cancer metastasizes, it is most likely to go to the lungs, brain, and lymph nodes.  Metastasis to another site would be unusual, except at end-stage.  In the case of my liver cancer, they did a lot of pelvis through head scans, but I also had 4-5 MRIs with gadolinium in the past 3 years.  That is the proposed future plan...every 4-6 mos., a CT and/or an MRI.

My thoughts and prayers are with you, John.

Hugs,

Connie


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 9/10/2008 10:56 AM (GMT -7)   
Connie,

Yes, you deserve a break & more! I congratulate you for deciding against treatment at this time. From one who's done it twice, you must be as strong and healthy as possible before beginning treatment, its wicked. I am waiting for new treatments as well.

Best,
Cary

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/10/2008 11:04 AM (GMT -7)   
Connie

Such great news that you are doing so well. I understand completely your decision on waiting on further treatment at this time. You have been through so much there is no reason to push it at this point. Hope you got some much needed rest/

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/10/2008 2:45 PM (GMT -7)   

Thanks, Cary and Lucy.  I can literally feel my body saying a loud NO to any treatment at this time.  It has only been 3 months since the last hernia repair and I feel like I'm still healing from that internally.  Mentally, I am also thinking that it would be rather stupid to pour a bunch of harsh chemicals into my remaining liver when I am doing so well now.  skull   I can't imagine that would be a good thing.

I took today to sleep late and do nothing much.  Tomorrow I have to grocery shop and Fri. I'm getting my hair cut. 

Hugs for all,

Connie

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