1 Topic by tiff1496 (edited by tiff1496 Tue, 13 Mar 2012 08:57:52)

  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Topic: Nice PET ;) Updated 3-13, please read.

So, it looks like my PET scan was much better. the left lobe intake is less confluent and overall decreased in intendity. Current max SUV is 7-8, previous was 12-13

Right lobe previous SUV was 6-7 now is 3-4.

No other foci of abnormal F-18 uptake.

Specifically, there is no evidenace of abdominal aoric aneurysm. No suspicious  pulmonary nodules are appreciated.

Impression:
Locally positive response to therary without PET/CT evidence of nodal or distant metastases.

In other words....what does all of this mean??

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • From: Eastern Shore of Maryland
  • Registered: Fri, 15 Oct 2010
  • Posts: 380

Re: Nice PET ;) Updated 3-13, please read.

Kim or Percy here can help with interpretation.  Sounds like general improvement with nothing getting worse.  I would overnight the disc to Dr Kato.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm
  • eli
  • eli
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  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
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Re: Nice PET ;) Updated 3-13, please read.

Cancer cells consume sugar (glucose) at a much higher rate than normal cells. PET contrast agent is kind of like glucose. It has similar molecular structure.

When you get an injection of PET contrast agent, cancer cells consume the agent faster than normal cells.

SUV = Standard Uptake Value. It measures the uptake of the contrast agent by the tumors.

High SUV: bad
Low SUV: good

Your SUV went down. This is GOOD! Lower SUV is the reason they wrote "locally positive response to therapy".

>>> "No other foci of abnormal F-18 uptake."

They didn't see any other places where the contrast agent was consumed at abnormally high rate. This is GOOD! That's why they wrote: "no PET/CT evidence of nodal or distant metastases".

DISCLAIMER: I'm not a doctor.

4 Reply by PCL1029 (edited by PCL1029 Mon, 12 Mar 2012 18:59:54)

  • Registered: Fri, 15 Oct 2010
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Re: Nice PET ;) Updated 3-13, please read.

Hi,Tiffany,

This a a good report,like Jim said, you should send this to Dr. Keto or Dr. Chapman for the possibility of surgery as you had mention before that D r. Jalve you may be a candidate for surgery if the tumors shrunk.

Eli's comment explains very well about your PET scan report.
If base on the SUVmax value in general for the liver, you are in very good shape especially the right lobe. Please also consult an interventional radiologist for the possibility of radioembolization .you may be a good candidate for it.
Please ask dr. Jalve FIRST about his  assessment of  the possibility of surgery and radioembolization  to show your respect about his opinion ,then  do the above 2nd and 3rd  surgical consultation. You do want to keep a good rapport with him ; for me a good rapport with other medical professionals can sometimes save your life. Good luck
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Nice PET ;) Updated 3-13, please read.

Ok, I just sent Dr. Javle an email, asking his team to look at me again for surgery. Maybe I will hear back from them soon. I also asked about the radioembolization.

Thank you everyone for your support! We are thankful that things are kinda looking up.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 773

Re: Nice PET ;) Updated 3-13, please read.

Tiff: What a wonderful result!! Shrinkage is good. And I'm not a Dr. either, but I've had enough explained to understand that what you received was a pretty darned good report. My surgeon would have been beaming. My OTHER oncologist would have been beaming. And Dr. Kemeny MIGHT possibly have cracked a grin. at news like this!!
Happy dancing (in my head) going on for you tonight!!

Kris

Don't just have minutes in the day; have moments in time.
  • Lainy
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Re: Nice PET ;) Updated 3-13, please read.

Great news Tiff! You know how we LOVE that shrink word! Let's see what Dr. Javle says, wishing you the very best news to come.

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.
  • Grover
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  • From: Indiana
  • Registered: Mon, 31 Oct 2011
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Re: Nice PET ;) Updated 3-13, please read.

Good news, tiff, happy for you and wish's for continued improvements in your conditions.

Grover

  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Nice PET ;) Updated 3-13, please read.

OK Guys...I emailed Dr. Javle and he replied within the hour (what a great guy). Here is the emails-

Me- Dr Javle,
When we seen you last month, we didn't talk much about surgery. I had a PET scan last Friday and the results looked good to me!
Here is some of the report:

the left lobe intake is less confluent and overall decreased in intendity. Current max SUV is 7-8, previous was 12-13

Right lobe previous SUV was 6-7 now is 3-4.

No other foci of abnormal F-18 uptake.

Specifically, there is no evidenace of abdominal aoric aneurysm. No suspicious  pulmonary nodules are appreciated.

Impression:
Locally positive response to therary without PET/CT evidence of nodal or distant metastases.


With this being said, I would really like for you and your team to look over my case again for surgery. My goal is to have this cancer removed from my body. smile Also, I had a small reaction to the Cisplatin today: After about 10 minutes my face got blood red, my temp went up, my heart rate was around 130, my bp went up, and I was having shortness of breath. They got it under control, and I got to finish the Cisplatin with it going in at a lower speed.
I also wanted to get you're thoughts on radioembolization, is this something I need to look into? I want to be as proactive as possible with this cancer. I'm worried that the Gemzar and Cisplatin will quit working, and my tumors will grow.

Thanks for your time and support

Dr. Javle- Hi Tiffany, Good news, I am very happy to hear of this. Regarding the cisplatin-this is not uncommon, but we will need steroids, benadryl and pepcid-like for taxol. Please discuss with Dr Shah. I think in future we should give as a slow infusion over 4 hours. The trouble is the amount of tumor in the liver. In your case, I feel we are going to see continued response for a long time. But surgery if less than curative can make things worse.

I do think in future, we will do PET scans whenever you come down. I definitely think Y90 should be considered. But we should get as much mileage from current therapy as possible. I do think its going to work for a while.

With all this being said. I got an email that Dr. Kato is looking at my scans today, and that I will hear today or tomorrow from him. Talk about stress! What if Dr. Kato says yes, and Dr. Javle said no to surgery. Advice. LOL

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • Lainy
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Re: Nice PET ;) Updated 3-13, please read.

Tiff, I can see why you are all so in love with Dr. Javle. What a compassionate man. I know it's hard to be patient but you know too it is all a waiting game. Soon your questions will all be answered but it appears you are traveling a good path!

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: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Nice PET ;) Updated 3-13, please read.

Yes Lainy he is an awesome doctor! And this email was last night at 8pm!! Praying that God sends me on the right path.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Nice PET ;) Updated 3-13, please read.

Tiff.... I believe that physicians appreciate well informed patients. That is why I believe you are doing everything right by consulting with numerous specialists however; one must expect to encounter a difference of opinions.  And, that is quite alright and should not hold you back from gathering additional information. 
Fingers are crossed.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Nice PET ;) Updated 3-13, please read.

Percy- I did, did you get my reply this am?

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • Registered: Thu, 09 Sep 2010
  • Posts: 533

Re: Nice PET ;) Updated 3-13, please read.

Tiffany-Congrats, sounds like you are heading in the right direction. I suggest you start throwing Dr. Kato or Dr. Chapman name around to your doctors. These 2 doctors are probably the top in treating CC patients and have had SUCCESS in treating our cancer, and have said yes when others said no. I would get your doctors opinion on there work, I am sure they know of them. Dr. Chapman of course in my "hero" so if you need another opinion please contact me for info/number. I pray Dr. Kato has great plans for you.
Lots of prayers-Cathy

  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Nice PET ;) Updated 3-13, please read.

Oh its no problem Percy.  smile
Thanks Jathy

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • Registered: Mon, 27 Jun 2011
  • Posts: 435

Re: Nice PET ;) Updated 3-13, please read.

Tiffany,

Sounds like good news!  Keep us posted on the treatment plan.

Best wishes,

Susie

  • Registered: Sun, 14 Aug 2011
  • Posts: 178

Re: Nice PET ;) Updated 3-13, please read.

Tiffany,.

I am so glad to hear that your tumors have shrunk and I hope that continues.  You are doing all the right things just as the others have said.  Stay strong and keep fighting until the battle is won.  Hugs,  PeggyP

  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Nice PET ;) Updated 3-13, please read.

I was going to update to let y'all know Dr. Kato said no to surgery right now. I'm ok with that, and will keep doing the chemo. Dr. Kato wants my right lobe to be clear for surgery, so I will keep him updated.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website