Topic: Clean Scans!

Well all,

I am doing a happy, happy dance today. We got CT scan, labs and chest x-ray today. ALL was clear, NO evidence of disease. So we are done with chemo. I wanted to break down and cry for just a moment there when he told us. I had myself all worked up that it was going to be bad. Scan anxiety at its best.

But, of course, there was a but. Due to the size (3 cm) and location of the tumor (both bile ducts and into artery and vein) plus the positive sentinel lymph node then the fact that it was moderately differentiated, they want to go ahead with radiation.....and I am going to call it chemoradiation for lack of a better word. They want to do 5 weeks of 5 days a week of IMRT and do a continuous infusion of FU5 at the same time. His reasoning is that he has three risk factors for a return and this would give him an even better chance to beat it. We asked the "what if" we do nothing and his concern was the virulence when/if it returns and then we would be in a palliative mode versus the curative we are now. They are wanting to do it up there at Virginia Mason as they do something a little different with their radiation therapy....they give an IV drug the first treatment then he does injections three times a week while doing the radiation. I didn't ask what those were but it's on my email list of questions before we make the decision.

It's a lot to take in especially the logistics of traveling two hours back and forth to Seattle for 5 weeks. And it means another surgery for port placement then the return of the worries about sepsis. But you know what right now, I am just reveling in the fact that the scans were clean.

Also another positive note, in anticipation of the cc registry, I requested Mark's medical records on Wednesday....today in the mail was 10 (yes, 10) CD's with all his imaging on them. I was impressed as heck. Now just waiting for all the actual paper records to come but it is interesting to see the actual images of before and after.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Clean Scans!

Kris, doing a happy scan dance here for you and Mark. I'm getting ready to do a very similar IMRT schedule, with 5FU. I'll be going in on Monday, getting all of the usual chemo I'm getting now except the gemcitibine (my dress say it is too good a radioactive agent and makes the radiation too strong), which is why instead of it, I'll get the 5FU. I'll get the 5FU hooked into my port and wear the pump home and wear it until Friday, and they will disconnect it for the weekend.  I hope at the end, I'll have clean scans. 

Having to drive 2 hours to the hospital every day sucks. I'm sorry you have to do that.


Lisa

Impatient patient.

Re: Clean Scans!

Kris...I am dancing right along with you.  Fantastic news. 
It appears that we witness an increase in combined radiation/chemotherapy treatments because certain chemotherapy agents help sensitize radiation so that it works better.  It also provides a systemic effect in addition to the local effect of the radiation with the hope of preventing or delaying metastasis.

Thanks for preparing for the CC registry.  We expect to launch it within the next few weeks.  What an undertaking this has been! But it was worth every minute.

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

Re: Clean Scans!

Great news!

Re: Clean Scans!

Kris, I am doing cart wheels! No easy feat! It sounds really good. To do or not to do as you know is your and Mark's  decision. In the meantime ENJOY!

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.

Re: Clean Scans!

Kris, joining in with you on the happy dancing front! Great news and thanks for sharing that with us all! I hope that the IMRT goes well for Mark, my fingers are crossed for that as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Clean Scans!

Kris. Yay u guys have earned the happy dance and keep dancing. wink best wishes and blessings to you guys!

Hope, love, strength...2013 and for the years to come, Porter.

Re: Clean Scans!

Porter -
So glad to see your smiling face online. I hope that everything went well and you are doing well. You have been in my thoughts all week.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Clean Scans!

Kris,

What great news.  So happy for you and Mark.  Hoping things continue to go well and you will have more good news to share.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Clean Scans!

Kris,

So very happy to hear your great news!!!  Here's to a great 2013 and good health going forward!!

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Clean Scans!

Fantastic news!!!!
Hugs,
Lisa

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

Re: Clean Scans!

Wonderful to hear this, Kris! Its a good time to pause and celebrate as Mark prepares for the next phase of treatment (chemo radiation). His Dr sounds aggressive so that's good. Wondering if you can find a charity (Lije Rinald McDonald House but fir adults) so you can stay in the city during the week for Marks radiation tx?
Thanks for sharing Marks journey, your knowledge as a halth care provider and helping pave the way for others to use the new patient registry that will be open soon by the CC foundation. This is a critical to give researchers and doctors a database to use. I'm Wondering if people can register under a pseudonym to keep med info private? I'll ask...
Cheers,
Willow

Willow

Re: Clean Scans!

Well, now that the Seahawks have won, life is so much better. Just kidding but it really made Mark's weekend.

After much talking we are definitely going ahead with the chemoradiation, not sure it was really so much a decision but wrapping our heads around the logistics and the fact that we weren't done as we hoped. I fired out a couple emails today to docs to try to get them all coordinated for this. I emailed our Infectious Disease doctor since I want him on board before the port is placed and to work with us on preventing sepsis this time....Mark had three hospitalizations this summer after the port was placed. I also emailed his ONC to find out about the drugs on top of the 5FU that he will get. I suspect it will be Interfieron and Leucovorin. Once I find out for sure I am going to see if we can coordinate getting it locally which will allow both of us to continue to work as our local radiation center is only about 15 minutes away. If not then he will spend the week days with his sister who is only a ferry ride away from Seattle and then home on weekends. He won't be able to work which bums him out.

Looking forward to getting forward with this since it means closer to the end.

BTW, I also really got to look at radiology reports and the actual films....it was really interesting to see those. But I did get a little frustrated because there was stuff on the reports that they didn't tell us. Or told us well after the fact was going on. Lesson learned, I will ask for copies as soon as available to make sure they don't do that any more.

Thanks for all the positive thoughts.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Clean Scans!

Great news Kris :-)

X

Clare

In the stars now . . . .

Re: Clean Scans!

Kris,

Glad the decision has been made and you can now move forward.  Hope things all work out for the best for you and Mark. 

Wishing you both lots of luck & love on this next phase.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Clean Scans!

Well, I put the cart before the horse with the chemoradiation. We will not be able to do it closer to home as I had so hoped. Mark will have to go to Seattle for 25 treatments. It's okay though he will stay with his sister in Bremerton during the week and will take the ferry across to get treatments. I spoke with our ONC today and he says they have really tried in the past to do it down here but the can not get local clinic to work with them to get the radiation field the way he wants it. So a little bummed about that.

I did ask him why it was so important to do this and he said that he is following his treatment guidelines for Pancreatic cancer which are different from "suggested" protocols. He believes that chemo first as a systemic therapy to kill any "floating" cells that might lead to mets. Kind of like systemic lawn weed killer treating the entire lawn to off the dandelions before they seed and sprout up somewhere else. Then the chemoradiation to hit the spots where the biggest risk is at. He said that was like spot weed killer that's just for a couple of dandelions growing.

He has done the same thing with pancreatic cancer and has a greater than 50% five year survival rate for this. And as a nurse I know that is a wonderful number. He does admit that he does not have a big enough CC group yet to see how well it is working but he had hope.

Okay so after that I really buy into going to Seattle. And as a friend of mine pointed out since he will be out of the house during the week, I will get a little break to let someone else watch and care for him. Sounds a little better. smile

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.