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Big day today!

avargov
Posts: 19
Joined: Feb 2018

As you may know, I finished my first round of chemo of April 26th.  That was a long 12 weeks.  3 weeks out, I am feeling pretty great!  I would say about 90% of where I was before all this started. 

 

Had blood work last Tuesday, scans last Friday ( which happened to be my 47th birthday), and now today I go see my Onc to find out how everything went, and what we will do going forward.

 

I find myself being mildly anxious this morning (proved by waking up at 0230 and can't go back to sleep).  I am hoping and praying that the tumors shrank enough that I can get a long holiday from the chemo.  I have told my wife that I am unsure if I want to go through that again.  Not that is was terrible, it could have been far worse, but how long should we continue to fight if it's just going to keep coming back?

 

Anyway, I will post the news once I get it later this morning.  Please pray that all is going well.

 

And, as always, thank you all for your support!!!

 

Alan

JanJan63's picture
JanJan63
Posts: 2026
Joined: Sep 2014

I'll be looking forward to hearing your results. Good luck!!!

Jan

Joan M's picture
Joan M
Posts: 275
Joined: Oct 2016

It depends on what stage you are at and if the chemo worked for you. Some people have surgery and then "mop up chemo" and then don't need it anymore. 

But, if you were stage 4, (as I am) they will probably want you to go on a maintainecne chemo to keep the tumors from growing.  They will change the chemo when one stops working, and of course, you can take breaks when you need or want to.   I was on Folfox, then on Xeloda and Avastin for 13 months.  I had a long break from chemo due to gall bladder problems and related surgeries.  My colon tumor grew back because of the long break and so I needed surgery for that.  I will start back on chemo the end of May, but will be on a clinical trial in Houston or so my doctor there promised. 

Unless you are considered "cured" by your doctors, the cancer will most definitely grow back without chemo.  I think after you've been NED for a number of years, they consider discontinue chemo.  There are people on this forum who were stage 4 and have been NED for over 5 Years.   

Good luck!

Joan 

Annabelle41415's picture
Annabelle41415
Posts: 5667
Joined: Feb 2009

It's good that you've done so good so far.  It's hard for test results upcoming.  I'm wishing you well and hoping that all your upcoming tests come out awesome.

Kim

darcher's picture
darcher
Posts: 255
Joined: Jun 2017

   I don't know if what you've done is the pre-surgery chemo or not but this illness is one hellava rollercoaster.  I'm sure you've heard that already.  I've done all 3 phases from the iniital chemo and radiation, yeah I got the bonus round of being popped in a microwave which left me baren now.  Then the surgery and just finished the 4 months of mop up chemo a couple weeks back.  I still feel like crap.   Here it is 2:30+ am and I'm awake.  Never went to sleep and my test isn't for a few more weeks so I know how you're feeling.  The weird thing about this is the post treatment symptoms aren't that bad in of themselves. It's the knowledge of what's caused it that puts us into a mental paralysis.  Damn, I am so sick and tired of being sick and tired so I know the motivations for wondering, "should I go on..."   Anyhow, hope things went well and you're getting better.  I'm heading out for a walk at 3:00 am.  2 miles or so and some tea spiked with whiskey might calm me down. 

avargov
Posts: 19
Joined: Feb 2018

Well, here goes.  Only 2 lesions are visible on my liver, and they are 2cm and 1.9 cm in size.  Much, much smaller than when we started this business in October.  CEA down to a respectable 12.2.  Lungs were completely clear, colon was clear, tumors in omentum are no longer visible.  So basically, the 14 tumors we started with are now down to 2.  Good news I suppose.  Dr. has set a consult with the Cyberknife fellows here in town.  He thinks we should be able to blast away those 2 on the liver.  We talked about liver surgery to remove the 2 lesions, but he advised that I would have to go out of town for that, as he doesn't trust a surgeon in Vegas to handle that.  No chemo for a while.  I am on the fabled "chemo holiday', which was the biggest thing I was hoping for.  He also advised that I have a colonoscopy as soon as possible, and they have a geneticist that he wants me to hang out with for a bit to get a clearer picture of risk factors for both me and my family.  

 

So I guess the bottom line is "GOOD NEWS", and it looks like I may be around for a while longer.  Hoorah!

 

Alan

Ugur
Posts: 62
Joined: Mar 2018

I'm very happy to see some good news around. It gives me courage to stay strong. I hope cyberknife will do the best results and you won't have to deal with chemo ever again.

Congrats,
Ugur

Trubrit's picture
Trubrit
Posts: 4400
Joined: Jan 2013

Ask him about ablation, also. I had thermal ablation on my liver tumour, up in Reno. Great surgeon, Dr. Galanopolus. Four years NED since the surgery, so you can say, success. 

Good luck moving forward and with your colonoscopy. 

Tru

avargov
Posts: 19
Joined: Feb 2018

Had to cancel the colonoscopy because insurance denied it, and I can't afford to pay it all out of pocket.  I mean, I guess we could, but it would put a huge dent in our reserves.  Did go to the Cyberknife cosultation today.  They think I am a great candidate.  But, now we wait to see if insurance will cover it.  I hate dealing with the business offices and insurance.  Makes what should be a rather easy treatment become very convoluted.  Alas, we wait and see.  My road trip starts Saturday, so I will gone for at least 10 days, perhaps they can get it all sorted by then.

We talked about a few different options during the visit with my Onc, and he and I agreed that Cyberknife was probably the best solution for the two lesions.  One, because it is local.  And 2 because they are so small.  I hope we are making the right decision.

As always, thank you all for your support and guidance!!!!

 

Alan

Trubrit's picture
Trubrit
Posts: 4400
Joined: Jan 2013

How can insurance refuse to cover a colonoscopy for a Colorectal Cancer patient?  I HATE the control insurance has. 

My Onvcologist took on our insurance company and fought for me, when they refused to cover a PET scan. 

I would try and push the issue. If your Onc wants a Colonoscopy, you should get a colonoscopy. 

Enjoy your 10 day road trip. Try (as best you can) to leave all the bad stuff behind. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 5667
Joined: Feb 2009

That is the time you really need to get on the phone.  My insurance wouldn't pay for something that was needed for me- nothing to do with colorcectal but another situation and it took me many phone calls and time to get them to approve it.  I'd recommend you get with the insurance company surpervisor to look into this.  This is something that sould be mandatory.  I'm going to tell you that my insurance would only cover a colonoscopy 1 every 10 years and made me responsible for the others so this might be the same situation.  Wishing you luck.

Kim

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