Author Topic: OK here we go - Novalis LINAC 3 FSR starts tomorrow  (Read 15419 times)

theshawn65

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OK here we go - Novalis LINAC 3 FSR starts tomorrow
« on: October 22, 2013, 03:31:03 pm »
OK, so it's on tomorrow at 12:30pm, Thursday at 12 and Friday at 10am. (Prayers appreciated!)

I will post more info daily as I relay my experiences and gather more info. I don't have full 3D size info but believe I will acquire that tomorrow. AN was at 2.2-2.4cm at largest point and varied 0.1 cm between 3 doctors (including the two below) who looked at my first MRI scans.

Treatment at Precision Radiotherapy in West Chester, OH (just north of Cincinnati). Dr. John Breneman and Dr. Ron Warnick (Mayfield Clinic) partnering on my treatment and mapping. The dosage is going to be 6 Gy per day.

Starting to get more nervous than I thought as it approaches! :) Taking a 6 day regiment of steroids starting tomorrow morning (methylprednisolone). 6,5,4,3,2,1 daily dosage.

If anyone has questions just fire away, I'm not thinned skinned nor is any question off limits. I will be posting costs as well afterward. So thankful for this place during the last few months as I researched options and made decisions.

Anyway....I'll be back!
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

kejac

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #1 on: October 22, 2013, 05:34:54 pm »
Good Luck!

I want to say try not to be nervous. You've done your research, consulted with doctors and made an educated decision but, easier said than done!

I'm looking forward to your detailed reports on each days events.

Oh and thanks for responding to my pm.
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #2 on: October 23, 2013, 12:25:43 pm »
Thanks kejac.

OK then, so first treatment is over with and I'm back at work. No real issues, treatment seemed pretty short, maybe 25 minutes in the mask. Mask isn't bad, it's not what I would call "fun" but it's really not bad either if you just close your eyes, relax and focus on breathing slow and steady. Felt weird that something was actually happening even though you cannot feel anything. I may be hearing a bit higher level of tinnitus in my right ear but I'm not sure if it's real or stress induced, otherwise my head feels a bit tired but nothing major or anything that would cause me to not do anything I normally do.

Started my steroid prescription this morning with two and just took another at 1:15 and don't feel any different so far. Found out my Friday appt was moved to 8:45am and I'll meet with my two Dr.'s afterward so I should have more info then.

So, so far it's "move along nothing to see here" at the moment. I'll post updates as things come up.

God Bless

2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

kejac

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #3 on: October 23, 2013, 06:37:31 pm »
Its the beginning of the end for that little guy.

One down, two to go.
Good update, sounds like everything went well.

Good luck tomorrow, keep us posted.

Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

mesafinn

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #4 on: October 23, 2013, 07:48:06 pm »
My Thoughts and Prayers are with you!   Be confident you're in good hands and focus on your breathing.....you're on your way to recovery and possibility!

Stay very well.

P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

EJ from down under

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #5 on: October 24, 2013, 12:07:49 am »
 :) Thank you for your post. I do hope your treatment goes well. Please do keep posting regularly so we can track your progress. I am waiting for Linac treatment myself and your courage and preparation to share you experiences are very encouraging.

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #6 on: October 24, 2013, 01:05:08 pm »
OK so round two started right at 12pm today, was walking out of the treatment facility at 12:22 and actually felt better today than yesterday. I think the stress of the first day influenced that and knowing what to expect going into today helped calm me down even more. The 2nd day the mask is even less of an issue and for people who like sleeping with heavy blankets because they like the feeling of weight on them, that's what the mask kind of feels like on your face. Sure it's a bit more pressure than that, but you can see out of it and breath just fine. I would advise using the leg triangle to put your legs over and the soft ring you can hold with your hands across your stomach, very comfortable. If the machine wasn't moving you around occasionally and noisy you could fall asleep imo lol. Yes, even with the mask on I could fall asleep I believe.

Drove to work, picked up lunch on the way back, no nausea or anything. Tinnitus is the same as yesterday, still seems just a tad higher than before treatment but well within being a non issue having learned to live with it. No issues with the steroids to this point and no side effects I can report.

Overall pretty darn good, actually was working and forgot I'd actually had treatment today for awhile.

Thanks for the well wishes, I'll report back tomorrow after my final zapping and discussion with doctors. God speed y'all.

PS- The machine I'm being treated with is the Novalis Shaped Beam BrainLAB http://www.precisionradiotherapy.com/fact_novalis.html. This facility also has the Varian TrueBeam and TomoTherapy Hi-Art Helical machines.
« Last Edit: October 24, 2013, 02:31:37 pm by theshawn65 »
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

kejac

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #7 on: October 24, 2013, 07:25:45 pm »
Anytime you can forget about your tumor or treatment for a little while is a good thing.

One more to go.

Thanks for the updates.
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #8 on: October 25, 2013, 01:52:16 pm »
Yes, forgetting is good and will hopefully get easier but in some respects I hope to never forget what it felt like dealing with it all even if treatment works and I'm fine for the next 30+ years.

Anyway, last zapping this morning, everything according to plan as the previous two days, no hiccups or side effects experienced as of yet outside of the slight increase in tinnitus volume. Steroids haven't caused any issues so far either.

Spoke with both the neurosurgeon (Dr Warnick) and radiation oncologist (Dr. Breneman) this morning before my final treatment. They said I'll have another imaging in 6 months otherwise just let them know if anything crops up. Dr. Warnick said a small percentage have some facial tingling or numbness after a couple months but it's not the norm as most don't experience anything.

Feeling normal other than a little tired otherwise and if this works will be thrilled I didn't choose surgery.

Found out the dimensions were 2.2 x 2.2 x 2.3cm which is quite symmetrical compared to some and no cysts of any kind. The volume was 4.72cm Which Dr. Warnick explained was more important than the actual dimensions because when they check it in 6 months the measurements could be exactly the same but the volume could actually be decreasing so if you just go by the dimensions you won't have the whole story.

After all insurance billings are complete I will post the cost structure of each process and final total cost, both gross and net to me.

I'll be back periodically to report on issues or non-issues until the 6 month checkup. Otherwise as of now I'm pleased with my decision to this point, knowing it's still early of course but with both Doc's reiterating a 90% success rate the percentages are in my favor. Pic of me in mask below.

God Bless,
Shawn



2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

kejac

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #9 on: October 26, 2013, 12:24:40 am »
Nice picture!
Congratulations on completing your sessions and wish you symptom free while that thing dies off.

Now we wait...

Thanks for letting us follow you through your treatment.
Anyone seeking the same type treatment will benefit from your postings.




Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #10 on: March 09, 2014, 09:13:18 pm »
OK, so I'll be approaching the 6 month date soon. I will be posting the cost structure of my treatment with all insurance cost sharing and ultimate costs should you not have insurance. Personally, the facility I chose for treatment (Mayfield Clinic/Precision Radiotherapy) could not have been better outside of Dr. Warnick having a bit of an elitist attitude sometimes common to doctors. Dr. Brenemans "bed side manner" was great and very calm and reassuring. All other people I dealt with were great as well.

Just a guess I would say the overall cost of my 3 fsr novalis treatment probably amounted to around 25-30k if you have no insurance, but, that includes pre treatment MRI's and meeting with 3 different doctors before deciding on my course of action.

Up to now I have not experienced anything out of the ordinary, post treatment I was a bit tired for a few days but the steroids did not cause any side effects and the radiation to this point has not caused any side effects outside of things I might attribute to normal AN life experiences of some rare very light facial tingling/numbness to this point. Tinnitus is pretty much the same as before now.

I will relay the outcome of future MRI outcomes as they happen. Basically zero change to my life's normal day to day operation as before I found out I had this stupid thing. Honestly, while I am pretty asymptomatic as far as AN tumors go (outside of tinnitus/hearing loss), I actually feel blessed knowing I have it. There is something about knowing this thing is there that helps me appreciate life more now. Considering how much worse others have it in life through out the planet, having an AN tumor isn't fun, but contextually is not as bad as I thought when I first saw the MRI image that scared the crap out of me.

I'll be in touch. God speed y'all.

2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #11 on: April 29, 2014, 09:17:20 am »
Update: Nothing major to report, the last month or so I've experienced a bit more frequent twitchy feeling in my right eye, not often maybe couple times a week but you can't see any twitching in the mirror even though if feels like it is. So it can't be or isn't that bad imo. Also last few weeks I've experienced some pain in my right ear, nothing major, a dull ache of sorts at times that is different from anything else I've experienced to date.

I'm hopeful this is the AN swelling a bit from treatment reaction that's causing it but my follow up MRI isn't until May 23 so I'll find out then and let ya'll know.

Outside of that it's been "move along nothing to see here". No change in my hearing from what I can tell by my own testing methods of covering my left ear to check or calling the local weather line and putting the phone to my right ear. I still have serviceable hearing there I hope not to lose if this treatment works.

I will also be posting the cost structure in the next couple days for people to compare to their own or for those with higher deductibles or no insurance.

God speed y'all
« Last Edit: April 29, 2014, 09:25:45 pm by theshawn65 »
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

Jim Scott

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #12 on: April 29, 2014, 01:46:21 pm »
Thanks for the update!  It appears as if you're doing great.  This is very encouraging as well as informative for those considering radiation treatment.

Your diligence in posting and keeping the site updated is appreciated.  Please try to continue keeping us updated.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #13 on: May 05, 2014, 10:49:26 am »
OK so here is my AN medical expense breakdown, hope it helps someone else gain info on the costs of treatment here in Ohio at the Mayfield Clinic, UC and Precision Radiotherapy in West Chester, Ohio. My two Dr. were Dr. Ron Warnick and Dr. John Breneman partnering for my treatment. Maybe I should make this cost breakdown it's own thread? Hope it's not too hard to follow!

My AN Medical Expense breakdown:

*First MRI with and without contrast that discovered it:
$895.86 - paid out of pocket to PDI Dayton
$229.37 – paid out of pocket to Kettering Network radiologists

*First Office Appt, Surgeon Dr. Ravi N. Samy:
$412 – minusUnited Healthcare insurance adjustment of $73.09 =

$238.91 paid out of pocket or HSA

*First Office Appt, Surgeon Dr. Ronald Warnick:
$475 – minusUnited Healthcare insurance adj of $222.03 =

$252.97 paid out of pocket or HSA

*First Office Appt, Radiologist Dr. John C. Breneman:
$438 - minusUnited Healthcare insurance adj of $183.70 =

$254.30 paid out of pocket or HSA

At this point after meeting all three and praying about it plus discussing with wife I decided on 3 FSR radiosurgery.

*CT Scan at Precision Radiotherapy: 10/7/2013
$1836.00 – minus United Healthcare insurance adj of $1032.32 and Ins payment of $642.95 =

$160.73 paid out of pocket or HSA

*Dr. Breneman consult/special treatment:
$784 – minus United Healthcare insurance adj of $418.28 and Ins payment of $292.57 =

$73.15 paid out of pocket or HSA

*MRI at UC Health West Chester Hospital 10/7/2013:
$3475 + $268.95 (Other/Misc?) – minus UHC insurance adj of $1079.95 and Ins payment $1571.02 =

$1,092.98 paid out of pocket or HSA

$82.72 of misc bills paid out of pocket or HSA


*UC Health: 10/8/2013
$470.00 Trtmnt planning Complex
$312.00 Special Treatment Proceedure
Total $782.00 – minus UHC insurance adj of $403.82 and Ins payment of $302.82

$75.63 paid out of pocket or HSA

*UC Health 10/11/2013
$680.00 Therapeutic Rad simulation aided field setting 3D
$1472.00 Treat Devices, design & contr; complex
$736.00 Basic Rad Dosimetry Calculation
Total $2,888.00 minus UHC insurance adj of $1490.52 and Ins payment of $1117.98 =

$279.50 paid out of pocket or HSA

*UC Health 10/25/2013
$1973.00 one or more lesions, entire course no to exceed 5 fractions
- minus UHC insurance adj of $1019.22 and Ins payment of $763.02 =

$190.75 paid out of pocket or HSA

*Precision Radiotherapy 10/11/2013
$1336.00 3-D radiotherapy plan including dose-volume hisograms
$2192.00 Treat devices, design & constr;complex
$920.00 Basic Rad dosimetry calculation
Total $4448.00 minus UHC insurance adj of $2372.28 and Ins payment of $1660.58 =

$415.14 paid out of pocket or HSA

*Precision Radiotherapy 3 FSR sessions:

$4168.00 stereo bod, per frac 1 or more lesions 10/23/2013
$4168.00 stereo bod, per frac 1 or more lesions 10/24/2013
$4168.00 stereo bod, per frac 1 or more lesions 10/25/2013
$ 180.00 continuing med rad physics consul 10/25/2013
Total $12674.00 – minus UHC insurance adj of $6765.22 and Ins payment of $4735.03 =

$1598.89 paid out of pocket or HSA


Total out of pocket/HSA expenses paid:

$5840.90


So, all in all not cheap if you have a high deductible plan like me, but not stupid expensive like I've seen some quoted around here. Adding up all expenses = approx $32500 with no adjustments or reductions of any kind. I believe those without insurance could get treatment for much less than $32k from these doctors imo.

I'll be back after my May 23rd follow up MRI to give updates as well. God speed ya'll.
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

theshawn65

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Re: OK here we go - Novalis LINAC 3 FSR starts tomorrow
« Reply #14 on: June 03, 2014, 09:04:00 pm »
OK, so a bit over 7 months since my 3 FSR LINAC treatments and had my follow up MRI May 24th. About 3 weeks before the MRI the pains I started to experience in my right ear morphed into some annoying headaches and the occasional pain in my ear that had me saying "Ouch!". As someone who rarely encounters headaches I don't deserve, this was highly annoying to me. I avoid medicines unless absolutely necessary so I broke down each day for two Advil for about 8-9 days either in the morning or at night (a few days both) which did help.

Since the MRI I've experienced less pain as the days went by and haven't had near the headaches or ear pain and no Advil for the last 4 days. An uncommon twitch by my right lower lip has occurred about 3 times the last couple weeks that I could actually see, but some mouth exercises for a few minutes and it went away. Tinnitus is about the same but I believe it's a bit higher and I do believe my hearing has lost a bit if I was a betting man. Otherwise no balance issues or facial weakness of any kind.

So finally I get to the MRI result! Good news the MRI shows quite a bit of necrosis but the tumor has swelled, which he believes is causing the new symptoms. Would be nice to know HOW quickly the tumor swelled (slowly over the 7 months or accelerated the last couple?) but I guess we'll never know. Dr. Warnick said the necrosis looked like what he'd expect from a successful treatment. The new symptoms did have him wanting me back in 3 months to make sure the tumor had plateaued and wasn't going to have me take any steroids now. He said if my headaches could be controlled with occasional doses of Advil no need to go there unless more symptoms developed or the MRI in 3 months showed more swelling.

Here's a small pic of the MRI slide that shows the tumor at what I believe looks like it's biggest point and you can see quite a bit of darkening, not just a big spot in the middle either. I need to find out what it swelled to though, can't believe I didn't ask. I will continue to post updates as new things happen or new info is gathered! God speed y'all ! If anyone has questions please fire away or message me.



2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013