ck pros and cons for 3 vs 5 sessions

[Louise]

I have a 4 mm an which has remained unchanged for 2 years.  I have been slowly losing hearing in that ear so am considering ck.  I have been given the option of 3 sessions of 7 Gy or 5 sessions of 5Gy.  There is also the option of one session.  I would like to hear from ck people who have opinions about the different number of sessions.  Thanks from Louise

[jb]

Hi Louise,
I had 5 days of 5 Gy for my 2 cm AN last summer and it had a very quick (6 weeks) and dramatic effect on the tumor.  I seem to be an oddball around this forum in getting that sort of quick response, though, and I suspect it's more about my particular AN biology than the dose itself.  I'm still dealing with some swelling at this point, so I was just revisiting this issue a little more.  Anyway, I came across a recent response from Dr. Medbery in a thread on the cyberknife support forum: http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=20200

Hope it's ok to "lift" it here:
I think the most common treatment regimen is 6 Gy x 3. That is calculated to be biologically equivalent to 12 Gy single fraction which is generally accepted as the optimal dose for single fraction treatment. 5 Gy x 5 is roughly equivalent to 15 Gy single fraction if you assume that AN's act more like malignant tumors. If you assume they act more like benign tissue, which is not entirely unreasonable, then 5x5 is roughly equivalent to 13 Gy single fraction. 15Gy single fraction has been shown to produce higher risk of hearing loss. So depending on assumptions, they may be just a tiny bit high or significantly higher than necessary on the dose.

Clinton A. Medbery, III, M.D.

Seems like another one of those "depends who you ask" questions, and nobody really knows for sure.  My radiation oncologist reported excellent control rates with the 5X5 protocol, though they certainly don't handle the same volume of AN treatments as the larger facilities.  Still, I'm sure any facility is going to need a pretty compelling reason to tweak a protocol they feel is working.

Not sure if it helps, but I thought it was an interesting explanation.  Good luck with your research and decision.
JB

[Anna7]

Hello JB,

I am the person who posted the question on the Cyberknife support forum asking about 3 vs 5 treatment sessions.  Glad to hear that you had such a great result.  After finally deciding to go with CK it was then confusing to hear about the different treatment protocols (ie: 3 vs 5 days; consecutive days vs. Tues & Thurs only).  After speaking to a number of physicians, I get the general sense that CK has a high success rate no matter which protocol one picks.

A few questions if you don't mind:

How is your hearing now as compared to before?
Was your treatment on consecutive days?
Did you require steroids post CK?
If on steroids, did the doctor wait until swelling occurred post-CK or start you on them pre-CK?

Thanks, Anna

[jb]

Anna,
I still consider my CK-ed AN a "work-in-progress", LOL!  It's not been very cooperative symptom-wise, but starting to settle down a little now I hope. 

I also had questions about the 3 vs 5 day protocol going into my CK.  I think you are correct to assume there will  be a high success rate with either one, so it does just seem to add confusion to be presented with these different scenarios.  I wasn't really given the choice (thank goodness), as my radiation oncologist recommended the 5X5 up front.  If I remember correctly, I think he said the 5X5 protocol evolved from some previous studies at Johns Hopkins, so I'm thinking that Georgetown (where I was treated) probably used the JH results as their baseline when starting up their CK AN treatments.  I'm sure the 3 day protocols have a lot of data to back them as well, so I think it's ultimately about finding an experienced radiation oncologist and trusting their judgment.

Regarding your questions...  I've lost some high-frequency hearing since CK, I think about 15-20dB at highest frequencies.  Low and mid frequencies are unchanged.  My speech discrimination score was about 60% pre-CK, dropped to about 40% shortly afterwards, but seems to be improving.  I can hear well enough with my AN ear again for a telephone conversation now.

My treatments were on consecutive days, M-F.  I was pretty tired by the end of it, so that Tue/Thur schedule might be nice!

Steroids have really been the one "sticking point" in this whole experience for me.  My docs did not prescribe pre-CK steroids.  I ended up starting on prednisone my third day of CK due to hearing changes, and I've been on-and-off prednisone many times over the last several months to try to deal with ongoing headaches and hearing loss.  I was finally switched to decadron last month (after a second MRI) which cleared up my headaches and improved my hearing in a couple of days.  I had obvious swelling on MRI in December, so I wish this whole issue had been taken more seriously then.  Hopefully it will turn out ok now with the decadron, but my experience with prednisone for swollen AN was not a good one! 

Hope this helps!
JB

[ppearl214]

Hello JB,

I am the person who posted the question on the Cyberknife support forum asking about 3 vs 5 treatment sessions.  Glad to hear that you had such a great result.  After finally deciding to go with CK it was then confusing to hear about the different treatment protocols (ie: 3 vs 5 days; consecutive days vs. Tues & Thurs only).  After speaking to a number of physicians, I get the general sense that CK has a high success rate no matter which protocol one picks.

A few questions if you don't mind:

How is your hearing now as compared to before?
Was your treatment on consecutive days?
Did you require steroids post CK?
If on steroids, did the doctor wait until swelling occurred post-CK or start you on them pre-CK?

Thanks, Anna

Hi anna,

gonna jump in on this as well, since I had 5 day CK on my AN (just 2 yrs ago this past week!)

How is your hearing now as compared to before?  They saved 100% of my hearing for what it was at time of treatment.  Last hearing test this past Feb and my radio-doc now has the hearing test results framed on his wall

Was your treatment on consecutive days?  5 consective, Monday through Friday

Did you require steroids post CK?  Not necessarily "require" but was given a short timeframe of Decadron (Decacrap as I lovingly call it) to help keep edema/swelling down immediately post CK.

If on steroids, did the doctor wait until swelling occurred post-CK or start you on them pre-CK?.  I stared Decacrap first day of treatment... for me, was not required pre-CK.

Hope that helps.
Phyl

[Anna7]

Thanks for the responses.
 
I'm sure you all are familiar with having had to consult with at least two different doctors for each procedure considered.  First for surgery, then others for gamma knife, and finally more for cyberknife (my future treatment of choice).  I felt comfortable with the radiation oncologist at the CK center,  then I was sent to consult with the neruo surgeon at another location.   I was told that the surgeon was responsible for saying whether or not I am a good candidate for CK and would provide the follow-up care post CK.
 
Well, let me get to my point.  When I asked him about post CK swelling and steroids, he acted like prescribing them would be far out of the realm of necessity!  Considering everything I've read on this forum, some form of steroid treatment is usually indicated.  Phyl, your doctor started you right away with the onset of treatment and JB's doctor after a couple of days.  This may sound crazy but I felt like running out of his office.  Was he minimizing the possibility of swelling and really that unaware that most post CK patients experience this complication and the related effects?

This neurosurgeon's response is making me question my CK facility choice.  My other local CK option would be to go to USC Norris Cancer Center but I'm so sick of going from doctor to doctor.  I was finally sure, now I am just depressed.  Forgive my rant.

Anna

 

[sgerrard]

Anna, I don't think it is unreasonable for a doctor to be reluctant about using steroids. My own ENT has the same view; save them for when it is really necessary. They are powerful drugs, with significant side effects, and can't be taken as casually as Tylenol or the like.

The Stanford procedure is to take one Decadron each day, immediately after treatment ( 3 x 6 Gy, by the way). That was it for me and steroids. I haven't taken another one since.

Back before I was diagnosed, I did get a prescription for Prednisone, to see if it would unplug my ears. After 5 or 6 days of  that, I was almost happy to hear that I had an AN and could stop taking it. Although the Decadron during treatment was no problem, the Prednisone was not much fun at all.

I don't think that most CK patients get put on steroids right away, and I think many end up never needing to take them. It is a balancing act between controlling the swelling and avoiding the side effects of steroids. I wouldn't worry about it; they will put you on them if it becomes necessary.

Steve

[ppearl214]

Hi anna,

Please keep in mind one thing... and I do believe Dr. Medbery, on the CK Patient Support website has noted this in past threads in the "Brain" section.... each location/treatment center (regardless of treatment choice) has their own protocols.  Some offer no steroids... some do, some short term, some long term, etc. Each situation is looked at case by case and each treating physician should make the ultimate decision with the patient.  I have challenged my team about it in the past..... they were open minded to what I had noted (basic same concern as your's) but in my personal situation.... it was prescribed. I think (and Dr. Medbery and the gang can advise if I'm right or wrong about this) is that based on the location of the AN (touted many times around this forum) and amt of potential swelling, they prescribe as needed..... I would discuss (and if need be, challenge) it with the potential treating physician. They will help make the decision based on their past history treating AN's with the treatment protocol and advise which may be best for your particular situation.

Hang in there... the decision making process, to/for me, is the worse.... but once done... you just rock and roll.  Hang tough!

Phyl

[Anna7]

Thanks everyone.  One day soon I hope to be a grown-up, post CKer like the rest of you!

[goinbatty]

I had the 5 daily sessions.  No steroids during treatment and thankfully haven't needed any....yet.  I can tell my hearing is diminished but not enough to do anything in my opinion.  I still hear that clicking noise but am used to it by now.  I've had a few days when my ear feels full and have taken Ibuprofen which helped.  Never a dull moment. 
Good luck
Sandra

[pearchica]

I love the detail of the CKers !  Heck, I didn't even ask about the dosage, I was just "sign me up gumby and zap this mother of a tumor!

I guess I had the same protocol as Steve at Stanford- 3 days, decadon at the end of each day. 

say should we call it the "Stanford protocol"- therefore it sounds really snooty - perfect for a cocktail conversation at the big game. I'm envisioning myself with a Mrs. Howell Accent - "Darhling, I got the Stanford protocol, now be a good boy thurston and get me another tini"...

Okay to answer Anna's question, the steroids do prevent fluid build up or "edema in the brain".  And I am probably the only ANer on the planet that liked being on steroids for three days.  But when I think of the micro surgical option I was set on (three prior opinions), this seemed so much easier and a risk factor I could live with.

Anna, I agree with Phyl and the rest of the gang- the research process/desicion making is the hardest part of the deal.  It is SOO MUCH better once you are done! Huge relief.. so take care, hang in there- you have a right to be discouraged, it's a lot of info to handle at once and quite frankly the medical community really isn't supportive of patients being their own advocates so it creates an additional stress.  But you are doing the right thing in asking and questioning.  Good for you! 

Take care, cheerleadering and cocktail queen signing off- Annie

[goinbatty]

Annie, that's hilarious!!  Let's all go to Gilligan's Island!! 

You are so right about the medical community not being supportive of patients as their own advocates.  Because physicians only see patients for maybe 5-10 minutes every now and then, I don't feel they have a good grasp of how the complications of this effect patients long term.  Thank goodness for this forum! 

The research process is just mind boggling.  I know I because obsessed and spent hours and hours on the computer and got loads of consults.  It was such a huge relief when I finally made a decision on treatment, almost moreso than treatment itself. 

I wish the best in your research.  Keep us all updated.
Sandra