Cyberknife Questions

[clr]

Here I am again with more questions. I wil try to make sense and not jump around because I do have some concerns.

Betsy (my daughter, her username is Bets) will be having cyberknife done in October. She goes on 10/5 for her tests. Her ENT says it will be 3 doses. She goes to school Tuesdays and Thursdays and works 12-9 or 9-6 Monday, Wed, and Fridays. If she needed to work all 12-9, they would do that for her. She does have vacation time she has to use before November or she will lose it. She plans on taking it on the days of her treatment.  Her ENT told told her if she works 12-9, she can come early have her treatment, then go onto work.  Is this for real?

Another concern I have is reading about the swelling, etc. She does have classes Tuesdays and Thursdays. Should she not have gone back to school? Will she be able to function/think as well as she is now? Will the ck have any effect on her studying? I am concerned that she should have possibly waited to go back to school. I know everyone is different but is it as easy as her Dr. made us think?

She has her tests on 10/5. How soon do they have to start the treatment after her tests?

Cindy

[Tumbleweed]

Hi, clr:

I'm not sure what tests you're referring to; more info is needed, please. But if your daughter already has CK scheduled, then I assume the "tests" are simply a CT scan (to get an image of the tumor that can then be used with a computerized system to work up the treatment plan) and the non-invasive fitting of the thermoplastic face mask that will be used during treatment. If that's what the "tests" are that you are referring to, CK can be performed the very next day.

As for side effects, everyone is different. Most people either breeze right through treatment with no side effects or suffer mild to moderate fatigue for a week or two afterwards. In rare cases (such as my own), the patient may suffer profound and debilitating fatigue for up to a couple months. She may or may not have difficulty concentrating for a week or so. If she has any dizziness now, it may (or may not) become slightly worse for up to several months after treatment before returning to her current state of equilibrium and possibly improving further (my balance was 15 to 20% worse immediately after CK, but improved dramatically six months after treatment to the point where I now have much better balance than I did before getting CK).

Here's my advice to your daughter: assume you'll feel fine and live your life. But also be prepared to take time off from school and get extra rest should you become fatigued, dizzy or otherwise adversely affected by the radiation treatments. Visit this forum for support and answers to your questions. Know you will get better in time; CK is an excellent treatment choice.

Best wishes,
TW

[ppearl214]

Hi Cindy (Hey Bets!)

As TW has noted, everyone is different post radiation (same can be said for the surgery as well).  I can share this.....

My CK treatment was a total of 5 consecutive days.  I took the week off from work to play it safe.  My treatments were at 9am each morning (Mon-Fri).  I did take Ativan they offered (some offer, some don't) and if I took it, I was told I couldn't drive home (my best friend came with me).  Well, I was done with treatment by 10:30am each morning, let my best friend drive .... went out for lunch, went shopping, walked my dog, logged online here and with work.... maybe napped in the afternoon.... went out for dinner... and did my normal daily routine.  Had to wait a few hours for the Ativan to wear off... that's it.  Did experience fatigue and when my body told me to nap, I did.

I could think just fine (I work full time in sales in hi tech.... was online and phones with my customers without issue).  Planned my wedding (which was 6 mos post-CK), planned my dad's 75th birthday gathering (1 month post CK).... I think you get the gist of it.

Bets will know if her body tells her to slow down.   As many here note, some may (or may not) experience fatigue, enhanced hearing loss (hopefully temp), some enhanced balance issues (some note it, some note they didn't run into it), etc. 

I know Bets will be fine... and do just great!

Bets, when you have the CK done... look for the "eye"... when you see it, you will know it! And bring your fave music with you. It was Eastertime when I had mine... and I brought in Chipmunks Christmas tunes!

I also agree with TW that the "tests" will probably be the CT Scan and mask fitting.

Please keep us updated on things. 

Hang tough!
Phyl

[sgerrard]

I had my last treatment on a Friday, and was back at work on Monday. I tired easily the first few months, and I didn't feel I was 100%, but I made it through okay.  I do computer programming, which requires a fair amount of concentration. I think school would be fine, as long as there is time for napping. The social life will be a bit slow for a while.

Steve

[clr]

Your responses were very reassuring! Thank you!!! 

Yes, by tests I meant the ct scan and mask fitting, sorry bout that. Actually, I thought it was more than a CT scan and didn't realize there was a mask fitting. I thought the mask was one size fits all.

As far as her balance goes, since she has no balance nerve and hasn't for a long time, will she have balance issues? Her balance has always been ok. Her drs said since she has had the tumor for so long her brain compensated for no balance.

Betsy is assuming she will be fine. I am the one with the concerns. I don't bring them up to her, though, because she worries about everything. So, as far as she is concerned, she will have her treatments and life will go on just the same.

With school and work, she has no social life right now. She comes home from work, heads straight to her room and opens her books. She is going to school to be a Pharmacist, hopefully, because she has no back-up plan.

Thanks again everyone. It seems I only come here and say something when I have questions. I don't contribute much here because I'm not sure if I should since I don't have the AN. My contribution would only be thru observing and living with Betsy. I wish she could find the time to come here but right now she is swamped with work and studying.

[mk]

Cindy,

As other people have pointed out, everyone's recovery is different.
I didn't have CK, but GK, but the possible side effects are similar, so I will share my experience. I was fortunate enough to not experience any fatigue after my treatment (actually it seems that the chronic fatigue that I have had for years has been disappearing in the last few months). I could have gone back to work the next day. BUT based on the great advice that I received from the forum, I chose to take it easy for the couple of months after treatment. So I took frequent breaks, tried to take some short naps whenever possible etc. Remember, our bodies need time to heal. I would say that since Bets has vacation days, she should take advantage of them and take some days off work. Also, she can notify her instructors at school about her situation in advance. Her school must have a health service, that can issue formal notices to the instructors, to make them aware that a student may need some deadline extensions, extra times for exams etc., if they have a health condition. I am a university instructor, and I frequently receive such requests. I am sure that Bets will recover in no time from her CK treatments, but I would also encourage her to take the best care of herself as much as possible.

Marianna

[carter]

my thoughts - i worked during treatments ...  my wife went with me on a 3 day  business trip - the week after CK ... we ended up going to China town, Alcatraz, etc after work.  i felt fine. 

two weeks after CK, i was worn out after working half a week so i took off each Wed for the next 3 weeks. I had to schedule the vacation.  i only needed to be off 2.  half a day the first week

for the next few months, i got tired way more easily than before ....  i learned that i can take a nap in the eveneings and during the weekends.  watch it - this can be addictive!!!!!

it was almost 4 to 5 months before i felt the same ----

i missed almost 4.5 days total ---- most has been for mri's   - i have to have the valium to get me through one ... i have used very   little sick time and banked vacation --- that i did not need.

everyone is different ....  just learn to listen to the body ...  that i s my advice  --- and i am sure that we are all different in what the body will say

[Tumbleweed]

As far as her balance goes, since she has no balance nerve and hasn't for a long time, will she have balance issues? Her balance has always been ok. Her drs said since she has had the tumor for so long her brain compensated for no balance.

If her balance nerve was removed in a previous operation, it is highly unlikely she will have balance issues from the radiation treatment. Such balance issues arise from the vestibular (balance) nerve becoming damaged or irritated by the radiation or from the tumor swelling (also in reaction to the radiation) and either exerting increased pressure on the balance nerve or producing inflammatory compounds that irritate the nerve. Since your daughter no longer has a balance nerve (on her AN side) that can be affected -- and her brain has already compensated for that loss -- it is highly unlikely her balance will worsen. The only caveat is that severe fatigue can sometimes cause dizziness.

Generally speaking, radiosurgery and radiotherapy (fractionated radiation treatments) can cause an increase in whatever kind of balance symptoms the patient has going into treatment. It usually doesn't cause new balance symptoms to appear. So, for example, radiotherapy might cause someone who has disequilibrium before treatment to have heightened disequiliibrium after treatment, but it is unlikely to cause vertigo if that symptom was not present before treatment. Even if you had vertigo in the past but it resolved itself before treatment, you are not likely to have vertigo return as a result of having radiation treatment.

Best wishes,
TW

[goinbatty]

I went for CK in DC.  Seems like my times were around 10:30.  Afterward, my husband and I went uptown to see the sites.  I'll admit I was tired but that was probably more related to the 8 hr drive up there than treatment.  I work from home so was back at it on Monday.  I took brief power naps in the afternoon occasionally for a few weeks as needed.  Had some mild side effects which seemed to peak out at around 9 months post treatment.  Only slight drop in hearing which is still in normal range.  Tinnitus recently amped up a bit but It hink that's likely more due to going to a concert and not watching my diet (caffeine, too much salt, etc).  Got to my act in gear again. 
Hope all goes well!!
Sandra

[NE Farmwife]

I had CK done at Stanford last January.  We were from out of state so we spent our time seeing the sights in San Francisco.  I couldn't tell that I had anything done--no fatigue, no dizziness.   One of my treatments was in the morning and we went to San Francisco afterwards for the rest of the day.  I think the other two treatments were later in the afternoon and there wasn't any problems on those days either.  We did our touring earlier in the day and hustled back for the treatments.  They gave me a dose of steroids after each treatment and as a precaution against not sleeping at night, I took two Tylenol with pm's and slept great.  Hopefully your daughter will be as fortunate. I would think that your daughter would be able to carry on with her everyday activities but I wouldn't push it if she doesn't feel like it.  Do be sure and let the student health department at her college know of her health concerns ahead of time.  Most colleges are willing to work with students when they have a legitimate health concern.  Wishing her the best!