tips on handling FSR treatments

[BeJoi]

I'm wondering if anyone knows some tips on handling a long FSR treatment plan.  Are there certain herbs, foods, or other things that might help me tolerate the radiation better?  Any information would be very helpful.

[Jim Scott]

Hi, BeJoi:

I underwent FSR (26 treatments) between September 11th and October 16, 2006, following microsurgery in June of '06.

I can assure you that the FSR treatments are not all that stressful.  At least they weren't for me.  Each session lasted about 20 minutes and was completely painless.  I suffered no ill effects from the radiation.  I doubt you will, either, although we're all unique and no one can guarantee outcomes.  That being my experience, I cannot recommend any herbs or foods for you to have during the FSR treatments and frankly, I doubt you'll need them. 

However, I'm not a physician and so, I cannot state with an absolute medical certainty that you won't, although my radiation oncologist never recommended any special kind of diet or supplements when I was having the FSR treatments.  You'll be monitored and in my case my radiation oncologist met with me once each week and asked me how I was tolerating the radiation (just fine, thanks) and if I had any problems.  I didn't and I trust that you won't, either.

Jim

[Windsong]

I haven't heard of any certain foods/ herbs etc. but one thing I was told in advance was to not do the "pump up the antioxidants" during treatment. After the treatment it was ok to do that.

In terms of how to handle it daily re tips I got a few good ones from an Aner who had had treatment before me. Some of them were ones I did not need as we all react differently to those little things. For example if you are travelling long distances each day for it... oh.... and what your synptoms are before starting etc.  Some of us go in with little previous symptoms so really other than super comfortable clothing and no turtlenecks and such, and looking out for all things that make each of your days easier before and after treatment, there isn't a lot that is generically specific.

A few tips that I recall from my radiation team beforehand were things like use baby shampoo for washing your hair, drink lots of water etc....basically follow a healthy lifestyle i guess too.

One thing I found was  needing lots of water and i probably went through more face and body lotion than i ever had before.

The procedure itself is pretty easy  for folks so so all I can really add is that whatever makes your day easier once you get home set all that up in advance like easy meals and so on. You may or may not be tired, you may have a spouse to pick up the slack, you may live alone, you may have kids, you may have none, your An may be really tiny or it may be much bigger, you may have no symptoms almost or may have more before even heading for treatment. Do know that the stats are pretty good for fsr and  you might sail through this without even noticing that you are doing it.

Best wishes and God bless,
W.

[BeJoi]

Thanks for the info.  I will be doing the treatments in the morning and then going to work in the afternoon (I'm a psychotherapist and can adjust my schedule accordingly).  I'm most worried about nausea and feeling tired, but it seems that neither of you had problems with that.  Jim, have you noticed any long-term affects?  I guessing not, since you didn't mention them.

Thank you again.

Beverly

[Windsong]

Bejoi,
First of all, I wish you all the best tomorrow!

I haven't heard of anyone having nausea and i didn't myself either, but I have a little confession... I took a gravol before I left home mostly because someone drove me each day and I would be sitting in the back of the car often ... I knew from when I was very young and from  things like boats and airplanes as an adult that I um had some motion sickness problems generally so i took the gravol for that  not the fsr....

but really, I honestly haven't heard of anyone saying they had nausea from fsr and on the days i sat in the front seat  (different driver lol) on the way there or back i didn't bother with the gravol at all....

fatigue can go hand in hand with simply having any kind of a brain tumour really, but if you are generally in good health regarding other things and working too, I'd guess that yours might be minimal.... or none at all, really....

I do at this moment recall being quite happy and "normal" after my first fsr treatment (and let's face it, it's a new experience and one doesn't quite know what to expect other than from what one has heard or read so it's tiring simply from "nerves" maybe) and then the only thing was that as I waited for my ride and discussed where to have dinner in a restaurant downtown with a friend who had also come to be with me the first day, I did get hit by a wave of tiredness and decided to go straight home... but again that was close to the dinner hour  not like in the middle of the day etc....

fsr is also various lengths of days in treatment depending on the machine and treatment protocol so for someone having 3 days of treatment they may notice no fatigue at all during it, and for someone who is having 25 days, along with other variables such as how long it takes to get there, what the daily schedule re work and so on is anyway, and oh all sorts of things that tire people out regardless of something like An treatment, well, fsr itself during the treatment may not cause any fatigue? I recall being quite up and fine , in fact very buoyant emotionally, but then getting fatigued because of a long ride home (rush hour and winter) and often stopping half way to have a break from traffic of all things and having this really nice meal in a nice restaurant lol....

I know some people switched to half days at work because let's face it, with 25 days it eats up a lot of time... then again the 3 day ck fsr is so short it's more like little blips on your personal life screen ....

if You are tired i'd say listen to it and rest as you need to.....

thumbs up for tomorrow!   

W.

[chelsmom]

Hi,

I hate to be the one to tell you this but my daughter Chelsea had terrible side effects from her treatments.  She had 28 treatments and after the first one she said she felt like she had been out in the sun all day.  The next day she started feeling really fatigued.  After the first week the nausea was with her off and on day and night.  Each week she was weighed and met with the Doctor to see how she was doing.  For the first 3 weeks of treatments she lost 3 pounds each week.  By week two she was now sleeping non-stop and started vomiting almost anything she ate.  The doctors felt this had nothing to do with the treatments and that perhaps her shunt was failing.  She had a CT scan and it wasn't her shunt.  On the 15th day of her treatments she was put on 8mg. Decodron per day and within a few days the symptoms were almost gone.  She made it through the next few weeks feeling better and when her treatments where over,  just before Chistmas, they started tapering the decodron.  She was on a long taper of 25 days.  Two days after she quit taking this drug the symptoms returned.  She went 6 weeks getting sicker and weaker before they finally put her on a low dose of Hydrocortizone which has help a lot.  She has been doing this for 6 weeks now and today the doctor told us to start a very very slow taper again and see how she does.  They want her off the steroids ASAP.  Therory is that there could be some swelling going on that is making her sick even though nothing was visable on the MRI they did in Feb. 

I know this is not how people usually react to FSR treatments but Chelsea has been the exception every step of this whole ordeal.  She, like Jim, had surgery before her treatments.

My intent is not to freak you out but to let you know that not everyone's experience is as esy and pleasent like the video they show.

All my best.My thoughts and prayers will be with you.      Michelle

[BeJoi]

I'm sorry to hear about  Chelsea, Michelle.  I know everyone has their own experience, and I hope her tapering off now will be successful and she'll feel back to normal.  I suspect her surgery may also play a part.  My FSR treatment will not be until the latter part of May.  But I will let everyone know how I'm doing when while I'm going through it. 

 ::)Beverly

[Jim Scott]

Bejoi:

I drove myself to and from the treatments each day, a 62-mile round trip.  However, my wife accompanied me 'just in case' I needed her to drive on the way home.  In the 5 weeks of treatments, I never did.  It was a beautiful autumn and, most days, we both just enjoyed the ride.  The facility where I was treated was, no surprise, a cancer treatment center adjacent to the hospital where I had my surgery.  There, I saw many folks a lot worse off than I was, which helps put your situation into perspective - real fast.

I did not experience nausea during or after the FSR treatments.  In fact, I had very few post-treatment problems other than a feeling of 'tightening' around the location of the remaining tumor, which my doctor said was relatively normal as the tumor tends to 'fold over' on itself after surgery and, in addition, the bone is healing around the titanium 'patch' the surgeon used to close the skull.  Fortunately, ibuprofen (400 - 800 milligrams per day) stop the discomfort, so it can't be all that serious and my doctor is not concerned, either.  I'm just thankful that I never experienced headaches, as some do.  Other than that, I haven't experienced any noticeable long-term effects from the FSR treatments.  I'm now 6 months post-FSR, 10 months post-surgery.

I did caution you that I can only speak (as it were) from my own FSR experience.  Others have less pleasant experiences.  There simply are no guarantees.  That this forum offers the accounts of a variety of AN patients with a wide range of experiences related to AN surgery and/or radiation is a great benefit.  Some AN-related sites have too much in the way of AN 'horror stories' and others ignore the downsides of AN treatments, especially radiation.   Here, you get compassionate, helpful people with AN experiences both positive and negative.  I can only hope that our input, while perhaps a bit conflicting at times, helps.  We try. 

Jim

[BeJoi]

Hi Jim,

I really appreciate your accounts of your experience.  I'm well aware that people have different experiences, but I also know that our beliefs and fears can color the way we experience anything.  I feel very good about my choice for many reasons.  I'm glad I'm going to Emory, where they have much experience with ANs.  I also am glad I'm going with the longer treatment.  My gut tells me that it will be safer and more effective than the one-shot deal.  My father, who is retired and a former cancer patient, will be available to go with me to treatments if I need him.  However, I think after the first time, I'll be fine to drive myself and continue with my life in as "normal" a fashion as possible.

I'll be writing about my experience when I start the treatment in late May.  Until then, I'll be logging in and reading as much as I can.  The people on this site feel very warm and wise to me, and I'm very happy to have found it.

Beverly