One year post treatment (a little late.......)

[windy]

Hi All,

I have not posted in quite some time.  I have been in my own little AN world, so to speak.

I had my one year MRI review in August.  I was told I might have a little bit of shrinkage, but if I did, it would be "too early" and they would "know more in a year". I took it as a positive review.

I have debated back and forth whether to post my symptoms after GK treatment.  At times, you can feel quite isolated and alone in your own post treatment problems.  It is for this reason, I am posting my experience.  If it helps someone who has not had a symptom free post treatment, I have reached my objective and am glad.  It is comforting to know you are not alone.

When I think back to my GK treatment, it is one that I have replayed in my mind many times.  I passed out directly after my GK treatment and had to stay overnight in the hospital.  It seems quite apropos now.  It seems that was symbolic of what was to come.  I wanted to be a "post toastie" that had a wonderful post treatment story saying something like I could not tell I had anything.  However, that is not just not my case.

First of all, thank goodness for steroids.  I have been on and off steroids more times that I can count!  I have had a true host of symptoms that have needed something more than Advil since my initial treatment.  My symptoms that I experienced early on, but have since resolved, was ear pain on both sides, eye pain, heart palpitations, shortness of breath, extreme fatigue, and very bad head pain on both sides of my head around my temple area.  Fortunately, these symptoms are long gone!

I do deal with a variety of other symptoms.  First, is head pain on the AN side.  I deal with headaches on a continuous basis.  It is not unusual for me to wake up several days in a row with very bad head pain only on my AN side.  At times I have gone through periods where I think they are gone, but they rear their ugly head again.  I have also had facial scarring that continues to worsen. It started two months post treatment.  It is primarily in my chin, but is all over, as well.  My chin even has indentions in the skin.  Thus far, it has worsened.  My doctor recently described it as "accelerated aging" from the radiation.  I have been told by my physician it "will probably continue to get worse".  I certainly don't find that comforting.  It has been a "bitter pill to swallow", so to speak.  I keep a constant fullness in my ear at all times.  Maybe that is normal??  However, it does resolve with steroids, but later comes back.  Also, I have had definite hair loss that appears permanent.  Fortunately, I had very thick hair prior to treatment, thank goodness.  I, as well as my hairdresser, can definitely can tell a difference.  I am not sure if others can tell though.  Also, I have scalp itching and redness (with heat) that started a few weeks after treatment and has not stopped since!!  It drives me crazy.  I have been given a variety of steroidal shampoos to try.  None have resolved the problem completely.  Lastly, I developed internal tremors about six months post treatment.  I have been told by my neurologist that they think I have damage to my brain stem from the radiation that is causing the symptoms.

Please note that I do have a body that has immune issues.  So, even though I was assured by my treating physicians that the "targeted treatment" would not an issue, I think it is possible they could have been an issue.  I just don't know.    

For me, the post treatment problems were only made worse by the lack of admission from my treating physician at my treatment center.  I have not had ANY symptoms recognized as being from GK treatment, not even one!  I have had to see a dermatologist for my skin and scalp. a movement disorder neurologist for my tremors, and will see a headache specialist neurologist in the future for my head pain.  It would have been nice to have just had help from my treating physician or at least some admission.  Also, I wonder where the facility gets their percentages and symptoms from treated patients.  I have never been sent a questionnaire from their office, so it makes me wonder how they arrive at their statistics.

On the positive side, my hearing seems to doing okay.  My last appt. with the ENT revealed I had 100% hearing recognition with loss in high tones only.  Also, I do not have facial issues, other than cheek and lip tingling that comes from time to time.  My eye does droop more on my AN side, but since I have skin issues, it may come from that problem.

Right or wrong, I have looked back and thought what if....  What if I had taken steroids as soon as I had treatment (they were not recommended by the on call doctor)?  Would they have lessened what was to come?  Also, what if I had chosen another facility and what if I had chosen another treatment?  Would things be better or could they be worse?  I know things are just what they are and one must accept them.  I have gotten better as time has passed with acceptance.  It makes you stronger, as well.  I am grateful to not be worse.  One can always be worse and I am grateful to not deal with more.  There is positive sides to things if you just stop and take stock.  

I am quite grateful to the knowledgeable people on this board who were so generous with their time when I was deciding on a type of treatment.  I am forever grateful for their help.  Thank you all!

[sgerrard]

Hi Windy,

Welcome back from your hiatus. Overall your MRI result sounds good, with hearing preservation and good signs of tumor control.

I am sorry to hear about all the issues. If it is any consolation, my impression is that steroid use to treat symptoms after radiation is mostly for relief, and doesn't really affect what symptoms you may develop over time. The exception would be when responding to sudden hearing loss, which steroids do often prevent from being permanent. With immune system problems added in, it probably is difficult to sort out exactly what is causing what.

You sound like you are coping pretty well with it. The general experience is that it does keep getting better with time, even if sometimes it just because we get used to it all. There is not much point in looking back and wondering, so just get keep looking ahead. As Rich said recently, count your blessings. If there are a few less of them now, that just makes it easier to count what's left.

Best wishes,

Steve

[Sue]

Oh Windy, I am so terribly sorry you have had such difficulty after your treatment.  There is not much I can say, except that it sounds like you have had a hellish year, and I certainly hope it will be better from now on.  I have never heard of some of the problems you are having, and I am saddened by what you have suffered. 

Keeping you in my thoughts,

Sue in Vancouver USA

[Jim Scott]

Hi, Windy - and welcome back!

I'm sorry to learn of the myriad problems you've had following your radiation treatment but I admire your tenaciousness in attempting to surmount them or, in some instances, fight them to a draw.  The fact that you've retained your hearing is good news, as is your avoidance of facial paralysis.  I think your overall attitude is admirable and certainly has helped you to cope with the issues you've had to deal with this past year.  That you seriously considered the value of posting your not-so-great GK experience here shows a genuine sensitivity for our members.  Frankly, I'm glad you decided to post.  Although we never attempt to sugar-coat the possible ramifications of either surgery or radiation, reading the experiences of a GK patient with post-GK complications is revealing.  Of course, your experience is unique to you and as I always warn, one AN patient's experience with surgery or radiation does not determine what experience another AN patient will have, be it good or not-so-good.  I can tell from your post that you fully realize this and are simply offering your story, which is all any of us really have.  Thanks for posting and I hope the next year is definitely better for you on every front.

Jim     

[windy]

I appreciate your replies and encouragement.  You are all very kind individuals!

I want everyone to know if you choose GK or any other form of radiation, you most assuredly may have a great outcome!  We all know there are very positive outcomes from the various posts on this board.  There is that possibility that your post treatment may not be as you had hoped, but there are others that understand what you are going through.  

I am still grateful, regardless of "issues", and do not consider my treatment a failure.  I feel sure my tumor has got to be on its way out!!

[Nancy Drew]

Thanks for posting Windy.  I think it is important to share here on the board....the positives and the negatives.  Like you, I have maintained all of my hearing post GK.  For me, my biggest fear was the possibility of losing my good hearing.  I was worried that I would regret having GK since CK is supposed to have better odds for hearing preservation.  Maybe we were the lucky ones with regard to hearing preservation.  Of course, we never know what can come up down the road since it is a waiting game with radiation.  I wasn't expecting the balance issues just as you didn't expect all that has come up with you post GK.  I think it just shows that our ANs are all different, and it's a grab bag as to what we get no matter what treatment we choose.

It is appalling to me that your followup care with Pittsburgh has been so poor.  I wonder if this is the case with other Pittsburgh patients.  Maybe some folks can chime in here.  I had my Gk locally and have been fortunate to have good post GK care.  Hang in there Windy.  We are not strangers to each other (since we PM often), but I thought I would add these comments anyway.

Nancy   

[windy]

Thanks Nancy!!  As always, I appreciate you and your support.

I agree with everything you said.  It was very well put.  You are right, the positives and the negatives from treatment are out there and hopefully will be shared on both sides.

   

[mk]

Hi Windy,

thank you for posting this very informative post-treatment report. It is important to have accounts of both positive and negative stories. This certainly gives a more balanced approach to whoever is contemplating treatment. I am sorry you had all these issues, this must have been a very tough time for you. I have been giving some thought on the symptoms that you have experienced, since they seem to be so uncommon.

Obviously the headaches must be due to the presence of the AN. It is very frustrating that your doctors will not try to offer some relief from that. From my understanding here on the forum, there are several others with headache problems, that got relief by using appropriate medication.
Regarding your skin problems, could they be due to the prolonged use of steroids? Steroids can have very nasty and strange side effects. See for example here http://www.mayoclinic.com/health/steroids/HQ01431. Thinning skin is one of the rare side effects.
Could you ask your doctor or pharmacist for a list of possible side-effects for the particular steroid you have been taking?

As for hair loss, I also experienced some post treatment. Even my hairdresser noticed that my otherwise very thick hair was dry and looked thinner. But at the same period of time I had been extremely stressed and depressed, my appetite was poor and I lost quite a bit of weight. So I can't really tell if the hair loss was attributed to treatment itself or to my extreme stress. Fortunately this is all gone now.

As for the tremors, passing out after treatment etc., they could be related to the brainstem - although your AN was not extremely large, so your brainstem shouldn't have received a very large dose of radiation, but also could be stress related. Your Pittsburgh doctors should have been able to answer that question, since they have the actual plan where the isocenters describing the radiation dose are mapped out. Again, it is frustrating that they will not give you an answer on this.

All I can say is hang in, at least your MRI looks good so the AN  itself is stable, and so is your hearing. Hopefully your symptoms will resolve with time. Take good care of yourself.

Marianna

[windy]

Marianna, thank you for the information you provided.  I appreciate you going through the symptoms with thought.  

I had been on steroids prior to radiation and did not have the skin problem.  I have been told it may be because I have such fair, thin skin to begin with, and have lupus, as well.  It may be a triple combination.  My rheumatologist said people with lupus or lupus like symptoms often can react adversely.  The steroids could be making it worse.  My face stayed slightly swollen for almost two months after treatment and never returned back to normal until I took the steroids.  I think it was a reaction to the medicine injected for the frame and the radiation itself.  You know how many others on the board say they have hot flushing in the face or head itching early on?  I did, as well, but it never really stopped for me.  I had a young doctor tell me he had seen things like mine with radiation, but only in very fair people.  I most definitely have fair, delicate skin.  Also, I have reactions to drugs often.  Some doctors wondered it was the medicine they injected that did some of the damage.  I have scars left behind where they injected the medicine and all kinds of lines and in the forehead that was not there before.

As far as the passing out, I don't know the exact cause, but my guess would be medicine they gave me during treatment.  The tremors are internal and can not be seen visibly.  They started in my neck and later went to the spine.  They then progressed to my arms and legs.  I had wondered about my brain stem being the culprit prior to the neurologist suggesting the brain stem could be the problem.  I was told by another radiation oncologist that I was given a "maximum dosage" to my brainstem.  I don't know if everyone receives different dosages or not, but would think they vary depending on your doctor.  My report read that my tumor was up against my brainstem and did impinge upon it, but did not contort the brainstem.  I think that was the proper description.  It has been a long time, so I said that from memory......

Thank you for telling me about your hair, as well.  I don't know if my problem is permanent or not.  I am over a year out.  However, I am hopeful from your post.  I had to wait a year to highlight my hair again because my scalp has been so inflamed.  My hairdresser was scared to color my hair in fear of a further reaction.  Fortunately, my scalp did okay with the color.

It is true that my guidance after treatment has been little to none.  I have been told to check with my PCP on every problem (except one case of hearing loss) and that my problems were not from any treatment I received at their facility.  I do realize I am probably much more of an unusual case, but surely they have heard of headaches, etc...  Oh well.......

Thanks again for your post.  I appreciate your help!  I will keep in mind all the things you said.