Struggling post radiation - need input........

[windy]

I did not want to be one of the posters with problems post radiation, however, it seems I am one of the posters.  I could really use some input from the community with problems I am having post radiation. 

My initial problem started two weeks post GK with swollen, chapped lips.  Two days later, I had a red, irritated, itchy scalp.  Next, I had throat irritation and swollen gums with sensitivity to cold.  I also have intermittent pain/pressure in both temples and ears.  I also have shortness of breath.  I have intermittent discomfort in both eyes.  Finally, I have also had some bouts of fatigue.  Last night when I went to bed, I started having heart palpitations!  Thankfully, when I woke up they were gone.  All this has taken place in the span of this week.  I contacted Dr. Lunsford when the lips started to swell and he stated it was not related to radiation and not to take the steroid prescription I had been given.  He suggested seeing my PCP for the problem.  I did not contact him about the other symptoms because I had already been told by someone on the staff the you feel perfectly normal the next day after the treatment.  Am I having very unusual symptoms??  I am really wondering how long the symptoms are going to last.  I was told by the staff that you don't have symptoms until at least 6 - 18 months out, if swelling occurs.

Fortunately, I had an appt. this week with my long term dermatologist.  He has seen my strong reactions to various drugs, so he knows I am often an unusual patient.  He stated right away I was having a reaction to the radiation.  He said you have redness on your scalp, ears, and throat.  He gave me topical steriodal shampoo and lip balm.  He set me up an appt. with a local radiation oncologist.  I will be very glad to see her next week.

For the good news, my pin sites have healed very well and I do not feel much of the strange head pain anymore.  I am quite grateful for the healing part.

Since I do have a connective tissue disease I wonder if I am just faring worse than the average patient?  I am beginning to stay in an anxious state never knowing what symptom I am going to wake up with next.  My symptoms are worse at night and in the morning when I wake up each day.  BTW, I forgot to say, I am taking two Advil two times a day.  I have not taken steroids at any point, during or after treatment.   

Can anyone out there lend some advice or comfort?  I could really use some input.  Thank you in advance. 

[ppearl214]

hey windy,

ok, going to give it my best shot here....

we know that are you 2 wks post GK and things are bound to crop up (as with any form of AN treatment, regardless if surgery or radio).  I can only share from my experience, as well as listening to others that also took the radio-route....... I can share my scalp was itchy for approx 3-4 wks post treat.... scratch, scratch, scratch was all I could do..... but it resolved.... no biggie there.  Fatigue, we know, not only goes hand in hand with all types of brain tumors, but I've seen it as a major complaint for many post radio (adding myself in that headcount as well).  I have FMS (Fibromyalgia) as well as other issues... and for you to have disconnective tissue disorder (I have 2 dear friends with it, I know it can be VERY rough) may enhance on the fatigue as well (you may want to check with your dr on that one).  Anxiety of what is going on may be a contributing factor to the palpitations and such... so, I'm sending hugglez to help that cause.

I know that you researched, researched, researched before your treatment... and many here have shared those oddities that sometimes crop up post-treatment.  Many will/may resolve themselves....I'm not sure if the swollen lips and such are an allergic reaction to a med or seasonal allergies (the ragweed is brutal here right now), etc... so, yes, pls follow up with that with your PCP.....I can see your dematologist is doing what he can to help the cause..... that's great you have also followed up with him on it.

Thrilled to hear the pin sites are healing well... we all love to hear good news when you experience it!

All I can say is hang in there.  It sounds like you are doing the proper follow ups as you should... but keep in mind the research you have done as well. We know things may or may not happen. We know, for much of it, not to panic and understand that these things could occur....so, from me to you... hang in there. You know you have the healing hugglez coming.... its very soon post treatment and things should ease for you... day by day, inch by inch... hang tough! I know you can do it!

xo
Phyl

[Anomar11]

Windy,
My thoughts are with you.  While I haven't been there, I can appreciate how this must be unsettling.  When I have seen any dr. I've been told that ibuprofen for anti inflammatory purposes, the usual doseage is 600 mg every 6 hrs. or 800 every 8 hrs.  Your dr. can speak to this when you see him/her.  You need to drink plenty of fluids for the kidneys and have food in your stomach.  I hope you get some answers and things settle down.  Mona

[jb]

Windy,
I didn't have scalp problems or swollen lips, but did have a sore spot at the corner of my mouth and a numb sensation on the right (AN) side of my tongue for several weeks after treatment.  I seemed to have more twitching in that side of my face too.  I had headaches and weird sensations around my AN ear both before and after treatment.  There's probably no need to worry about your symptoms, but I think it's good that you're following up with a local radiation oncologist.  I ended up doing that several months after the fact, and wished I'd done it sooner.  Nothing against the doctor who treated me, but I think it's reassuring to have somewhere to go locally if you are having issues.

Good luck,
JB

[leapyrtwins]

Windy -

although I didn't have radiation and therefore can't give you any useful advice, I just wanted to say hang in there.

I hope things get better very soon,

Jan

[GM]

Windy,

I didn't have any of those symptoms...they almost sound like an alergic reaction - vs - something post GK. 

Did you receive a steroid treatment after you had your GK?  Some people have had a serious reaction to Prednizone (sp?)...it's way strong and has a lot of side effects.

Gary

[Tumbleweed]

Windy:

I had CK, not GK, but they are very similar treatments. I had profound fatigue and shortness of breath for 4 weeks post-CK (I am now 6 weeks post-treatment). I still have fatigue and -- only when walking -- shortness of breath, but this has eased a lot in the past couple weeks. In fact, I did a 2.5-mile hike in the woods on Saturday and again on Sunday; I was weak and out-of-breath most of the time, but thrilled to be able to hike again and none-the-worse afterwards.

About 4 weeks post-CK, I also started getting heart palpitations and rapid pulse every day. This went on for about a week to ten days and then stopped as suddenly as they started. I've been free of palpitations now for about a week, and my pulse rate has returned to normal. I had an EKG and oxygen test, and the results came back picture-perfect. I'm waiting for thyroid test results. But I think this was caused by stress over the treatment and its after-effects or by the radiation itself.

Dr. Chang told me the heart palpitations and rapid pulse (rapid for me; I'm normally around 56-60 bpm, but it was up to 80) are not caused by the tumor nor by CK. I have a ton of respect for Dr. Chang but wonder if he might be wrong on this. The brain is a mysterious organ and can do wierd things when subjected to stress (and radiation). Especially after hearing you had some of the same symptoms as I, I'm thinking the heart palpitations and rapid pulse were probably related -- directly or indirectly -- to my treatment. Dr. Chang did say that other patients of his have reported fatigue and shortness of breath after CK. He also said these symptoms were always transient and should resolve fairly quickly.

Hang in there, Windy. I think relief is right around the corner for you. It's a waiting game, but eventually the wait pays off. I'm starting to feel like my old (new!) self more and more each day. I know there will be some rough days ahead, but with each day that passes now the effects of treatment seem to be waning. I think it's just a matter of time before you start feeling better.

BTW, another member of our forum suggested I take rhodiola rosea (an herb) for my fatigue. I tried it and it very signficantly cut my fatigue and shortness of breath. I now take it every day and feel it really helps me more than anything else with dealing with fatigue and shortness of breath.

Best wishes,
Tumbleweed

[windy]

Hi All,

I finally broke down and started the steroids on Saturday.  Per my dermatologist advice, he wanted me to take only one to two pills of the Medrol Dose Pak per day.  He stated he really does not like the Medrol Dose Pak and did not recommend taking it in the six pills on down regimen.  He said it makes you feel as if you are having a heart attack.  As I had experienced increased high blood pressure and heart palpitations with the drug before, I knew this fact.  However, I managed to take all the pills even with the side effects in the past.  I started getting relief with the first dose.  The pain and pressure in my temples has lessened.  Also, my skin issues have greatly resolved.  The shortness of breath and fatigue have improved some.  I still have a little bit of issues with all, but certainly not to the same degree.  I am feeling much better than last week.

I did see the radiation oncologist today.  She said she would have put me on the steriods if I had not already started them.  She said they often prescribe them for patients who have undergone radiation.  She felt I needed to take the pills as prescribed.  I am confused as to how to take the medicine now with the conflicting advice.

In my case, I just could not get rid of the fluid left over from the treatment.  I stayed somehwat swollen in my head area until I finally took the steroid pills.  I think my body just did not know how to rid itself from the fluiid without some medicine.  I believe this may be due in part to the connective tissue disease.  I keep edema on a good day.   

Tumbleweed, I think you are right in regard to symptomology!  It does seem we have experienced similar issues.  I think everyone is different in their post radiation and post op path. 

Thanks guys.  I appreciate the input.

[sgerrard]

Hi Windy,

I took one of those six down to one packs, and didn't feel like I was having a heart attack.

If you have that experience before, though, I would listen to your dermatologist. I'm sure he has dealt with lots of patients taking steroids, and ones with issues of all kinds, and he would know your case well. The oncologist sounds like they are just sticking with the textbook answer, for lack of historical knowledge of your particular situation. Reactions to radiation are just regular inflammatory reactions, however exotic the stimulus may seem.

Plus, it sounds like it is working. 

Hope you keep feeling better,

Steve

[windy]

Steve, I probably should not have said what the doctor's feelings were on the drug.  He was probably just talking off the top of his head and was either speaking from some personal experince or from one of his patient's experience.  It definitely would not be everyone's experience.  I took it back in May as directed and called it a "miracle drug".  Even with some of the side effects I experienced, I still think it plays a major role in medicine in regard to healing.  I'm very glad to have had the drug this week!

[okiesandy]

Wendy,

I have been wondering how you were doing. First let me tell you that I had some minor sumburn feeling in one cheek post CK. A few weeks later I got some flu like symptoms. Achy bones, almost feverish feeling, slept many hours a day for a while. No way could mine have been from swelling I was on full blown Prednisone going into treatment. (I had an autoimmune attact the day before treatment). I spent nine months researching and thought I was going with surgery and the last minute changed my mind. (I can do this I am a woman). After treatment I was on a post treatment high. Between the relief of having made up my mind and the ease of treatment and the prednisone I was on a house cleaning high i was Super Woman. The body had to react someway. My CK flu as I call it lasted a week or so. I have found out since and because of another medical trauma that fatigue comes with the stress passes. Every one of my several medical problems says fatigue a symptom. I pretty much know it is a stress related problem by now. I am betting you will be better soon.  If you feel bad rest, if you feel good do as you please. Don't ever think there is a one size fits all solution, listen to what your body tells you.