Has Anyone Experienced Swollen Lips Post Radiation?

[windy]

I had GK two weeks ago tomorrow.  I have done fairly well.  I do have some head pain at times, but overall feel pretty well.

Today, I awakened with swollen lips that seem to feel quite abnormal.  I contacted Dr. Lunsford and he said this has nothing to do with radiation.  He stated I needed to contact my PC MD.  Has anyone experienced anything like this post radiation?  It seems strangely coincidental as I have never had this in my life with the exception of the time I was on Accutane for acne.  I don't know where the reaction would be coming from if it is not radiation related.

One thing I do want to note is Pittsburgh does not give you steroids the week of your treatment, as others on the board seem to receive.  It is not their practice.  When I felt a lot of pressure and pain around my eye area and head the week I had GK, I called their office to report the discomfort.  One of the physicans told me it was not normal to feel pressure or head pain after having radiation.  He stated "you feel perfectly normal the next day after radiation."  I must be a very unusual patient, I suppose. 

Any input you can provide would be helpful.  Thank you.   

 

[Betsy]

Hi Windy,

I also had some unexpected swelling a few days after my radiation treatment, only it was my right eye (AN is on the left).  I woke up with it too, and it was quite alarming because I thought things were going great.  My radiologist felt it was most likely due to trauma from the headframe.  There had been a problem positioning the headframe and it had to be taken off and put back on, so I had a few more holes in my head than expected.  Ice, tylenol and time took care of most of the swelling, but I have to admit that there's still a very slight "droop" on that side.  None of my doctors are concerned about it, so I'm not either.  As long as the AN isn't doing anything, I'm satisfied.

As to the steroids, I didn't take them immediately afterward either.  I was given them via IV during the treatment though.

Hang in there....the weeks after treatment are a conflicting time.  The treatment is finally over and done with, but it's a long wait to see the results.  Have you seen your Primary Care doc about the swelling yet?  Let us know how you're doing.

Betsy

[windy]

Thank you Betsy for your reply.  I did not contact my PCP because I do not think she will have any knowledge of radiation (even though the doctor says the problem is not from radiation).  My lips remain the same.  I don't think they are quite as swollen, but they feel as if I have been lying on the beach with no chap stick!  There are also small bumps on them.  I am feeling calmer about them as they have not gotten worse and seem to remain in the same state.

Thank you for sharing your experience.  It makes me feel better!!

[ppearl214]

Hey windy,

I did not experience swollen lips post-CK and I am aware that not all facilities prescribe steroids post-radio treatments... some do, some don't..... but typically given to help prevent edema from the radiation to the growth itself.... when I ran into issues immediately post-CK, I phoned the radio-onc directly... he is the one that did the monitoring of my issues post treatment and on occassion, did prescribe meds if needed (2x for me).  Please keep your radio-onc in the loop for any issues and they should let you know if anything needs to be prescribed.

Hang in there!
Phyl

[windy]

I don't even know who the radiation oncologist who assisted in the treatment would be, unless he is the physician that I talked to on the phone that said you should feel perfectly normal the next day after GK treatment.  I awakened today with more swelling of the lips and a rash in my scalp (hair area).  Fortunately, I have an appt. with my long time dermatologist who has seen many of unusual reactions to drugs and the sun.  I will be glad to see him.  I hope this all settles down soon.  I may need a round of steroids.  Dr. Lunsford stated I did not, but I guess you might need to see me in person to determine that I may well be having some sort of unusual reaction.

For any GK future patients, please understand I do have a connective tissue disease and this may well be playing into the reactions.  I do not want to scare anyone from having GK treatment.

[Janusz]

Hi,

I'm 5 years after GK. I still have problem wit cheek and lips. I have filling that cheek and lips are burning, tingling and that my lips are swollen. 

Hes anybody have something like that or heard of this post GK problems?

Up to 6 - months post GK I hadn't any difficulthies beside stuff I had before ( decreasing hearing, loss of balance )

  Janusz