how did you decide when to opt for steroids post FSR??

[marka]

Hi all,

I am trying to decide if I should have a short couse of steroids post radio therapy treatment. Back in July-Aug of 2007 I had a Fractionated Radiotherapy for a 32mm AN (45Gy over 25 sessions). I knew of the all the potentual side effects, but I suppose I didn't think it would happen to me. I had a few faical spams in the first 6 weeks or so, but they resolved themselves and at the 3 month scan the tumour had reduced to 30.5mm and I did not have any more facial problems for sometime. Now, its been nearly 5 month and the faical spams are back. I tend to have unplesant mornings with the bottom of my chin twitching quite a bit and an ocasional twich under the eye. This is all intermitted through most of the morning, but goes away in the afternoon. There is also alot of tightness right under the nose and around the lip which again goes away by the afternoon. On some days I get a full facial spasm that lasts about 4-5 minutes. Normally in the morning shower. Last couple of days I have started having a twich behind my ear as well and also a shooting pain in one part of my head. I keep thinking that the facial symptoms re-appeared when it got cold. About middle of november it started getting cold and my face started feeling strange at times...

My consultant (I am in the UK, so british terminology) has discussed steroids with me before, but he did say if possible I should try to do without them as they may have side effects of their own. I saw one of his team week before last (he was away at a conference and I was a bit concerned so wanted to see someone right away) and was reassured that my symptoms didn't sound like I had hydrocephalus and there was no need to move up my next MRI (scheduled for Feb).

The feeling I am getting from the consultant and his team is that these are transient side effects and its a matter of me coping with them. If I can't cope anymore I need to ask for steroids, but thats mostly my decision. So far everything they have heard me describe dosen't sound to them like sterioids are warranted, but I can certainly override that if I feel that the side affects are very difficult to put up with.

So I wanted to get a few experiences from the boad as when you decided (or didn't) to ask for steroids. Its quite a hard decision. I have difficult mornings and think I should call and then I have a good afternoon/evening and think I can cope.

Also has anyone had steroid injections into the facial nerve? The consultant mentioned that if oral doses of steroids were not affective there was the possibility of a steroid injection straight into the facial nerve (sounds unplesant)....

[Mark]

marka,

I would tend to also believe your symptoms are transient in nature and I know the general advice from the docs over of the CPSG board is to only go with Steroids if absolutely necessary. I'm not sure what the follow up protocol would be in the UK, but most docs here would do an MRI around 6 months after treatment. Since you're at the 5 month point, it might be worth discussing this with the consultant. If it shows that the AN has swelled due to the radiation effect, then he might feel steroids are indicated. If it looks like it's the same or reduced in size, then the issues are probably related to facial nerve irritation which should resolve itself.

Just my 2 cents,

Mark

[sgerrard]

I don't have a facial nerve issue, but I experience the same gnawing doubt every time my ear pressure goes up, or it seems like sounds are more muffled. "If I don't do steroids, it is surely going to do irreversible damage and I'll be deaf in no time!" I think, only to find that 12 hours later it is back to the same old status. For me, I am usually at my best in the morning, but by the evening on some days I am sure I will need to call the next day.

Temporary steroid treatment is a good intervention if something goes really bad and stays that way. For the repeating symptoms, though, I think longer term steroid treatment is a real problem. All the docs seem to recommend against it. While a short treatment might relieve the symptoms for a week or two, if they are just going to come back afterwards anyway, there is probably not much point in it.

That's what I keep telling myself, anyway... 

Steve

[marka]

Hi,

Thanks for your replies. I called the consultant in the end and he wants to do another MRI before discussing steroids so I am going in next week to have a scan and a chat. My next scan was scheduled for early feb, but with all of my transient symptoms the consultant wants to have a look whats happening inside earlier...

Mark

[fbarbera]

I did a three week tapering regimen of dexamethasone (oral) about 2-3 months after CK treatment for a 2.6cm AN.  My symptoms did not involve the facial nerve -- they were more like intense pressure, buzzing, fogginess and some dizziness as well.  I too was advised to hold out if I could as the symptoms are most likely related to post-treatment swelling, and I am generally skeptical of taking medication and was VERY reluctant to take steroids.  But at the end of the day, my symptoms were awful and demoralizing and I just wanted relief I to keep me positive and moving forward.  And I was willing to experience some side effects as a trade off.   In fact, the steroids did provide relief and I experienced only very minor side effects (a little restlessness and disrupted sleeping, but I've had that issue since diagnosis).  After completing the regimen, some of the symptoms returned, albeit in a less intense form (which could be due to the mere passage of time).  I'm still dealing with ongoing balance issues and am considering another regimen of steroids to carry me through another part of this post-CK inflammation.  Bottom line:  it is definitely wise to be cautious and judicious about taking such intense medication.  But they are useful and can serve a helpful purpose in the right circumstances.  I was glad to know the symptoms related to swelling and therefore might resolve once the tumor settles.  Whatever your decision, best of luck and regards for a great holiday season. 

Sincerely,

Francesco