Hello
I was dx with BC Sept 05, finished treatment by April 07 and then unfortunately started getting headaches, neck pain, blurred vision, got so bad had CT scan end of Aug 07 and found had 2 brain mets, one tiny and one larger and have been on steriods - dexamethasone - since beginning of Sept. They were brilliant for taking away the symptoms and was told that probably won’t ever come off them, which isn’t a biggy but has anyone had problems with the side effects? Not sure what is a side effect of the steriods or from the radiotherapy - had 5 sessions of WBR mid sept (hair all fell out which was expecting, it itakes a while to grow back hey, it is starting now, kind of 5 o’clock shadow over head!)
In regards to side effects seem to have put on weight in funny places, face, major double chin and stomach! Does anyone know if you can lose weight as normal while on these? My appetite is huge so hard to diet and then not sleeping too good so hard to be active and excersise, so maybe I’m wishful thinking about the losing weight idea! I get the shakes sometime, like been on a heavy night the night before!
I’m on 4mg a day and I know the idea is to try and reduce the amount taken as much as possible but when I try to reduce, I get headaches and get quite dizzy. Not sure if should perserve in case my body is addicted or if that is the symptoms back again so better to go back up to keep it stable. Has anyone else had problems reducing and any advice?
I haven’t been offered any other form of treatment, not sure if that is the norm. No other drugs or surgery. I had another CT scan mid November and one small met that was there before couldn’t be seen, but the larger main one was still there and hadn’t really reduced.
Sorry if waffled on a bit, I haven’t posted on a forum for a long time…
It could be me writing your message. I had WBR 10 sessions in November 2006. That’s when my steroids started continuously before had only had three days when having chemo.
I have a very quick response to dexamethazone and found them very helpful at first,gradually got them down to 4mg a day and now trying 2 mg a day after increasing to 4mg for Christmas/New Year. I had my family home over Christmas+ New Year and as I usually live alone its all a bit tiring although lovely to see them all.
I have in this period since I started steroids naturally lost 3 stone even if it does look like it has all gone on my face/double chin. I have bone mets too so excercise is out as I find it difficult to walk any distance. I have just spent two days clearing out wardrobes as they full of clothes 3 sizes too big but I’m looking at my big puffy face and don’t really recognise.
When I try to come off I’m dizzy just like you. My MacMillan nurse says if we find the right level then just stick with it for quality of life which I tend to agree with.
I have just had a stair lift put in as the effort of the stairs was too much pride comes before a fall and I just had to do it and it has made my life so much easier.
Hi Nix30,
Sorry to hear of your dx.
Just a thought…one of my fav’s…
Have you tried taking sleeping tablets, they really work wonders!!!
Regards
Bikinggirl
Hi Nix30,
Sorry to hear about your diagnosis. I have liver mets but when I was poorly last august I was on steroids for a while. I had similar side effects including HUGE appetite- had to get up in middle of night to eat! But also couldn’t sleep either, I was on sleeping tablets(Zopliclone3.75mg) which helped a little. The weight around your face is a well known side effect of steroids called “moon face”. It took me about three weeks to wean myself off them.
Take care,
Allie
Thanks for your responses everyone. Julia it is great to hear from someone that seems to be going through the same thing. I guess the benefit of the ‘moon face’ is it makes you look younger as no wrinkles! Well done on losing so much weight by the way, especially on steriods and you not being able to exercise much, did you follow a certain diet? Do you follow the ‘non dairy’ diet as I know a lot of breast cancer ladies recommend? I’ve tried to cut out as much as I can, but just can’t resist the odd bit of cheese and chocolate, obviously not together!
Do you not find the just wait and see what happens a bit frustrating, I’m afraid of missing out on some new drug or treatment that could be the miracle cure! I guess it keeps you on your toes and makes you appreciate everything and everyday. I’m certainly way more observant and appreciative of everyone and thing around me than I used to be and it seems odd but also way more positive about everything, who would have thought that could be possible when you get diagnosed with a terminal illness! Life is odd.
Hi Nix and Julia,
Ive just read your post, I am amazed that you are still on dex. I would look like a beach ball by now if it were me. Like you I had 2 tumors dx nov 06, had massive seizure and had golf ball size tumor removed a few days later. I also had a small 5mm on my left lobe, in an “not so easy place to get at” it shruck with 10 days of wbr but started growing again, (had scans in nov 07).
Anyway, I have just had (21/12/07) sterio tactic surgery (in Australia) You have the gamma knife over there, it is perfect for small tumors, please ask your doc. why they havnt offered it to you. Sheffield and Bristol are the main centres for it apparently. Anyway I will know how it all went in a couple of months when I have next MRI, apparently there is an 80% chance of it working and if the tumor responded to wbr apparently it does the same with sterio tactic. You can have this surgery quiet a few times apparently. It is non invasive. - except for a few screws in your head.
About the dex. I was on it for quiet a while the first time, and it seemed to take ages to wean myself off, it really throws your whole body out of whack doesnt it? I went on it again after the sterio tactic, was only supposed to have one tablet, but kept getting headaches from swelling, I finished it about a week ago after going down to 2mg. I felt great when I first started, the most energy Ive had for ages, then I started to feel sick and bloated like a dead cow? (for want of a more appropriate discription) I put on stacks of weight the first time, so I really was keen to not let it drag on, still get headaches but just use codine.
When I was first dx with brain mets the onclogists were so doom and gloom saying where there is one (tumor) there is 2, where therre are 2 there are 3 etc etc. My main aim in life it to prove them all wrong, as so far I have I dont have any new tumors the last tiny one was there in 2006.
Hi
I havnt posted for long time I posted for my sister who died in Nov and really only looked to see how people are.
My sister had brain mets, had them for 4 yrs in this time she had WBR, chemo and gamma knife. Whilst having WBR and gamma knife she had steroids and when on chemo. It is worth asking about gamma knife as you only have one spot also chemo, my sister had good response to capcitabine as crosses blood brain barrier, whilst on this she continued to work and enjoyed a good qaulity of life hope this is od some use.
good luck
hannah
Hi Hannah,
I just wanted to say hi, and that I’m so sorry to hear about your sister. November is no time ago at all - you must still be only beginning to come to terms with her death. I am glad you still visit the site and presumably find some comfort here, among people who know what it is like.
With best wishes and a hug
Jacquie x
Hi Hannah, I am sorry about your sister, it sounds like you were a great support to her. It is great to hear that she had a good quality of life and survived for 4 years after dx, this gives us brain mets girls great hope!
Have 5 brain mets and have had WBR and steroids, I come off them and have just gone back on due to a bit stumbly. GP says sometimes getting dosage right can be a problem and sometimes only needed for short time. I find I am hungry when 5 take steroids and weight goes up.
Treakle
Hi Suzy
Thanks for your email. I had an appointment with my consultant on Monday and flagged up about the gamma knife option. She is going to check with the brain specialist department to get their advice on whether it would be a good course of action for me, so that is good. Do think after my post WHR CT scan result being so good it would be good to take as much action now before things might start growing again or spreading.
Hannah, sorry to hear about your sister but as Suzy says it is definately a ray of hope for us that she survived and had a good quality of life for 4 years.
Regarding steriods think the best thing to do is get the dosage down as much as possible so side effects reduced. When I was on 1mg last year didn’t really have any side effects, even managed to sleep well!
Hi Nix and Treakle, hope you are both feeling well today, I just read Kit Kats post, Its so good to know she is doing well after all this time hey!
Im wondering why you had a ct scan and not an MRI after the Whole brain rads? (cheaper for nhs probably), the mri’s are supposed to be so much better? great they are looking into the gamma knife treatment for you.
Treakle how big are your mets?
I am seeing a chiropractor now, he is truely amazing, dont really understand how he can read the body so well, definately helped me with all my aches and pains, wish I had of seen him years ago.