steriods

[Red58]

anyone who’s treatment stop

Been put on dexamethasone if so what dose

And any side effects x

[Breezecherie]

Since July I have been on prednisone because of COVID-19 (shortness of breath, coughing). I have to stop my treatment Tecentriq (immunotherapy) because they interact together.

[Denzie Moderator Volunteer]

I was on dexi during chemo and tapered off when chemo ended. That was 2011. What I remember most of all was that I had a shortened temper and I ate anything that didn’t move.

[Denzie Moderator Volunteer]

Adding to my original answer. I was on a very low dose, it’s been over 11 years so I am a bit vague in dosage. It was probably 1mg four times a day. People who experience brain mets are put on higher doses. Dosage may differ according to other things as well.

What dosage are you on?

[Red58 in reply to Denzie]

Hi as you know all my treatment stopAs spread to brain they got me on 4mg but feel horrible zigzags front of eyes headache get worse they say lower them to 2mg x

[Denzie Moderator Volunteer]

Please forgive me, I had forgotten about the brain mets. I’m going to try to reach out to some old time members here and see if there is someone who can share experience with this dosage.

In the meanwhile, please contact the nurse at the Roy Castle Lung Cancer Foundation help line.The phone number is 0333 323 7200.

[Red58 in reply to Denzie]

Thankyou x

[sassassas]

Hi Margaretsorry, no experience but just wanted to wish you well.

Sarah x

[Red58 in reply to sassassas]

Thankyou so much they have gave me few month but I’m stillFight I know it will win but I give it a good run xx

[sassassas in reply to Red58]

Good for you Margaret. I hope you have many happy times over the coming months xx

[Red58 in reply to sassassas]

Thankyou so much you all keepUp

The fight ❤️❤️

[Denzie Moderator Volunteer]

Still reaching out. Didn’t want you to think I forgot.

[Red58 in reply to Denzie]

They told me today cut dose to 2mg but if still feel same half them they willSpeak me again Friday I will keep

Going I feel if head full cotton wool

And I’m walking on a foam mattress it strange feeling then mabe for hour or so I feel normal x

[Elle787]

I started chemo last week and they added it to my infusion. Not sure the dose. I had a lot of headaches for about 3-4 days. There was actually talk of keeping me on a regular dose post infusion but my doc said no. I am grateful. So far I don’t think I need it. Next chemo in two weeks so we will see. It is hard to know what causes what, so to speak. Headaches could have been from the anti-nausea drugs or just the chemo itself. But I was on prednisone in early July for a week and had a headache every night so I think that the dex was the culprit. Good luck to you in your treatment and journey overall.

[Red58 in reply to Elle787]

Thankyou hope all goes well with you x

[Jenniferroseolson]

I have been placed on different steroids over the past 7 years. During my first line of chemotherapy treatment, I took dexamethasone (5mg??) the day before, the day of, and the day after treatment. Side effects: possibly delayed my fatigue and symptoms of the chemo, increased appetite, sleeplessness if taken too late in the day. After my craniotomy surgery to remove tumors, I was placed on high doses of prednisolone (perhaps 60mg daily? a LOT) in addition to a medication to prevent seizures, so it's difficult to know which side effects were solely due to the steroid, but I had almost manic increased energy level, couldn't sleep, and highly increased appetite. This improved as I tapered down. Now, I have secondary adrenal insufficiency (my adrenal gland doesn't work anymore after starting immunotherapy). First thing in the morning, I take a daily maintanence dose to simulate/replace hormones that my adrenal gland doesn't produce anymore, most noticably cortisol. I started at 10mg prednisone daily, tried to go to 5 mg daily, but I found that 7.5mg is the right dose for me. It increases my energy level overall so that I am not exhausted or fatigued all day long, but I am sufficiently able to fall asleep at night. At 5mg, I was still too tired. At 10mg, I was jumpy and drove my family members a bit nuts because I would even talk fast and be volunteering them to help me with all sorts of chores/jobs, but the energy wouldn't last long enough to accomplish large ones. For me, steroids have had overall positive effects to help me get out of bed and have acceptable level of activity. I do also take magnesium each night for headaches and central nervous system per my neurologist, so perhaps that counters the headaches that some people have commented about on this string.Best wishes to you.

[Nsclc_survivor]

I was on 4mg dexamethasone for months after my craniotomy to control swelling in my brain. I ate everything in sight. The only other side effect was being hot and my face was red.