Monday, 27 February 2017
Dexamethasone - "Pseudo progression "
My husband commenced dexamethasone at 2mg in the 4th week of radiotherapy. He continued that for 2 weeks and then was weaned off. After 2 days off he had a partial seizure of one leg. He was re-commenced dexamethasone at 4mg. He has been on the 6mg for 4weeks. He has symptoms of being unbalanced and difficulty moving one leg so the dose has been increased to 8mg. Within hours he could walk better. How long to "too" long to be on this drug?
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You have brought us to the tightrope so many patients and caregivers walk. How much Dex is too much? How comfortable is comfortable enough? In hindsight, I'd say your husband's ability to walk far outweighs his difficulties on less Dex. Some clinical trials require a patient to take 4mg or less but our NO (Jennie Taylor at UCSF) didn't hesitate to increase the Dex to increase Chance's quality of life. Tough call.
ReplyDeleteIt took my son 1 1/2 yrs. to finally wean himself off dexamethasone. He also has psoriasis so each time he would lower dosage he would break out with a rash all over his body and was so tired it was hard for him to go to work. He was up and down with the dosage until he was finally able to break free. It did take it's toll on his muscles.
ReplyDeleteFor what it's worth, my wife had severe cerebral edema from Opdivo/nivolumab,which barely responded at all to 16mg/d of dexamethasone. She experienced rapid improvement on Avastin and now is off steroids.
ReplyDeleteThe Avastin gradually caused increasing symptoms of rhinitis, myalgias, mental fogginess, and now abdominal pain. So we're likely stopping Avastin, but with no more nivolumab, we doubt she'll have recurrence of the edema.
Needless to say, there's a lot of variability in response to these newer agents. It may be worth a conversation with your neuro-oncologist.
But I've recently seen more articles on the detrimental effects of steroids in GBM, e.g:
Dexamethasone exerts profound immunologic interference on treatment efficacy for recurrent glioblastoma
https://www.ncbi.nlm.nih.gov/pubmed/26125449
So I'd generally suggest trying to keep the dose as low as feasible.
Thank you for your comments. We are continuing the Dexamethasone 8mg for a week. The last MRI did not show progression, however, was inconclusive due to inflammation/oedema. Symptoms have been worsening. The doctor isn't ruling out "pseudo progression "post radiotherapy . But I am concerned.
ReplyDeleteDoes anyone know of know cases of pseudo-progression? We have had a repeat MRI showing 3cm mass. Specialists still do not want to rule out a pseudo progression, however more likely it is tumour. At the same time they are leaning towards recommending palliative care and not recommended further treatment.
ReplyDeleteIs there any natural alternative to dexamethasone? We use boswellia but it doesn't seem to be effective.
Around your time period, my wife had a great deal of - what later proved to be - pseudo-progression. Our NO at the time, correctly called it as such because my wife was MGMT methyelated and, in his experience, this meant it was more likely to be pseudo-progression.
DeleteWe are currently dealing with a new growth as well, but the fact we're so far out - over a year - from radiation makes me worry that it isn't pseudo-progression this time.
I hope that helps.