Hi all,
My dad is on the last leg of his steroid taper and is really struggling. Extreme fatigue and total loss of appetite as well being highly emotional. I think these are all common withdrawal symptoms but was wondering if anyone knows of anything that might help?
Is he tapering because he just finished radiation or is he at a different point in treatment? If it is just after radiation, the radiation is probably the cause of the exhaustion (which can last for quite a while).
ReplyDeleteLavender essential oils help my daughter when the emotions are out of her control. I have her breathe deeply from the bottle for the sudden onslaught of emotions or diffuse them periodically when I think of it.
Thanks. Hes 8 months post radiation so I think these latest problems are mostly steroid related....
ReplyDeleteA few thoughts that might be of use:
ReplyDelete1. It's possible that the taper might need to be even slower than what you're doing, depending on what dose he's been on and how long. In our case, about 6 months of decadron at doses >6 mg. Dropping down to a physiologic (replacement) dose (~0.75 mg decadron daily) went smoothly. Below that, the body depends on the adrenal system to wake up again. We took about a month for that. She was off all steroids for about a month, then got sick and literally collapsed. A test of AM natural cortisol was done and showed about a half-normal level, when the stress should have caused a high or high-normal level.
Once the taper is down to a physiologic level, there (theoretically) shouldn't be any adverse effects on immune function, blood glucose, or other tumor enhancing effects, so going very slow at the end should be fine.
2. Mood and appetite issues might respond very nicely to medical cannabis. Some antidepressants (e.g., Remeron) might address both simultaneously as well.
3. Fatigue may just require time. If by chance he wants to drink caffeine, my cursory research suggests this should not be harmful and might even be helpful:
https://www.ncbi.nlm.nih.gov/pubmed/?term=glioblastoma+caffeine
Thank you Steve. He's been on the steroid for about 6 months and has been tapering off for a while. He just started doing 1mg every other day about a week ago and thats when he started feeling really bad. Things really went downhill yesterday. He couldn't walk and was majorly confused. My mother took him to the local ER and they did a catscan which showed major swelling and they gave him 4mg of the steroid twice yesterday. So, I guess all those months of tapering are down the drain now as we seem to be right back to where we started. Now we are waiting for MRI at UCSF on Tuesday.
ReplyDeleteIn our case, Avastin was far more effective at treating edema than high-dose steroids. It was going on Avastin that permitted a fast taper from 16mg/d to 2mg/d. Amazingly effective.
DeleteIt can help with symptomatic improvement, but pretty clearly does not extend overall survival in studies. Nor shorten it. But I think it can improve quality of life.
It can cause mental fogginess and other issues. In our case, I wish we'd gone to every 4 week dosing sooner, before adverse effects built up as blood levels increased.
There isn't much else in the standard medical toolkit for edema. Boswellia shows some promise. In animal studies, anti-inflammatories treat edema about as well as steroids. This would be a good argument for Celebrex, as it has anti-tumor properties as well as anti-inflammatory. It could be a small struggle to get any MD to prescribe it--you might even get it more easily from a primary care doc, with the "reason" being arthritis pain.
Thats interesting. I've been following your posts about your wife's edema issues. Is she still taking Avastin every 4 weeks? Was she having problems taking it at the normal dosing schedule? I have a feeling we are going to be talking about Avastin at his appointment with his NO this week.
ReplyDeleteShe became intolerant of Avastin. Mental fog, chronic sinusitis-like symptoms, muscle aches on exertion, and ultimately abdominal pain. The main reason for starting it was to treat the Opdivo-induced cerebral edema, so stopping it was not a huge loss, as the Opdivo had been stopped for a few months by then.
ReplyDeleteDue to progression, she's now on lower-dose decadron, 2mg/d, because she has better neurologic function with that. Probably some focal edema around the recurrence.
In retrospect, it would have been better for her to be on Avastin (at reduced frequency)while getting Opdivo, but doing so wasn't allowed on the Opdivo trial protocol.
Now we're looking at other trials, possibly Optune, and readjusting the cocktail.
Best of luck to you. Our scan today showed a slightly larger enhancement which they now think is a combination of radiation inflammation and tumor progression. He also has significant swelling. Shes recommending Avastin every 3 weeks. So, I guess we will see if he's able to tolerate it.
ReplyDelete