I suffered a seizure last Sunday which landed me in ICU/PCU for four days until a decision was made to begin WBR on 12/26/12.
The MRI performed upon my arrival to the ER revealed at least a dozen lesions in my brain ranging in size from small to 2.0cm
The larger one, with all of the associated swelling, was likely the cause of the seizure and has probably seriously impacted my vision resulting in blurriness and double vision. Initial consultation with a Neurosurgeon had him suggesting surgically removing the single 2.0cm lesion as it was in an accessible spot and his opinion was removing it and treating the remaining 10-12 lesions with WBR was a reasonable approach.
Once examined by a Radiation Oncologist, he accessed that my situation did not present an emergency demanding immediate surgery. While the edema is significant, the midline remains straight and my radiation Oncologist feels that WBR is the proper approach immediately with follow-up and possible intervention with radiosurgery procedures utilized if individual lesions need individualized attention following WBR.
I have decided to go with the non-surgical, WBR approach and will begin treatment on Wednesday.
I have been placed on new meds to help control the seizures and sweliing prior to beginning WBR.
I get 4 daily doses of Dexamethasone @ 4mg every 6 hours and Keppra @ 500mg (anti-seizure) twice a day at 12 hours intervals.
I suspect this regimen will continue throughout the entire WBR treatment.
I am having very little luck sleeping through the night (or even just a couple hours at a time)
I am trying Ambian @ 5mg at 10pm bedtime and following that up with a second dose of 5mg in the wee hours of the morning, but have not gained results.
Any ideas out there for me to try?
Maybe the doctors could add their vast experience in this area as I am certain it is a common dilema
Reply # - December 25, 2012, 09:39 AM
Reply To: Dexamethazone – sleep impossible
I can't give you any medical remedies, but what I did while using dex was just sleep when I felt like it and not try to keep a schedule. Unfortunately, if you're time committed in any way, that could be a problem. You can also find out when you'll start weaning down and off the steroids. Wishing you the best.
Take care, Judy
Reply # - December 25, 2012, 10:26 AM
Reply To: Dexamethazone – sleep impossible
I'm so sorry you can't sleep not to mention the ordeal of seizures and the hospital stay. It's good that you can put off surgery hopefully you'll not have to have it at all.
I wouldn't want to guess as to what you might try. Dr. West will check in today and hopefully will have an idea.
I know with my husband there are meds that make him very sleepy. Have you been given anti nausea meds I know they put my husband to sleep. I'm sure you know tips about not taking caffeine like tea, soda and coffee. How about a nice lunch of chamomile and turkey?
Have you given your on call physicians a try?
Hoping for very best to you,
Janine
Reply # - December 25, 2012, 01:32 PM
Reply To: Dexamethazone – sleep impossible
As you suspected, this isn't a rare problem, but that doesn't mean there's a good answer. There are many medications for sleep, and this issue of insomnia and potential treatments is described here:
http://cancergrace.org/cancer-treatments/2010/02/09/getting-your-z’s-with-cancer/
However, there's really no more of a science to it than trial and error with the various medications, and then cutting back as rapidly as feasible on the steroid dose, since it's a notorious culprit.
I'm sorry you're experiencing this, and I suspect it's cold comfort to know it's common. Good luck.
-Dr. West
Reply # - December 26, 2012, 06:28 AM
Reply To: Dexamethazone – sleep impossible
Thanks for the responses Dr. West, Janine, and Judy.
Judy's voice of reason made a lot of sense. I simply need to "listen" to my body and curl up with a blanket when it is ready to nap rather than telling myself I will sleep at certain times. With that in mind, I was able to grab a couple 1 to 3 hour "cat naps' yesterday. Not great, but getting some rest.
In the evening when I do go to bed, I take 10mg of Ambien which is not knocking me out (sure used to) but it is relaxing me enough so that my restlessness is not associated with anxiety over not sleeping.....does that make sense.
Oh well, a few hours from now I will be down at the radiation oncology treatment center getting snapped into my mask for my first WBR treatment.
I have a bit of concern. They completed the simulation treatment before I was discharged from the hospital last Thursday. (CT with fabrication of scull holder fixture/cap)
However, I have not had an opportunity to actually speak with the radiation Oncologist who is doing my treatment plan as he was out on vacation last week. I assume I will get to spend some time with him today before starting the treatment so that I can get a little further clarification on several issues.
I am referring to things such as Hippocampal-Avoidance and/or spreading out the treatment period. Are either one of these issues even applicable to me with numerous mets (probably over a dozen) in my brain and all of the other issues going on throughout my body? My reading leads me to believe my time left is likely rather compressed now and that worry about cognitive impairment is more logically reserved for those expected to survive longer term.
One other nagging concern is it has been months since I was actively being treated with chemo and I am developing a nasty cough and pain from my lungs. Gemcitibine is what we are planning for following WBR but my Onc tells me we need to wait until after WBR due to Gemcitibine not being compatible with radiation.
Reply # - December 26, 2012, 09:24 AM
Reply To: Dexamethazone – sleep impossible
Sorry to hear about these latest developments, and particularly about the seizure which must have been frightening.
Dex is ruinous to sleep, and I agree with Judy that you just have to sleep when you can. I found Zopiclone helpful for preventing those ghastly 4am starts. I also tried never to take the dexamethasone later than lunchtime, assuming this is compatible with your dosage instructions. Be prepared for a lot of manic activity and pacing up and down!
I hope you get a chance for a proper talk with the radiation oncologist today. Good luck with the treatment.
Reply # - December 26, 2012, 03:58 PM
Reply To: Dexamethazone – sleep impossible
I think you're asking fair questions about hippocampal avoidance and a longer treatment course for WBR, but I also think that these are questions that need to be discussed with the actual radiation oncologist involved. Neither of these concepts is categorically irrelevant, but they aren't the standard approach, and it's appropriate to discuss the pros and cons of the various approaches.
Yes, it's true that we really want to avoid giving gemcitabine too close to radiation, but there's no right answer to how long of an interval to wait for. I favor giving a couple of weeks between them, not months, so I don't think that's enough of an interval to really be a major issue in terms of the cancer progressing.
Good luck.
-Dr. West
Reply # - December 27, 2012, 03:04 AM
Reply To: Dexamethazone – sleep impossible
.Thanks Doctor West!
My radiation Oncologist is planning my duration of treatments over 10 sessions and feels comfortable with me starting my chemo 1 week following completion of the WBR.
First session of WBR went extremely smoothly, with no side effects noted.
My vision is compromised and hoping to see beneficial results following treatment. At this point, no one has fully explained the involvement (or lack of involvement) of the occipital lobe. I understand extent of involvement there is going to be a determining factor regarding extent of improvement I can expect.
I am trying to stay positive.
Thanks again for your continued support.