Hello. I have met a brain tumor twice. Once when it killed my mom in 2010 and now with my friend who is terminal.
I have found it difficult to find blogs dealing with end of life brain cancer. So I am hoping to find commaradrie here.
Do not misinterpret me as giving up hope. Not everyone wins the battle. Sometimes brain cancer does.
So is there anyone out there who has dealt with a terminal dx? You'll want to know that she has fought brain cancer for 5 years, done chemo, radiation, and had two brain surgeries. A gbm has taken over in her thalamus near her brain stem. It is inoperable and not possible to receive chemo.
In late November 2016 she was given 3 to 6 months. So we are 2 months in to the 6. She is under hospice care and lives with me and I care for her.
My questions are....is anyone dealing with the same thing? She can still walk and talk. She is still awake more than asleep. She does get moody. Her appetite is good. It does seem that she never sleeps deeply. She has struggled through constipation due to the opiates but I think I've figured it out. She claims the meds don't work and is at a level 8 pain. She'd be curled up and crying though....right? I try every 3 days or so to give her a quality of life day....like swimming or a movie or a restaurant. Otherwise it is bed to couch to shower to couch to bed.
Hope to hear from someone.
I have some experience with end-of-life care, though fortunately not with my wife and her GBM.
ReplyDeleteYou may have found a workable constipation regimen. But I've seen good results with Miralax. Senokot is a standard with opiates. Dulcolax can be a bit harsh with cramping, but often effective. Metamucil shouldn't be used alone here, but could be added to other agents. Magnesium may also be helpful. Of course, encouraging fluids can be a good idea.
She really deserves good pain control. You might speak with her doctor about OTC ibuprofen in addition to opiates. Medical cannabis might be a good option. Ancillary measures like meditation/relaxation, sunshine, walks, and music might be helpful. An antidepressant might also be worth consideration for adjunctive help with pain. Often, a combination of measures is what's needed.
Steve
Yes..Lots of senna and miralax in everything I can find!
DeleteShe is young and opposed to marijuana. Part of the reason is that some say the cbd will cure cancer. I understand it'll help with the pain. Do you know if it's rubbed into the skin? Is it a liquid? I haven't googled it.
I will see about an antidepressant. She isn't anxious or sad....more super tired and melancholy.
Thank you.
I 2nd the CBD/THC option. Not only will it help with pain but for me, taking the high dose of THC early evening (7-8pm) provides a very deep sleep. I take RSM THC level 6 oil and since I started taking this level, my deep sleep increased 1 to 2 hours each night as measured by my garmin smartwatch.
ReplyDeleteIn regards to terminal dx, I believe all GBM patients get one in months so most of us can relate to the dx. I have learned that there are levels to the standard GBM terminal dx and after 5 years your friend has fought a courageous against the odds battle. You did not provide who stated the GBM was inoperable. Not sure if you got 2nd/3rd/etc... opinions but I have learned that what one person says is inoperable, another sees a challenge. THis report from the virtual trials website talks about advances in brain tumor surgeries: https://virtualtrials.com/newsarticle.cfm?item=6224
I know the NO and NS teams at UCLA are using similar needles and procedures to operate on "non-operable" tumors.
Either way, the community is here for you
She really doesn't seem to sleep so I will investigate the cbd. How is it ingested?
DeleteThere is really no other options for her. It is terminal. I'm thankful her doctors aren't going to subject her to what happened to my mom.
The CBD oil I use is diffused with olive oil or alcohol and pumped into my mouth. From what I can tell there are no side effects. CBD oil by its self does not have the effects that THC does.
DeleteMarc
So like a teaspoon of oil into your mouth?
DeletePump spray. Each pump is about 5 mg. I do 6 pumps a day of the cbd and 2-3 pumps of thc
DeleteSo a family friend just told me about a suppository of thc and cbd oil....and a diety change...no sugar no carbs....will cure my friend. I don't believe it....I just want pain control....and I doubt she will agree to this suppository thing....do you knew about this kind of thing?
Deletehttp://www.greenbridgemed.com/latest-thoughts-on-rectal-administration/
Deletehttp://www.greenbridgemed.com/rectal-absorption-of-cannabis-revisited/
DeleteThanks
DeleteI'm sorry. My dad died of gbm and now a dear friend has it too. It's terrible. The only thing I'd add is we requested oxygen from hospice for dad. I wish we had it sooner than later, for comfort. Doesn't sound like your friend is in need, but it took awhile to get it (I think a week?)
ReplyDeleteGood luck to you.
Annie
I'll remember the oxygen.
DeleteThe high THC oil before bed really does help. My dad sleeps much better with it.
ReplyDeleteOk.
DeleteDo you rub it in the skin? Did your dad agree to it or did you just start using it?
DeleteMy husband said THC/CBD helped him more than anything else at the end. Said it helped with anxiety and pain. He took oil. Ativan also helps with anxiety and is available in liquid form which is absorbed in the mouth even if it's not swallowed. Fentanyl patch helped with the pain at the end. keep trying different things until you find what helps.
ReplyDeleteAbout the anxiety. I'm confused about that. What does anxiety look like? She is receiving 1mg every 4 hours in hopes of relaxing her.
DeleteFor my mom....anxiety looked like restlessness but my mom was different....way past out if it...mush brain. My friend can still talk and walk and see and eat.
My husband could communicate with me and expressed that he felt anxious/scared about things. He was really worried about having seizures at the end. The ones he had early on were partial seizures that he remembered, and didn't want that to happen again. anxiety and pain can share symptoms like restlessness and irritability.
DeleteI certainly can't dispute the number and enthusiasm of posts here about medical marijuana/CBD/THC for pain. I haven't any personal experience with it, but I believe the mostly glowing reports. If your friend is averse to using such agents, you might inform her that the CBD component does not get people high.
ReplyDeleteOther pain control options might include a morphine pump. Yet another option that can be used along with the morphine pump is ketamine:
Ketamine Protocol for Palliative Care in Cancer Patients With Refractory Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5017546/
I'd advise giving a copy of this article to the hospice physician. It provides a fairly authoritative "how-to" guide for those palliative providers who may not have much personal experience with ketamine.
She is on board and I explained it in those terms....that it doesn't make her a stoner.
ReplyDeleteGetting some soon. I'm in Colorado.
We are having a pow wow today at 1130am with two nurses. She is now on 270mg er morphine and is still in pain. I added the 40mg oxycodone every 2 hours. Still no quality of life. I will give them the print out of the pump and ketamine info. This can't go on.
ReplyDelete