Hi everyone,
I have been following this forum for the past year. My mother is 63 and was diagnosed with stage iv, mets to the brain 13 months ago. Currently she can walk around fine with a walker, feed herself, and can go outside to the park if we bring her in a wheel chair w/o any complications. Can't drive and can't shop on her own. Can still make her own food.
Oct 2015 - Tarceva stopped working and has been off it for 4 weeks and looks and feels better than any time she had in the past 6 months.
Sep 2015 - fluid in lungs. Surgery to clear it.
Sep 2015 she had gamma knife radiation on the brain and that really affected her cognitive ability to where she forgets things easily and doing basic math gives her headaches.
Nov 2014 - Started Tarceva
Oct 2014 Brain surgery to remove mass putting to much pressure on her brain. 2 weeks of whole brain radiation
Her oncologist recommended that she enter a clinical trial that is in phase 3 for those when tarceva stops working and will be starting in the next few weeks. Not sure if this is the right step - my mother told me she doesn't want to go through the feeling of how she felt after the gamma knife radiation, but at the same time wants to live as long as possible.
Her oncologist told me that when Tarceva stopped working is the time to put her on Hospice but she never even discussed hospice with my mom when tarceva stopped being effective and recommended the new clinical trial. Her primary care doctor told us we should look into hospice. I have read some articles on here and by Dr. Atul Gawande and am leaning towards Hospice care.
If my mom looks and feels better without any drugs besides antibiotics and pain medication, should she go into this trial? Any suggestions? Don't really have anyone else I can talk to about this as Hospice is seen as negatively.
Reply # - November 9, 2015, 08:16 AM
Hi tallpaul,
Hi tallpaul,
Welcome to GRACE. I am sorry that you and your mother are facing these difficult choices. The issues are made more complex by the question of why she feels better now. Is it because she ceased Tarceva and/or finished her radiation and is now free of the side effects of those treatments, or is it the result of treating the brain mets and clearing the fluid?
Ultimately, the decision is hers and her wishes must be respected, but in making her decision she needs to be as well-informed as possible. Perhaps her oncologist can specifically describe the likely side effects of the trial therapy or other possible treatments. Most likely he will tell her that none of those treatments will affect her the way gamma knife did.
As I'm sure you've read, a consultation with hospice would be better sooner than later, so that all options are clear and so you have someone to contact if that decision is made.
Good luck with the path she and you choose. You will remain in our thoughts.
JimC
Forum moderator
Reply # - November 9, 2015, 08:48 PM
Thanks Jim.
Thanks Jim.
My family, my self included keeps forgetting its ultimately up to my mother on whether or not to continue medication.
Should I be worried if only the Primary Care Physician is the one who recommended hospice to us?
My mother's oncologists and radiologist have not once mentioned it except at the beginning. It seems like its a forbidden topic for them to talk about.
Reply # - November 10, 2015, 06:02 AM
If they had not mentioned it
If they had not mentioned it at the beginning, I might think that they are the kind of doctors who are uncomfortable raising the issue, but since they did I would expect that when they feel it appropriate to do so they will discuss it. That might not be true if over time they have gotten the impression that it would be an unwelcome topic (usually based on family, rather than patient, attitudes).
It's a difficult thing to do, but perhaps you want to raise the issue with her cancer doctors. They are best equipped to judge whether further treatment would be advisable. It might be easier to frame the question in terms of a choice between further anti-cancer treatment and "comfort care", thus avoiding the hot-button term hospice. Her doctors will understand what you're talking about, and can help guide your mother and you toward a decision.
Continued good wishes for comfort and peace.
JimC
Forum moderator
Reply # - November 10, 2015, 09:06 PM
Thanks Jim. Your opinion is
Thanks Jim. Your opinion is very much appreciated.