My mom- an 81 year old female was diagnosed nsclc squamous t2b m1b bone March 2, 2015.
Declined all treatments/chemo, except radiation on initial bone mets in pelvic bones and femurs - she does not want to prolong her experience.
Declining quickly, in home hospice care (after a week in the hospice center to get the pain meds dialed in) since April 13, 2015.
Weakness has become extreme the last week and she can no longer ambulate at all.
New bone mets/pathological fracture in shoulder suspected this week, moved back to hospice center yesterday for pain management intervention.
It is not yet determined whether or not she can come back home or will stay in hospice center.
She's not actively dying, just in extreme pain upon the slightest movement and 100% bedbound. You can barely touch her without her screaming.
Question:
As pain during transport for evaluation and testing, effectively renders treatment out of the question there is nothing to be done about this fracture, am I correct?
Is palliative sedation coming sooner rather than later? Would they do this during treatment then reverse it at this stage in her disease?
All I read online is surgical intervention or radiation that would require trips for doctors, mapping, ambulance rides daily, etc. We are fairly rural and the bumps in the ambulance and the jostling almost kills her. I can't imagine her going through all that handling for radiation during this stage of her disease.
Is there any hope of decent pain relief other than palliative sedation?
I would really like to bring her home for her last days/weeks but unless I can move her for cleaning without her screaming I just can't do it emotionally. A nursing home is our alternative and I am trying desperately to avoid that.
I know I need to speak to her hospice physician- she comes through very early (like 4:30 am) and I am unable to catch her until Monday morning.
Just wanting to hear some thoughts here about our situation.
Thank you for existing.
Reply # - May 23, 2015, 09:34 AM
Hello bud54,
Hello bud54,
Welcome to GRACE. I am sorry to hear of your mom's situation and the great pain she is experiencing. Given her stated preference that she does not want to prolong her experience and resulting lack of anti-cancer treatment, the goal is to make her as comfortable as possible. Without treatment, her cancer has and will continue to progress, likely causing other painful/uncomfortable symptoms. What is unknown is the time frame over which this will happen, but without treatment it's more likely to be relatively brief. As you say, transporting her for evaluation and treatment would be very painful and would only provide the possibility (not certainty) of temporary pain relief. Surgery in particular would require a period of recovery from the effects of the surgical procedure, and that in itself would likely be painful.
Her hospice staff should be able to recommend the proper amount of pain medication required at any given time, and if it proves feasible to treat the fracture and her pain lessens, they would be able to reduce her pain medications accordingly.
I am so sorry that you and she and your family are facing these difficult days, and my thoughts will be with you for comfort and peace.
JimC
Forum moderator
Reply # - May 23, 2015, 11:00 AM
Thank you so much for your
Thank you so much for your kindness in responding.
I was able to catch a physician today (yay holiday substitute doctor schedules) and he agreed there will be no further testing or treatment. They are increasing her steroids and adding ibuprofen as well as increasing the dosage of her her morphine cocktail in hopes that that will do the trick. Apparently ibuprofen can be very effective in dealing with bone pain and it has worked well for her in the past so fingers crossed.
They will also be allowing her urinary catheter to remain in place when she returns home which in actuality will eliminate 90% of my management problems. I guess they don't suggest that until things get dire due to infection risks but it sure is the answer to the question as far as getting her up and down multiple times each day.
At this point it seems certain that she will never be leaving the bed again which in one respect is of course very sad, but eliminating the possibility of a fall is an enormous load off of my mind and at this point I take comfort where I can find it.
Thank you again for your kind reply.
Reply # - May 24, 2015, 06:05 PM
You have all my sympathy with
You have all my sympathy with regard to your situation with your mother. Despite the direness (is that a word?) of her diagnosis, I think she is fortunate to have you caring for her and working to manage and minimize her pain. At some point, that is an incredible gift. My best wishes for you both in this difficult time. Keep your chin up--you're doing as much as can be done.
Nan
Reply # - May 25, 2015, 03:08 AM
Thank you SoCal.
Thank you SoCal.
I am happy to report that the med changes helped remarkably.
Yesterday she was able to raise and turn her head as well as sit up a bit to feed herself, so that was a happy day.
Not that there isn't another crisis just around the corner but for now it appears she will be coming home tomorrow, and home is always best. I do hope to be able to keep her there for the duration.
Thanks again for all the support.
Reply # - June 6, 2015, 11:23 AM
For closure and to help
For closure and to help others experiencing similar circumstances my Mom died this morning, June 6, 2015 at her home with her family by her side. It was a very easy, peaceful death.
NSCLC diagnosis to death (with no treatment aside from palliative radiation) was just over three months.
Very rapid decline with many metastases in many areas, some even visible externally.
God bless hospice organizations and the people that staff them and many, many thanks to this site for the plethora of information that helped me a lot over the past three months.
Reply # - June 6, 2015, 12:04 PM
So sorry to hear of your Mom
So sorry to hear of your Mom's passing but glad she was home and passed in peace. Hospice can be a Godsend and glad you had a good experience with them. May you all find comfort in your love and memories.
Take care, Judy
Reply # - June 6, 2015, 08:45 PM
I am sorry to hear that this
I am sorry to hear that this terrible disease has taken your beloved Mom from you. As Judy said, it is good that hospice was able to help make her passing peaceful, and I wish you and your family peace and comfort in the days ahead.
JimC
Forum moderator