My mom was diagnosed with stage IIIb squamous cell nsclc in 2006 (age 72 then). After one round of chemo, she progressed to stage iv in 2010 and has been stable since, with two more rounds of chemo and, most recently, nine months of weekly navelbine, which she tolerated well. Slight progression in the last couple of scans, until about a month ago, when she began to lose weight and experience extreme fatigue, intractable nausea (with little vomiting), left-sided weakness, and some confusion. She was admitted two weeks ago and MRI of the brain showed two "medium sized" lesions and at least a couple of "tiny ones." She's being treated with WBR (10 treatments), and, after a week in acute care, was moved to a rehab facility to try to gain some strength back. (She hasn't been able to get out of bed by herself for two weeks.)
My question is what to expect - I know what the median life expectancy is but also that those are just numbers and not actual people. But her continued fatigue and confusion don't seem to bode well. I just want to try to be prepared.
Reply # - November 2, 2015, 10:02 AM
Hi Elle,
Hi Elle,
I'm very sorry your mom is going through this trauma. It's impossible to say what will happen next and only time will tell but WBR is known to cause this type of extreme fatigue that lasts anywhere from a couple of weeks to a month or so. Most people eventually regain their strength and many do well moving forward. The answer given to a question like your's is often "hope for the best and prepare for the worst". It also happens to be very difficult position in which to be.
On one hand she needs to recover sufficiently to continue treatment and on the other hand treatment must be given to keep the cancer at bay. If her cancer is indolent then it's possible to be without treatment for longer periods of time than if it's become aggressive.
Unfortunately many outcomes "depend" on another and waiting is the only way to find out. It's truly very difficult for all involved. I hope your mom is comfortable in the meantime and you and she have good support network. Let us know if you have other questions.
All best,
Janine
Reply # - November 4, 2015, 01:42 PM
Thanks Janine. I got a
Thanks Janine. I got a message from her radiation onc today (hard to connect "live" as I'm working and in a different state). He said she's doing better - leg and arm weakness much improved. However, he noted that she is still extremely tired. He's tapering off her steroids and will see her in a month, and she'll have an MRI before he does. She's to continue her physical therapy.
My challenge is that I'm quite far from her. I want to be with her as the end approaches, but I don't know and am not being told how to determine when that might be.
Also, she's still in a rehab facility because she can't get out of bed by herself and essentially needs around-the-clock assistance. My brother, who lives with her, is disabled and not up to that task. I feel terrible that she's in the facility but don't know what choice I have. She might be better off in a hospice situation but no one is mentioning that or offering.
Any guidance would be most appreciated.
Reply # - November 4, 2015, 02:58 PM
Hi elle,
Hi elle,
I would recommend that you contact hospice in her location so that they can evaluate her and the possibility of qualifying for hospice services. It's often said that most people do not call in hospice early enough, and I've seen that personally. Even if she doesn't currently qualify, they should be able to make recommendations for her care. My experience with hospice/palliative care staff has been extremely positive.
JimC
Forum moderator
Reply # - November 9, 2015, 02:59 PM
Thanks Jim. Her oncologist
Thanks Jim. Her oncologist and radiation oncologist recommended hospice. Hospice needs a sign-off from the rehab center physician, so I called the social worker there today. She called me hours later and said they'd discussed the request at a meeting and that the physical therapists said she's doing slightly better with the PT so they were surprised about the request, and she asked me if that is what my mother wants. (I did discuss it with her, but she is pretty confused and I can't be sure she fully understands all of our conversations.)
Anyway, the rehab center social worker told me - contrary to what hospice told me - that she can't stay there if she has hospice. She said "she has to go home." She then explained that Medicare won't pay for both the rehab center and hospice, so she could stay, but I would have to pay for it myself.
It's not possible for her to go home. She doesn't have a reliable caregiver there and needs around-the-clock care.
I'm fairly beside myself and am confused about why I'm getting different answers from the rehab facility and hospice. I pushed back with the rehab place and said I at least want a hospice assessment.
Does anyone have any insight into this - I'm finding it all difficult to navigate and feeling quite alone.
Reply # - November 10, 2015, 06:11 AM
Elle,
Elle,
I think the problem is that the goals of rehab and hospice may be viewed as inconsistent, although I don't think that would universally be true. Perhaps you could contact hospice again to see if there are any inpatient hospice or palliative care facilities which could care for your mom. When it became impossible for me to care for my wife at home, I brought her to the palliative care unit at our hospital (which also doubled as the hospital's hospice unit), and they were wonderful.
I hope you can find something similar in your area.
JimC
Forum moderator
Reply # - November 10, 2015, 05:30 PM
Thanks. The upshot of my
Thanks. The upshot of my asking for the hospice referral is that she's being kicked out of the rehab facility. They're looking for a nursing home placement. Hospice will go there to care for her. I hope against hope that I did the right thing. I hope the nursing home isn't worse than the rehab facility. But mom is very glad she won't have to do physical therapy anymore.
Reply # - November 11, 2015, 03:25 PM
elle,
elle,
It's always tough to choose a facility, as it's hard to know how well they care for patients until you have some experience with them. But I think you're making a good choice, as the level of moment-to-moment care that you can provide at home, even with hospice making visits, is far less than what a round-the-clock facility can offer.
From personal experience, my wife's palliative care staff at first wanted to try to teach her (and me) ways of coping with everyday tasks so that she could go home. But my experience in trying to care for her at home made it clear that having a nursing staff present at all times was undeniably what she needed.
JimC
Forum moderator
Reply # - November 15, 2015, 05:18 PM
Hello again. My mom was
Hello again. My mom was transferred on Fri to another facility. I called before she arrived at the new facility - she was supposed to be given a long term care bed - and I asked that hospice be brought in right away. (I live far from her and won't be able to fly back there for another week. My brother, who lives in her house, is not reliable so she can't be home with him). I got something of a runaround - the admissions person said mom was being then an SNF bed at first (so no hospice because Medicare covers only one, not both). I think this is because the facility will get more from Medicare than Medicaid so they don't want to rush the switch.
At any rate, being far away is breaking my heart. I thought if hospice went in I could get a better idea of her status. But, absent that, I'm hoping some of you with experience can offer some advice.
Tonight on the phone she asked me to come get her out of there. She said she's not in pain and they're not mistreating her but she can't live like this. She said she just wants to go home. I asked if she feels a little stronger, like maybe she could go home, and she said no. Then she said - like she's been saying for a few days - that she wants to die.
My question is this: is the language about "going home" possibly related to her being ready to go? Although it would be a financial strain, If I have to I'll try to get her transported to where I am and hire 24-hour nursing care in addition to hospice. But I don't want to overreact and put her through a 24-hour car ride to come lie in a bed that's not even in her home if it's possible that I'm hearing the effects of the brain mets and the wbr and the OxyContin.
Hope this makes sense - I'm so full of anxiety I can barely think straight. Any advice is welcomed with gratitude.
Reply # - November 17, 2015, 03:25 PM
Elle, Hello. I'm so sorry
Elle, Hello. I'm so sorry that your mom and you are in this situation. I don't know if you might get better recommendation from those at the "lungevity" forum. At the moment we are mostly fielding treatment questions and don't have a contingent of people with cancer or caregivers contributing and I'm very lucky not to have been in this type of situation before. My initial thought is to continue to call the hospice group and lean on them for answers.
I hope hope you find answers that are good for your mom.
All best,
Janine