Trial or other - 1267854

Hi phillydaughter,

I'm sorry to hear how weak your Mom is, but it's good news about the partial response.

I think the first question is whether she is weak from her chemo, or from the lung cancer. Probably the only way to try to determine that is to stay off treatment for a time and see if she improves. If she does, it is likely that alimta would be easier to tolerate; for most patients it tends to be one of the best-tolerated chemo treatments for lung cancer.

On the other hand, another typical option would be to watch and wait, resuming treatment if there is evidence of progression. Given your Mom's current weakness, that may be a good choice. Her current status would also determine whether her brain metastases could be treated.

Good luck. I hope she rebounds from her chemo very soon.

JimC
Forum moderator

The palliative care doctors and team are experts on helping people feel as good as possible. Unlike a med onc palliative specialists works solely to provide comfort care. There are some larger institutions that are offering palliative care at the time of an incurable dx to work hand in hand with the onc. I imagine you've had a chance to speak to them by now. I look forward to know what you thought. Until then below are posted a couple of links. Dr. Harman is the director of palliative care at Stanford and one of Grace’s faculty. She has given so much to Grace and me in particular, http://cancergrace.org/cancer-treatments/2011/10/26/why-not-palliative-…
http://cancergrace.org/cancer-treatments/2011/10/12/the-black-box-early…

All best,
Janine

phillydaughter,

Here is a word from one of Grace’s most gracious members, Debra/double trouble. We are so sad that Debra passed just 5 days ago and are still reeling from the loss but I think it would be helpful to know the part of her story when she went on hospice for a year with excellent results. We miss you terribly Debra.

She wrote December 8, 2013
“Oh gosh! I didn’t realize it had been so long since I posted! I lasted all of one week in the nursing home. I won’t go into details here, but suffice it to say it was a humbling experience.
I now have a studio apartment in an really neat area of town, but too far from family for my liking. Hospice has been great. I’m on oxygen only 2 liters and I can take the cannula off when I’m just sitting around. I do get short of breath very easily though.
I haven’t tried to walk much yet but I’m all set up with a walker with a seat and very portable little oxygen tanks and I even have a portable converter which is awesome. It will plug into a car lighter, an airplane… I love it, but much heavier than the portable tanks.
Thanksgiving was wonderful. I had my Granddaughter with me and I taught her how to cook everything. She did it all herself, except the turkey...” http://cancergrace.org/topic/new-new-plan/page/29/#post-1260947

I don’t want to overstate what your mom’s possibilities might be but I want you to know one of the best changes in medicine is the focus on comfort care, people are living longer and better with the help from some pretty great experts.

Janine

Only over the last 6 months or so have I had the benefit of a palliative care/symptom management specialist working with my practice. Though that's part of what I do, I think having her working with my clinic has helped me and my practice.

You simply can't be an expert in everything. I focus on lung cancer and GU oncology, and though I may be competent in managing cancers outside of that range, there is a value to having a lot of experience and expertise. Someone focused on the latest molecular markers and anti-cancer treatments can't also be focused incredibly on symptom management, even if they try to cover that base as best they can. My experience has been that it's very helpful to have someone entirely focused on maximizing comfort and minimizing symptoms, working along with me and the other docs focusing on anti-cancer treatment decisions. We are more complementary than redundant.

As for whether to pursue more treatment, I think the key question would be whether it's possible to thread the needle with single agent Alimta (pemetrexed), perhaps after a break from treatment, and still get tumor shrinkage without prohibitive side effects, but having a patient's life destroyed by treatment is not helpful, even if the cancer shrinks some. There is no value in living a little longer only to suffer terribly during that time.

Good luck.

-Dr. West

Hi Philly daughter,
I'm glad to hear your mom is feeling and thinking better. It's amazing how radical life changes without chemo for so many. What a relief it must be for her.

I'll make sure a faculty comments.

Depending on your meaning of intense but radiation does cause it's share of inflammation and uptake even several months later. The inflammation in turn can cause lots of paid.

It's reasonable to move back into chemo after a break though that's a call for your mom and those caring for her. Alimta shows a lot of efficacy for many on its own and will most likely be easier on your mom physically. Since she had only 8 gy of radiation it may be possible to give more in that area if that's the only place that's causing symptoms then move back to alimta only when needed for a next option.

I know everyone is enjoying the peace from the comfort she's feeling now.
Good luck,
Janine

It's best addressed by the PARAMOUNT trial, which you can read about here:

http://cancergrace.org/lung/2012/07/13/context-for-paramount-os-benefit/

Good luck. I hope that helps.

-Dr. West

I have some experience with palliative care in addition to oncology so I will add my 2 cents.
I agree with Dr. West, if treatment can be continued, the best option would be maintenance Alimta. Usually single agent is well tolerated compared to the doublet with carboplatin, but some patients do complain of excessive fatigue.
Other options such as Taxotere should be avoided due to excessive toxicity. Tarceva single agent, although less toxic than chemo, usually does not do well in patients with KRAS (+) tumors.
When someone's condition deteriorates due to tumor progression or treatment toxicity, it is better to give them a break. Sometimes that break is permanent, sometimes it is transient. During this time they can benefit from palliative care, particularly if symptoms like pain are an important issue.
Palliative care is a very good option for our patients, usually done at home, it intends to maximize comfort and minimize the "medicalization" of the patient (frequent trips to ED or doctors office). Palliative/hospice nurses and physicians follow these patients closely and usually work along their oncologists. If the patient's performance improves, restarting treatment is always an option. Hospice care is a 2 way road and I have used it to provide temporary relief to my patients when their performance drops to levels that are not compatible with active therapy, if they are bound to decline and not improve, they are with the right team already.