Stage 4 lung cancer with brain mets - 1261966

heidi1972
Posts:4

Hello, my mother was diagnosed after having a seizure in Sept 2013 with stage 4 non small cell lung cancer with brain mets, she is 69 and was a smoker for many years. as far as we know she has/had 8 to 10 lesions in the brain, she completed WBR in Oct and handled that well, then started chemo in Nov on Alimta and Carboplatin. she had a MRI in Dec which showed one lesion in the brain had dissappeared and the rest have shrunk 70 to 80 percent. The Lung scan showed improvement on the growth in her lung. right now she has finished only 3 cycles on the chemo and the dr has given her a "break" due to the chemo has kicked her butt literally, he seems to think its the neulasta shot she recieves, He would like to keep her on maintenance Alimta till????but my mom is up in the air about the decision cause she doesnt want to live out what she has left feeling like she has on chemo,she is due to have another chest scan Feb 10 and we are to see the dr after that and we will go from there, i asked him at the last appt how much time is she getting from doing the chemo he wouldnt give an answer at first but i said ok give me the statistics he said 8 mos to a year. Even though tests look good so to speak she is ready to throw the towel in, the dr has said sometimes the physical /emotional ourweighs the chemo and what it is treating and he feels she is at that point. that is why he is giving her this break. i guess im not looking for a so called answer would like some feed back from others or maybe something i may not be asking or not aware of ,i just want to help my mom make the best informed decision. any feedback is appreciated.

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Reply # - February 4, 2014, 07:29 AM

JimC
Posts: 2753

Hi Heidi1972,

Welcome to GRACE. I am sorry to hear of your Mom's diagnosis, but encouraged by her good response to treatment.

One thing that oncologists don't do well is predict how much benefit a patient will receive from treatment. Some patients respond well and others don't, so even if the median works out to 8-12 months, half the patients will do worse and half will do better, sometimes much better. The fact that your Mom has responded well is a good sign.

As far as maintenance, there is still no consensus on its value. If you search this site for "maintenance therapy" you will find many discussions. Here are a few examples:

http://cancergrace.org/lung/2013/03/09/goldberg-maint-rx-vs-rx-break/
http://cancergrace.org/lung/2013/03/13/sandler-maint-rx/
http://cancergrace.org/lung/2013/02/27/bonomi-on-maint-rx/

One thing your Mom should know is that maintenance with single-agent Alimta is often much easier to tolerate than the platinum doublet she has been using. Alimta is known as one of the most tolerable chemo agents, although of course there are always individual patients who have a bit more difficulty than average.

JImC
Forum moderator

Reply # - February 4, 2014, 07:58 PM

Dr West
Posts: 4735

I don't have much to add: maintenance chemotherapy can prolong survival, but it needs to be balanced with tolerability. Single agent Alimta (pemetrexed) may well be easier to tolerate than a multidrug combination, and it shouldn't be necessary to give Neulasta (pegfilgrastim) with it.

It's not possible to say how long any individual's survival is improved by treatment, but months to even beyond a year is absolutely possible.

Good luck.

-Dr. West

Reply # - February 6, 2014, 12:14 PM

heidi1972
Posts: 4

Thank you Dr. West and Jim for your response, i guess im at a loss, i did ask her oncologist if the neulasta was necessary with the maintenance and he said yes.... also i have been reading some of the posts and searching online, does it really make a difference for someone with her type of cancer to take the chemo now or a wait and see approach? i mean a difference in its outcome or survival rate? i know she is confused as to what to do, this week since she has been on the "break" i can semi see her old self back when i come home she is actually up not laying in the bed, then i have to remember she is still sick even tho its nice to see my old mom back. i have a feeling we are going to be in the same boat after she starts up on the chemo again, my advice to her was try the maintenance and the neupogen shot instead of neulasta and if you feel like you did before your decision will be a little easier to make. i guess i just need to know if we have more options. she is due to go in for the lung scan on Monday and we see the dr. the following Thursday to see how the results aer and we will go from there.

Reply # - February 6, 2014, 12:53 PM

catdander
Posts:

Heidi, These decisions are made in order to balance keeping the cancer in check for as long as possible while maintaining as much quality of life as possible. My husband numbered the days when he started feeling better after surgery then concurrent chemo/rad. I saw the difference too and was so joyful to come home from work to see him setting on the back porch. You must feel the same way too.

Each person is different in side effects, efficacy, and the feeling that life is still happening. A good doctor who takes all these into consideration and gets to know his/her patients is the ideal person to ask for individual advice on how to mix the ingredients available. Too there's no others who can add to this input than those who spend the most time with the person with cancer. I'm lucky to be able to speak openly with my husband's cancer care team.

Balancing longevity with quality of life is too personal a recipe for someone over the internet to give specifics about what one may need. I've spoken to his oncologist as well as his oncology and radiation nurses about this to make sure they understand my concerns and wishes. For them it was an easy reassurance for it's what they want for all their patients.

I hope this makes some sense,
Janine

Reply # - February 6, 2014, 01:28 PM

cards7up
Posts: 636

I'm not a doctor or moderator, just a lung cancer patient. I had carbo/alimta and it kicked my butt too! I was 56 at the time. I just had it again and it still kicked my butt at 59. Alimta is well known for overwhelming fatigue.
If you're mother is feeling she wants no more chemo, then that should be her choice. Though I was stage 3A, I finished my first line tx and did no maintenance. I had a recurrence 2.5 years later. When or if you're mother progressed, no one can know. But she can forego the chemo/maintenance until she gets to that point.
Take care, Judy

Reply # - February 6, 2014, 09:26 PM

Dr West
Posts: 4735

The best evidence is that if people get the treatment now or a few months from now, people end up doing the same in terms of survival. The only clear value of maintenance therapy is that it ensures that the people who receive it get the intended treatment, but some people who don't do maintenance therapy never go on to get the treatment.

Missing the subsequent treatment option is quite unlikely if patients are followed carefully, so I don't hesitate to offer and even recommend a break for my patients who need one. In fact, today I strongly recommended a treatment break for a patient who is responding to chemo, actually two cycles into maintenance therapy, but whose blood counts are so low that it's becoming less safe than I'd want it to be. I think she'll do better with resuming chemo after a break, and I'm confident that as long as I'm following her closely, we won't miss any opportunities to give her further treatment that can help her.

Good luck.

-Dr. West

Reply # - February 9, 2014, 07:31 PM

heidi1972
Posts: 4

Update...today I noticed my mom didn't seem right. Very quiet at first then she was almost hallucinating.. Saying she saw my daughter standing in the living room and she wasn't. I called the on call Dr they advised to bring her to the ER of course the Cat scan shows swelling in her brain the ER doc says it'd worse than when we started. They admitted her and we wait to see what her oncologists says. I'm kinds pissed to be blunt we saw him less than 2 weeks ago and we said her head is bothering her.. It'd nothing to sorry about is what we got. Really. I know they don't have all the answers but don't be so quick to disregard the patients either I knew something wasn't right. So now not not sure what steps r next. No one should have to live this way. When does Hospice step in ? I couldn't even get her to walk its like her left side had paralyzed too .

Reply # - February 9, 2014, 07:38 PM

JimC
Posts: 2753

Heidi,

I'm sorry to hear about your mom's latest complications. Of course you will learn more from her oncologist, but when there is swelling in the brain it is common to receive steroids (typically dexamethasone aka Decadron) which can provide some relief from symptoms quickly.

JimC
Forum moderator

Reply # - February 9, 2014, 09:12 PM

Dr West
Posts: 4735

I'm sorry about this complication. Yes, the most common next steps are steroids and radiation, and this very often leads to a significant improvement in or resolution of the symptoms.

Good luck.

-Dr. West

Reply # - February 10, 2014, 05:50 PM

heidi1972
Posts: 4

MRI showed bleeding in the brain. Mom still seems confused about some things and very angry yet some stuff makes perfect sense. The oncologist says there is nothing more to do and should consider hospice. We will talk more tomorrow. Anyone have experience with this? Does this happen even with treatment the brain bleeding?

Reply # - February 10, 2014, 08:27 PM

JimC
Posts: 2753

Heidi,

I'm very sorry to hear of this development. As Dr. West has said:

"If severe enough, neurosurgeons could be consulted to do a surgery to at least relieve pressure in the skull, and potentially remove an area of bleeding. This is such an individualized situation that it will be necessary to work with her doctors on a very individualized plan -- there is no rule book of standard plans to follow in this setting, I'm afraid." - http://cancergrace.org/forums/index.php?topic=10395.msg83116#msg83116

In the same thread, Dr. Pinder added:

"I agree with Dr. West that this situation requires an individualized response. Bleeding can sometimes occur even though the cancer has responded/is responding to treatment. In addition to the options Dr. West described, sometimes patients are watched closely and treated with steroids to decrease the swelling."

I hope your mom's doctors can help her find comfort.

JimC
Forum moderator

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