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My Mom's Story

Posts: 2
Joined: Nov 2011

My Mom has severe stenosis of the spine and was going in for pre-op surgical testing when they discovered a small "spot" on the lower lobe of her right lung. She then proceeded with the usual battery of tests, i.e. PET, needle biopsy, etc., which proved positive for lung cancer. Surgery was scheduled to remove it, and upon surgery, they discovered the 25cm mass on the lung that they originally expected, plus discovered that her right lung was "peppered" with cancer. They deemed the surgery as "inoperable," and closed her back up. At that time (June of 2011), she was given an estimate of 1-2 years, expecting that the chemo would be effective.

After rehab at transition (1 month), she came home and started chemo (carbo-plat and gemsar (sp?), and completed six rounds. Earlier this month, she had another PET and it determined that the growth had matured (10 mm), and that she also had cancer in her spine. In other words, the chemo has not worked. We met with her oncologist and he said there were two options: 1, discontinue treatment, whereby survival time would be approximate 1-2 months, or, try Tarceva and see where that leads (he told my Mom, "I would recommend the Tarceva if you were my mother). He felt that doing the Tarceva orally, at home, would make her feel like less of a "career patient."

I've done some research on Tarceva and learned that it, at best, is a "band aid" and usually gives 20-25% extension of time with this disease (NSCLC). With an average life expectancy of 8 months from diagnosis to death, this means another two months or so, if we're lucky.

In the meantime, her back pain has increased substantially in the last two weeks, whereby she can't walk, and can transfer from bed to potty chair, bed to wheelchair, etc. only with tremendous assistance from me and my father... I can hardly bear to watch this wonderful woman of 77 suffer with so much pain.

I am the primary caregiver, and she is currently on 125 mcg of Fentanyl/72 hours, 8 mg Dilaudid q4, with Baclofen and Oxyprozone as needed to help reduce swelling in the back due to the stenosis, etc.

My questions are many and are haphazard at best... What can I do, if anything, to help keep her at home and comfortable, how close are we to the end, when to call in hospice, was the doctor just going through the motions when prescribing the Tarceva, etc...?

She and my father have been married for 56 years, and my father is 80. I'm just as worried about him as I am about her. I've moved in with them, stopped working, and am devoting all of my time to their care and comfort. My dad is relatively healthy, although I worry about him too... He has been in a state of denial, I'm afraid, and actually asked the doctor two weeks ago, in the doctors office when her told us the chemo hadn't worked, "are you telling me this disease is incurable?" It broke my heart. I don't know where his head has been when the doctors came out of the initial surgery and told us "it's inoperable, and she can expect to survive 1-2 years if the chemo works." I have tried to be as forthright and practical as possible, without having a defeatest attitude... My mother knows she is dying, but I fear she will hang on longer than she needs to, for the sake of my father...

I'm beside myself with worry, sadness, and everything that goes with it... this situation is so distressing and I feel completely hopeless.

Can anyone offer me any words of wisdom or anything remotely hopeful...?

Thank you all for reading my story, and please keep my beautiful and wonderful parents in your thoughts.

Ex_Rock_n_Roller's picture
Posts: 281
Joined: Mar 2011

"I've done some research on Tarceva and learned that it, at best, is a "band aid" and usually gives 20-25% extension of time with this disease (NSCLC)."

That 20-25% figure is a statistic based on a lot of data, which says that's what you plan on, but any individual could do better or worse. Sad though it is, a 20-25% extension could in some cases be called a pretty good result with this disease.

"was the doctor just going through the motions when prescribing the Tarceva, etc...?"

I'd cast it in a more favorable light and say he was offering up options which your mom might or might not elect to take. That's his job. I was offered the option of maintenance chemo one year after a successful combined course of chemo and radiation (inoperable NSCLC 3B), and the doc was very specific about his wording. It was along the lines of "... if you want to feel like you're doing everything possible..." I said, "Whoa, back up. 'FEEL like' I'm doing everything possible? Let's dissect that wording a little." We then started talking about the stats (small improvmement in survival rates; nothing "night and day"), and after hearing about the potential side effects, I just said, hey, that's not me, or at least not right now.

Your mom's decision will be her own, but I guess where this leads me is towards your comments regarding her level of pain and function. There is always hope for improvement, but it sounds like job #1 right now is getting her as comfortable as possible. Have you been in touch with any of the practices in your area that specialize in comfort care and hospice? It sounds based on her diagnosis as though she should qualify for any needed coverage in that regard.

The first thing I did after my #1 followup scan was to book time with the most known hospice/comfort care guy in the area, if not the country (who just happens to be local), and talk about my options should my findings eventually become not so great. He started out by asking me why the heck I was there (to which I replied that I was the kind of person who wanted everything on auto-pilot should the need arise), and then did a really good job of laying out pretty much anything that we could do should the need arise. My philosophy is that it's not defeatist to look into all options available to you, even for outcomes that you don't want to contemplate.

It sounds like Mom merits some investigation in that area, if you haven't already done it, not to mention your finding out about some good sources of support that your whole family (not least you) may need. If you have already done this, maybe you need to put more of a bug in their ear about your observations of your mom's distress level.

I know I speak for everybody here when I wish you and your mom the best possible outcome.

Posts: 2
Joined: Nov 2011

Thank you so much for your kind words of advice. I know I'm not the only out there who is going through this with someone I love so much, but at times it feels like it. Thanks again!

Posts: 1
Joined: Nov 2011

Good Morning! I just want to say that sometimes all you need is a band-aid. Your Mom sounds like she has many more immediate problems. Regarding the Tarceva - I was diagnosed with Stage 4 Adenocarcinoma, NSCLC on April 18th, 2011. On May 18, 2011 I started Tarceva and on my very next CT and PET scans in early July, I was NED - No Evidence of Disease. For me, 55 years old and no other health problems, it is a miracle and allows me to live my life for as long as it lasts which includes monthly travel from Honduras where I live to So. Florida to look after my own parents who's health is deteriorating. Wouldn't that be a miracle for your Mom as well if you could take the cancer off the table for a while and focus on other problems?

Good luck - Kelly

ColoradoDani's picture
Posts: 65
Joined: Sep 2011

We've been through a pretty awful year when it comes to lung cancer. Both my husband and mother-in-law were diagnosed with it.

My husband profiled pretty much like Ex Rock N Roller, same stage and treatment, and so far, same outcome (though he hasn't been NED for as long as ex). He is 47 and EGFR positive and a candidate for Tarceva if the cancer returns. This won't be a bandaid and could buy years of life, a significant fact since our children are young. It's our plan B and we're lucky to have a plan B (though, obviously, plan A is much preferred). My friend who's an oncologist (but not our oncologist) has patients who've been alive for 5+ years on Tarceva. It can shrink the cancer, so it may be something to consider. While there are side effects, they are usually more benign than chemo and radiation.

My mother-in-law, on the other hand, had stage 4 lung cancer with mets to the brain. Initially, we looked into all treatment options and did do some radiation. She had one session of chemo and became gravely ill. She decided not to continue treatment and lived fairly normally for a few months, then went downhill quickly. Hospice was amazingly supportive and wonderful. My mother-in-law's hospice program discussed goals with her intitially and stopped by about every 10 days. As she progressed, the level of treatment progressed. It was sad to lose her, but she didn't suffer much and was surrounded by people who loved her. She was in control of what happened to her until the end.

My point is that each person has a different situation and that there's not one right treatment. It really depends on what your mom wants, what the costs vs. benefits are. It seems worthwhile to examine all options, discuss them with an MD who can give good information and help your mom make an informed choice about what's right for her. At least then, you can be assured that you're making informed choices. Good luck. It's painful, but there can be great solace in knowing that you did everything you could to make the best choices you could.

Posts: 1
Joined: Feb 2017

my mother did not qualify for the drug because she did not have the specified cancer. the doctor called the drug company and got her the drug which KILLED her. she had a rash around her eye and he gave her eye drops. that night she strted coughing and i looked up the side effects of tarceva and this was one of them. i had to get a hold of his associate to tell him i was not giving my mother anymore of the drug which she had onlt taken for 10 days. my mother also suffered kidney failure before given the drug tarceva and should have never received the drug in the first place. if this was not bad enough the doctor never took a full scan of my mom's body omitting her head. she had a slight brain tumor. i noticed mom couldn't write her name. from perfect penmanship she went to scribbling. i had to practically twist arms to get my mom a CT scan of her head which showed the minute tumor.

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