Grandpa diagnosed with large stage IV NSCLC

GRANDdaughterD · Regular Joined: 31 Aug 2008 Posts: 15

Hello everyone. We just found out last Thursday that my 87 year old grandfather has a large non-small cell carcinoma (8cm) and another small one in his left lung. His PET scan showed extensive metastasis in his bones and some areas of activity in his esophagus and stomach. The doctor thinks that could be related to long-term GERD because nothing showed up on my grandpa's CT scan there and he isn't having pain in his stomach or difficulty swallowing. He is hoarse though.

He has quite a bit of bone pain and a lot of weakness. He's fallen several times. He's lost almost 20 pounds in the past few months and weighs about 127 now. He's on pain medication, Combivent, and Megace for his appetite loss, but no other treatments right now. We have an appointment with an oncologist for September 16th. His diagnosing pulmonologist told us he can't live alone anymore, so he and my grandma are moving in with my mom in 2 weeks and she and I will share caregiving duties. My grandma can help with some things, but she's getting frail herself (she's fallen too.)

My grandfather smoked for 57 years and also has asbestosis from exposure during a job when he was in his 30s. The doctor said those two
things combined astronomically raise the risk of lung cancer. He's also been diagnosed with mild to moderate emphysema. The doctors said his cancer is inoperable, that he can't tolerate chemo, and that he has 6-12 months to live. His pulmonologist thinks he may be a candidate for palliative radiation and said he's a perfect candidate for hospice.

My grandparents raised me and it is heartbreaking to see my grandpa suffer.

Here's my first question:

He wants to go to Cancer Treatment Centers of America because they "don't give up" according to the commercials, but his doctors said those treatment centers often make promises that offer false hope. They recommend hospice and a focus on pain relief. Should I tell my grandpa what his doctors said and encourage hospice or make the appointment at the treatment center so that he feels in control and that there is still hope? I don't think he's hoping for a cure, but I do think he's hoping for some new treatment that can extend his life longer than 6 months to a year.

Here's my second question:

He needs a walker and we'd like to get him one with wheels and a seat. Where/how do we get one of those? Is it covered by Medicare?

Thanks for being here.
_________________
D
My wonderful grandfather was dx with metastatic stage IV lung cancer on 8/28/08. He passed away at my home on 9/21/08.

Rest in peace, Poppy. We love you.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1388

Hello Granddaughter,

Welcome to the forums and I'm sorry you have such a bad reason to have found us. If the doctor writes up a script for a walker, take it to a medical supply house and it should be covered by Medicare. Better yet, call a supply house and find out if this IS something that Medicare covers. We had oxygen and a nebulizer that was covered, so I can't see that a walker wouldn't be, but don't know for sure.

Please follow your doctors recommendations. They will give him any radiation that they feel is correct for pain control and hospice or a palliative care team will help with medicinal control of the pain.

If he feels moved to try CTCA to have the comfort of a second opinion, that's fine. They do not have any different treatments than your local oncologist or radiation oncologist already have. You need to know that. Yes, their TV ads are pretty slick and apparently some have felt more of a warm, fuzzy atmosphere there, but the reality is that they cannot do anything more for your Dad than any other medical facility. Their care is more coordinated within the facility and they will address food issues, but it sounds as if these are already being done for him. I'd go with your gut instinct on this one, but it is his call to make. Just know the facts about what they can and cannot do. It sounds like he has already seen the right doctors in the process of diagnosis.

The timeline you have been given is an approximate. Many patients live longer and some shorter. Only God knows when our time comes. Because he is in such poor health already that almost takes chemo out of the equation. The doctors have a performance stat scale that they utilize to determine whether a person will benefit from more aggressive treatment and clearly your Grandfather's stats, just from your description, are already severely impacted. He doesn't have heavy tumor burden in his lungs, but he is already compromised due to the COPD. The location of the larger tumor is important also in how it may impact his breathing.

Have you asked about whether he'd be a candidate for at least having Zometa given to strengthen his bones and possibly stave off more bone mets? I'd inquire about that. I don't know if this is something they do without also doing chemo. I just know that my husband had a couple of bone mets that disappeared with treatment and was also receiving Zometa, and never got other bone mets. The problem is, lung cancer loves to run to certain areas, like the bones.

Have they done a brain MRI?

I know --- lots of questions and information, so I'll stop here and let you digest some of this.

Again, I'm sorry that your Grandpa is dealing with this diagnosis.

God bless and hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

GRANDdaughterD · Regular Joined: 31 Aug 2008 Posts: 15

Thanks for the quick reply. I haven't asked about Zometra, but I will on Monday when I take my grandpa to his first oncology appointment. He hasn't had a brain MRI, but he had a whole body pet scan and no areas showed up in the brain or liver. They didn't find any cancer in the lymph nodes either. (Which makes me wonder how it spread to the bones.)

Thanks for the tip about the walker--I will do that Monday after the appointment.

I haven't had a chance to talk to my grandpa about CTCofA since I talked to his doctors about it. I will leave it up to him. I just want to be able to convince him that they aren't the only way to have a good quality of life in his remaining time.

Thanks again.
_________________
D
My wonderful grandfather was dx with metastatic stage IV lung cancer on 8/28/08. He passed away at my home on 9/21/08.

Rest in peace, Poppy. We love you.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1388

Granddaughter,

Just as an FYI, PET scans are not utilized for brains. Only CT scans or MRI's pick up any met activity in the brain. Thought you'd want to know. Make sure someone is jotting down all the questions you want to ask for when you make an appointment.

I guess I didn't realize that he hadn't conferred with an oncologist yet. He might suggest some mild type of chemo or maybe even an EGFR medicine like Tarceva to see if your Grandpa might respond.

Best of luck and let us know.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

GRANDdaughterD · Regular Joined: 31 Aug 2008 Posts: 15

I will ask about the MRI then. My grandpa was diagnosed by a pulmonolgist at a lung clinic in a teaching hospital. He had the tests and the biopsy at that hospital. Since they are moving here (to another state), he hasn't had a chance to see an oncologist yet. He was just diagnosed last Thursday. His surgeon and pulmonologist don't think he's in good enough health for chemo. What's the medicine you mentioned do?

P.S. I just read you and your husband's story. (((HUGS))) It was very touching and inspirational to hear that people with stage IV NSCLC can survive longer than the 6-12 months the doctors give. Whether that is the case for my grandpa or not, I think it will do him good to hear that it's a possibility. I think he needs that hope.

Thanks,
D
_________________
D
My wonderful grandfather was dx with metastatic stage IV lung cancer on 8/28/08. He passed away at my home on 9/21/08.

Rest in peace, Poppy. We love you.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1388

Granddaughter,

The pulmonologist is often the doctor that makes the initial diagnosis. The oncologist will assess your Grandfather to determine whether he is a candidate for any palliative treatment or he might recommend hospice. Be prepared for either scenario. Typically the lower the performance stats a person has means they are less able to perform routine tasks and will probably not be able to withstand aggressive chemotherapy treatments.

Tarceva is a very expensive chemo pill (about 3500 per month back in 2006) that has been shown to shrink or hold steady the cancer in up to about 50% of patients. Some doctors are now testing fresh tumor samples to see if the patient has the EGFR mutation that is the most receptive to this chemo. They weren't doing that when my husband was diagnosed. If the person does have the EGFR mutation, this drug has produced stability in some patients for up to 2+ years. My husband didn't respond at all and his cancer spread a lot while trying this for 3 months. Various studies have shown that it works best in Asian female never-smokers, but I've seen men who smoked respond too. Please see Dr. West's website at cancerGRACE.org and you can put Tarceva into the search box and pull up all kinds of information. He is an oncologist with a specialty in Lung Cancer and this site contains the best information on the internet. You can even ask him questions and he'll answer.

Good luck with the move and getting to the oncologist with questions. A review of Dr. West's website articles and postings will give you a lot of background information that can help you write down good questions for the visit.

Thank you for your kind comments about my husband. He was a real trooper who fought so very hard to live. We felt the same way once we found others who had longer survival times with stage IV and then he became one himself. God was good to us.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

GRANDdaughterD · Regular Joined: 31 Aug 2008 Posts: 15

We saw a medical oncologist for the first time yesterday. I was kind of annoyed because the doctor didn't have all the medical records he wanted yet. He wants the slides from the biopsy and the CD-ROMs from the scans to see if he agrees with the diaqnosis. I was annoyed because I think his office should have gotten them BEFORE our appointment since my grandparents moved here in a rush in order to see the doctor faster. Now we have to wait another week and a half to get any treatment recommendations. It's a hurry up and wait situation.

I was surprised that the doctor didn't rule out chemo--but rather said that there are a lot of misconceptions going around about it making you miserable and that with lung cancer chemo, you have a 50/50 chance of tolerating it well. He gave us a 30% chance that chemo and radiation would put the cancer in remission and slow things down some to give my grandpa more time. I don't think a 30% chance with a 50% chance of being really sick from the chemo are very good odds, but since it is ultimately my grandpa's decision and the doctor doesn't have all the information he wants, the course of treatment hasn't been decided yet.

Another thing that bothered me was that the doctor seemed cocky and jealous of his specialty. He said that the diagnosing pulmonologist was overstepping is bounds in saying he didn't think my grandpa was in good enough health for chemo. He said, "I see I'm going to have to get over this hump of what the doctors in Texas told you." The appointment just didn't go like I thought it would.

Then the doctor told my grandpa that if he joined hospice my grandpa wouldn't come and see him anymore, but rather he'd just consult with hospice over the phone. That made my grandpa hesitant about hospice because he's "afraid of losing contact with that doctor."

Does all this sound like the normal way things are done in an oncology office? Maybe I'm just used to a more cooperative effort between doctor and patient. I think if the doctor was solely making the decision, he'd give my grandpa chemo and radiation.

How can I help (or find someone else to help) my grandpa make the decision between treatment and hospice?
_________________
D
My wonderful grandfather was dx with metastatic stage IV lung cancer on 8/28/08. He passed away at my home on 9/21/08.

Rest in peace, Poppy. We love you.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1388

Hi,

Sometimes things don't move very fast when records/info is traveling from one destination to another. The oncologist is the only one who can make the call on appropriate treatment after viewing the slides, reports, and scans. I'm sorry that your Grandfather arrived before the info.

The doctor's attitude has a lot to do with the confidence level of pursuing treatment. It all depends on how your Grandfather felt about the initial consult. You should request copies of all information, as a standard rule of thumb. Maybe a second opinion wouldn't be a bad idea. As long as your Grandpa has a clear understanding of the choices and outcomes, it still is his decision to make. Often people will have a go at chemo and if they don't like it, they can always stop.

Good luck and I hope the medical info gets to the Oncologist soon. Hanging in limbo is tough. Have you mentioned how old your Grandfather is and did I miss this?

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

GRANDdaughterD · Regular Joined: 31 Aug 2008 Posts: 15

My grandpa will be 88 in November. He also has asbestosis, emphysema, and heart disease. Right now he barely has the strength to walk unassisted. I just got the prescription for the walker today. He has fallen several times in the past year. He is sleeping a lot--often nodding off when he sits down. He says he just doesn't have the energy or ambition to get up and go.
_________________
D
My wonderful grandfather was dx with metastatic stage IV lung cancer on 8/28/08. He passed away at my home on 9/21/08.

Rest in peace, Poppy. We love you.

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