Dad's NSCLC stage 4 has spread to his bones. Questions!

[Mouse5]

Hi!! My dad finished his 1st round of radiation/chemo @ Thanksgiving, and just had his PET scan on Friday, January 21st. The scan showed that his LC was pretty much wiped out, but that it has spread to his left hip socket and two spots on his spine.

He was sent to an orthopedic surgeon and told that surgery isn't an option for him. (He had another CT, x-rays and spent the night in the hospital.)

The plan is to do radiation on his hip and a stronger chemo. His radiation oncologist said that it's now pallitive care. I know he cant' tell me how much time my dad has, but I did ask him to give me a round about time given that he has treated my dad from the beginning. He said about a year. From what I've read, it seems that 8 months is average.

My dad has just started to have a little bit of pain off and on while walking. His back also has had a little bit of pain off and on, but nothing bad.

What can we expect with bone cancer? I have heard that it can get pretty painful. My dad will not want to live if he is knocked out with pain medications or unable to walk.

I have read about medications to diminish the progress of this and medications to help with bone mass loss.

The first round of radiation/chemo sent him to the hospital twice w/dehydration and then pneumonia. It was just brutal on him.

I just would appreciate any advice or info!!

Thank you!! Lisa

[Annette]

I am not sure how to respond to your questions. There are many people on this site that may be along shortly and many have suffered through the various treatments associated with this horrible disease. The best thing I can suggest for you is for you to try the cancergrace.org site. There are numerous oncologists that answer the hard questions associated with treatment - while they may not have specifics they can offer much of what you are asking so please try there. Many of the members of this site have used the resources they offer.

Again, I'm sorry you have to ask these questions - and hope someone comes along and helps you more than I can.

Annette

[recce101]

Hi, Lisa. Don't count your dad out just yet. You said his first-line chemo "pretty much wiped out" his lung cancer, and that's remarkable, certainly more than my treatments have done for me. But I'm still here and doing okay 4-1/2 years after diagnosis. This "one year" figure you were quoted is the median (mid point) survival of a very large group of patients with a similar diagnosis who started their treatment 10 or so years ago. Some were very sick at diagnosis and died shortly thereafter, and some lived many years. I would have been given the same one-year figure if I'd asked, but I didn't, because I'd been advised that these numbers have very little significance for any individual patient.

Bone mets can be painful, but they don't have as much of an influence on a patient's longevity as mets to some other places in the body. Radiation can be effective in relieving the pain and stabilizing the bone to reduce the chance of fracture.

What chemo combination did your dad have initially? And do you know what second-line chemo is now planned? I doubt if it's "stronger," but most likely it would be a different chemo, since probably his cancer has mutated enough to be resistant to the first drugs thrown at it.

Now one more thing, use of the word "palliative." In cancer there are two categories of treatment — treatment with the intent to cure ("curative") and treatment with the intent to reduce symptoms ("palliative"). With our current medical capabilities, stage IV lung cancer (which your dad and I have) is not considered curable, so any treatment is by definition palliative. But that does not mean that the cancer cannot be managed/controlled for a long time and perhaps indefinitely. It mostly depends on how aggressive the cancer is, how well it responds to treatment, and other aspects of the patient's health. So palliative treatment is not giving up — far from it.

If you haven't visited and registered at cancergrace.org (GRACE, Global Resource for Advancing Cancer Education), please do. It's a remarkable resource. Aloha,

Ned

[Treebywater]

I love, love, love Ned's reply. He knows his stuff too! Don't count your Dad out just yet and don't be thrown off by that 'p' word. There IS hope. And what positive news that his first line treatment was so effective!

Standing with you and your Dad in the fight and sending prayers and hope for you both!

[Janet B]

I am so glad that Ned responded to you! He said it perfectly.

I just wanted to let you know that I am also stage 4 with mets to the bone. I had Mets to 3 spots on my spine that had become so painful that I couldn't lift my leg, sleep, or get up from a sitting position. I was given a prognosis of a few months to a year - but that was 4 years ago. I am living a very full life, pain free. The radiation shrunk the tumors, which relieved the pain and the chemo drug I am on has kept the cancer cells from progressing. So, no, at stage 4 I won't be cured, but I CAN keep on living.

You asked about medication to help the bones - I get infusions of Zometa - which is a calcium supplement to help strengthen my bones.

Prayers for you and your Dad-

peace - Janet

[Joppette]

I'm glad Ned came along too, for he gave the perfect answer. That about sums it all up. Janet too. Hopefully the radiation will help immensely. Do also remember, that narcotic pain medications are there to kill the pain. If when taking them you are "out of it" the med is too strong. My Mom functioned at a high level, even while on a lot of pain medication because she needed it to function.

She was very active, and on such doses of multiple medicines that her doctors thought she was overdosing. She was alert, sharp and active. So I hope all these posts give you hope. Share them with Dad too.

MI Judy

[snappy]

Lisa, I hope your Dad can keep his spirits up. It really will help him to fight this disease. You can really learn a lot on the Internet. Just as Ned posted. Of course everyone is different. You learn what options might be available. My husband is in a very similar situation as your Dad. I am trying to learn all I can so that at least he can have a chance to fight back. I will have you and your Dad in my thoughts and prayers.

I still do not know if my husband’s cancer has gone to the bones or bone marrow. Oncologist said bones and yet the MRI reads like bone marrow. Could Ned’s post also apply if it is the bone marrow instead of the bones as Lisa's Dad's is. Other than that my husband is just about the same. Thanks.

Hope I didn’t do this wrong by asking here but I thought maybe just a yes or no.

[snappy]

Katie, just want to say a quick thanks for response. I do know how true Ned's words are. I have even kept them to remind myself. Thanks,

Lisa, will keep praying for you and your Dad.

[fillise]

In addition to Ned's great response, I also want to emphasize that the prognosis is meaningless on an individual basis. My mom was diagnosed with stage IV lunchg cancer with mets to her spine. I looked at the stats and began preparing myself to lose her within the year. She had other plans. She responded so well to the initial chemo and radiation that she was off all treatment for well over a year. Then she would do another round of chemo and radiation and get some more time off. most of that time she was feeling pretty good and was active. The cancer finally took it's toll, but it was 45 months later. I am grateful for the additional three years beyond what I expected. There is much in your Dad's story that sounds similar to hers so I hope you have that much time and a great deal more.

Susan

[snappy]

Hi all; Again, this is Lisa's topic but I want to thank fillise for adding to the responses. I know this disease can go either way but I am encouraged by these posts. We are not up to time for a new scan yet and so have no idea the response to the current treatments. Thanks fillise for your sharing.

Katie, I have been to GRACE and got good thorough response on another topic other than the bones. Thanks for the referral. Had been referred before but this time gave it a try.

Lisa, I keep thinking about your Dad and how he is doing. Will be praying for you both.

Mary

[B-1 83]

Teacher Wife had a dozen or more mets to her bones when diagnosed back in August of '09. She had a good response to chemo (8 rounds of carboplatin/taxotere), full brain radiation for a skull met and possible leptomeningeal carcinomatosis, and is now on Tarceva. Not only is she stable, she is still teaching 5th grade. As somebody else said, 8-9 months may be an average, but averages, being averages, can be skewed.

[Mouse5]

From the bottom of my heart, I thank each one of you for replying to my post. I appreciated it so much. I am sorry it took me so long to thank you.

I am sad to say that my dad passed away on March 19, 2011

The advice and support I received on this site was amazing and I am so grateful to have found it.

I will be keeping you all in my prayers.

Lisa (Mouse is the nickname my dad gave me as a child.)