I need help understanding my father's NSCLC - PDC

[Guest bkr43050]

My father was recently diagnosed with stage IV NSCLC classified as poorly differentiated carcinoma (PDC). It has spread to the ribs, scapula, and pelvis. He is 62 and was a smoker his adulthood up until 46 years old. The initial counseling with the oncologist was like a bomb being dropped on our whole family. We knew in recent weeks that his condition was getting much more serious but for some reason they really struggled to diagnose his condition.

The doctor left us with a very bleak outlook when we left the office. I am not blaming him as I am afraid he was merely putting everything on the table, so to speak. Nevertheless, he was reluctant to give any prognosis for the amount of time he has left with us here in this world. I fully respect the doctor's decision to not give a time because so many things can happen. And given that he has not begun treatment, nobody knows yet whether the cancer will react in any way, favorably or unfavorably.

We know now that is has not met'd to the brain and they have begun his chemo treatment earlier this week. I guess what I am looking for here is any help understanding all of this. Realistically, what are his chances for an extended period of life from here on out? The doctor basically told us that it is an uncurable cancer. I don't think any of the family has any realistic expectation of a cure but I am still holding out hope for improvement and that he can still have some quality life. Am I being overly optimistic? I understand that his cancer type (poorly differentiated carcinoma) is a very rapid growing cancer. Does that mean that it is also a lot less responsive to the chemo treatment?

Is there anyone here that has been through a similar cancer experience, either personally or a friend/family member? Again I am just looking for a lot of answers right now. I have done quite a bit of internet searches to try and understand the cancer that he has. I am not a doctor so getting through most of the clinical terminology is very difficult.

Thanks in advance for any feedback anyone may have.

Brian

[Ry]

Maybe the doctor didn't give you a prognosis because he truly doesn't know. Most of the members here have greatly outlived their prognosis. Take heart...there are many Stage 4 individuals here that are doing just fine. Just because there may not be a cure for your dad doesn't mean he doesn't have lots of time left. My husband is taking Tarceva and it is holding his cancer stable.

I wish you and your dad the best~

Rochelle

[ginnyde]

Brain,

I am so very sorry that you have to be here, but given the circumstances it is the place to be.

Each lc survivor reacts differently to treatment. My husband was stage IV when dx'd but he survived for 23 months with most of it a near normal life.

We have many members here that are still surviving. Keep us posted.

[john]

A fast growing usually responds initially very well to chemo. Chemo targets fast growing types of cancer the best.

The problem is that after a time they become resistant, but then other drugs can be tried. You might want to ask about clinical trials before treatment starts. Once treatment starts it may limit clinical trial options due to the previous treatment.

There are people who have a good quaility of life with stage IV cancer. My mom knew a 3+ year survivor of SCLC ( I think she may still be living).

[Guest bkr43050]

I knew I could count on folks here to offer words of encouragement. This really is a great site to gather and console one another. I keep trying to instill the confidence in my mother and father that like Rochelle said, they really don't know how long he has. They don't know what the chemo will do to the cancer. I keep praying and maintaining my faith. So far Dad has been a real trooper. He has been having quite a bit of pain in his shoulders but he has been struggling with some old problems with them so I am hoping that the pain there is being magnified due to some arthritic joints and rotator cuff damage. His pain in the ribs has subsided somewhat in the last couple of days and he is taking that to mean something positive. The cancer had eroded into the rib and was causing a lot of discomfort prior to the treatment. I spoke to him today and he seemed pretty whipped. He slept quite a bit during the day so I am thinking that being the third day following his treatment he may be really experiencing the peak effects of the treatment now.

I will be away from the computer over the weekend but will check back in next week. Thanks for the support from everyone. I have really gained strength in reading so many survivor stories here.

God Bless!!

[Guest bkr43050]

John,

I hope that the chemo does as you say and has a strong impact initially because I feel that the condition that Dad has progressed to in the last few weeks would not make for a very "normal" life even in the immediate future. I think we need to make some quick ground on this thing.

I had not heard anything about the view that clinical trials could become less effective after treatment starts. We actually do have an appointment set up for this next Thursday with another doctor who is with the James Cancer Clinic in Columbus. One of the things I was interested in hearing from him was the prospect, if any, of clinical trials in his case. They advised us to begin with his current treatment plan and then do the consultation as we are in the process. The fact that he could not get in for two weeks was an issue. I have been able to see Dad's health declining in the last few weeks and I feel we needed to start ASAP.

[Don Wood]

your dad does have a chance for quality of life. Prognosis in lung cancer is just a statistical crapshoot. Every person and circumstance is different, so your dad could fall anywhere along the curve, and why not the best part of the curve? My wife is Stage IV NSCLC and was given 9 months statistically. She is now in her 30th month since diagnosis and still going well. Her life is not what it was before LC, but it is a quality life, and she has reached out and touched so many with caring and hope. So hang onto the hope, and be optimistic. Blessings to you and your dad. Don

[sharyn]

Never ever listen to stats... they truly just don't mean that much.... Daddy lived almost four years diagnosed at StageIV... and 90 percent of that time was QUALITY TIME.... he felt great and never missed a beat . Stay confident, stay optimistic and stay here with us... we will help you through....

[MelanieLR]

Dear Brian,

Your Father's dx sounds slightly close to my own. In the beginning of June of 2004, I was dx with stage IV NSCLC, mets all over the daggoned place including the brain. Lets start with the fact that we should NEVER listen to their numbers, but I'll go on to say that they gave me a couple of weeks without treatment & no real clue - possibly 6 mos. with. Guess what. I'm still here & kickin' pretty darned strong most of the time. They can take their 2 wks, 6 mos, or whatever & (*&$#$^#)*&$^ OH GEEZ, SORRY! If you care to look at my profile, I don't plan on going anywhere any time soon. You just really never know what will work best with whom in this disease. I'm currently on a Chemo break & lovin it. I also know, I'll get to confront that beastie again but that's just the way it goes. I was 43 when they found my dragon. In a few months I'll be 45. I truly believe that the attitude has so much to do with what can be done for you.

I just want you to know that it's not the battle that is important. It is waking up everyday to believe that there is a new adventure, life, awaiting you that matters.

Please know that you, your Father & all who love him are in my prayers.

Let me know if there is anything I can do for you. It may turn out that I will have useful treatment info pertinent to your Father - then again, it may not. Heck, what I had for my last chemo is probably totally oblolete by now (about one month off now). I'll be more than happy to share.

Hugs & Prayers,

Melanie

[Maryanne]

Hi Brian,

It is so important to listen what Don,Sharon and Melanie said, Don't listen to stistics as people here beat the odds every day. All you have to do is read some of the profiles.

You must be going through such a hard time right now. The initial shock not knowing whats next is extremely stressful.

Just hang in there and be there for your dad. Having the support of his love ones will be a tremendous help to him.

Maryanne

[carrie]

Hi Brian,

I am so sorry about your dad and what your family is going through. However, you have come to a very good place. Just as everyone has said stats are only numbers just like in any other disease. We are humans not numbers. I would like to add to something to the encouragement the others have given you - I was diagnosed in Feb 2004 Stage iiia - in Oct 2004 I had mets to the brain had surgery and whole brain radiation and after all of that had two more tumors to the brain, just had Gamma Knife surgery two weeks ago. I feel great, my new normal. I attribute this to the many prayers I have received and my faith. Without faith I can honestly tell you I would not have made it through. Just wanted to share that with you. Your dad and family are in my prayers and keep us posted on his progress.

Take Care,

Carrie

[cathyr]

Brian,

It's been 3 1/2 years since my diagnosis of lung cancer at the ripe old age of 50. None of us know how long we have left. The cancer, though, teaches us to live one day at a time.

I am now in a clinical trial and hoping for a miracle. It's been known to happen. The important thing is keeping the pain under control and being optomistic and realistic at the same time. Sometimes thats difficult. But, get all the support you can and just love you father.

We are all here for you!

Hugs,

CathyR

[cindi o'h]

Hi Brian.

I have heard that there is not a cure for lung cancer either. But, I am hoping that is not the case. Well. I have also heard that it is treated as as chronic illness. Whatever pops up, you just keep beating it back. Kind of like treating diabetes or heart disease. Whatever the case may be, there is hope.

I have been surviving stage lllb for about (I have to count on my fingers now) 28 months. There is no evidence of any cancer anywhere in my body. Ten years ago, would this have been possible? Today, when your Dad has his treatments, who will know how the cancer will react to them. It is all a mystery.

Take this time with him and learn from this experience.

Today is the gift.

All my best to you and to your family.

Cindi o'h

[Guest bkr43050]

Once again, thanks for the prayerful responses. I can tell you that they are truly appreciated.

Dad is scheduled for his second chemo treatment tomorrow. I am hoping that he is still able to make it there. He had to go to the hospital today as outpatient to get some blood transfusions. They discovered yesterday that his hemoglobin level was very low and he needs three units of bood. Unfortunately they can not give that much without putting him in to monitor. I am hoping all goes well with that and they get his energy level up to fight through another and stronger treatment.

So we will keep the prayers flowing.