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cindy0519

Another Dad with NSCLC

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My father (age 65) was recently (mid-October)diagnosed with sqaumous cell non small cell lung cancer with mets to his hummeral head, the lymph nodes of the chest, the abdomen and pelvic and a small spot on his right thigh. Our "journey" toward this diagnosis began in June when he began having pain in his shoulder and was unable to pull back a bow as he was preparing for an bow hunting trip he and my brother were scheduled to take in the mid Sept. It was a LONG tedious journey to this diagnosis and sadly it appears that our true "journey" is just beginning!

At the end of Oct Dad had surgery to stablize his shoulder which had a pathological fracture and a good portion of the hummeral head missing due to the cancer in this area. He also began 5 weeks of radiation to the tumor in the right lung and surrounding lymph nodes during this time and after healing from the surgery 2 weeks of radiation to the hummeral head was also completed.

The radiation has been a HUGE success from a pain relief standpoint! Prior to the radiation the pain was so immense that Dad had progressed to having to take Morphine twice daily to get any pain relief. At this time he is no longer taking any Morphine, only an occassional Percoset. He had relatively no bad side effects from the radiation other than a rash that seems to come and go as it pleases.

We were scheduled to go back to the medical oncologist last week to discuss chemo treatments but rather than this discussion we were suprized to hear the oncologist say that his recommendation is "no chemo at this time". His advice is to wait until something else "pops up" (and in his words ...it will)and then discuss chemo. Of course since Dad wasn't thrilled with the possiblity of having to face chemo treatment (not like anyone is) he is thrilled with this decision.

I find myself in constant struggle with this recommendation daily! Walking the line between my understanding and wanting to repect Dad's wishes,specifically that quality of life be maintain above all else, while struggling to ensure that he recieves the best medical care possible so that he might also have quantity of life as well as quality is a constant internal battle for me! I have to constantly remind myself that while I might personally choose to battle this disease in more agressive manner and seek the advice/input of multiple doctors --it is my Dad who has this disease and he who must make the choices that best suit him.

Sorry for writing a book as an "intro", I find that this has so deeply affected our family that it is difficult for me to talk about in a short and simple manner.

I look forward to sharing our "journey" and learning from everyone here.

Cindy

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You answered yourself in your post:

"--it is my Dad who has this disease and he who must make the choices that best suit him."

If something does not sit well you should seek a second opinion but it depends on what your father is comfortable doing. Sorry you have a need to join our group...but glad you found us. Welcome.

Rochelle

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Welcome Cindy! I'm sorry you are here, but glad that you found us. You will find great advice, and caring people here that have been through what you and your father are going through. They have helped me so much in the past 9 months!

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Hi Cindy,

I want to welcome you also. You have found a wonderful supportive group here and who are full of knowledge.

Yes the decision is your dads, but does he know that he car seek another opinion to see if there is a doc. out there who believes more in the quantity of life and not the quality. As long as he knows his options then it is up to him do decide what to do.

To me a second opinion is always best, just for peace of mind.

Keep supporting your dad and give him all the love you can. That is what he needs.

Have a nice holiday, and remember we are always here to help your through this.

Maryanne

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Welcome Cindy,

I have no additonal advice - you have heard GREAT suggestions from experts in the previous posts! Just want you to know that we are all here to help and support you. Hopefully you and Dad can discuss treatment options logically together and come to a decision that will sit well with both of you.

Kasey

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Welcome. So sorry your Dad has this beast. Glad what they have done so far has made him more comfortable. Sounds, since your Dad was to go hunting , that on the whole he must have been in pretty good shape. Perhaps with all the treatment he has been through the doctor wants him to have time to "recover" from that. Please keep us posted. If in the future chemo is recommended please know it can be done. There are great drugs now that make you more comfortable during treatment. Donna G

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Welcome, Cindy.

It's so hard not to second-guess just about everything related to this disease, especially when it's still so new. How could you not wonder if they doctor's doing the right thing or if you should get a second opinion or...or....or... :roll:

But, as time goes on, I hope you'll find more confidence in the doctors and be able to let goof the constant "what ifs" a little. Does your doctor have your dad's permission to discuss his treatment options with you? Can you go with dad to a few appointments so you can ask questions and get a really good explanation for the decisions?

Keep us posted. Sending caring thoughts and strength,

Lesie

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Thank you everyone for the welcomes and words of wisdom. Its really great to see that others are going through many of the same things! ...Thank you for sharing your experiences so openly so that we can all learn from them!

I have been going to all of Dad's oncologist appointments regarding treatment plans (he is in Arizona and I am in Ohio - so I have been flying out for the dr appointments, surgery etc.)and he has told the Dr. that he may discuss treatment with his children - though this particular doctor is very reluctant to do so. The biggest issue I think I have will all of this is that the Dr. doesn't respond to my questions or concerns other than to say "he is not dying today you know" (which I find really quite distasteful)and still has not "dicussed" treatment options with us -- he simply comes into the room, makes an announcement of his treatment choice, makes his standard "he is not dying today" comment when I ask questions and sends us on our way with more questions unanswered/unasked than answered. Dad however is very comfortable with this Dr. (he is much like my Dad so his approach to things "fits" well with my Dad if that makes any sense -- both are gruff, cranky old men :lol: ) so I really need to figure out a way to find some peace with all that is happening and the choices that are being made because at this point Dad does not want to look into seeking an additional opinion. He has graciously listened to my concerns and constant chatter about treatment and some of the fantastic results (and in fairness the sickness and progression that others might have) that some patients have had with various drugs but remains steadfast that he wishes to remain with the "wait and see" approach until March. At that time if the oncologist is not more forthcoming with information Dad says he will "consider" seeking another opinion.

My gut tells me that ultimately my Dad's wishes to choose "the path less traveled" and is still struggling with making/committing to this decision, as he "thinks" that our family wants him to have treatment. We have had multiple discussions about what he wants and each time it seems to change (of course dependant on how he feels at the time I think)but I have several times told him that we want him to do what is right for him and that regardless of what that is we will be there to support and love him! I have told him that we "want" him to do chemo (or other treatments for that matter) because he has made that choice and believes that it will help him to feel better (and maybe fight the cancer) not because he "thinks we want him to do it". The very last thing we all want is for him to be sick and misserable only because he thinks that is what we "want" him to do.

Ok -- more rambling ---I'm SO sorry! but boy does it feel good to do :wink:! Thanks for listening and again thanks for all the great welcomes!

Cindy

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Welcome! Hang in there. There are plenty of survivors here to support you. My wife is a 3 year survivor and was given only 9 months. She is presently undergoing her third chemo regimen, and doing okay. Hope you find help here. Don

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Welcome Cindy,

I am glad you found us. You are most certainly going through a lot right now. There is so much support and knowledge here that I am sure you will find what you are looking for here.

Yes, it is you're Dad's decision but no matter what his decision may be we will be here to support and help you through you're feelings and concerns.

God Bless you and yours,

Jane

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Hi Cindy:

I can understand you frustration with the grumpy old oncologist. If your dad is happy with the onc, I guess you just have to go along with it.

If it was me, I would want to do chemo immediately if there was still a primary tumor present, but I can see the logic to a strategy that puts off chemo treatment for a while.

If the primary tumor and lymph nodes have shrunk or are stable, it may be a good idea to put off chemo for a while. That way, you can save the big guns for when you need them. You could think of it as a strategy to make the best use of chemo. Also, your dad could have some quality time beofre chemo begins.

However, keep on encouraging your dad to get a second opinion at a major cancer center.

Don M

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I find that this has so deeply affected our family that it is difficult for me to talk about in a short and simple manner.

if only there were anything short and simple about this. I hear you 100% on that treatment option stuff, too. of course, I always defer to mom's decisions. so far she's made the ones I think I would have made, but there were wavering moments where I wanted to try and sway her, but didn't. instead, I try and help her keep track of all the pros and cons, realities and risks, so that her decision is fully informed. she appreciates this, and I feel like I am both supporting her and being true to myself.

whatever happens, this is a ride unlike any other I've been on. (and I've been on some, :lol: )

hang on, and let us support you.

xoxo

bunny

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Dear Cindy, I dont know if this will help you but my input is similar to your dad's case. I am 73 y/o female in excellent health except for squamous cell NSCLC stage 3b also diagnosed in Oct, 2005. I have had no symptoms at all, cancer found on routine pre op chest xray for plastic surgery for basal cell ca nose. To date, I have had no treatment, other than scans and lung biopsy. At first radiofrequency ablation was considered but there is mets to lymphnodes so it has been decided to do chemo 1/4/06.

I questioned my oncologist about taking any treatment at all because I feel so good and know the chemo might start me on a downhill course. Now, my oncologist is different than yours (it seems) because he talks to me about an hour and is very frank with me. I asked him what I might expect with no treatment. He said I would face suffocation, hemorrhage, pain, organ failure, etc. in a shorter period of time than with treatment. I said "won't that be the same with treatment eventually?" He said yes, BUT the course is slower, less painful, and there is always the chance of some regression that can contribute to your quality of life, however long that might be. I agree with you Cindy, that at a younger age I would fight like heck, but it really is a difficult decision for an older person, I think.

I am going to go through with the Chemo, see what happens. Docs are still talking about ablation surgery but I will handle that when I come to it. My doc talked to me in a way that struck a chord that makes me feel better about going the chemo route, maybe the same way your dad responds to his doc.

Anyway, dear, god bless you and your dad. None of us make bad decisions (on purpose) they always seem like right decisions at the time. I know whatever he decides to do, you will support him.

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It was good to hear that your husband did well after his carbo/gemsar treatment. Thats what I will be taking, and maybe the side effects wont be as bad as I think. Of course, Im thinking the worst :lol: Anyway, after 1/4/06 I will have first hand knowledge and no more guessing or worrying, I will just have to handle what comes :wink:

Good luck, god bless you and HAPPY NEW YEAR! :D

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Cindy,

Just want to welcome you,

the questions you had were already answered

by people that know more about cancer than I do.

Keep us posted for your father and

a good year 2006 for you and him.

Jackie

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Wow! Thanks SOOO much for the overwhelming welcome! I am blown away by all the words of wisdom, advice, and support that you all have posted. I will post an update in the NSCLC section.

Again, many thanks to all!

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Cindy -

I am so glad you found us. I am going to PM you as the treatment plan your dad is following seems similiar to what we did with my mom...and now I wish we would not have waited til "something else popped up" before starting chemo. Radiation also did wonders for her pain relief.....At the end of the day it is your dad's decision, but the carbo/gemzar protocal which many people have had success with is what our oncologist calls a very friendly chemo -- unfortuantely it did not help my mom, but many, many people respond well to it with few side effects.

This monster can creep up fast on folks, and you are doing the right thing by investigating all the options...and getting all the info you can.

As you have already seen, this board will be a tremendous source of support and strength for you.

Holly

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