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Pat Westberry

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My father-in law has been recently diagnosed with Stage 4 non small cell lung cancer. We were told by his lung DR. that it was inoperable and terminal. He gave him about a year to live. He has two large tumors, one in each lung and in the lymph nodes. My father-in-law is 81 and in pretty good health prior to this with the exception that he has asthma pretty bad. He lives alone . His wife died about 6 years ago. We live about five hours away from him. He me with the oncologist alone the first time. He was very up beat and really liked the Dr. and couldn't wait for us to meet him. He was sacheduled for a MRI and then to meet with the oncologist again.A week later we met the oncologist and on first meeting really like him. He was very positive and encouraging. He told us the scan did not show any tumors in the brain and that that was all he had them look for. He assured us the tumor was localized to the right lung with no lymph node involvement.(Why did the lung Dr. tells us that the lymp nodes were involved)But as we got to asking him questions we became a little uncomfortable with his answers. When we asked him about the tumors growth he said it didn't really matter how much the tumor had previously grown, all that mattered was how it went from now on. (We already knew that the tumor doubled in size from November until January). We asked him more questions about the results of the scan. He finally started reading us the results of the scan which stated that the lymph nodes were involved and that the tumors had grown from 2 cm to 5 cm and from 2.5 cmt to 6 cm. We were confused as to why he gave us his first results that didn't match these. He explained the treatments, including all the ones that he couldn't do. He explained to us that this type cancer is usually treated with a large dose of chemo every three weeks but because of Bill's age and general health, he didn't think he could tolerate that so he was going to give him a lower dose, once a week for three weeks. Then he wanted to do another scan to see if this was accomplishing anything. We discussed this in length with me taking notes and him assuring us that we would do a scan in three weeks to determine the progress. He understood that we are coming every week from out of town and needed to make our schedules work with Bill's treatment. We asked about side effects. He told us that the only side effect that Bill should experience was hair loss. He would be getting drugs to conteract the other side effects and he didn't expect him to expeerience nausea or anything else.That sounded great. Because we have some experience already with cancer, we questioned when he should expect to feel any of the side effects. He told us probably on the 2nd day which was what we expected.

We questioned him as to what he expected the treatments to do since this cancer was supposedly terminal. My exact words were "What do you expect to accomplish by this treatment?" He asked me what I meant by that and I said. "Do you expect to slow down the tumor growth, put it in remission or cure him." He said he expected to cure him. My husband and I were somewhat surprised by this answer. He expounded on his beliefs and Bills attitude and all kinds of things in general and then right at the end He went on to say I have promised your Dad a 10% chance of survival for 5 years. That didn't sound like a cure to me. Regardless of our feelings, Bill was excited and ready to start treatment which was scheduled for the following Fri. We got out my Day planner and looked at the Dr. calender and scheduled that we would be here the next three Fridays. Bill would the have a scan, which we would not come up for as he was well able to drive his self to that. He left and said he would send in the chemo nurse to talk to us. He reminded us to stop by the desk and get the next appt. scheduled and pu lab orders for the following friday. When we got thru and went to the front we found out that the Dr. had scheduled the next appt for Monday the 17th at 4;00. we were not happy because he knew that Mondays were not good for us.

Bill called everyone when we got home to tell them that the Dr. expected to cure him and guaranteed him 5 years.

The next week (on Friday)we go to start the chemo. We questioned them some more about the treatments and what to expect because Bill was pretty nervous. They began to explain some of the side effects and Bill told them that the Dr. said he was giving him medicine and wouldn't get any except hair loss. The chemo lady told him that that was not true and that he would most likely experience some nausea and fatigue. As the treatments continued she explained that the symptoms would probably intinsify. We told her that we were anxious to get these first three streatments done so that he could get the scan and we would see how well this is working. She looked at us real funny and said she needed to check his records. She came back and said that Bill is not scheduled to have a scan anytime. He is scheduled to take a dose once a week for three weeks and then off a week and then start all over again. She explained that they never scan until at least two cycles have bee completed. ??????? What is going on???

The treatments went fine, and Bill said he didn't feel a thing.

Saturday morning he said he was a little tired and a little quessy, but no big deal. We left and came home Sunday morning. Bill hasn't been out of bed since we left, the naseau has stayed and the fatigue is getting worse every day. My husband is on his way back. I stayed at home because I could not get off work until tomorrow and we are concerned that someone needs to be there with him. He goes back for another treatment tomorrow. Should we be as concerned as we are? We do not have a lot of confidence in this oncologist but my father in law loves him because he promised him a cure. I need to talk to someone who can be honest with me. My father in law has booked a fishing trip with my husband and his best friend and his son for this summer. He wants to call next week and reserve a lodge in Costa Rica. Realistically we don't see this happening.

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Pat: I can understand your distress. It doesn't sound right that an oncologist would be so inconsistent unless he's trying to tell the patient whatever he wants to hear. The real problem sounds like he has your father fished in and that could be difficult to reverse. Perhaps some of the more seasons people on the site will come in and offer more than emphathy. But I do feel for you and your family.

Judy in Key West

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Thanks for your response. I am just terribly concerned because that is what i feel. The Dr. just seems to be telling Bill what he wants to hear. Bill originally went into this saying that if they were just going to put him thru treatments that would make the quality of his life unbearable that he didn't want these treatments. However, if there was a chance of curing him, then he was all far proceeding. He has all these plans for things he wants to do this next year. He calls it his "bucket list". We are just so upset and don't know what to do. We would like him to change Dr.'s but are afraid to even braoch the subject with him. His spirits have been so high that we do not want to do anything to change that, but right now we do not have a lot of faith in this Dr.

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Pat -

First of all, welcome to the forum. You will find a lot of information and strength and caring on this site.

Seems like you have a lot on your plate right now. I cannot answer all your questions, but I can give you some suggetions.

First of all, I did not do weekly chemos, I did mine once every three weeks and they did not do my first scan until I completed my 3rd cycle. Don't know how they do it when you have chemos weekly.

Secondly, since you seem to have so many questions, is there a way you can contact the doc and discuss each one with him when your FIL is not around?? If not, is there a PA or someone assigned to the doc who you can talk to?? Sounds like you have some legitimate questions. I would also ask them if there are any medications they can prescribe for him to help with the nausea and lack of energy. Was he given a Neulasta shot the day after his first chemo?? Sometimes those will kick your butt for a while.

Lastly, you can always get a second opinion. Seems like that may be a little difficult since your FIL loves this doc, but then again you have to remember that positive thinking goes a long way in cancer treatment. If he feels like this doc is going to help him, then he will stay positive. So many of us were told just the opposite - a year if you're lucky - and believe me, in the beginning it was quite difficult to stay positive. We all learn that the stats are not to be taken seriously, but you certainly wouldn't want him laying in the bed giving up, either.

Don't know if this helps you at all - hope it does a little bit. We are here for you and your FIL. You can come here to ask questions and to vent.

Hugs - Patti B.

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Welcome to our group Pat. I'm sorry you're having so much trouble with the Onc. To answer your question about being concerned, YES YOU SHOULD BE AS CONCERNED AS YOU ARE. MAYBE MORE SO. But I'm not sure what you can do about it - other than to collect a lot of opinions suggesting he find another Onc. Clearly, your father-in-law's Onc. isn't telling the whole story. (I'd like to say isn't telling the truth.) No one, including an Onc. should be making the kind of predictions he did. Without treatment, your FIL wouldn't live very long. How long? Ask God and he generally doesn't tell. With Tx. how long he might live depends on how aggressive the tumor is and how he tolerates chemo.

The Onc. isn't paying much attention to the patient's records or to what you all told him. And if he read the records carefully, he forgot what he read. And, maybe, his office staff isn't very good either. I had all of those problems with the first Onc. I saw in Orlando. Everyone had different and conflicting information for us. You and your family really, really don't need that - you deserve much, much better.

How to find "much, much better?" Let us know approximately where you are and where your father-in-law is and we may have members who have been to Onc.s in that area. Look for a comprehensive cancer center if you can find one. Call the lung doctor and ask him to recommend several Oncs. Look on the internet.

Often, when someone is given a diagnosis of cancer, it is difficult to process all the information or to accept all of it. Go slow with this, except try really to find a different onc. as soon as you can.

I'm not sure he should be alone the first few days after chemo. If nothing else, he needs someone to remind him to drink lots of water, to eat whatever he can, and if necessary to call the doctor to report any difficulties he might have.

I'm sure others in this group will also be upset about your experiences. You'll hear from them soon. Please come back often with questions and do let us know what happens next. Thanks.

Muriel

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Patti thank you so much. I had resigned myself to waiting days to get a respond. I love this site already. As I previously explained, we were VERY HAPPY that Bill had such a great attitude because we were terribly concerned that that would not be the case with him. I just lost my beloved sister-in-law to kidney cancer this past August after a terrible 2 year fight for survival. Because of this, my husband and I were already familiar with a lot of the cancer terms and importance of knowing stages and therapies. Bill talked to us extensively when he the lung Dr. told him he needed a biopsy. He was not really down in the dumps but it was definately a sobering time. We discussed the fact that everyday new treatments come about and we needed to just take it day by day and not jump to conclusions but rather wait and get back each and every result from the Dr. His main concern was losing his hair,(He's a very vain 81 year old). We talked him thru that and convinced him that it would be a distinguished look and if thats what it took to fight this then so be it. We promised him we wouldn't hide anything from him, but that we would not condone him not following thru with the intitial tests. He agreed and everything has really gone well until this Dr. I want to keep him upbeat, but i do not like feeling like this Dr. is misleading us and just telling us what he thinks we want to hear. I have no problem with them waiting to do the next scan. In fact his chemo nurse explained to us the reasoning behind it. It's just that this Dr. flat out lied to us or "mislead" us, whatever you want to call it. When we explained to him that Bill lives by himself with no other family in town and that we were his only family and lived 5 hours away, we really thought he would discuss the option that it might be better for Bill to move in with us and get his treatments here so that someone would be with him. But he made this whole thing sound like it would be a walk in the park and we know it isn't going to be. We are just beside ourself with worry. He will tell my husband he is fine, but then when I talk to him he will tell me that he feels horrible and can't get out of bed. Everyday he asks when are we coming back. It just breaks my heart. A week is a long time when someone you love is sick.

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I don't even know where to start to explain what a putz I think your FIL's onc is. You need a second opinion-- if he won't go then talk to his GP for some advice on what he can expect. Treatments are hard enough on young people-- they can take a major toll on an elderly person. What chemo is he taking?

My MIL was 83 when she was diagnosed with lung cancer. She did not want to do chemo and elected to have just radiation on her larger tumor (she had one in each lung). She felt well for the next 3 years and passed away at age 86.

Please go to www.onctalk.com and ask Dr. West about your FIL's diagnosis.

Welcome to our board.

Rochelle

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Thanks so much for everyones response. I guess I should fill in some of the holes I have created. First of all my FIL was diagnosed with Stage IV inoperable non small cell lung cancer. We were told that radiation is not an option for him. He is receiving a combination of Taxol & Carbol. He is taking a steroid and benadryl with the treatments to conteract the naseau. He also takes a pill the night before treatment and the night of treatment that is supposed to reduce nausea. The steroids of course are helping his appetite. As I explained before, he had his first treatment on Friday a week ago and will undergo his second treatment tomorrow. He lives in Waco, Texas and his oncologist is Dr.Okana. He is getting his treatments at the Central Texas Cancer center in Waco. We know nothing about this place. His lung Dr. recomended it because they are both affiliated and office out of the center. We live in Corpus Christi, Texas which as I explained is about 5 hours away. We are driving up on Thursday evening and having to return back home on Sunday. My husband and I both work and cannot quit our jobs. Both our bosses are very understanding, however, there are limits. Dr. Okana assured us that Bill would have no problem driving himself back and forth to treatments, but we wanted to be with him for the first ones. He ate wonderful on Friday and Saturday because I cooked three meals for him. He even said he had more of an appetite than he has had in years although he did admit to a slight bit of nausea on Sat. (He normally survives on a taco for breakfast and a sandwich at dinner.)On Sunday he told us he still felt quezzy. We came home. On Monday, he said he was just too tired to get out of bed and still slightly nauseous. This has gone on all week with him getting more and more tired. My husband left this morning to go up there while I stayed behind because I had to work all day.I am just concerned that if this is how he reacts after the first treatment, how will he handle the additional ones as I understand the side effects will intensify as he gets more of the drugs in his system.

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Hi Pat and welcome to the group...Of course sorry you had to find us but glad you did...

With that being said...I WOULD RUN OUT OF THAT ONC'S OFFICE WITH THE SPEED OF LIGHTNING....I've heard a lot of stories about different Onc's...but this one takes the cake...He doesn't even know what he is talkin about....He is so contadictive....I would try and talk to your FIL to get a second opinion and who know's..he may like the second one better...

Best wishes and prayers for all of you...believe me WE know how frightening this could be...but if you get a good doctor and a good game plan ..you can revolve your life around that and feel better about everything...

Good Luck...nonni

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Hi, Pat:

I'm one of those who always goes into a rant about the gloom-and-doom docs who quote outdated statistics for large groups of patients as if they were tailor-made for the patient at hand. But in my time with this group I've never read an account like yours. Though I'm convinced that an upbeat attitude and positive expectations are genuinely beneficial on a physical level, some of this onc's statements lead me to believe there's something else going on -- and I haven't the foggiest idea what it might be. You could meet with the doc alone and ask for his unvarnished opinion, but I somehow think that wouldn't accomplish anything. What's puzzling to me is that he could have easily made positive, encouraging statements to your FIL that were at the same time medically reasonable. If your FIL has tumors in both lungs and is therefore Stage IV, then statements such as these would be reasonable and (to me) encouraging:

"With tumors in both of your lungs, surgery is not an option, but we have plenty of ways to treat the cancer."

"We don't use the word 'cure' until someone has been cancer free for 5 years, but we can often manage it as a chronic disease for a long time or even indefinitely."

For what it's worth, here's my personal outlook as one with NSCLC adenocarcinoma stage IIIB, generally considered inoperable and incurable: While I would love to be cured, that's probably not in the cards for me, and at age 72, victory over cancer means keeping it beat back until I'm old enough to die of something else. To put it another way, my hope and expectation is to die WITH cancer, not FROM it.

You have an excellent grasp of the situation, having been through a cancer journey with your SIL. You'll see from my profile below that I had Taxol/Carbo on a 3-week cycle. I kept a lot of my side effect details in the profile for times like this. Comparing my side effects to others on the same drugs, I'd say my skin toxicities were worse than most but fatigue and other problems were typical or towards the mild side. I was never nauseous, and I was able to do something productive every day (some days much more than others). I "felt" okay to drive, but did not for a considerable period (about 2 months) because of chemo-induced vision problems -- could not read street signs, for example.

By the way, I grew up in West, about 15 miles north of Waco on Interstate 35. My parents moved from West to Waco and lived there until 1995, when my mom passed away and we were able to convince my dad to move to Hawaii to a senior complex near our home. He got his golf game back into shape and had a great time, eventually passing on just before his 87th birthday.

Aloha,

Ned

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