Life expectancy of Stage IV NSCLC

Jennifer16628

First of all...I have to say it is really very nice to hear from others going through this...I guess it helps to know there are others (unfortunately too many) people who know exactly what I am gong through and how I am feeling. Diane12......I will be thinking of you and your mother on March 8th - I pray everything goes just perfectly. The doctors keep telling my mom and I that stage one and two are considered curable where stages 3 and 4 are not. This gives me confidence that your mother will make a full recovery. I will be praying for the very best. An update after all of the appointments this week.....the radiologist believes he can still treat her tumor with radiation (there was some question because of its proximity to her windpipe and her heart). So...she is scheduled for seven weeks of radiation .... 5 days a week.....along with Chemo for 6 weeks followed by another round of chemo a month later. The first round of chemo is going to be Cisplatin (Platinol, Cis-Platinum, CPDD, DDP, PDD) and Etoposide (Vepesid, VP-16). The second round of Chemo is Docetaxel (Taxotere). Then somewhere in the mix (they have not decided when exactly yet) they are going to throw in the pill Tavotere (sp?) for her to take indefinately. It looks like all of this is going to start in about two weeks. My mom has all of the prepping appointments, a PET scan, more CT scans, labs, etc. scheduled during those two weeks. It is amazing just how mentally and emotionally exhausting this all is. Good luck to all...I will keep up with reading the posts....I look forward to it.

Diane12

Jennifer, thank you for the kind thoughts. I agree, it's been really nice and affirming to have this board as a sounding board, and to know that we are not alone in this battle. I hope all the prepping appts for your mom, before she starts treatment, go well and there are no surprises! Your mother really is very young, too young, to be facing this battle but it seems like she has a very supportive family...and that means so much!

My mom's latest scare was the possibility that she might have a pneumonia, which would delay her surgery, but her xray on thursday came back clean and she will have another one tomorrow and then we 'should' be cleared for surgery. My family has already lost 2 brothers young (34 y/o in 1993 and 44 y/o...who just passed away 4 months ago!!), and we can't imagine losing mom now!

All the best to everyone here.....

Rob · New User Joined: 06 Mar 2006 Posts: 3 Location: Suffolk UK

My wife was diagnosed with stage 4 nsc lung cancer in December, it had already spread to lymph nodes, Ribs and skin. We are on our third Chemo regime, thats 4 months so far. She's very tired some days but we are fighting on.

catherine · New User Joined: 07 Mar 2006 Posts: 9

My significant other was diagnosed with NSCLC on Feb 22 2006. We have spent the last four years building a house together and obviously this is not what we had planned - we haven't even had the housewarming yet. They are still deciding if it's 3A, 3B or 4. He has four more tests scheduled this week. Until reading this I had no idea how quickly things could deteriorate - the websites and other info are much more upbeat, but apparently not very realistic. My fear is by the time they get around to figuring out how bad he is, he will have hardly any time left. Anyone know a website with good advice and information? Thanks. One of the hardest things is he doesn't want anyone else to know, which I feel I have to honor at this point.

Rob · New User Joined: 06 Mar 2006 Posts: 3 Location: Suffolk UK

[quote="catherine"]My significant other was diagnosed with etc,
Hi, Good luck with the tests, there is a huge difference in the stages or so I believe and the results will give you a better idea.
I found that at the stage you are (my wife was unfortunatly stage 4 with lots of associated cancers) the best thing was to ask lots of questions of your consultant and we wrote these down prior to the results meeting. This meeting was traumatic for us and looking back we are both glad that we gained some knowledge. After a lot of tears, I found a small space when my wife finished with the nurse to ask certain questions on my own and gained a little knowledge that we both agreed that only I should know.
If you go to the Cancer backup site they publish lists of questions for you that you may wish to ask at the meeting or later on.
Im based in the UK and find one to one meetigs with Macmillan nurses, who are very honest and open, of great benifit. If you want to discuss this more, just say the word but I wish all the luck in the world, but saving a bit for my wife, to both you and your spouse. Remember everyone is different and their are no really hard and fast rules.

Spot · New User Joined: 09 Mar 2006 Posts: 1

hi everyone!!!!

my story relates pretty much to Diane12.....
my father had a mild heart attack in July 2005!
While the doctors were treating it they noticed a spot on his lung which they later diagnosed as lung cancer!!!
He had a lobectomy where his middle right lobe was removed...
The histology results came back saying that surrounding area and lymph nodes are clear..... We were completely convinced that that was the end of the cancer.............
For the past few weeks my father was complaining of humming in his ears, headaches and loss of balance....
Things got worse when he started to vomit for no apparent reason....
After a CT the physician tolds that my father had a brain tumour which considering the history of lung cancer, it should be a metastase or a secondary brain tumour and also a recurring spot in the lung....
It made me feel terrible specially after the invasive operation my father endured to remove the cancer from the lung......
We are now being advised to have the tumour removed and to have radiation to try and contain the spread......
My question to the doctors was how was it possible if the lymph nodes are clear and the cancer was removed, to have come back like this?
I was told that you never can be sure with this disease.....
My father had the lobectomy in September 2005, diagnosed with brain cancer in March 2006.............

Best wishes to everyone....

catherine · New User Joined: 07 Mar 2006 Posts: 9

Just got the results of the brain MRI. He has a lesion. Assuming this means surgery is out and chemo and radiation are next. Anyone have suggestions of questions to ask? Somewhere I read someone saying if they knew what the radiation was going to be like they would have skipped it.

Jennifer16628

It has been a week since I posted last. Diane12.....there is not a new post...I am praying that the surgery went well this week for your mom. My moms most recent testing showed a suspicious spot on her voicebox but everywhere else is clear (bones, breast, etc.) YEAH! She is scheduled to start the chemo and radiation in 8 days. I am very scared for that to start since they say it will get worse before it gets better with the treatment. I guess the inflamation from the treatment actually makes it more difficult for the first week or so. I know it is critical that the treatment starts soon though as my mom says she feels like she is suffocating more and more every day. It is amazing because only a few weeks ago my mom was fine...or so it seemed....she is going downhill fast. I have read that it can happen this way but it was hard to believe until now. She just told me that she thinks she has pneumonia again so I am taking her in the morning for an x-ray. To everyone else....I am sorry and good luck. Keep posting....

Diane12 · Posted: Tue Mar 14, 2006 10:48 am Post subject: Summary of Mom's Surgery

Rob, Catherine, Spot, Jennifer - I am thinking about all of you and hoping that your loved one will get the treatment they need and beat this illness! Gosh, I could relate to something in every one of your posts, so thanks for sharing. Spot, you said something that struck me recently. Mom just had surgery on march 8 and I am petrified that even after having gone through this horrible surgery that this dreaded cancer will show up again...god, I hope not!!!!

Here is the summary of mom's surgery (hope it's not too long!):

My mom had her surgery on March 8 as previously scheduled, but even up until the day before the surgery, we were still not sure she would be able to have it because her white blood cell count was really high, but they had eliminated that she had a pneumonia or urinary tract infection from the x-ray and blood tests done the day before so they allowed the surgery to go on as scheduled. Thank god, because it had been such an emotional fight to get to the surgery day and if it would have been delayed, it would have been such a big let down for all of us, especially mom, who had prepared herself to face it on the 8th.

The surgery went really well, and the only big surprise was that instead of just doing a resection of her lung to remove the cancerous tumor, they had to do a total lobectomy of her right lower lobe and removal of the surrounding lymph nodes because the tumor was at least triple the size of what we were told it was on February 2nd. We were told it was 3cm or the size of a half-dollar during her staging meeting, but the lung surgeon said it was more like the size of a peach. Apparently the way it was growing and was attached was not picked up on her January 27th CT scan. However, we later learned that a 3-D Spiral CT Scan would have shown the true size of the tumor, and shown how it was growing.

The day of the surgery was probably the longest and most emotional day of my life! We (six family members) checked mom into the surgical admission at 11 am and sat there with her until they took her back to Pre-Op at 2 pm, after which they sent us to a Family Waiting Lounge where we were given a buzzer/pager, which they would use to buzz us to give us updates, etc. There was also a monitor that listed the patient and listed times when they went to PreOp, OP, Recovery, ICU or to a Room. Well, the hours passed with no update and we were really getting worried but then on the monitor it read that mom went into the OP room at 4:38 pm. Then the nerves really set in, and at 5:40 we got buzzed and told that mom’s surgery had started at 5:36 pm. At 7:45 pm or so, we were buzzed again and told that mom’s surgery was over and they were closing up her incision, and that her doctor would either be down in person or call us on the phone (we had to leave a cell phone number for him) to talk to us. Well, 9:00 pm came and we never heard from the doctor, and then we got kicked out of the Family Waiting Lounge and sent down the main hospital lobby, and told the doctor would again come see us in person or call us on the phone. The time continued to pass on with no word from the doctor and at 10:30 or so, we were told that mom would be going to a room on such and such a floor and we could go and wait in a family lounge near the room. We got to the family lounge near mom’s room and were shocked that it was not ICU!!!?? Finally at 11:30, a doctor (not the main surgeon) who had been in the surgery came to see us, and she didn’t have a lot of information other than they had to do a lobectomy and that mom looked really good and was talking! We were scared and excited by this news! We were scared because a total lobectomy had been ruled out during her staging/opinion meetings because of her already low pulmonary function (left lung is almost completely diseased) going into surgery so we worried (still worrying) what this would mean for her breathing on her own…and we were excited because mom had not only come through the surgery and was still with us but that she was not on a ventilator (her biggest fear) and was actually talking!

Shortly after midnight, mom was in her room and we could go in and see her. She was alert and her usual feisty self – we felt we had been given a miracle (still feel that way)!

Since surgery and for the past week in her recovery, she is having normal ups and downs, and a few scares here and there, including her blood pressure going dangerously low one night, and atrial fibrillation occurring during the night for the first couple of nights. She still has a chest tube in (to drain excess blood and fluid and keep proper air pressure in her lungs) because air is still leaking from the chest incision. Another little bump is that mom is not coughing up enough mucous on her own so she had to have a bronchoscope yesterday where they manually removed some of the mucous but there’s still a lot in there and she will have to work on trying to get it out. The fear is that she might get pneumonia from all the mucous so it’s important to get it out. Another very unsettling thing for us but one that is normal after lung surgery is that she is having a very hard time catching her breath just from the slightest exertion, such as getting up from her bed and situated on the commode, which is 2 feet away. And we noticed that initially after surgery she was getting 1 liter of oxygen, and last night it was up to 4 liters. Hopefully with more time and some respiratory therapy she will be less and less dependent on the oxygen.

Currently we are all just waiting for the next step, and wondering if she will be released to go home or possibly be sent to a rehab for a week or so. We are also trying to figure out what she will need once she gets home, and hopefully we can get this information from the hospital before her release.

We are thankful for each day we have with mom, and holding steady with guarded optimism that she is going to beat this illness, and win this battle!

THINKING OF ALL OF YOU AND YOUR LOVED ONES AND HOPING FOR THE BEST!

catherine · New User Joined: 07 Mar 2006 Posts: 9

I find these posts so very helpful - everyone please keep writing. Thomas has now had a zillion tests and has an appointment next Tuesday with the oncologist to get started on chemo and radiation. Time is creeping by so slowly it's driving us nuts. He has tumors in his left lung and a lesion on his brain, so we are assuming that's Stage IV. After chemo and radiation maybe there will be surgery. Everyone is very upbeat but I don't think we're getting the straight story. The statistics I've read aren't happy. How do we get a straight answer, and from whom?

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

catherine,

Go to http://www.nccn.org/ and follow the links for treatment guidelines for the particular type of cancer.

It gives a fairly good idea of what treatment decisions should be made and in some cases the prognosis.

Mike

catherine · New User Joined: 07 Mar 2006 Posts: 9

Mike, thank you so much - very helpful site. Anyone have a suggestion for a site that accurately gives an idea of what to expect with treatment options - how chemo really makes you feel, side effects of radiation etc? Thanks so much everyone.

Jennifer16628

hello again. Catherine....I am sorry you are in this situation, but I have to thank you for asking the questions you are. I believe I have been pretty thorough in asking all of the different doctors the necessary questions for my mom but you have led me to thinking of others. I think my biggest one right now is whether or not a P.E.T. scan can detect cancer in the brain. Does anyone know? I know she has not had any other test to check her brain. She has had a CT scan of her abdomen and chest (multiple times) and x-rays of her chest, and then the P.E.T. scan. I have been pretty hopeful and upbeat about everything (considering she was told she only had 4-8 weeks), but tonight I am struggling - the emotional side I suppose Sad

. The doctors just put her on prednisone and will be evaluating her tomorrow for oxygen. Her treatment doesn't start for 5 more days and quite frankly....I am terrified. Enough of all that Smile

. Have you found a site that discusses the REAL effects of the chemo and radiation? I would be very interested in learning that as well. I have looked and haven't found much. Best wishes to everyone and thank you for all of the questions, comments, answers, and advice.

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

Since each person may react differently to a given chemo agent, one way to see all of the possible side effects is to look at the physician's prescribing information for each agent you are taking.

For example you can go to http://www.gemzar.com/index.jsp and use the precribing link at the bottom of the page.

For this particular agent the PDF file has Table 5 which lists the possible side effects. Most people are aware of the common side effects such as nausea, but are less familiar with renal failure or hepatic failure.

http://health.yahoo.com/centers/radiation_therapy/3 has information on radiation side effects and radiation treatment in general. I notice that this site does not list cellulitis, but this is a potentially serious side effect of radiation treatment.

Diane12

[quote="Jennifer16628"] I think my biggest one right now is whether or not a P.E.T. scan can detect cancer in the brain. Does anyone know? I know she has not had any other test to check her brain. [quote]

Hi Jennifer - no, a PET scan cannot detect cancer in the brain - your mom needs an MRI of her brain. All the best to you, your mom and your family! Will be thinking about you.

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