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Stage IV Lung with Mets to the brain - should we even do chemo?

lundgjosie
Posts: 4
Joined: Dec 2009

Hello all supporters out there. My mom was diagnosed two months ago with Stage IV Non small cell lung cancer that metastasized to her brain. She had emergency surgery to remove the brain tumor and two gamma knife procedures to get rid of the other small tumors in her brain. She is feeling in good health so far but fatigued. The only other cancer she has is in her lung and has not spread to any other organs.

The doctors have told us that this is terminal, but that she should still consider chemotherapy to reduce the lung mass and improve quality of life. The docs said that she is in good health but this is a "poorly differentiated endocarcinoma" and it spreads quickly. Theysaid she could start seeing complications from the lung in the next two months. I think the idea is that the chemo would be considered palliative care and it may extend her life a little more.

My mom is very much interested in quality of life over quantity and is not sure she wants to move forward at all with chemo. WE have seen many friends pass away from complications from chemo.

I am wondering if anyone else out there had a similar situation and what did they do. Did you take chemo or not?

Any thoughts or information is very appreciated!!

kintango
Posts: 3
Joined: Dec 2009

It is so difficult to figure out what to do. Everybody reacts so differently to chemo. I have lung cancer that has metastasized to the brain and liver. I underwent radiation to the brain and have had 4 sessions of chemo. I am 61 years old and have had no ill side effects from the chemo. You want to prolong your life as long as you can I guess. Radiation oncologist told me in the beginning when I was hesitant about the chemo that you can quit it any time you feel like you can't take it but is was worth trying so that's what I am doing. My quality of life is not the same, fatigue, etc. but it's not terrible. Maybe she could just try it once. My lesions have gone down in size from it. I was diagnosed as terminal but things can happen I suppose. You just never know. The doctors just have stastics they go by to predict these things. I hope she can figure out how she wants go proceed. It is such a shock and unreal situation to get news like that. Wish you both the best.

lundgjosie
Posts: 4
Joined: Dec 2009

thank you so much for your reply and sharing your story with us. The doctors did tell us that it didn't hurt to try and it is helpful to know that you survived it so far!

kintango
Posts: 3
Joined: Dec 2009

It is so difficult to figure out what to do. Everybody reacts so differently to chemo. I have lung cancer that has metastasized to the brain and liver. I underwent radiation to the brain and have had 4 sessions of chemo. I am 61 years old and have had no ill side effects from the chemo. You want to prolong your life as long as you can I guess. Radiation oncologist told me in the beginning when I was hesitant about the chemo that you can quit it any time you feel like you can't take it but is was worth trying so that's what I am doing. My quality of life is not the same, fatigue, etc. but it's not terrible. Maybe she could just try it once. My lesions have gone down in size from it. I was diagnosed as terminal but things can happen I suppose. You just never know. The doctors just have stastics they go by to predict these things. I hope she can figure out how she wants go proceed. It is such a shock and unreal situation to get news like that. Wish you both the best.

kintango
Posts: 3
Joined: Dec 2009

It is so difficult to figure out what to do. Everybody reacts so differently to chemo. I have lung cancer that has metastasized to the brain and liver. I underwent radiation to the brain and have had 4 sessions of chemo. I am 61 years old and have had no ill side effects from the chemo. You want to prolong your life as long as you can I guess. Radiation oncologist told me in the beginning when I was hesitant about the chemo that you can quit it any time you feel like you can't take it but is was worth trying so that's what I am doing. My quality of life is not the same, fatigue, etc. but it's not terrible. Maybe she could just try it once. My lesions have gone down in size from it. I was diagnosed as terminal but things can happen I suppose. You just never know. The doctors just have stastics they go by to predict these things. I hope she can figure out how she wants go proceed. It is such a shock and unreal situation to get news like that. Wish you both the best.

Laura88
Posts: 47
Joined: Oct 2009

Hello -- I just feel a need to respond to these posts -- I am 53 years old and was diagnosed in May of this year with Stage 3B adenocarcinoma of the left lung. Non-operable. At first it was thought it was Stage IV with a rib lesion, but thank God that found to be an old injury and not a lesion. I went through 18 weeks of chemo and 8 weeks, five days a week of radiation at the same time towards the end of chemo. I was very fortunate and did pretty well with few side effects until the last few weeks. I finished treatment in October. I just had my first CT scan -- results amazing. I heard the words "remission" and amazingly "let's revisit surgery". I saw the surgeon last week. I underwent a PET yesterday - no results yet. If it is clean I go to surgery to have my lung (the whole lung removed). I am so grateful I can never even put it in words. Things looked so bleak for a little while -- I could not look at my grandbabies without crying. I am so hopeful right now for a long future. I feel great -- almost back to baseline. I am not looking forward to surgery, but I know it is my best hope to beat this for good and I hang on to the thought that six months ago I never thought I' be making this surgical decision.

My best to you -- please let us know on-line how you are.

PBJ Austin
Posts: 347
Joined: Mar 2009

Thank you for posting your news!! Please do keep us posted and I wish you well on the PET results.

Wishing the best to the rest of you as well.

Laura88
Posts: 47
Joined: Oct 2009

Hello PBJ -- well, PET results not so good. The lung and lymph nodes seem okay but they found abnormality in pelvic bone area that was not there six months ago, so off I go for an MRI. Boy -- always something to worry about. Anyone had any experiences with false positives?

lundgjosie
Posts: 4
Joined: Dec 2009

Thank you so much for sharing your experience and giving us some hope for the future. It is a difficult road to travel but certainly helpful when you hear about some positive news! Take care of yourself!

MommasGirl527
Posts: 8
Joined: Dec 2009

Lundgjosie:

My mother is in almost exactly the same circumstances. She is 62 and was just diagnosed two days before Thanksgiving. So far only radiation and Decadron, but she is having a PET scan on Saturday morning and then we meet with her oncologist on Tuesday.

I hate the term Palliative Care. Makes me sick! I have done a LOT of reading on treatments and some are more aggressive than others. I guess once we have the PET results we can decide on which way to go.

You know, the weirdest thing about this is that her lung tumor is pretty small, but the cancer really aggressively spread to her brain. She has 4 tumors there, and the largest is on the brain stem. It is inoperable by traditional standards, but she would be a candidate for Gamma Knife, if her oncologist thinks it's appropriate.

I'm just keeping my fingers crossed, praying, and seeking advice from any reputable place I can find. I wish I could say I am hopeful all of the time, I"m not. I'm sad, scared and confused most of the time. She has always been very healthy, and this is a tremendous shock.

I'll keep you and your mom in my thoughts and prayers.

Patti

lundgjosie
Posts: 4
Joined: Dec 2009

Wow I am so sorry you are experiencing this terrible news. My mother's situation is very similar where the lung mass is small but it is the type that spreads quickly. She had surgery to remove the mass in her brain and two gamma knife procedures. I have to tell you that the gamma knife procedure was fairly easy and not painful. My mom is a little tired from it but still getting around. She is actually on vacation now in the Carribean!

Hang in there and I hope you get your answers. I am glad that we found this forum to help share information.

MommasGirl527
Posts: 8
Joined: Dec 2009

I forgot to mention, my mom is being treated through Un. of Penn. Very reputable, but their protocol may be different from others. Fox Chase in Phila. has a pretty aggressive approach with chemo - perhaps more progressive in treating this exact scenario.

I know I will seek a second opinion from them...you may want to do the same with your mom.

I wish you, and us all well in this battle. I hate this disease!

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

My husband recently passed away from stage IV adenocarcinoma. Looking back on all the suffering he endured from the chemotherapy treatments I wish he had chosen quality over quantity. He only survived 9 months from diagnosis and was constantly having to get blood transfusions, extreme fatigue, wouldn't eat, vomiting, etc etc etc. He was even hospitalized five times.

I've told my own doctor that if I am ever diagnosed with cancer I chose not to treat. I wish to spend my life with quality.

Everyone has the right to chose and I understand that but based on what I saw my husband endure I will never fight a disease that's going to take me in the end anyway.

PBJ Austin
Posts: 347
Joined: Mar 2009

Oh dear Michelle, I knew he was very sick but this is the first I'm hearing of his passing. I'm so very sorry for you and all who loved him. My thoughts and prayers are with you and yours during this difficult time.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I have been following your posts without response, worrying more and more that you are falling into depression and despair and this is the final straw.

If I have not previously responded, it is because I could not imagine what I might say that could alleviate the burden of your loss, my friend.

But now I cannot.

I am, first and foremost, disappointed that you of all people do not recognize and honor the nature of your husband's fight. To say that you wish he had chosen 'quality over quantity' is to insinuate that he did not do exactly that, and, further, to insinuate that his time with you prior to the end days were not quality days. You sell yourself short, Michelle, and you sell him short, too.

There is no telling how long he might have lived without the intervention and extension provided by his palliative care, Michelle. But he chose it, and he chose it so that he could have more time with you and with life, I would surmise.

He certainly did not choose his route in order to be a continuing burden to you or to enjoy further pain and suffering without some reward.

As obvious as it seems, let me say: we choose to live because it seems preferable to the unknowable alternative, at least for now, regardless of faith.

And, Michelle, we choose to live because we love and are loved.

Moving on: to declare to your doctor that if you are diagnosed with cancer you simply want to die (not treat, as you put it) is a problem in several ways, and I know, or hope I know, that you know I am really speaking to you as someone who cares for you and all who enter these halls of frequent agony.

First and foremost, it is a disservice to your husband, who fought like heck to stick around. It is to dishonor all that he stood for in his battle against cancer. It is to refute his valiant effort, to nullify and negate it. Eventually, Michelle, and I am somehow sure of this, you will recognize that and want to live at least in part to honor that.

Second, you are presuming you know what you will feel if such a diagnosis is made, long before the fact, and this is unfair to yourself. Not only is such a declaration bad for you in and of itself (DO NOT walk around believing you are going to get cancer!) but it makes an insulting judgment about yourself, that you are not capable of growing, of moving on, of coming to new horizons as time passes, of CHANGING YOUR MIND.

Third, you are presuming, incorrectly, that what your husband experienced is what you would experience. That is clearly a supposition of the worst order, my sweet friend.

Fourth, and finally, you send a message to cancer survivors who read your post that there is nothing but a short candle to blow out, and that they might as well get it over with. I know this is not your intent. I know that you are speaking only of yourself, and I know that you are speaking in a moment (a time) of despair and seeming hopelessness. But that is the message, intended or not.

Michelle, you are depressed. Clinically so, I would advise. Your despair and your loneliness and your apparent wish for the end are clear markers of clinical depression.

Please, please, my friend, whether through church or some professional thing, get some advice, get a listening ear, get a hug, get some help with that.

This world needs people who care as you do, with such passion and loyalty and love.

Honor your husband, Michelle, by carrying on his spirit and his will to live. Take that out to the community as a beacon of good rather than a white flag of defeat.

You are up to it, Michelle.

Take care,

Joe

Kathy09's picture
Kathy09
Posts: 99
Joined: Jun 2009

Sorry to hear of your loss. I too watched my father suffer after a fight with cancer. I am now in a fight with it. At this point I am feeling exactly like you I will take the quality over the quanity any reoccurence I'll enjoy the time I can. Being sick all the time is not the way to go.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

For what it's worth, lund, your comment that you know of many people who have passed away from complications of chemotherapy strikes me as provocative and without merit, regardless of whom you know that died of cancer after receiving such treatment, and I say that with the kindest intent.

People who receive chemotherapy, after all, HAVE CANCER, and there are some odds that they will not live, some of them.

My neighbor, a delightful lady who came to me when she discovered that I had cancer in my lung because she also had lung cancer, offered me some green tea and advised that I turn down chemotherapy. Her reasoning was that she was watched her brother die of pancreatic cancer and was convinced that the chemotherapy did him in.

Today, having ignored her advice and her tea (not that the tea is without merit), I am here and she is not.

That said, and I had to get it out, since it is not a good idea to suggest that people avoid chemotherapy when it is recommended by doctors that you trust, I do believe I understand your mom's dilemma.

My mom died of brain cancer, metastasis of a breast cancer of more than 20 years earlier. At the time of the brain diagnosis, she was fighting a new battle with ovarian and giving it all she had. When this all went to her brain, though, she ultimately hung up her guns and said enough is enough.

I understand, at least to some degree.

It is a most personal decision, one that your mom must make on her own. When my mom made it, we were of course adamant that she reconsider, at first. But she was right.

There is a time.

I do hope that mom is not thinking in terms, however, of the chemo alone. It is possible to live comfortably with chemotherapy for years, many years even, depending on the disease, of course. (And, yes, I know: your mom's docs have talked of terminal and palliative.)

Life is precious.

I wish your mom and her family the very best, and am hopeful that whatever decision she makes is one she is completely comfortable with (while I am opting personally for the chemo :)).

Take care,

Joe

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