Overwhelmed: Lots of questions but I don't know where to go or what to ask.

Nina16

Hi all,

First, let me say thank you to everyone that has been participating on this board.  I have found both comfort and security in a few different places.  

My mom, a young 69 year old, was just diagnosed having squamous cell stage 4 NSCL lung cancer on Friday; our world was rocked to say the least.  We thought we took her to the ER to find out she had a serious cold, that she was overmedicated and we ended up being admitted.  The tumor measures a little more than 4 inches and it is pressing on her spine on two different vertebrae, which if it wasn't noticed and acted on would have made her a quadrepelgic.  When the biopsy happened Friday night, the pulmonologist said that he found more tumors in one of her major airways from the lung.  She started radiation right away.  She is on her 5th treatment with 5 more to go. She wil start chemo shortly after.  She is on oxygen 24/7, 3 liters at rest 5 liters when moving, if she is moving.  

I feel like there are so many questions that I just can't formulate so please bare with me as I am making this transition in my life and learning this new life for my mom.  

Is oxygen bad for cancer patients?  Will it damage the good tissue in the lungs?

Is it common for any movement what-so-ever to be tired for the rest of the day?

Is shortness of breath a new norm that we, as her family, have to get used to?  

What about sleeping?  She barely keeps her eyes open most of the day.  I assume this is normal?

Anyone use the AIM program (Advanced Illness Management, at least in NH that is what it means)?  Is this a good program?  Does this mean anything as far as her diagnosis.  As in her progression through the illness?  

The doctor said that her longest living patient with this illness is 5.5 years.  Our prognosis is 2 years.  I know that our doctor is not God, but is there anyone out there that can say differently?  

Chemo?  Does everyone agree this should be done?  One comment that was made was someone with good working lungs and are active will do well with chemo.  My mom is neither...thoughts?

 

I appreciate anyone that reads this and responds.  
Thank you so much,
~nina16

jorola

good questions Nina

First off I am sorry about your mom's diagnosis. I will admit i am not going to have a  lot to give to you for answers but more will chime in here with more experinces. But i do suggest you also sit down with your mom's treatment providers with this list andtalk to them about your concerns if you haven't already. After all they are the medical experts. But i get whyyouwant to hear from those who have been there too. FYI - my husband has squamous lung cancer stage 3b but has been NED since dec 2014 just so you have my background.

Is oxygen bad for cancer patients?  Will it damage the good tissue in the lungs? -honeslty- i am not sure on this

 

Is it common for any movement what-so-ever to be tired for the rest of the day? - treatment is exhausting for most, just really wears them down and with reduce lung function, less oxygen in the vlood the body tires easily

 

Is shortness of breath a new norm that we, as her family, have to get used to?  my husband has reduced lung function and yes easily gets winded - the new norm for him

 

What about sleeping?  She barely keeps her eyes open most of the day.  I assume this is normal?- my husband was very tired. would fall alseep atthe drop of a hat during treatment

 

Anyone use the AIM program (Advanced Illness Management, at least in NH that is what it means)?  Is this a good program?  Does this mean anything as far as her diagnosis.  As in her progression through the illness?  Sorry I am in Canada so i am of no help here

 

The doctor said that her longest living patient with this illness is 5.5 years.  Our prognosis is 2 years.  I know that our doctor is not God, but is there anyone out there that can say differently?  they told my husband he had 10% of making it a year on april 20, 2014, now he is ned - no evidence of disease. i am not saying that they are not right as i am not a doc and her cancer has spready badly nor do i want o give false hope. wantiwant ot tell you is enjoy each day you have with each other and make the most of it whether you have 6 months, 2 years or 15 years

 

Chemo?  Does everyone agree this should be done?  One comment that was made was someone with good working lungs and are active will do well with chemo.  My mom is neither...thoughts? it helped my husband no doubt there. whether radition or chemo or targeted immmune therapy everyone reacts differently hard to say until she tries it. again really talk with her doctors, see what she wants to do. it is her life/body.

Really don't know if i have beenmuch help here. BUt iwant you to know you are not alone. This can be a scary tough road but when you knwo there are others out there who stand behind you, even if virtually, it can help i find. Hop into the chatroom sometime and you can meets others.

Take care - strength sent your way

Jodie

Nina16

jorola said:

good questions Nina

First off I am sorry about your mom's diagnosis. I will admit i am not going to have a  lot to give to you for answers but more will chime in here with more experinces. But i do suggest you also sit down with your mom's treatment providers with this list andtalk to them about your concerns if you haven't already. After all they are the medical experts. But i get whyyouwant to hear from those who have been there too. FYI - my husband has squamous lung cancer stage 3b but has been NED since dec 2014 just so you have my background.

Is oxygen bad for cancer patients?  Will it damage the good tissue in the lungs? -honeslty- i am not sure on this

 

Is it common for any movement what-so-ever to be tired for the rest of the day? - treatment is exhausting for most, just really wears them down and with reduce lung function, less oxygen in the vlood the body tires easily

 

Is shortness of breath a new norm that we, as her family, have to get used to?  my husband has reduced lung function and yes easily gets winded - the new norm for him

 

What about sleeping?  She barely keeps her eyes open most of the day.  I assume this is normal?- my husband was very tired. would fall alseep atthe drop of a hat during treatment

 

Anyone use the AIM program (Advanced Illness Management, at least in NH that is what it means)?  Is this a good program?  Does this mean anything as far as her diagnosis.  As in her progression through the illness?  Sorry I am in Canada so i am of no help here

 

The doctor said that her longest living patient with this illness is 5.5 years.  Our prognosis is 2 years.  I know that our doctor is not God, but is there anyone out there that can say differently?  they told my husband he had 10% of making it a year on april 20, 2014, now he is ned - no evidence of disease. i am not saying that they are not right as i am not a doc and her cancer has spready badly nor do i want o give false hope. wantiwant ot tell you is enjoy each day you have with each other and make the most of it whether you have 6 months, 2 years or 15 years

 

Chemo?  Does everyone agree this should be done?  One comment that was made was someone with good working lungs and are active will do well with chemo.  My mom is neither...thoughts? it helped my husband no doubt there. whether radition or chemo or targeted immmune therapy everyone reacts differently hard to say until she tries it. again really talk with her doctors, see what she wants to do. it is her life/body.

Really don't know if i have beenmuch help here. BUt iwant you to know you are not alone. This can be a scary tough road but when you knwo there are others out there who stand behind you, even if virtually, it can help i find. Hop into the chatroom sometime and you can meets others.

Take care - strength sent your way

Jodie

Thank You

Hi Jodie,

Thank you for your feedback.  I appreciate it tremendously.  

So happy to hear about your husband!  He will stay in my prayers.  

I appreicate your attention to the questions; they do help.  We are meeting with the oncologist next week; we have already met with this lovely doctor numerous times.  She has stayed and answered all our questions but there are always more becuase we just don't know what to ask.  So I appreciate your experiences. 

We are taking one day at a time, on treatment at a time.  But I am a planner so I want to know it all now and make the decisions more precisely as they come; unfortunately, it doesn't work that way.  

Thank you for saying we are not alone because I feel like we are trying to navigate a dark room with no assistance.  

Take care,

Nina

jorola

Nina16 said:

Thank You

Hi Jodie,

Thank you for your feedback.  I appreciate it tremendously.  

So happy to hear about your husband!  He will stay in my prayers.  

I appreicate your attention to the questions; they do help.  We are meeting with the oncologist next week; we have already met with this lovely doctor numerous times.  She has stayed and answered all our questions but there are always more becuase we just don't know what to ask.  So I appreciate your experiences. 

We are taking one day at a time, on treatment at a time.  But I am a planner so I want to know it all now and make the decisions more precisely as they come; unfortunately, it doesn't work that way.  

Thank you for saying we are not alone because I feel like we are trying to navigate a dark room with no assistance.  

Take care,

Nina

also check out local support groups

I am glad i was able to help but there are many others who will be able to help you more on here. But i do also encourage you to check out local support groups as well - if it is even your thing. basically don't be afraid to seek help is what i am saying. it is a tough road you are on for your mom and you and your family and yes you don't have to do it alone. please come back here anytime.

also another tip - if you aren't already doing it - is to carry around a scribber wit the the specific purpose to write down questions as you think of them and take it with you to the doctor. appointments.  Often they just pop in your head and then try and think of them when you are in with the doctor right? that way you have them there and you can also write down the answers to be able to refer to whenever you need to and don't have to try to remember. You all have enough on your plate your brains are taxed as it is your memory won't be working so well.

Hang in there and thanks for your prayers and same to you