when to get a 2nd opinion

jejohn

jane brindle said:

to jejohn and joanie
Please keep conversing in this discussion board. I am within 30 days of my cancer diagnosis: Stage 4 lung with mets to the adrenals, and brain. Mine was diagnosed on 3/8/11 because I lost my ability to use my right leg and hand. One brain lesion in the parietal lobe was the culprit. Had Gamma Knife procedure to deaden the tumor; I'm told for now it is dead/ineffective. However, adenocarcinoma of the left lung has completely shut down my left lung. I've had 8 out of 13 direct radiation treatments.

I have had a PET scan but the results given to me were scant...some uptake in the larnyx, spine/back but mostly chest.

I'm so new at this, that I am very scared at times, don't know what to do, yet know that I need to fight, read, live and move forward.

Joanie and jejohn: you both seem so open and positive. You have no idea how you are needed and how in just a few visits to this site have helped me to hear your comments.

I wonder about second, third and 5th opinions. I live on the East Coast...Sloan Kettering, Johns Hopkins, Cancer Treatment Centers....

Any experience or information we all share, the better we can all fight.

Thank you, for being on this network.

Jane

Joanie and Jane and anyone!
Hey! Hope yall are doing well. I am feeling fine, and I had no problems with my new chemo, taxotere. I asked my dr. and it is in the same family as taxol. I asked him lots of questions Friday, and he said he was fine if I wanted a second opinion. He also said with the technology we have today, he would know if there are any new drugs or anything out there that could help me. I feel pretty confident in all he said. It helps to hear what your doctors say so anytime you want to share, please do!!

I had a good weekend visiting with my 20 year old daughter at The University of Alabama. It was parents' weekend, and I was so glad I was up for all the functions. It helps to just get away from everything at times.

Jane, I think being open and positive helps so much. I must admit, though, that after my last PET, I was not in a good place. I had had only good news until then, and it set me back. But I will not give up, and I am praying everyday for a cure and that my new chemo will work. Joanie, your posts about 6 year survivors brought me to tears. I want that to be me!

Hope to hear from yall soon.

JoanieL

jejohn said:

Joanie and Jane and anyone!
Hey! Hope yall are doing well. I am feeling fine, and I had no problems with my new chemo, taxotere. I asked my dr. and it is in the same family as taxol. I asked him lots of questions Friday, and he said he was fine if I wanted a second opinion. He also said with the technology we have today, he would know if there are any new drugs or anything out there that could help me. I feel pretty confident in all he said. It helps to hear what your doctors say so anytime you want to share, please do!!

I had a good weekend visiting with my 20 year old daughter at The University of Alabama. It was parents' weekend, and I was so glad I was up for all the functions. It helps to just get away from everything at times.

Jane, I think being open and positive helps so much. I must admit, though, that after my last PET, I was not in a good place. I had had only good news until then, and it set me back. But I will not give up, and I am praying everyday for a cure and that my new chemo will work. Joanie, your posts about 6 year survivors brought me to tears. I want that to be me!

Hope to hear from yall soon.

jejohn
Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

jejohn

JoanieL said:

jejohn
Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

Join Facebook!!
So glad your treatment went well. I agree that water helps. My next treatment is April 21. I have a Zometa treatment April 18. Do you get those? They are for your bones. How long ago ws your dx? Mine was in August.
Are you on Facebook? It is a good way to keep in touch. I really enjoy it. Let me know if you are and if you are not, check it out! Would love to see pics of your grandchild.
I havent been on chat much. Will try to do that soon. Thinking and praying!!!
Talk to you soon!

jane brindle

jejohn said:

Joanie and Jane and anyone!
Hey! Hope yall are doing well. I am feeling fine, and I had no problems with my new chemo, taxotere. I asked my dr. and it is in the same family as taxol. I asked him lots of questions Friday, and he said he was fine if I wanted a second opinion. He also said with the technology we have today, he would know if there are any new drugs or anything out there that could help me. I feel pretty confident in all he said. It helps to hear what your doctors say so anytime you want to share, please do!!

I had a good weekend visiting with my 20 year old daughter at The University of Alabama. It was parents' weekend, and I was so glad I was up for all the functions. It helps to just get away from everything at times.

Jane, I think being open and positive helps so much. I must admit, though, that after my last PET, I was not in a good place. I had had only good news until then, and it set me back. But I will not give up, and I am praying everyday for a cure and that my new chemo will work. Joanie, your posts about 6 year survivors brought me to tears. I want that to be me!

Hope to hear from yall soon.

Hi There
Hi there jejohn, Joanie and everyone.

I was having a pity moment just now and logged on, started reading and immediately felt like I was part of a bigger, more positive group. Wow! The power of sameness and likeness!

I will be starting Chemo for the first time at the end of April, so I am very anxious and scared but listening to you guys makes me hopeful that if I pay attention to your experiences that I can minimize the bad stuff that I can't fully comprehend yet.

Also, what's been said about the CTs and PETs scans...right on the money. It's like I'm just waiting for bad news when I should be channeling my energies into positive fighting.

It is Spring Time in Pennsylvania, although our weather is somewhat bipolar: 75 and sunny one day, 45 and raining the next hour!

Thanks guys and I will talk to you all later.

grannysb

jane brindle said:

First reply in the Cancer Survivors's Network
Hello to everyone in this thread.

First of all, scared? Absolutely fear is overwhelming, loss of control and not knowing what to do phoobear. I am only 30 post diagnosis; found out through family doctor as well. I have Stage 4 metastatic lung cancer; mets to my brain and adrenals, although I underwent Gamma Knife radiation for the brain and am told that tumor is not longer alive or growing. Within the next 2 weeks of my diagnosis, I started radiation treatments to actually open my left lung. The lung is completely closed from a large tumor.

My diagnosis was the scariest time of my life and not one person told me I would live longer than a month. I spent too much time being scared and barely breathing.

I am coming out of the fog and thanks to chats like these, I see there are fighters, options, second opinions and things to do.

Take each day; think about Cancer but think about other things than Cancer. Embrace your faith, take comfort in family and friends and know that there are no rules......no right or wrong. No one knows what to say to you, or do for you.

We need to take comfort in each other...there are lung cancer survivors and there are miracles. We are they.

Jane

Amen Jane............Embrace
Amen Jane............Embrace your faith, take comfort in each other, there are miracles.......

JoanieL

jane brindle said:

Hi There
Hi there jejohn, Joanie and everyone.

I was having a pity moment just now and logged on, started reading and immediately felt like I was part of a bigger, more positive group. Wow! The power of sameness and likeness!

I will be starting Chemo for the first time at the end of April, so I am very anxious and scared but listening to you guys makes me hopeful that if I pay attention to your experiences that I can minimize the bad stuff that I can't fully comprehend yet.

Also, what's been said about the CTs and PETs scans...right on the money. It's like I'm just waiting for bad news when I should be channeling my energies into positive fighting.

It is Spring Time in Pennsylvania, although our weather is somewhat bipolar: 75 and sunny one day, 45 and raining the next hour!

Thanks guys and I will talk to you all later.

Jane back to you
Hi Jane,
I am glad you found us here! I think that the group of support and experiences help one get through alot of this! Have they told you yet what tx of chemo they will be using? The day before tx eat and drink as much as you can. The morning of tx do the same, eat and fluids. They say those that eat a big breakfast the day of tx do much better. Remember firstly to keep your fluids up. I find it to be much better to graze eat after tx for a few days. My first tx I will be honest here, I did very well and thought I had it beat, well days 3-6 after tx I was very sick. It was the 1st tx and I had to go to the ER for fluids, as I dehydrated. It never happened again I will tell you. I made sure that I took anti nausea meds with the first onset of sypmtoms after that. We all learn as we go what works better for us.
Yes, waiting for PETs and CTs certainly can be a rough time. One just needs to stay busy and time will go faster. I know this last one I had, I could feel changes b4 they found them. It was not at all a good feeling, as I needed to know what I had going on and what to do, but part of me just did not want to hear it either!
My daughter is coming with my new grand daughter (10 days old) to visit today. I am so excited to spend the day with them!
Your weather there seems like here, but we have you beat, rained all morning so far, gloomy and cold after being in the low 70's and are expecting a foot of snow, so they say by Fri. Yuck!!!
What day is your chemo scheduled for? My next one is on the 28th, so looks like they will be close to your schedule. Do you know how many days of tx you will be getting? I have a tx every 21 days. After this next one, I have another PET Scan. I am visualizing binding up the cancer cells and releasing them from the body and growing good healthy cells to ward off cancer cells. I am looking for the miracle too! Keep on fighting, stay positive, and do not let this dx's rule your life! Live it to the fullest, take care of yourself, turn your worries over, and let the skilled medical team take care of the needed tx. Our job is to stay positive and healthy! Have a great day!
Joanie

jejohn

jane brindle said:

Hi There
Hi there jejohn, Joanie and everyone.

I was having a pity moment just now and logged on, started reading and immediately felt like I was part of a bigger, more positive group. Wow! The power of sameness and likeness!

I will be starting Chemo for the first time at the end of April, so I am very anxious and scared but listening to you guys makes me hopeful that if I pay attention to your experiences that I can minimize the bad stuff that I can't fully comprehend yet.

Also, what's been said about the CTs and PETs scans...right on the money. It's like I'm just waiting for bad news when I should be channeling my energies into positive fighting.

It is Spring Time in Pennsylvania, although our weather is somewhat bipolar: 75 and sunny one day, 45 and raining the next hour!

Thanks guys and I will talk to you all later.

sorry about multiple posts
Hey Jane! My computer went a little crazy with all those posts. Annoying, Im sure. Sorry about that!
Hope your first treatment goes well. They gave me my first chemo very slowly so they could see how I would react. The anti nausea meds really worked, and the decadron, steroids, helped as well. I did not have any trouble and hope the same for you. I did not even lose my hair with my first round! It is getting mighty thin with my new chemo,taxotere. I might be wig shopping after all. Most of the time I like to go by myself to chemo. My family always objects, but I use the time to read, write thank yous and letters, and listen to my ipod. I never nap for fear of snoring or sleeping with my mouth open!!! I always reward myself afterwards by going to my favorite hamburger place and getting a burger, fries, and shake. I figure I deserve it!!!
The weather here in Alabama is great. My husband and I are going to the beach tomorrow for a few days. Our 26th anniversary is next week. The beautiful Gulf of Mexico is less than 3 hours from our house.
Are you on facebook? It is a good way to keep in touch.
Hope to hear from you soon.

jejohn

JoanieL said:

Jane back to you
Hi Jane,
I am glad you found us here! I think that the group of support and experiences help one get through alot of this! Have they told you yet what tx of chemo they will be using? The day before tx eat and drink as much as you can. The morning of tx do the same, eat and fluids. They say those that eat a big breakfast the day of tx do much better. Remember firstly to keep your fluids up. I find it to be much better to graze eat after tx for a few days. My first tx I will be honest here, I did very well and thought I had it beat, well days 3-6 after tx I was very sick. It was the 1st tx and I had to go to the ER for fluids, as I dehydrated. It never happened again I will tell you. I made sure that I took anti nausea meds with the first onset of sypmtoms after that. We all learn as we go what works better for us.
Yes, waiting for PETs and CTs certainly can be a rough time. One just needs to stay busy and time will go faster. I know this last one I had, I could feel changes b4 they found them. It was not at all a good feeling, as I needed to know what I had going on and what to do, but part of me just did not want to hear it either!
My daughter is coming with my new grand daughter (10 days old) to visit today. I am so excited to spend the day with them!
Your weather there seems like here, but we have you beat, rained all morning so far, gloomy and cold after being in the low 70's and are expecting a foot of snow, so they say by Fri. Yuck!!!
What day is your chemo scheduled for? My next one is on the 28th, so looks like they will be close to your schedule. Do you know how many days of tx you will be getting? I have a tx every 21 days. After this next one, I have another PET Scan. I am visualizing binding up the cancer cells and releasing them from the body and growing good healthy cells to ward off cancer cells. I am looking for the miracle too! Keep on fighting, stay positive, and do not let this dx's rule your life! Live it to the fullest, take care of yourself, turn your worries over, and let the skilled medical team take care of the needed tx. Our job is to stay positive and healthy! Have a great day!
Joanie

Hey JoanieL!
Enjoy that new
Hey JoanieL!
Enjoy that new grandbaby! How exciting! Is this your only one? I have 2 kids,24 and 20. Neither married. Hope your day is wonderful!!!

phoobear

jejohn said:

sorry about multiple posts
Hey Jane! My computer went a little crazy with all those posts. Annoying, Im sure. Sorry about that!
Hope your first treatment goes well. They gave me my first chemo very slowly so they could see how I would react. The anti nausea meds really worked, and the decadron, steroids, helped as well. I did not have any trouble and hope the same for you. I did not even lose my hair with my first round! It is getting mighty thin with my new chemo,taxotere. I might be wig shopping after all. Most of the time I like to go by myself to chemo. My family always objects, but I use the time to read, write thank yous and letters, and listen to my ipod. I never nap for fear of snoring or sleeping with my mouth open!!! I always reward myself afterwards by going to my favorite hamburger place and getting a burger, fries, and shake. I figure I deserve it!!!
The weather here in Alabama is great. My husband and I are going to the beach tomorrow for a few days. Our 26th anniversary is next week. The beautiful Gulf of Mexico is less than 3 hours from our house.
Are you on facebook? It is a good way to keep in touch.
Hope to hear from you soon.

2nd opinion
thanks everyone. you all are the greatest people. your faith has made me realize how much i have too be thankful for. go too onco today too find out what we do now. if he can not give me any thing too go on today other than there are disagreements as too where i have lung cancer or not. i am going too get another opinion as soon as i can get into emory. has anyone ever heard of markey cancer center in lexington ky. it is part of uk medical teaching hospital? thanks again and god bless each and everyone of us.

jejohn

JoanieL said:

jejohn
Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

...

...

jejohn

JoanieL said:

jejohn
Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

.

.

jejohn

JoanieL said:

jejohn
Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

.

.

jejohn

JoanieL said:

jejohn
Hi jejohn,
It is good to see your post and that your doctor has all the information available to him. I see that you are feeling more confident and that is huge! I thought your chemo was in the same family as my new one and it is. I am glad you enjoyed your weekend with your daughter. The best medicine is still to get out there and get going. Live each day to the fullest. I think we all lived in the fast lane and this took us down a knotch to stop and enjoy life, I know it did for me. I am glad your chemo went well. Mine did too, I am on the water, water and more water and that seems to have been the ticket. I had a few days of being very tired, and I went with what the body was saying and slept. Today is day 5 so I think I have done very well!!! Yippie!!! Tired I can do, sleep through treatment I can do! They say each chemo is better, so maybe next time I will be awake more. I hope so, as we have alot of concert tickets for the first two weekends in May.
I hear what you are saying about the setback with your PET, as mine was the same, and it was a kick in the seat alright, but had to kick myself and get moving again. Not always easy, but my outcome is much better when I stay positive and am ready to fight this. Keep searching the posts, and you will find alot of people at stage IV, that are doing very well, they are my inspirations, and I had the opportunity on chat with one that was 6 years+ on one of my very worst days and he lifted me up. I have not seen you on the chats, do you go on it at all? It seems that this week alot of people are waiting for results on PET's and CT's, in the same situation as we just have had. I find it nice to share there and people share in struggles too, and support one another. I know that with just going through it, I have a good ear where they are coming from. I also want to be 6+ years and more! I think time goes fast and staying positive and healthy, we can fight this! I plan to give it my all and more!
I am keeping you in my thoughts and prayers each day! I think that it is important to share what we can to make this fight easier and have support from those that are surviovors!!! I remember what my thoughts were years ago about treatment, and have learned firsthanded you do not know what you would really do until you have to come face to face with this dx's. You quickly learn never to say never! I just had a new baby grand daughter born on the 3rd. That was the first goal set last fall, and now that she is here and beautiful, I will have to set new goals to watch her grow into Ms Personality!!! I do not want to miss any of her first's! Take Care
Joanie

.

.

phoobear

phoobear said:

2nd opinion
thanks everyone. you all are the greatest people. your faith has made me realize how much i have too be thankful for. go too onco today too find out what we do now. if he can not give me any thing too go on today other than there are disagreements as too where i have lung cancer or not. i am going too get another opinion as soon as i can get into emory. has anyone ever heard of markey cancer center in lexington ky. it is part of uk medical teaching hospital? thanks again and god bless each and everyone of us.

lung cancer
just wanted too let every one know i did go too the onco today, and i do have lung cancer. i am sure all you brave and couragous people on here know what i am going through right now. i start chemo, and radiation this friday. at least we are going too do something before it gets a head start on me. i am scared of course, and i have cried a lot. i watched my mother pass away with this cancer. she found out too late. i hope i can be as brave as all of you are on here. i do have a lot of faith in god, so with that and you guys this should sustain me. love and prayers too every one.

sleepless in jersey

jane brindle said:

to jejohn and joanie
Please keep conversing in this discussion board. I am within 30 days of my cancer diagnosis: Stage 4 lung with mets to the adrenals, and brain. Mine was diagnosed on 3/8/11 because I lost my ability to use my right leg and hand. One brain lesion in the parietal lobe was the culprit. Had Gamma Knife procedure to deaden the tumor; I'm told for now it is dead/ineffective. However, adenocarcinoma of the left lung has completely shut down my left lung. I've had 8 out of 13 direct radiation treatments.

I have had a PET scan but the results given to me were scant...some uptake in the larnyx, spine/back but mostly chest.

I'm so new at this, that I am very scared at times, don't know what to do, yet know that I need to fight, read, live and move forward.

Joanie and jejohn: you both seem so open and positive. You have no idea how you are needed and how in just a few visits to this site have helped me to hear your comments.

I wonder about second, third and 5th opinions. I live on the East Coast...Sloan Kettering, Johns Hopkins, Cancer Treatment Centers....

Any experience or information we all share, the better we can all fight.

Thank you, for being on this network.

Jane

2nd, 3rd, 4th opinions
Hi Jane~ My Mom was DX on Jan.3, 2011 the day we will never forget...
She has stage 4 adenocarcinoma, lung, spine, brain and pelvis she is 60yrs young. She had brain surg. and than came home. We had her set-up at the cancer center in philly, however she said NO when on that fri. they called her house and cell 9 times that she felt like it was all on commission and no longer wanted to go there so I got her an appt. at Sloan Kettering. I worked my tail off to get everything that they said they needed in order for them to see her in 2 days. We got the opinion and they were amazing...they have there own pathologists right there so while were going through the process of filling paper work out or being examined there pathologist are looking at her slides to confirm etc.
Well he explained everything in detail and gave us papers on the chemos and what to expect.
He said for her to go on carboplatin/alimta and zameta IV every cpl of weeks and b12 inject. every cpl of weeks where the Onc in Jersey wanted cisplatin and everything else (cisplatin is harsh on the liver). He also said to have WBR for the 10-15 days, but her insurance will only pain for 10 so that what she got.

A letter was sent to her Onc and she made the change and so far doing well...
She just finished her 4th tx of chemo and sched. for scans on the 26th WE WILL CONTINUE TO PRAY! You really should get a 2nd opinion and have any pathology sent out for gene mutation. Lots of thoughts your way...Sleepless in jersey

JoanieL

jejohn said:

Hey JoanieL!
Enjoy that new
Hey JoanieL!
Enjoy that new grandbaby! How exciting! Is this your only one? I have 2 kids,24 and 20. Neither married. Hope your day is wonderful!!!

Grandchildren
Hi jejohn,
Thank You on my new grandbaby! I actually have 5 grandchildren now. The oldest is 11-1/2 years, and the youngest is just 11 days old. The youngest I had till this one was born is going to be 9 years old in May, so have not had a baby around in years. These are my 2 oldest children that have the kids. My other three children are 23, 18, and almost 17. Also, I am not on FB and do not know if I will, I have so many other activities I do not know I can add that in too. Maybe sometime, just do not know right now.
Have a super night!
JoanieL

JoanieL

phoobear said:

lung cancer
just wanted too let every one know i did go too the onco today, and i do have lung cancer. i am sure all you brave and couragous people on here know what i am going through right now. i start chemo, and radiation this friday. at least we are going too do something before it gets a head start on me. i am scared of course, and i have cried a lot. i watched my mother pass away with this cancer. she found out too late. i hope i can be as brave as all of you are on here. i do have a lot of faith in god, so with that and you guys this should sustain me. love and prayers too every one.

Phoobear Sorry To hear
Hi Phoobear, I am sorry to hear that your dx's was confirmed! I do honestly know what you are going through, and the rollercoaster of emotions that come right along with it. I am glad to hear they are going to get your tx going this week, no reason to waste time. I am sure you are scared and trying to absorb all the news and what is next. Can be very taxing. My mother also had this cancer and passed 14 years ago, and I was her caregiver. I can tell you the tx's have certainly change over the years. If I went by what she went through or how she did, I would send myself over the edge. So, I let go of that right away. Also each person is so different in how they manage and cope. Stay strong and positive as #1. Remember to start loading on your fluids and nutrition starting now. Also the morning of chemo, have a good breakfast and plenty of fluids. Make sure after tx you stay up on your fluids firstly and graze eat, small amounts frequently. If you are tired make sure you drink fluids, set timer or have someone wake you every couple of hours to drink fluids. I say if you can get your fluids and nutrition, sleep through the sleepy moments, keeps nausea away. Keep us posted and when you can join chat or leave message on the board. I will be keeping you in thought and prayers in addition. We are in it to WIN it! Did they say which chemos you will be using? When they do the tx, visualize the cancer cells coming together,and tell them to get out! See your tx working on them cells and prayer for healthy new cell growth to take its place. Take Care and keep in touch!
JoanieL

phoobear

JoanieL said:

Phoobear Sorry To hear
Hi Phoobear, I am sorry to hear that your dx's was confirmed! I do honestly know what you are going through, and the rollercoaster of emotions that come right along with it. I am glad to hear they are going to get your tx going this week, no reason to waste time. I am sure you are scared and trying to absorb all the news and what is next. Can be very taxing. My mother also had this cancer and passed 14 years ago, and I was her caregiver. I can tell you the tx's have certainly change over the years. If I went by what she went through or how she did, I would send myself over the edge. So, I let go of that right away. Also each person is so different in how they manage and cope. Stay strong and positive as #1. Remember to start loading on your fluids and nutrition starting now. Also the morning of chemo, have a good breakfast and plenty of fluids. Make sure after tx you stay up on your fluids firstly and graze eat, small amounts frequently. If you are tired make sure you drink fluids, set timer or have someone wake you every couple of hours to drink fluids. I say if you can get your fluids and nutrition, sleep through the sleepy moments, keeps nausea away. Keep us posted and when you can join chat or leave message on the board. I will be keeping you in thought and prayers in addition. We are in it to WIN it! Did they say which chemos you will be using? When they do the tx, visualize the cancer cells coming together,and tell them to get out! See your tx working on them cells and prayer for healthy new cell growth to take its place. Take Care and keep in touch!
JoanieL

hi joaniel, thank so much
hi joaniel, thank so much for the encouragement you gave me. it mades me feel so much better and gives me hope i can do this. i had my first chemo treatment yesterday,friday. i was there 7 and 1/2 hours. totally exhausted. i am taking taxol/ carbo. is this what most people take? monday i start rad. i took my sister every day for 31 days for this, so i do remember it did not take very long after all the waiting. i did not eat or drink the morning of chemo or take my medications. did not know what i was suppossed too do. i am trying too stay positive. i feel like you do. if i had too go through what my sweet mamma did, i could not do it. i am drinking as much water and juices as i can possibly hold. Does oj and tj help. i am trying too eat healthy as well. I have been weak today, but just rested. expect too start feeling a lot better in a day or so. one thing i wanted too ask did they give you steroids along with your chemo, as well as benadryl, and a couple of other things. i wonder why everyone does not take rad as well. again thanks too you and everyone on here for there encouragement. when it comes down too it we have our loving families, and they think they understand, but i do not think anyone knows what we are really going through, except for all of us. i am so glad i have each and every one of you. i will keep you posted god bless and be with us all. phoobear

dearfoam

jejohn said:

Thanks for the info. Helps
Thanks for the info. Helps so much to talk to someone. I am a 47 year old nonsmoking athlete who was hit with this diagnosis last August. I am trying so hard, but it can certainly get you down at times. Have you or do you know anyone who has had their tumor radiated? I cant get much info abt. that. Thank you so much for your time. Im glad you like John Hopskins. Where is that? I live in Alabama.

radiating in alabama
We just started radiation on my dad's tumors at UAB's Kirklin Clinic in Birmingham. He has lung and brain tumors. We are stuck in a situation where he only (but thankfully) has Medicare A for inpatient hopsital care and UAB awarded him with charity care insurance until his Medicare B kicks in in July. Have no idea how we'd go about getting a 2nd opinion when we can't go to another hospital. The radiation has had no adverse visible side effects after one week.

jejohn

phoobear said:

hi joaniel, thank so much
hi joaniel, thank so much for the encouragement you gave me. it mades me feel so much better and gives me hope i can do this. i had my first chemo treatment yesterday,friday. i was there 7 and 1/2 hours. totally exhausted. i am taking taxol/ carbo. is this what most people take? monday i start rad. i took my sister every day for 31 days for this, so i do remember it did not take very long after all the waiting. i did not eat or drink the morning of chemo or take my medications. did not know what i was suppossed too do. i am trying too stay positive. i feel like you do. if i had too go through what my sweet mamma did, i could not do it. i am drinking as much water and juices as i can possibly hold. Does oj and tj help. i am trying too eat healthy as well. I have been weak today, but just rested. expect too start feeling a lot better in a day or so. one thing i wanted too ask did they give you steroids along with your chemo, as well as benadryl, and a couple of other things. i wonder why everyone does not take rad as well. again thanks too you and everyone on here for there encouragement. when it comes down too it we have our loving families, and they think they understand, but i do not think anyone knows what we are really going through, except for all of us. i am so glad i have each and every one of you. i will keep you posted god bless and be with us all. phoobear

Hey! Just wondering how you
Hey! Just wondering how you are doing. Hope you are feeling good!