when to get a 2nd opinion

jejohn · March 2011

Hey! This is my first time to post on here. I have stage 4 lung cancer with met. to bones. I was on carbo, alitma, and avastin and after 4 treatments, I had an excellent PET in December. After 2 more treatments, my dr. took me off of carbo. My PET last week now shows my cancer has spread to several spots on my spine, where before it was only in my right arm. It has also spread in tiny spots to my lungs. I was so disappointed and feel naive and stupid for thnking I could get this disease in remission. My dr.had said he thought since I was doing so well, it could go in remission and he would radiate the tumor. I start a new chemo tomorrow. I dont understand why the tumor has not already been radiated or why he took me of carbo. I am just wondering if anybody else has been in this situaton. I am so down and am losing hope.

NayPaul · March 2011

whenever you feel you are not comfortable...
with the treatment plan or your doctor. I would always recomend a 2nd opinion at the outset. If you did not do that, then do it now. Its not always a matter of finding out other treatment options, sometimes it is a matter of confirming that you are on the right path.

JohnBinDC · March 2011

I had a second opinion
I got a second opinion after I was first diagnosed. I wanted to confirm the diagnosis and see if there was a different aoproach to treatment from one hospital to another. I agree with Paul, if you are not comfortable, then get a second opinion as soon as you can. We are dealing with our lives and can't worry about hurting one doctor's feelings by seeking a second opinion on treatment. Good doctors will welcome a second opinion.

Best wishes as you carry on your fight!

Regards

John

jejohn · April 2011

NayPaul said:
whenever you feel you are not comfortable...
with the treatment plan or your doctor. I would always recomend a 2nd opinion at the outset. If you did not do that, then do it now. Its not always a matter of finding out other treatment options, sometimes it is a matter of confirming that you are on the right path.

Thanks for your info. I
Thanks for your info. I guess I am just afraid that there is nothing else they can do, or that my dr. made a mistake that cant be undone. I just dont know what to do.

jejohn · April 2011

JohnBinDC said:
I had a second opinion
I got a second opinion after I was first diagnosed. I wanted to confirm the diagnosis and see if there was a different aoproach to treatment from one hospital to another. I agree with Paul, if you are not comfortable, then get a second opinion as soon as you can. We are dealing with our lives and can't worry about hurting one doctor's feelings by seeking a second opinion on treatment. Good doctors will welcome a second opinion.

Best wishes as you carry on your fight!

Regards

John

Thanks. What all treatments
Thanks. What all treatments have you completed? Ever heard of The Cancer Treatment of America in Chicago or Winship in Atlanta Ga?

JohnBinDC · April 2011

jejohn said:
Thanks. What all treatments
Thanks. What all treatments have you completed? Ever heard of The Cancer Treatment of America in Chicago or Winship in Atlanta Ga?

Treatments
I completed two rouinds of Cisplation/Gemzar and one round of Al;imta/Cisplatin. The cisplatin has some pretty sevre sidde effects for me, but I have been able to contend with them. I have heard of Cancer Treatment Centers of America. I have heard both pro and con. My treatment is at Johns Hopkins, which is where I got my second opinion. I use Tricare insurance (I am retired military) and I do not believe they will pay for treatments at Cancer Treatment Centers of America. I don't know why and have not asked as I am pleased with Johns Hopkins.

Best wishes always

John

jejohn · April 2011

JohnBinDC said:
Treatments
I completed two rouinds of Cisplation/Gemzar and one round of Al;imta/Cisplatin. The cisplatin has some pretty sevre sidde effects for me, but I have been able to contend with them. I have heard of Cancer Treatment Centers of America. I have heard both pro and con. My treatment is at Johns Hopkins, which is where I got my second opinion. I use Tricare insurance (I am retired military) and I do not believe they will pay for treatments at Cancer Treatment Centers of America. I don't know why and have not asked as I am pleased with Johns Hopkins.

Best wishes always

John

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.

JoanieL · April 2011

Same Situation Here
I am sorry to see that you are going through the same as I. I too, have the same Dx's was on Carboplatin, Avastin, Alimta, which was given once every 21 days. I then had a PET Scan the end of Dec. that showed spinal tumor was gone, as the one that was in the middle right lobe of my lung was gone also. The tumor in my femur had reduced some. They decided to start maint. on using Alimta/Avastin. This was done every 21 days, four times now. In Feb. I was having extreme pain start in my leg. The femur produced a second tumor and covered 2/3 or 80% of my femur. I just finished up on Monday with 10 radaition tx's. Last Sat. I woke feeing great, by afternoon I could barely move right arm and shoulder. I presented to the ER with severe pain. A chest ct with contrast was ordered. I right middle lobe pneumonia and a spasming trapezius muscle. Very painful, ER doctor knew I was having a PET Wed. morning and said we would see what that shows. Unfortunately, I have anew tumor in the right lung pushing the nerves. I have not recieved the full report on PET Scan, will get that Monday. I did see the radiation oncologist and he recommends 15-20 radation tx's to right lung. I am awaiting Mon. appointment as they will be switching chemo and he did not know if they would agree to do chemo and radiation at the same time. I just had that my last run as I did both and did fine. They say that the lung is different then the bone thought and is tougher to do both. I had been in severe pain and they have that now covered with meds. I was feeling very much down and at loss over this situation. Now that the pain is in control, I am ready to fight the fight!!! I have seen you post on the radiation and it brought me back to this post, as I am interested in hearing from others also. Are you having radiation on your lung then? Have you had radiation on any bone areas thus far? My personal exp. with radiation has been good. It takes the pain away, and it also attacks the tumor and cancer cells right away. Which reduces intake of pain meds. They say all of my labs are so normal it is ridiculous. I other wise feel great if it were not for pain. Today, I know I am ready to take this on!!! I wish you the best and will be watching for future posts. Sending good vibes your way and stay positive!!!! We need to be! I am 51 years old, and have alot to fight for.
Take Care,
Joanie

jejohn · April 2011

JoanieL said:
Same Situation Here
I am sorry to see that you are going through the same as I. I too, have the same Dx's was on Carboplatin, Avastin, Alimta, which was given once every 21 days. I then had a PET Scan the end of Dec. that showed spinal tumor was gone, as the one that was in the middle right lobe of my lung was gone also. The tumor in my femur had reduced some. They decided to start maint. on using Alimta/Avastin. This was done every 21 days, four times now. In Feb. I was having extreme pain start in my leg. The femur produced a second tumor and covered 2/3 or 80% of my femur. I just finished up on Monday with 10 radaition tx's. Last Sat. I woke feeing great, by afternoon I could barely move right arm and shoulder. I presented to the ER with severe pain. A chest ct with contrast was ordered. I right middle lobe pneumonia and a spasming trapezius muscle. Very painful, ER doctor knew I was having a PET Wed. morning and said we would see what that shows. Unfortunately, I have anew tumor in the right lung pushing the nerves. I have not recieved the full report on PET Scan, will get that Monday. I did see the radiation oncologist and he recommends 15-20 radation tx's to right lung. I am awaiting Mon. appointment as they will be switching chemo and he did not know if they would agree to do chemo and radiation at the same time. I just had that my last run as I did both and did fine. They say that the lung is different then the bone thought and is tougher to do both. I had been in severe pain and they have that now covered with meds. I was feeling very much down and at loss over this situation. Now that the pain is in control, I am ready to fight the fight!!! I have seen you post on the radiation and it brought me back to this post, as I am interested in hearing from others also. Are you having radiation on your lung then? Have you had radiation on any bone areas thus far? My personal exp. with radiation has been good. It takes the pain away, and it also attacks the tumor and cancer cells right away. Which reduces intake of pain meds. They say all of my labs are so normal it is ridiculous. I other wise feel great if it were not for pain. Today, I know I am ready to take this on!!! I wish you the best and will be watching for future posts. Sending good vibes your way and stay positive!!!! We need to be! I am 51 years old, and have alot to fight for.
Take Care,
Joanie

Soounds like we have a
Soounds like we have a similar sitiuation. I am sorry for your pain. So far, my arm has not hurt me too bad, even when it was broken back in September. I had 10 radiation treatments that went fine. Could not pin the break, but it healed nicely. Still bothers me occasionally, but tylenol works. My lung tumor has not been radiated. Do you know if radiation decreases the chance of the cancer spreading? It seems like it would to me, but my dr. has not prescribed it. He was if my last PET was good which it was not. I wish he would attack this tumor and kill it!! I am only 47 and have a wonderful life that I want to keep living!! Thank you for your good vibes and I send best wishes to you. I am thinking abt. calling my radiation oncologist or looking into Emory or Cancer Treatment Center of America for radiation answers and clinical trial studies. Do you think this is a good idea?

JoanieL · April 2011

jejohn said:
Soounds like we have a
Soounds like we have a similar sitiuation. I am sorry for your pain. So far, my arm has not hurt me too bad, even when it was broken back in September. I had 10 radiation treatments that went fine. Could not pin the break, but it healed nicely. Still bothers me occasionally, but tylenol works. My lung tumor has not been radiated. Do you know if radiation decreases the chance of the cancer spreading? It seems like it would to me, but my dr. has not prescribed it. He was if my last PET was good which it was not. I wish he would attack this tumor and kill it!! I am only 47 and have a wonderful life that I want to keep living!! Thank you for your good vibes and I send best wishes to you. I am thinking abt. calling my radiation oncologist or looking into Emory or Cancer Treatment Center of America for radiation answers and clinical trial studies. Do you think this is a good idea?

More Like Ditto's
Hi jejohn,
I think we have ditto's for dx's and tx's! I am glad to hear your arm has not been to painful! What a blessing, as we all could do without pain. So the radiation tx's have been to your arm? Glad that broken arm healed well for you. Radiation does control the cancer and decrease tumor for most. It has worked well with my spinal tumor and left femur! It does decrease the chance of spreading, if that is the only thing you have going on. Remember radiaton is pinpointed to one area!
I met with both the chemo onco/radiation onc yesterday for final on my PET scan. I have new mets. One is to my 9th rib and the other is to my pelvis bone, in addition I have that new tumor in my left lung. The first lung tumor was gone in Dec when they did the PET and that was from the first chemo I had. My pain is in control through medication. If not they would have used radiation for pain control and to reduce that one tumor. It is obvious with the new mets we have to get going on the new chemo to get it out there to all sights. As radiation would have only targeted the one in the lung and I would have had to do 20 radiation tx's to lung prior to getting and chemo. The team decided and I agree we do the chemo first. They are going to use Avastin, Carboplatin, and Taxol. They only one I have never had is the Taxol. They say it will be rougher then the first chemo used. I dread the thought of getting sick, but will focus on being well. I only had been sick 2 times with chemo and have had 8 so far. I learned how to stay ahead of it. I only hope to use that knowledge for this and have a good outcome. They will do the first of this chemo Thursday this week and the next will be on the 28th if I do well. Their plan is to do 2 tx's and then a PET Scan to re stage. Radiation will not be used on the lung unless the tumor increases and the pain is out of control. They say radiation on the lung tissue is much different then on the bone areas.
I hear you on having a wonderful life, mine is here too! I am 51, so not to far ahead of you. I think your doc went with the chemo for you due to the mets they found. Also the new chemo should do well with the lung tumor. They say we do not want to use radiation unless we have to. I understood that part in our meeting yesterday. My husband and I were thinking radiation, but to do that would take away 4 weeks of a start on chemo and with mets already occurring, realize they need to be under control firstly, in addition chemo alone took care of the first tumor in the lung.
jejohn, it can not hurt anything at all to make calls to Emory or the Cancer Treatment Center of America. Honestly, when you feel you should, I think you should go with your gut. You may get all the same answers, but you will have peace in what you are doing and going through. I have faith in my team of doctors here, all from the University of Minnesota, and they also have a good reputation. I am thinking of you often and including good thoughts and vibes your way. I do not like this dx's anymore then you do, we need to stay strong, take care of ourselves, stay positive, and when it get rough, get up for the next round. I have chatted with many that have had the same dx's and mets to the bone, some are now celebrating 6 years. I think we focus on the wonderful life we have and live each day to the fullest and enjoy! Peace be with you. I look forward to hearing from you, and how you are doing. Keep me posted. If you want to feel free to leave a message privately and we maybe can exchange email addresses in case we want a more private discussion, and not to post all.
Thanks,
Joanie

jejohn · April 2011

JoanieL said:
More Like Ditto's
Hi jejohn,
I think we have ditto's for dx's and tx's! I am glad to hear your arm has not been to painful! What a blessing, as we all could do without pain. So the radiation tx's have been to your arm? Glad that broken arm healed well for you. Radiation does control the cancer and decrease tumor for most. It has worked well with my spinal tumor and left femur! It does decrease the chance of spreading, if that is the only thing you have going on. Remember radiaton is pinpointed to one area!
I met with both the chemo onco/radiation onc yesterday for final on my PET scan. I have new mets. One is to my 9th rib and the other is to my pelvis bone, in addition I have that new tumor in my left lung. The first lung tumor was gone in Dec when they did the PET and that was from the first chemo I had. My pain is in control through medication. If not they would have used radiation for pain control and to reduce that one tumor. It is obvious with the new mets we have to get going on the new chemo to get it out there to all sights. As radiation would have only targeted the one in the lung and I would have had to do 20 radiation tx's to lung prior to getting and chemo. The team decided and I agree we do the chemo first. They are going to use Avastin, Carboplatin, and Taxol. They only one I have never had is the Taxol. They say it will be rougher then the first chemo used. I dread the thought of getting sick, but will focus on being well. I only had been sick 2 times with chemo and have had 8 so far. I learned how to stay ahead of it. I only hope to use that knowledge for this and have a good outcome. They will do the first of this chemo Thursday this week and the next will be on the 28th if I do well. Their plan is to do 2 tx's and then a PET Scan to re stage. Radiation will not be used on the lung unless the tumor increases and the pain is out of control. They say radiation on the lung tissue is much different then on the bone areas.
I hear you on having a wonderful life, mine is here too! I am 51, so not to far ahead of you. I think your doc went with the chemo for you due to the mets they found. Also the new chemo should do well with the lung tumor. They say we do not want to use radiation unless we have to. I understood that part in our meeting yesterday. My husband and I were thinking radiation, but to do that would take away 4 weeks of a start on chemo and with mets already occurring, realize they need to be under control firstly, in addition chemo alone took care of the first tumor in the lung.
jejohn, it can not hurt anything at all to make calls to Emory or the Cancer Treatment Center of America. Honestly, when you feel you should, I think you should go with your gut. You may get all the same answers, but you will have peace in what you are doing and going through. I have faith in my team of doctors here, all from the University of Minnesota, and they also have a good reputation. I am thinking of you often and including good thoughts and vibes your way. I do not like this dx's anymore then you do, we need to stay strong, take care of ourselves, stay positive, and when it get rough, get up for the next round. I have chatted with many that have had the same dx's and mets to the bone, some are now celebrating 6 years. I think we focus on the wonderful life we have and live each day to the fullest and enjoy! Peace be with you. I look forward to hearing from you, and how you are doing. Keep me posted. If you want to feel free to leave a message privately and we maybe can exchange email addresses in case we want a more private discussion, and not to post all.
Thanks,
Joanie

Sounds like you have alot
Sounds like you have alot going on and know alot of information as well. When do you start your new chemo? I had taxotere last Thursday which was supposed to be worse than the carbo with rash side effects. I have just been tired like I was with the carbo. I think Avastin makes me tired as well.I hope things go well for you, and I am so glad for all your wisdom and advice. You have really heard of someone living for 6 years? Even with it spreading? Lets shoot for that long,at least! My email is J92bama@charter.net. It is a beautiful day here in Alabama, and I am about to go watch a friend's daughter play tennis. Looking forward to hearing from you soon.

angelyn · April 2011

jejohn said:
Sounds like you have alot
Sounds like you have alot going on and know alot of information as well. When do you start your new chemo? I had taxotere last Thursday which was supposed to be worse than the carbo with rash side effects. I have just been tired like I was with the carbo. I think Avastin makes me tired as well.I hope things go well for you, and I am so glad for all your wisdom and advice. You have really heard of someone living for 6 years? Even with it spreading? Lets shoot for that long,at least! My email is J92bama@charter.net. It is a beautiful day here in Alabama, and I am about to go watch a friend's daughter play tennis. Looking forward to hearing from you soon.

jejohn and joanie
Hello all-
Just wondering, and I hope I didn't miss it, do you two have NSCLC or SCLC? Are both of you having recurrant tumors? My mom has recurrant SCLC and has started chemo again which is making her EXTREMELY sick. I hope this time around she can go into remission for the next 20 years!
Angie

phoobear · April 2011

angelyn said:
jejohn and joanie
Hello all-
Just wondering, and I hope I didn't miss it, do you two have NSCLC or SCLC? Are both of you having recurrant tumors? My mom has recurrant SCLC and has started chemo again which is making her EXTREMELY sick. I hope this time around she can go into remission for the next 20 years!
Angie

lung
i am new here but guess this is the place too ask this question. i went too my family dr too get some scripts refilled and he heard me wheezing, so listened too my chest. sent me immediately for a chest x ray. next day nurse called and he wanted cat sccan,breathing test echo car, bone scan , brain scan, and finally pet scan. i was called and he sent me too onco, and he said i had lung cancer along with colon cancer. they did biopsies 6 of them from my lung. i had the port put in, and yesterday i went back too onco, and he said there is a disagreeement and send tests too mayo clinic and they can not come up with a diagnosis. now he wants too send me out of town too a cancer center, and i am scared too death because this has been going on for 6 weeks. if it is cancer i am afraid they are not going too get me started on chemo in time. Has any one ever been through this? he told me yesterday he still goes with this diagnosis that it is lung cancer. by the way everything came back clean except for the lung and pulmonary was not good.i do not know what too do. i am so scared. now here i am with the port in expecting too start chemo, and this is what i was told. i hope some one on here can help me or give me some advice. god blesss each and every one of you. phoobear

jane brindle · April 2011

phoobear said:
lung
i am new here but guess this is the place too ask this question. i went too my family dr too get some scripts refilled and he heard me wheezing, so listened too my chest. sent me immediately for a chest x ray. next day nurse called and he wanted cat sccan,breathing test echo car, bone scan , brain scan, and finally pet scan. i was called and he sent me too onco, and he said i had lung cancer along with colon cancer. they did biopsies 6 of them from my lung. i had the port put in, and yesterday i went back too onco, and he said there is a disagreeement and send tests too mayo clinic and they can not come up with a diagnosis. now he wants too send me out of town too a cancer center, and i am scared too death because this has been going on for 6 weeks. if it is cancer i am afraid they are not going too get me started on chemo in time. Has any one ever been through this? he told me yesterday he still goes with this diagnosis that it is lung cancer. by the way everything came back clean except for the lung and pulmonary was not good.i do not know what too do. i am so scared. now here i am with the port in expecting too start chemo, and this is what i was told. i hope some one on here can help me or give me some advice. god blesss each and every one of you. phoobear

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

jejohn · April 2011

angelyn said:
jejohn and joanie
Hello all-
Just wondering, and I hope I didn't miss it, do you two have NSCLC or SCLC? Are both of you having recurrant tumors? My mom has recurrant SCLC and has started chemo again which is making her EXTREMELY sick. I hope this time around she can go into remission for the next 20 years!
Angie

I have NSCLC. So sorry your
I have NSCLC. So sorry your Mom is sick. What kind of chemo is she taking? I have one tumor in my lung and several"spots" on my spine. Hoping my new chemo will take them out!

jejohn · April 2011

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

Fear of the unknown is the
Fear of the unknown is the worst. I will tell you that they did not start me on chemo right away because they did a biopsy to see if I had a certatin gene mutation(I did not). My dr. said waiting a few weeks to start chemo did not make that much difference. I was still very anxious. I hope you get answers soon, phoobear. Learn all you can and gear up for the fight. I pray everyday for a cure...

JoanieL · April 2011

jejohn said:
Sounds like you have alot
Sounds like you have alot going on and know alot of information as well. When do you start your new chemo? I had taxotere last Thursday which was supposed to be worse than the carbo with rash side effects. I have just been tired like I was with the carbo. I think Avastin makes me tired as well.I hope things go well for you, and I am so glad for all your wisdom and advice. You have really heard of someone living for 6 years? Even with it spreading? Lets shoot for that long,at least! My email is J92bama@charter.net. It is a beautiful day here in Alabama, and I am about to go watch a friend's daughter play tennis. Looking forward to hearing from you soon.

Has Been Alot
Hi jejohn. sorry for the delay in getting back to you. I started the new chemo on Thursday April 7th. That is the avastin, carbopalatin and taxol. I am holding up good to it so far! Slight headache and nausea this a.m. and that has past. I have had some very good advice here on the chat line. They say to graze eat, no big meals, and water, water and more water. That seems to be the ticket there.
Yes, I have met people with the same diagnoses and same mets also here on chat. Some are 6+ year survivors, and what an inspiration they are! They have helped me in the recent month get through some rough roads. I think that staying positive is the key, and keeping faith/hope is huge! How did you do with the new chemo? I look forward to hearing how you are doing too!
Joanie

jane brindle · April 2011

jejohn said:
Fear of the unknown is the
Fear of the unknown is the worst. I will tell you that they did not start me on chemo right away because they did a biopsy to see if I had a certatin gene mutation(I did not). My dr. said waiting a few weeks to start chemo did not make that much difference. I was still very anxious. I hope you get answers soon, phoobear. Learn all you can and gear up for the fight. I pray everyday for a cure...

Fear of the Unknown
Fear of the Unknown...the worst. I'm happy to hear that you pray everyday for a cure. I was told that I won't get a cure, but my team will help me manage my cancer. OK. Let's manage AND pray for a miracle. I want to be a miracle just like all of us.

jane brindle · April 2011

JoanieL said:
More Like Ditto's
Hi jejohn,
I think we have ditto's for dx's and tx's! I am glad to hear your arm has not been to painful! What a blessing, as we all could do without pain. So the radiation tx's have been to your arm? Glad that broken arm healed well for you. Radiation does control the cancer and decrease tumor for most. It has worked well with my spinal tumor and left femur! It does decrease the chance of spreading, if that is the only thing you have going on. Remember radiaton is pinpointed to one area!
I met with both the chemo onco/radiation onc yesterday for final on my PET scan. I have new mets. One is to my 9th rib and the other is to my pelvis bone, in addition I have that new tumor in my left lung. The first lung tumor was gone in Dec when they did the PET and that was from the first chemo I had. My pain is in control through medication. If not they would have used radiation for pain control and to reduce that one tumor. It is obvious with the new mets we have to get going on the new chemo to get it out there to all sights. As radiation would have only targeted the one in the lung and I would have had to do 20 radiation tx's to lung prior to getting and chemo. The team decided and I agree we do the chemo first. They are going to use Avastin, Carboplatin, and Taxol. They only one I have never had is the Taxol. They say it will be rougher then the first chemo used. I dread the thought of getting sick, but will focus on being well. I only had been sick 2 times with chemo and have had 8 so far. I learned how to stay ahead of it. I only hope to use that knowledge for this and have a good outcome. They will do the first of this chemo Thursday this week and the next will be on the 28th if I do well. Their plan is to do 2 tx's and then a PET Scan to re stage. Radiation will not be used on the lung unless the tumor increases and the pain is out of control. They say radiation on the lung tissue is much different then on the bone areas.
I hear you on having a wonderful life, mine is here too! I am 51, so not to far ahead of you. I think your doc went with the chemo for you due to the mets they found. Also the new chemo should do well with the lung tumor. They say we do not want to use radiation unless we have to. I understood that part in our meeting yesterday. My husband and I were thinking radiation, but to do that would take away 4 weeks of a start on chemo and with mets already occurring, realize they need to be under control firstly, in addition chemo alone took care of the first tumor in the lung.
jejohn, it can not hurt anything at all to make calls to Emory or the Cancer Treatment Center of America. Honestly, when you feel you should, I think you should go with your gut. You may get all the same answers, but you will have peace in what you are doing and going through. I have faith in my team of doctors here, all from the University of Minnesota, and they also have a good reputation. I am thinking of you often and including good thoughts and vibes your way. I do not like this dx's anymore then you do, we need to stay strong, take care of ourselves, stay positive, and when it get rough, get up for the next round. I have chatted with many that have had the same dx's and mets to the bone, some are now celebrating 6 years. I think we focus on the wonderful life we have and live each day to the fullest and enjoy! Peace be with you. I look forward to hearing from you, and how you are doing. Keep me posted. If you want to feel free to leave a message privately and we maybe can exchange email addresses in case we want a more private discussion, and not to post all.
Thanks,
Joanie

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

JoanieL · April 2011

angelyn said:
jejohn and joanie
Hello all-
Just wondering, and I hope I didn't miss it, do you two have NSCLC or SCLC? Are both of you having recurrant tumors? My mom has recurrant SCLC and has started chemo again which is making her EXTREMELY sick. I hope this time around she can go into remission for the next 20 years!
Angie

Angie
Hi Angie,
I have NSCLC, with mets to the bones. I had 1 lung tumor after my dx's. With my first 4 treatments of chemo that lung tumor was gone. Yes, I have a new tumor to the right lung now. They switched my chemo up to, avastin, carboplatin and taxol. I had the first tx of this on Thursday, April 7th. I am extremely tired, but had only 1 bout feeling nauseated and the anti nausea meds handled that. I was given advice on chat to drink water, water, and more water and that seems to be the ticket. If you can get her to the point she can get something down, get the water and fluids in!!! If she has anti-nausea meds, try to get that on board first. I will have another chemo tx on the 28th of April and some time after that they will do anotherr PET Scan to see how it is working. Thus far, I have no breakthrough in pain so it must be doing something for me. The main thing Angie is her fluids first, then food, if she can get to feeling good, she will have more fight in her. Stay positive and keep faith! I am just keeping the fluids up and sleeping when I feel tired, as I think at times we push to much to stay awake and alert. I wish the best to you and your Mom, as I know this is difficult for both. I was also a caregiver to my Mom 14+ years ago. I know how hard it is to be on both sides of this fight!
Joanie

angelyn · April 2011

JoanieL said:
Angie
Hi Angie,
I have NSCLC, with mets to the bones. I had 1 lung tumor after my dx's. With my first 4 treatments of chemo that lung tumor was gone. Yes, I have a new tumor to the right lung now. They switched my chemo up to, avastin, carboplatin and taxol. I had the first tx of this on Thursday, April 7th. I am extremely tired, but had only 1 bout feeling nauseated and the anti nausea meds handled that. I was given advice on chat to drink water, water, and more water and that seems to be the ticket. If you can get her to the point she can get something down, get the water and fluids in!!! If she has anti-nausea meds, try to get that on board first. I will have another chemo tx on the 28th of April and some time after that they will do anotherr PET Scan to see how it is working. Thus far, I have no breakthrough in pain so it must be doing something for me. The main thing Angie is her fluids first, then food, if she can get to feeling good, she will have more fight in her. Stay positive and keep faith! I am just keeping the fluids up and sleeping when I feel tired, as I think at times we push to much to stay awake and alert. I wish the best to you and your Mom, as I know this is difficult for both. I was also a caregiver to my Mom 14+ years ago. I know how hard it is to be on both sides of this fight!
Joanie

Joanie
Thanks for your advice on the drinking extra water. I will definitely tell her to up the intake on the fluids. We did her second round of chemo last week and she has been very sick this week. They gave her Emend the first session last month, makes me wonder if they gave her it the 2nd go round. She is very depressed and frankly it is getting to me too. All I want to do is sleep. I appreciate you for taking time to give me positive thoughts when I know how tired you get when you are on the chemo merry go round.
Lots of love and good thoughts going your way-
Angie

when to get a 2nd opinion

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