Re: Another mountain to climb

[Guest guest]

Sue I am so sorry to hear that you have lung cancer! So, is it your decision to do nothing? I certainly understand how you could come to that decision if it is indeed yours but please realize that you are probably a bit depressed now. Do you see a counselor? I would think this to be a perfect time to see one. I know you feel 6 of 1 half a dozen of another but lung cancer is no way to die either. Talk about being caught between a rock and a hard place. I am just so sorry that you are having such things happening to you. Joyce Rudy

Hi everyone:

I haven’t posted for a while, but I read every day. I wanted to bring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. At time, he told me to have another CT scan in 3 months because it was so small. So in July, the CT scan had showed this “nodule†had grown a little. Doc told me that tumor growth in pts with ILD is not uncommon and he gradually lowered my Cellcept dose and my prednisone. I noticed more shortness of breath but he felt it was necessary because of the immunosuppressants.

I was scheduled for a PET scan a week later which showed the probability of the tumor being cancerous and some enlarged lymph nodes. Then I was scheduled for a bronchoscopy with ultrasound to take washings from the lymph node and the nodule. They came back negative for cancer. A couple of weeks later (now into Sept), I saw a thoracic cancer surgeon at Duke (D’Amico, who may be the best at what he does, but has absolutely no patient skills—but that’s another story). He told me a 90% chance the tumor was cancer, but told me I wouldn’t make it through surgery with my lung situation. Told me to go back to pulm. Rehab and lose weight (didn’t say how much). So I went to pulm rehab 4 times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. I saw him on Thursday, after having another CT scan and PFT’s. He told me he could not operate on me and if I survived the surgery, my quality of life may be even more compromised. Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about 15 min. later the radiation oncology resident came in and then the attending came in. They told me that first we had to be sure it is cancer and a needle bx would have to be scheduled (local anesthesia). That would show what kind of cancer it is. They felt it was something that could be treated in 3-4 treatments with a very high dose, very focused radiation. Two treatments one week and one the next. Since I live in VA, the Medical College of Virginia in Richmond (only about 60 miles away) has a highly rated cancer center and I could probably go there to . So I decided I will have the bx done at Duke by the same surgeon who did the bronchoscopy and depending on results I will be referred to MCV for the radiation. I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of the other and wonder how much more I can take. Maybe it’s best that the surgery option has been taken off the table for me and we go now to radiation. I doubt I will do any chemo because nothing, absolutely nothing, will change the underlying disease and we all know what the eventual outcome is. In my earlier years, I couldn’t imagine anything worse than to have lung cancer, but you know what—there is something worse so the word “cancer†doesn’t scare me nearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, ? lung ca, VA

[Guest guest]

Sue:

So sorry about the turn of events, but I certainly understand how you feel. I'll be praying for you.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Sun, November 15, 2009 10:16:53 AMSubject: Another mountain to climb

Hi everyone:

I haven’t posted for a while, but I read every day. I wanted to bring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. At time, he told me to have another CT scan in 3 months because it was so small. So in July, the CT scan had showed this “nodule†had grown a little. Doc told me that tumor growth in pts with ILD is not uncommon and he gradually lowered my Cellcept dose and my prednisone. I noticed more shortness of breath but he felt it was necessary because of the immunosuppressants.

I was scheduled for a PET scan a week later which showed the probability of the tumor being cancerous and some enlarged lymph nodes. Then I was scheduled for a bronchoscopy with ultrasound to take washings from the lymph node and the nodule. They came back negative for cancer. A couple of weeks later (now into Sept), I saw a thoracic cancer surgeon at Duke (D’Amico, who may be the best at what he does, but has absolutely no patient skills—but that’s another story). He told me a 90% chance the tumor was cancer, but told me I wouldn’t make it through surgery with my lung situation. Told me to go back to pulm. Rehab and lose weight (didn’t say how much). So I went to pulm rehab 4 times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. I saw him on Thursday, after having another CT scan and PFT’s. He told

me he could not operate on me and if I survived the surgery, my quality of life may be even more compromised. Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about 15 min. later the radiation oncology resident came in and then the attending came in. They told me that first we had to be sure it is cancer and a needle bx would have to be scheduled (local anesthesia). That would show what kind of cancer it is. They felt it was something that could be treated in 3-4 treatments with a very high dose, very focused radiation. Two treatments one week and one the next. Since I live in VA, the Medical College of Virginia in Richmond (only about 60 miles away) has a highly rated cancer center and I could probably go there to . So I decided I will have the bx done at Duke by the same surgeon who did the bronchoscopy and depending on results I will be referred to MCV for the radiation. I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of the other and wonder how much more I can take. Maybe it’s best that the surgery option has been taken off the table for me and we go now to radiation. I doubt I will do any chemo because nothing, absolutely nothing, will change the underlying disease and we all know what the eventual outcome is. In my earlier years, I couldn’t imagine anything worse than to have lung cancer, but you know what—there is something worse so the word “cancer†doesn’t scare me nearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, ? lung ca, VA

[Guest guest]

Sue,

I'm so sorry you have this added burden. Please keep us all posted. You are in my thoughts and prayers.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 15, 2009 10:16:53 AMSubject: Another mountain to climb

Hi everyone:

I haven’t posted for a while, but I read every day. I wanted to bring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. At time, he told me to have another CT scan in 3 months because it was so small. So in July, the CT scan had showed this “nodule†had grown a little. Doc told me that tumor growth in pts with ILD is not uncommon and he gradually lowered my Cellcept dose and my prednisone. I noticed more shortness of breath but he felt it was necessary because of the immunosuppressants.

I was scheduled for a PET scan a week later which showed the probability of the tumor being cancerous and some enlarged lymph nodes. Then I was scheduled for a bronchoscopy with ultrasound to take washings from the lymph node and the nodule. They came back negative for cancer. A couple of weeks later (now into Sept), I saw a thoracic cancer surgeon at Duke (D’Amico, who may be the best at what he does, but has absolutely no patient skills—but that’s another story). He told me a 90% chance the tumor was cancer, but told me I wouldn’t make it through surgery with my lung situation. Told me to go back to pulm. Rehab and lose weight (didn’t say how much). So I went to pulm rehab 4 times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. I saw him on Thursday, after having another CT scan and PFT’s. He told

me he could not operate on me and if I survived the surgery, my quality of life may be even more compromised. Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about 15 min. later the radiation oncology resident came in and then the attending came in. They told me that first we had to be sure it is cancer and a needle bx would have to be scheduled (local anesthesia). That would show what kind of cancer it is. They felt it was something that could be treated in 3-4 treatments with a very high dose, very focused radiation. Two treatments one week and one the next. Since I live in VA, the Medical College of Virginia in Richmond (only about 60 miles away) has a highly rated cancer center and I could probably go there to . So I decided I will have the bx done at Duke by the same surgeon who did the bronchoscopy and depending on results I will be referred to MCV for the radiation. I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of the other and wonder how much more I can take. Maybe it’s best that the surgery option has been taken off the table for me and we go now to radiation. I doubt I will do any chemo because nothing, absolutely nothing, will change the underlying disease and we all know what the eventual outcome is. In my earlier years, I couldn’t imagine anything worse than to have lung cancer, but you know what—there is something worse so the word “cancer†doesn’t scare me nearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, ? lung ca, VA

[Guest guest]



Sue.... OMG girl, I don't know what to say to you that could bring comfort. The way it is is the way it is. However, I know the feeling of being overwhelmed and wrung dry and thinking there is no place to turn for relief.

We don't have a choice but to keep on keepin' on and praying for

God to intervene.

You are in my prayers.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Another mountain to climb

Hi everyone:

I haven’t posted for a while, but I read every day. I wanted to bring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. At time, he told me to have another CT scan in 3 months because it was so small. So in July, the CT scan had showed this “nodule†had grown a little. Doc told me that tumor growth in pts with ILD is not uncommon and he gradually lowered my Cellcept dose and my prednisone. I noticed more shortness of breath but he felt it was necessary because of the immunosuppressants.

I was scheduled for a PET scan a week later which showed the probability of the tumor being cancerous and some enlarged lymph nodes. Then I was scheduled for a bronchoscopy with ultrasound to take washings from the lymph node and the nodule. They came back negative for cancer. A couple of weeks later (now into Sept), I saw a thoracic cancer surgeon at Duke (D’Amico, who may be the best at what he does, but has absolutely no patient skills—but that’s another story). He told me a 90% chance the tumor was cancer, but told me I wouldn’t make it through surgery with my lung situation. Told me to go back to pulm. Rehab and lose weight (didn’t say how much). So I went to pulm rehab 4 times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. I saw him on Thursday, after having another CT scan and PFT’s. He told me he could not operate on me and if I survived the surgery, my quality of life may be even more compromised. Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about 15 min. later the radiation oncology resident came in and then the attending came in. They told me that first we had to be sure it is cancer and a needle bx would have to be scheduled (local anesthesia). That would show what kind of cancer it is. They felt it was something that could be treated in 3-4 treatments with a very high dose, very focused radiation. Two treatments one week and one the next. Since I live in VA, the Medical College of Virginia in Richmond (only about 60 miles away) has a highly rated cancer center and I could probably go there to . So I decided I will have the bx done at Duke by the same surgeon who did the bronchoscopy and depending on results I will be referred to MCV for the radiation. I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of the other and wonder how much more I can take. Maybe it’s best that the surgery option has been taken off the table for me and we go now to radiation. I doubt I will do any chemo because nothing, absolutely nothing, will change the underlying disease and we all know what the eventual outcome is. In my earlier years, I couldn’t imagine anything worse than to have lung cancer, but you know what—there is something worse so the word “cancer†doesn’t scare me nearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, ? lung ca, VA

[Guest guest]

sue

so sorry to read your story -- so scary -- do they think the cellcept had something to do with the tumors?

now you have me scared

i take 2000 mgs cellcept per day

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Another mountain to climbTo: Breathe-Support Date: Sunday, November 15, 2009, 10:16 AM

Hi everyone:

I haven’t posted for a while, but I read every day. I wanted to bring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. At time, he told me to have another CT scan in 3 months because it was so small. So in July, the CT scan had showed this “nodule†had grown a little. Doc told me that tumor growth in pts with ILD is not uncommon and he gradually lowered my Cellcept dose and my prednisone. I noticed more shortness of breath but he felt it was necessary because of the immunosuppressants.

I was scheduled for a PET scan a week later which showed the probability of the tumor being cancerous and some enlarged lymph nodes. Then I was scheduled for a bronchoscopy with ultrasound to take washings from the lymph node and the nodule. They came back negative for cancer. A couple of weeks later (now into Sept), I saw a thoracic cancer surgeon at Duke (D’Amico, who may be the best at what he does, but has absolutely no patient skills—but that’s another story). He told me a 90% chance the tumor was cancer, but told me I wouldn’t make it through surgery with my lung situation. Told me to go back to pulm. Rehab and lose weight (didn’t say how much). So I went to pulm rehab 4 times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. I saw him on Thursday, after having another CT scan and PFT’s. He told

me he could not operate on me and if I survived the surgery, my quality of life may be even more compromised. Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about 15 min. later the radiation oncology resident came in and then the attending came in. They told me that first we had to be sure it is cancer and a needle bx would have to be scheduled (local anesthesia). That would show what kind of cancer it is. They felt it was something that could be treated in 3-4 treatments with a very high dose, very focused radiation. Two treatments one week and one the next. Since I live in VA, the Medical College of Virginia in Richmond (only about 60 miles away) has a highly rated cancer center and I could probably go there to . So I decided I will have the bx done at Duke by the same surgeon who did the bronchoscopy and depending on results I will be referred to MCV for the radiation. I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of the other and wonder how much more I can take. Maybe it’s best that the surgery option has been taken off the table for me and we go now to radiation. I doubt I will do any chemo because nothing, absolutely nothing, will change the underlying disease and we all know what the eventual outcome is. In my earlier years, I couldn’t imagine anything worse than to have lung cancer, but you know what—there is something worse so the word “cancer†doesn’t scare me nearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, ? lung ca, VA

__________________________________________________

[Guest guest]

Dear Sue,Just wanted you to know that I read your post. That's a lot of information to deal with. I wish you well and will say a prayer.PJ in OH, 54, IPF 09, Sjogren's 95 Another mountain to climb

Hi everyone:

I haven’t posted for a while, but I read every day. I wanted tobring you up to date on what I am dealing with now.

In April my doc at Duke (on) found a “spot†on my lung. At time, he told me to have another CT scan in 3 months because it was so small. So in July, the CT scan had showed this “nodule†had grown a little. Doc toldme that tumor growth in pts with ILD is not uncommon and he gradually loweredmy Cellcept dose and my prednisone. I noticed more shortness of breath but hefelt it was necessary because of the immunosuppressants.

I was scheduled for a PET scan a week later which showed the probabilityof the tumor being cancerous and some enlarged lymph nodes. Then I wasscheduled for a bronchoscopy with ultrasound to take washings from the lymphnode and the nodule. They came back negative for cancer. A couple of weekslater (now into Sept), I saw a thoracic cancer surgeon at Duke (D’Amico, whomay be the best at what he does, but has absolutely no patient skills—but that’sanother story). He told me a 90% chance the tumor was cancer, but told me Iwouldn’t make it through surgery with my lung situation. Told me to go back topulm. Rehab and lose weight (didn’t say how much). So I went to pulm rehab 4times a week and lost 9 lbs (still on low dose prednisone) over the next 6 wks. I saw him on Thursday, after having another CT scan and PFT’s. He told me hecould not operate on me and if I survived the surgery, my quality of life maybe even more compromised. Referred me to a radiation oncologist.

Fortunately, all these specialties are in the same clinic, and about15 min. later the radiation oncology resident came in and then the attendingcame in. They told me that first we had to be sure it is cancer and a needlebx would have to be scheduled (local anesthesia). That would show what kind ofcancer it is. They felt it was something that could be treated in 3-4 treatmentswith a very high dose, very focused radiation. Two treatments one week and onethe next. Since I live in VA, the Medical College of Virginia in Richmond (onlyabout 60 miles away) has a highly rated cancer center and I could probably gothere to . So I decided I will have the bx done at Duke by the same surgeonwho did the bronchoscopy and depending on results I will be referred to MCV forthe radiation. I am waiting now for the appt for the needle bx.

I feel like this is just one more thing to add on top of theother and wonder how much more I can take. Maybe it’s best that the surgeryoption has been taken off the table for me and we go now to radiation. I doubtI will do any chemo because nothing, absolutely nothing, will change theunderlying disease and we all know what the eventual outcome is. In myearlier years, I couldn’t imagine anything worse than to have lung cancer, butyou know what—there is something worse so the word “cancer†doesn’t scare menearly as much.

Sorry I have rambled on, but I know you guys would understand.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, ? lung ca, VA