DFK

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi Polly, something that I learned along the way, check what your PDL1 is, mine was negative,  also make sure that auto immune disease does not run in family history. I had a very bad experience with durva, and right from the start had very very bad side effects, also with breathing. I do pray that the Dr that is treating you is on top and has your complete recovery in mind, unfortunately I didn't have that experience and now suffer from the after effects, I am not trying to scare you, however you need to be your own advocate, I certainly wish you every success and hoping that you are breathing a little better now! You have had success with chemo radiation and that is TERRIFIC! All I know is that Durva is not suited for everyone. Also check to see if you have bio markers. You have to be aware of all that is available to you. Prayers are coming to you now from me! Kate

Hi, DFK,
Your posts are so informative, I really learn a lot. You followed up asking about my husband's chest skin sensitivity; he said it's about the same but he  has found the Excedrin ES seems to take care of it and rates the pain as a "2", so the doctor has not recommended anything further. However, I am looking into a topical "recipe" to try which he says is OK. I have been the record keeper and researcher since we started this journey. He is the exact opposite, oh well.
I read some of your comments from the post on Weds. about not disclosing your diagnosis to anyone except your husband and 2 sons. My husband basically felt the same (he did tell a best friend couple we've known for about 30 years). This was his decision to keep it private and I agreed. However, last year my younger sister and her adopted teenage autistic son were planning a visit (from Ariz. to Wa. State) at about the same time he would be  having the radiation/chemo 5 days a week for 6 weeks. I felt we had to inform her as we could not manage a visit and continue with travel to clinic for 6 weeks (200 miles round trip to clinic in summer heat, etc.).  He said OK, so I did inform her and another sister I'm also in touch with in Calif. with the understanding this is to remain private and should not be shared with anyone in family or anyone else for that matter and that was my husband's desire and choice. My sister in Az is not religious and neither are we although we do believe in God. She is a very spiritual person and posts lots of "uplifting" stuff on FB - some I agree with, some I don't but usually do not comment. I feel she also posts stuff that I feel is hypocritical since she does not practice it - again, I do not relay that at all although I may vent to my husband, lol. After she learned his diagnosis, she started sending emails and/or postings on FB about "end of life" choices, spiritual blessings, etc. It became too much for us very quickly, and I sent some very strong emails telling her in all caps to STOP this stuff right now - not helpful, was intrusive, and we don't want it. I respect her beliefs even if I'm convinced they would not be my choice. She finally got the message and stopped it (that was approx. June last year).
Then over the past 3-4 months, she has posted 3 articles, etc. on my husband's FB page - I do not have a FB page but can access his plus Messenger, and don't usually look at it regularly. However, he informs me "well, she's done it again."  First he said she posted an article about "Surviving Cancer" and stated, "Foster, you should read this."  He responded to her privately via Messenger (assume it was "stop, this is private, etc.).  Then a month or two later, she posts an article about "Chemobrain" and says "Did you have this?" My response was, OMG, what is wrong with that woman?  Again, he responded via Messenger. Personally, I had never heard of Chemobrain and his doctor, nurse, etc. had never mentioned it nor was it in anything I read about his treatment. I researched it and found it was primarily a possible side effect of breast cancer patients.  The 3rd posting was recently and was about Alex Trebek of Jeopardy TV program announcing he had to have a 2nd round of treatment for pancreatic cancer (we saw his 1st announcement in March last year) - she implied since Trebek was open about diagnosis, why couldn't he do the same? This was when I said "Enough is enough"; this is not an email matter and I phoned her. Basically, I said "You don't have the right to break Foster's privacy and my confidence. I regret sharing this and I will never share anything with you again. I have to limit our communications for a while." She apologized, etc. She is not stupid and I still can't understand why she would do such a thing; she did deny posting the last item about Trebek in a public way on FB - however, Foster said it did appear on his FB page for anyone to see.
It's late at night which is when I think more rationally - please forgive this long diatribe - just had to vent I guess.
Always enjoy the jokes here, wish I had a clever one to add ......
Have some more progress to report and some questions but will do that another night, this is long enough.
Thanks again to everyone who shares their experience and cares ...
Best Wishes to all,
Georgia

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Hi Polly it's good hear your on your way with Durva and your killing your cancer. I look at side effects as part of the battle going on in your cells with the Chemo and radiation still in the fight and now getting help from Durva. It's OK for you to call your Doc anytime you have a worry and he-she may have some help for you & or ask here and someone may have an answer.
keep us posted and drink lots of water
"I have a lot of growing up to do. I realized that the other day inside my fort."

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know.
Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain  hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus".
Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. 
By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know.
Take Care, Blessing, DFK
 

Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know.
Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain  hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus".
Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. 
By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know.
Take Care, Blessing, DFK
 

Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know.
Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain  hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus".
Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. 
By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know.
Take Care, Blessing, DFK
 

Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know.
Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain  hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus".
Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. 
By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know.
Take Care, Blessing, DFK
 

Hi everyone! Been a while wanted to let you know Monday I get a PET SCAN and follow up with Onco  on March 11th, scary times for me, needless to say. The Durvalumab didn't work for me, as I said I got Hashimoto thyroditidis  heart problems, skin basel cell cancer, my spine is degenerated, had pnemonuitis so basically my health is not all that. It truly sucks, because my former Doc wouldn't listen to me when I said what was happening. I wish I had happier news, but I am very happy that some of you guys it is working for! I could certainly use some encouragement now, I did sign up for respiratory therapy, so that is covered by insurance. I am going to wait and see how this test goes on Monday! Keep on keeping on, like I do against the odds, hey all things are possible with God!

Request a biomarker test.  It can be done with a blood draw.  Depending on the results you may match with one of the targeted therapy drugs like Tagrisso.  Durva didn’t work for me.  I was biomarker tested and prescribed Tagrisso.  I have been on Tagrisso for ~18months now with no progression.  
 
Never forget the power of prayer! 🙏🏻
 
🦅

Eagle 13  ....   good to hear you have no progression.. OK more than good ... That's Great!!
Kate 7617     I hope you get good news on your Petscan.  I second Eagle13.. Request a biomarker test, they may have something like he has for you. Please check in and let us know results..
Grahm  Great news on your reduction and a good start on Durva
Carry on Cancer warriors as we fight the good fight..
I don't suffer from insanity. I enjoy every minute of it

Grahame,
You are doing wonderfully and I am thrilled your scan showed a significant decrease in size.
Off the top of my head I can't remember my tumor size but it was significant, something like 5cm x 7cm and my first scan showed a 30% reduction and that trend continued until it was no longer visible on my CatScans......I can only see the same happening to you.  
A large area with margins in my lungs to radiate which is why my respiratory status is the most compromised. I always said my docs were looking for catastrophe's while I was more interested in little nuances that were particular to me. As soon as my heart responded with tachycardia with minimal exertion I requested a Cardiology consult and a repeat Pulmunary Function Test. Not unusual to have cardiac involvement after radiation, especially where my tumor resided. And I wanted to compare my lungs to my baseline PFT taken at diagnosis. Fortunately my heart is in great shape and can handle the assault that my lungs went thru. My PFT revealed some significant functional changes and a CatScan revealed Grade III pneumonitis. Because it was caught early, my pneumonitis resolved easily enough and I was able to continue with my Durvalumab. My PFT also improved to near normal.
I'm sure you're empowered to intervene if you feel the need to do so to ensure your best possible outcome. Another great tool was my phone camera. I remember once when I told my doctor I experienced petechiae on my lower extremities. He said that it wasn't possible. I then whipped out my phone and showed him some pics....he laughed and said, Oh yeah, that's petechiae. I think that was a turning point for him and me.....he started to really listen when I had something to report. And I was reassured that he was truly listening to my "nuances". 
I feel so very blessed to have survived treatment essentially unscathed. I wish the same for you.
Take Care, Blessings, DFK
 
 

Grahame,
You are doing wonderfully and I am thrilled your scan showed a significant decrease in size.
Off the top of my head I can't remember my tumor size but it was significant, something like 5cm x 7cm and my first scan showed a 30% reduction and that trend continued until it was no longer visible on my CatScans......I can only see the same happening to you.  
A large area with margins in my lungs to radiate which is why my respiratory status is the most compromised. I always said my docs were looking for catastrophe's while I was more interested in little nuances that were particular to me. As soon as my heart responded with tachycardia with minimal exertion I requested a Cardiology consult and a repeat Pulmunary Function Test. Not unusual to have cardiac involvement after radiation, especially where my tumor resided. And I wanted to compare my lungs to my baseline PFT taken at diagnosis. Fortunately my heart is in great shape and can handle the assault that my lungs went thru. My PFT revealed some significant functional changes and a CatScan revealed Grade III pneumonitis. Because it was caught early, my pneumonitis resolved easily enough and I was able to continue with my Durvalumab. My PFT also improved to near normal.
I'm sure you're empowered to intervene if you feel the need to do so to ensure your best possible outcome. Another great tool was my phone camera. I remember once when I told my doctor I experienced petechiae on my lower extremities. He said that it wasn't possible. I then whipped out my phone and showed him some pics....he laughed and said, Oh yeah, that's petechiae. I think that was a turning point for him and me.....he started to really listen when I had something to report. And I was reassured that he was truly listening to my "nuances". 
I feel so very blessed to have survived treatment essentially unscathed. I wish the same for you.
Take Care, Blessings, DFK
 
 

Barb and Tomm- Great on continued uneventful infusions.....so close to the finish line.
Life after Durvalumab-My observations after 6 weeks
1) Significant lessening of joint aches and pain. Chest muscle pain non existent. Was taking Motrin 800mg alternating with ES Tylenol daily for comfort, have not taken any analgesics in weeks. This is huge!
2) Weight stable and unchanged whereas during infusions I gained a pound every two weeks.

3) I'm not a bundle of energy but I can meet my daily responsibilities without crippling shortness of breath or fatigue and needing rest breaks. Not having to plan and be absent for every two week infusions is pretty sweet. I am enjoying my respite.
4) My heart continues to go from 75 beats per minute to 120 taking our stairs.....just 13 of them. I suppose to meet my respiratory needs, it is what it is. Saturation steady at 98-99%. After my 8 mile bike ride, I'm taching away in the 140’s, with my Saturation at 96%.....still within my target parameters. This has not changed at all since completing Durvalumab.
Take Care, Blessings, DFK

Grahame,
You are doing wonderfully and I am thrilled your scan showed a significant decrease in size.
Off the top of my head I can't remember my tumor size but it was significant, something like 5cm x 7cm and my first scan showed a 30% reduction and that trend continued until it was no longer visible on my CatScans......I can only see the same happening to you.  
A large area with margins in my lungs to radiate which is why my respiratory status is the most compromised. I always said my docs were looking for catastrophe's while I was more interested in little nuances that were particular to me. As soon as my heart responded with tachycardia with minimal exertion I requested a Cardiology consult and a repeat Pulmunary Function Test. Not unusual to have cardiac involvement after radiation, especially where my tumor resided. And I wanted to compare my lungs to my baseline PFT taken at diagnosis. Fortunately my heart is in great shape and can handle the assault that my lungs went thru. My PFT revealed some significant functional changes and a CatScan revealed Grade III pneumonitis. Because it was caught early, my pneumonitis resolved easily enough and I was able to continue with my Durvalumab. My PFT also improved to near normal.
I'm sure you're empowered to intervene if you feel the need to do so to ensure your best possible outcome. Another great tool was my phone camera. I remember once when I told my doctor I experienced petechiae on my lower extremities. He said that it wasn't possible. I then whipped out my phone and showed him some pics....he laughed and said, Oh yeah, that's petechiae. I think that was a turning point for him and me.....he started to really listen when I had something to report. And I was reassured that he was truly listening to my "nuances". 
I feel so very blessed to have survived treatment essentially unscathed. I wish the same for you.
Take Care, Blessings, DFK
 
 

Hi DFK
 
thanks for always posting such positive thoughts and giving such hope 
 
grahame

Hi all. #21 done Thursday. Blood work ok. Just a little tired so made myself be lazy all weekend. Don’t know what it’s going to be like mentally after this is done. 

Hi Grahame here 
#2 done and dusted on Friday. Bloods all at normal parameters . Scan prior to commencement  of #1 infusion showed 2 mm reduction in Lung primary and 5 mm reduction in R4 contra lateral node as result of radiation and chemo. No new disease. Next scan 3 months. So far”touch wood” minor side effect of mild dry cough , midday fatigue and minor aches and pains . Hope that side effect profile remains minimal. 
 
great support on this forum. Thanks