DFK

Hi Grahame,
Same here, had labs drawn every two weeks before the infusion and met with my oncologist every other infusion or once a month.
But before I started Durvalumab (and chemo), my oncologist recommended I have a port surgically placed. I agreed as I have a very low tolerance to pain and needles. I have had no problems with my port over the course of the year. I was also provided with a numbing cream to put on my port before the infusions so I essentially did not feel the needle going in and being removed. They also drew all my labs from my port and if I needed a CAT Scan with contrast, again my port was utilized. I guess it's all a matter of preference if you want a port.  I will have my port removed if my upcoming Scans are clean.
Also, before I started Durvalumab, "someone" had to check if my insurance would cover the infusions and you should know ahead of time if there are any costs that you may incur. Durvalumab is a costly medication that even with insurance , you may or may not have a co-pay. If finances are a concern, they have staff, be it office staff or a Nurse Navigator that can provide you with organizations that may assist with costs. 
I also met with a Nurse Practitioner before I started who instructed me on what kind of drug Durvalumab is, what the goal of Durvalumab is and what side effects the doctor would be monitoring and I needed to report. 
I was never on a regular schedule for Cat Scans but because I had some problems with increasing shortness of breath and vocal chord damage, I did have a total of four Cat Scans over the course of a year. 
This is a lot to absorb in addition to your recent diagnosis as well as your recent completion of chemo and radiation. Take care of yourself first, ask questions of your healthcare team and keep a positive attitude as much as you're able. It's a tough road we're all on but doable when information and support are within reach.
Take Care, DFK
 

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

Opal-
What an awesome timely post!  This morning I woke up lethargic, feeling fat, with achey alectinib ankles.  Then I read, “motion is lotion” so here I am at the gym doing my thing.  Thanks for the little push, I needed it today!!!  Go Durva Club Go! 
Michelle

Barb and Tomm, you're almost there!  You're doing great. You got this!
Tomm, nice going on NED! 
Wanted to share, I remember I was really feeling the fatigue more and more, as I got closer to #26.  My joints were screaming a little more too, and at #22, I just wanted to stop! BUT.... Now 10 weeks post infusions I am happy to say the fatigue is just about gone and my joints feel much much better. I think part of the secret is to move more, motion is lotion. Once you get moving cause it's hard to start, it gets easier on the joints and feels better. As for fatigue, take a nap if you need to, you deserve it. For a little achy joint or muscle I take an ibuprofen and it helps. For those who gained a few, I will report I'm having to work at losing the pounds I seemed to pick up. It's my current challenge.
Wish you both and everyone else counting down on Durva the best.
Opal

#18 is done.  Just tired last night. No other side effects. Tomm glad you’re doing well. Only 6 for you and 8 for me. Have a good weekend all. 

I got #20 yesterday and was fatigue for the rest of the day, recovered today. No other side effects. My glucose is up a bit and so was my ice cream intake.
CT results yesterday... still NED

Tomm,
You are slaying it....what an inspiration. Thank you for sharing.
BTW, Mensa club member I will never be....took me a couple minutes to get your Hippie joke for Michelle....scheesh, I'm so embarrassed....good one!
Take Care, DFK

Dear dear Opal, 
What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
Take Care, DFK
 

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

Dear dear Opal, 
What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
Take Care, DFK
 

Dear dear Opal, 
What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
Take Care, DFK
 

Dear dear Opal, 
What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
Take Care, DFK
 

DFK, you must be counting the days by now. I know I did. Time seems to fly except when you want it to. Just think, 2 weeks from now at this time Durva will be behind you. Congrats on a mission well accomplished.
I vote you and Rower get together and  take your knowledge, encouragement and gift you both seem to have to help others with your words, and travel the world, or at least across the States, cheering others like us on.  
Giving thanks,
Opal

Congratulations for reaching the end of this long journey. 

Well my friend, as I read your post for some reason it conjures up an image of Wonder Woman using those magic bracelets to deflect the “evil C”.   There isn’t a light at the end of the tunnel- it’s a BONFIRE!   Your perseverance is inspirational to all the future Durva Club members.  Almost to the finish line, as we say in rowing, good racing!  
Michelle

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

Roseann,
As you navigate through your travails, know that you have a community of peeps here that will support you. As ludicrous as this may sound, your cancer sounds like the one aspect of your life under control and stable. Here's hoping the rest of your challenges will be met head on too. Great job on getting started on antidepressants. 
Hang tight, DFK

Roseann,
As you navigate through your travails, know that you have a community of peeps here that will support you. As ludicrous as this may sound, your cancer sounds like the one aspect of your life under control and stable. Here's hoping the rest of your challenges will be met head on too. Great job on getting started on antidepressants. 
Hang tight, DFK

Happy New Year to all! little late but none the less, I am still above dirt and that is a wonderful thing LOL!
I had infusion #10 on Monday no problems all is well on that front Yay me! However, my personal life is in the toilet, I would use other words but they would most likely get edited or whatever they do to people who curse! (ban me) LOL! for awhile from posting!  I filed for a divorce end of October, was final end of November. I had to do Pro Se since I could not afford an attorney, but we own no property or have anything of value so no big deal. I did have to put in the papers that I would be able to stay in our rental, rent and utility free until the lease is up in April,2020, since I am also on the lease. I am on a small SSDI, I had to withdraw my small pension, and  paid as many of my debts as I was able too, but am still left with a considerable amount of debt! My ex is now my ex, because he was never a fair person,  well, that's not the only reason, they say there are two sides to a story, well his ain't pretty 😃 anyway I believe my next step is chapter 7. What cancer patient wants to go thru this nonsense not me I tell you. But I thank the good Lord I am a strong and resilient woman. And I will somehow make it thru, maybe win the lottery LOL! I can always dream!
Barb, Your getting there! I blame EVERYTHING on Durvalumab, my Oncologist just looks at me and says I understand, but really, I do have those itchies, they drive me insane, they come and go, I have an arsenal of lotions. One will work one day another a different day, go figure. I do know a mixture of the 5 mgs prednisone and the Gabapentin has taken care of my back pain muscle pain, tingly hand and foot feeling and pain. So I am grateful 🌺
DFK, Thank you for that hauntingly lovely poem! I hope you hear from your Oncologist before that root canal, if not best of luck. I started losing teeth a few  years before my diagnosis, I mean, normally healthy teeth just falling out of my mouth, I was so malnourished, which was the only symptom my cancer presented. I had no shortness of breath, no coughing, no pain, just the weight loss, so it remained undetected for years. So I ended up with dentures which are the worst thing ever to get used to. So take good care of them there teeth madame 😃
Tomm, Glad your still boring LOL!
Oh and BTW, a new medicine added to my mix, a much needed anti-depressant I finally relented 
Take care everyone,
Roseann

Tomm,
Good to hear you're beautifully boring and that CBD and THC is helping you to the finish line. Well done.
Barb,
Yup, we know our bodies better than anyone. Getting shuffled from chemo and radiation to Durvalumab makes all of them suspect and a perfect scapegoat for all of our ills. I was told at the beginning of my treatment what was in store for me but who in their right mind can even begin to fathom the immense toll, both physically and emotionally, our diagnosis and treatments involved.
We’ve adapted well, by participating and going forward with our treatment plan. Hope remains primary and integral for a curative goal and a return (somewhat) to our lives. I love the idea that as long as we are "living" we need to live fully and gratefully. That's where my arsenal of coping and medications come in. Keeping it real and doable.
Take Care, DFK

#19 infusion yesterday, no side effects and onc asked me to stay boring.  Still taking some CBD tincture in the day and THC tincture at bedtime. 
Sorry to hear some are dealing with side effect but it sounds like we are all getting the best care with onc that know how to help.
Happy New Year Durvas!! .. the best is yet to come, it's not to soon to plan your garden

At this point I’m blaming Imfinzi for every ache, pain, itch that I have that all come and go. Sorry about your tooth, it is a pain trying to figure out what can and can’t be done while on this.