Sillycat1957

Hi Lindsay Welcome to the Durva Club!
I live in Connecticut, so far I still am getting my treatment every other week. I wouldn't want to get a double dose! How does that make you feel, getting it like that?
I hope your feeling ok with your treatments going forward. 
Take care 😃
Roseann
 

Hi all,
Just had #20 this past Monday! So far I'm handling it all ok. I say it's the low dose steroid getting me thru this. My Oncologist agrees. I still have weird aches and pains, and my Onc just shrugs her shoulders and says thyroids good, bloodworks good we will continue with your treatment yes? Well duh! Of course. Gotta love her she is a wonderful Dr, my Dr Chang.
Had a virtual or whatever you call them thar telephone face to face visits with my Pulmonologist yesterday, well that was strange if you ask me, he too is chinese, I had a difficult time understanding him, but we got through the visit ok. He said "Oh you gained weight this is good!" Yes I gained 40 lbs! I was 118 when I first saw him in May of 2019 I now am 158, I've been whining because nothing fits me from last year! Bright side I can get some new clothes, down side, I have to order online, Ugh! Oh well, this will be a trip.
Polly, so sorry to hear about all the crap you've had to go through! I hope everything works out for you, I'm sure your oncologist has something up his/her sleeve Please keep us posted
Hi Jack!
Well take care everyone, have a great night 😃
Roseann

Hi all,
Just had #20 this past Monday! So far I'm handling it all ok. I say it's the low dose steroid getting me thru this. My Oncologist agrees. I still have weird aches and pains, and my Onc just shrugs her shoulders and says thyroids good, bloodworks good we will continue with your treatment yes? Well duh! Of course. Gotta love her she is a wonderful Dr, my Dr Chang.
Had a virtual or whatever you call them thar telephone face to face visits with my Pulmonologist yesterday, well that was strange if you ask me, he too is chinese, I had a difficult time understanding him, but we got through the visit ok. He said "Oh you gained weight this is good!" Yes I gained 40 lbs! I was 118 when I first saw him in May of 2019 I now am 158, I've been whining because nothing fits me from last year! Bright side I can get some new clothes, down side, I have to order online, Ugh! Oh well, this will be a trip.
Polly, so sorry to hear about all the crap you've had to go through! I hope everything works out for you, I'm sure your oncologist has something up his/her sleeve Please keep us posted
Hi Jack!
Well take care everyone, have a great night 😃
Roseann

Hi Michelle, nice dress! Thanks. I'm more of a dress type of a gal anyway, much more forgiving what with the fluctuating hips and what not LOL! Looks very comfy and the price is something I can afford too! Do you know if the curcumin will mess around with my gallstone? I was taking Fish oil for a long time, but I stopped, can't remember why hmmm. I will have to ask about these combos, so far my weight has pretty much stabilized, I go between 154 up to 158.9, they tell me it's hormones! Haha! I'm 62 yrs old what hormones I say. Anyway, I have to go have a look see on Amazon and order 1 or 2 of those dresses they look so comfy.
Thank you again Michelle, I Hope all is well with you❤️
Lindsay,
Glad to hear things are A-Ok so far, we are here for you, if you have any questions or concerns, remember no question is ever a stupid question, one or all of us have probably experienced the same thing at one time or another 😃
Take care
Roseann
 

Hi Michelle, nice dress! Thanks. I'm more of a dress type of a gal anyway, much more forgiving what with the fluctuating hips and what not LOL! Looks very comfy and the price is something I can afford too! Do you know if the curcumin will mess around with my gallstone? I was taking Fish oil for a long time, but I stopped, can't remember why hmmm. I will have to ask about these combos, so far my weight has pretty much stabilized, I go between 154 up to 158.9, they tell me it's hormones! Haha! I'm 62 yrs old what hormones I say. Anyway, I have to go have a look see on Amazon and order 1 or 2 of those dresses they look so comfy.
Thank you again Michelle, I Hope all is well with you❤️
Lindsay,
Glad to hear things are A-Ok so far, we are here for you, if you have any questions or concerns, remember no question is ever a stupid question, one or all of us have probably experienced the same thing at one time or another 😃
Take care
Roseann
 

Hi all,
Just a little update. As I was approaching # 5 I was experiencing some chest pains and shortness of breath so my CT scan that was scheduled for 5/28 got bumped to the 5/5 and treatment was to be deferred. 
Worst scan ever.. nurse did something wrong and I ended up with a very painful extravasation. Nurse missed the vein putting the needle in.  
Results from the scan indicated a plureral effusion or suspected pneumatitis from radiation. I was placed on high dose of prednisone, currently tappering down. 

Oh and somehow during this time I managed to be exposed to covid and tested positive for the antibodies. 
 
I had a follow up today with the thoracic oncologist and was informed that I will no longer be doing immunotherapy. I’m having a very mixed reaction to this. My tumor has shrank from its original 4.3 cm x 2.9 cm to 2.0 x 1.9. One node has remained the same. And one node has slightly decreased since November 2019. I am super grateful for the treatments but what happens if I start to go backwards. 
I’m not sure what the next steps are... 
 
Polly

Hi Lisa66,
Welcome to our club! I've been a luker for some time, I just had #18 I'm feeling a little blah, but somewhat optimistic! I had my 9 months CT Scan and my tumor is now down to a mere 8mm.
So yay me! Everytime I think no way I hate this treatment, it's not working why am I torturing myself! I get good news. Then I change my attitude. So just know that we here have been thru things that you will probably experience, so be sure to check in. I wish you well on your journey!
Take care, have a great weekend, stay safe 😃
I don't know any cool jokes like Tomm
"keep your face to the sunshine and you cannot see a shadow"
Namaste, Roseann

Hi Lisa66,
Welcome to our club! I've been a luker for some time, I just had #18 I'm feeling a little blah, but somewhat optimistic! I had my 9 months CT Scan and my tumor is now down to a mere 8mm.
So yay me! Everytime I think no way I hate this treatment, it's not working why am I torturing myself! I get good news. Then I change my attitude. So just know that we here have been thru things that you will probably experience, so be sure to check in. I wish you well on your journey!
Take care, have a great weekend, stay safe 😃
I don't know any cool jokes like Tomm
"keep your face to the sunshine and you cannot see a shadow"
Namaste, Roseann

Hi Lisa66,
Welcome to our club! I've been a luker for some time, I just had #18 I'm feeling a little blah, but somewhat optimistic! I had my 9 months CT Scan and my tumor is now down to a mere 8mm.
So yay me! Everytime I think no way I hate this treatment, it's not working why am I torturing myself! I get good news. Then I change my attitude. So just know that we here have been thru things that you will probably experience, so be sure to check in. I wish you well on your journey!
Take care, have a great weekend, stay safe 😃
I don't know any cool jokes like Tomm
"keep your face to the sunshine and you cannot see a shadow"
Namaste, Roseann

Well it’s finally here. I’m so excited for #26 tomorrow. I’m hoping that in a few weeks/months I will feel almost normal with no chemical induced side effects?  Ready for a much needed break. I only wish I could take a vacation. 

Hey Ron- 
You’re down but definitely not out!  We have ALK which is so rare the docs don’t see a lot of us which makes it an outlier they really don’t know what to do with us.   Sorry for all those extra diagnostics and it does sound like the targeted therapy is doing the job.   @Tom Galli got it right.  You gotta stay the course!   Hang in there buddy.  We’re all pulling for you! 
Michelle

Barb, way to go! One and done!! 
I know exactly how you're feeling about getting done. It is strange after so many appointments, treatments and scans...always something to keep it in check and now only scans every 3 months. Can be a little scary. It seems to always be in the back of my mind until I forget about it. Then I try to be normal, the old me again.  I try and remind myself anxiety is not good for the immune system. It CAN make you sick.
I don't agree with you on the rear ugly head part. That's not a given. Yes, we hear about reoccurrence but I also heard of survivors who had only one go round and are living long lives. I prefer to keep that in mind. 
So for now Jersey Girl, let it go and enjoy your new found freedom. 
Opal

Hello all. 25 down, 1 to go. Blood work good. No strange side effects. I’m starting to get very anxious about what happens after. Just scans until it decides to rear it’s ugly head?  I’m not sure what to expect. Anybody have any thoughts?

Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well
Take care Roseann

Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well
Take care Roseann

Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well
Take care Roseann

Hi there Polly
I just happened to re-read your post about taking the Prednisone. Was that your sisters? I'm glad it helped, but be careful because from what I understand and what my Oncologist told me I can only take up to 10 mgs of the stuff while on Durvalumab, otherwise I have to stop treatment then resume it when I am better from whatever has ailed me causing me to take a higher dose in the first place.
Just be careful and be safe. Durvalumab is the DEVIL at times but will definitely make us better in the long run 😃

#25 done with good blood work and some fatigue
When I got to the cancer clinic I was check out before I could get in the building. There are no guests allowed. Something new, everyone was wearing a mask, no smiles from my nurses, no newspaper or mags. Doc said he is not sure I can get #26 if someone in the clinic tests positive for Corvid 19.  All CT's are on hold so no final result (was ned last check). The clinic has 8 pods with 8 chairs each and now there are just 3 chairs in a pod to keep us away from the other patients.
I found out last week that many of the groceries in town allow online orders and pay with delivery or pick at the store, they bring to your car. 
good luck to my fellow Durvies..
Joke #1    I know a great joke about Corona Virus, you probably won't get it though.
Bonus joke...  Day 3 without sports. Found a lady sitting on my couch yesterday. Apparently she is my wife. She seems nice.
, 

#23 is in the bag. Blood work good. CT says grossly unchanged. Said something about a 3mm nodule in lower right but I think it may have been on a previous scan months ago. I’m not worried because we all know Imfinzi can cause weird stuff. Oncologist’s office was strange-very few patients and very spread out. Hope all are well during this weirdness. Not only do we have to stay home, the pollen count is so high the cars are green don’t wanna go outside. Enjoy the weekend all. 

Thanks for you input Ron H and DFK, my Oncologist ran the T3 and T4 tests and they both came back within normal range. Yay! I checked the labs myself. I will put in a call to my Primary Dr to make sure I don't need to start any meds, I've had Thyroid issues a few times in the past. Heaven knows I don't want to take another dang pill but we do what we gotta do right LOL!
Dang Ron, don't you just love these idiots! I'm happy to hear you are going to get your meds, too bad you had to put up a fuss and have a hissy fit and all that!
Wishing everyone well!
Roseann

Thanks for you input Ron H and DFK, my Oncologist ran the T3 and T4 tests and they both came back within normal range. Yay! I checked the labs myself. I will put in a call to my Primary Dr to make sure I don't need to start any meds, I've had Thyroid issues a few times in the past. Heaven knows I don't want to take another dang pill but we do what we gotta do right LOL!
Dang Ron, don't you just love these idiots! I'm happy to hear you are going to get your meds, too bad you had to put up a fuss and have a hissy fit and all that!
Wishing everyone well!
Roseann

Roseann,
Keep after them on the TSH (and the T3 & T4) tests. After 5 months of complaining about shortness of breath and fatigue while on Durva, my ONC finally tested my T4 and TSH. My T4 was down to 3.4 (normal range 4.9 - 12.9) and my TSH was up to 44.03 (normal range 0.178 to 4.53). Needless to say I was not a happy camper for not being tested sooner. The ONC has been slowly (and I do mean slowly) increasing my thyroid meds starting at 50mcg per day and working its way up over the past 10 months to 150 mcg. Just had another TSH test two weeks ago and my TSH was still at 18.6 although the ONC says my T4 was about normal (not 100% sure that I believe him as I do not see any T4 test results in the lab report, but the free thyroxine index was about normal). He however did bump up my Tirosint dose to 175mcg per day. Of course I had just received a 3 month supply of the 150mcg capsules, so we agreed to just be prescribed 90 days of 25mcg capsules to supplement the 150's figuring that was the economical thing to do. Of course that confused the hell out of ExpressScripts who promptly put a hold on the prescription and didn't bother to contact anyone. Online it said that they were processing the prescription and to check back in 24 hours. I checked daily for 1 week only to find out that was BS, it was really on hold as I found out this week. I feel a little sorry for the customer service rep and their pharmacist that I finally spoke with after being on hold for 45 minutes and explaining the situation 3 times before they comprehended that 150 + 25 = 175, and that I was saving them money. Then being told that I could go get it filled quicker at the local pharmacy was the final straw. My response was "so ExpressScripts is officially recommending that an insured customer with advanced lung cancer who is already respiratory compromised go stand in line at a crowded retail pharmacy in a state with stay at home orders in the mist of the COVID-19 pandemic?" Needless to say, my prescription is being express delivered to me tomorrow.
There are some very fine medical professionals out there, but you have to advocate for yourself and keep an eye on what is happening.
-Ron

Hey Roseann,
Good to hear from you and awesome that you're done with #15 and tolerating it...WoooooHoooo. That is grand. Your T3 and T4 levels will let your doctor know if your slightly elevated TSH will warrant concern and meds. Let's hope not and it's a fluke. My liver tests skyrocketed for a month and my doctor told me to lay off the booze. Like what? I rarely drink and certainly not with all these drugs coursing thru my body. Then the next month, I was all normal again. Let's hope yours is a fluke too. If not, at least it was caught early and there are meds to address it.
Take care, good to hear from you, DFK

Good Tuesday to All,
Been thinking about our Durvies here still on their year long protocol, knowing that you are experiencing the challenges of COVID-19 and all subsequent events. In addition to our cancer you/I/we are now juggling doctor appointments and scheduling nightmares for procedures. I just had all my MD follow-up appointments cancelled thru the end of April as well as my 3 month CatScan, and my 6 week port flush that I extended by two weeks, is now on hold till mid May.....and I'm totally okay with all of that. But I'm not okay with any cancer patient having to defer on their treatments. So far I have not heard of any cancer treatments(Chemo/Immunotherapy/Radiation) being postponed. I have heard that some clinical trials have been stopped in lieu of prioritizing utilization of medical staffing and supplies. 
This too will pass but who needs the added emotional and mental stress of thinking any deferment of treatments may be adding the proverbial "another nail to the coffin". I have always said the mind is a horrible victor.....but as long as we know this, our strength and fortitude and hope trumps the alley ways of our mind that will stray to that dark place.
Barb-I think it does get better in time waiting for these test results. At some point, the "what if's leave us" and our worries are mostly about adjusting to our future should we have to take that route. Our knowledge base has made us just a tad more resilient. I'm impressed with your back to work year anniversary. I was retired when my sh*t hit the fan so I was able to wallow 24/7 in my cancer and focus, focus, focus. I'm in admiration of you. Good luck on #23. So close....I'm cheering you on.
Babs-Congrats on finishing #10. The white coat Hypertension is now replaced by the COVID-19 Hypertension? Totally understandable. For what it's worth, my Oncologist, knowing that I was tolerating my Durvalumab treatments, did tell me I could defer on one treatment if I wanted to extend my vacation with my son. He told me that Durvalumab would take 16 weeks to reach a therapeutic level and that it's half life was 17 days and if I missed one treatment, it would not effect efficacy. I did not take him up on it since my pneumonitis made that decision for me. I missed one treatment midway of the 26 doses and it did not seem to matter as the end result was NED. Carry on.
Grahame-Let us know the results of your discussion with your MD on both continuing Durvalumab and Prednisone usage. I know some have been receiving their Durvalumab with 5mg Prednisone daily to squash those side effects that went from annoying to intolerable. The 5mg seems to have made the difference in continuing rather than discontinuing.
So now that my thoughts have been transferred from my NSCLC to Toilet Paper inventory, I wish you all a very pleasant day.
Phew, I'm so relieved:
 

Thanks for you input Ron H and DFK, my Oncologist ran the T3 and T4 tests and they both came back within normal range. Yay! I checked the labs myself. I will put in a call to my Primary Dr to make sure I don't need to start any meds, I've had Thyroid issues a few times in the past. Heaven knows I don't want to take another dang pill but we do what we gotta do right LOL!
Dang Ron, don't you just love these idiots! I'm happy to hear you are going to get your meds, too bad you had to put up a fuss and have a hissy fit and all that!
Wishing everyone well!
Roseann