Opal

Note to Lindsay, and then PShsy...
Warning, this is long, sorry.
Lindsay I finished #26 infusion about 6 months ago. Here's my side effects story..  Keeping in mind I did NOT get double dose once a month. At my #2 infusion I also received a flu shot. About 2 weeks after that infusion I started to develop a rash. A minor side affect not too prevalent or talked about. My rash didn't itch, it was just red blotches which started on face and disappeared then showed up on my neck and chin, and disappeared did this small sections until it hit my ankles. Not pretty but not painful. Derma gave me every cream and ointment but nothing helped it. A couple Durvies sent me a link that apparently those administering never realized that one should not get Durva AND a flu shot same day or I was just sensitive. 
So along with this (Polly pleez note) an early scan showed slight pneumonitis. Thus Durva was held and I was on 70mg Prednisone and tapered down over I think the next 6 weeks. Steroids were awful. I cried, got cranky and wanted to eat but tried not to. Rash disappeared and so did pneumonitis. Back on Durva. Polly why are they taking you off? My main complaint, I could only sleep it seemed in 3 hour increments for the duration. Fatigue was terrible. I too gained the 30 pounds without really eating more, probably less then normal. It was all in my mid section. I continued on exhausted but managed. Scans showed shrinkage and good stuff. I didn't have PDL or a mutation. Testing showed no active "C".
At 20 weeks I was noticing knee and joint pain which continued and lessened just recently. I get stiff now in joints at one position for long periods but chalk it up to a few years older. Not complaining.
Last week I had my 3 month scans and all is well. Stable and labs great. My Onc seems to think I may be stretching scans to 6 month intervals after September's. I like that but then I don't.   I managed 26 infusions and a separate lab poke for each visit without a port and no problem. I attribute that to some very good nurses. 
Well thru all this, I wondered if I'd get a head/brain scan ever again. I was told no symptoms, Stage 3 no scans needed. I still worried.
Yesterday afternoon while sharing care giving for my Mom, I jumped up from a cat nap and tried to make a quick dash to my Mom except that my face had a quick meeting with the kitchen floor. I ended up in ER (oh I didn't want to go!) with 6 stitches, a broken tooth and a sprained pinky finger. Two inches I would have hit the soft carpet.  There is a silver lining in this. Stitches in the eyebrow and all.....ER had to do a head scan.  All is good. Clean and clear.
I wish all you Durvies and caregivers courage, strength, faith and hope to keep going. Miracles do happen.
Hugs to all,
Opal
 

Sillycat, you are in the home stretch now. Almost done. A piece of cake.   Happy for you!
Opal

Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. 
Opal

Yep.  My family is over the river in NNJ, someone set the 9-11 Memorial on fire yesterday putting the entire neighborhood at risk.  Homeowners jumped in dig firebreaks until  the FD arrived.  Total madness in the burbs too!
 
Be sure to ask about the biomarker results. It could help determine what the next course of treatment will be.   

Hi Rosann,
So glad to hear that you’re doing well!  Sorry about the weight gain, we all get that, happy doctors who obviously can’t appreciate our wardrobe crisis!   Aches and pains seem to come with the territory, totally sucks.  You might want to ask about some anti inflammatory supplements such as fish oil-curcumin combo or the bromelian qlucosamine chondroitin cocktail.  
 
This super cute t-shirt dress arrived today- check it out:
https://www.amazon.com/dp/B071H6MTLS/ref=cm_sw_r_em_api_i_L2X0Eb5G4E1WR
Its very flattering & true to size.  Happy shopping! 
Michelle 
 

I am so happy I found this group, thank you all for the support and responses to my concerns. 

I look forward to continuing reading all of your experiences and sharing mine along the way. It’s nice to have the support of those going through or who have gone through the same thing. 
 
treatment number 4 will be in a couple weeks for me. Fingers crossed the blood work is good and we can keep going! 

Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. 
Opal

Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. 
Opal

Barb, soon as I can take the beach chair, I'll head to the Jersey Shore and chill out there  foe ya' and send you the vibes. Several are open for exercise, but I'm more laid back type😁😁
Opal

No beaches here in KS but we WILL head out to one of the “lakes” and camp out in some lawn chairs to celebrate Barb’s crossing of the Durva finish line!  Carry on Barb! 

Barb, soon as I can take the beach chair, I'll head to the Jersey Shore and chill out there  foe ya' and send you the vibes. Several are open for exercise, but I'm more laid back type😁😁
Opal

Thanks Opal. I’m hoping I can get a hotel on the GA beach sometimes soon. I’ll bring my masks and clean the room if I have to. 

Barb, CONGRATS and welcome to Done With Durva club.  Go take that vacation, even if only in your mind. 
Ron, sounds good. An optimistic ONC can make all the difference. Maybe a blessing your first doc sent your for that second opinion. Hang in and stay positive.
Opal

Barb, CONGRATS and welcome to Done With Durva club.  Go take that vacation, even if only in your mind. 
Ron, sounds good. An optimistic ONC can make all the difference. Maybe a blessing your first doc sent your for that second opinion. Hang in and stay positive.
Opal

Barb, CONGRATS and welcome to Done With Durva club.  Go take that vacation, even if only in your mind. 
Ron, sounds good. An optimistic ONC can make all the difference. Maybe a blessing your first doc sent your for that second opinion. Hang in and stay positive.
Opal

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

First of all I would like to sincerely thank everyone who messaged me regarding my last post.
Secondly I would like to apologize for not responding back sooner, however between the March CT Scan results that my ONC implied showed probable reoccurrence in my right lobe and likely progression to additional lymph nodes, and then being told that in his opinion that I should seek a second opinion consult elsewhere on possible treatments going forward, including clinical trials, sent me to a very dark place in my mind. It was somewhere that I have rarely ever visited. As a result, I just needed some serious alone time to get my head screwed back on straight. Suggestions and words of encouragement were deeply appreciated, but I needed to work through it all in my mind.
Since then, I have met with the second opinion ONC who had me have a new PET Scan, followed by a Bronchoscopic EBUS fine needle aspiration of both the primary tumor location and several of the lymph nodes. Of course in the middle of this, the hospital initiated a policy that anyone having a pulmonary procedure done must have a COVID-19 test first and it be negative. I never realized just how far back someone could actually insert a swab into your nose. It felt like it was coming out the back of my head and actually made my eyes water! I can guarantee that I've never my finger or anything else that deep in there.😆
The PET scan results were pretty unremarkable. IMPRESSION: 1. The previously noted nodular opacity in the right upper lobe has decreased in size and FDG activity with current metabolic activity slightly above the blood pool. Since the prior PET/CT scan, there has been interval increase in size of right suprahilar consolidative opacities with mild associated FDG uptake. This is favored to represent post treatment/post radiation changes although evaluation of underlying malignancy is limited. Continued attention on follow-up imaging is recommended. 2. No definite evidence of FDG avid distant metastatic disease.
The Pulmonologist debated whether to perform the EBUS with sample being taken from both the primary tumor and the lymph nodes identified however the second opinion ONC wanted tissue samples to send off to CARIS for more in-depth biomarker testing.
The biopsy remarks from the Pulmonologist Report states: "Lymph node and right lung biopsy are both negative for cancer - this is good news. I think we can continue current therapy and monitor. This suggests this is mostly scar tissue, not progressive cancer." 
I have a videochat meeting with the new ONC this Friday to see what she thinks. My normal ONC is conservative and says that the EBUS aspiration may have not taken samples from exactly the right spot so although preliminarily findings look good, there is a possibility that they are not.
I will update again once I hear from the ONC and what the plans are going forward, but at least things are not as bad as I thought they may be. Plus I found my way back from the dark side. Thanks again to ALL. I sincerely appreciated the thoughts and suggestions, they truly helped me when I was at my lowest.
Ron

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

Ron, real sorry to hear you have to go thru all that but don't you dare give up!!  I will be praying for you and that all the best medical professionals will be brought before you. Miracles do happen. Believe it. Take care. Think positive.
Opal

Thanks Opal. Your thoughts make me think about the future a little more positively today. After the last 18 months of treatments I need a long vacation, preferably at a beach 🏖 

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

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

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

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