Tomm

I got a surprise phone call today from my onc nurse today. The results from yesterdays CT is NED. I was NED during my year of Durva. It managed to keep my cancer away ... good news for all patients. 
 What do you call seagulls that live near the bay?
Bagels.
 

Hi Barb..
I have never gotten a Pet scan and when my last Durva. treatment was cancelled because of Covid in March so was my CT to see if  I was still NED. Today I finally got a CT and a port flush. My thinking was (is) if no one says I have cancer then I don't.
Roseann ..Good to hear your almost in the Done with Durva club 
Summer is here, so I'm moving all of my bad habits outside.
 
 

Hi Barb..
I have never gotten a Pet scan and when my last Durva. treatment was cancelled because of Covid in March so was my CT to see if  I was still NED. Today I finally got a CT and a port flush. My thinking was (is) if no one says I have cancer then I don't.
Roseann ..Good to hear your almost in the Done with Durva club 
Summer is here, so I'm moving all of my bad habits outside.
 
 

Hello Fellow Durvas and Done with Durvas club members ... I'm in the Done with Durva club. My update: My last infusion that I should have gotten in April was canceled, my CT that was due in April was canceled, my port take out was canceled, my port flush was canceled  and all doctors visits canceled. I just got a date for my big reveal CT on July 1st. The last CT in late January showed I am NED and I have gone with the "if no one says you have cancer, you don't have it"  I like that feeling and now I have scan scanxiety again. 
My side effects started around #4 and it was just fatigue.. turned out my thyroid was not being checked and when they did I ended up at 139.. normal in 3.5-4.5.  I got meds to fix it and in a  month or so I was down to 3.6. I did not gain any weight during the entire treatment.  Now that treatment is over I have itching from my knees down to my ankle at night. We are all different...
take care all..enjoy the season
 What did the little corn say to the mama corn?
Where is pop corn?
How do we know that the ocean is friendly?
It waves!

Hello Fellow Durvas and Done with Durvas club members ... I'm in the Done with Durva club. My update: My last infusion that I should have gotten in April was canceled, my CT that was due in April was canceled, my port take out was canceled, my port flush was canceled  and all doctors visits canceled. I just got a date for my big reveal CT on July 1st. The last CT in late January showed I am NED and I have gone with the "if no one says you have cancer, you don't have it"  I like that feeling and now I have scan scanxiety again. 
My side effects started around #4 and it was just fatigue.. turned out my thyroid was not being checked and when they did I ended up at 139.. normal in 3.5-4.5.  I got meds to fix it and in a  month or so I was down to 3.6. I did not gain any weight during the entire treatment.  Now that treatment is over I have itching from my knees down to my ankle at night. We are all different...
take care all..enjoy the season
 What did the little corn say to the mama corn?
Where is pop corn?
How do we know that the ocean is friendly?
It waves!

Hello Fellow Durvas and Done with Durvas club members ... I'm in the Done with Durva club. My update: My last infusion that I should have gotten in April was canceled, my CT that was due in April was canceled, my port take out was canceled, my port flush was canceled  and all doctors visits canceled. I just got a date for my big reveal CT on July 1st. The last CT in late January showed I am NED and I have gone with the "if no one says you have cancer, you don't have it"  I like that feeling and now I have scan scanxiety again. 
My side effects started around #4 and it was just fatigue.. turned out my thyroid was not being checked and when they did I ended up at 139.. normal in 3.5-4.5.  I got meds to fix it and in a  month or so I was down to 3.6. I did not gain any weight during the entire treatment.  Now that treatment is over I have itching from my knees down to my ankle at night. We are all different...
take care all..enjoy the season
 What did the little corn say to the mama corn?
Where is pop corn?
How do we know that the ocean is friendly?
It waves!

Lisa66       enjoy the greatest new lung cancer drug with curative intent
this is true at my house

Lisa66       enjoy the greatest new lung cancer drug with curative intent
this is true at my house

Lisa66       enjoy the greatest new lung cancer drug with curative intent
this is true at my house

Lisa66       enjoy the greatest new lung cancer drug with curative intent
this is true at my house

Ron   ..this new information sounds good to me, my last CT stills shows post treatment things in my lung. When you wake up in the morning you know your still here and you have a large team watching after you. 
Barb  congratulations on making it to #26. I'm starting to feel much more energy now that I'm done
I hope all the Durva club has a great spring and nice gardens
Stay Safe
Do you want to hear two short jokes and a long joke?
Joke, joke, jooooooooooooke.

Ron   ..this new information sounds good to me, my last CT stills shows post treatment things in my lung. When you wake up in the morning you know your still here and you have a large team watching after you. 
Barb  congratulations on making it to #26. I'm starting to feel much more energy now that I'm done
I hope all the Durva club has a great spring and nice gardens
Stay Safe
Do you want to hear two short jokes and a long joke?
Joke, joke, jooooooooooooke.

Ron   ..this new information sounds good to me, my last CT stills shows post treatment things in my lung. When you wake up in the morning you know your still here and you have a large team watching after you. 
Barb  congratulations on making it to #26. I'm starting to feel much more energy now that I'm done
I hope all the Durva club has a great spring and nice gardens
Stay Safe
Do you want to hear two short jokes and a long joke?
Joke, joke, jooooooooooooke.

So very pleased to hear of those having or nearing completing their time in the Durva club and with so many resulting with a finding of NED. Wonderful news and truly an inspiration for many that this gives hope to. A sincere happiness for all of you.
My updates: After my last CT Scan in early March indicated probable reoccurrence/progression of a tumor in my right upper lobe, and a possible new tumor in my middle lobe, my Medical Oncologist who has been treating me for the past two years has now suggested that I obtain a "Second Opinion". He arranged for this second opinion at the Ohio State University James Cancer Center as they apparently have better access to, and knowledge of, various clinical trials. I sorta have mixed feeling regarding the second opinion; on one hand welcoming a second set of eyes (by someone with more ALK Positive experience), but on the other hand, sort of a feeling that I am getting dumped as a lost cause. But being as stubborn as I am, and not willing to give up, I went ahead and met with the second Medical ONC. After the initial consult, the new Med ONC says that I might fit into one or two clinical trials, but I will need another Pet Scan, Lung Biopsy (EBUS) and an more in-depth biomarker testing completed first. (I previously had the Tempus Biomarker test that found my Adenosquamous NSCLC to be Alk Positive and PDL-1 Negative). For the time being, I was advised to continue with my Targeted Therapy TKI Alectinib. The PET Scan is late this week and the EBUS Biopsy the early the following week. Baring any new covid-19 restrictions before then they will proceed as essential procedures. However due to existing COVID-19 restrictions all my appointments except for the actual procedures have been changed from office visits to video chats. Even my yearly appointment with my Cardiologist this week was changed to a telephone call. I was really hoping to get my yearly EKG before being put under General Anesthesia for the EBUS, but apparently due to the COVID-19 restrictions, it's considered an elective procedure and the EKG cannot be scheduled. My past two EBUS procedures were done under "Conscious Sedation" whereas this time the Interventional Pulmonologist says due to the extent and locations of what he needs to get a sample of, he wants me under General Anesthesia. Also worrisome is that I have several heart stents and am in chronic A-Fib, but have to go off the Plavix and Xarelto days before the EBUS. I guess on the bright side, if something does happen, I will already be in one of the leading Cancer and Heart Hospitals in the region. Gotta to try to find a bright side to things.

Hi all 
sounds like quite a journey you are on Ron. All the best and trust all procedures will go well. 
 
Inhad my last Durvulamab deferred due to increasing cough and some exertions breathlessness and an anxiety about COVID virus even though my cough had been well established for some time and my wife and Inessentially in isolation for 19 days as part of New Zealand lockdown. They sent me for swab anyway and a chest X-ray . Bloods all good , swab negative but Xray shows possible radiation pneumonitis in zone of radiation. Upper mediastinum and left upper lobe. Have urgent Chest CT scan Friday and hopefully they will agree to continue therapy. Have been trying to control cough with durotuss ( Pholcodine) . I have a prescription for gabapentin as next step whilst awaiting CT scan and oncologist avoiding prednisone at present
will keep you updated 
Grahame
 
 

Barb ..nice to hear your almost ready to join the I'm Done with Durva club.
I get out of my house but not out of my car.  These are the places that I ordered and paid on the phone and when I get there I call and they put it in the back of my car.
Garden store, hardware store,  pizza shop and grocery..my dog enjoys ride and I like the no traffic. 
Watch a doctor demonstrate how to safely bring groceries home during the coronavirus crisis.
enjoy spring everyone
A photon is going through airport security. The TSA agent asks if he has any luggage. The photon says, "No, I'm traveling light."
 

Hey all. Tomm, I did get #24 on Thursday. All is good. I was so excited to get out of the house🤪

Congratulations, and may NED be your Best Forever Friend.  I love th Done my Durva club.

Tomm. 25 out of 26 is great. Keep checking in with your jokes. 

infusion #26 for this Thursday canceled today. The  CT due after the final canceled, port will not be removed.. canceled.  Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? 
I wish the best for my fellow travelers on this journey ..Stay Safe
 
Why do they call it the novel coronavirus? It’s a long story….
Why didn’t the sick guy get the joke? It flu over his head.
Why don’t chefs find coronavirus jokes funny? They’re in bad taste.
I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it.
Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there.
Finland just closed its borders. You know what that means. No one will be crossing the finish line.

infusion #26 for this Thursday canceled today. The  CT due after the final canceled, port will not be removed.. canceled.  Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? 
I wish the best for my fellow travelers on this journey ..Stay Safe
 
Why do they call it the novel coronavirus? It’s a long story….
Why didn’t the sick guy get the joke? It flu over his head.
Why don’t chefs find coronavirus jokes funny? They’re in bad taste.
I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it.
Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there.
Finland just closed its borders. You know what that means. No one will be crossing the finish line.

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

infusion #26 for this Thursday canceled today. The  CT due after the final canceled, port will not be removed.. canceled.  Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? 
I wish the best for my fellow travelers on this journey ..Stay Safe
 
Why do they call it the novel coronavirus? It’s a long story….
Why didn’t the sick guy get the joke? It flu over his head.
Why don’t chefs find coronavirus jokes funny? They’re in bad taste.
I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it.
Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there.
Finland just closed its borders. You know what that means. No one will be crossing the finish line.

infusion #26 for this Thursday canceled today. The  CT due after the final canceled, port will not be removed.. canceled.  Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? 
I wish the best for my fellow travelers on this journey ..Stay Safe
 
Why do they call it the novel coronavirus? It’s a long story….
Why didn’t the sick guy get the joke? It flu over his head.
Why don’t chefs find coronavirus jokes funny? They’re in bad taste.
I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it.
Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there.
Finland just closed its borders. You know what that means. No one will be crossing the finish line.

infusion #26 for this Thursday canceled today. The  CT due after the final canceled, port will not be removed.. canceled.  Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? 
I wish the best for my fellow travelers on this journey ..Stay Safe
 
Why do they call it the novel coronavirus? It’s a long story….
Why didn’t the sick guy get the joke? It flu over his head.
Why don’t chefs find coronavirus jokes funny? They’re in bad taste.
I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it.
Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there.
Finland just closed its borders. You know what that means. No one will be crossing the finish line.