[Durvalumab]

1 hour ago, Opal said:

BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results.

Best wishes for continued Durva treatment.

Opal

 

Good luck!

[Durvalumab]

On 2/21/2020 at 2:31 AM, DFK said:

Happy Friday to All,

February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕

Questions I had for Oncologist

1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.

R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 

2) What now? 
 

R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
 

Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.

I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 

Thank you everyone for your support. 

Take care, DFK

 

Great news!!!!!!!!!! I do have a couple questions.

My onco told me the tumor will never be gone it is now scar tissue which they hope doesn't contain any cancer. Yours is gone?

Did your onco say that perhaps the chemoradition did the job? When i ask mine about my good response so far she says we don't know if it's the immuno or chemoradiation.

I'm almost a year since treatment started and the last CT said "stable". 9 more Durvalumab treatments, have stopped twice for various problems. 

I don't post much but reading everyone's journey is very helpful. Joe.  

[Durvalumab]

20 hours ago, Sillycat1957 said:

Hi all! both those beers sound gross! Sorry, I haven't drank in over 21 years, I can't, 1 is too many and 1,000 is not enough! Lol! I have another disease 😫 oh well, but y'all go ahead and enjoy. Even if I was a drinker I'd have to say no to flavored beer ugh!

I had infusion #6 this week, blood work ok, nothing new in the aches and pains department. So all's good here 👍. Oncologist fixin me up for a PET scan waiting for radiology to call with appointment. Also I have my appointment on Monday with my PCP he keeps a close eye on my overall health. Any concerns I have he gets them looked at. Neurologist end of month also.

Enjoy the weekend, keep fighting the fight 

20 years here. ODAAT. 

[Durvalumab]

Charles, I ALMOST didn't get mine yesterday. Astra Zeneca is changing the way they distribute the drug at least in my area of Canada. Spent two hours on the phone Monday and someone from the pharmacy that is no longer distributing the drug went and got one from their commercial side and took it home with him kept it in his fridge and hand delivered it to the infusion clinic. Unbelievable how helpful some people in the field are!!!!!!!!!!!!!!!!!! I will be writing a letter to his supervisor about it. Infusion #8 yesterday. Side effects are less but the shortness of breath is a concern to onco, she thinks it's from radiation. Will write about my journey when lawyer gives me the go ahead.  Thank you all for posting, it has help a lot. 

[Durvalumab]

8 hours ago, Robert Macaulay said:

Joe

Do you get your blood work done at Life labs.?

Yes

[Durvalumab]

Yes i do get blood work done at Life Labs. I look at the results before my onco through myehealth. 

20 minutes ago, Barb1260 said:

Hi BC Joe. That sunburn might be from the radiation. I developed that kind of spot on my back 2 months after and before the Imfinzi was started. I just happened to have a follow up visit at the radiologist office and the physicians assistant said it was definitely from the radiation. Welcome aboard. I’m at #8. Hoping you have a non eventful journey. 

Thanks. Hope you are right. My onco said " i've never seen this before " lol. All good now. 

[Durvalumab]

Thanks Bob. I have read all the posts here, more than once. I have watched closely what you and Tom have posted. I was a bit surprised you got different chemo than i did, given we are treated by the same agency. I got cisplatin and etopiside. Same radiation it appears. I started Durvalumab a couple weeks after chemoradiation, i get my 6th treatment tomm. Had alot of the usual side effects but got one i haven't read about. A couple days after 3rd treatment got what can only be described as a sunburn on my chest. Funny thing was no skin changes just felt like a sunburn. thankfully it went way in a couple weeks as my onco was going to stop treatment. I will post more of my battle soon. Thanks.