Rower Michelle

Hi Barb, 
I found Manuka honey at Trader Joes and Whole Foods.  It's also available on Amazon.  It's from New Zeland,.   Happy hunting... 

Ron-
So sorry to learn of your latest update, will be thinking of you as you go through the next steps. You guys in the Durva Club rock and roll.  

Ron-
So sorry to learn of your latest update, will be thinking of you as you go through the next steps. You guys in the Durva Club rock and roll.  

Uneventful #16 infusion yesterday. All labs within normal parameters. 
Repeat DLCO test at 64% today, up from 44% after pneumonitis in April. Don’t know if time and healing accounted for generous jump in DLCO value but I'd like to attribute it to my tenacity in starting an exercise program. Baby steps to wellness.....I'll take it.
Carry on everyone.
With Gratitude and Blessings
DFK

Time off is well deserved Yoda Bob!  The Durva Club is official, complete with its emerging play list!   You’ve been a beacon of hope- thumbs up! 

Infusion #9 done yesterday with new energy
update on blood work from #8
TSH  was 139 and now 113
the others numbers got better too but this is the one that messed with me a lot. I started taking vothyroxine , (synthroid) and within a week  I felt much better and ready to go to the Farmers Market tomorrow.  Everyone NEEDS to have your thyroid checked!!  Fatigue very light and no side effects that I know of..
enjoy your summer

Time off is well deserved Yoda Bob!  The Durva Club is official, complete with its emerging play list!   You’ve been a beacon of hope- thumbs up! 

Time off is well deserved Yoda Bob!  The Durva Club is official, complete with its emerging play list!   You’ve been a beacon of hope- thumbs up! 

Time off is well deserved Yoda Bob!  The Durva Club is official, complete with its emerging play list!   You’ve been a beacon of hope- thumbs up! 

Time off is well deserved Yoda Bob!  The Durva Club is official, complete with its emerging play list!   You’ve been a beacon of hope- thumbs up! 

For bravery, intrepidity and resolve in engaging life-threatening lung cancer, and for pioneering a new treatment path bringing hope to countless lung cancer suffers, Robert Macaulay is hereby awarded the Cancer Combat Action Badge* for enduring 26 infusions of Durvalumab.
Stay the course.
Tom Galli, LUNGevity LCSC Moderator
*Photo is a US Army Badge awarded to soldiers who experience live-fire contact with an enemy. Experimental infusion of chemotherapy is a far more dangerous condition.

Thanks Michelle
Just heading out the door for the last  one, Twenty six consecutive infusions and now Durvalumab will be a thing of the past. What next.😎
Que Sera Sera
Bob

Good luck to ya Bob!  Last one!!!

Michelle...I can't drink that much! Yuck! I'm just taking ex-lax. I think it's their dang drugs...backed up my pipes with all that stuff they give.
Lovely conversations we have eh? LOL    Hi Barb!! 😘
Bob I can't believe your treatment is almost over already! You've done pretty good on the durva! Well it's had some side effects but they all seem to have something.
Hey maybe that was a side effect they forgot to tell me about.
Redbull gives you wings. Tecentriq gives you balls.😄
 
 

Kleo
If you ever have to go for a colonoscopy you will never have to worry about your pipes. Trust me on that one.😎
Bob

Hi Kleo-
Good to hear from you.  I think the DurvaClub is always open to you since, this all started as the twins, the Bob and Kleo show! 
Try some fresh lemon juice (2tsp)  1/8 of a tsp of stevia, and three drops of tobasco sauce into 33 oz of smart water.  It’s a magic “ball” solution.  😂 

All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁
So I'm only at half way thru this chemo/immuno thing they are doing. Had to stop and do some tests on my digestive stuff because it's actin up. If it aint one thing, it's another.
My onc is a lovely Indian lady....love her. But holy COW does she talk fast. And that accent....I usually just kinda nod at her. LOL
This last time she was doing the exam and she kept saying...your balls are full. Said it 2 or 3 times...your balls are really full. I piped up...I don't have BALLS silly. She said no no...your balls...they are full. I just kinda stared at her funny...said ok...and went on my way.
Got home and thought...do you think she was saying BOWELS?
 
🤣🤣
 

Opal Thanks
Yes time just flies when your having fun and overTwenty two thousand views in one year and growing.The intresting part for me is just starting once you stop the drug. 
What next  Que Sera Sera😎
Just back in from one hour great walk on the trails with the dog

Bob😎,    it is coming up on the one year anniversary in a few days, of YOU starting this forum.  I just want to say THANK YOU!!   
You have shared so much and been an inspiration. I'm counting down infusions not far behind you I pray. Time sure has flown by.
Thanks to all posting and connecting here.
 

RonH
Great to here things are settling down for you, and to be still working that is feat in itself, The standard procedure calls for 26 infusions to completion. Yes there is a high attrition rate with this drug and i was aware prior to starting last August, also i said to the doctor last week i would do it all over without hesitation despite the side effects, As long as this drug stops progression and i am stable and scans are good it can stay in my system for ever and ever.This  is now seventeen months of treatments /appointments and i will use your quote  I kind of got the impression that as long as the CTs / MRI indicated no progression, that we move on to a “wait and see” period. That has been my doctors statement from the beginning and i expect the same reply come Sept-7 when she gets my Ct results. Your on the home stretch to #26
Bob

deleted by poster redundent

Sorry this is so difficult for you Tomm. Hopefully it will all straighten out and you can continue until the end. 

My Experience:
Last year back in May/June of 2018 at the age of 61, I was diagnosed with Stage 3A NSCLC after a low dose CT scan indicated possible tumors. A full CT was next along with a Lung Needle Biopsy followed a few weeks later with a endobronchial ultrasound (EBUS) with needle aspiration that was used to confirm the diagnosis. I also had additional CT Scans, a Pet Scan and a Brain MRI to confirm the staging. In mid-June 2018, I started concurrent radiation and chemo treatments for 7 weeks (radiation daily and chemo once per week). Then there was a short month long break to recover some, then followed by of a higher dose consolidation chemotherapy weekly over the next 5 weeks. During this second chemotherapy is when my hair said enough is enough, we’re out of here and I lost every single hair on my body. I had always wondered what I would look like bald but was disappointed to discover that I would have an uncanny striking resemblance to Uncle Fester of the old Adams Family TV show. Although I had some other minor side effects from the radiation and chemo, I really didn’t experience anything really significant and little or no nausea. The chemo did significantly lower my white blood cell count and I was advised to avoid crowds as much as possible.  My ONC said that I handled the chemo better than 95% of his patients. Post chemo radiation CT’s indicated good shrinkage of all tumors and no new ones. Of course I was also developing radiation fibrosis so it is difficult to get good measurements due to all of the scar tissue from the radiation.
I then had another 4 week break and then at the beginning of November 2018, I was started on Durvalumab as my cancer had not progressed after the chemo-radiation therapy. The initial side effect I got was a minor rash and itching everywhere, but not to the degree that concerned my ONC. However after the second infusion, my liver function test results (AST & ALT) went up significantly, and I was pulled off of immunotherapy for the entire month of December. By the beginning of January 2019, my liver function tests returned to normal and my Durvlumab treatments resumed. This time, it had no impact on my liver and those blood tests remained and still are well within normal levels. Several CT scans over the year continued to show shrinkage with no new developing tumors. I also no longer get a rash, however I still itch some, especially for a few days after the infusion. Also I will be fatigued for about a week or so but was still able to continue working full time (office type work). While I do not experience anything in a significant amount, I do have muscle aches, some chest congestion, occasionally mild constipation, and of course the itching. After Infusion #12, they started checking my Thyroid TSH levels as part of my blood tests every other week before my infusion. As it turns out, my thyroid had virtually shut down and I now have Hypothyroidism, likely a side effect of the Durvalumab. This helps explain why  I was getting more and more fatigued every week, plus I was gaining a lot of weight. Also about 6 weeks ago I developed a dry mouth that the ONC also contributes to the Durvalumab treatments. I have now been started on a thyroid hormone replacement pill every day and after almost 6 or 7 weeks now, I can feel my energy levels significantly increasing. I won’t be running any marathons, but of course I didn’t do that before my diagnosis either. The ONC says he is working my thyroid medicine dosage up to the proper level over the next few months. Unfortunately I still have the dry mouth and have now lost being able to taste anything I eat but am very sensitive to anything spicy in my mouth. I can only barely sense sweet and salty, but no real taste remains.
My hair did manage to grow back this Spring, but now kind of curly and thicker than before. My entire life I had straight hair so this is a new look for me, and a whole lot better than the Uncle Fester look I had last winter.
This past Monday (7/29/2019) I received my 17th Durvalumab infusion and hope to be able to get all 24 approved treatments in. My ONC says that he and the others in his practice have had very few patients be able to receive the full course of treatments, with most being pulled off before half way due to the side effects, so I consider myself fortunate to make it this far. Here in another 3 weeks, I have another set of CT scans and another Brain MRI scheduled. I am really hoping for good news. Anyway, I just wanted to share my story and let those out there just beginning their journey into this, that there is hope. If all goes well, I will complete my Durvalumab treatments in late October.
I did ask my ONC what if anything is next and never received a very good answer other than we’ll see how things are at that time. I kind of got the impression that as long as the CTs / MRI indicated no progression, that we move on to a “wait and see” period. Anyone out there have any thoughts or experience with this?
Thanks, Ron

Some recent interesting news going forward
Imfinzi is the only immunotherapy to demonstrate overall survival at three years in unresectable Stage III non-small cell lung cancer.
Data presented at ASCO 2019 showed 57% of patients 
alive at three years vs. 43.5% on placebo
PUBLISHED 2 June 2019
https://www.astrazeneca.com/media-centre/press-releases/2019/imfinzi-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer02062019.html

Such great news to see The Durva Club kicking butt!