Tomm

Tomm-#2 yesterday. I was fine until mid morning today and the fatigue came on suddenly. Right now I could use a nap but that won’t go over well with my boss. What are they doing for your thyroid? And is a fever a side effect?  And no matter how much I eat I am always hungry. 

fever gone..  I asked the oncology doc about my thyroid and he told me to see whoever takes care of that. I have  a naturopathic physician and she is changing my  dose.  I found out that  about 2 years after chemo there can be a thyroid issue and i was already on a small dose but now my numbers are more out of normal so will adjust.

Barb  .. I'm not hungry at all ... guess everyone is different

Hi Barb,
I just got fatigue but  maybe it's left over from chemo. I get infusion #3 tomorrow, hope your goes will too. 
Charles .. so sorry to hear your still dealing with side effects. Did you get side effects with chemo/radiation?
 

Oh boy.  A new set of Durva twins!  Go Barb and Tomm! 

Hi Barb,
it must be a Duva thing, I had a slice of pizza today ..anyone else ?

Duva infusion #2 on Thursday. All I got was this fatigue but still able to mow the lawn and go to the saturday farmers market.  Hope you are all doing well

Duva infusion #2 on Thursday. All I got was this fatigue but still able to mow the lawn and go to the saturday farmers market.  Hope you are all doing well

Hi Barb,
I think it's Ok to complain here, this a place to get and give support and nothing is minor if it's happening to you and it's a bother. I hope you get to go to the beach..
 

Hi Barb,
I think it's Ok to complain here, this a place to get and give support and nothing is minor if it's happening to you and it's a bother. I hope you get to go to the beach..
 

I just got my 1st Duva infusion with no issues or side effects.  My doctor does not want me to take the 50 grams of Vit C in an IV..not enough know about interactions of these. 

Hi Michelle .. thanks for the advise..
This is a link from a web Forum Canceractive, THE COMPLEMENTARY CANCER CHARITY 
 https://www.canceractive.com/article/increasing-fibre intake improves immunotherapy outcomes  
 

this link is from The American Lung Association forum on Duvalumab ..  More folks sharing thier journey     https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/?origin=freshen&page=1#replies
 
 

Charles this is a great bit of informaitionThanks, it was a long read but I picked a few short quotes:
 
Effectiveness: The two co-primary endpoints of PACIFIC, OS and PFS, were both statistically and clinically meaningfully superior for patients who received durvalumab compared to placebo. With a median follow-up of 25.2 months, OS was improved by 32% (HR 0.68), and two year OS was improved from 55% to 66%. Progression free survival was improved by 48%, with a median of 6 months in the control arm and 17 months in the durvalumab group, with 18 months PFS improved from 27% to 44%.
 

Charles  ..I have some of the same thoughts about our unknown journey.  I will be getting my infusion (on april 18th) at a cancer clinic in Oregon that treats over 125 per day with chemo and only 6 are getting Duvalumab.  I would be glad to share my regimen that killed 4 tumors 2 years ago and killed another last month. I got chemoradiation, I eat CBD in the morning, cbd/thc at dinner and THC at bed time. 50 Grams of Vit C in an IV and 12 supplements from my naturopathic oncologist. Let us know how you progress when you get a CT, I am very positive about the new treatment and that is an important part of health .. being an optimist. 
Robert ..thanks for the link ..I'm 95%> positive for PDL-1
Barb.. I'm having 3rd thoughts too as I'm in remission and can't find anyone else in remission getting this. The theory is it will find the tiny cancer that the scan can't see and stop a recurrence. Keep posting as you decide what to do. 
thanks very much for the feedback and I wish you all good health

Tomm,
I haven't heard or read of anyone here on imfinzi as of yet being NED as the drug was just FDA approved in Feb of 2018 for stage 3 so I would guess it is still in it's "infancy" I, like you, have a million questions myself about it as I am new to it also. I have come to the seeming reality that there just isn't tons of folks to ask about their "successful Imfinzi journeys" as of yet. All I can say at this point is I am very much in hopes and prayers that the antibodies in the stuff prevent the pd-1 and the pd-l1 from joining together and my T-cells can destroy the tumor and all residuals therefrom, as they are supposed to do. As far as reapplying the "brakes" on the t-cells when it comes time is just another one of those zillions of questions that seem to be building in a large repertoire within myself. In Jan, when I felt I needed to go to the ER about "possible serious side effects" (pain in the liver area) The ER staff, to include the Dr who treated me, was very hungry for technical info on Imfinzi, what it really is, and the possible side effects and how to treat them, so I interpreted this at the time as not enough is really known in the medical world either, The research that I have done says that only now medical institutions are beginning to educate their staff about "our reality" and we (Durvy's) are on a growing list of people who I suppose would be classified as  "pioneers" on Durvalumab. All they still have to go by it seems is the Pacific trials results in which the FDA's approval was given due to those. Tomm, it sounds like your regimen is second to none though having killed several tumors with CBD, Cannabis and vitamin C which fscinates me and maybe in the future I could pick your brain about those if I can, Thanx, Charles

Hi Barb, 
I read your post this morning and thought about the book by Diana Lindsay, "Something More Than Hope". She is a 13+ year Stage IV LC survivor.   When asked about her miraculous recovery, she responded,  " I would say that I don't know.  I entered into the world of not knowing and I remain in the world of not knowing. You have to be willing to hope and take the risk of hope." 
I totally understand your reservations about treatment unknowns- however- with our cancer therapies we are literally trailblazing the way forward.  Essentially, I think of our group as the 1st generation of hope.  
You might want to ask the doc what happens if you don't elect to proceed with immunotherapy.  You can weigh out the pros and cons.  Let us know what the scan results show.  
Michelle