Tomm

Hey Tomm. Going for #6 tomorrow. Got my results for last weeks PET/CT. lymph node is inactive and no longer large-death to that spot of cancer. Main tumor is now 2.8cm and not very active. Radiologist gave me the lowdown on Tuesday. Small pleural effusion-he wasn’t concerned about it but he showed me the pic, it’s very small compared to other pics I’ve seen. Will get onc’s opinion on that tomorrow. 
I actually flew north this past weekend and had no problem with fatigue like I thought I would. I’m feeling normal almost-whatever normal is. Enjoy the weekend 

Hello  All.. Hope we all have great CTs ..
My infusion #7 is due this thursday.  I asked my Doc. if I could get my infusion a day early to help with the fatigue when I go to a 3 day event in the woods that starts this friday and he said insurance would not allow early and  suggested I skip this week. He said as this is  a marathon a week break is OK with him and it's his idea.  I get a CT July 16th and infusion #7 on July 18th.  Sounds like a lot of us are getting a CT .. Please post your results..
To help with fatigue I got a "Myers cocktail"   from my naturopathics oncologist.
Myers' cocktail containing:
5 mL of magnesium chloride hexahydrate (20%)
3 mL of calcium gluconate (10%)
1 mL of hydroxocobalamin (1,000 μ/mL)
1 mL of pyridoxine hydrochloride (100 mg/mL)
1 mL of dexpanthenol (250 mg/mL)
1 mL of B-complex 100 containing:
100 mg of thiamine HCl, 2 mg of riboflavin, 2 mg of pyridoxine HCl, and 2 mg of panthenol
100 mg of niacinamide, 2% benxyl alcohol
5 mL of vitamin C (500 mg/mL)
20 mL of sterile water.
 

I’m questioning whether this is working. Pet scan report showed more shrinking and SUV 2.3?(I didn’t print it yet) of the main tumor and the lymph node is gone. But now I have a small volume pleural effusion and larger airspace disease with lower SUV?  From what I’m reading, pleural effusion puts me at stage 4 and prognosis is 6 months?  How could that be if the main  tumor is going away and no other hot spots. I’m going to freak out before my appointment on Thursday. 

Hey Barb.    Our fatigue is real and it alters our lives, scanvity is a real side effect, living with hope is real too. There are about 20 people getting Durv where I get mine and they are all doing well with no one stopping from side effects. They told  me that's the normal here. Stay hydrated and be happy your doing so well...I am

Hey Barb.    Our fatigue is real and it alters our lives, scanvity is a real side effect, living with hope is real too. There are about 20 people getting Durv where I get mine and they are all doing well with no one stopping from side effects. They told  me that's the normal here. Stay hydrated and be happy your doing so well...I am

Charles -->>>  Great news!!  Your a real fighter and a "I can take it guy" and it sounds like things are much better for you now...The future looks bright, you may need sunglasses..
Barb -->> How are you doing after #5?
Me-->>  I got #6 on thursday and just got some fatigue, going to the saturday farmers market today.
 
 

Hi Kelo,
You really have an attitude of such a fighter and taking everything they toss at you and  believing in your future. Positive  forward thinking is a good thing for all of us.   I am really sorry to hear your dealing with pain and I hope your team helps. I hope you have great success with your new protocol. 
Rower..  That's some nice research you did reading the Society of Oncology Association. (ASCO) abstracts. I'll try and read that too.
Possible Durvalumab people:  I want you to know that not everyone gets bad side effects but some that do are nice enough to share that information with us so we know what can happen and what to monitor.  I am getting infusion #6 on Thursday, my thyroid is off THS 29.63 and I have fatigue and that's all. I have a Naturopath Oncologist that has me taking 18 natural supplements & coconut water. 
Other Durvalumab Patients:   Please post that you are doing well or not and share that good and the bad, it will help others to know we are not alone.
good luck fellow travelers

Jane  Lee   ..  great news to hear your tumor is dead 

Jane  Lee   ..  great news to hear your tumor is dead 

Hi Kelo,
You really have an attitude of such a fighter and taking everything they toss at you and  believing in your future. Positive  forward thinking is a good thing for all of us.   I am really sorry to hear your dealing with pain and I hope your team helps. I hope you have great success with your new protocol. 
Rower..  That's some nice research you did reading the Society of Oncology Association. (ASCO) abstracts. I'll try and read that too.
Possible Durvalumab people:  I want you to know that not everyone gets bad side effects but some that do are nice enough to share that information with us so we know what can happen and what to monitor.  I am getting infusion #6 on Thursday, my thyroid is off THS 29.63 and I have fatigue and that's all. I have a Naturopath Oncologist that has me taking 18 natural supplements & coconut water. 
Other Durvalumab Patients:   Please post that you are doing well or not and share that good and the bad, it will help others to know we are not alone.
good luck fellow travelers

Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... 
I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL
 
JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva.
That's just ME though...I'm pretty weird! 😏
 
 

I’m willing to sell tickets to that show down tomorrow!  Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts.  It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation.  Early studies suggest good results in PFS.  
Ask the doc to show you which abstract is most applicable and have them provide you with a copy.  Sounds like this is going to be worth it in the long run.  
Good luck-lock and load.  

Thanks to all of you I feel so much better having people who are going through the same/similar treatments.  It is such a relief to be able to express view/have discussions etc. with people who are experiencing similar issues.  Thanks to you all I don;t feel so alone.  My family is great and are very supportive but just hearing from you guys makes the fight worthwhile.
Take care everyone.
Kind regards
 
Jane Lee

Charles,
really sorry to hear you are having a delay in durva with all your side effects. It sounds like you have the will to withstand the obstacles it's throwing at you and the knowledge that it is helping. I think it's important to be an optimist like you and Kelo..It helps me to stay positive thanks for that.

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Kelo,
I don't taste it, I put it in capsules and took it every 8 hours. If you keep taking it you will build up a tolerance and can take a larger does. Thc kills tumors too...
keep us posted 
 
 

Hi Kelo,
your positive attitude helped me make the decision to take Durvalumab. The posts you make offer all of  us hope to keep taking what gets thrown at us and fight back with a forward attitude.  I a few years ago when I was getting chem/radiation I also ate CBD/THC oil and killed 4 tumors with the combo.
There is a lot of research and some clinical trials using CBD/THC for brain cancer. I did a google search and found a few links that offer hope.
This link is from us gov. site  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5964193/
and  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6200872/
a lot of articles from this search  ..cannabis brain tumor drug hope
CBD's Role in Beating Deadly Disease Uncovered in Blood-Brain Barrier Study
https://www.inverse.com/article/55030-cbd-could-help-deliver-chemotherapy-drugs
wishing you the best on your travels... 
 
 
 

Hi Kelo,
your positive attitude helped me make the decision to take Durvalumab. The posts you make offer all of  us hope to keep taking what gets thrown at us and fight back with a forward attitude.  I a few years ago when I was getting chem/radiation I also ate CBD/THC oil and killed 4 tumors with the combo.
There is a lot of research and some clinical trials using CBD/THC for brain cancer. I did a google search and found a few links that offer hope.
This link is from us gov. site  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5964193/
and  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6200872/
a lot of articles from this search  ..cannabis brain tumor drug hope
CBD's Role in Beating Deadly Disease Uncovered in Blood-Brain Barrier Study
https://www.inverse.com/article/55030-cbd-could-help-deliver-chemotherapy-drugs
wishing you the best on your travels... 
 
 
 

this link https://www.oncologynurseadvisor.com/home/cancer-types/general-oncology/cannabis-reduces-response-rate-to-immunotherapy-for-cancer/  
 
I believe it helps to keep side effects away and cures

I found this link I want to share.      This is  Updated Pacific Study Data 
IMFINZI® (durvalumab) is the only immunotherapy to demonstrate overall survival at three years in unresectable, Stage III non-small cell lung cancer
 https://www.astrazeneca-us.com/content/az-us/media/press-releases/2019/imfinzi-durvalumab-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer-06012019.html
These are a few of the natural supplements I take that are anti-inflammatory.
Fish oil caps
turmeric extract called curcumin 
cgf chlorella
CBD caps ..I don't take this the day before or for 2 days after infusion
Propolis  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4345176/
berberine
magnesium
melatonin
 
 
 
 
 

I found this link I want to share.      This is  Updated Pacific Study Data 
IMFINZI® (durvalumab) is the only immunotherapy to demonstrate overall survival at three years in unresectable, Stage III non-small cell lung cancer
 https://www.astrazeneca-us.com/content/az-us/media/press-releases/2019/imfinzi-durvalumab-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer-06012019.html
These are a few of the natural supplements I take that are anti-inflammatory.
Fish oil caps
turmeric extract called curcumin 
cgf chlorella
CBD caps ..I don't take this the day before or for 2 days after infusion
Propolis  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4345176/
berberine
magnesium
melatonin
 
 
 
 
 

I hope your eyes improve, I live in the grass seed capital of the world and sometimes I can see yellow smoke float by (hay fever) so far I'm OK.
Duva infusion #4  ..  just some fatigue, all blood work good. Hope you all are doing well
 
enjoy the season

Charles,
It's really great to hear your great news  and it  let's us know it does work. What is your PdL-1 expression % ? It sure is nice that there is a treatment after chemo/radiation for us. 

Charles,
That's great news, you give us hope with your posts
enjoy your great news... we are

Just got my chest CT Scan and disk and popped the disk in the old PC and it does appear that we do have pretty good shrinkage, just how much I don't know exactly but it is definately smaller in volume and shape. will know more when I get the report from the radiologist as to the particulars but the thing is ragged and tattered looking and smaller .This to me makes taking the Durvalumab with side effects worth it at this time. Now I just hope no new mets or anything or plueral effusions but won't know for sure until after the reports but lungs actually feel better than they have in a couple years. So hallejuhah for now