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Robert Macaulay

Durvalumab

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Robert

thanks, I'll ask for a full check of those on july 18th when I get blood and chair again..hope your doing well as you near the end of this time in your healing 

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Tomm-so far my thyroid numbers are good. I nap during my infusion with a warm blanket because it’s a refrigerator in the infusion room. Then I treat myself to Starbucks for a large iced coffee and a snack on my ride to work. 

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Tom

I am doing ok except for the chest infection and the cough that comes with it, Antibiotics  will on my list come August-14 last infusion and yes i feel more of the effects since #18 onwards.

The key for me has been the focus on getting to #26 and dealing with the side effects along the way it does drag out for me now but sure glad i stuck it out.

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Barb  ..Armour Thyroid (thyroid tablets) are used to treat hypothyroidism due to many causes.

Robert .. I'm a long way from #18 but we are all different, maybe side effect happen as the cancer is being attacked and killed when durva exposes it? Stay as strong as you sound, your part of the reason I decided to take this stuff after reading your journey from the beginning and your positive attitude that it will help us.  We really are with a great group to pioneers..  

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Great advice Tomm,

my thyroid counts have been low since chemo and just recently my tsh level was at 45 so I have been put on hormone replacement pills once a day. The thyroids count has led to a brain scan with orbitals  and massive side effects to include complete muscle axacerbation with menial tasking, energy levels and strength nill , weight gain of ten pounds in 1 week ( hypothyroidism  and the eye thang was all due to that) so maybe we nip that one in the bud. can still take Imfinzi during this hormone replacement. Sorry to interrupt the conversation,    Charles

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Yes and it seems you missed out on the dreaded itch and rash. Everyone will have different side effects and did not have to many come to think about it now one ER visit. I should have taken more care in my energy levels due to the fatigue.Bit late now.

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I would like to convey a public apology to Eagle13, Robert Macauley, and all who read and were offended by some comments I made a few posts ago in this forum. I was contacted by Tom Galli about these posts and chose to edit them for content but also wish to go a step further by issuing this apology to all concerned and hope that I will be allowed again in the good graces of my fellow Imfinzi pioneers older and newer. Thank you,    Charles......

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Charles you did not interrupt the conversation, you are a very important part of it and you have show us all  how your mental strength can carry us past the physical issues we have. The TSH you have makes mine look small.

We are all allowed days of low blood sugar, you have gone through some really hard side effects. I'm glad to see your feeling better today. 

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Tomm.

Thank you for that but I must confess that my mental strength sometimes makes my typing fingers "say" things they ought not to say, Thank you for your inspirational words and techniques, as we all go into our different battles to slay our many dragons on our road to the defeat of the beast!      

Charles....

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Hi Tomm-

Thanks so much for asking! I really appreciate our family here, more than you will ever know. Most of the other ALKs are over on FB, which I am not a member (long story).  

Overall, I’m doing pretty well thanks to the targeted therapy, now I’m in “the countdown” for the next scan on 7-23.  A $5 Starbucks gift card goes a long way with the scheduler as I only have to wait one day for the result.  Evidently bribery works outside of NJ! 

Oh- another thing I learned in IAC this week, for cancer patients the ideal Vitamin D level is between 40-50.  Evidently there were some NIH studies about this. Who knew!  I’ve also ditched my selenium tablets in favor of 3 Brazil nuts a day.  The Integrative Team we saw (4 hour appointment with nurses, medical students and attending, pays to be a mutant I guess!!) was really big on Food as Medicine so I can spend less money on supplements and more on acupuncture/Message instead.  I’ll have blood work in two months to re-evaluate.  

Will keep you posted! 

Michelle

 

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Michelle

Yes the Brazil nuts work as i have been taking 2 a day for last six months. I liked your statement the other day not what IF but What is next. Goes right along with my Que Sera Sera cannot get it out of my head now.  lol

Bob

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Well the onc is so pleased with the PET results that I just have to keep going for the infusions and see her after the next CT end of September. Asked her if the Durvalumab causes weight gain, she said no but being cancer free can. Don’t think she means I’m NED yet, I think she’s referring to the little activity left in the tumor. 

Anybody have head pain that comes and goes or a feeling of pressure in your head?  I’m getting a CT on Monday to check it out

 

 

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1 hour ago, Barb1260 said:

Robert-how have your scans been?

Sept-3 after the last infusion August-14 #26 and meet the doc on Sept-6. I have had pressure in my ears for weeks and if not cleared up she will add neck and head to my upcoming Ct. That is excellent news when they tell you to keep going to the next CT. and number #26 gets closer and closer.

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Intresting  trial news April 2019

Trial design

PACIFIC-R is an international, observational study that will enroll ∼1200 NSCLC pts who have received durvalumab as part of early access programs (EAPs) between Sept 2017 and Dec 2018. In the EAP, eligible pts are adults with histologically or cytologically documented unresectable, Stage III NSCLC, regardless of tumor PD-L1 expression, who have not progressed after definitive CRT. Pts received durvalumab (10 mg/kg intravenously) every two weeks. Pts will be enrolled in the PACIFIC-R study after discontinuation of the EAP in participating countries. Data will be abstracted from pts’ medical records at several time points within the 5 year study period. Primary endpoints are PFS (investigator assessed) and OS. Secondary endpoints include PFS and OS in pt subgroups; time to distant metastases; sites of disease progression; adverse events of special interest leading to treatment interruption, discontinuation or medical intervention; and descriptive analyses of demographic and clinical characteristics of pts treated with durvalumab in a real-world setting. Recruitment for this study is ongoing.

https://oncologypro.esmo.org/Meeting-Resources/European-Lung-Cancer-Congress-2019/PACIFIC-R-first-real-world-study-of-patients-with-unresectable-stage-III-NSCLC-treated-with-durvalumab-after-chemoradiotherapy

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Thanks Tom and Steph,

Also answers questions whether prednisone stops the imfinzi from working, NO it doesn't, even the maximum dosage of prednisone (1mg per kg of body weight per day) and even when on 50 mcg of thyroid hormone replacement pills, and even low PDL-1 (10%) THANK YOU LORD!

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Yep, and even after not having a treatment for 2 weeks, then a month the second time, and now this time,6 weeks since any new Imfinzi has entered my body. I do have the best oncologist in the universe working my case though, his name is GOD and the other one, one of the best in the world inasmuch as what to do next about all the adverse reactions and side effects I have experienced while on this treacherous journey that we all walk on Imfinzi. I can hardly imagine that all this started out with a tumor larger than a grapefruit and LITERALLY took up my whole lung, had my right lung partially collapsed  and now is about the area of a WALNUT,  2 1/2 inches x 1.5 inches and the radiologist doesn't use the word LARGE anymore in his description of it in the latest PET/CT, it is now a "masslike conglomeration" I would say this is grounds for a celebration in my household but our work is not yet finished, we have a walnut to eat! Talk at yall later.;...... Charles

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