Robert Macaulay

Woohoo. Brain MRI came back clean. That with the PET results a few weeks ago is making me believe this Durva stuff is doing what it’s supposed to. Only 19 more to go!!!

Thanks folks... I'm hoping as Duva and other new meds put more people into NED we see OS and PFS extended to lifetime PFS for us all. The numbers say there is an 85% chance that lung cancer will come back within 2 years after NED, I missed 2 years by 2 weeks. Then 1 year 2 months...  My numbers are based on when after treatment was Wait and Watch, now many new things like Duva. I don't want a return next year. I can see by the progress reported here that this is working for many and you will soon be part of PFS for a lifetime....
Happy thoughts   
 

Implications of Durvalumab Following PACIFIC Update
This is from the  update.
I think there’s no doubt in my mind that the results of the PACIFIC trial really bring us to a new standard of care in stage III disease in that the potential benefit in long-term survival and overall cure rates is so significant that the risks are really quite minimal in my opinion with regard to that thinking about the risk/benefits sort of thing. I think the investment, from the patient’s perspective, of committing to a year of therapy is not insignificant, but that investment does translate into a 32% reduction in the risk of death. That is very significant, and most patients with stage III non–small cell lung cancer, with a good performance status, their goal is to be cured. And when you say to them that they have a slightly greater than 30% reduction in the risk of death, that is significant to patients, and certainly the risk that we put them at with regard to use of checkpoint inhibition, I think, is minimal relative to that 30%, 30-plus percent reduction in the risk of death.
https://www.targetedonc.com/investigator-perspectives/socinski-consolidation-nsclc/implications-of-durvalumab-following-pacific-update

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

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.

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.

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
 
 

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

Tom
When my thyroid went off the scale my doctor added T3 AND T4 Blood tests to check out the the high TSH levels.

Hey Tomm-
FYI I just met with my new hippie doctor- had to drive all the way up to Iowa City- yeah the mid westerners like their windshield time. 
I was familiar with Meyers Mix- the doctor told me that the blood levels for B-6 need to be carefully monitored as higher doses of B vitamins can cause neuropathy. This was news to us.  
Thought I wouldn’t pass along. Glad to hear you’re doing well! 
Michelle

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.
 

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 

Charles
Thank you for your reply and again it speaks volumes of your wisdom and hope, And I will now look forward to your journey when you resume your Durvalumab  treatment in the near future, and you will have no concerns about me correcting your posts again😎.  All the best on your Durvalumab  journey .Keep us posted, Sorry i could not be more helpful in your present situation.
Stay the course
Bob

Charles
Thank you for your reply and again it speaks volumes of your wisdom and hope, And I will now look forward to your journey when you resume your Durvalumab  treatment in the near future, and you will have no concerns about me correcting your posts again😎.  All the best on your Durvalumab  journey .Keep us posted, Sorry i could not be more helpful in your present situation.
Stay the course
Bob

Charles
Thank you for your reply and again it speaks volumes of your wisdom and hope, And I will now look forward to your journey when you resume your Durvalumab  treatment in the near future, and you will have no concerns about me correcting your posts again😎.  All the best on your Durvalumab  journey .Keep us posted, Sorry i could not be more helpful in your present situation.
Stay the course
Bob

Charles
I think Eagle13 was answering this question of Barb1260. ?    I’m questioning whether this is working. 
Bob

Barb,
I developed a pleural effusion while on Durva.  Ultimately, I was taken off the Durva because of it.   The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me.  I had 4 Thoracentisis done removing 6 liters of fluid from my left lung.  The fluid was cancerous and moved me from 3B to stage IV.   That was last July,2018.  I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday.  I am considered stable with no progression.  There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all.   I recommend asking for a biomarker test.  There are many new treatments beyond immunotherapy.
 
🦅

Bob, what kind of dog breed is yours. Just curious.

Hey there Jersey Girl! 
Great to hear from you!  The other Jersey Girl is probably on the boardwalk enjoying a slice of pie! 
All is well here on my targeted therapy (as Bob says we’re as good as our last scan). I’m up next at the end of this month.  Heading home to see my parents in Bloomfield next month, San Juan Island, WA in September, then Maine in October/November  
Sounds like you’ve been a real trouper through all of this. The anxiety is something we all have to live with.  I have replaced the “what if” scenario with “what’s next”.  Immune therapy  doesn’t work for mutants (yet)  so for now we take those happy little pills and carry on. 
So glad you’re keeping your spirits up!  
Michelle

Hey Bob, thanks for your reply and good to hear from you! Only 3 to go!! Thats terrific.  Yes, Que Sera Sera. I do sing that tune often.  I'll have you in my thoughts and prayers. I look to hearing  from you and updates. You're sort of the leader here for me being so close behind you in number of treatments. 😎
Please keep me posted. 

Hello all!  Been a while since I posted and I see several "Durvies" joined this immuno journey since I posted end of March.  So many of you put great and encouraging info out there. TX!! 
1st... Hi to Kleo..got you in my prayers everyday!  You keep on going! You mention no PDL1 but your lungs cleared up. Couldnt it have been Durva was working?
Bob M  -I'm behind you by just a few infusions, I'm up for #18.  Please keep us posted on how you are and what happens next when you reach the end of infusions. I feel pretty similar to you as far as mutation or lack of or lack of testing. How is your cough? I have one and hope its side effect of the durva.
Eagle, thanks for your encouragement to keep going and not fear scans. 
Hello to 2 Jersey girls😊
Here is my update since early April...in March I was having discomfort in my back near original tumor area so scans were done a week early. Small spot on my spine near tumor area. My Onc stopped Durval and sent me to RAD Onc, who BTW told me a year ago at radiation to eat eat eat. I have been doing so since and gained about 15 pounds and I'm still eating.  Don't think its the Durva. No lack of apetite here. 
Anyway the RAD Onc, he is wonderful!! said he wasnt convinced spot was "C" and was not going to radiate but sent me to IR.  Interventional radiology did biopsy and yippee, turns out not "C" but a minor fracture and I got a little cement. This episode set me back 2 infusions.
I am behind a total of 4 infusions because after my very first 2 fifteen treatments ago, I got awful rash and concern for pneumonitis went on prednisone and then a taper which took about a month.  This set me back 2.  
So after 17 treatments my new rash is slight and only on my forearms. I do get fatigue and dont have ambition and drive the old me had. But I try to stay positive and push myself. Sleep is awful. Anxiety is too. I have hard time not thinking "what if".  My leg, knee and hip joints are fairly stiff. (Note to self..I am a year older)But I thank God I feel as good as I do.  I did notice this went away when I was off Durva for the month. Must admit after a month of no infusions I felt really good. No short breath, cough or stiff bones or muscle aches. 
I get infusion every 2 weeks and typically can go shopping or out to dinner on way home so it really isnt anything like chemo. 
I'm due for scans next week. Scanxiety! I'm trying to stay off the internet because I dont like reading about OS etc.  I am trying to think this treatment will be as my Onc says "with curative intent".  And I'm not underestimating the power of prayer.
Here in the States its a holiday. Happy 4th! (Sorry this was long).
 
 
 

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

Jane Lee
Sorry to hear about the New condition. The good news is the doctors are letting you continue with Durvalumab as its main purpose is to halt the spread of cancer. I get blood work every two weeks prior to my infusion. The key is the three month scans when on this drug and if no progression you continue to the next three months CT.Walking is great way to get excercise everyday as i do with my dog seven days week.Bed time and bloodwork in the morning and docs in the afternoon.
Bob

Hi Dura recipients
Just thought I would give an update.  I can hardly believe this.  My lung specialist and the radiation specialist both consider that the tumour in the bottom lobe of the right lung has died from the radiation and chemo.  But the radiation has caused that lobe to collapse so they can't actually see the tumour.  I am assuming that because there is no sign that the tumour has spread or progressed that they think it is dead.  Apparently. they do not do anything about the partially collapsed lung because it is too damaged from the radiation.  Accordingly, the Dura kills any new tumours that might try to form because there is a very high likelihood of re-occurrence.  At this stage, I refused to think about re-occurrence.  What a shock, I read all these things on Dr Google about syringes and tubes to try to extrapolate the air or fluid in the lung to help it re-inflate and they don't do any of that in radiation cases - they just simply leave it alone.  Wow, no oncologist for six weeks and the radiation specialist doesn't want to see me again.  Only have to do the Dura once a fortnight and a blood test once every four weeks.   It feels so surreal.  I feel I am getting a second chance at life so I am staying on my current regime - no alcohol, no cigarettes, keeping processed foods to a minimum and as much walking as possible.  They have even told me I can begin to lose weight (need it especially after putting on so much with the predisone).  I actually wondering whether as a beginner to this lung cancer stuff that I am just being naive??????
Thank you all for your love, support and encouragement.  It is so lovely to hear from people in the same predicament as yourself.  I must have a look at all of the ASCO abstracts.
Kind regards
 
Jane Lee

Kleo
I been called lots names in my day but Yoda is not one of them.😁 Now i do like the statement your Doc made  Said I'm in alot better shape than I think I am. Got to love female doctors I am biased as i have two😎.One other thing you mentioned I am NOT typical for Durvalumab! It works wonderfully for most people! But  you were the norm rather than the exception but who is going to refuse a excellent drug even with the percentages.
Now that you have given up studying Oncology you can enjoy the summer between treatments.
Bob