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Kleo

Good to hear from you again just thinking about how you were keeping yesterday as you would have been nearly finished Durva by now. That was so funny what she was telling you that you were good to go.ūüėé.

Friends keep asking how is your treatment doing one more to go next week to be honest no idea till the scan in Sept as long as I am stable and no progression i will be happy till December Ct.

Have you considered a crash course in Punjabi.

Bob

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Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer

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?¬†ūüėĀ So I'm only at half way thru this chemo/immuno thi

Barb   ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat  .. you may find this interesting  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/

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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‚Äôs a magic ‚Äúball‚ÄĚ solution. ¬†ūüėā¬†

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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!!¬†ūüėė

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.ūüėĄ

 

 

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Good Tuesday Morning to All,

Question for all: Does your health care provider have a regular schedule for follow up Cat Scans? Brain Scans? PET Scans? Etc. Scans

I've read here that some of you get your Cat Scans every 3 months?

I'm a couple hours away from my labs, #15 Durvalumab and MD appt and I'll be finally asking my MD what is "his" standard of care for followup tests. I will report my findings later. 

I received my 1st CAT SCAN, PET SCAN and BRAIN SCAN upon initial diagnosis in September of 2018. Since that time I have had a followup Chest Cat Scan with contrast in January 2019 after radiation and Chemo and again in April and May (without contrast) for my complaints of SOB which turned out to be Grade 3 pneumonitis. April Cat Scan was to diagnose pneumonitis and May Cat Scan was to clear me for restarting Durvalumab.

I'd appreciate your input.

I believe this info will be beneficial for current and future Durvalumab participants. 

With Gratitude and Blessings, DFK

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Hi DFK. My insurance states I can get scans every 3 months for the first 2 years, then every 6 months until 5 years. If there is an issue and a scan is needed for diagnosis, they usually have to have a peer to peer phone conversation to give details why it’s needed. 

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Kelo ..  Yes are more than welcome to hang out here, please.  I know your a women but you I think you have a big set of brass balls.

DFK ..  Here in Oregon at the clinic I go to the the Standard of care starts with everyone gets checked for bio-markers like PDL-1. I get full blood tests every two weeks and 15 minutes later I  see the ONC for 20-40 minutes and then Durva. I get Scans every 3 months and see the ONC  two days later to show me the scan and compare to the last one. 

Question for anyone:  Has anyone with some PDL-1 had to stop getting Duva because of progression or new cancer?

 

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DFK -

I received a CT (w & w/o Contrast) as part of the initial diagnosis. This was followed by a CT Guided Lung Needle Biopsy, followed by an EBUS, followed by a PET Scan, followed by a Brain MRI, all completed before starting the Concurrent ChemoRadiation Treatments (34 Radiation Treatments and 7 Carbo/Taxol Chemo Infusions over a 7 week period). I then had a month off and then a CT Scan (w&w/o contrast). Then I started Consolidation Chemotherapy consisting of 4 Carboplatin and/or Taxol Infusions over a 5 week period. Then I had another month off followed by another CT Scan (Chest, Abdomen & Pelvis). With continued regression and no new tumors, two weeks later I started the Durvalumab treatments. I have now completed 17 Durvalumab Treatments so far and am scheduled for #18 next week. I had a CT scan every 3 months during the Durvalumab therapy. I am scheduled for another CT and Brain MRI for August 23rd and am scheduled to complete my insurance "pre-approved" 24 Durvalumab Infusions in late October.

*I did have to stop the Durvalumab treatments for all of December 2018 to allow my ALT/AST Liver Function Test results to return to normal. They jumped high enough to withhold treatments, but not to permanently stop treatment. I resumed Durvalumab treatments (Treatment #3) on January 4th this year right after a CT scan and blood test on January 3rd.

During the treatments I have always had a blood test every two weeks, but they didn't start checking the TSH level until late May this year and by that time I had hypothyroidism with a TSH level of 44. I am now on hormone replacement meds and the TSH levels are slowly dropping.

I was told somewhere along the line that I could have CT's every three months, a Brain MRI once a year, and a PET scan three times in a lifetime. The CT can be more frequent if deemed medically necessary due to problems or side effects. I was also told that a PET scan during treatments (Chemo/Radiation and Immunotherapy) would be of little value as everything would light up. True or not IDK, but that was what I was told by the Med ONC. It was the Rad ONC that told me that insurance companies limit the PET scans to 3 per lifetime.

I initially saw my ONC once every 2 weeks (a day or two before the infusions), but now am seeing the ONC once every 4 weeks. During the treatments day w/o seeing the ONC, another ONC reviews the blood test and clears me for an infusion that day. The lab is on-site and has a quick turnaround with the exception of a few tests such as the TSH, T3 & T4 tests which take a day or two.

Never had any bio-marker tests yet as my ONC will only order if there are indications of progression and/or if treatment is stopped due to high enough grade side effects.

-Ron

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Charles ‚Äď

Your Jamaican Style Curry Chicken sounds very good and I will give it a try soon, but likely minus most of the habanero pepper. With the dry mouth that I recently developed (likely due to the Durvalumab per the ONC), I can barely stand anything spicy in my mouth. Until recently the spicier the better but I made chili last weekend with only limited amount of hot pepper powder and I can barely put it in my mouth. Everyone else claims its "mild".

I do like Thai Curry, so I will definitely give the Jamaican-style curry powder a shot.

Thanks -Ron

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Tom G - Thanks for the dry mouth tips, the Chloraseptic sore throat spray in my mouth before bed certainly helped. I also purchased some mint flavored dry mouth tablets that you let dissolve in you mouth. Those help some as well. -Ron

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Charles -

pH test strips are on order so I can at least start monitoring my urine ph levels. Before I try to buffer it, I want to get a baseline level established. As I have been on multiple heart meds for years, my Cardiologist has me taking Pantoprazole Sodium Tabs which is a "Proton Pump Inhibitor"  that reduces stomach acid. That in turn increases the pH in the stomach, so before I start "buffering" with a sodium bicarb drink, I want to see where I am first.

Thanks for the idea and I did read the studies on the subject that you referred to. I also read about the studies involving curry powder and cancer. I don't believe there was any definitive conclusion regarding the curry powder and cancer (except for in a petri dish), but we all have to eat, so why not add curry to our diet.

Thanks again - Ron

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All (or Anyone) - 

I am curious, for those of us that have lung cancer, between the cancer itself, the fibrosis that develops due to the radiation and any dead cancer tumors due to the chemo, radiation and now the immunotherapy, it obviously will effect our lung capacity. My ONC never, nor any of his nurses, ever checks my Blood O2 levels with a Fingertip Pulse Oximeter. (I did request the PA do it once, which she did, but I could tell that she was a little annoyed as she had to go find one). I would think that they would be monitoring O2 levels as it's quick, easy and cheap to do so. Does anyone routinely have their checked as part of their meetings with the ONC's? IF not, maybe one of the medical professionals on here could explain a possibility of why not. 

Just curious. (I have a finger O2 Oximeter on order so I can monitor O2 levels myself).

Thanks -Ron

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two links of interest

Immunotherapy Patients Should Be Monitored for Destructive Thyroiditis

https://www.cancernetwork.com/ata-thyroid-cancer-2016/immunotherapy-patients-should-be-monitored-destructive-thyroiditis

Updated 3-Year Data Confirm Prolonged Survival Benefit With Durvalumab in Stage III NSCLC  July 10th

https://www.targetedonc.com/news/updated-3year-data-confirm-prolonged-survival-benefit-with-durvalumab-in-stage-iii-nsclc

 

 

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Ron,

All my doctors check my O2 saturation with a Pulse Oximeter during vital collection. We also purchased on for home use and it confirms the impact of summertime polluted and excessive pollen air that hampers my breathing. My O2 goes from a normal 98 to 92 when I experience chest congestion.

Have you seen or do you see a pulmonologist. One of their baseline tests is to determine lung capacity. Mine is about 38% of normal but that allows leading a near normal life as long as running and uphill jaunts are not contemplated.

Stay the course.

Tom

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Ron, I'm on almost identical treatment plan except I only see the Onc after the scans. Otherwise its a nurse practioner. They check 02 with vitals each time with a finger thing, then before and after infusion. I'm expected to get 26 vs 24 infusions. Blood work is done each visit, also tsh for thyroid.

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RonH

you are a very wise man, your first accurate urine ph reading will be at your second pee. I don't even test the first because you are just clearing the pipes during that one. Having your heart situation I wouldn't start out with any more than 1 tsp of bicarb and 1 tsp of molasses or syrup to 1 cup of tap or spring water per day until finding out how your system deals with it. Do not attempt to take so much trying to change ph of blood tests as this is not possible because the body keeps it's blood ph level at a constant, buffering only adds to the amount of bicarb in the blood and only raises ph levels in the urine , saliva and most probably internal organs but apparently has a lot to do with the metabolism of cancer, causing it to starve itself by hiding and not uptaking for too long, or causing it to make a desperate move to grow while being too damaged by radiation, chemo, or immunotherapy to do so thus causing it to experience cell death or "commit suicide". At the very least cancer uncovers itself so the imfinzi , radiation, and chemo will work better and all these have been researched and verified by Moffitt en vitro and en vivo so sounds like a win-win to me, It's just what I can do to help it along and if it helps just one person beat theirs then I am okay with that. I cannot tell you if the bicarb causes side effects to worsen but I have taken a royal beatdown and suspect that it does but cannot prove that. The Curry powder recipes all make the cancer inflame up and cough for a while after eating it so I eat it everyday and don't worry too much about what statistics say about that one..keep us posted,.... Charles

 

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Good morning all! I would appreciate your opinion or feedback if you have had experience with this.  Some here have noted eye or vision changes but not specifically cataracts.

Are cataracts a side effect of Durva? I didn't think so and my medical team said no. I have had slight cataracts before immuno but in recent months seems they are progressing and becomming more annoying. Ok I know they sometimes come with ageūüėäbut I'll take all the years I can get!

I'm waiting and trying to hold off few more months until finished the total infusion treatment. Both my Onc and eye doc said doing now should not pose a problem.  However, I'm leaning towards waiting because without realizing it, I got a flu shot and my 2nd or 3rd immuno infusion the same day many months ago, and also broke out with a total body rash that caused me to stop treatment and start heavy duty steriods. 

Would appreciate your input or experience. Also, curious do you get a flu shot during treatment?

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Opal

I mentioned last year on this subject of flu shots and Durvlumab. The concern is getting the flu shot on the same day as your infusion. The problem is they do not know at this stage what causes the reaction in some people. The solution is not to get your flu shot on the same day as the infusion. And all should be good.

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4 minutes ago, Robert Macaulay said:

Opal

I mentioned last year on this subject of flu shots and Durvlumab. The concern is getting the flu shot on the same day as your infusion. The problem is they do not know at this stage what causes the reaction in some people. The solution is not to get your flu shot on the same day as the infusion. And all should be good.

Oh Thank You!  Absolutely, you did mention this. I do remember now. And I definitely am holding off for flu shot until finished with infusion just to be sure. 

 

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