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Charles

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  1. Like
    Charles got a reaction from Tom Galli in Durvalumab   
    congrats Bob on the last one, you are a true brave warrior.
  2. Like
    Charles reacted to Robert Macaulay in Durvalumab   
    Thanks Michelle
    Just heading out the door for the last  one, Twenty six consecutive infusions and now Durvalumab will be a thing of the past. What next.😎
    Que Sera Sera
    Bob
  3. Like
    Charles reacted to Barb1260 in Durvalumab   
    Next is NED and a wonderful future life. 🥳
  4. Thanks
    Charles reacted to DFK in Durvalumab   
    Good Tuesday evening to you all
    Attached you will find response from AstraZeneca re: my query on imaging recommendation for best practice. I got back a lot of words but basically they do not have any recommendations while receiving Durvalumab but while in a clinical study, patients were scanned every 8 weeks. (TOMM)  If receiving Durvalumab and progression is noted, Durvalumab is discontinued as it is deemed ineffective and your MD will determine your next best course of action.
    LAUREL and CHARLES-Thanks for throat wash recommendations. 
    CHARLES- Thank you for being simpatico on wait time to see ENT specialist. It is a way of life here. And it pisses me off. I am still noodling if I will wait until November or ruffle a few feathers to get seen in a more timely manner. I pray that I am taken care of but I also know that action is sometimes warranted to get some proper and timely care. Congrats on #11, how wonderful to be on track. 
    TOMM- I spend my infusion time catching up on e-mails and texts or lunching with friends. An hour goes by pretty fast. But I cannot resist by sharing thatr I do have a playlist that I listen to when exercising and it consists of THE ROLLING STONES, VAN MORRISON, THE DOORS, JANIS JOPLIN, THE EAGLES, JEFFERSON AIRPLANE to name a few.....spirited music gets me thru a tough routine. To say that the PBS Woodstock 50th anniversary special was a hit with me is truly an understatement.
    Take care everyone
    With Blessings and Gratitude, DFK
     
    AstraZeneca Imaging Screening.pdf
  5. Like
    Charles reacted to Tom Galli in Durvalumab   
    Robert,
    Sorry, I miss read the information also. But, let's really hope for a NED outcome!
    Stay the course.
    Tom
  6. Like
    Charles reacted to Laurel in Durvalumab   
    Bless you through these treatmenrs. Soft hugs.
  7. Thanks
    Charles reacted to Robert Macaulay in Durvalumab   
    Tom
    That was another point in posting that a individual was NED after seventeen infusions with Durvalumab and was very pleased sadly she had to discontinue which can happen anytime during the drug as the doctor pointed out to me last September.
  8. Like
    Charles reacted to Barb1260 in Durvalumab   
    DFK-sorry about your friend’s mom. I think mental attitude has a lot to do with the outcome. My twin sister passed from NSCLC after 11 months. She gave up as soon as she heard stage 4.  I refuse to give up or give in. I’m stubborn. 
  9. Like
    Charles reacted to Barb1260 in Durvalumab   
    Tomm-#8 was status quo. Nothing new so far. Only 18 more than I can graduate with Bob. 
    Bob-I bet you are going to have the biggest smile Wednesday. Can’t wait to hear the outcome of your scans. I’m betting NED. 
  10. Like
    Charles reacted to DFK in Durvalumab   
    Barb1260
    The thing about the small weight gain of 15lbs......My son put me on a rowing machine and I asked him how long would it take to burn off those brownies I are with lunch....He told me an hour of rowing would do it......I jumped off after 5 minutes. No one should work that hard for a few brownies!! Looks like those 15lbs are here to stay.
    Charles
    Easy Peasy recipes I love.....my husband appreciated the change 
    Bob
    Read the excellent book reviews on Amazon for THE EMPEROR OF ALL MALADIES. Thank you for the recommendation. The Ken Burns PBS film-Episodes 1, 2 and 3 are available for free if you are an Amazon Prime member:  https://www.pbs.org/kenburns/cancer-emperor-of-all-maladies/episode-guide
    Just a few thoughts
     I lost my friends mother to pancreatic cancer. In mid April they told her she could beat it with chemotherapy and surgery. So she went ahead and had a stent put in her bliliary duct, had a port put in for infusions and started her chemotherapy in June. By July they told her she had a month to live. She passed last night. I don't know all that caused the sudden change in her prognosis but I do know that she became defeated and depressed with the diagnosis and never, not once expressed  her will to live.....just saying
    With Gratitude and Blessings
    DFK
  11. Like
    Charles got a reaction from Opal in Durvalumab   
    Opal,
    yes cataracs are a side effect from durva, have developed one in my right eye myself and eye problemws are also a side effect such as vision changes but you need an eye exam to know if it is durva related or age related or diabetes etc..I had to get a brain and eyeball mri scan also and all mine was thyroid related, in other words, durva related.
  12. Like
    Charles reacted to Opal in Durvalumab   
    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 age😊but 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?
  13. Like
    Charles reacted to Tomm in Durvalumab   
    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
     
     
  14. Like
    Charles reacted to RonH in Durvalumab   
    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
  15. Like
    Charles reacted to RonH in Durvalumab   
    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
  16. Like
    Charles reacted to RonH in Durvalumab   
    Charles –
    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
  17. Like
    Charles reacted to RonH in Durvalumab   
    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
  18. Like
    Charles reacted to Tomm in Durvalumab   
    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?
     
  19. Like
    Charles reacted to Barb1260 in Durvalumab   
    Hey Kleo  glad you’re visiting and we for sure want you to stay with us. Personally you make me laugh out loud. 
  20. Like
    Charles reacted to Kleo in Durvalumab   
    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? 😁
    So I'm only at half way thru this chemo/immuno thing they are doing. Had to stop and do some tests on my digestive stuff because it's actin up. If it aint one thing, it's another.
    My onc is a lovely Indian lady....love her. But holy COW does she talk fast. And that accent....I usually just kinda nod at her. LOL
    This last time she was doing the exam and she kept saying...your balls are full. Said it 2 or 3 times...your balls are really full. I piped up...I don't have BALLS silly. She said no no...your balls...they are full. I just kinda stared at her funny...said ok...and went on my way.
    Got home and thought...do you think she was saying BOWELS?
     
    🤣🤣
     
  21. Like
    Charles got a reaction from DFK in Durvalumab   
    DFK
    Thanks
  22. Like
    Charles got a reaction from DFK in Durvalumab   
    Now come on D,
    I DON'T SOUND THAT DRAMATIC NOW DO I?  But dang straight, may not get to fight this particular battle but once and too many of my loved ones have lost to it (mother, aunt, mother in law and 3 more of us have it and the precious ones who lost didn't get but one shot so GUNG HO, LEFT-RIGHT-LEFT AND BATTEN DOWN THE HATCHES and pip pip and all that jazz, my full attention with everything I can throw at it IS necessary , I do not intend to lose this one. My onc and medical team is very grateful and GOD is with me so why not? TEN HUT with compassion and understanding-  Charles
  23. Like
    Charles got a reaction from DFK in Durvalumab   
    DFK,
    Killing it not healing it, and looking it square in the eye while it is dying and saying "your'e no daisy, you're no daisy at all!" as far as the peppers, just add a few drops of srarancha hot sauce to the recipe and voila! The curcumin in the curry has an anti cancer affect I guess, but you will notice the discomfort in the cancer and the dish over rice is delicious.just vested in permanent survival not just prolonged life with immuno. It isn't easy making a grapefruit just disppear. I not only inhale the nebulized sodium bicarb but drink the bicarb mixed with black strap mollasses and this acts as a poisonous trojan horse cocktail to the cancer since the cancer feeds on sweets, the bicarb bonds with the molasses and attacks the cancer when consumed by it and raises ph levels to cancer killing levels of 8.0 to 8.5 and chips away at it a little at a time and keeps it off balance while the Imfinzi busts a leg off in its thunder bucket. Enjoy the recipe with those hot peppers you've grown, later, Charles
  24. Like
    Charles got a reaction from RonH in Durvalumab   
    Here is a recipe my cancer just despises, it contains jamaican style curry powder and is yummy but spicy but when I eat it the cancer just freaks out, I want this demon to suffer every moment it invades my body and let it know in no uncertain terms just how I feel about it with every bite I take which has this badia curry powder in it. If it aint ice cream, it has this curry powder in it and my family just loves it too. This recipe I spoon over parboiled rice and also make stews out of it by adding potatoes , carrots and celery. It just makes the cancer run for cover every time, ENJOY!
     
    Jamaican Style Curry Chicken
        1/4 cup vegetable oil
        1 onion, chopped
        1 tomato, chopped
        1 garlic clove, chopped
        2 tablespoons Badia Jamaican-style curry powder (the more the merrier though up to a quarter cup)
     
        2 slices habanero pepper (optional)
        1/4 teaspoon ground thyme
        2 skinless, boneless chicken breast halves, cut into 1 1/2-inch pieces
        1 cup water
        1/2 tsp or more salt to taste
        Heat vegetable oil in a skillet over medium-high heat; cook and stir onion, tomato, garlic, curry powder, habanero pepper, and thyme until onion is golden, about 7 minutes. Stir in chicken and cook until chicken is lightly browned, about 5 minutes.
        Pour water into the skillet, reduce heat to low; cover and simmer until chicken is no longer pink at the center, about 30 minutes. Season with salt.

    Per Serving: 210 calories; 15.4 g fat; 6.2 g carbohydrates; 12.5 g protein; 30 mg cholesterol; 322 mg sodium. Full nutrition
  25. Thanks
    Charles reacted to DFK in Durvalumab   
    Charles,
    Parody aside, Charles Creed was meant to be a compliment, admirable traits where your tenacity are giving you results. 
    With Gratitude and Blessings, DFK
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