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Robert Macaulay

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  1. Like
    Robert Macaulay got a reaction from LouT in Durvalumab   
    Just found out the new drug I will be receiving shortly and wonder if anyone is presently on this type of treatment.
  2. Like
    Robert Macaulay got a reaction from Deb W in Durvalumab   
    Hi Kleo
    The infusion took one hour and then the usual 15minute flush. I was in private clinic for the first time and the paper work and also the mixing  of the drug for the infusion as it does not come in bag that took about another hour and that looks like the norm in and out two hours. No other drugs or medication as far as i know. Felt bit tired this afternoon exactly 24 hours after the infusion other than that if Wednesday is good  with no side effects piece cake. They require I get blood work done and meet with doctor prior to each new infusion same as the last Chemo treatment, And I also have CT scan scheduled for October -29 and meet with the Oncologist November-8 That will tell the story if it is working or not.   The life of a cancer patient  Appointments.  lol
  3. Like
    Robert Macaulay got a reaction from LouT in Durvalumab   
    Kleo
    I meet with Oncologist  November- 8th to review the results and make a decision to continue or cancel this treatment I will have had five infusions prior to the scan on October-29. I like quick results one way or another.
    Bob
  4. Like
    Robert Macaulay got a reaction from LouT in Durvalumab   
    And the clinic I use is Bayshore just a coincidence I doubt it.  Just buy good laxative and your good to go.  lol
  5. Like
    Robert Macaulay got a reaction from sashjo in Durvalumab   
    Hi Kleo
    The infusion took one hour and then the usual 15minute flush. I was in private clinic for the first time and the paper work and also the mixing  of the drug for the infusion as it does not come in bag that took about another hour and that looks like the norm in and out two hours. No other drugs or medication as far as i know. Felt bit tired this afternoon exactly 24 hours after the infusion other than that if Wednesday is good  with no side effects piece cake. They require I get blood work done and meet with doctor prior to each new infusion same as the last Chemo treatment, And I also have CT scan scheduled for October -29 and meet with the Oncologist November-8 That will tell the story if it is working or not.   The life of a cancer patient  Appointments.  lol
  6. Like
    Robert Macaulay got a reaction from MatildaMel in Durvalumab   
    Barb
    This is intresting post today on thread i follow  be aware of side effects at any time during treatment.
    As I mentioned a while ago, I was taken off the Imfinzi due to nephritis....Creatine soared to 3.1... Kidney seriously inflamed; treated for 6 weeks with mega doses of steroids, starting at 80mg per day, down to 10 over about 6 weeks, and then finally none. I am happy to say that the kidney has recovered from its injury...but still oncologist here (CT - summer location) doesn't want me to have any more immunotherapy. The steroids have created all kinds of horrible side effect....dropped foot and now apparently either an ulcer or gastritis...(I have an endoscopy planned for Tuesday to see what's going on... at one point, the docs suspected I might be diabetic (from the roids), but that turned out not to be the case.... just pre-diabetic.... gotta watch that! 

    But in all of this.... the good news I am happy to report from the August 8 PET scan is that both lungs are clear. NED. So, the big picture, the big issue has a good story so far..... But none the less.... all my warrior buddies that are on Imfinzi.... keep an eye out for symptoms... my kidney issues had symptoms which I didn't recognize ---- upset stomach and almost complete loss of appetite. Good luck to all still on Imfinizi...I made it to 17 treatments, and clearly that has helped...that's two PET scans (over the past 6 months or so,) that have been NED. God bless you all and keep you safe.
    https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/?page=last#replies
    Bob
  7. Like
    Robert Macaulay reacted to DFK in Durvalumab   
    Good Wednesday Morning to all,
    #24 Infusion yesterday.....uneventful. Labs all normal. Usual annoying side effects present, tolerable and managed with my arsenal. My husband calls my arsenal of potions, my Felix the Cat bag.
    I had my Neck and Chest Cat Scans two weeks ago. These scan were ordered to rule out any new or existing tumors that may have impinged on my left laryngeal nerve to cause my left vocal cord paralysis. I specifically relayed to my Oncologist and ENT docs that I did NOT want to know the results until my regularly scheduled appt., which was yesterday. I really really wanted to enjoy my Thanksgiving without my "Cancer" taking front and center stage should there be progression. My last chest scan was in May, 7 months ago.
    Results:
    Chest: Original Tumor no longer seen, Nodular parenchymal disease has resolved. No gross lesions are identified and no lymphadenopathy by size criteria. 
    Neck: No masses or lesions. Vocal cord paralysis could be due to radiation therapy within the chest for patients known right lung neoplasm and subcarinal lymphadenopathy.
    In Blessed simple terms: NED. 
    Relief, joy, ecstatic gratitude does not even begin to describe how I felt sitting there in my doctors examining room, where as five minutes before, I braced myself for the worse news ever. Instead, I got the best news in this stage of the game, at the nearing end of my Durvalumab.
    I inquired as to the possibility of deferring my #25 infusion until January, with the rationale of celebrating the remainder of December without any treatments. My oncologist said YES I MAY. Tears of joy streamed down my face as I hugged this very pragmatic man. I got just a wee bit of a smile from him.
    Plan is to have my last two infusions in January, followed by a PETSCAN a month after my last infusion. I also dovetailed Cardiologist, Pulmonologist, Radiation Oncologist appts and Echocardiogram of my heart on the day of #26 Infusion. I followup with my ENT in 6 months. 
    Oncologist said my port may be scheduled for removal pending the results of the PETSCAN.
    And that my dear friends is in a nut shell, my reachable and foreseeable future, the light at the end of the tunnel, a sanguine postscript to the past 16 months.
    History: Dx August 2018 NSCLC Stg 3b. Carboplatin/premetrexed x3 concurrent with 60 Gy radiation x30 over 6 weeks. Durvalumab initiated 2 weeks after last chemo.
    Thank YOU all for your support.
    Take Care, DFK
  8. Like
    Robert Macaulay got a reaction from DFK in Durvalumab   
    Hi Everyone
    Just quick update met with both docs yesterday and this afternoon and from my CT last week radiation is off the table as he said it would do more damage than it would do good as i have had two previous doses.There is still progression from the last scan in August to the one last week.So the new treatment starting later this month will Carboplatin and Gemcitabine on separate daysevery three week for four cycles, Then as usual the Ct scan.Glad to be back (OUCH) In the treatment cycle although she did give me some strong warnings on the Gemcitabine side effects  as  blood transfusion is possible  if Anemia gets bad. 
    Treatment #3 here i come😎
    Bob
  9. Like
    Robert Macaulay reacted to Sillycat1957 in Durvalumab   
    Hi Bob,
    Glad to see your update on treatment plans. First off I am no Dr. I only share my experience with these drugs we get put on. My first line of treat was an aggressive mix of Cisplatin/Etoposide mix, the Cisplatin is also a cytoxix chemo drug, like Gemcitabine, it knocked the hell out of me as far as being fatigued and nauseous for the first week, I helped that by taking Zofran and eating my meals like 4 to 5 times a day, freakin pain in the butt yep, but at least it stopped the pukie feeling, and if I was tired oh well nite nite lol!  My daughter says Chemo gave me narcoplepsy 🤣 There was a point when my Onc was going to switch me to Carboplatin instead of Cisplatin since it's milder, my ears were starting to be affected but I wanted to stay with my original cocktail. That has since resolved on it's own Yay! Oh, and yeah, I have hand and feet tingling which I have an ongoing debate with my Oncologist is it from Chemotherpy or the Durvalumab, which BTW I have more side effects from than the concurrent chemo/radiation go figure! I wish you the best as you move forward in your new line of treatment, for me every time I sat in my chair getting an infusion of Cisplatin, knowing how powerful it was, I let my mind put it to work for my body "Saying now seek and destroy" I know I'm a  weirdo! but it got me thru, whatever gets us thru our dark places, and every radiation treatment "I sang I'm walking on Sunshine" even tho I was laying on a table lol! So as I said I wish you well, keep fighting the fight 😃
     
  10. Like
    Robert Macaulay reacted to DFK in Durvalumab   
    Thank you Bob for your update and info on your new treatment plan. I joined this forum just as you were completing your 26 infusions so I know that your road since has been unexpected, long and challenging. I wish you strength and peace and minimal controlled side effects as you navigate your new treatment plan.
    Also, I cannot echo Tom enough....I will be praying for results, praying for results, praying for results. 
    Hang tight, take care, DFK
  11. Like
    Robert Macaulay reacted to Tom Galli in Durvalumab   
    Bob,
    Ouch! I was really hoping precision radiation would do the trick.
    I've had lots of Carboplatin but never Gemcitabine.  Thankfully, you know the side effect drill.  Am praying for results.
    Stay the course.
    Tom
  12. Like
    Robert Macaulay reacted to Rower Michelle in Durvalumab   
    Hi Bob,
    Well if there’s anyone who can handle this new treatment plan, it’s you.  All the best heading into round three. We’re all going to be there for you.  Carry on. 
    Michelle
  13. Like
    Robert Macaulay got a reaction from Sillycat1957 in Durvalumab   
    Hi Everyone
    Just quick update met with both docs yesterday and this afternoon and from my CT last week radiation is off the table as he said it would do more damage than it would do good as i have had two previous doses.There is still progression from the last scan in August to the one last week.So the new treatment starting later this month will Carboplatin and Gemcitabine on separate daysevery three week for four cycles, Then as usual the Ct scan.Glad to be back (OUCH) In the treatment cycle although she did give me some strong warnings on the Gemcitabine side effects  as  blood transfusion is possible  if Anemia gets bad. 
    Treatment #3 here i come😎
    Bob
  14. Like
    Robert Macaulay reacted to DFK in Durvalumab   
    Good Wednesday to everyone
    #22 Infusion is history. Blessedly uneventful, All labs remain within normal parameters. I have been fortunate
    As I wind down with just 4 more infusions, I'd thought I give a run down of my personal experiences and side effects for the new initiates who may find themselves on Durvalumab and are learning from our forum. I've only included symptoms that were never present prior to my NSCLC and initiation of Durvalumab.
    Itchies-Broke out in a rash to my back about 6 months in. The rash quickly resolved but my itchiness to my back remains. I've had good luck in treating it with Hydrocortisone 2.5% cream and an antihistamine as needed.
    Pneumonitis- Diagnosed about 4 months in. From radiation therapy. Had to skip/postpone two doses of Durvalumab and was treated with Prednisone. Durvalumab was resumed, pneumonitis resolved and my pulmonary function tests improved and remain normal. I will be getting all 26 doses of Durvalumab.
    Generalized Aches and Pains primarily to my back and thoracic area- Very disconcerting as my chest muscles ache, my ribs ache, my lower back aches. Was told this is due to post chemo/radiation and Durvalumab. Tylenol works but if the pain really hobbles me, Motrin is my go to pain relief. Got my medical marijuana card and purchased some THC/CBD tincture......didn't work for me. Maybe I didn't titrate dosing properly but I just got really stoned and loopy and my pain was still present. 
    Joint Pain and Joint Muscle stiffness- I've really noticed an "awareness" of finger, toes, ankle and knee pain about 8 months in to my infusions. To be fair, I've had a few tumbles where I have hurt myself but the healing has been delayed and joint pain more pronounced. Again, Motrin seems to help. Had a fall from my bike couple weeks ago. I called it a soft landing since the bike just got out from under me in a mud bog. I've never bruised so extensively. Fortunately, the bruising was the worst of it and my injuries were minor. 
    Headaches- I mention this because I rarely suffered from headaches prior to Durvalumab infusions. Currently, it's a rare day if I don't have a headache for an hour or two. I do not treat with medications since it abates by itself. 
    Skin changes-  My skin bruises easier and little cuts and wounds take a lot longer to heal. My skin texture seems more fragile and my skin is definitely a lot drier. 
    Weight Gain- Been a skinny whinny all my life so a 25lb weight gain is significant. My appetite has increased so I've had to pump up my physical activities which has been challenging since...
    Faitgue- Has plagued me from chemo/radiation to today. Unrelenting presence, I do the best I can do by maintaining my physical activities and pacing my responsibilities.
    Peripheral Edema to ankles, shins and fingers- After months of watching my ankles swell, I finally obtained some Lasix to use on an as needed basis. I had my wedding ring resized prior to my diagnosis so I am absolutely positive that my fingers were swelling and it was not weight gain. Fortunately, the swelling in my fingers subsided and I haven't had and ankle swelling since I obtained my Lasix Rx. 
    I have been fortunate and have dodged the more serious side effects.
    Update on voice hoarseness and ENT appointment- Official diagnosis; Left vocal cord paralysis. Most likely caused by lung tumor impinging on my laryngeal nerve. Though, and here's the rub, usually if tumor is on the right, right vocal cord nerve affected and vice versa, if tumor on the left, left vocal cord affected. Well, I had to be different as my tumor was in my right lower lobe but my left vocal cord is paralyzed. I did have subcarinal lymph node involvement and that may explain why my left vocal cord is affected BUT, to be on the safe side, my ENT MD and Oncologist are now in discussions about either a Pet Scan or Cat Scan to rule out any progression in my left lung. 
    In the mean time, I am scheduled for surgery next week Thurs to mediate my vocal cord paralysis and hopefully, allow me to get my voice back. 
    Abdominal Ultrasound to rule out ascites- Results from yesterday pending. I will see my PCP next Tuesday and all my tests and "to do's" should come together before my surgery. 
    What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE.  My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired.
    So to all my peers on this journey, hang tough, advocate and carry on. We can do this. We are doing this.
    Take Care all, DFK
  15. Like
    Robert Macaulay reacted to Eagle13 in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
  16. Like
    Robert Macaulay reacted to Tomm in Durvalumab   
    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/
     
    I got #14 today, blood work all good ,most  fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights
    CT says I'm still NED!!
    enjoy the season
     
  17. Like
    Robert Macaulay reacted to RonH in Durvalumab   
    Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. 
    Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋).
    The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia.  Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning.
    My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. 
    Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects!
    Have a great weekend all.
  18. Like
    Robert Macaulay reacted to Kleo in Durvalumab   
    Wasn't just one tumor...it was one bigger and several smaller ones! Multiple sites.
  19. Like
    Robert Macaulay reacted to Kleo in Durvalumab   
    I had terrible muscle pains with the Durva... first in my back...then went to my arm. Sent me to the ER twice! I remember doing one PET scan where I couldn't lift that arm up...was in tears.
    I was put on the steroids for the pain.  Helped a little but not much. I kinda cringe now when I hear y'all are being given steroids. I'm sure it's just me being paranoid. ..and the docs have figured out the right dosage now. I don't want to worry or scare anyone! But steroids and durva were not right... for me.😣
    I will say that the muscle pain went away after they took me off the Durva!
  20. Like
    Robert Macaulay reacted to Sillycat1957 in Durvalumab   
    Hi all,
    I had my 4th Durvalumab infusion on Monday 10/7. The 5mg steroid seems to have helped with my niggling side effects except for my foot pain. The fatigue is unbelievable, I hope this soon improves, as this, for me anyway, seems to be the top complaint right now. But hey, I'll take it, all my labs are good. I just have to increase my daily walking to at least 30 minutes a day my oncologist said that will help with the fatigue. Well, I can try LOL! I can barely move ova here, but I can do it 💤 
    Ron wishing you a long successful run with Alecensa! 
    Fighting the fight, One day at a time 😃
    Roseann
     
  21. Like
    Robert Macaulay reacted to RonH in Durvalumab   
    For my fellow Durva Club Members…as promised, my updates:
    I received my actual biomarker test report back today. Although I was told last week that I was EML4-ALK+ on the phone, I wanted to read the report for myself.
    Yes the written report confirms what I was told over the phone, EML4-ALK Positive. There was also a "NFE2L2 p130F Missense Variant – GOF" listed (Whatever that is I'll have to do some reading on).
    There were no EGFR KRAS BRAF ROS1 RET MET or ERBB2 (HER2) variants found.
    For those that Inquired: My PD-L1 Expression is Negative.
    So the wait is on for my Specialty Drug Insurance Company/Supplier to approve and send me my Alecensa (Alectinib). Wow, a 600mg dose twice a day!  The prescription was sent to them and I am just waiting for approval and receipt. Today I had to meet with the Oncology Nurse Practitioner today for "Targeted Therapy Alectinib Training", but to be honest between here on the forums and elsewhere I didn't learn anything new. But since I had to go in for my blood work (including thyroid panel and TSH) anyway why not listen to the NP for 30 minutes.
    Best to all out there. 
  22. Like
    Robert Macaulay got a reaction from DFK in Durvalumab   
    Kleo
    Could it be one location of the tumor from different angles.?
  23. Thanks
    Robert Macaulay reacted to RonH in Durvalumab   
    Hi Michelle,
    Thanks…yes in my readings on ALK+ Mutations, I ran across your name many times, read most of your posts and saw that you were ALK+ and on Alectinib. Michelle after reading all of your posts, I was going to nominate you as the "Queen of the ALK+ Mutants".
    I spent most of Thursday evening and part of the night reading all about ALK+ mutations and the treatments. Since I had had my EBUS Biopsy Thursday morning I had a nice nap that morning curtesy of the Versed and Fentanyl. Even after I got home, I slept all afternoon so as a result I had plenty of time overnight laying awake to do my reading along with the aid of Dr. Google. I can’t wait to get started, but of course my prescription drug insurance company requires a “coverage review” before approving. Thanks also for the names and links to the various support and information groups. I have been to most and put my application in for the Alkpositive.org as well as their associated Facebook page. I plan to watch a few YouTube videos over the weekend on the subject matter. I am pleased to hear of your excellent results with Alectinib. I do kind of dread the weight gain side effect as I’m one of those people that even gained weight during the chemo and radiation treatments, and then again while on the Durvalumab. Just what I need, another aid in gaining weight! Also I am a little concerned with the effect on the liver enzymes, it was one of the first things that the Durvalumab hit me with and caused me to be temporarily taken off it for 5 weeks last year.
    The results of my EBUS biopsy yesterday surprised the Radiologist, the Med Onc, the Rad Onc as well as the Pulmonologist who performed the procedure with it coming back as malignant. With the small indication size and PET scan uptake SUV barely detectable above the background on that lymph node, all had said that thought it would be found to be benign. Of course it wasn’t, so initially I was a disappointed that I would no longer be considered for SBRT of the recurrent tumor in my lung. Fortunately my biomarker test had came back the day before and my Med Onc sounded pleased with it and also said that it was actually good news and he specifically stated that he would have me started on Alectinib. I of course did a quick internet study on it and it does sound quite promising. As I understand it, it is a 2nd generation TKI. Even the Pulmonologist said the same thing, that it should be considered a good biomarker test result. Although maybe not a cure but it at least provides a good likelihood of reasonable extension of time before further Mets, especially to the brain. Some days I can barely function with what little grey matter that God gave me to begin with, so I can’t afford to lose any brain cells! Like you say, it may likely be best to save the SRBT till later if and when I might need it. (Although quite frankly I was looking forward to frying that b*stard malignant lung tumor with radiation just to get even with it for returning!)
    To those out there that their Onc has not had biomarker testing done, if I was you I’d nudge the Onc to do so. I know that in my case they needed both a tissue sample (from a biopsy) as well as a blood sample to do the testing. Since I was having a biopsy anyway due to the probable recurrence, the Onc felt it was finally time to have the biomarker test. While I have not compared the various biomarker companies that perform these tests, my Onc used the Tempus xT test kit. There is a quick online form to fill out, and for most insurances it is “out-of-network”, however Tempus apparently will normally approve a $100.00 maximum out of pocket cost to the patients no matter what the insurance company pays or does not pay. For $100 I would have done this long ago and personally feel that it should be done with the very first biopsy confirming a cancer diagnosis. Perhaps the Tempus xT is not the most comprehensive biomarker test out there, but at such a low cost, some info is better than none at all. This is especially true for us ALK+ mutants (approximately 4% of all NSCLC cases) as it was already known that the various immunotherapy meds do not seem to work on us. I do understand that it is all part of playing the percentages, and the doctors go step by step following their normal treatment protocols that fit the majority of their patients, but I wish I hadn’t spent 10 months thinking that the Durvalumab was likely working for me when in reality, it probably wasn’t. I do believe that I have a very good Med Onc and have no regrets selecting him, but I will be suggesting to him (from a patients point of view) that he start the TSH thyroid testing as soon as starting patients on immunotherapy, as well as when his patients have a biopsy done to confirm cancer, and if it is confirmed, that they go ahead and send that sample out for biomarker testing at the very beginning, even before any chemo and/or radiation. Knowledge is Power!
    Anyway, I want to thank all the Durvalumab club members for their support, prayers and well wishes. I’ll be sticking around here and updating from time to time, but I will now also be spending time with "Michelles Mutants".😉 Best wishes to all.
    -Ron
  24. Like
    Robert Macaulay reacted to Kleo in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
  25. Like
    Robert Macaulay reacted to Roz in Durvalumab   
    But cyber knife (SBRT) doesn't work on multiple lesions right? Just if you have one mass that can be zapped?
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