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Grahame Jelley

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Posts posted by Grahame Jelley

  1. Thanks for sharing. Inspiring and aspirational story. Stage 3b and halfway through 26 projected Durvulamab course. Last scan 3 months ago and another planned but not yet scheduled . 50% shrinkage of Primary lung and nodes not remarkable upon it seems 

    blessed that side effects been minimal though recent weeks mildly intrusive muscle and small joint pains . 12 months since unexpected diagnosis and excited to have beaten the 8 month survival odds to be able to walk my daughter down isle on 22ndAugust. It seemed such a far away goal at diagnosis and yet here we are with a positive future based on all your reported successes

     

    kia kaha from New Zealand .Remain strong , positive and eyes on the future possibilities 

     

    Grahame 

  2. Hi all 

    sounds like quite a journey you are on Ron. All the best and trust all procedures will go well. 
     

    Inhad my last Durvulamab deferred due to increasing cough and some exertions breathlessness and an anxiety about COVID virus even though my cough had been well established for some time and my wife and Inessentially in isolation for 19 days as part of New Zealand lockdown. They sent me for swab anyway and a chest X-ray . Bloods all good , swab negative but Xray shows possible radiation pneumonitis in zone of radiation. Upper mediastinum and left upper lobe. Have urgent Chest CT scan Friday and hopefully they will agree to continue therapy. Have been trying to control cough with durotuss ( Pholcodine) . I have a prescription for gabapentin as next step whilst awaiting CT scan and oncologist avoiding prednisone at present

    will keep you updated 

    Grahame

     

     

  3. #4 done and dusted . Solo 3 hour trip to treatment centre and back as no support person allowed into unit. Persistent cough and mild shortness of breathe. Doc listened to chest and clear of noise. Bloods all stable and within normal parameters. Still couple months away from next CT scan. New Zealand in strict lockdown. Only essential workers allowed out homes or if have ssentialntravel like mine yesterday. Slow increase in numbers of positive cases but last 3 days been almost static . Some people not playing by isolation rules and getting a hard word from either their community or the system

     

    Thanks for everyone’s positive approach and goodwill

     

    Grahame

  4. I await to hear about my treatment on Friday. New Zealand going into effective lockdown apart from essential services . Persistent cough at present but concerned about potential conflict of prednisone use and COVID 19 illness . Await conversation with oncologist this week

    grahame

  5. Good to hear Tomm

    Interestingbfor me is now after #3 I can report that I immediately on way home feel like my allergic conjunctivitis becomes more noticeable and I get flitting and fleeting areas of itch in differing areas of body. Seems consistent and only for the immediate post infusion couple hours. Fatigue usually most noticeable Wednesday following Friday infusion. Mild dry cough and mild aches in muscle and joints when 1st mobilise in morning. Described to my wife “ like Tin man in Wizard of Aus” but am in  NZ 

    Grahame

  6. Hi Grahame here 

    #2 done and dusted on Friday. Bloods all at normal parameters . Scan prior to commencement  of #1 infusion showed 2 mm reduction in Lung primary and 5 mm reduction in R4 contra lateral node as result of radiation and chemo. No new disease. Next scan 3 months. So far”touch wood” minor side effect of mild dry cough , midday fatigue and minor aches and pains . Hope that side effect profile remains minimal. 
     

    great support on this forum. Thanks 

     

  7. 8 hours ago, DFK said:

    Happy Friday to All,

    February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕

    Questions I had for Oncologist

    1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.


    R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 

    2) What now? 
     

    R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
     

    Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.

    I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 

    Thank you everyone for your support. 

    Take care, DFK

     

    Hi DFK what wonderful news . An inspiration to us all to continue the fighting our journey. Positive approach you took has paid dividends it seems . Look forward to reporting similar success in the future 

    have a great holiday 

    Grahame

  8. Hi 

    I had minimal burn on chest and quite a reasonable darkened patch on back after radiation. This has healed quite nicely . Have had a single dose of Durvulamab and 1 week in have noticed surprisingly the milder chest burn area developing a itchy rash more so than the back. Early days for me though. Number 2 on 28 Feb. I do find energy levels are down but persisting with walking dogs, pottering on yacht trying to get it back in water and some general maintenance around our 2 acre property. 
     

    Grahame

  9. Hi DFK 

    No port as yet. Was offered if my peripheral veins don’t hold up. Flush was at initiation. They gave  me small flush before start then 20 ml line clear then 50 ml saline post infusion flush over 10 minutes through pump. Feel fine now after infusion 

    grahame

  10. Hi DFK

    12 months was my understanding from the Pacific trial. I saw oncologist Monday and was surprised with his description 24 months. We will see what eventuates. Just happy to have been granted access and that it gives me a greater chance of beating this thing. Remain positive anyway

    grahame

  11. Greetings to group. So #1 successfully authorised and infusion done and dusted. Mild flush is all I felt. CT scan yet to be formally reported but oncologist happy with what he saw and gave authority to proceed. Great news. Fortnightly schedule in place and presuming no significant side effects for two years maintenance according to my onocologist

    whoopee 

    Grahame

  12. Hope you on the mend soon DFK. As a medical practitioner I always have a flu shot and recommend all my at risk and over 65 get their shot.

    trust you will be back on your bike soon .

    lots of fluids and 1 gram Vit C a day usually helps me plus lemon honey ginger drinks plus or minus a tot of brandy. We call it “ kill or cure” remedy

    Grahame 

  13. Hi Polly 

    It appears I am in a similar position to you. Stage 3 B NSCLC. Left upper lobe lesion known for 10!years but never thought to be cancerous . Thought possible TB scar . Was present 10 years ago when I had chemo for testicular cancer . 2 years cough and slowly increasing breathlessness culminating in an acute chest pain. Thought was angina or heart attack but sailed through heart testing so repeated CT scan as nothing to see on Chest X-ray. Last scan 2014 post seminoma . PET scan showed lymph nodes left and right side so no surgery indicated. I am 61 years old living in New Zealand. I completed 30 days radiation, with two cycles of Etoposide and Cisplatin, on 13th January 2020. The course of treatment seemed more tolerable than the seminoma treatment 10 years ago. I am still in relatively good health despite all treatments apart from ongoing fatigue and breathlessness . I have tried to remain physically active and look for the positives and the humour in life. I have had 1 vitamin C infusion post radiation and take daily oral Vit C until start immunotherapy. Also taking daily mebendazole which has some evidence of benefit for cancer .  I meet with a new oncologist on Monday to start the process of Durvulamab immunotherapy. . Seems we may start our journey close together so it will be interesting to compare notes. I have a scheduled CT scan as part of the preparation for Durvulamab on Wednesday. I was not due a scan post radiation until March so this will be an interesting first look at whether there is any change from prior to radiation and chemo. 
     

    happy to swop notes on the Durvulamab list as we progress. I have found the group chat and information really useful 


    Grahame

  14. Greetings to forum.  I wondered whether any of you have had any experience or advice around the use of “ re-purposed drugs. We have a local clinic here where Inam going for Vitamin C infusions in between Radiation and chemo completion and start of Durvulamab. They also recommend use of met form in , a diabetes medication, a statin as used for cholesterol lowering and mebendazole a deworming medication.

    I am interested in the forums comments , experiences etc

    thanks Grahame

  15. Thanks Roseann

    great post on here and most helpful . Good to hear various options port versus peripheral vein 

    This was second go at Etoposide and Cisplatin  I also had 29 radiation. 
    2009 I had seminoma (testicular cancer) and had Cisplatin daily for 5 days eveyb4 weeks x 3 cycles , Etoposide and Bleomycin . I found that regime much more challenging I must say. Quite surprised how I got through the last 6 weeks with as little side effect as I did. We imagined much more significant disability 

    . now we wait and see what happens with Durvalumab

    Have a great week

    grahame

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