Grahame Jelley
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Posts posted by Grahame Jelley
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New article just out on Pacific trial
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Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”.
- Barb1260, Tomm, Sillycat1957 and 1 other
- 4
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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
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#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
- Rower Michelle, Tom Galli and Tomm
- 3
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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
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Thanks DFK
your optimism is contagious. Let’s just replace Covid19 with your contagion
Grahame
- Rower Michelle and DFK
- 2
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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
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Thanks DFK
you are so eloquent. Had you considered a career as an author?
grahame
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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
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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
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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
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Went for a walk with dogs late afternoon after infusion this morning. Definite muscle ache and more tired than usual with this level of effort. See what tomorrow brings!!
grahame
- Rower Michelle and DFK
- 2
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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
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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
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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
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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
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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
- Sillycat1957 and DFK
- 2
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Hi everyone
I have had little in terms of information from oncologist about regime for Survulamab and presume at next appointment I will get some further information . Would appreciate your understanding of the typical regime and routine . It appears fortnightly infusions over 42 weeks ? from Opals post pre infusion bloods each time . I guess around an hour per infusion. Any other monitoring ?
thanks
Grahame
Durvalumab
in IMMUNOTHERAPY
Posted
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