Charles
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Posts posted by Charles
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Tomm,
I don't know but good luck with that one.
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Hey Robert,
here is a link published just in march and it is from canada
https://cadth.ca/imfinzi-non-small-cell-lung-cancer-details
It is about the most up to date info on Durvalumab I have found, once there , click on the pdf at the top in the right column
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Tomm,
Okay , thanx, and welcome
Rower Michelle,
Most elloquently put and very true, Kudos!
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Tomm,
I haven't heard or read of anyone here on imfinzi as of yet being NED as the drug was just FDA approved in Feb of 2018 for stage 3 so I would guess it is still in it's "infancy" I, like you, have a million questions myself about it as I am new to it also. I have come to the seeming reality that there just isn't tons of folks to ask about their "successful Imfinzi journeys" as of yet. All I can say at this point is I am very much in hopes and prayers that the antibodies in the stuff prevent the pd-1 and the pd-l1 from joining together and my T-cells can destroy the tumor and all residuals therefrom, as they are supposed to do. As far as reapplying the "brakes" on the t-cells when it comes time is just another one of those zillions of questions that seem to be building in a large repertoire within myself. In Jan, when I felt I needed to go to the ER about "possible serious side effects" (pain in the liver area) The ER staff, to include the Dr who treated me, was very hungry for technical info on Imfinzi, what it really is, and the possible side effects and how to treat them, so I interpreted this at the time as not enough is really known in the medical world either, The research that I have done says that only now medical institutions are beginning to educate their staff about "our reality" and we (Durvy's) are on a growing list of people who I suppose would be classified as "pioneers" on Durvalumab. All they still have to go by it seems is the Pacific trials results in which the FDA's approval was given due to those. Tomm, it sounds like your regimen is second to none though having killed several tumors with CBD, Cannabis and vitamin C which fscinates me and maybe in the future I could pick your brain about those if I can, Thanx, Charles
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Tomm
3b here, chemo and radiation knocked a lot of the stuffing out of my tumor as it has shrunk considerably but cannot claim remission at this time. As of 1st initial CT and PET's, no new metastasis with uptake 19 less than first PET. Have had 5th infusion of Durva today and so far, no new side effects. Side effects so far have been fatigue, vision a little blurry at times (very little) and minor twinges here and there with inflammation and cough that comes and goes with the help of Ibuprofen and generic mucinex. I did have to visit the E.R. and take prednisone a week after the 2nd infusion because of a nagging pain in the liver area and under the right arm but turned out to be inflammation so the prednisone took care of it without having to take it enough to taper off. Very glad to hear your remission story and pray I will be able to stake my claim in that department very soon, and no hair loss here either.
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Robert,
I use generic Mucinex, have been since before the diagnosis, for COPD.
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Robert,
funny you should mention Ibuprophen, I just happen to have a bottle not 6 inches from my left hand here by my computer, yeah it works pretty good , thanks for the link, Charles
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Hey Robert, glad to hear back from you. just finished number 3 on Tues. I had a liver scare so went to E.R. and it turned out to be inflammation so I didn't take the third infusion due to prednisone but got it a week later. I'm like you, feel better now than any point in treatments. Coughing comes and goes but can do more physically, inflammation is worse as the day goes on but not near as bad as it was, starting to have more "good lung" days than "bad lung" days and hoping no more side effects except inflammation.
Charles
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Hey Robert, how are you doing on the Durvalumab?
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oh, okay Lexiecat, thanks for that .
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Rower Michelle, what is NED?
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Robert, I am really anxious to find out if I get a goody basket out of this although an Imfinzi Durvalumab t-shirt in my size would suffice nicely, what do you do if you find dicrepencies on your lab levels?
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Bridget, I have thought about a port but have found ways less invasive to make veins pop up on the hand like drinking more water the day of and before infusions just simply forgot to this time, thanx. To Eagle, Robert, and Rower, thanks for replying to my long winded opener. Eagle, I sure hope my pdl-1 is positive, Robert, I get my labs before treatments but if key readings are too low my Dr. will cut back on the amount or not administer treatment (God forbid)at least that's what he did during chemo. Rower Michelle, Thanks for the info. and I have to reset my password everytime I come on here and that is also a pain in the gluetius maximus.
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Just sat for my first infusion of Imfinzi on Jan 22nd and all seems well here on the 25th, worst part was the stick to the hand (darned veins) No side effects that I can blame exclusively on the immuno drug (knock on wood!) When I began this whirlwind I vowed I would not face it blindly, I vowed to myself that I would do everything in my power and resources to combat and conquer, if at all possible, and maintain a positive attitude with the help of God. I ask my self, "is there something I can do to help imfinzi to work better or at least keep my cancer from metasisizing to another area?" Then I'll research that question like crazy on the internet, then weigh up the findings with an open mind (good with bad) then make a decision to act or not to act on it. My findings on Durvalumab tells me it is less than a year old for NSCLC stage 3 and it is a pdl-1 blocker and has been researched in the pacific trials with some success- I found this fact utterly wonderful news since it is a drug just for our "condition" Then I found "it doesn't work for everyone" and claimed side effects were scary to me. At this time I know I won't be finding a lot of great success stories and "miraculous cure" claims for a while, so the "scientist" in me decided to look into "things" anyways. In 2015 a complete scientific study was done by H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida USA Department of Cancer Imaging and Metabolism, H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida USA3Department of Pharmacology and Toxicology, Faculty of Pharmacy, Mansoura University, Egypt , on then existing immunotherapies to include pd-1 blockers , WHAT? PD-1 BLOCKERS? is this the same PD-1 that durvalumab's PDL-1 joins with to cause T-cells to ignore cancer tumors and not destroy them? YES IT IS! and here is the website www.ncbi.nlm.nih.gov/pmc/articles/PMC4829106/ There is no research available like this on Imfinzi that I know of except the pacific trials which only gave results of administration of the drug as opposed to placebo, and percentage of success and failure overall. The rest of this is my theory due to their research: The website address I gave earlier, which is scientific research done on immunotherapy in vitro and in vivo (petrie dish and mice) that claims PH levels of cancer tumors are key to immunotherapy's level of success and the mechanisms thereof. Since Imfinzi Durvalumab (pdl-1 inhibitor or blocker) was not available to be tested on this test, Pd-1 blockers (known now as Keytruda) was. Pd-1 and pdl-1 work hand in hand together to fool T-cells into not killing tumors and the above research has stated that t-cells don't activate in an acidic environment which tumors are (so they claim) So what this means to me is even if the pd-1 and pdl-1 molecules are being blocked from fooling the t-cells, if the t-cells don't activate due to acidic conditions , then shouldn't they try to adjust ph level? THEY DID! AND IT WORKED! They called it "buffer therapy" and I am doing this at home to try and make the immuno work for me at a safe and maximum rate with hopefully, little to no side effects. So I have all my little supplies together to include ph test strips and the vehicle to "buffer' my tumor's ph , and my elixir formula made up that I take and have been doing this since chemo and radiation which also was shown to benefit from ph "buffering" and so far no bad news. I just put this out there because in the least it makes for fascinating reading and I am like Johnny 5 on the subject- I-N-P-U-T! Thanx
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My name is Charles, I had been diagnosed with stage 3b NSCLC and a brochoscopy w/biopsy confirmed. A pet scan also confirmed a tumor 13 cm x 8cm in my right lung with suspected partial lung collapse. went through 35 radiation treatments and 10 chemo infusions with taxol and carboplatin with relatively no side effects until after treatments were through. lungs continue to make excess mucous and inflammation 1 month and 8 days after treatment stopped. had initial ct scan after treatment and scan showed tumor at least 50% smaller (7cm) but they don't know exactly how much smaller because a lot of what is seen on the scan is suspected to be inflammation and/or dying tissue.so shrinkage could be exceptionally more than 50%. continued to cough up and expel less and less matter and pinkish to red mucus until today. coughing continues to improve slowly and lungs appear to feel like they are healing. I am scheduled to start immunotherapy (durvalumab) tomorrow Jan. 22 and I am very anxious and nervous. The difference between my whirlwind with cancer and others on immunotherapy blogs, mainly durvalumab blogs seems to be that I am trying to be more proactive in my plan than others seem to be in theirs, I could be wrong though. I had to disqualify my first radiation doctor after the consultation because he did not fit the criteria in my treatment expectations. He seemed to be too complacent and non-chalant about my case without even seeing my scans and seemed to want to put the radiation part of my treatment off until after chemo, which research has shown that chemo and radiation concurrently killed tumors better than consecutive treatments in my type of cancer, boy I'm glad I did my research on that one because that part has been a success as far as tumor shrinkage goes. Also, since I am a part of my own treatment, anything I can do to help the treatments, I feel I am doing, like trying to eat more healthy foods like fresh vegetables as close to raw as I can stand them and maintaining my bodily ph levels at 8.0 to 8.5 (due to my research and beliefs) with the help of ph test strips, during chemo and radiation. and will continue to keep ph from 7.5 to 8.0 during immuno. all with the blessings of my onc dr., primary care provider, and radiation dr. So far, by indications and research all has gone very well. I haven't read anywhere that a 13x8 cm tumor was shrunk so much, so I have to believe that my contributions to the medical treatments have worked hand in hand. And one of the biggest factors of it all is GOD! I have prayed for God's help and presence in all this and know at the time of his works that he is here with me and the direct cause of the miracle at hand. I consider my decision to help with my treatments a part of his miracles. I am nervously awaiting the time for my initial pet scan after treatments and hope that my immuno goes well. I know that durvalumab is not given with curative intents but in my eyes it cannot hurt but my goal is curative. I this comment is long winded, which I hope I will be when this whirlwind subsides and I hope this is the correct place to air my comments as I have never had to comment in this way before. I will try to monitor and post as the immuno and pet scans progress and answer ones who reply if any, Thanxm Charlie..
Durvalumab
in IMMUNOTHERAPY
Posted
As I sit here in front of my inside portal to the outside world with eyelids swollen, looking like I just went at least three rounds with Apollo Creed two words come to mind: "Adrian! Adrian!" A little attempted humor there.