Tomm Posted May 18, 2019 Share Posted May 18, 2019 Charles, That's great news, you give us hope with your posts enjoy your great news... we are Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted May 18, 2019 Share Posted May 18, 2019 Thanx Barb and Tomm, will post again when I read the report and get #7, later Roz 1 Link to comment Share on other sites More sharing options...
Charles Posted May 20, 2019 Share Posted May 20, 2019 I have the results from my CT scan on friday, The radiologist said COMPARISON: PET/CT 03/04/2019. FINDINGS: Chest: The large area of masslike consolidation involving the right middle lobe and the base of the right upper lobe, which on prior study measured about 8.2 x 6.5 cm overall, currently measures about 8.0 x 3.8 cm. There is very minimal trace right pleural effusion, which has diminished in volume since the prior study. A small pericardial effusion is seen, new. The pretracheal lymph node, which on prior study measured 1.0 x 1.2 cm, currently measures about 0.8 x 0.9 cm. There is no new pathologic lymphadenopathy. The included upper abdomen is unremarkable. Bone windows show moderate degenerative changes. The radiologist doesn't seem too overly gracious with his measurements but I assure you that looking and comparing the scans from friday and the pet/ct I had in March, the differences are dramatic and almost unbelieveable, hooray! as can be seen, there is a negative, but compared to all the amazing positives (Imfinzi shrinkage) I am thanking the Lord above, I will definately take it fore sure. The attachments I have included is what I had in August of 2018 and what I have now, and positive signs the Durvaumab is working Tom Galli and Roz 2 Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 20, 2019 Share Posted May 20, 2019 Wow Charles, that is really amazing! What does the onc think? Any changes to the treatment plan? Keep fighting! Link to comment Share on other sites More sharing options...
Charles Posted May 20, 2019 Share Posted May 20, 2019 Michelle I get to see him for #7 tomorrow but up to this point he says I'm doing well and keep doing what I'm doing, when I do get to see him. No changes to the plan as of yet but I am going to discuss some "things" with him or his assistant tomorrow. hopefully it doesn't take much more treatment for this tumor to lose all it's shape altogether, the May 17th image above is the absolute largest that is left of it from any angle or series of angles. I do want it gone though so will probably have to wait and see what next month's pet scan has to show, so until then my eyelids and knuckles will continue to drag the ground and I will keep doing the Durvalumab shuffle wherever I go, thanx Michelle......Charles Tom Galli, Roz and Rower Michelle 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 20, 2019 Share Posted May 20, 2019 Great Charles. I’m happy to see it working for you. Gives us all hope. How often do you get scanned ? I’m on the every 3 months schedule so I’m not due until July. Link to comment Share on other sites More sharing options...
Charles Posted May 21, 2019 Share Posted May 21, 2019 Barb, Pet/ct scans I guess every 90 days also, last one was in march so I believe next month is the next one of those. Tuesday was a lower radiation ct with contrast and I don't really know how often these are scheduled unless they just give those as they think they are necessesary or what. I have never seen anyone offer any actual positive results (not saying they haven't or don't) about durvalumab per se, only all these crazy side effects to include the ones I am having to the point of I don't know which ones are me and which ones are the durva. I have proof positive in JPEG images that it is actually working from March to May which would be the durva working but this is Robert McCauley's thread and I din't want to hijack it by "comparing colonoscopies" (so to speak) by posting a bunch of pictures of my innards, seeings how this is a durvalumab blog though, I did feel it critically imperative for someone to say or show some kind of positive evidence that the drug is really working for someone to shrink the tumors, and I am happy to be able to be the one to do that, because up until today, hope is all I had in a river of side effects and questions. Now on to the next battle in this war we are fighting! I will offer hope to anyone I can when possible..... Link to comment Share on other sites More sharing options...
Tom Galli Posted May 21, 2019 Share Posted May 21, 2019 Great news Charles! Stay the course. Tom. Charles 1 Link to comment Share on other sites More sharing options...
Tomm Posted May 21, 2019 Share Posted May 21, 2019 19 hours ago, Charles said: I did feel it critically imperative for someone to say or show some kind of positive evidence that the drug is really working for someone to shrink the tumors Charles, It's really great to hear your great news and it let's us know it does work. What is your PdL-1 expression % ? It sure is nice that there is a treatment after chemo/radiation for us. Charles 1 Link to comment Share on other sites More sharing options...
Steff Posted May 21, 2019 Share Posted May 21, 2019 Great news Charles! Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted May 22, 2019 Share Posted May 22, 2019 Tomm, Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7 He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME! THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out... Jane Lee, Sillycat1957 and Curt 3 Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 26, 2019 Share Posted May 26, 2019 Run like a butterfly sting like a 🐝! That’s awesome! Link to comment Share on other sites More sharing options...
Barb1260 Posted May 26, 2019 Share Posted May 26, 2019 Hey Charles. I’m having the itchy swollen eyes issue. Hopefully it’s my allergies, of course it may be a side effect. Another person I work with is having the same symptoms from her allergies-she’s not a patient. Wondering what you are doing for it and what your doc says about it. Link to comment Share on other sites More sharing options...
Charles Posted May 27, 2019 Share Posted May 27, 2019 Barb, I reported the eye thing to my primary care dr. and my onc. Primary gave me some Zyrtec (otc) to see if it was allergies but that didn't help, I've never had allergies before. after several weeks of having the swollen eyelid thing Onc said he thinks it is Durva related for me so he put me on 10 mg. Prednisone daily without witholding treatments. I set an eye appointment to be looked at for signs of abnormalities or problems inside the eye and am waiting to go to that. I would make an appt. with an eye doctor to see if there are underlying problems though because eye problems are said to be rare with Durva but can be serious. Link to comment Share on other sites More sharing options...
Tomm Posted May 30, 2019 Share Posted May 30, 2019 I hope your eyes improve, I live in the grass seed capital of the world and sometimes I can see yellow smoke float by (hay fever) so far I'm OK. Duva infusion #4 .. just some fatigue, all blood work good. Hope you all are doing well enjoy the season Rower Michelle 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 30, 2019 Share Posted May 30, 2019 Had #3 today. I’ll be tired for the weekend. Gets me out of housework 😀. All blood work good here also. Doc thinks my eyes are part of the reaction to the inhaler on top of my normal allergies and it’s been much better. Keep on fighting Rower Michelle and Tom Galli 2 Link to comment Share on other sites More sharing options...
Tomm Posted June 2, 2019 Share Posted June 2, 2019 I found this link I want to share. This is Updated Pacific Study Data IMFINZI® (durvalumab) is the only immunotherapy to demonstrate overall survival at three years in unresectable, Stage III non-small cell lung cancer https://www.astrazeneca-us.com/content/az-us/media/press-releases/2019/imfinzi-durvalumab-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer-06012019.html These are a few of the natural supplements I take that are anti-inflammatory. Fish oil caps turmeric extract called curcumin cgf chlorella CBD caps ..I don't take this the day before or for 2 days after infusion Propolis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4345176/ berberine magnesium melatonin Barb1260 and Rower Michelle 1 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 3, 2019 Share Posted June 3, 2019 Thanks Tomm. Interesting read and positive news. Link to comment Share on other sites More sharing options...
Barb1260 Posted June 3, 2019 Share Posted June 3, 2019 Thanks Tomm. Interesting read and positive news. Why do you not take CBD before and after? Link to comment Share on other sites More sharing options...
Tomm Posted June 3, 2019 Share Posted June 3, 2019 this link https://www.oncologynurseadvisor.com/home/cancer-types/general-oncology/cannabis-reduces-response-rate-to-immunotherapy-for-cancer/ I believe it helps to keep side effects away and cures Barb1260 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 3, 2019 Share Posted June 3, 2019 Wondering if not taking it those days is enough as the Durvalumab stays around for more than a few days after. Or so I read. Link to comment Share on other sites More sharing options...
Tomm Posted June 4, 2019 Share Posted June 4, 2019 Barb, I wonder too, the trial was not with durvlumab, it was a small test and it says MAY so I make a personal choice to use it because I really believe it did help me become Ned but I wait a few days after infusion. Administering cannabis to patients with cancer undergoing immunotherapy may lower the response rate to therapy without having an effect on progression-free survival (PFS) or overall survival (OS), Link to comment Share on other sites More sharing options...
Tomm Posted June 14, 2019 Share Posted June 14, 2019 infusion #5 done.. got some fatigue but my Thyroid is off the chart. I am not taking any thyroid medicine at this time. I was taking 60 units of armor but was told to stop Thyroid stimulating hormone measurement (TSH)29.633 uIU/mL0.358 || 3.74 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 14, 2019 Share Posted June 14, 2019 Hi Tomm-#4 done yesterday. Little tired but slept awful last night. I can never pinpoint my fatigue to this unless it hits me over the head in the middle of the day for no apparent reason. All blood tests were good enough for the doc, didn't get my thyroid results in my paperwork for some reason but they'll post it in my chart on line in a few days. Are you gaining weight? Seems every time I step on the scale at the onc's, I gain a pound. But better than losing weight for no apparent reason. And I still have this itchy, sometimes swollen and red eye issue going on, can't pinpoint it to the Durva either, it comes and goes. Hope you have a good weekend. Link to comment Share on other sites More sharing options...
Tomm Posted June 14, 2019 Share Posted June 14, 2019 Hi Barb, not gaining weight but losing 1+ lb. within a week ... not very hungry for a few days after. When I lose weight I have some non-dairy ice cream, more ghee and get the weight back. Sleep with difficult for me too. enjoy your weekend Link to comment Share on other sites More sharing options...
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