Tomm Posted July 19, 2019 Share Posted July 19, 2019 Barb: cancer free weight gain makes sense to me with your progress, sound really good. Charles: way to go in the right direction from very large to a walnut. I just got my CT results ... I'm still NED! Infusion #7 today only side effect is fatigue. keep the good news coming fellow travelers Charles, Tom Galli and RonH 3 Link to comment Share on other sites More sharing options...
Charles Posted July 19, 2019 Share Posted July 19, 2019 Thanks Barb and Tomm, happy to hear the good news but limited as to how much celebration I can do for my good news due to Hypothyroidism. As of July 17th my TSH was 54 but actually having a little more energy and strength because of the hormone replacement pills so it's all good there, keep up the great work everyone! Link to comment Share on other sites More sharing options...
Barb1260 Posted July 19, 2019 Share Posted July 19, 2019 Tomm-great news. Charles-hoping your TSH gets better soon. Charles 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 19, 2019 Share Posted July 19, 2019 HOORAY for you Tomm!!! You gave that cancer an eviction notice! YAHOOEE! All that hard work paid off!!! Here’s to your Hippie Protocol!!!!! Tomm 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted July 19, 2019 Share Posted July 19, 2019 Tomm, A NED scan indeed. How great is that? Stay the course. Tom Tomm 1 Link to comment Share on other sites More sharing options...
Tomm Posted July 19, 2019 Share Posted July 19, 2019 Thanks folks... I'm hoping as Duva and other new meds put more people into NED we see OS and PFS extended to lifetime PFS for us all. The numbers say there is an 85% chance that lung cancer will come back within 2 years after NED, I missed 2 years by 2 weeks. Then 1 year 2 months... My numbers are based on when after treatment was Wait and Watch, now many new things like Duva. I don't want a return next year. I can see by the progress reported here that this is working for many and you will soon be part of PFS for a lifetime.... Happy thoughts Robert Macaulay, Tom Galli and Rower Michelle 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted July 25, 2019 Share Posted July 25, 2019 Woohoo. Brain MRI came back clean. That with the PET results a few weeks ago is making me believe this Durva stuff is doing what it’s supposed to. Only 19 more to go!!! Rower Michelle, PaulaC, Robert Macaulay and 1 other 4 Link to comment Share on other sites More sharing options...
BridgetO Posted July 25, 2019 Share Posted July 25, 2019 Woo hoo for clear brain MRI! Go Barb and durva! Barb1260 1 Link to comment Share on other sites More sharing options...
Tomm Posted July 26, 2019 Share Posted July 26, 2019 Barb, Great news!! Thanks for letting us know.. I think your infusion was today, I hope it went your way. How is your fatigue level, staying the same, getting more or less? Any new side effects? other folks .Please post your scan results stay as cool as you can Link to comment Share on other sites More sharing options...
Barb1260 Posted July 26, 2019 Share Posted July 26, 2019 Hey Tomm. Yup #7 today. Not really having any side effects. Can’t even say I’m fatigued. I feel more tired from the Benadryl they give me before the Imfinzi than any other time in the 2 weeks between. Other than that I feel normal. How are you doing? Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Tomm Posted July 26, 2019 Share Posted July 26, 2019 Hi Barb, I went to my outdoor event in the woods and after walking on trails for 1 1/2 miles I'm still recovering from the fatigue and better every day. I have an energy bank to use per day and I took an advance last week, still paying back. I feel fine and my human host will recover soon. It's really good to hear you have no side effects as I know you were concerned before you started taking Durv.. Barb1260 and Robert Macaulay 2 Link to comment Share on other sites More sharing options...
Charles Posted July 26, 2019 Share Posted July 26, 2019 all good in my camp scans, mri's, radiology, reports, and eye exam all good. supercharging the thyroid appears to be working slow but sure as the body seems to be going through a positive metamorphosis. NED is all our goals but I am Waiting to see who will be the first to achieve NED as a result OF the Imfinzi. Lots of positive results on this site so maybe soon.... Barb1260 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 26, 2019 Share Posted July 26, 2019 Such great news to see The Durva Club kicking butt! Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 26, 2019 Author Share Posted July 26, 2019 Some recent interesting news going forward Imfinzi is the only immunotherapy to demonstrate overall survival at three years in unresectable Stage III non-small cell lung cancer. Data presented at ASCO 2019 showed 57% of patients alive at three years vs. 43.5% on placebo PUBLISHED 2 June 2019 https://www.astrazeneca.com/media-centre/press-releases/2019/imfinzi-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer02062019.html Barb1260, Rower Michelle and Tomm 3 Link to comment Share on other sites More sharing options...
Tomm Posted August 1, 2019 Share Posted August 1, 2019 I got infusion #8 today with lots of fatigue within an hour. Blood work not good and almost didn't get this one. Creatinine (kidney) went from 1.3 to 1.5 and the treatment level says no more than 1.3. Glucose went from 139 to 188. TSH went 29 to 139. I start Levothyroxine 75 tomorrow ..wonder why I'm fatigued, not. everyone is different and this just me and not to be expected for anyone else. enjoy summer ... Charles and Barb1260 1 1 Link to comment Share on other sites More sharing options...
RonH Posted August 1, 2019 Share Posted August 1, 2019 My Experience: Last year back in May/June of 2018 at the age of 61, I was diagnosed with Stage 3A NSCLC after a low dose CT scan indicated possible tumors. A full CT was next along with a Lung Needle Biopsy followed a few weeks later with a endobronchial ultrasound (EBUS) with needle aspiration that was used to confirm the diagnosis. I also had additional CT Scans, a Pet Scan and a Brain MRI to confirm the staging. In mid-June 2018, I started concurrent radiation and chemo treatments for 7 weeks (radiation daily and chemo once per week). Then there was a short month long break to recover some, then followed by of a higher dose consolidation chemotherapy weekly over the next 5 weeks. During this second chemotherapy is when my hair said enough is enough, we’re out of here and I lost every single hair on my body. I had always wondered what I would look like bald but was disappointed to discover that I would have an uncanny striking resemblance to Uncle Fester of the old Adams Family TV show. Although I had some other minor side effects from the radiation and chemo, I really didn’t experience anything really significant and little or no nausea. The chemo did significantly lower my white blood cell count and I was advised to avoid crowds as much as possible. My ONC said that I handled the chemo better than 95% of his patients. Post chemo radiation CT’s indicated good shrinkage of all tumors and no new ones. Of course I was also developing radiation fibrosis so it is difficult to get good measurements due to all of the scar tissue from the radiation. I then had another 4 week break and then at the beginning of November 2018, I was started on Durvalumab as my cancer had not progressed after the chemo-radiation therapy. The initial side effect I got was a minor rash and itching everywhere, but not to the degree that concerned my ONC. However after the second infusion, my liver function test results (AST & ALT) went up significantly, and I was pulled off of immunotherapy for the entire month of December. By the beginning of January 2019, my liver function tests returned to normal and my Durvlumab treatments resumed. This time, it had no impact on my liver and those blood tests remained and still are well within normal levels. Several CT scans over the year continued to show shrinkage with no new developing tumors. I also no longer get a rash, however I still itch some, especially for a few days after the infusion. Also I will be fatigued for about a week or so but was still able to continue working full time (office type work). While I do not experience anything in a significant amount, I do have muscle aches, some chest congestion, occasionally mild constipation, and of course the itching. After Infusion #12, they started checking my Thyroid TSH levels as part of my blood tests every other week before my infusion. As it turns out, my thyroid had virtually shut down and I now have Hypothyroidism, likely a side effect of the Durvalumab. This helps explain why I was getting more and more fatigued every week, plus I was gaining a lot of weight. Also about 6 weeks ago I developed a dry mouth that the ONC also contributes to the Durvalumab treatments. I have now been started on a thyroid hormone replacement pill every day and after almost 6 or 7 weeks now, I can feel my energy levels significantly increasing. I won’t be running any marathons, but of course I didn’t do that before my diagnosis either. The ONC says he is working my thyroid medicine dosage up to the proper level over the next few months. Unfortunately I still have the dry mouth and have now lost being able to taste anything I eat but am very sensitive to anything spicy in my mouth. I can only barely sense sweet and salty, but no real taste remains. My hair did manage to grow back this Spring, but now kind of curly and thicker than before. My entire life I had straight hair so this is a new look for me, and a whole lot better than the Uncle Fester look I had last winter. This past Monday (7/29/2019) I received my 17th Durvalumab infusion and hope to be able to get all 24 approved treatments in. My ONC says that he and the others in his practice have had very few patients be able to receive the full course of treatments, with most being pulled off before half way due to the side effects, so I consider myself fortunate to make it this far. Here in another 3 weeks, I have another set of CT scans and another Brain MRI scheduled. I am really hoping for good news. Anyway, I just wanted to share my story and let those out there just beginning their journey into this, that there is hope. If all goes well, I will complete my Durvalumab treatments in late October. I did ask my ONC what if anything is next and never received a very good answer other than we’ll see how things are at that time. I kind of got the impression that as long as the CTs / MRI indicated no progression, that we move on to a “wait and see” period. Anyone out there have any thoughts or experience with this? Thanks, Ron Rower Michelle, Charles, Robert Macaulay and 1 other 4 Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 1, 2019 Share Posted August 1, 2019 Yowza Tomm. Hoping those thyroid meds kick in soon. Is the doc considering Metforim? There’s emerging research about its anti cancer properties as well as effectiveness in controlling blood sugar. Hang in there my friend! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted August 1, 2019 Author Share Posted August 1, 2019 So very important to view your blood work, To see the changes this drug is making on your system.Creatine i had to alter my diet, Thyroid went ballastic, t3. t4 checked ect ect.My Hemoglobin is way down again, But one more to go and bring out the iron pills and the antibiotics. and maybe little blue pill for good measure, lol Last week i had five items out of range but not enough to halt. It is not a walk in the park and i will be glad to take a break after August-14 Bob Tomm and Charles 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted August 2, 2019 Share Posted August 2, 2019 Sorry this is so difficult for you Tomm. Hopefully it will all straighten out and you can continue until the end. Rower Michelle and Charles 2 Link to comment Share on other sites More sharing options...
Charles Posted August 2, 2019 Share Posted August 2, 2019 deleted by poster redundent Rower Michelle 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted August 2, 2019 Author Share Posted August 2, 2019 RonH Great to here things are settling down for you, and to be still working that is feat in itself, The standard procedure calls for 26 infusions to completion. Yes there is a high attrition rate with this drug and i was aware prior to starting last August, also i said to the doctor last week i would do it all over without hesitation despite the side effects, As long as this drug stops progression and i am stable and scans are good it can stay in my system for ever and ever.This is now seventeen months of treatments /appointments and i will use your quote I kind of got the impression that as long as the CTs / MRI indicated no progression, that we move on to a “wait and see” period. That has been my doctors statement from the beginning and i expect the same reply come Sept-7 when she gets my Ct results. Your on the home stretch to #26 Bob Rower Michelle 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted August 2, 2019 Share Posted August 2, 2019 Ron, Good to have you here. I was also plagued with a dry mouth during my chemo. I lived on Halls citrus drops. I also found using a couple of pumps of Chloraseptic sore throat spray in my mouth before bed dramatically reduced the dry morning mouth problem. Also, try peppermint to wake up your taste buds. To see if it works, put a drop of peppermint extract on your tongue. Stay The Course. Tom Tomm 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted August 2, 2019 Author Share Posted August 2, 2019 Tomm I just checked my blood work chart and prior to infusion #8 my creatinine shot up to 1.2. Strange, Then it slowly went down i am still high around 1,1 and have to watch my protein intake amongst other things .Couple of other things to watch are your blood counts WBC and RBC Also Hemoglobin if low can cause Anemia which i have right now. Every two weeks it was always something different either going up or down. Bob Link to comment Share on other sites More sharing options...
Tomm Posted August 2, 2019 Share Posted August 2, 2019 Hi RonH .. thanks very much for sharing your journey with us. If you don't mind what was your TSH? and what is your PDL-1 expression? Michelle .. I'll ask about Metforim, thanks for the suggestion. Barb . so far the only effect is more fatigue, this is so new that it has not had time to mess with me and I start on TSH meds tomorrow to fix things. I'm not stopping unless the Doc says to stop. Hope you keep doing well. Charles.. interesting that you got hyperthyroidism (numbers?) and I got hypothyroidism. Robert .. my Hemoglobin,WBC,RBC,HCT,ALT.AST have all been in normal range and everything I didn't mention. Guts are fine . Thanks for checking into your past blood work and sharing. the journey continues for the Durvas . I know more folks are taking this ... please share, it will help us all, thanks Link to comment Share on other sites More sharing options...
Charles Posted August 2, 2019 Share Posted August 2, 2019 Tomm, I'm not hyper but hypo sorry my bad. Link to comment Share on other sites More sharing options...
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