Charles Posted October 24, 2019 Share Posted October 24, 2019 Barb I see your point and totally agree as I have had to take a break myself a time or two off this mess and don't regret it for one moment Tom Galli, DFK and Barb1260 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted October 25, 2019 Share Posted October 25, 2019 Well the pulmonologist visit went better than expected. Took another X-ray (starting to worry about all this radiation) and showed nothing,no fluid, no Pneumonitis so the consensus is pleuritis for sure. No prednisone-both the onc and the pulmonologist agreed that at this stage it’s better to let it run its course and just take over the counter anti inflammatory drugs and patches. Said the prednisone will stop the Imfinzi in it’s tracks. I had a bunch of PFTs and said the results are the best they have ever been. Said if I wasn’t doing so well he would consider steroids but he ain’t screwing around with it. Got to go back 4 days after the next infusion to see if it made my symptoms worse. Hopefully with skipping a dose it will all calm down. Did learn that there are no nerves in your lungs, they are all in the Pleura. One good thing, might have to cancel the gross GI tests at the end of November. No anaesthesia with pleurisy-oh darn I was looking forward to cameras in all my orifices 😬 Sillycat1957, RonH, DFK and 2 others 5 Link to comment Share on other sites More sharing options...
Tomm Posted October 25, 2019 Share Posted October 25, 2019 Barb ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat .. you may find this interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/ I got #14 today, blood work all good ,most fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights CT says I'm still NED!! enjoy the season PaulaC, DFK, Rower Michelle and 6 others 9 Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 25, 2019 Share Posted October 25, 2019 That’s such wonderful news Tomm! DFK 1 Link to comment Share on other sites More sharing options...
RonH Posted October 26, 2019 Share Posted October 26, 2019 Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋). The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia. Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning. My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects! Have a great weekend all. Robert Macaulay, DFK, Sillycat1957 and 1 other 4 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted October 26, 2019 Share Posted October 26, 2019 6 hours ago, RonH said: Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋). The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia. Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning. My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects! Have a great weekend all. Hi Ron. I remember Elizabeth well lol! I hope the side effects are just your body adjusting to the new medicine. But there are other drugs for ALK+ people too, that may be better for you right? Good luck and God Bless! Keep kickin' cancers *ss 😃 and have a nice weekend RonH and DFK 1 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 26, 2019 Share Posted October 26, 2019 Hi Ron- Yep, all of those side effects! The only thing I can say is that it’s a worthwhile trade off For some reason Alectinib is dosed at the highest “tolerable” in a one size fits all category. Approximately 3/4 of patients get stepped down to a lower dose which decreases most adverse effects. Hang in there through the “fine tuning process” with all those upcoming labs! Michelle Sillycat1957, Charles, RonH and 1 other 3 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted October 26, 2019 Share Posted October 26, 2019 Hi Ron. Lol, I’m sorry to say I remember that show. Sorry to read about your side effects. Hopefully they are temporary and/or controllable. It certainly is crazy how some people have no side effects or very little and others get more. Hang in there-we are all fighters and we are all going to win!! Charles, DFK, Sillycat1957 and 1 other 3 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 28, 2019 Share Posted October 28, 2019 Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event. I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks. “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience. He wasn’t a positive see the bright side of life type of Doctor. Shame on him!! Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s). It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome. Too much of “good thing” is bad for you. those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva. In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. You guys inspire me! Michelle Sillycat1957, Barb1260, Opal and 7 others 9 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted October 28, 2019 Share Posted October 28, 2019 Thanks Michelle!!! You are an inspiration yourself. DFK 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 28, 2019 Share Posted October 28, 2019 Barb I was thinking about you during this presentation- I guess that most boardwalk foods are not microbiome friendly. 😂 DFK and Barb1260 2 Link to comment Share on other sites More sharing options...
Opal Posted October 28, 2019 Share Posted October 28, 2019 I 2nd that Barb! She is a great support and inspiration!! Barb1260, Rower Michelle and DFK 3 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted October 28, 2019 Share Posted October 28, 2019 Michelle, Thank you for attending and being a "lurker" lol Bringing back that info to share with us Durva people is awesome news. I hope you had chance to let the Dr see your positive light 😃 I can't wait to read the outcome of the study! I read an article that was sent to me back in August, before I started Durvalumab about immunotherapy and the gut microbiome and over the counter probiotics. Your right about the good being bad some things just don't make sense sometimes I reckon. Thanks again for the update, have a good night 😃 DFK 1 Link to comment Share on other sites More sharing options...
Curt Posted October 29, 2019 Share Posted October 29, 2019 First I’d like to say that this topic and everyone on it is inspiring. 850+ posts and still going. You are all amazing! I read this article in the Times today. Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html I dug a little deeper and found this article as well. https://www.medpagetoday.com/hematologyoncology/lungcancer/82933 I was briefly in to making my own Kefir. I may get back into it. It’s an amazing source of natural probiotics. DFK and Charles 2 Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 29, 2019 Share Posted October 29, 2019 Thanks @Curt Ok, we're under a winter storm watch here in KC (REALLY??). Don't like to go outside when it's under forty! Snow tomorrow. YUCK. Anyway, I tracked downed the research summary from one of Saturday's presenters, Dr Zhang, from the University of Iowa (not the Dr. Wall of Shame Dude). Here is the outcome on the AE and IO published in October, 2019. https://www.cancertherapyadvisor.com/home/news/conference-coverage/iaslc-north-america/iaslc-north-america-2019/gut-microbiome-lung-cancer-risk-immunotherapy-treatment/ Here is the link about this from MD Anderson that was also discussed: https://www.cancertodaymag.org/Pages/cancer-talk/October-11-The-Week-in-Cancer-News.aspx I was taking one of those OTC pre and probiotics and the first thing my Integrative Medicine Doctor at the University of Iowa did was tell me to discontinue, even though I take take targeted therapy. I tried the DIY keifer it was just too gross for me so I buy mine to make chia pudding. Here's the recipe: 1 Cup Keifer 1/4 cup chia seeds 1 tsp of cinnamon 1 tsp of maple syrup You can add things like a table spoon of oats, barley, rye or blueberries Place in a jar, shake it up and viola two to three hours later you've got "pudding". Chow! Charles, Curt and DFK 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted October 29, 2019 Share Posted October 29, 2019 Anybody get the flu shot and felt like they had the flu a few days later? Came on suddenly yesterday and lasted until a few hours ago. Thinking some kind of immune response. If it lasted more than a day, was headed for the docs. DFK 1 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted October 30, 2019 Share Posted October 30, 2019 Barb, I've never gotten a flu shot, ever, they always scared the bejesus outta me! Hope you continue to feel better 😀 DFK 1 Link to comment Share on other sites More sharing options...
Curt Posted October 30, 2019 Share Posted October 30, 2019 I got the flu shot. I was warned I may feel some mild symptoms shortly after. DFK and Barb1260 2 Link to comment Share on other sites More sharing options...
DFK Posted November 1, 2019 Share Posted November 1, 2019 Good Thursday Evening to all. I just bagged #21 dose, uneventful infusion. Labs remain within normal parameters. No change in my side effects, still with the itchies, off and on with the daily headaches and generalized muscle aches and pains persist. I’ve had a few "injuries" from my biking and a few tumbles during my hikes and I noticed my joints where the injuries are, are more pronounced than before the LC diagnosis. The pain, swelling, bruising and inflammation just lingers on and on and on. Sprained my baby finger in August and only recently have I been able to use my hand with minimal discomfort. Ankles and knee joint pain still lingering from fall 2 months ago....this has not been my norm pre Durvalumab. Since peripheral edema is another side effect of Durvalumab and I have gained some 25lbs since I started on the Durvalumab and my ankles were started to get a little puffy and pitting, my Cardiologist prescribed some Lasix on an as needed basis. My Cardiologist was very clear that my fluid retention was not related at all to my heart, but to the Durvalumab. My oncologist agreed. Though I am active and have not limited my physical activities, my oncologist ordered an abdominal ultrasound to ensure that nothing funky is happening to my liver and that I am not retaining abdominal fluids.....aka ascites. Fatigue still with me....per my usual, just going with it and doing the best I can do on a day to day basis. RonH-Thank you for your informative new journey on Alectinib. I wish you only good fortune and future NED. Has bradycardia settled down? Tomm-Very good to read that your fatigue is under control and your TSH is WNL. NED is awesome.....congrats, well done! Kate7617-Good luck on your 10/31 CatScan. Barb1260- Hoping your symptoms have abated with Durvalumab Holiday. Charles-Anecdotally, I only got #8 and #9 infusions held because of radiation pneumonitis. I was willing to NOT interrupt my infusions but I was told if I did not tamp down my pneumonitis with Prednisone, I had a high probability of developing pulmonary fibrosis in the affected area. Rower Michelle-Thank you for advocating and representing the LC community with your attendance and input @ CEU Lung Cancer Awareness. Positive results for NSCLC of Durvalumab and Tremelimumab Phase III Poseidon to be published soon. Lots of itty bitty teaser articles are being circulated but I'm waiting for the actual Clinical Trial results. Silly Cat-I am with you all the way on flu shots......never had one, and currently, don't plan to get one. Never had the flu (knock on wood) and hope my immune system continues to serve me well. On a lighter note, been busy as heck with house guests and grandkids.....I moan and groan about how busy and tired I am but on some level, it's through the grace of life that I am able to live it so fully..... With Blessings and Gratitude, Take Care everyone, DFK Rower Michelle, Tom Galli and RonH 3 Link to comment Share on other sites More sharing options...
RonH Posted November 1, 2019 Share Posted November 1, 2019 DFK - Yes the reduction by my Cardiologist in Metoprolol Tartrate beta blocker dose by 50% has seemed to stabilize the Bradycardia. It still dips to below 60bpm sometimes into the upper 50's, but that is rare and seems to have settled in normally at 68 to 72 bpm. I had read somewhere that some people had to have a pacemaker implanted to stabilized their heart rate while on Alectinib so I was concerned. Right now my biggest challenges, side effect wise, is the constipation, fatigue and weight gain. The good news was that this weeks blood test results all came back within the "normal range". I was a little worried regarding my liver function tests as they were initially very elevated when I was first started on Durvalumab, but this week the AST & ALT levels were in the middle of the normal range after 2 weeks on Alectinib. There was no TSH check this week as the ONC will only order the thyroid tests once every 4 - 6 weeks. Still have the itches on my legs, but after a year of living with them due to the Durvalumab, I hardly even notice it anymore. Had my fill of leftover "trick or treat" candy today. I read that taking the Alectinib with high calorie high fat content food helps the body absorb it, so I did my part today! Now I am looking forward to Thanksgiving before too long. 🦃 Have a great weekend all. Rower Michelle and DFK 2 Link to comment Share on other sites More sharing options...
DFK Posted November 1, 2019 Share Posted November 1, 2019 RonH-Great to hear you have been tweaked and fine tuned to perfection.....great news on medication titration for a perfect heart rate and liver panel normalization. Ha, Ha, you'll be in fat city come Thanksgiving, no problem absorbing and metabolizing your Alectinib then. Thanks for the giggles and good news. Take Care, DFK RonH 1 Link to comment Share on other sites More sharing options...
Charles Posted November 5, 2019 Share Posted November 5, 2019 got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST! hooorah! Tomm, DFK, Tom Galli and 2 others 5 Link to comment Share on other sites More sharing options...
DFK Posted November 5, 2019 Share Posted November 5, 2019 Charles-Love reading "no new" at the beginning of your sentences. Hard earned positive outcomes are music to my ears. Thank you for sharing your wonderful news. Forward and onward, I am following in your footsteps. Take care, DFK Charles and Barb1260 2 Link to comment Share on other sites More sharing options...
Tom Galli Posted November 5, 2019 Share Posted November 5, 2019 Charles, Face Durva to the enemy and kill! Stay the course. Tom Charles, DFK and Barb1260 3 Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 5, 2019 Share Posted November 5, 2019 Death to the beast! Onward. Side effects suck. So sorry about that, keep fighting! DFK, Sillycat1957, Barb1260 and 1 other 4 Link to comment Share on other sites More sharing options...
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