Opal Posted December 10, 2018 Share Posted December 10, 2018 Kleo, I was taking Prednisone 70mg daily. Fairly high dose. I was fine on them. Except made me cranky, eat eat and eat more, and cry for no reason. Oh and sleep was limited. I've heard some people had worse side effects so probably everyone reacts differently. TRIPLETS lol! Then maybe I wouldn't get any side effects either😀 (from durva). Keep us posted on rad doc visit. Sending prayers. Bob, Re the link on antibiotics, OK now I'm wondering about those antibiotics I took while my Immuno was on hold. So even tho it was only on Mon, Wed, Fri while I was on steroids. Wonder if that cancelled out 3 prior infusions. Shall I sing Que sera sera???😥 Next visit I'm asking about Biomarkers. I didn't have done either. Kleo 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted December 10, 2018 Share Posted December 10, 2018 This confirms biomarker testing can be done from blood work. https://www.nccn.org/patients/resources/life_with_cancer/treatment/biomarker_testing.aspx I personally had 11 test tube size viles of blood pulled from me in one sitting to verify the biomarker test results from my pleural effusion fluid. Based on what I have learned I don’t understand why this is not the first test done when you are diagnosed with lung cancer. I am hopeful the current targeted therapy I am receiving will continue to work for me. I’m in the 4th month and go for a CT next week to verify its still working. I beleive it is. After the biomarker testing I was told immunotherapy treatment would not work for my mutation, EGFR. 🦅 Link to comment Share on other sites More sharing options...
Opal Posted December 10, 2018 Share Posted December 10, 2018 Eagle13, I agree and also don't understand why this isn't done first. I'm going to inquire next appointment. May I ask what is difference in targeted therapy and immunotherapy you were getting? Good luck next week on CT. Maybe you will share. "Never underestimate the power of prayer" Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 10, 2018 Author Share Posted December 10, 2018 Opal Regarding the antibiotics these results are random tests nothing more if doctor gives you antibiotics there is very good reason. What comes first the horse or the cart. .Lol Antibiotics over the course of your treatment might be a concern for a individual, That is why doctors get the big bucks and never fell asleep at classes like me. That song is as good as any works real well for me.😎 Kleo 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted December 10, 2018 Share Posted December 10, 2018 12 minutes ago, Opal said: ..... May I ask what is difference in targeted therapy and immunotherapy you were getting? Good luck next week on CT. Maybe you will share. "Never underestimate the power of prayer" - Amen I was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion. I am now Stage 4. Biomarker testing was done on the fluid that was pulled. I sought a second opinion with the agreement of my Onc. My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid. Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy. The targeted therapy is 1 pill I take once a day, every day at the same time. The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso. I am a non-smoker. EGFR is typical for non-smokers who get non small cell lung cancer. 🦅 Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted December 10, 2018 Share Posted December 10, 2018 Here is the explanation of the biomarkers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137804/ 🦅 Link to comment Share on other sites More sharing options...
Opal Posted December 10, 2018 Share Posted December 10, 2018 Bob, it took a minute but I get it! Thanks for that!! Eagle 13, after reading your reply I do recall reading that thru this journey. Thanks for the link. And for your story. Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Kleo Posted December 10, 2018 Share Posted December 10, 2018 Just got in from radiation doc. She said likely I'll have to do another biopsy on the rib that's lighting up. Said she will get with my onc and they are going to take it to the tumor board but she may want to try stereotatic radiosurgery on my initial tumor. Didn't think you could do radiation again to the same area but what do I know. 😕 Now I gotta wait to see onc on the 19th to see what the plan is now. Que sera and Fa La La La La! Roz and Robert Macaulay 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 10, 2018 Author Share Posted December 10, 2018 Kleo If you get that treatment you will not be short of something to listen to. lol I thought the same thing about radiation for the second time as i had it previous in 2002 and they told me prior to mine this year as long as it is not in the same spot. What will be will be Bob Link to comment Share on other sites More sharing options...
Kleo Posted December 13, 2018 Share Posted December 13, 2018 Just got a call from the radiation doc...she's scheduled a biopsy for me of the new nodule for Dec. 27.. Kinda weird my radiation doc did that and not my oncologist.... I haven't even seen my onc yet! 🤨 Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 13, 2018 Author Share Posted December 13, 2018 Kleo Could be they are communicating by email and she is the messenger. ? Dec-27 is my next blood work for infusion on Jan-2 . Bob Kleo 1 Link to comment Share on other sites More sharing options...
Kleo Posted December 14, 2018 Share Posted December 14, 2018 True Bob I'm sure that's likely the case. I doubt my radiation doc would do that without consulting the onc. first. Bah....hate waiting for answers. I'm too impatient for this. LOL Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 14, 2018 Author Share Posted December 14, 2018 I had one done earlier this year on my neck after pet scan and the nurse prepared me for the biopsy on my right side until the doctor came in and said it is on the left side i am going to work on. Oh well. Bob Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 19, 2018 Share Posted December 19, 2018 Good luck to the twins tomorrow! Link to comment Share on other sites More sharing options...
Opal Posted December 19, 2018 Share Posted December 19, 2018 Bob, Kleo, wonder if either of you got the flu shot while on Durvalumab Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 19, 2018 Author Share Posted December 19, 2018 Opal No not in recent years, There is no concern with getting the flu shot while on Durvalumab just not on the same day as your infusion, Just in case you have a reaction they want to know what caused it. Link to comment Share on other sites More sharing options...
Opal Posted December 20, 2018 Share Posted December 20, 2018 Bob, thanks for reply. I did have both within hours and then rash started. After some searching I found there have been few studies on flu "jab" and Immuno in Basel Switzerland and Kleo was right!! The combination together did have big effect on my system. Link to comment Share on other sites More sharing options...
Kleo Posted December 20, 2018 Share Posted December 20, 2018 See!? That's a lot for your system to take all at once imo. I think your poor system was like WHAAAAA.....?? Well my doc postponed my durva treatment. Didn't get it today. She only suspended this one treatment pending the results of my biopsy the 27th. She's not totally convinced this isn't some post treatment activity she said...because the activity is relatively low. And EWWW it's a needle biopsy this time! Better knock me out for this! Yikes.😨 She seems relatively unconcerned about the glowing rib. Said radiation would take care of it. Well ok then. LOL Robert Macaulay and Rower Michelle 2 Link to comment Share on other sites More sharing options...
Eagle13 Posted December 20, 2018 Share Posted December 20, 2018 Originally I was told needle biopsy was the only option. Except for me, the nodule was too close to my heart so serious surgery was needed. I declined. After monitoring for almost a year, I was told there was a procedure called a navigational bronchoscopy. I opted for that since it was minimally invasive. I am now almost 1 year to the day a cancer patient/survivor stage 4 metastatic adenocarcinoma lung primary from my biopsy via the navigational bronchoscopy in 2017. My CT this week showed results that the targeted therapy is working for me and has shut down the cancer compared to my last CT in October. I am convinced the genetic testing is the right approach, at least for me. Stay positive and never underestimate the power of prayer. 🦅 Roz, Rower Michelle, Kleo and 1 other 4 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 20, 2018 Author Share Posted December 20, 2018 Kleo I had four biopsy including the needle biopsy and for me was the least invasive and no pain whatsoever, The bad news was the sample was no good and had to get another full blown scope. I sometime think radiation doctors are on different wavelength, The one i had kept asking me how i thought about the radiation. I am still thinking about that answer. lol Bob Kleo and Rower Michelle 2 Link to comment Share on other sites More sharing options...
Opal Posted December 21, 2018 Share Posted December 21, 2018 Kleo, or shall I say Dr Kleo, you are too funny but you were right on, it seems about flu shot and infusion too much at the same time. Sending prayers and all good thoughts for you on your needle biopsy. You won't feel a thing! Eagle13, wonderful to hear about your CT results and targeted therapy!! Rower Michelle and Kleo 2 Link to comment Share on other sites More sharing options...
Roz Posted December 21, 2018 Share Posted December 21, 2018 Kleo, So you are having a biopsy on the 27th? How large did they think your mass is that they are going in with a needle biopsy? I hope you get some answers. What is your specific cancer mutation? Ro Kleo 1 Link to comment Share on other sites More sharing options...
Kleo Posted December 21, 2018 Share Posted December 21, 2018 Roz- this biopsy is just for the new nodule that recently showed up. It's not very big I don't think...and they didn't report a size measurement on it. I asked the doc if it was big enough to get a sample and she said yes so....we will see! My first biopsy via bronchoscopy of my lymphnode said adenocarcinoma. Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 21, 2018 Share Posted December 21, 2018 Yay for the sample size! Takes a few weeks for the biomarker tests to come back. That testing is a game changer. Stay on top of the insurance coverage for it. I’ve been appealing my Foundation One testing for a month. Wasn’t cheap but totally worth it! Kleo 1 Link to comment Share on other sites More sharing options...
Roz Posted December 21, 2018 Share Posted December 21, 2018 Kleo, Where is your new nodule located? Only 6 days to go for your biopsy! Hoping all goes as smoothly as possible! Ro Link to comment Share on other sites More sharing options...
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