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RonH

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Everything posted by RonH

  1. Well the biopsy results are in. I am officially off the Durvalumab Immunotherapy after 18 infusions. All the previous tumors and lymph nodes were clear except for one lousy spot. They are not sure if it is residual cancer that the chemo/radiation/more chemo/Durvalumab didn't quite get rid of and it started growing again, or its a recurrence in the same spot, but it's there and the Onc says it's time to move on to other potential treatments. He does not believe continuing with the Durvalumab to be beneficial for me. (He says I'm welcome to get a second opinion if I wish but I don't see much need to). The next step is unknown but the biopsy specimens from Monday along with blood samples taken today are being sent off for biomarker testing (by Tempus). Unfortunately it takes 3 to 4 weeks to get the results back. In the meanwhile, the Med Onc will be referring me back to the Radiation Onc that I used for my initial radiation treatments. He believes that they may be able to do stereotactic treatments on the one remaining active tumor but he isn't sure. I'm just waiting for the Rad Onc to call me back with available appointment days/times. If given the option and the Rad Onc thinks that she has a reasonable chance of getting it, I will elect to have that done next. At least the actively growing tumor in the right upper lobe is not near any other organs or critical spots that I know of. He didn't believe that actual surgical removal was a viable option after all the chemo and radiation that I've already had. Sounded like the Med Onc was thinking in the lines of targeted therapy dependent on the biomarker results if the stereotactic radiation is not an option or doesn't work.. Some days you just want to go to bed and pull the blankets over your head and forget about everything. But tomorrow is another day to resume the journey in fighting the cancer again. Wishing all the Durvalumab club members success!! I'll stick around and keep everyone posted. Oh I forgot to write about the thyroid testing saga last month (which seems minor now, but irritated me greatly at the time): Although I had saw on the doctors orders that I was supposed to have all the normal blood tests but in addition a thyroid panel with TSH had been requested. I personally looked at the orders myself as the infusion nurse was accessing my port to draw the blood samples and confirmed that. Then when I saw the Onc later that day and he also confirmed to me the Thyroid panel test had been ordered. When no results came by Friday morning I emailed their office to inquire. That's when the finger pointing started. They first blamed the lab, who then blamed the infusion nurses, who then blamed the doctor, who then blamed the lab, and around and around it went but in the end, no one had sent the blood off to have the thyroid panel tests done. Needless to say, they then had one very upset patient on the phone. Initially they said that I needed to come back in to have more blood drawn but as it was Friday afternoon, it was too late. They then called me back a little while later and said that they still had a vial from Monday that they could use. I said okay and they rushed it off to the lab. When I was back in to see the Onc the following week, before arriving I saw the test results. The T3, T4 and the FTI results were there, but no TSH reading. Furthermore the results were virtually identical to the ones that I had received two tests before that. So when I saw the Onc I noted that the results were for all intents were identical to a previous one several months ago, he immediately caught on that I was implying that they had used a much older blood sample than what they said. He assured me that they only hold samples 1 week and what was tested was from the most recent blood draws. He had no explanation why there was no TSH reading, but with the T3/T4/FTI being the same as several months before, he expected that the TSH would be as well and went ahead and increased my thyroid med dosage. I think I kind of pissed him off with my implied accusation, but they are now very aware that I am checking everything they do and say, and will question anything that does not seem quite right. Oversights do happen and I understand that but I "suggested" that they needed better quality control to assure that what was ordered by the Onc was actually getting correctly done. Well since I'm on my soapbox now, I might as well say that the worse part of the biopsy Monday was in Recovery. Apparently my biopsy was the least serious procedure in the recovery area that I was in. Across the isle, there was an frail elderly lady that was in a lot of pain and was convinced she was dying and was crying for her family. Her vitals were swinging everywhere and her body temperature was dropping. They even brought in a potable heater that had a hose to blow warm air under her blankets. The nurses were running around trying to help and get the doctor there stat. However by the time I was released, she was doing better and her son was there. I hope she made it. Then in the next room over there was an elderly man in his 70's that apparently had a heart attack and was being informed that that he needed a quadruple heart bypass and that it had been tentatively scheduled for tomorrow (Thursday). The doctor explained the procedure to him and his wife and what would happen and that the surgeon would be in the next morning to discuss further. Of course as soon as the MD left in comes the "financial people". Apparently he is on Medicare and it will only pay for 80% of the expected costs and the hospital wanted to know when they could expect payment of the balance and that they "request" payment upfront. (I've had that debate with them before on the "we request" vs "we require" upfront payment. Normally they request it, but don't actually require it, they just imply they do. I've heard that the financial people get a bonus if they obtain payment in advance and some are quite aggressive about it. Once I even got out of the chair and started for the door before they called me back and told me that they could wait to bill me for the balance after they received the insurance payment.) Anyway I then had to listen to his wife and family assure him that they would find the money somehow, but he didn't want to wipe out their savings so he was being reluctant to even agree to the bypass. It was a sad story and I hope and pray that it works out for them. The recovery area sort of made my miserable day on Monday seem very trivial in comparison. Until later...………. -Ron
  2. Edward- I hope the counselor can find additional help, both financial and medical for you. Just based on my experience with the concurrent chemo/radiation, I never really became overly sick. Some do and some don't, so I guess I was one of the "lucky" ones. The radiation had little or no adverse effect on me and the chemo, some. I always had the Chemo on a Wednesday morning. That afternoon I would go home and sleep because I was tired from sitting there all morning, but I felt good. (They give you steroids and other meds to help your body accept the chemo, which those drugs always made me feel good and relaxed). The next day I still felt fine and always went to work. The following day I would also go to work but then about noon on Friday I could feel myself going down hill and by Friday evening I didn't want to do anything but lay in bed. Saturday was full of aches and pains and generally feeling like I had the flu, but it was not terrible, but needed to stay in bed except to eat. Sunday morning was the same but by that afternoon I felt human again and then by Monday morning, I could go back to work like nothing happened. Then that week would start that whole cycle over again, for 7 long weeks. I didn't have any special diet, but you do need to keep your food intake going and not loose too much weight, it just makes you weaker and your body needs the energy to fight the cancer as well as handle the chemo drugs.. Good that you're getting a prescription for the lung irritation (infection?). For my PET scan a few weeks ago, I was told not to eat or drink after midnight. When you arrive and get checked in, they give you a bottle of "water" laced with contrast. You drink that over a 1 hour period. They also start an IV and inject you with a radioactive glucose. I was sitting in a chair for all of that and didn't lay down until I walked into the room where the scanner is. The PET is not much worse than the CT alone, it just takes a little longer. Yes, no glasses or headphones for the CT or PET scans, just for the MRI's. Also at least here, if you're flying or going into some government buildings, be aware that you will be slightly radioactive for about 24 hours. Here they give you a paper to show them if you set off the radiation monitoring alarms. Best of luck to you on the upcoming diagnostic tests. Keep us posted, we're here to provide moral support whenever you want or need it, we've all needed it from time to time. I will be posting my updates later this evening or tomorrow. Not terrible news, but it could be better. No NED or continued Durvalumab Immunotherapy for me, but maybe stereotactic radiation on my one remaining tumor. Waiting for an appointment opening with the Radiation Oncologist to discuss. Also having my biomarker tests done on the biopsy samples from Monday and from the blood samples taken today but it takes about a month to get the results! -Ron
  3. Roseann - Thanks. They did put a light sedative through the IV but I was fully awake and aware. I actually found being placed on my stomach and going into the CT better (less claustrophobic) than laying on my back. I was actually able to keep my eyes open. Barb - Wise choice, while I listen to what the various medical professionals tell me, if there is the slightest doubt or question, I go for a second source. There is only one doctor that I have 100% trust in and he's my cardiologist. Although I could probably have gotten away with taking today off from work due to the biopsy yesterday. I am on my way to work to keep my mind occupied while waiting for the results tomorrow. It's not even 6am yet and I've checked my account on the webpage twice already in that slim chance that the pathologist has already posted the results. It has happened several times that I see the reports before I have a meeting with the Oncologist. Nothing yet there to see, except for various older test reports (CT's, PET's, Biopsies, Procedures, blood tests, etc) for the last several years. ANXIETY!!
  4. Edward, the answer to your question regarding the PET scan will probably be better answered by others here such as Tom or DFK, but the CT only identifies tumors or areas of growth that does not appear normal but those tumors can be benign and not actually be cancer. The PET scan is more definitive but still not 100% proof that it is cancer. A biopsy has to be done to remove actual samples for the pathologists to look at to confirm that it is actually cancer, and what type. The PET scan also helps the Radiologists identify additional suspect areas to test (biopsy), like the lymph nodes and which ones. All together, along with likely a MRI will allow the doctors determine the best course of action. My thoughts and prayers are with you! -Ron
  5. Welcome to the Durvalumab forum Kate. Along with a lot of information you'll find a lot of support here. From my readings you'll find people on here that are just beginning the Durvalumab treatments all the way up to those that have completed it. A lot of experience to be freely shared. Although there are many different experiences with the numerous possible side effects of the treatments, virtually everyone experiences the anxiety of waiting. I myself just last month completed the 18th Durvalumab Infusion and am now waiting for a biopsy report since my last CT and PET Scan indicated "possible" progression in one spot. However the good news was that all the other nodules and lymph nodes show no activity what-so-ever!. I truly believe that the Durvalumab help slow any progression and possibly prevented any new ones. Time will tell. One again, welcome here! -Ron
  6. Just a quick update. Had my most recent lung needle biopsy today, this time they went in through my back and into my right upper lobe, just to the left of my right shoulder blade. No real pain during or after except I did have a partial lung collapse. It however re-inflated by itself before the first x-ray an hour later, and then the second x-ray two hours after the first one confirmed and I was released. A long day, 7am check-in & 4:45pm check-out and I am beat. Results are due Wednesday afternoon. (They didn't bother to tell me not to drink liquids before the procedure so I had to wait for 4 hours in the morning)!
  7. Roseann, My first Durvalumab break was right after my second infusion as well. My liver function test results (AST & ALT readings) shot through the roof and I was forced off the Durvalumab for 5 weeks. It turned out that it was my body way of saying let me slowly get used to this strange chemical you put in me. There was no steroids or anything given, just a break from the immunotherapy. After my liver tests returned to normal and I resumed the infusions my liver function tests have remained perfectly normal ever since. Of course later it was discovered that my thyroid had then shut down because of the Durvalumab so I am now on hormone replacements and likely will always be from now on. Also I have a dry mouth and have lost sense of taste. (Gee I would have thought I would have lost some weight due to not enjoying the taste of food anymore, but no, of course not!). All the other side effects such as the itching and rashes, I have had only mild cases of which were only an annoyance more that anything else. I was hoping to get my 12 months worth of infusions in, but alas my recent CT indicated a possible progression in one of the original spots. CT and PET scans both indicate regrowth and the biopsy is tomorrow morning to confirm. Then Wednesday afternoon I have an appointment with the Onc to discuss the results and what the options are. All the other previous spots all appear to be dead scar tissue and there was no uptake during the PET scans, and the previously involved lymph nodes all disappeared. Mostly good news except for that one location which will knock me off finishing the Durvalumab treatments. The Onc says that due to the location and size (2.1cm x 1.8cm) of the single active tumor, that I may now be a candidate for stereotactic radiation. We'll learn more this week and figure out a plan. I haven't discovered what happens while still in 3A, completed all the radiation and chemo and you've then had progression with one immunotherapy drug already. My Onc says they don't do biomarker testing until stage 4 and I hate the thought of having to wait till then to be able to do something more. I am sure that the insurance company will have some input as well! BTW: I hope your "George" takes a long vacation and then gets lost never to return. -Ron
  8. Don't feel bad. It took me several weeks to figure it out as well. Just type away...it won't be long till others see your posts and respond as well. The members and moderators here are superb. I've only been a member since June but have learned a lot from here. I am (or maybe was) a Durvalumab user as well. I'll find out this week if I will continue with it (I've had 18 infusions of Durvalumab since last November) or if I will now be taking a different route because of progression. Also Stage llla NSCLC -Ron
  9. Edward- There are a lot of very knowledgeable people on this forum and there is hardly a day or two that I don't learn a new thing or hear of something that I wondered about. Although there are similarities for everyone here, I've learned that everyone is different and have had different experiences on the path here to this forum and with this disease. I do very much agree with you that people in general need to be more observant and have anything that just doesn't seem quite right evaluated by a medical professional. Of course as you experienced, they are not infallible either. In my case; being a former smoker over age 55, my primary care physician recommended a Low Dose CT Scan (LDCT) of my lungs as part of an annual physical in early 2014. I went ahead and had it done and the report came back with no indications of lung cancer at all. Receiving a clean report I thought to myself that I had lucked out and had quit smoking soon enough several years earlier. (Laying in a hospital bed for almost a week after a heart attack in late 2012 and then going into V-Fib while in still in the hospital made a good motivator to quit smoking). Shortly after the LDCT in 2014 I went in to A-Fib at the gym of all places. At that time I was still exercising daily at the gym and was loosing weight as part of my cardiac rehab. After several failed attempts at cardioversion over the next year to restore a normal heartbeat, my cardiologists placed me on blood thinners and anticoagulants permanently. I tried to continue with the gym but it seemed that all the heart beat sensors on the machines would sense the a-fib heart beats and alarm on me, my heart rate would be extremely high plus my Blood Pressure would have huge swings. Eventually I stopped going and soon found myself gaining weight and started to get very winded when I did anything physical. Thinking about it I thought to myself that I within the past 2 or 3 years I had a CT scan that was good, I was significantly overweight, I don't exercise much and I had confirmed continuous A-Fib. I had also read on the internet (good old Dr Google) that getting winded and tired easily is sometimes a symptom of A-Fib, so considering these things, I figured that was the just the way it was and wasn't too concerned about it. It did get a little worse as time went by and by not exercising much I gained even more weight even though I still ate healthy most of the time. Then in 2018 as part of my annual physical (which is 100% covered by my insurance, plus my company by then had started to pay us a $150.00 (USD) bonus to have a checkup yearly), I had another LDCT. This time it came back with multiple indications in my right upper lung, which then started all the other diagnostics leading up to where I am today 18 months later. I really don't have anyone to blame other than myself for smoking all those years and then putting off getting things checked out. Up to my heart attack I had rarely if ever visited a doctor and the last time I was in the hospital was when I was a kid 50 years earlier. Being one to have always have considered himself invincible, I even drove myself to the hospital when I was having the heart attack. In hindsight, I made a lot of mistakes along the way, but I do also wonder if the original LDCT did actually have indications and the Radiologist simply missed it in 2014. I went from nothing all the way to Stage 3A in less than 4 years but in any event, I should have not waited for so long in-between LDCT's. Sorry to hear about your journey to where you are today. I'm sure everyone experiences the lung needle biopsy a little different. You are correct that I was awake for it although some sort of light sedative was injected into the IV to help with the nerves. If I recall correctly, they want you awake and responsive so they can tell you to hold your breath while the insert the needle into your lung to take the samples. I would imagine getting to the right spot in the lung is already hard enough without the lung expanding and contracting while breathing. I recall them taking 3 or 4 samples. I would say that I felt absolutely no pain during or afterwards, although I was somewhat terrified of the rather large and long needle when I saw it before they started. I also didn't enjoy being strapped down and completely immobilized. I understand why they do it, but I hate to be restrained like that where you can't even move your head or feet. At that point you're totally helpless and you know it. Report time to the hospital is tomorrow morning at 7am for the next lung needle biopsy and my nerves are building. It'll likely be a long night tonight. Then I have to wait till Wednesday afternoon to get the results. I really do want to applaud you for thinking ahead about your dog and the "what ifs". It goes a long ways to show that you are a good person and a responsible companion/caretaker to your dog. I don't know and it would be a good question for the doctors and nurses or others here, but perhaps taking a sample off an actual rib is different (pain wise) from going in-between the ribs and into the lung. You are right, all I had was a local, and I had no what I would call pain, but did feel some pressure as it was going in and then could hear the samples being taken (a clicking sound), so I guess I would say that my only "pain" was more mental than physical. It also doesn't help being told that you will be at the hospital for at least several hours afterwards and have several x-rays before you are released to check if your lung decides to collapse from the hole made by the needle. Yep, the nerves are certainly in overdrive today. Hoping and praying for the best for you. -Ron
  10. Barb - The way it was explained to me by my Radiation Onc was that because the PET scan is a significantly higher cost than a CT, the Insurance Companies refuse to pay for it unless a "medical necessity" is proven first, which a CT helps provide. I was once also told that Insurance companies (and Medicare) limit PET scan coverage to 3 per life time, but I am not sure about that as based on what I have read, it is just based on medical necessity being proven. Perhaps the level of proof increases after the third, IDK. All the best! -Ron
  11. Edward Sorry to hear about the possibility of your diagnosis. While I tend to prescribe to the thought of "hope for the best, but plan for the worst" I do believe that keeping a positive attitude in this fight is very important. I was surprised, but not shocked to find out 1-1/2 years ago (at age 61) that I had stage 3A NSCLC. Since then I've been though multiple CT's, had both the Lung Needle biopsy (needle between the ribs and into the lungs) and the fine needle aspiration biopsy (bronchoscope tube and needle down the throat), two PET scans, two Brain MRI's, Concurrent Chemo/Radiation Treatments, Follow-up Consolidation Chemo, and then 10 months of Immunotherapy. While everyone is different, I would have to say that while there have been many less than pleasant days, that it was not terrible and that I am still here fighting. While I'm still classified as 3A, most of the tumors in my right lung appear now to be just scar tissue and the lymph nodes that had cancer appear to no longer do so. However there is one spot that decided to put up a good fight against the treatments so next Monday I get my next lung needle biopsy to help determine what my next tool in the battle against this will be. In most regards, while still a 3A, I am in a better condition that I was 18 months ago. While I have a few "battle scars" from the past 18 months, I actually feel pretty good. Keep a positive attitude, don't give up and keep on fighting. I just joined this forum a few months ago and found so many great and helpful people here that I now visit here at least daily. To read the stories here and learn from the experiences from people that are also fighting a similar battle as me helps in so many ways. The CT you had sounds like they did both a Chest CT without and then with Contrast. The PET scan is very similar to a CT Scan except that they inject a radioactive glucose that cells with high metabolic rates (such as cancer) absorbs very quickly. The high metabolic cells that absorbs this then "glow" yellow in the images that the PET scan machine takes and then the radiologists use both the CT and PET images to make their "findings" and recommendations. My last PET scan, I was actually "inside" the machine for exactly 26 minutes. Just speaking from my personal experiences, if there is a positive indication, especially if it is large and/or multiple ones then you will have biopsies done to actually confirm the cancer and determine what type. I understand that the PET scan also helps identify which lymph nodes (if any) may be involved. Both of my PET scans have been "whole body" to see if there is a concern that there may be cancer elsewhere as well. All of this goes into staging the cancer which then determines the treatment options. If cancer is confirmed, you'll likely then also have a brain MRI done to determine if the cancer may have been spread there as apparently CT and PET don't work in the brain. The MRI machine is similar to the CT and PET scan machines, except your head is immobilized and you spend a long time in the machine. If you're claustrophobic you might want to ask to be prescribed some antianxiety meds. They helped me (a little) the last time a few weeks ago, but I do still dread the thought of having another MRI. I also have them cover my eyes with a towel, put ear plugs in, put the headphones on me and then really crank up the classic rock tunes for the duration that I'm in there. Once again, stay positive, don't give up hope and always keep on fighting. Some people do win this battle! -Ron
  12. Bob, I regreted to hear of the possible reoccurrence at the original site of your cancer. I guess we're both heading down similar paths. Although I never quite made it to NED, I was real close, with my previous CT's indicating very positive responses to the Chemo, Radiation and Immunotherapy. Actually my last CT a few weeks ago indicated virtually nothing active in almost all of the previous sites as well as the lymph nodes "disappearing", except there was in indication of probable activity/progression in one of the previous sites in my right upper lobe. I was then taken off Durvalumab after Infusion #18 two weeks earlier. I had a PET scan a week ago which indicated the lymph nodes had no uptake at all and one of the tumors had no activity either and was now "probably" only scar tissue. Unfortunately, one of my original tumor sites decided to glow with a positive response. While still not 100% sure, it is highly likely that I have progression in the one location. I have been scheduled for a lung needle biopsy a week from tomorrow for confirmation. (I have to be off my blood thinners for a week before they will do the biopsy due to the possibility of an uncontrollable bleed). By the way, here it is the Interventional Radiologists who do the Lung Needle Biopsy procedure whereas it is the Pulmonologists do the fine needle aspiration bronchoscope biopsy procedure. My understanding is where and what they are trying to biopsy determines which method they use. I've had both before and this will be my second lung needle biopsy through the rib cage. I had very similar thoughts as you regarding the Durvalumab. As I was finishing the chemo and radiation and the Med Onc said that he was going to start me on a recently approved Immunotherapy drug called Imfinzi/Durvalumab for Stage 3A NSCLC patients, I of course then read every bit of information I could on it. Much of which I didn't understand the medical side of, but what I did understand was that it had been seen in the trials while likely not being a cure in itself, it had been found to significantly increase the PFS (Progression Free Survival) in many NSCLC patients. It was clear to me from the beginning that the PFS was measured in months not years or decades, but that it did help so many. I for one was grateful for the possibility of any extension of time and couldn't help think where I would be if this had occurred 5, 10 or 20 years ago! Early on, my Med Onc trying to explain things to me in simple terms, was that the chemo was used primarily to weaken and kill some of the cancer, but it was the radiation that did the majority of destroying the cancer cells and that it keeps working for months after the radiation has stopped due to the damaged DNA of the cancer cells preventing them from replicating. While there was a possibility that the Durvalumab would keep me NED for a long time, it likely was not a cure in itself and it was likely that progression at some time would occur. I was diagnosed almost 17 months ago now and have been grateful for every day that I've had, but plan to continue to fight for every additional one possible. What Durvalumab did was to give me time to get my affairs in order, so I could concentrate on fighting even harder. As I mentioned in a previous post, and as Tom just mentioned, my Onc said that based on the PET Scan and the location of the only active site, depending on the biopsy results/confirmation, that I may be a candidate for stereotactic radiation. I am all for trying to "fry" the SOB. Anyway, I will stay in contact here as it appears that we're heading down similar paths. Best wishes to you. Stay strong, you've always been an inspiration to many here and will continue to be! -Ron
  13. The treatments depend what stage you are in. I was classified with stage 3A NSCLC (adenosquamous carcinoma) 16 months ago. Been through concurrent chemoradiation, follow-up chemo and then Immunotherapy. Just recently suffered a small setback in the fight, but I am in an overall better condition than I was 16 months ago. Still here and fighting back. Many others have been here a lot longer, even those in stage 4, so don't give up hope and think there is no chance!
  14. Janice - It's completely understandable to be terrified, just about everyone on here has been at some point. I assume that there will be probably a PET scan as well as a biopsy done as I would doubt that they would perform any surgery or treatments without confirmation. They'll also want to know what type of cancer it is such as small cell or non-small cell as that is factored into the treatments. I certainly don't mean to minimize your situation but honestly in many cases a single 1 cm nodule and no lymph node involvement or spread anywhere else would be a godsend to many of us here. My suggestion is to read as many posts on here as possible, but recognize that virtually everyone is different. Although it can be difficult, it is very important to keep a positive attitude in your upcoming journey. I was diagnosed with stage 3A NSCLC about 16 months ago, and I'm still here. After over a year of tests and treatments, while I am still classified as a 3A, all but one of the tumors appear to be gone now with the exception of one SOB location. There are many people here with very positive outcomes to their treatments, so absolutely do not give up hope. There are so many great people on this forum that are willing to share their experiences and offer advice on what they found to be helpful in just about every imaginable situation. We all lean on each other so feel free to ask away. -Ron
  15. My updates - post latest CT Results: As I noted a week ago, my last CT scan about 2 weeks ago indicated a possible reoccurrence in one spot so I had another CT/PET Scan this week. The PET scan did not indicate any new lymph node involvement and none of the previous lymph nodes now indicate any uptake what-so-ever, so that was the very good news. Also good was that one of two tumors in my lung also indicated no update and appeared to now to be just scar tissue. Although it was hoped that the one "active" CT indication was due to an infection, unfortunately it did indicate an uptake and some enlargement on the PET scan in that one location. It's yet to be confirmed to be an actual reoccurrence of the cancer there but I now get to go through another CT Guided Lung Needle Biopsy again. I still have "fond memories" of the last time over a year ago of being strapped down and completely immobilized, and then seeing the biggest needle I've ever seen in my life as it was getting ready to be shoved in between my ribs and into my lung. A lasting impression to say the least. Honestly in reality the last time the lung needle biopsy was completely painless both during and after, but just the thought of it causes some physiological discomfort. Plus there is always the risk of the needle collapsing a lung. In any event, my Durvalumab treatments have now been stopped (after 18 infusions) until after the biopsy. Unfortunately the Onc says that even if it this latest ends up being benign, that he likely may not have me restart the immunotherapy as I am was already in month 10 of the 12 month time limit period that he follows. I am trying to push him to resume the infusions if the biopsy indicates it not to be cancerous, but if it is cancer again, I am for sure off the Durvalumab. However since there is only one active indication now, with no apparent active lymph node involvement anywhere else now, and there is no indications it spreading anywhere and my brain MRI was completely clear, he says that I may be a candidate for stereotactic surgery to destroy the one tumor. So within the next week or so, after being off my Plavix and Xarelto in preparation, I will have the biopsy to see where I go from there. All in all, it could be worse, a lot worse, but I am disappointed to be off the Durvalumab. Another long story/saga on the most recent Thyroid testing, but I'll save that for another possible post. If no one objects, I'll stick around the Durvalumab "club" and follow how everyone is doing. Thanks for everyone's support …... it's appreciated. -Ron
  16. DFK, Opal, Barb1260 & Tomm. Thank you for your thoughts, prayers and well wishes. I have to say, yesterdays news from the CT hit me hard emotionally. However overnight just reading your posts helped a great deal. Today is another day and time to resume the fight. Always have had a stubborn streak, so I don't give up easily. Tomm - When I was originally diagnosed with 3A NSCLC over a year ago and having did a quick study on the subject, I asked the Onc about this expression testing. His statement to me at that time was that the Standard of Care for what I had was ChemoRadiation, more radiation and then if necessary, Immunotherapy which would be Durvalumab provided there was no progression during the chemo and radiation and that the PDL-1 Expression would not affect the treatment plan if there was no progression. As such, I am not sure if the PDL-1 Expression was ever even determined. I've looked and I do not see it in any of the pathology reports. I will ask him again here in another week after the PET scan. Thanks again ALL. Ron
  17. Well #%[email protected] The results from my latest CT and MRI from last Friday are in. First, the good news: The Brain MRI indicates no spread or concerns there. Now, the not so good news: The CT indicates a “worrisome” possible progression in one tumor in my right lung. No significant changes to the lymph nodes or the other tumor, however the one appears to have enlarged. The ONC and Radiologist says that they cannot be sure as it could be simply an infection there, or it could be just a delayed radiation fibrosis, or in the worst case, progression. Therefore not knowing, my Durvalumab Infusion today (was to be #19) was withheld. I am going to be put on antibiotics for a week and then have a PET Scan. The day afterwards I will then see the ONC again, but will in all probability will then be scheduled for another CT Guided Lung Needle Biopsy for confirmation. He doesn’t want to schedule the biopsy until after the PET Scan, and then due to also being on blood thinners, I have to be off them for a week before the biopsy. The IR’s tend not to allow one to be on blood thinners and anticoagulants due to an possible uncontrollable bleed. Of course, my cardiologist is concerned about me being off them since I am in A-Fib. Last year, the Cardiologist won the argument and I was permitted to at least stay on aspirin while off the Plavix and the Xarelto. I guess another “discussion” between the Radiologists and Cardiologists and the ONC will need to take place. A couple of things: Regarding Durvalumab and routine Cortisol testing; my ONC says that they do not normally test Cortisol readings for patients on Durvalumab unless there are adrenal problem symptoms such as the other blood work going out of the normal ranges. My blood work, with the exception of my TSH levels, looks good. In regards to the TSH testing, with the standard protocol my ONC follows he only tests TSH levels once every 6 weeks, so I had that test today and should hear within a few days where I am on that (having been on 75mg Levothyroxine for over 2 months). Additionally, and I am not overly pleased to hear this, but my ONC says that his practice does not make up Durvalumab infusions that are missed during the 12 months of infusions, with the calendar starting on the day of the first infusiuon. It is whatever number of infusions you can get completed within that 12 month (52 week) period, whether it be 18, 19….or up to 26. There are no “make-ups” past the 12 month anniversary and in his judgement getting the 24 or 26 infusions holds no magic and getting all 26 is not necessarily better. I know a number of people here have the understanding that if they are off the Durvalumab temporarily for any reasons, that they will still receive all 26 infusions even if it runs over the 12 month period. Can anyone confirm that? Of course in my case, if progression is confirmed, then I am off the Durvalumab anyway. Can’t say that I have ever hoped for an infection, but I hope the antibiotics helps clear the scans and I can resume the Durvalumab. While things could be worse, I've sure had better days!
  18. SPS - I can't speak specifically about Keytruda as I am on Durvalumab, but a rash with or without itching seems to be fairly common on many of the immunotherapy drugs. I broke out in a rash within a week or two after my first infusion, which worsened after the second one. My infusions were then temporarily stopped for 5 weeks due to my liver function (AST & ALT) test going high (yet another side effect to keep on eye on). Once those returned to normal levels, and my rash went away, I restarted the immunotherapy. After almost 8 months now I still get the "itches' and maybe a little rash the week of the infusion, but no where as significant as it originally was and I barely notice.
  19. RonH

    Port?

    Port - With so many blood tests and infusions ahead, definitely get a port.
  20. Roz- Definitely bring it to the attention of your Onc, however according to the lab results I receive, the "Reference Range" for TSH is 0.178 to 4.53 is with in the normal range, however I see on the internet, that there are other "reference ranges" such as 0.4 and 4.9 . It may depend on the specific lab, I don't know. I would suspect that being at or below the far low end, they would also check your T3 & T4 numbers. DFK - You are correct. As far as I am concerned the ONC/Labs should have been checking my TSH long before they actually started to. I started Durvalumab in early November of 2018 and the first time they checked TSH was in late May of 2019 and only then discovered that I had a TSH level of 44.03. (A check by my PCP back in March of the previous year had me at TSH=3.17, well within the normal range). Per my online readings, Durvalumab sending people into Hypothyroidism , or in some cases, Hyperthyroidism, is fairly common and therefore should be a fairly routine blood check when on immunotherapy. Tomm & Charles - As I noted in earlier posts, once started on levothyroxine, my TSH levels started dropping and after a short while, within10 days to 2 weeks or so, I could tell my energy levels had significantly increased. I am currently on 75 mcg, and working my way up to the proper dose. The results I have from 7/15 has my TSH down to 34.13. I was told by my Onc that they only test TSH once a month (i.e., every other Durvalumab infusion appointment), and normally only adjust dosages every 4 - 6 weeks, so this past Monday 8/12 they should have checked my TSH / T3 / T4 levels again. The results are not back or published to where I can get to them yet and it's been 5 days now. Part of the problem is that the lab that my Onc uses is in their Oncology facility but is not able to do the TSH testing there, so that lab sends the samples off to their corporate labs in another state for those tests which delays things. I believe my Onc and I will have a heart to heart discussion during my next appointment with him regarding blood testing, to include why I am not getting my Cortisol level tested. I have noticed that between the ONC, then the Infusion Nurses who access my port and draw the blood samples, then the lab on site itself (who as mentioned is a independent lab with their equipment in the ONC's facility), and then the main lab actually doing the thyroid panel analysis , that you have to keep an eye on them to confirm that you are actually getting all the tests that the Onc ordered. Of course during the next appointment on a Monday, I will formally be getting my latest CT and Brain MRI results back from him (from the scans the Friday before), and I am also scheduled for Durvalumab #19 that day, so I may have other things on my mind depending on what I hear. Robert - Congratulations. Enjoy your well deserved rest but be sure to check in and keep us updated. Thank you so much for leading the way and providing so much advice and for sharing your experiences with us who are not far behind you as well as with those just starting out in the journey. -Ron
  21. By all means ask the Radiation Onc about the scans they do during the course of the radiation treatments. As Georgia noted, they are not as definitive as CT or PET scans, but the trained eye of an RAD Onc can tell the direction things are heading. Last year about this time I had started the Concurrent ChemoRadation treatments for Stage 3A NSCLC. The Chemo was once a week (on a Wednesday) and the Radiation every weekday. About once a week, the Radiation Techs would announce it was a "picture day" and that they would be scanning my lungs/chest right after the radiation treatment. The same machine is used, so your husband may not even know it is being done. Then the Radiation Onc would normally say that it appears that the radiation was having a positive effect, or that there was no change over the week, but she always noted that they would have to wait for a CT to do any diagnostic level reviews.
  22. RonH

    Port?

    I have a port that was implanted after my initial ChemoRadiation, but before the follow-up chemo and now 18 immunotherapy infusions so far. They draw the blood samples from the port as well as do the infusions, normally with only one needle stick to do both. The lab is on site, so the blood samples are drawn and analyzed while I'm in the chair and if okay, out comes the infusion bag and in goes the infusion. Afterwards they flush the port with saline through the same needle and then inject some heparin into it to prevent clotting. This needle stick is normally pretty painless, but do use the numbing crème starting and hour or two before the appointment. I actually had the port used the very next day after it was surgically implanted. I've never had them have to insert the needle into the port more than once whereas I had them make 4 or 5 attempts to find a good vein in my arm. It was very rare for them to get an IV into my vein on the first attempt. By all means, get a port, especially if your insurance covers it. The only drawback is after you are done with treatments, the port will have to flushed in a fairly frequent basis, or it has to be removed. Also the tube running under your skin up from your chest to the jugular vein in your neck feels a little strange at first, but you get use to it. It is not really noticeable to other people unless you have your shirt off as the there is a lump where the port is and if someone looks close, they can see the indication of the tube under the skin.
  23. Well, Durvalumab Infusion #18 is in the bag, or maybe better put, was in the bag and is now in me. Being a big guy, I get the a dose of 1,500mg of Durvalumab diluted into a 250ml bag of saline solution. I can already feel the itching increasing so I have that and a little additional fatigue to look forward to for the next few days. Hopefully this infusion will be similar to most of the previous ones and that no new side effects occur nor the grades of the normal ones increase. I will have to say that finding my TSH levels so high and then be started on the thyroid hormone replacement meds has made a significant improvement in my energy levels. Eleven more days to my next CT and then brain MRI, and then all of that following weekend to worry about the results before getting them on Monday two weeks from today. I'm thinking maybe I won't schedule CTs and similar tests on Fridays anymore and then have to wait till Monday for the results!
  24. I believe everyone handles chemo a little different. I have been fighting 3A NSCLC for almost 16 months now. Started out with Concurrent ChemoRadiation over 7 weeks, followed by a month of rest, then 5 weeks of Consolidation Chemo. followed by another month long break, and now have been on Durvalumab since last November (had to take December off due to side effects of the immunotherapy). So far, all positive responses to the treatments. As far as chemo was concerned, I was always given Carboplatin and Taxol and normally had my infusions on a Wednesday morning. That day I would go home tired from the 5 hour ordeal, then have an early dinner and go to bed the rest of the day and that night. The next day I would go to work (office style work) and feel fine, but by Friday afternoon I could feel myself starting to go downhill. By Friday night and all day Saturday, I would ache all over, have joint and muscle pains and just generally feel bad. I had no appetite, but no real nausea either, so I continued to eat, but primarily soups and breakfast cereal. By Sunday evening I could tell that I was on the upswing and by Monday morning I was well enough again to go to work until the whole cycle started over again on Wednesday. Although I didn't have to continue to work, I felt it was better at least mentally for me to keep my mind busy and occupied than to just stay home and feel sorry for myself. I also believe it helped to have the support, thoughts and prayers of my coworkers and had told them to always feel free to ask questions as I didn't mind sharing my experiences with them. Anyway back to Chemo.....other than the other drugs they infused before and after the chemo infusion, I didn't really take anything except for Claritin the day before my infusions. It had seemed to help some when my wife was going through Chemo for Uterine Cancer the year before so figured why not. To keep my protein intake up as well as my vitamins and minerals, I also started to drink a bottle of Ensure High Protein Nutrition Shake every morning, and another one after dinner if I ate "lite" that day. (Both my Med ONC and my Rad ONC offices had coupons for discounts). I agree with everyone, it is important to stay hydrated and nourished, but feel it also important to remain in an active and good state of mind to fight this fight. Best wishes to both your husband and you. -RonH
  25. DFK - You are quite correct that there is a concern about all the radiation we receive from both the radiation treatments and all the scans we had and will have. It’s well known that radiation can/will do damage and can cause cancer, so as my Onc puts it, they try their best to “cause no harm” with their treatments and not do more than they feel necessary to treat your condition. Back in the 70’s while in college, I took all of my technical electives in Nuclear Engineering courses, including “Nuclear Safety” and then while an Army Officer, I received training in Nuclear, Biological and Chemical warfare defense, so radiation safety has always been a subject that I followed. Of course back in my days the radiation was measured in terms of RADS, REMS and SIEVERTS, not “GRAYS”. Last year when the Radiation Onc first mentioned how many “Grays” I was going to receive, I thought WTF, why is she discussing “Grays” which to me was a type of alien visitors from another world. (But that is a subject for another day in a different forum). Anyway, once I learned more about the current Gray (Gy) units of radiation measurement I thought Wow, that is a lot of radiation to be exposed to and absorb, and is that really safe at all? But in the end I came to the realization and conclusion that it would be better (in my opinion) to fight my current cancer with the radiation as the medical experts prescribe and not to be overly concerned or paranoid about the possibility of maybe getting cancer in the future from the radiation. I still want to be aware of what is going on and be an active participate in making “informed” decisions about my treatments, but I also understand there is always a “risk verses potential benefit” in just about everything we do. <-- My philosophical thoughts for the day. Bob - As it just so happened, I had purchased a bottle of the Biotène Dry Mouth Oral Rinse (Mint Flavored) last weekend but hadn’t opened it yet. This morning I did, and it does help. As I was writing this about 3 hours later, and after 3 bottles of water and one cup of coffee, my mouth still felt better. A little dry, but not “bone dry” like most days. Thanks! Tom G - You asked if I have been or am being treated by a Pulmonologist: The short answer is yes. The longer answer is that I was tested in depth about 6.5 years ago after my heart attack. The testing did not reveal any significant pulmonary issues with capacity, etc. other than “mild” COPD. However as part of all the post event diagnostics I also went through a sleep study and was then diagnosed with moderate to severe obstructive sleep apnea. I was prescribed a CPAP to wear at night and have worn it every single night since. My EP Cardiologist warned me not to even to take a nap without it on and I am to the point now where I can’t even doze off without it being on. Although a pain to wear, and it took about 6 months to acclimate to using it, I sleep so much better with it now. Since a prescription is required to obtain replacement supplies for the various parts of the CPAP, I have a yearly check-up with my Pulmonologist. However other than taking a few vitals, asking a few questions, and listening to my heart and lungs, from him it’s usually “thanks for coming in, lose some weight, continue with the CPAP, see you next year and here is my bill”. For my cancer, I did have another Pulmonologist do the EBUS procedure and then later do a follow-up bronchoscope, but I am not being treated by one for anything specific right now. Nor have I had any pulmonary tests performed just before or during my chemo, radiation or immunotherapy. Once it was confirmed that I had Stage 3A NSCLC, it was goodbye Thoracic Surgeon, hello Medical and Radiation Oncologists and I started ChemoRadiation treatments almost immediately. In fact at the advice of my Med ONC, I cancelled a family vacation to Florida that was scheduled 2 weeks from then so I could start my treatments as soon as possible. According to my ONC, a 3 week delay in starting cancer treatments is a very long time and such a delay that should avoided if at all possible. So I took his advice and cancelled the trip but sincerely hope that in the long run that those 3 weeks were worth missing my father’s 90th birthday celebration. But I am still here and have visited him several times since, so all is good. Also for those that may be curious, yes I was a former smoker from the age of ~26 till I was 56. My last cigarette was on the day of my heart attack back on September 6, 2012. Update: My new O2 Oximeter arrived today. It is indicating 96% SpO2, not great, but much better than I had expected. (Accuracy range = +/- 2%) Opal - My very first side effect to the Durvalumab was a moderate rash and itching on back, chest, upper arms and most of all, lower legs. There was even a few days where the bottom of my feet itched. Scratching and tickling yourself at the same time just seemed plain wrong! 😄 The rash went away when I was pulled off of Durvalumab last December for about 5 weeks due to my temporary elevated liver function test results. After I resumed treatments in January there was no more rash but the itching returned, but at a less severe level. As I mentioned in a previous post, a Benadryl (Diphenhydramine) allergy tablet at night and a Claritin (Loratadine) tablet in the morning (both OTC) seems to help me some with the itching or at least makes it bearable and some days unnoticeable. This was at the suggestion of my ONC so I have added those two pills to my daily pill intake. Charles - Still waiting for my pH test strips to show up from Amazon. Thanks for the advice. Since I am not an Amazon Prime member, in order to receive free shipping I also ordered "11 Parameter Urine Reagent Diagnostic Test Strips", for the detection and screening of "Leukocytes, Blood, Specific Gravity, Urobilinogen, Ketone, Glucose, Protein, Bilirubin, Nitrite, pH and ascorbic acid". Not sure what I am going to do with all this information but at least I will have something to monitor and watch for sudden changes. At the very least the strips will give me a target to aim for in the morning. 🙄 All - Another question out of curiosity: For those of you out there that have Sleep Apnea and wear a CPAP or BIPAP at night, have you noticed any significant changes in the AHI’s (apnea-hypopnea index) that are recorded? While I have always had some fluctuation in readings from night to night, it seems like since starting Durvalumab, the amount of variation in AHI’s have increased to almost double the range it used to be. None of the AHI readings have reached to any level where I am concerned, just that they are fluctuating over a lot wider range now. Also it may just be my imagination, but after starting Durvalumab I also seem to have much more vivid and intense dreams than I used to. Not necessarily a negative thing, but I am curious if anyone else has had the same experiences? Thanks!!!!!!! Hope everyone is doing well this evening.
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