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RonH

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Everything posted by RonH

  1. Tom G - Flu shot and Cancer Treatment Guidelines reposted in a new thread per your request. On that posting I also put links to the webpages where the info came from. Thanks - Ron
  2. Regarding flu shots and Durvalumab (and cancer treatments in general); my Onc told me last year not to worry about it and that the benefits from the flu shot and its help preventing getting the flu far outweigh any potential risk of any chemo or Durvalumab interactions with it. I personally had my flu shot last year a few weeks after my last chemo and a few weeks before my first Durvalumab, and had no issues. With that said, I did find these guidelines from our friends up North in Canada.  These guidelines are to ensure that patients with cancer who are on treatment receive appropriate influenza immunization advice. The information is provided as a resource/guide only and does not take the place of any diagnostic, treatment plan or recommendations from a patient’s oncologist or specialists. 1. Patients on active chemotherapy, immunotherapy (including checkpoint inhibitors) or radiation therapy can receive inactivated influenza vaccine if not medically contraindicated. 2. Patients should not receive live attenuated influenza vaccine. This includes the intranasal form of the vaccine (e.g., FluMist®). 3. Inactivated influenza vaccine can be given at any point during the patient’s treatment, recognizing that while they may not get the full benefit of the vaccine, it still provides some value for patients. The optimal timing is not known. 4. For patients who have had a stem cell transplant the general guideline is that the influenza vaccine should not be given if the stem cell transplant is < four months in adults and < six months for pediatrics. 5. Patients who are treated with rituximab, or other B-cell depleting antibodies, should not have the influenza vaccine if the rituximab dose is < four months. 6. Patients receiving single agent checkpoint inhibitors such as PDL-1 inhibitors (e.g., durvalumab, atezolizumab) and PD-1 inhibitors (e.g., pembrolizumab, nivolumab) can receive inactivated influenza vaccine. 7. Patients treated with CTLA-4 inhibitors (e.g., ipilimumab, tremelimumab) alone or in combination with other anti-cancer agents and those who have discontinued treatment should not have the influenza vaccine if < three months. 8. Patients on clinical trial protocols should continue to follow instructions based on their specific protocol. 9. Families and care providers of cancer patients should be encouraged to consider receiving an inactivated influenza immunization if not contraindicated. The live influenza vaccine is not recommended because of the high risk of influenza viral shedding. https://www.skpharmacists.ca/uploads/media/5bd37c3345390/sca-influenza-immunization-guideline-october-2018-final.pdf?v1 http://www.bccancer.bc.ca/nursing-site/Documents/BC_Cancer_Provincial_Systemic_Therapy_Committee-Flu_Vaccine_Guidelines.pdf
  3. Regarding flu shots and Durvalumab (and cancer treatments in general); my Onc told me last year not to worry about it and that the benefits from the flu shot and its help preventing getting the flu far outweigh any potential risk of any chemo or Durvalumab interactions with it. I personally had my flu shot last year a few weeks after my last chemo and a few weeks before my first Durvalumab, and had no issues. With that said, I did find these guidelines from I believe a government run webpage from our friends up North in Canada (the land of Bob). Sorry I forgot exactly where, but it was published within the last year or two. These guidelines are to ensure that patients with cancer who are on treatment receive appropriate influenza immunization advice. The information is provided as a resource/guide only and does not take the place of any diagnostic, treatment plan or recommendations from a patient’s oncologist or specialists. 1. Patients on active chemotherapy, immunotherapy (including checkpoint inhibitors) or radiation therapy can receive inactivated influenza vaccine if not medically contraindicated. 2. Patients should not receive live attenuated influenza vaccine. This includes the intranasal form of the vaccine (e.g., FluMist®). 3. Inactivated influenza vaccine can be given at any point during the patient’s treatment, recognizing that while they may not get the full benefit of the vaccine, it still provides some value for patients. The optimal timing is not known. 4. For patients who have had a stem cell transplant the general guideline is that the influenza vaccine should not be given if the stem cell transplant is < four months in adults and < six months for pediatrics. 5. Patients who are treated with rituximab, or other B-cell depleting antibodies, should not have the influenza vaccine if the rituximab dose is < four months. 6. Patients receiving single agent checkpoint inhibitors such as PDL-1 inhibitors (e.g., durvalumab, atezolizumab) and PD-1 inhibitors (e.g., pembrolizumab, nivolumab) can receive inactivated influenza vaccine. 7. Patients treated with CTLA-4 inhibitors (e.g., ipilimumab, tremelimumab) alone or in combination with other anti-cancer agents and those who have discontinued treatment should not have the influenza vaccine if < three months. 8. Patients on clinical trial protocols should continue to follow instructions based on their specific protocol. 9. Families and care providers of cancer patients should be encouraged to consider receiving an inactivated influenza immunization if not contraindicated. The live influenza vaccine is not recommended because of the high risk of influenza viral shedding.
  4. So far I have not had any eye related problems after 17 Durvalumab treatments. I had an eye exam just about 6 weeks ago, with no vison changes and no concerns noted by the Ophthalmologist who I have going to for about 10 years. Before the exam, I made her aware that I had cancer, had went through Chemo and Radiation, and was currently in immunotherapy. As in the past I have had eye infections about every year or two, she took a close look at both eyes and said everything looked fine, so it appears that I may have escaped that possible Durva side effect (so far).
  5. All (or Anyone) - I am curious, for those of us that have lung cancer, between the cancer itself, the fibrosis that develops due to the radiation and any dead cancer tumors due to the chemo, radiation and now the immunotherapy, it obviously will effect our lung capacity. My ONC never, nor any of his nurses, ever checks my Blood O2 levels with a Fingertip Pulse Oximeter. (I did request the PA do it once, which she did, but I could tell that she was a little annoyed as she had to go find one). I would think that they would be monitoring O2 levels as it's quick, easy and cheap to do so. Does anyone routinely have their checked as part of their meetings with the ONC's? IF not, maybe one of the medical professionals on here could explain a possibility of why not. Just curious. (I have a finger O2 Oximeter on order so I can monitor O2 levels myself). Thanks -Ron
  6. Charles - pH test strips are on order so I can at least start monitoring my urine ph levels. Before I try to buffer it, I want to get a baseline level established. As I have been on multiple heart meds for years, my Cardiologist has me taking Pantoprazole Sodium Tabs which is a "Proton Pump Inhibitor" that reduces stomach acid. That in turn increases the pH in the stomach, so before I start "buffering" with a sodium bicarb drink, I want to see where I am first. Thanks for the idea and I did read the studies on the subject that you referred to. I also read about the studies involving curry powder and cancer. I don't believe there was any definitive conclusion regarding the curry powder and cancer (except for in a petri dish), but we all have to eat, so why not add curry to our diet. Thanks again - Ron
  7. Tom G - Thanks for the dry mouth tips, the Chloraseptic sore throat spray in my mouth before bed certainly helped. I also purchased some mint flavored dry mouth tablets that you let dissolve in you mouth. Those help some as well. -Ron
  8. Charles – Your Jamaican Style Curry Chicken sounds very good and I will give it a try soon, but likely minus most of the habanero pepper. With the dry mouth that I recently developed (likely due to the Durvalumab per the ONC), I can barely stand anything spicy in my mouth. Until recently the spicier the better but I made chili last weekend with only limited amount of hot pepper powder and I can barely put it in my mouth. Everyone else claims its "mild". I do like Thai Curry, so I will definitely give the Jamaican-style curry powder a shot. Thanks -Ron
  9. DFK - I received a CT (w & w/o Contrast) as part of the initial diagnosis. This was followed by a CT Guided Lung Needle Biopsy, followed by an EBUS, followed by a PET Scan, followed by a Brain MRI, all completed before starting the Concurrent ChemoRadiation Treatments (34 Radiation Treatments and 7 Carbo/Taxol Chemo Infusions over a 7 week period). I then had a month off and then a CT Scan (w&w/o contrast). Then I started Consolidation Chemotherapy consisting of 4 Carboplatin and/or Taxol Infusions over a 5 week period. Then I had another month off followed by another CT Scan (Chest, Abdomen & Pelvis). With continued regression and no new tumors, two weeks later I started the Durvalumab treatments. I have now completed 17 Durvalumab Treatments so far and am scheduled for #18 next week. I had a CT scan every 3 months during the Durvalumab therapy. I am scheduled for another CT and Brain MRI for August 23rd and am scheduled to complete my insurance "pre-approved" 24 Durvalumab Infusions in late October. *I did have to stop the Durvalumab treatments for all of December 2018 to allow my ALT/AST Liver Function Test results to return to normal. They jumped high enough to withhold treatments, but not to permanently stop treatment. I resumed Durvalumab treatments (Treatment #3) on January 4th this year right after a CT scan and blood test on January 3rd. During the treatments I have always had a blood test every two weeks, but they didn't start checking the TSH level until late May this year and by that time I had hypothyroidism with a TSH level of 44. I am now on hormone replacement meds and the TSH levels are slowly dropping. I was told somewhere along the line that I could have CT's every three months, a Brain MRI once a year, and a PET scan three times in a lifetime. The CT can be more frequent if deemed medically necessary due to problems or side effects. I was also told that a PET scan during treatments (Chemo/Radiation and Immunotherapy) would be of little value as everything would light up. True or not IDK, but that was what I was told by the Med ONC. It was the Rad ONC that told me that insurance companies limit the PET scans to 3 per lifetime. I initially saw my ONC once every 2 weeks (a day or two before the infusions), but now am seeing the ONC once every 4 weeks. During the treatments day w/o seeing the ONC, another ONC reviews the blood test and clears me for an infusion that day. The lab is on-site and has a quick turnaround with the exception of a few tests such as the TSH, T3 & T4 tests which take a day or two. Never had any bio-marker tests yet as my ONC will only order if there are indications of progression and/or if treatment is stopped due to high enough grade side effects. -Ron
  10. Bob - Like Opal, and I am sure many others here, I thank you for starting and keeping this "Durva Club" active. It is now one of my favorite places to visit when online and one of the ones I check first. Although I also do not get copies of the actual scans but the CT Scan readings and interpretations by the Radiologist MD are posted (normally by the next day) where I can access and read his/her report. Sometimes I get to them even before the ONC. Normally the ONC offers to pull the actual scan up and show them to me, of which I usually take him up on his offer. Obviously looking at it tells me little or nothing as I can barely tell whet I am looking at so he has to spend most of the time pointing out things. In the past I did teach myself to read my own EKG's after all my heart issues, at least enough to see if it looked "normal", but the CT, PET and MRI's are way too complex for this Mechanical Engineer to comprehend. The EKG techs didn't much appreciate me wanting to see my EKG strip before the Cardiologist, but normally relented and let me take a peak. Normally the Cardiologist walks in and tells me that my EKG looks good but that I am still in A-Fib, and I tell him I know, I already checked the EKG. By the way, my Cardiologist is by far the best doctor I ever met, and if he told me to go stand on my head in the corner, I would do it. So if anyone is near central Ohio and needs what I consider a great Cardiologist, contact me and I will pass along his name. Rather than just go along for the ride on this journey, I want/demand to be an active participant in it and with my treatments. I imagine the Doctors and Nurses deem me as sometimes a difficult patient, but my ONC says he appreciates my direct involvement, questions and input. (I even was asked to proof read and comment on a chapter in book he is writing). I do listen to what he says, and then the questions flow and I tell him what I think. Even the Infusion Nurses know that before I will let them start the IV, that I will want to personally see the lab results first. Just telling me that they are good to go, is not sufficient, so they now just bring me the printout along with the IV. Having now have had 28 infusions (Chemo & Immunotherapy) I know all the Infusions Nurses on a first name basis and they know me. I am always polite and respectful to them, but that is a two-way street and that I expect the same. Anyway thanks again for this forum. AND please do keep us posted on the post-Durvalumab events. I am not far behind you and that is starting to weigh heavily on my mind. The wait and see approach bothers me a little as I have always liked to be pro-active and plan things ahead. -Ron
  11. Charles - I appreciate your comments but although I do like Frosted Corn Flakes (as my waist line indicates), I am not too sure about having a corn flake infusion/injection. 😁 However I am intrigued regarding you "buffering your ph levels to 8.0 to 8.5 with sodium bicarb treatments orally and directly into the lung with breathing treatments mixed and administered (by you) through your "atomizer" for a half hour per session at a mixture of 2 tsp S.B. to 1/2 cup of distilled water". I may just look into this and consider it. At the very least I will check what my pH levels are. Looking forward to Durvalumab treatment #18 in one more week, but dreading the CT and even more so the MRI that are scheduled in late August. I am mildly claustrophobic but have leaned to handle the CT, but just the thought of being in that MRI machine again makes my heart race. The first time I was so overwhelmed with everything that was all of the sudden happening to me involving the cancer, that I managed to make it through the MRI (barely, and with classic rock music playing to dampen the noises the MRI makes). The ONC did prescribe a sedative to take before the next MRI so I hope that helps. Thanks again for your input, comments, and information, I, as I am sure others, appreciate the time and effort you put into your posts and I bet your "memoir book" will make for an interesting read. -Ron
  12. Welcome DFR I am also a "newbie" here, but have been in this NSCLC fight for almost 16 months now. It's been a long and sometimes difficult journey, but when I start to get depressed I just remember that I am not the first nor the only one to fight this fight (as evidenced here). I am thankful for all the research that is ongoing and for the potential treatments such as immunotherapy that are being developed. I keep remembering that those with this same diagnosis 30 or 40 years ago would have likely passed by now. I know back in the 70's my uncle was diagnosed with cancer (don't know type or stage), was sent to the hospital for radiation treatments and never checked out as he died a few days later before being able to check out. My mother always believed that it was an overdose of radiation that actually killed him so quick. (By coincidence, it is exactly the same hospital that I normally go into now). As far as I am concerned, a great medical staff there and good facilities, but their "Business Office" and "Pre-Registration" people leave a lot to be desired as they have only $$ on their minds. My uncles father (my maternal Grandfather) also passed from cancer back in the 1940's. I can't help thinking, and thanking God, that I now have such a better chance at beating this than they did. At the very least, Durvalumab typically increases the PFS so it has given me time to prepare for what is inevitable at sometime for everyone. As soon as I read you posting this morning I thought to myself wow, there is someone who follows their treatment closely and is very articulate. Only later did I read your intro and discover that you are a RN which explains a lot. Apparently we have several medical professionals on here having joined the "Durvalumab club" themselves. I did notice on your post that you mentioned that your Cortisol level is routinely tested as part of your bloodwork. I am curious of the others here, does your ONC test for that as well? I just went back through 18 months of blood tests and did not find my Cortisol or ACTH level ever being tested. I will be inquiring with the ONC my next visit (or I may just call him before hand) and inquire, but I am curious if most people do or don't have that test performed. With just finding out that I should have had my TSH levels checked long before they started to, I am very curious if this one should be routinely checked as well. Again welcome DFR. My first job out of college (back in the late 70's) was down in your neck of the woods near New Orleans. Always hoped to visit the area again and maybe will do so once my treatments are over. One of my bucket list goals is to revisit one more time every state/city that I have ever worked and lived in over the past 60+ years (and maybe throw a few new ones in for good measure). I can hardly wait to retire next year! Ron
  13. I accidentally posted this as a new topic on another page, sorry for the double post.. Thanks ALL for the warm welcome. Can’t say that I’m overly thrilled to find myself here, but very happy that this group exists to share our journeys, experiences and suggestions. A few return comments to those that inquired or sent me a note: Tom G - I appreciate the tips on the dry mouth and loss of taste. I will certainly give them a try. I had made it through the chemo and radiation without that side effect, and it just recently started while half way through the Durvalumab program. Bob – Regarding the number of Infusions: Yes I understand that the approved current standard protocol is an infusion every 2 weeks for 12 months maximum (which works out to potentially 26 infusions), however my ONC stated that he prescribes only 24 in that 12 month period, and that is also what my Medical Insurance Company has pre-authorized me for, specifically 24 Infusions over the 12 month period (or until disease progression or unacceptable toxicity/side effects). My ONC stated that they don’t have enough data yet to determine if the every 2 week schedule is the best one, or would a 3 week interval be better. He also stated that the 12 month period simply came from the trial(s) so that is what was used for the standard of care. He says once more data comes in over time (presumably data from some of us) that they may adjust the frequency, dosage and duration for improved results in the future. Whatever it is, I am grateful for the extended PFS and hopefully a significantly increased overall survival period. When I ask the ONC what is next, I am always told that I was “treated with the intent to cure”, so we have to wait and see. Yes, even my employer was shocked and dismayed when they added up my sick time over the past 18 months which included time off for the lung biopsy, the CTs, PET and MRI, the EBUS, the chemo port surgery, the Radiation Treatments, the concurrent and then consolidation chemotherapy, numerous blood tests, and now the immunotherapy infusions, only added up to 240 hours over a year and half period. My company (a Fortune 500 company), with the exception of one HR lady, has been very supportive of me. Tomm – My highest TSH level was 44.03 back in late May. It was the first thyroid test that my ONC ordered after starting Durvalumab infusions last November. Prior to that, an earlier TSH test in March of 2018 (ordered by my Primary Care) was 3.17 which is in the normal range. My ONC knows that I know and he admitted the they dropped the ball on monitoring my thyroid after starting the Durvalumab. Getting hypothyroidism (and in some cases hyperthyroidism) is apparently fairly common and he knows that I know that. I can’t say how many months I was exhausted and continuing to gain weight before they tested me. I was immediately started on 50mcg Levothyroxine and then after a month, the dose was increased to 75mcg. The ONC says that he expects me to end up with a 125 to 150mcg dose being required, but needs to slowly work up to that dose. Meanwhile, after being on the Levothyroxine for 8 or 9 weeks, my TSH has dropped to 34.17. Still a long ways to go to get back down to under the upper normal limit, but it shows a continued improvement since starting that treatment and I definitely feel my energy levels have already increased. - I have never had my PD-L1 Expression taken. I had inquired early on when starting the Durvalumab treatments about it and my ONC stated that the standard of care for unresectable Stage 3A NSCLC was Imfinzi (Durvalumab) regardless of PD-L1 or EGFR-mutation status and that he only orders those tests if there is an indication that the Durvalumab was not working (i.e., disease progression) or if I needed to stop the treatments due to the side effects. So I didn’t argue with him about it. - My latest blood test indicates that my Glucose has just jumped up to 155 after being always in the normal range since the very beginning of treatments, so that is something new that I need to keep an eye on although the doctor and nurses didn’t even mention it as being high. I did see someone mention their Creatinine and HGB levels. My results have always been and still is near the middle of the normal range for those, however my Lymphocyte count has been on a steady decline for the past two months on Durvalumab and is now at LY# = 0.6. Charles – Before starting the Durvalumab, I had read about all the side effects and that they can start at any time (even after the treatments have ended) and be of any severity, up and including death, so I definitely had my concerns. But then I thought, what is my option, Stage 3A NSCLC certainly has a very poor prognosis without treatment, so I just went back to the old saying of “what doesn’t kill you makes you stronger” and decided to proceed full speed ahead. Any new pains or ailments usually gets my attention pretty quick and I bring them to the attention of my ONC. Although I understand that the Prednisone can moderate the side effects if needed, my ONC says that this takes time to act (of which you may not have) and due to the massive doses of it required, it has its own serious side effects and he only prescribes it as a last resort on the more serious side effects and grades. I also have numb and/or tingling toes but that started while I was in the Chemotherapy and still remains almost a year later. I believe that it may be permanent nerve damage due to either the Taxol or the Carboplatin chemo drugs. As far as the Durvalumab side effects, I seem to have quite a few of the more “normal” side effects, but none thankfully (so far) at any level that would have me discontinue my Durvalumab. I did have the AST & ALT Liver Function Tests go high initially but those returned to normal after temporarily withholding the Durvalumab for about 4 or 5 weeks and I haven’t had any repeat scares. I would say the itching was the most prevalent side effect for me and although I was prescribed hydrocortisone crème to help with it, I really didn’t care for it. My ONC then suggested that I take an OTC Claritin (Loratadine) antihistamine pill once a day in the morning, and then an OTC Benadryl (Diphenhydramine) antihistamine pill in the evening to help with the itching. This seems to moderate the itching to manageable levels such that I barely notice it anymore. I just add those two pills to all the others I take daily. I didn’t mention it in my intro but 7 years ago I had a heart attack and had 5 stents put in, and of course if that wasn’t bad enough, I went into V-Fib while in Recovery resulting in the nurses cracking a few ribs while doing chest compressions waiting on the crash cart to show up. Nothing like hearing a nurse to another nurse say ”Oh no we have a problem” and then the whole world goes dark. I woke up with a room full of nurses, technicians and doctors all around me and feeling like I had been beaten with a bat. Quite the adventure! A year later after I had completed my cardiac rehab program, I then suddenly went into Atrial Fibrillation and although I’ve tried cardioversions several times, the normal heart rhythm has never lasted more than a day or two afterwards, so my Cardiologist says that I will just have to live with it as best that I can. It doesn’t really slow me down any or bother me other than every time I get a new nurse taking my pulse or blood pressure, they notice something is amiss and immediately notify the doctors. Due to all this, I take anti-coagulants, blood thinners, cholesterol meds, high blood pressure meds, etc. After starting on the Durvalumab, my blood pressure started to drop to levels as low as 86/58, so my Oncologist, in consultation with my Cardiologist, had me completely stop taking the Amlodipine Besylate prescription and reduced my dosage of Lisinopril by half. Now my BP runs typically in the 110/78 range. Not too bad for an out-of-shape, overweight soon to be 63 year old who is constantly in A-Fib that has Sleep Apnea and who is now fighting lung cancer. I do wonder if the fact that I wear a CPAP every night that filters and humidifies the air that I breath as well as “pressurizes” my lungs has helped with avoiding some of the lung issues that many experience after the radiation treatments and while in immunotherapy. I do get a little congestion after my infusions, but nothing to the level that evens have me consider calling the doctor or nurse. One thing that I have learned while going through Chemo-Radiation, Chemotherapy and now Immunotherapy, is to keep an eye on your blood tests yourself and demand copies of all the results to look for changes from the previous results. Review them yourself and ask questions. The test results will definitely change over time and over the course of your treatments but watch for any abnormalities yourself as well and bring them to your doctors attention. My ONC knows me well enough by now that as soon as he gets my results, he has a nurse call me with them even if they’re perfectly normal because he knows I will be calling him if I see anything out of the normal. Also if you see online discussions on certain tests such as thyroid TSH levels and your doctor is not having those checked, inquire as to why. Thanks again all for being here. - Ron
  14. I would have to say that I also had an increase in forgetfulness after starting on Imfinzi/Durvalumab, which at first I also contributed to just getting older. Is your doctor checking your Thyroid TSH levels? My ONC wasn't until about 2 months ago and then we found out after being tested that the immunotherapy had shut down my thyroid. Hypothyroidism is a fairly common side effect of Durvalumab and one of the most common symptoms of hypothyroidism is having trouble concentrating or remembering things. I can't be 100% certain that it was related, but after starting hormone replacements, I seem to be more aware of things, and certainly have a lot more energy. Just a thought and I am not qualified to give any medical advice, just to state my experience. - Ron
  15. Content moved to under "Durvalumab" Topic - Sorry for the double post.
  16. 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
  17. RonH

    Intro

    Joined this earlier this year and am just now trying to figure out how to post. I was diagnosed with Stage 3A NSCLC in June of 2018. Last year I completed 7 weeks of Concurrent Chemo-Radiation, then 5 weeks of Consolidation Chemotherapy and as of this week (July 29th, 2019) have now received 17 of 24 immunotherapy infusions of Durvalumab. I have my next CT scan and MRI in a few weeks and am hoping for the best.
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