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RonH

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Posts posted by RonH

  1. For all that routinely post or read this forum, while I hope I am not making a mistake posting it here, but a fellow former Durvalumab member isabelle49 who posted in here several times I believe is apparently nearing the end of her fight and chosen to enter home hospice. You may want to read her update posted in "member updates" over the last several days and send her your thoughts and prayers. Forgive me if I shouldn't post this here, but felt that everyone should know.

  2. Roseann / Kleo,

    My Med Onc had said they same thing early in my treatments, that he believed that going on steroids (or at least the higher doses of it) cancelled out the benefits of Durvalumab  as well as several of the other PD1/PDL1 Checkpoint Inhibitors. Don't know if its true or not but it looks like it may well be. He had told me that if my side effects got to the point where the steroids had to be prescribed that he would suspend or likely completely  stop my Durvalumab treatments permanently.

    Also having to wait for my Stage 3A NSCLC to progress or MET elsewhere before having the biomarker testing prescribed is questionable in my mind as well. I expect that the insurance companies play no small part in some of all this. All I know was that after almost 1 year on Durvalumab only to find out that I was EML4-ALK+ and PD-L1 Negative and that Durvalumab had already been determined to be questionable for PD-L1 Negative patients and actually ineffective for ALK+ cancers, was a waste of time and money. Now I've had a recurrence and MET to another Lymph Node.  (On the bright side I did get to meet some nice people here in the Durva Club and in the LUNGevity Forums in general). I guess I will be joining a very select ALK+ Club as well now. My ONC said today that after 19 years as an Oncologist, that I am his very first actual ALK+ patient. Although he and his CNP supplied me with a lot of information, thank God that there is a ton of information out there on this and a very informative "private" ALKpositive Facebook group that I've also joined.

    I'm starting my Alectinib meds for my EML4 ALK+ Targeted Therapy this evening. Just waiting to see if I grow hair everywhere, develop fangs and claws and then start howling at the moon after taking my first few doses. 😮 Maybe I won't need a Halloween costume for Trick or Treat this year! 😀

    Best to all.

    -Ron

  3. For my fellow Durva Club Members…as promised, my updates:

    I received my actual biomarker test report back today. Although I was told last week that I was EML4-ALK+ on the phone, I wanted to read the report for myself.

    Yes the written report confirms what I was told over the phone, EML4-ALK Positive. There was also a "NFE2L2 p130F Missense Variant – GOF" listed (Whatever that is I'll have to do some reading on).

    There were no EGFR KRAS BRAF ROS1 RET MET or ERBB2 (HER2) variants found.

    For those that Inquired: My PD-L1 Expression is Negative.

    So the wait is on for my Specialty Drug Insurance Company/Supplier to approve and send me my Alecensa (Alectinib). Wow, a 600mg dose twice a day!  The prescription was sent to them and I am just waiting for approval and receipt. Today I had to meet with the Oncology Nurse Practitioner today for "Targeted Therapy Alectinib Training", but to be honest between here on the forums and elsewhere I didn't learn anything new. But since I had to go in for my blood work (including thyroid panel and TSH) anyway why not listen to the NP for 30 minutes.

    Best to all out there. 

  4. Hi Michelle,

    Thanks…yes in my readings on ALK+ Mutations, I ran across your name many times, read most of your posts and saw that you were ALK+ and on Alectinib. Michelle after reading all of your posts, I was going to nominate you as the "Queen of the ALK+ Mutants".

    I spent most of Thursday evening and part of the night reading all about ALK+ mutations and the treatments. Since I had had my EBUS Biopsy Thursday morning I had a nice nap that morning curtesy of the Versed and Fentanyl. Even after I got home, I slept all afternoon so as a result I had plenty of time overnight laying awake to do my reading along with the aid of Dr. Google. I can’t wait to get started, but of course my prescription drug insurance company requires a “coverage review” before approving. Thanks also for the names and links to the various support and information groups. I have been to most and put my application in for the Alkpositive.org as well as their associated Facebook page. I plan to watch a few YouTube videos over the weekend on the subject matter. I am pleased to hear of your excellent results with Alectinib. I do kind of dread the weight gain side effect as I’m one of those people that even gained weight during the chemo and radiation treatments, and then again while on the Durvalumab. Just what I need, another aid in gaining weight! Also I am a little concerned with the effect on the liver enzymes, it was one of the first things that the Durvalumab hit me with and caused me to be temporarily taken off it for 5 weeks last year.

    The results of my EBUS biopsy yesterday surprised the Radiologist, the Med Onc, the Rad Onc as well as the Pulmonologist who performed the procedure with it coming back as malignant. With the small indication size and PET scan uptake SUV barely detectable above the background on that lymph node, all had said that thought it would be found to be benign. Of course it wasn’t, so initially I was a disappointed that I would no longer be considered for SBRT of the recurrent tumor in my lung. Fortunately my biomarker test had came back the day before and my Med Onc sounded pleased with it and also said that it was actually good news and he specifically stated that he would have me started on Alectinib. I of course did a quick internet study on it and it does sound quite promising. As I understand it, it is a 2nd generation TKI. Even the Pulmonologist said the same thing, that it should be considered a good biomarker test result. Although maybe not a cure but it at least provides a good likelihood of reasonable extension of time before further Mets, especially to the brain. Some days I can barely function with what little grey matter that God gave me to begin with, so I can’t afford to lose any brain cells! Like you say, it may likely be best to save the SRBT till later if and when I might need it. (Although quite frankly I was looking forward to frying that b*stard malignant lung tumor with radiation just to get even with it for returning!)

    To those out there that their Onc has not had biomarker testing done, if I was you I’d nudge the Onc to do so. I know that in my case they needed both a tissue sample (from a biopsy) as well as a blood sample to do the testing. Since I was having a biopsy anyway due to the probable recurrence, the Onc felt it was finally time to have the biomarker test. While I have not compared the various biomarker companies that perform these tests, my Onc used the Tempus xT test kit. There is a quick online form to fill out, and for most insurances it is “out-of-network”, however Tempus apparently will normally approve a $100.00 maximum out of pocket cost to the patients no matter what the insurance company pays or does not pay. For $100 I would have done this long ago and personally feel that it should be done with the very first biopsy confirming a cancer diagnosis. Perhaps the Tempus xT is not the most comprehensive biomarker test out there, but at such a low cost, some info is better than none at all. This is especially true for us ALK+ mutants (approximately 4% of all NSCLC cases) as it was already known that the various immunotherapy meds do not seem to work on us. I do understand that it is all part of playing the percentages, and the doctors go step by step following their normal treatment protocols that fit the majority of their patients, but I wish I hadn’t spent 10 months thinking that the Durvalumab was likely working for me when in reality, it probably wasn’t. I do believe that I have a very good Med Onc and have no regrets selecting him, but I will be suggesting to him (from a patients point of view) that he start the TSH thyroid testing as soon as starting patients on immunotherapy, as well as when his patients have a biopsy done to confirm cancer, and if it is confirmed, that they go ahead and send that sample out for biomarker testing at the very beginning, even before any chemo and/or radiation. Knowledge is Power!

    Anyway, I want to thank all the Durvalumab club members for their support, prayers and well wishes. I’ll be sticking around here and updating from time to time, but I will now also be spending time with "Michelles Mutants".😉 Best wishes to all.

    -Ron

  5. Just another quick update on life after Durvalumab:

    My Onc called today saying that he received my Biomarker test results (EGFR) and that I had tested positive for the EML4-ALK gene mutation. I guess I have officially joined the ranks of the "Mutants" out there. The Onc said that they have had good results on PFS (Progression Free Survival) with a TKI called "Alecensa" (Alectiinib). I still have my Bronchoscope/EBUS tomorrow morning to biopsy a small indication on a lymph node that didn't show up on the PET scan last year, but showed with a very slight uptake this year. If it comes back benign, then a decision has to be made, SBRT on the one tumor in my right upper lobe or to start the targeted therapy. I guess the SBRT has around a 80% success rate, however the Rad Onc's are concerned as that location was already treated with radiation last year during the initial CRT. From my readings it is rare for them to treat the same location twice and UCLA says that they only do it in very select cases. (???). Of course, even if the SBRT is completely successful, there is no guarantee that I don't have some cancer cells floating around looking for a home. The other option is the Targeted Therapy which the ONC says shows good PFS, but is not considered a cure, however it does seem to help prevent/reduce metastasis to the brain. He also says that it also has some pretty significant adverse effects on some people. (Nothing like reading that that 2.8% of the people in the trials had an AE of death - yes I would say that was pretty adverse).

    I guess after  tomorrow I may have several options to consider over the next week. Of course yesterday I spent several hours with the Radiation Techs being fitted for the body restraint and breathing control belt for the SBRT and having 4 CTs done with and without the belt. I didn't much care for that breathing control belt as it felt like someone sitting on your chest/stomach restricting your breathing. I do understand the reason for it to limit the movement of your lungs (and therefore the tumor) during treatment but it was rather unpleasant.  Tentatively I start the SBRT (subject to change) the week of the 14th, for 5 consecutive days. If the lymph node is malignant, the SBRT is out and I'll go straight to the Targeted Therapy (pills twice a day, with apparently extremely expensive pills) the week after.

    I hope be able to get my full biomarker test results from the Onc before too long, but he felt the news about the positive EML4-ALK results was important  enough to call me about and the only result that really mattered for me. Not to mention that when the call came in, I was standing in a middle of a cemetery having just attended a funeral and it was not the most conducive location to be able to question the Onc in detail. No, I do not know what my PDL1 Expression is yet, but as Michelle noted earlier, "“Mutants” don’t respond to Immunotherapy even if there is a high PDL-1 (no one knows why)." so that explains why I am no longer on Durvalumab after 10 months and 18 infusions. I sure wish that all the Oncs would do the biomarker testing UPFRONT).

    Thanks All - I guess I will go do some reading on the above.

    -Ron

  6. As it seems to always be the case, one or two steps forward, then comes a step backwards. The latest today was that my Radiation Onc spoke to her colleagues/practice partners, who decided that they want me to have a EBUS before any SBRT. The Radiologist reading my last PET scan had noted the following:

    Quote

    Metastatic right hilar and mediastinal lymph nodes seen on the prior PET/CT have resolved. A subcentimeter left paratracheal lymph node has increased FDG uptake that is indeterminate but slightly greater than background FDG activity in mediastinal blood pool. The small size favors a reactive lymph node. 

    My Medical Onc was not overly concerned about it when I questioned him about it, but the Radiation Oncologists sure are, so now I have to wait for the Pulmonologist to schedule me for another EBUS with needle biopsy of that node at the hospital, meaning at least another week or two delay. Some days you just can't win!

  7. Roseann,

    For sure one of the most difficult parts of having a cancer diagnosis is the effect on ones mental state. Granted the physical hardships with both the disease as well as the treatments are difficult, but it is so hard to maintain a positive outlook on anything, especially when after a few steps in a positive direction all of a sudden there is a step backwards. In the end, I do believe it is critical to do whatever necessary to maintain a positive outlook and a willingness and desire to fight back.

    Hoping and praying all the best for you and don't ever worry about venting here, that's why we're here, to help each other. By the way, I didn't loose my hair until the consolidation chemo after the initial 7 weeks of concurrent chemo/radiation. There was several weeks where I didn't have a meal without hair falling into it! I was kind of hoping for the Telly Savalas look, but ended up with an uncanny resemblance to Uncle Festor on the original Adams Family TV show. 😆So glad it grew back....even if it is curly now. 🙂

  8. On 9/18/2019 at 10:03 PM, Tom Galli said:

    Ron,

    I’m really counting on stereotactic radiation for you. I am recalling my stereotactic experience and there was concern about previously radiated tissue from my conventional radiation. My doctor told us about the risks and explained that despite scientific knowledge, treatment decisions were judgement calls. 

    If your radiation oncologist shows reluctance, consult another. Eliminating tumors is far better that tolerating them. 

    Stay the course. 

    Tom

    Just a quick update:

    Well I had my consult with my previous Radiation Oncologist (from last year) and she believes that she will be able to use stereotactic radiation for my recurrent tumor. Its about in a perfect location and size for SBRT, in the middle of my right upper lobe and not on the surface near a rib and is also far away from my spine, throat, heart etc. She does want to discuss with her practice partners as well as a thoracic surgeon first before making a final decision to treat or not, but at least I am currently scheduled to be fitted with the immobilization device next week. She has some thinking and calculations to do regarding the number of doses (fractions) she will use due to the same spot being irradiated last year, but is thinking between 6 to 10 fractions over a 2 to 3 week period (not the normal 5 +/- fractions over 1 or 2 weeks). Also I forgot to mention, my Medical Onc told me that there are some indications (not proven conclusive yet) that having radiation treatments while on or have had immunotherapy may kick start the immunotherapy drug again and help it be even more effective. This along with the Med Onc sending my biopsy and blood samples off for biomarker (EGFR) testing for possible targeted therapy treatments in the future puts me in a much better state of mind.

    Thanks all....I'll keep everyone posted! -Ron

  9. 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

  10. 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!!

  11. 29 minutes ago, Kate7617 said:
    • Hi everyone I am a newbie, yet an oldbie, been through CRT and made good progress with those treatments, 30 radiation treatments and 4 Chemo, now I am in IV durvalumab , I had 6 treatments and will get my CT scan with contrast ( allergy) premeds tomorrow, and results next week. Needless to say I have anxiety, and I am hoping that this will allow me some more life here, Having some trouble with nausea  and fatigue ( the new normal), Well I could really use some support, so if anyone can give me that today I would more than appreciate it, and will do my best to give it back. Thanks!

    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

     

  12. 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)!

     

  13. 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

  14. On 9/6/2019 at 9:04 PM, Robert Macaulay said:

    Opal

    My thoughts are the Durvalumab done one excellent job of stopping any progression and they have caught this possible  recurrence at the original site early so i have no concerns there and from what i read there are lots of treatment options for recurrence at the original site.Thinking her plan is to let this settle take another CT then needle Biopsy  followed by pet scan and then hopefully targeted therapy depending on the results, Those decisions are up to the doc and as long as the are giving me treatment i am happy. The break is just fine by me.

    Bob

    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

  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 #%!@. 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. 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

  19. 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!

  20. 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.

  21. 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.

  22. 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).

  23. 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

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