RonH

Hi Mike, As a former Durvalumab user, I wanted to ask if you had your biomarker testing done before starting on the Immunotherapy? I too had the chemo and radiation and was then started on Durvalumab. After receiving 18 infusions, a CT/PET indicated a possible progression, so my ONC had a lung needle biopsy sample sent off for Biomarker testing. This testing confirmed that I was PDL1 negative, and ALK positive, so the Durvalumab had little or no chance of working. About the only good thing from the Durvalumab treatments was that I got to meet many great people here in the Lungevity Forums. Eighteen months ago I then switched to an oral Targeted Therapy drug, Alectinib. It has its own unpleasant side effects to deal with, but not quite as many as I had with Durvalumab. Just saying that if you haven't yet had the biomarker testing done, you should discuss with your Oncologist about doing so. Best Wishes. -Ron

By all means get a LDCT. Two and a half years ago, my PCP had me get one. I had one two or three years before then and all was clear, but I went ahead and had another which lead me to being diagnosed with stage 3A NSCLC. While not a great diagnosis to receive, especially since I still had no symptoms, its still a lot better than waiting for symptoms to appear and being found to be Stage 3B or Stage 4. Just saying the earlier you find out, the better the likely outcome.

SteveD, It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

Hi Jim. As others have noted, there is a specific forum for the Durvalumab (Imfinzi) users. I've been a member of the Durva Club for well over a year, in fact almost two. Although not currently quite as active as it had been at one time, if you read through all the posts, you will find a lot of useful information (and encouragement). I myself after the chemo and radiation I was started on the Durvalumab. However after 18 of the 26 planned infusions, a biomarker test of a biopsy tissue sample determined that I was PDL1 Negative, and had the ALK Positive gene mutation, for which the immunotherapy meds provide little benefit. Therefore I was switched from Immunotherapy to Targeted Therapy and so far appear to be having good success with that. I only mention that because if you have not yet had biomarker testing performed, I would highly suggest discussing this with your Oncologist. In the meanwhile, you'll find some mighty fine people here in the Lungevity Forums and especially in the Durva Club. Ron

I see a lot of new names here and not many of the old "Durva Club" members which I hope is a good sign that Durvalumab worked for many. I did do a member update elsewhere in the Lungevity forums, but I wanted to post here as well as I spent so much time here over the past 2 years and met so many great people here. I still stop by here from time to time to check on you all. I would name names, but I don't want to leave anyone out because so many have been an inspiration and provided support, even during those "dark times". You know who you are! My Update: Diagnosed NSCLC 3a in May of 2018 with initial treatment being Concurrent Chemo/Radiation which was then followed by Immunotherapy. After 18 Durvalumab Infusions my CTs indicated probable recurrent cancer in main tumor and possible additional lymph node involvement/progression. Due to indicated likely progression, the Immunotherapy infusions were stopped. From subsequent NGS Testing (Tempus) of a biopsy tissue sample I discovered that I was PDL-1 Negative and EML4-ALK Positive. In October 2019 I started Targeted Therapy with Alectinib. Having had several CT's Biopsies, and PET Scans since, each indicating less indication of progression, the findings of my latest CT last week now read: No convincing signs of recurrent or metastatic disease in the chest. Postradiation fibrosis of the right upper lobe as described previously noted surrounding groundglass changes and nodularity of the right upper lobe has resolved and was probably related to postradiation pneumonitis. Mild scarring noted in the lingula, otherwise the lungs are well aerated. No new mass, consolidation, pleural effusion or new worrisome nodularity. A great 64th birthday present! Hope all are well. RonH

First of all I would like to sincerely thank everyone who messaged me regarding my last post. Secondly I would like to apologize for not responding back sooner, however between the March CT Scan results that my ONC implied showed probable reoccurrence in my right lobe and likely progression to additional lymph nodes, and then being told that in his opinion that I should seek a second opinion consult elsewhere on possible treatments going forward, including clinical trials, sent me to a very dark place in my mind. It was somewhere that I have rarely ever visited. As a result, I just needed some serious alone time to get my head screwed back on straight. Suggestions and words of encouragement were deeply appreciated, but I needed to work through it all in my mind. Since then, I have met with the second opinion ONC who had me have a new PET Scan, followed by a Bronchoscopic EBUS fine needle aspiration of both the primary tumor location and several of the lymph nodes. Of course in the middle of this, the hospital initiated a policy that anyone having a pulmonary procedure done must have a COVID-19 test first and it be negative. I never realized just how far back someone could actually insert a swab into your nose. It felt like it was coming out the back of my head and actually made my eyes water! I can guarantee that I've never my finger or anything else that deep in there.😆 The PET scan results were pretty unremarkable. IMPRESSION: 1. The previously noted nodular opacity in the right upper lobe has decreased in size and FDG activity with current metabolic activity slightly above the blood pool. Since the prior PET/CT scan, there has been interval increase in size of right suprahilar consolidative opacities with mild associated FDG uptake. This is favored to represent post treatment/post radiation changes although evaluation of underlying malignancy is limited. Continued attention on follow-up imaging is recommended. 2. No definite evidence of FDG avid distant metastatic disease. The Pulmonologist debated whether to perform the EBUS with sample being taken from both the primary tumor and the lymph nodes identified however the second opinion ONC wanted tissue samples to send off to CARIS for more in-depth biomarker testing. The biopsy remarks from the Pulmonologist Report states: "Lymph node and right lung biopsy are both negative for cancer - this is good news. I think we can continue current therapy and monitor. This suggests this is mostly scar tissue, not progressive cancer." I have a videochat meeting with the new ONC this Friday to see what she thinks. My normal ONC is conservative and says that the EBUS aspiration may have not taken samples from exactly the right spot so although preliminarily findings look good, there is a possibility that they are not. I will update again once I hear from the ONC and what the plans are going forward, but at least things are not as bad as I thought they may be. Plus I found my way back from the dark side. Thanks again to ALL. I sincerely appreciated the thoughts and suggestions, they truly helped me when I was at my lowest. Ron

So very pleased to hear of those having or nearing completing their time in the Durva club and with so many resulting with a finding of NED. Wonderful news and truly an inspiration for many that this gives hope to. A sincere happiness for all of you. My updates: After my last CT Scan in early March indicated probable reoccurrence/progression of a tumor in my right upper lobe, and a possible new tumor in my middle lobe, my Medical Oncologist who has been treating me for the past two years has now suggested that I obtain a "Second Opinion". He arranged for this second opinion at the Ohio State University James Cancer Center as they apparently have better access to, and knowledge of, various clinical trials. I sorta have mixed feeling regarding the second opinion; on one hand welcoming a second set of eyes (by someone with more ALK Positive experience), but on the other hand, sort of a feeling that I am getting dumped as a lost cause. But being as stubborn as I am, and not willing to give up, I went ahead and met with the second Medical ONC. After the initial consult, the new Med ONC says that I might fit into one or two clinical trials, but I will need another Pet Scan, Lung Biopsy (EBUS) and an more in-depth biomarker testing completed first. (I previously had the Tempus Biomarker test that found my Adenosquamous NSCLC to be Alk Positive and PDL-1 Negative). For the time being, I was advised to continue with my Targeted Therapy TKI Alectinib. The PET Scan is late this week and the EBUS Biopsy the early the following week. Baring any new covid-19 restrictions before then they will proceed as essential procedures. However due to existing COVID-19 restrictions all my appointments except for the actual procedures have been changed from office visits to video chats. Even my yearly appointment with my Cardiologist this week was changed to a telephone call. I was really hoping to get my yearly EKG before being put under General Anesthesia for the EBUS, but apparently due to the COVID-19 restrictions, it's considered an elective procedure and the EKG cannot be scheduled. My past two EBUS procedures were done under "Conscious Sedation" whereas this time the Interventional Pulmonologist says due to the extent and locations of what he needs to get a sample of, he wants me under General Anesthesia. Also worrisome is that I have several heart stents and am in chronic A-Fib, but have to go off the Plavix and Xarelto days before the EBUS. I guess on the bright side, if something does happen, I will already be in one of the leading Cancer and Heart Hospitals in the region. Gotta to try to find a bright side to things.

Sorry I can't be of much help, I never experienced nausea with any of my treatments, not during the chemo, nor during the immunotherapy nor now with the TKI. In fact I actually gained weight during each. There were a few times I didn't feel quite right, but I would not say I was ever nauseous. But I've always heard not to take the TKI's on an empty stomach, one because the food helps with absorption of the meds and two because it reduces the chance of nausea. I would agree with you, follow what the manufacturer says. I have heard that sometimes one needs to take a short break from the meds to give their body time to adjust, but that should be discussed with a medical professional. I had to take 5 weeks off after about a month on Durvalumab as my liver function tests (AST and ALT readings) went high. After they returned to normal I restarted the meds and never had a high reading again. Like you say, the body system may learn to deal with the meds after the initial shock. Also can't help with the bone met pains as I am fortunate to not have met to the bones. Even if I did, and even though CBD oils are now legal in the state I live in for medical use, my employer has banned them. Since my job requires random drug testing, and termination would be a result of positive test results, I couldn't risk loosing my job and insurance. I do have a retired friend that uses CBDs for pain relief, he says it helps a great deal with his back pain (which is not cancer related). All the best. -Ron

Terry, Good to hear that your meds made it. As much difficultly as I have sometimes getting some of my meds mailed to me, I can only imagine having to get them across international borders, especially with the ongoing COVID-19 Virus. Your wife Sherry probably saw the attached link on the ALK Positive Facebook site, but if not it is a very good paper on the various TKIs available for ALK Positive patients. Hope the link works. https://www.uptodate.com/contents/anaplastic-lymphoma-kinase-alk-fusion-oncogene-positive-non-small-cell-lung-cancer?fbclid=IwAR0G1DwN_TImnsug5GLOHVbn_Ge2i_xrbXuNy0v9Bqo_9DDiKGCjFJaDZ4E#H3 Just be sure to have your local MD keep up with the various blood tests and keep an eye on trends, such as if your TSH is slowing rising, or your red blood cell count is slowly dropping. Not to say that either is a side effect of your meds, but things that slowly crept up on me over the past two years, All the best. Keep us posted. Ron

Yea Terry, sounds like some fishing might be in order while you wait for your meds! 🐟

Hi Terry, Perfectly understand the time zone issue. Regarding the MRI's, it probably varies greatly between patients and cancers, but I've only had two. The first during my initial diagnosis and staging determination in early 2018. The second was over a year later when I showed signs on a CT scan and a PET Scan of progression. A lung tumor that was thought to be eliminated by the chemo and radiation, started to grow again (per a CT and then confirmed by a PET Scan), and a new lymph node became involved (but the original ones regressed). The second brain MRI indicated still no brain metastasis, but the new lymph node involvement eliminated the possibility of stereotactic radiation to kill the lung tumor. So it is my understanding is that the brain MRI's are for initial staging and when metastasis is suspected. If someone also has brain tumors, I suspect the MRI's are more frequent. My understanding is the CT's and PET scans do not work well on the brain, hence top the Brain MRI's. (I truly hate the brain MRI's as I am mildly claustrophobic). When the time comes, let me know and I will let you know how I get through the MRI's. I have CT's every three months, normally chest only. I never heard of anyone saying to avoid milk and milk products but I do know from experience that cheese certainly does not help with the constipation issues. Other than that, that is news to me. In fact, for the Alectinib, they recommend taking it with a high fat meal as it helps with the absorption. I usually have something with cheese or butter before taking the Alectinib. You should check what they recommend with the Ceritinib. My ONC has always advised that time is of an essence with cancer treatments. In fact he said it was up to me, but back in 2018 he recommended that I cancel my vacation plans for the following month so I could start treatment as soon as possible. But we are all at the mercy of the system so we just do the best that we can do, but I wouldn't voluntarily delay things, but I wouldn't panic either over short delays. The risk of getting COVID-19 by traveling now probably outweighs the risk of a short delay with treatments. (Just my opinion as an engineer, not as a medical professional). Later - Ron

Terry - By the time I was found to be ALK+, Alectinib had already been approved by the US FDA as a First Line Treatment in 2017 for ALK+ NSCLC here in the United States. Also as of May 26, 2017 the FDA also approved Ceritinib for first line use here. Therefore for at least myself, the ONC's were already prescribing these second generation TKI's so the clinical trials were already over. (I believe there are some clinical trials ongoing where they combine these TKI's with other treatments to see if that improves survival rates). There is also a third generation TKI available if or when these second generation drugs start to fail. It is called Lorlatinib (Lorbrena). I don't know, but I suspect your ONC and the manufacturer is calling your Ceritinib treatment a clinical trial because it may not yet be approved in Zimbabwe or South Africa as a treatment. (That is purely a guess on my part). Yes I must buy the medicine, but my insurance covers most of it since the medications have become FDA approved and are no longer "experimental". (I still work full time and therefore have decent insurance). The before insurance cost for Alectinib is about $15,000 USD per month. The manufacturer does have a copay assistance program as well, so my out of pocket expenses are minimal now. The manufacturer also has a program to help those uninsured but I am not aware of the details. I am not too sure about next year when I turn 65 and have to go on the government run Medicare program here in the US. Stay in touch. -Ron

Terry- Michelle will be able to provide a better answer, however these ALK+ TKI medications are a Maintenance Medication, not a cure. While the tumors may shrink and even disappear it is not normally considered that you will be or are cured. Typically you must take these TKI's until you show progression, which many will do so after some time period. Some have been on them for years with no progression, and some, only months before progression. Stopping the TKI's will very likely result in a very quick progression of the cancer. The ALK+ cancers also tend to mutate and find a way around the current TKI meds. The good thing about the second and third generation TKI's is that they penetrate the blood/brain barrier and help reduce the possibility of metastasis to the brain. When progression does occur, depending on the progression and where, another TKI may be prescribed, or if we're real lucky, a cure has been found. -Ron

Hi Terry, when she goes to sign up for the Facebook Alk+ page, make sure she identifies herself as a caregiver. The membership is screened and limited strictly to ALK+ patients and their caregivers only. Like I say, most seem to create a new facebook page with very limited info on it, for confidentially reasons I suspect. Although obviously a social media, this Facebook page is tightly controlled and the "social aspects" of it are extremely limited. It is primarily an exchange of medical information, advice, recommendations and experiences. Much of it is so technical that it makes my head spin. Looking at the ALK+ Facebook membership map (once again, placing name and location on the map is strictly voluntary), the closest ALK+ person to you is over in Namibia. -Ron

Welcome Terry, I was diagnosed Stage 3A NSCLC (AdenoSquamous) in the Spring of 2018. After all the chemoradiation, and then being put on Immunotherapy (Durvalumab) for 8 or 9 months and then showing signs of progression, I convinced my ONC to have me biomarker tested. This resulted in finding out that I was PDL-1 Negative and ALK+. I was then switched over to the Targeted Therapy TKI Alectinib. Some side effects such as fatigue and shortness of breath I still have, along with constipation being my major complaint. I also have become very anemic while on Alectinib, and had two recent iron infusions which made me feel much better. A high fiber diet and a mild laxative such as Senna helps with the constipation. My suggestion is to make sure that your ONC stays up with the blood tests and request/demand that they be done on a regular basis, even if you feel good. Some of the things tend to creep up on you and then you find yourself treating other ailments in addition to the NSCLC (Over the past two years due to the treatments, I have developed medication induced thyroid issues as well as becoming anemic). Well enough about me. As Michelle mentioned, there are a few members here that are ALK+ such as Michelle and myself, so feel free to ask any questions. There is a private group on Facebook that is strictly for ALK+ patients and their caregivers. It is a very active group with around 2,000 members, many of which are international but I don't see any members from Zimbabwe yet. Please go to www.alkpositive.org and their private Face Book page for "ALK Positive Lung Cancer". To gain access to the Facebook Page, first go to the www.alkpositive.org webpage. Follow the links to fill out the registration, then within a day or two, you will be granted access to the ALK+ Facebook page. Note that many create a special facebook page first that limits the personal info, but I chose to use my real FB page. Then within 1 week you MUST introduce yourself on the ALK+ Facebook page or your access will be removed. They normally send you a reminder first. This FB page is full of very experienced and knowledgeable people and many of the topics are at an extremely high technical level. Several of the members have direct access to and contact with some of the top researchers and Oncologists around the world. The page has a search function so you can search out various topics of interest that has already been discussed. I will note that they are somewhat quick to tell you to search first, before asking a question that likely has been discussed many time before. Not too sure I agree with this, but I also understand not filling up the pages with the same discussion over and over again. Anyway, if you are ALK+, I do highly recommend joining that support group on Facebook. There are likely 10 to 20 posts every day with a wealth of information. There is also a membership map that you can locate members in your area that are also ALK+. As I mentioned, the group has members from all over the world and I'd say about 50% of the posts are "international". Placing your name and location on the map is recommended, but not required. Anyway, welcome to group and feel free to reach out at anytime. Ron