RonH

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease. 😃

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

Hi Michelle, Looks like I missed your question about the Alk+ Summit in Denver. I had wanted to go this year but my wife is overseas visiting her elderly mother for the summer, and since I no longer want to fly and I didn't want to drive that far alone, I decided not to. Plus I'm fighting the side effects of the Alectinib......fatigue, muscle pain and shortness of breath (to name a few), so I was worried a little about the altitude there. Very grateful that the Alectinib is still working for me after over 2.5 years but between my age, weight and the side effects, I don't get out and about much anymore, so I signed up to attend as a "virtual" attendee. You attending?

Hi Paul, If you haven't already discovered it, there a very active Facebook group "ALK Positive" with thousands of members worldwide that we all have one thing in common, the ALK mutation. Lots and lots of experience and very knowledgeable people in the group. I myself was diagnosed 3A 4 years ago, and my ALK+ mutation found 2.5 years ago. I've been on Alectinib (2nd generation inhibitor) for the past 2.5 years with very good results so far. Best of luck. (The Facebook group is private and only open to the ALK patients and their support partners (spouses, children, etc). - Ron

Just checking in on my friends in the "Durva Club". I hope everyone is doing well and having a nice holiday season. Wishing everyone a healthy and prosperous year to come. The Durva Club sure is quiet these days.....I am hoping that is primarily due to the Durvalumab having helped everyone. I am still during well over in the "ALK+ Targeted Therapy" area. - Ron

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

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

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.

Roseann, Keep after them on the TSH (and the T3 & T4) tests. After 5 months of complaining about shortness of breath and fatigue while on Durva, my ONC finally tested my T4 and TSH. My T4 was down to 3.4 (normal range 4.9 - 12.9) and my TSH was up to 44.03 (normal range 0.178 to 4.53). Needless to say I was not a happy camper for not being tested sooner. The ONC has been slowly (and I do mean slowly) increasing my thyroid meds starting at 50mcg per day and working its way up over the past 10 months to 150 mcg. Just had another TSH test two weeks ago and my TSH was still at 18.6 although the ONC says my T4 was about normal (not 100% sure that I believe him as I do not see any T4 test results in the lab report, but the free thyroxine index was about normal). He however did bump up my Tirosint dose to 175mcg per day. Of course I had just received a 3 month supply of the 150mcg capsules, so we agreed to just be prescribed 90 days of 25mcg capsules to supplement the 150's figuring that was the economical thing to do. Of course that confused the hell out of ExpressScripts who promptly put a hold on the prescription and didn't bother to contact anyone. Online it said that they were processing the prescription and to check back in 24 hours. I checked daily for 1 week only to find out that was BS, it was really on hold as I found out this week. I feel a little sorry for the customer service rep and their pharmacist that I finally spoke with after being on hold for 45 minutes and explaining the situation 3 times before they comprehended that 150 + 25 = 175, and that I was saving them money. Then being told that I could go get it filled quicker at the local pharmacy was the final straw. My response was "so ExpressScripts is officially recommending that an insured customer with advanced lung cancer who is already respiratory compromised go stand in line at a crowded retail pharmacy in a state with stay at home orders in the mist of the COVID-19 pandemic?" Needless to say, my prescription is being express delivered to me tomorrow. There are some very fine medical professionals out there, but you have to advocate for yourself and keep an eye on what is happening. -Ron

Michelle – I had remembered that you were also ALK+ but that you don’t do FB. I do routinely read the 5 to 10 posts a day on the ALK Positive “private” Facebook page that has almost 2000 members. It is quite an active page and very “international”. It’s very informative, sometimes to a point well above any possible comprehension by a non-medical person such as myself, but it is interesting to hear about what the various standards of care are in other parts of the world. Just in the past few days there have been posts from people in Russia, Sweden, Malaysia, UK…and the list goes on and on. The Admins of the FB page are quite knowledgeable regarding ALK+ NSCLC and several have direct contact with the countries top Oncologists and Researchers. Since you mentioned the ALK Summit in Denver this summer, yes I am considering going. I would certainly like to hear what Doctors such as Lin, Lovly, Camidge and Shaw have to say on current research. There is also talk about having discussions on ST and LT disability as well as Medicare, etc. Yea I kind of figured that the Insurance company that handles my employers LT Disability Program would be difficult to deal with and that I would see strange cars parked outside from time to time. Plus part my company's program is that you also have to apply for Social Security Disability at the same time, and appeal it if denied, and then they deduct what ever you get from Social Security from what the Insurance company pays out. It all sounded like a big hassle. I was planning a road trip out to El Paso anyways to visit an elderly cousin this year, and although Denver is not quite in the same neighborhood (but it is in the general region), I may just add a week onto my trip and attend the Summit first and then spend a few days in the Rockies as well as stop by Pikes Peak on my way south to El Paso from Denver. I’ll probably make my decision on how my health as well as my CT results are in March and then again in early June, but at the moment chances are good that I’ll be there. Sorry to the Durva group for this off topic posting! Later - Ron

DFK - Thank you for inquiring. And congratulations on the NED. Enjoy your west coast vacation, you deserve it! Yea, I am still lurking about and checking on the Durva Club members and keeping all of you in my thoughts. I've been kind of silent with nothing new to post but do read every posting in this Durvalumab group. So happy the read of some of the NED results with the Durvalumab treatments. I see there are a few new members here so welcome to them from a former Durvalumab patient with 18 infusions under my belt until after having a reoccurrence and one new local lymph node involvement and then finding out that I was PDL-1 Neg and ALK+ (confirmed CT/PET/Lung Needle Biopsy/EBUS). From what I understand, since there was no progression elsewhere I am still classified as a Stage 3A. As I reported last December, after 6 weeks of being switched from Durvalumab to a TKI (ALECENSA - [Alectinib]) due to the ALK+ mutation, the December CT had indicated a possible small effusion and a possible slight case of pneumonia at which time I was placed on antibiotics. At the begining of January I had a X-Ray to check on that which resulted in the radiologist reporting no changes to the malignancy, but also no indications of an effusion or pneumothorax. I am scheduled for my next CT in early March. It is still a struggle to get my ONC to remember to order Thyroid tests along with the other monthly blood tests/port flush. After reminding him last month that I likely still had elevated TSH levels and being told that that it had dropped off the radar, it was finally tested again several weeks ago, with a TSH level result of 16. It's been almost a year now of slowly increasing my dosage of Tirosint (Synthroid) and I've only dropped from a high of over 44, down to 16. Getting more than a little impatient with the slow pace of treatment, but at least my T4 levels have just now risen back up into the normal range. His opinion was that the TSH level is trending in the right direction. My response was that I would hope so since it has been nearly a year! My latest "discussion" with him was why he has never, not even once, had my CPK levels checked. He started to say it wasn't necessary until I whipped out the info sheet on ALECENSA which states that it should have been checked. Long story short, it now WILL BE checked in early March. With the cost of the Alecensa, I hit both my yearly deductible and yearly max out of pocket within the first two weeks of January, so I told him that I was having this and any other test medically justified test that I wanted whether it was there or through my PCP. One thing that I've learned from all of this is that you have to learn as much as possible from others (like in this forum) and then advocate for yourself. I do have to say, although I, like many of you, I suffered through some of the many side effects of Durvalumab, but I can also say that the side effects of the Alecensa are no picnic either. Other than taking 8 capsules a day, primarily my main complaints are with the constant fatigue and shortness of breath after any exertion at all. Of course the weight gain side effect also doesn't help either of those issues either. I am becoming very impatient about getting the results of my next CT as I am curious if this TKI (at about $15K per month) is helping or not. Unfortunately unlike Durvalumab, Alecensa is not a possible cure as it only delays progression for some people until such time that the beast mutates again and finds a way around that medication. I guess luckily when that time comes, there is a third generation TKI now available that works even better for many patients. I guess we'll see. In other matters, I am still working full time, but giving either retirement or going out on sick leave and then LT disability some consideration for this year. I probably will if I progress over to Stage 4. I don't mind the work (office work) except for maybe working with some of the millennials, but I dread the walk between our parking garage and our office building everyday. By the time I get there I am huffing and puffing excessively at which times it takes 10 minutes to start breathing normally and my heart rate to return to normal. Decisions decisions…. I am sending well wishes to everyone here. Till next time...take care and continue to fight the fight! My thoughts are with each and every one of you. RonH

🙏 Opal - You and your hubby will be in my thoughts and prayers. 🙏

I have been meaning to provide an update of my latest scan, but busy busy at work and dealing with the holidays, plus I am trying to figure out a new "high efficiency" clothes washer that is apparently smarter than I am. Just too many choices and buttons to push! The results from my latest CT were somewhat inconclusive after my first 6 weeks on Alectinib (Targeted Therapy for ALK+ NSCLC). The primary tumor showed a slight decrease in size with most everything else appearing to be "grossly" stable. (Got to love medical terminology). I did develop some localized air bronchograms and a small pleural effusion. The one small lymph node that lit up on the most recent PET scan was now "obscured". The Radiologist also pointed out an area of either post radiation pneumonitis or possibly pneumonia. My Med ONC believes it to be a slight case of pneumonia so I am now also on antibiotics for 10 days. I had contacted the Onc before the CT letting him know that I had a cold (sore throat, runny nose, sneezing and chest congestion, but he wanted me to proceed with the CT anyway. After 1 week now on antibiotics, I can feel an improvement in my shortness of breath (plus being over the cold helps). I guess that I will take the small reduction in primary tumor size, along with being mostly stable elsewhere as a good result. Have to go back in early January for a chest x-ray to check on things and get updated blood tests as after 7 months of induced hypothyroidism, the Med Onc is still slowly adjusting my thyroid hormone dosage upwards. All other blood tests were in the normal range, or near it. Hope all have a wonderful holiday season. ~Ron