[Durvalumab]

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.

😃

[Durvalumab]

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.

[Newly diagnosed with ALK mutation]

On 4/21/2022 at 10:07 PM, Rower Michelle said:

Hello Paul,

I’m sorry I somehow missed your post. Like Ron, I have the ALK Mutation too.  The initial biomarker testing missed the ALK-fortunately my oncologist had two other patients with ALK and sent my biopsy for comprehensive biomarker testing at Foundation Medicine.  Who knew there was four tests for ALK?   Anyway I’ve been on Alectinib for three and a half years now. 
 

In addition to the ALK FB page, there will be an in person conference in Denver.  I went in 2019 when it was in Atlanta and made many lasting friendships.  
 

The fact you have a low PDL actually is good news as emerging research indicates that patients with a PDL 1 under 50% have a longer response on targeted therapy. 
 

I’m sorry you’ve had to go through all of this but now you’re on a good path! 
@RonH are you coming to Denver? 

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?

[Newly diagnosed with ALK mutation]

On 2/7/2022 at 10:50 PM, PCW said:

 

Hi Everyone!

It’s been 6 months since I posted last. Would like to give a little update. I was diagnosed with stage IV NSCLC more than a year ago. Given 4 cycles of triplets starting in May. After that Carbo was dropped and I was continued with Keytruda and Alimta. Till I developed a skin rash and my ca19-9 kept on rising . My oncologist switched me to taxotere every 21 days as a second line treatment.  Carbo was put back in the regimen about 2 months ago: carbo and Taxotere day one followed by Taxotere a week later . Each cycle given every 28 days. 
unfortunately, my ca19-9 has been fluctuating. The latest reading is 140. My oncologist suspected that it might due to the 11 lesions in my liver(largest one is more than an inch). Meanwhile, all other areas of metastasis seemed to be shrinking including my left lung(started from the right), ileum, sacrum,  thoracic spine area and my left trachea. I have no or very low PDL 1 from my biopsy a year ago. Last week, my oncologist informed me that they found an ALK mutation in  the Guardant test that I took 2 months back. Now the plan is, continue with carbo/Taxotere until my insurance approves the use of Lorlatinib, a third generation AlK inhibitor. So, this has been quite  a year for me, with all the ups and downs with my treatment. By the way hope everyone is doing well! Meanwhile would appreciate any feedback. And I have survived stage iv for more than a year!

              PCW (Paul)

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

[Durvalumab]

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

 

[Durvalumab]

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

[Durvalumab]

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

[Durvalumab]

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

[Durvalumab]

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

[Durvalumab]

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.

[Durvalumab]

11 hours ago, Sillycat1957 said:

Hey all you my fellow Durvies!

Just had #15 yesterday, I too, was met at the door by a nurse with a mask,  6 questions, took my temp, before I was allowed in for my treatment! But I felt it was better to be safe. I was pre screened on Friday so I was a tad annoyed, but what the heck, she was just doing her job. They also were practicing social distancing in the treatment room all patients were 6ft apart. No one is allowed to have a friend/caregiver accompany them until further notice either.

As for my treatment that went off with no problem this time, but when I saw my blood work, my TSH level is 6.4! that's pretty damn high isn't it? I called my Oncologist this morning and they are running additional tests on my blood to check my T3 and T4 whatever that is. I don't like that number it's way over the range isn't it? Anyway I'm waiting to hear.

Grahame, I'm one of the people taking 5mgs of Prednisone to calm down the nasty muscle and leg elbow etc pain side effects caused my Durvalumab. It's helped me tremendously! I hope all goes well with you moving forward, and you can continue getting your treatments.

Babs, Hi, I have skipped 2 treatments so far due to various side effects that I had to see different doctors for, everything turned out ok. Better to be safe than sorry. I have a great team of doctors.

DFK, so happy to see your still hear sharing your experience and hope with everyone!

Polly, Hello, I had some shortness of breath when I started Durvalumab, I skipped a treatment to see if that was why, and it was, so that's one of the reason my Oncologist put me on the prednisone. I wish you well on your journey!

Namaste, everyone, be sure to stay safe and keep those hands washed LOL!

Michelle, your advice is always so appreciated 😃

Roseann

 

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

[Durvalumab]

On 2/22/2020 at 10:00 PM, Rower Michelle said:

Hey Ron-

Good to hear from you.  I know you’re probably active on the ALK FB Page, I’m the lurker with ALK here.  Just a thought on the disability/retirement. I filed for disability and didn’t regret it. I received a list of key phrases from a disability attorney for my doctor to document in my medical record.  Wasn’t a fun process and the private employer sponsored disability insurance company did send at least two private investigators to keep an eye on the house (ugh).  
Social Security was a piece of cake in comparison. 
Alectinib kills my energy too while the scale increases 1 1/4 Lbs per month.  As Bob says Que Sera Sera.   Hope to see you in Denver this summer.  
Michelle

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

[Durvalumab]

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

[Durvalumab]

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

[Durvalumab]

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

[Durvalumab]

DFK - Great news!!!!!!!!!!!!

[Durvalumab]

Tomm, 

Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 

I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 

I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.

-Ron

[Durvalumab]

3 hours ago, DFK said:

Rower Michelle has drilled in me the importance of biomarkers, have you had that done? She also is a proponent for utilizing resources like the Go2 Foundation for assistance when you have questions.

Kate7617 - If you haven't had a biomarker test done, insist on it. I spent 10 months on Durvalumab (18 infusions) only to find out afterwards that I was PDL-1 Negative and EML-4 ALK+, so according to studies and all reports I've read, Durvalumab had little or no hope of working. I have since moved on to a Targeted Therapy, which by the way is no picnic either and in many ways, I am having more side effects with it than I did with Durvalumab. The only nice thing about that 10 month experience is that I became acquainted with some very nice and knowledgeable people here.

[Durvalumab]

On 11/13/2019 at 6:52 AM, DFK said:

What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE.  My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired.

DFK,

I meant to send this earlier....please tell your son that we all say thank you for his service to this country as a Navy SEAL. 

Ron

[Durvalumab]

DFK - Yes the reduction by my Cardiologist in  Metoprolol Tartrate beta blocker dose by 50% has seemed to stabilize the Bradycardia. It still dips to below 60bpm sometimes into the upper 50's, but that is rare and seems to have settled in normally at 68 to 72 bpm. I had read somewhere that some people had to have a pacemaker implanted to stabilized their heart rate while on Alectinib so I was concerned. Right now my biggest challenges, side effect wise, is the constipation, fatigue and weight gain. The good news was that this weeks blood test results all came back within the "normal range". I was a little worried regarding my liver function tests as they were initially very elevated when I was first started on Durvalumab, but this week the AST & ALT levels were in the middle of the normal range after 2 weeks on Alectinib. There was no TSH check this week as the ONC will only order the thyroid tests once every 4 - 6 weeks. Still have the itches on my legs, but after a year of living with them due to the Durvalumab, I hardly even notice it anymore.

Had my fill of leftover "trick or treat" candy today. I read that taking the Alectinib with high calorie high fat content food helps the body absorb it, so I did my part today! Now I am looking forward to Thanksgiving before too long. 🦃

Have a great weekend all.

[Durvalumab]

Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. 

Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋).

The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia.  Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning.

My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. 

Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects!

Have a great weekend all.

[Durvalumab]

3 hours ago, Barb1260 said:

Kleo and Ron-thanks. I don’t want it to spread but I’m not sure what to do. Ron, did you have any spread while you were off?  I would hate to be kicking myself in the butt if that happens. I would like to rewind to last year before all this started to remember what normal feels like. 

Barb, actually comparing my CT just before I started the Immunotherapy (at the very end of October) and my CT after the Durvalumab break (at the very beginning of January) indicated continued regression of all the tumors. They were still shrinking. Most likely I was still benefiting from the earlier chemo and radiation at that time, and there was no effect, negative or positive, from being off or on Durvalumab. Since I now know that I am PDL-1 Negative and ALK Positive, the Durvalumab had little or no chance of working anyway (or so the studies indicate).Basically at least in my opinion (and you know what they say about opinions) is that the cancer was stopped by the CRT earlier last year and I then had about 12 months before recurrence.

Personally, if I was in a lot of pain, I'd probably demand to take a short break from Durvalumab. Depending on which document you read, the half-life of Durvalumab is ~17 days, so it takes weeks and weeks to actually completely clear your body, but and a big but. this is a decision that only you and your team should be making. Even the documents for Imfinzi gives medical guidance of when to "temporarily suspend" Durvalumab treatments. One concern is that the manufacturers guidance for some side effects if the grade high enough that they recommend to "permanently suspend" treatments. I don't see pain as being on the list, but I have not studied it either. I doubt that there is any actual reliable data of what overall effect it has by taking a 1 or 2 month break in the middle of the treatments. As such, I would think that the MD's would tend to err on the side of caution. Perhaps the Med Onc would agree to a dose reduction for several months to see what happens.??

[Durvalumab]

52 minutes ago, Barb1260 said:

I think I want a break from the Imfinzi. Has anyone taken a break to be on steroids and if so, how long?  I’m thinking my onc doesn’t like the idea of a break but if I have to deal with this pain much longer I’ll start getting very depressed. I can deal with pain but it’s my right side and I’m a righty and it effects what I can do with my right arm. 

Barb,

I took a 5 to 6 week break from Durvalumab due to elevated AST and ALT liver function test levels right after my initial two infusions of Imfinzi. I had also experienced many of the other side effects, such as the itching and the muscle pains. I however didn't go on the steroids and just let nature take its course. After the 6 weeks or so and I was feeling normal again (at least as normal as I usually am) and my liver function tests were back to within the acceptable range, I restarted the Durvalumab. The side effects returned again within a few weeks, but at much lower levels the second time and for some reason it never affected my liver again, so I continued taking it.

[Durvalumab]

28 minutes ago, Barb1260 said:

Hey Ron. Glad you’re doing well!  I wasn’t aware CBD without THC could show up in a drug test-interesting as my job does surprise tests also. 

Thanks Barb

I haven't really investigated it, but I did read the other day that many CBD's still have a very small amount of detectable THC in it. Also in the same article, while some of the testing labs use more sophisticated drug tests that can differentiate between the CBD positives vs the cannabis THC positives, many don't, especially those companies that do the random screenings for companies. I personally will err on the side of caution until I retire. When we questioned it at my work, our supervisor said that he didn't know the specifics, but that this policy clarification had just come down through the various levels of management that the employees were not allowed to use CBD products. I suspect that because I work for a large company, that we have many vehicles on the road, many employees that deal directly with the public and then many other employees that work with highly energized pieces of equipment, that the company wants absolutely no risk to or liability from its use. I am sure if we asked and said that it was even prescribed by an MD, that we would be told to go out on sick leave.

[Durvalumab]

On 10/17/2019 at 11:14 PM, Tomm said:

Hi Barb          I got my TSH back down from 139 to 4.4 and that ended my fatigue. I take 150 units of levothyroxine and  CBD caps at night. I'm busy in my garden 5-6 hrs. a day ..fun time tomorrow when I get a CT. The CBD seems to really help with fatigue..it is legal everywhere.

enjoy the season

Tomm - Good to hear about the TSH levels being brought under control! Although mine never reached as high as yours (my max was around 45), I am still working my way up to the proper dosage of levothyroxine. I had over 6 weeks on a 50mg dose, then 6 weeks on a 75mg dose, then 6 weeks on a 100mg dose, and just a few days ago, started on a 125mg dose after my TSH levels a week ago were still at 43. (I have some cardiac issues so need to take it slow on the dose increases). I do have to say the I feel better than I did before the hormone replacements started but I still get fatigued easily. But of course that may be due to the TSH level being high, the chronic A-Fib I have, the Durvalumab I was on, the Alectinib that I just started, or most likely, the extra weight that I carry around (which I claim to keep as I enjoy playing Santa Claus at Christmas). Post chemo beard (after it all fell out) came back mostly white so I aso have that check mark as well, now I just need the red suit (and a sleigh and a few reindeer).🎅

In regards to the CBD, although I would like to try it and while it may be legal, many companies may not permit it. Just two weeks ago it was announced where I work that use of any product containing CBD is not permitted and if tested and found positive, would result in "disciplinary action" up to and including termination.

Hope your CT found good results!

-Ron