Durvalumab

[Robert Macaulay]

Opal

There big concern is if someone has serious reaction by having both on the same day they do not know what one to treat.Getting  the flu shot in between infusions should be no concern but i am going to wait till i finish my infusions before i get my flu shot this year.  lol

Bob

[Charles]

Opal,

yes cataracs are a side effect from durva, have developed one in my right eye myself and eye problemws are also a side effect such as vision changes but you need an eye exam to know if it is durva related or age related or diabetes etc..I had to get a brain and eyeball mri scan also and all mine was thyroid related, in other words, durva related.

[Robert Macaulay]

Opal

This is intresting article to read on eye problems during immunothraphy

https://labblog.uofmhealth.org/rounds/ophthalmologists-link-immunotherapy-a-serious-eye-condition

[Opal]

Charles, thanks for your reply and info. I did see opthamologist about a month ago. He confirmed the cataracts and said I can wait if not so bothersome. I told him I'm getting Durva and while he's familiar with immuno not Durva specifically, he said likely since I had cataracts prior to starting his thoughts are its age related. 

I'm sorry you had some harsh side effects. Hang in there!

Bob, thanks for article and link! I played Dr Google but didnt come up with much.  Its a good article and probably if I did not just recently have a thorough eye exam and the Opthomologist tell me my eyes are healthy except for cataracts, I would be worrying and losing sleep.

Definitely something else to keep in mind.

[RonH]

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).

[RonH]

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.

[Tom Galli]

Ron,

Thanks for the report on flu shots and cancer treatment. Can you post this information in a new thread here?

Stay the course.

Tom

 

[Opal]

4 hours ago, RonH said:

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).

Ron, thanks for your feedback. It is good knowing you are at 17 durva treatments with no eye issues. I'm only a few ahead of you and hope I can hold out on fixing the cataracts.

Also, thank you for posting the info on flu shots. I would never have given thought to getting a flu shot the same day as immuno treatment had I not broken out in a nasty, red all over rash. It was different then the "side effect" rash I have now. Hopefully posting these links will help someone else. 

[DFK]

IMAGING GUIDELINES FOR CANCER SURVEILLANCE AND DURVALUMAB INFUSIONS

Good Thursday Morning to All,

For all who answered my query regarding imaging frequency, thank you very much. Hopefully it will be beneficial to current and future participants of Durvalumab.

Barb1260:

You included your insurance coverage of every 3 months for first two years, then every 6 months until 5 years. I can speak only of my insurance which is Medicare, there is no limit for coverage on the amount of imaging that is ordered…….BUT……it is billed under Medicare Part B, so you may have the additional co-pay costs, usually 20%. Fortunately I have a secondary insurance that covers all of my co-pays. Your frequency of Imaging seems to be par with others.

Bob

I am not familiar with Canada’s Medical coverage but your writings seem to indicate adequate and appropriate coverage for your cancer needs…..EXCELLENT.

Tomm

Your Clinic’s standard of care of every three month scans are on par with most Cancer Centers. I read your question of PDL-1, will Durvalumab be discontinued because of progression or new cancer. I came back with zero, nada, negative for any or all biomarkers but that is an excellent question. You may want to utilize the AstraZeneca (Biopharmaceutical Company that produces Durvalumab) support line at 1-800-236-9933. I have called them in the past with questions about Durvalumab that I could not find online or obtain from my medical team. They have been very helpful. If they cannot answer your query immediately, they will get back to you via phone or e-mail.

Ron H

I am sorry your TSH levels were not monitored until your levels were at 44. As I mentioned in a previous post, my Cancer Centers guidelines are TSH and Cortisol levels to be drawn every two weeks prior to  Durvalumab infusions. Also, your thoughts and frequency on imaging tests: Cat Scans, Brain Scans and Pet Scans are again, par for the course. We have the old conundrum; is the cure worse than the disease? Radiation from these imaging tests are a long term concern that needs to be weighed against the value given.

Your post on Pulmonary Fibrosis, pulse oximeter etc. I will post  later how DCLO (Diffusion Capacity Pulmonary Function Test) is your best ally with radiation fibrosis, pneumonitis, emphysema and COPD (to name a few). It’s a simple test. Most of us had it completed in our diagnostic pre treatment phase. But how many MD’s order a follow-up DCLO to measure pulmonary function after radiation? after pneumonitis? during Durvalumab treatments?

Ron H, Tomm, Bob, Opal and Tom

I do not have my pulse oximeter saturation checked in the clinic setting but I have had my own since my diagnosis. I use it to monitor my saturation pre and post exercise and strenuous activites. For example, I ride my bike and at times I push myself probably a little too hard so it helps to know how my lungs are perfusing when pushed. Pre bike ride I have a 98% saturation and 70’s heartrate. After 30 minutes of biking, my usual saturation is 95% with my heartrate in the 140-150’s. I ride for an hour but always do a pulse Ox check after 30 minutes. My pulmonologist and cardiologist are okay with those numbers. Trending my pulmonary function to activities and exercise will alert me to significant changes as a precursor to symptoms and problems…..let’s be proactive.

NCCN-National Comprehensive Cancer Network Imaging Guidelines

This is the Organization that my Cancer Center bases their care on.

“The NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.”

I obtained this information from my Cancer Center when I inquired as to the best practice/standards of care for imaging surveillance after completion of initial cancer treatment. I also inquired if there are any specific guidelines once Durvalumab enters the picture. The NCCN does not have specific guidelines for Durvalumab so I have a return call pending from AstraZeneca.

Per NCCN Imaging Guideline Parameters for no evidence of disease:

Stage I-II (Treatment =surgery and chemotherapy) Chest CT +/- contrast every 6 months for 2-3 years then a low dose non contrast enhanced chest CT annually

Stage I-IV (Treatment=chemo and radiation) Chest CT +/- contrast every 3-6 months for 3 years then CT+/- every 6 months for 2 years then a low dose non-contrast enhanced chest CT annually

FDG PET/CT is currently not warranted in routine surveilllance for NSCLC however, many benign conditions are difficult to differentiate from neoplasm on standard CT imaging and FDG PET/CT can be used to differentiate true malignancy.

Brain MRI is not routinely indicated

DCLO-Diffusion Capacity Test

Diffusing capacity of the lungs for carbon monoxide (DLCO) is a medical test that determines how much oxygen travels from the alveoli of the lungs to the blood stream.  DLCO a good measure of lung disease severity and how well your lungs are perfusing oxygen. The more surface area available to perfuse, the better your DLCO % is, the healthier your lungs are.

My DCLO pre chemo and radiation treatment in October of 2018 was normal at 77%. January, one month after chemo and radiation was completed I was starting to experience a higher than usual heartrate. I had no shortness of breath. In March, along with a higher than usual heart rate, I started to tire easily but still able to meet my responsibilities in the home. Because of my increased heartrate and tiring easily, a  DCLO test was ordered and my result was a whopping 44%. A Cat Scan followed that revealed a Grade 3 pneumonitis. I had no symptoms that would have indicated a Grade 3 pneumonitis. Had it not been for the DCLO test, I might have progressed to a Grade 4 pneumonitis, been extremely symptomatic and been taken off Durvalumab permanently AND incurred much more fibrosis and damage to my lungs. 

After a month of high dose Prednisone, I was able to restart my Durvalumab and my DCLO improved to 49%. I increased my exercise regime with the idea that I am maintaining my lung hygiene and hopefully improving my lung function. My next DCLO is in two weeks ( two months since my last). The doctors said my DCLO at 49% is about par after my 30 treatments of radiation and Durvalumab. I'm hoping I can improve my lung health....we'll see what the numbers will say.

With Gratitude and Blessings, DFK

 

 

[RonH]

Tom G -

Flu shot and Cancer Treatment Guidelines reposted in a new thread per your request. On that posting I also put links to the webpages where the info came from.

Thanks - Ron

[RonH]

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.

[Tomm]

DK

18 hours ago, DFK said:

Fortunately I have a secondary insurance that covers all of my co-pays

DFK ...I'd to know what the coverage is called and who you got it from, I want that.

thanks

[DFK]

21 hours ago, DFK said:

 

Tomm,

LOL, my insurance is called, “ Husband fortunate enough to work and retire from a company that provided retirement health coverage”. I know, I know, a complete rarity. We were and are very grateful.

RonH,

You are wealth of knowledge, thanks for sharing all of your experiences.

Charles,

Made your curry and followed your recipe to a tee (no habanero but our home grown red chilies are pretty darn close).....Stirred in fresh cilantro at the very end. A very easy and delicious dinner.....thank you.

To all current and future Durvalumab participants,

Just a few thoughts:

Tuesday was #15 infusion for me.....uneventful day. Currently, only side effect I have and am experiencing are the "itchies" which is maddening in this hot humid weather, but like others, a steroidal cream and an antihistamine makes life bearable. I have accepted, for the most part, my post radiation fibrotic lungs. I do what I gotta do and pacing myself works. Labs remain within normal parameters. My port after 9 months is fully functioning for labs and infusions. I get the best results from my EMLA numbing topical cream when I apply it 2 hours prior.

I maintained my weight during chemo (3) and radiation (30). Since starting Durvalumab, I have put on 15 pounds over the last 8 months. It is a significant change for me as I have maintained the same weight for the past 40 years. MD doesn't know what to make of it, was thinking maybe thyroid......I think the simplest explanation is that I have become a little piglet and am just eating more and not as active as I used to be.

I have always needed a sleep aide.....been on Ambien 6.25 ER over 20 years with excellent results. The past month, sleep eludes me despite the Ambien. My Kindle has been my best friend and I am knocking off those books that have been ignored. Makes me wonder if it's just me, or maybe an age related thing, or another quirky side effect of Durvalumab.....just saying.

I saw all the postings about the flu shot. Never have taken a flu shot but I received TB testing subcutaneously a week before Durvalumab infusion and again, a day after infusion......no adverse side effects noted.

With Gratitude and Blessings

DFK

[Barb1260]

DFK-I too have gained 15 lbs since this whole adventure began. My thyroid is in the normal range and my eating habits are healthier than before. Doc can’t explain it either. I’m betting it’s the Imfinzi and they just don’t have it as a common side effect yet. Still better than the alternative. Just got to increase my walking miles. 

[Charles]

Ron,

Yeah I know about those long Amazon waits myself not being a prime member either but things usually arrive for me by and by though,  If you have anymore questions just ask okeedoke? I wear a bipap machine myself and know that some medications also "aide" in wierd dreams. But being on hormone replacement therapy and my thyroid being out of whack I can say that the dreams of my "younger aspirations" if you will, nudge, nudge have made appearances from time to time.

 

DFK

so glad you enjoyed the "recipe" ( I sortof feel like one of the Baldwin sisters on the Waltons with their Recipe thing) The wife and I had the variation of it last night with the carrots, potatoes, and celery, it sure makes beef stew taste like Dinty moore's by comparison, Have you tried srirancha hot sauce instead of tabasco, texas pete, or louisiana? It has more of a sweeter, tomatoey flavor but is hotter than all those others and makes EVERYTHING taste soooooo much better

 

Later ya'll

Charles..................

[Robert Macaulay]

DFK

If there is one book that anyone with cancer should read it is this one. One outstanding book on the subject and hard to put down.

https://www.amazon.ca/Emperor-All-Maladies-Biography-Cancer/dp/1439170916

 

Bob

[DFK]

Tomm,

I received a call back from AstraZeneca regarding my query on best practices for imaging while receiving Durvalumab. They needed a bit more information so while I had them on the phone, I threw out your question on PDL1 Biomarker noted progression while receiving Durvalumab and what is their recommended best practice. Just for edification, their responses are tied to their clinical trials. Will relay their responses as soon as I hear.

 

With Gratitude and Blessings

DFK

[DFK]

Barb1260

The thing about the small weight gain of 15lbs......My son put me on a rowing machine and I asked him how long would it take to burn off those brownies I are with lunch....He told me an hour of rowing would do it......I jumped off after 5 minutes. No one should work that hard for a few brownies!! Looks like those 15lbs are here to stay.

Charles

Easy Peasy recipes I love.....my husband appreciated the change 

Bob

Read the excellent book reviews on Amazon for THE EMPEROR OF ALL MALADIES. Thank you for the recommendation. The Ken Burns PBS film-Episodes 1, 2 and 3 are available for free if you are an Amazon Prime member:  https://www.pbs.org/kenburns/cancer-emperor-of-all-maladies/episode-guide

Just a few thoughts

 I lost my friends mother to pancreatic cancer. In mid April they told her she could beat it with chemotherapy and surgery. So she went ahead and had a stent put in her bliliary duct, had a port put in for infusions and started her chemotherapy in June. By July they told her she had a month to live. She passed last night. I don't know all that caused the sudden change in her prognosis but I do know that she became defeated and depressed with the diagnosis and never, not once expressed  her will to live.....just saying

With Gratitude and Blessings

DFK

[Tomm]

Bob I just ordered the book you suggested today .. got a used copy for $3.99.   24,000+ views and counting down to your last infusion ..you have been the scout in this new journey for many of us... Thanks!!

Barb ..  How was infusion #8 on thursday? any new side effects? hope things went well for you

[Robert Macaulay]

Tomm

That might be the best $3.99 you ever spent, and this  thread should reach 25,000 views before my journey ends on Durvalumab next Wednesday the 14th of August.

Now i keep asking myself What is Next, Right now a needed break and then back to Que Sera Sera for the next chapter.

Bob

[Barb1260]

Tomm-#8 was status quo. Nothing new so far. Only 18 more than I can graduate with Bob. 

Bob-I bet you are going to have the biggest smile Wednesday. Can’t wait to hear the outcome of your scans. I’m betting NED. 

[Barb1260]

DFK-sorry about your friend’s mom. I think mental attitude has a lot to do with the outcome. My twin sister passed from NSCLC after 11 months. She gave up as soon as she heard stage 4.  I refuse to give up or give in. I’m stubborn. 

[Robert Macaulay]

Barb

This is intresting post today on thread i follow  be aware of side effects at any time during treatment.

As I mentioned a while ago, I was taken off the Imfinzi due to nephritis....Creatine soared to 3.1... Kidney seriously inflamed; treated for 6 weeks with mega doses of steroids, starting at 80mg per day, down to 10 over about 6 weeks, and then finally none. I am happy to say that the kidney has recovered from its injury...but still oncologist here (CT - summer location) doesn't want me to have any more immunotherapy. The steroids have created all kinds of horrible side effect....dropped foot and now apparently either an ulcer or gastritis...(I have an endoscopy planned for Tuesday to see what's going on... at one point, the docs suspected I might be diabetic (from the roids), but that turned out not to be the case.... just pre-diabetic.... gotta watch that! 

But in all of this.... the good news I am happy to report from the August 8 PET scan is that both lungs are clear. NED. So, the big picture, the big issue has a good story so far..... But none the less.... all my warrior buddies that are on Imfinzi.... keep an eye out for symptoms... my kidney issues had symptoms which I didn't recognize ---- upset stomach and almost complete loss of appetite. Good luck to all still on Imfinizi...I made it to 17 treatments, and clearly that has helped...that's two PET scans (over the past 6 months or so,) that have been NED. God bless you all and keep you safe.

https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/?page=last#replies

Bob

[Tom Galli]

Barb,

Stay stubborn and...

Stay the course.

Tom

[Tomm]

Robert..

enjoy the rest of your journey