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Robert Macaulay

Durvalumab

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Hi Polly,

I’ve been thinking about you in NY. Please stay safe.   The symptoms you describe could be a routine side effect or potentially pneumonitis, a more significant but treatable side effect.  Call your doctor and let them know right away.  Living in this world there is no such thing as a false alarm, only peace of mind.  Report everything.  It’s not complaints it’s informing the medical team. It takes a little while to make that mind shift.  Hang in there!

Michelle

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Hi Polly,

Great news on left mass and nodule shrinkage. Exactly what effective radiation and chemo are targeted to do.

I also echo Michelle's advice, report your shortness of breath if it is sustained. You know your body better than anyone else and those little nigglings is what needs to be reported. The timing of the initiation of Durvalumab and completion of radiation makes you a prime candidate for possible pneumonitis.

I started to report my shortness of breath and compensatory increased heart rate a month after completion of chemo/ radiation and at the start of Durvalumab. I was diagnosed with pneumonitis 3 months later after being bounced from Cardiologist to Pulmonologist and after another Pumonary Function Test and chest x-ray and CT scan......and I was told it was caught early!!!!! How much more damage would my lungs have sustained had I not consistently reported my symptoms and pushed for consultations. Part of my problem in reporting my symptoms was that I did not look in distress and was not taken seriously, but I pushed and all the tests that took me a couple months to complete all pointed to pneumonitis. 

You're doing great.....a good attitude, some basic knowledge with two uneventful infusions.....you're on your way. 
 

Take Care, DFK

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Thank you Michelle snd DFK. I did tell my drs about the symptoms and she looked at my ct scans and didn’t see anything.  Shortness of breath has subsided and I have an appt with the pulmonologist in April. But I’m not due for another scan until May. 

Staying indoors except for s grocery run or drs appt. New York is eerily quiet. I live near Times Square and have never seen the streets so desolate. 

Be safe everyone 

Polly

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Polly,

How different it must be to have that kind of quiet, especially near Times Square. I'm glad to hear that your treatments have not been interrupted because of the social distancing and preventive measures they have put in place at most Health Care Facilities. Take care, be safe and aware....DFK

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I await to hear about my treatment on Friday. New Zealand going into effective lockdown apart from essential services . Persistent cough at present but concerned about potential conflict of prednisone use and COVID 19 illness . Await conversation with oncologist this week

grahame

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I had my 10th treatment today.  Very quiet!  Greeted at the front door by the health care worker with the mask, gloves and gown with a clipboard.  Had to answer 4-6 questions about fever, symptoms, travel, etc.  If you answer no to all, you are allowed to proceed to your appointment.  I was told later if you answered yes to any, you would not be allowed to enter and advised of your next steps.  
 

My BP was unusually high, I think due to the fact I was nervous about being there.  I told my nurse I really thought hard about whether it was smarter to forgo 1 treatment to try and avoid the virus or not?  She didn’t disagree.  Sad it’s come to that!  Glad our treatments are still essential services, I’m sure they will stay that way. 
 

All be safe, 

Babs

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Went to get the dreaded CT today. Wasn’t worried about it then because I was worried about just going to a medical facility. Now that it’s done I’m a big bunch of anxiety waiting for the results. Don’t think this will ever get better. But #23 on Thursday if all is good and tomorrow is a year since I went back to work. I think I need a medical vacation 

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Good Tuesday to All,

Been thinking about our Durvies here still on their year long protocol, knowing that you are experiencing the challenges of COVID-19 and all subsequent events. In addition to our cancer you/I/we are now juggling doctor appointments and scheduling nightmares for procedures. I just had all my MD follow-up appointments cancelled thru the end of April as well as my 3 month CatScan, and my 6 week port flush that I extended by two weeks, is now on hold till mid May.....and I'm totally okay with all of that. But I'm not okay with any cancer patient having to defer on their treatments. So far I have not heard of any cancer treatments(Chemo/Immunotherapy/Radiation) being postponed. I have heard that some clinical trials have been stopped in lieu of prioritizing utilization of medical staffing and supplies. 

This too will pass but who needs the added emotional and mental stress of thinking any deferment of treatments may be adding the proverbial "another nail to the coffin". I have always said the mind is a horrible victor.....but as long as we know this, our strength and fortitude and hope trumps the alley ways of our mind that will stray to that dark place.

Barb-I think it does get better in time waiting for these test results. At some point, the "what if's leave us" and our worries are mostly about adjusting to our future should we have to take that route. Our knowledge base has made us just a tad more resilient. I'm impressed with your back to work year anniversary. I was retired when my sh*t hit the fan so I was able to wallow 24/7 in my cancer and focus, focus, focus. I'm in admiration of you. Good luck on #23. So close....I'm cheering you on.

Babs-Congrats on finishing #10. The white coat Hypertension is now replaced by the COVID-19 Hypertension? Totally understandable. For what it's worth, my Oncologist, knowing that I was tolerating my Durvalumab treatments, did tell me I could defer on one treatment if I wanted to extend my vacation with my son. He told me that Durvalumab would take 16 weeks to reach a therapeutic level and that it's half life was 17 days and if I missed one treatment, it would not effect efficacy. I did not take him up on it since my pneumonitis made that decision for me. I missed one treatment midway of the 26 doses and it did not seem to matter as the end result was NED. Carry on.

Grahame-Let us know the results of your discussion with your MD on both continuing Durvalumab and Prednisone usage. I know some have been receiving their Durvalumab with 5mg Prednisone daily to squash those side effects that went from annoying to intolerable. The 5mg seems to have made the difference in continuing rather than discontinuing.

So now that my thoughts have been transferred from my NSCLC to Toilet Paper inventory, I wish you all a very pleasant day.

Phew, I'm so relieved:

 

Covid.jpg

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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

 

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Hey Roseann,

Good to hear from you and awesome that you're done with #15 and tolerating it...WoooooHoooo. That is grand. Your T3 and T4 levels will let your doctor know if your slightly elevated TSH will warrant concern and meds. Let's hope not and it's a fluke. My liver tests skyrocketed for a month and my doctor told me to lay off the booze. Like what? I rarely drink and certainly not with all these drugs coursing thru my body. Then the next month, I was all normal again. Let's hope yours is a fluke too. If not, at least it was caught early and there are meds to address it.

Take care, good to hear from you, DFK

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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

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Hi everyone,

Quick question about zinc supplements and durva? Are they compatible?  I asked doc about vitamin C and she told me don’t take any vitamin c supplements. 

Ron H and Grahame, 

i took some prednisone.... my sister has acute asthma and my chest is feeling better. 

Polly 

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Thanks for you input Ron H and DFK, my Oncologist ran the T3 and T4 tests and they both came back within normal range. Yay! I checked the labs myself. I will put in a call to my Primary Dr to make sure I don't need to start any meds, I've had Thyroid issues a few times in the past. Heaven knows I don't want to take another dang pill but we do what we gotta do right LOL!

Dang Ron, don't you just love these idiots! I'm happy to hear you are going to get your meds, too bad you had to put up a fuss and have a hissy fit and all that!

Wishing everyone well!

Roseann

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#25 done with good blood work and some fatigue

When I got to the cancer clinic I was check out before I could get in the building. There are no guests allowed. Something new, everyone was wearing a mask, no smiles from my nurses, no newspaper or mags. Doc said he is not sure I can get #26 if someone in the clinic tests positive for Corvid 19.  All CT's are on hold so no final result (was ned last check). The clinic has 8 pods with 8 chairs each and now there are just 3 chairs in a pod to keep us away from the other patients.

I found out last week that many of the groceries in town allow online orders and pay with delivery or pick at the store, they bring to your car. 

good luck to my fellow Durvies..

Joke #1    I know a great joke about Corona Virus, you probably won't get it though.

Bonus joke...  Day 3 without sports. Found a lady sitting on my couch yesterday. Apparently she is my wife. She seems nice.

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#23 is in the bag. Blood work good. CT says grossly unchanged. Said something about a 3mm nodule in lower right but I think it may have been on a previous scan months ago. I’m not worried because we all know Imfinzi can cause weird stuff. Oncologist’s office was strange-very few patients and very spread out. Hope all are well during this weirdness. Not only do we have to stay home, the pollen count is so high the cars are green don’t wanna go outside. Enjoy the weekend all. 

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#4 done and dusted . Solo 3 hour trip to treatment centre and back as no support person allowed into unit. Persistent cough and mild shortness of breathe. Doc listened to chest and clear of noise. Bloods all stable and within normal parameters. Still couple months away from next CT scan. New Zealand in strict lockdown. Only essential workers allowed out homes or if have ssentialntravel like mine yesterday. Slow increase in numbers of positive cases but last 3 days been almost static . Some people not playing by isolation rules and getting a hard word from either their community or the system

 

Thanks for everyone’s positive approach and goodwill

 

Grahame

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On 3/25/2020 at 8:55 PM, PShsy said:

Hi everyone,

Quick question about zinc supplements and durva? Are they compatible?  I asked doc about vitamin C and she told me don’t take any vitamin c supplements. 

Ron H and Grahame, 

i took some prednisone.... my sister has acute asthma and my chest is feeling better. 

Polly 

Hi there Polly

I just happened to re-read your post about taking the Prednisone. Was that your sisters? I'm glad it helped, but be careful because from what I understand and what my Oncologist told me I can only take up to 10 mgs of the stuff while on Durvalumab, otherwise I have to stop treatment then resume it when I am better from whatever has ailed me causing me to take a higher dose in the first place.

Just be careful and be safe. Durvalumab is the DEVIL at times but will definitely make us better in the long run 😃

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