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Robert Macaulay

Durvalumab

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Charles,

Reality, yep REALITY, it blows, thinking every 3 effin seconds some days, how my life is no longer mine ugh! Reality.... Courage it's here somewhere, just not today, my chest is hurting too much, it never did before? ugh! Reality...... they tell me at the cancer center if the pain is constant worry, if it comes and goes keep an eye on it it's most likely muscle ugh!

Kate7617

I so understand how you feel about the side effects of Durvalumab, it seems after each infusion I have a completely new whole set of different ones altho they are not as severe as yours are, Bless your heart ❤️ my being depressed and constantly stressed out heightened my pain level and for what it's worth the 5mg steroid as  much as I didn't want to take it nor believe that it would help me actually has, with my foot, leg, knee, elbows, and those muscle pains. However, my middle back C4 and C5 are getting worse that showed on my scan, my neck and now today this new pain in my chest, ugh! So yeah Durva sure does mess with ya! My Oncologist says the same there is nothing else for stage 3a or 3b. My scan showed definate reduction in the size of my tumor and suv uptake which proves the cancer is receding at this point. But like Charles says the REALITY is OMG! this stuff really hurts me, a lot! I'm sorry about the skin cancer too, is that from radiation or sun exposure? Did the doc say why or where that showed up? I just had infusion #7 I think the biggest thing is before my diagnosis I only took 2 medications daily for my 1 pill for Epilepsy, 1 for Migraines, they were not mood altering in any way, The only side effects were  weight loss because the Topamax caused loss of appetite, so I stayed nice and trim. 😃 making my diagnosis for nsclc longer to detect. Anyway my point being I don't like taking medicine my body rebels it seems! IDK that's why I think I get such severe reactions sometimes, I breezed thru some pretty harsh chemo drugs concurrent radiation Cisplatin/Etoposide, but my mind was made up then kill the beast, hardly any side effects! But the Durvalumab is different still trying to wrap my head around it, and it will be that way until my last infusion I reckon. LOL! I hope you make the decision that is right for you Kate, I would do some serious soul searching and praying on it. I have a prayer box my daughter gave me, but yiu can make a prayer bag or a box if you like:

here are the instructions: You can use whatever Entity you believe in God, Buddha, Allah, you get my drift

Prayer box or bag: get a small box write down on a piece of paper what ever is bothering you something that you can't deal with on your own, fold it up place it in the box while saying a simple prayer "God please take this! I can't handle it! You can I can't I think I will let You" Amen If you use a bag, when I did in the past I used a little paper bag and taped it to my refrigerator lol! And when I was asked what it was for i said none of your business! 😃

Tom and DFK great wisdom there too!

As always just suggestions and offers of some hope and encouragement

Take care, keep fighting the fight

Roseann

 

Edited by Sillycat1957
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I'm sorry to read about everyone's bad side effects. 

infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 

enjoy the season

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Tomm

Great news.....keep up the boring. I too have had it pretty easy (comparatively) with minimum side effects and symptoms and am grateful. But I think if you were to ask my oncologist, he would vehemently disagree and might call me the biggest whiner he's ever met. Oh well, if the shoe fits......

Sillycat1957

Good words. I don't think you expressed a single thought that hasn't run through, or more accurately, torpedoed thru our minds. Tis what it is.

I have a little Gratitude shelf at my bedside that is filled with miniature  knickknacks that some of my fav people and family have gifted to me thru the years. My 3 grandkids are represented by MY LITTLE PONIES (Their choosing); Princess Luna, Princess Celestia and Rainbow Dash and I have painted rocks and beach glass and crystals and agate stones and Mario Helicopter and Luigi Ice Flower, Three Stooges Minatures and more.... just a whole hodgepodge of fond silly memories of when these tokens were given to me. And every night, and every morning I look at my treasures and I say a prayer of gratitude for another beautiful and blessed day. I say thank you for all the love, prayers and blessings that I receive. It does lift my spirits and gives me strength to (as Tom would say) stay the course.

Kate7617

You are in my prayers......please reach out and let us know how you are doing and what course if any, you are taking. We all care. Look at the dialogue you provoked ❤️

Take Care All, DFK

 

P.S-Vocal Cord surgery went seamlessly smooth yesterday....thanks to my guardian angels, spiritual and human. Just taking care of this after 6 months of waiting and fretting and worrying  has lifted my spirits and actually lowered my stress levels considerably, which in turn has tamped down my chest pains, my throat pains and headaches.....Dear, dear, stress is a horrible victor.

I am on 5 days of voice rest, absolutely no talking....WHAT!

I will give a full report after my postop check as well as Neck and Chest CatScans to be done on 11/26/19 to check as to  why left laryngeal nerve was impinged. Progression is the worse case scenario, or could be a simple nodule, or maybe no determinable reason at all. For some strange reason, I am okay with it all. How apropro that Thanksgiving is right around the bend. I remain optimistic and thankful.

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On 11/20/2019 at 2:50 PM, DFK said:

Kate7617

I am sorry you have had such a tenuous journey with Durvalumab, and now having to contend with basal cell skin cancer.

I am still learning about options and resources but we have some very smart heavy hitters that may be able to chime in and give you some direction. 

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.

Tom Galli has been around the block and back and is a wealth of information and support.

I can offer you my prayers that you find the support and answers you need.

Take care, DFK

 

Thank you so much for your concern, when I speak to my Doctor about this, he looks at me as if I am from another planet. Of course anyone would want to know if there is an alternative, why wouldn't I? I have never been treated so poorly in my life, and not to mention MSK has gotten paid more than 400,000.$$$ for my treatment, they tell me go to another facility. I have an appointment on Tues, then get this.... Management in MSK Commack calls and asks if it be alright if my Dr there at MSK speak to my second opinion  DR, ( wow! Are these Dr's  kidding?) so much stress! Thanks to all of you for the input, I am looking into every option. Kate7617

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On 11/22/2019 at 7:03 PM, Tomm said:

I'm sorry to read about everyone's bad side effects. 

infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 

enjoy the season

So glad that you have positive results with Durvalumab.  Wow!!! Keep on keeping on! Kate7617

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Thanks to everyone for the input and for all the prayers! Going to a 2nd opinion, and going to ask about biomarkers and such. The Doctors that have been treating me act as if I am from another planet. Never been treated so poorly in my life! and then to put the icing on the cake, my NOW Dr wants to talk with my 2nd opinion Dr, Yikes!!!! and that's after my NOW Dr seems to find the only solution is to watch me carefully on CT scan every 3 months, WHAT?????? Really is that all there is to offer me? I sit here shaking my head, 400,000.000 $$ LATER, guess I can't get Durva so I get the boot. No more money, terrible to think that way, only I have good reason to believe that. God Bless us all and keep fighting for life! Kate7617

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Kate7617

Thank you for your updates......

Stage 3b can be such a sticky wicket. I too am 3b and when I did my research and found out Durvalumab %’s for curative goal, I was a little disappointed until my Radiologist Oncologist told me that before Durvalumab, and you had no mutation biomarkers, you had nothing except CRT.  She then proceeded to tell me that she has every hope in the world that it would work for me. My oncologist, though very quiet, has expressed the same sentiment, "We are working towards curative".

End result may be true or not but it was extremely encouraging and allowed me to move forward despite some of my irritations with Durvalumab. I will be getting #23 this Tuesday. 

I pray and hope that your second opinion coming up allows answers to your questions and provides you with enough information to best address your concerns and move forward with a treatment plan that best serves you. When healthcare providers throw up barriers to communication and empathy, just keep plugging away. Seems so counterproductive and an entire waste of energy with all that we're contending with but it is our life and we can and will rise above that.

Also, you had mentioned that you sent your medical records to MD Anderson. Did anything become of that?

Take Care Kate, DFK

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DFK, as always

You have such an eloquent way with words! Bet you can also bite a rattlesnakes head off an spit it in someones eye in a minute, too, if the situation calls for it huh lol! ❤️

And yes Stage 3 seems to be the Elephant in the room of Lung Cancer doesn't it..... no one really has much to say about it, it's like a fluke, sorta hmmm we caught this in the middle of too late to be called early(stage 2) and too early to be called late (stage 4)! So normal Protocol if I understand my team of docs before Durvalumab, like you stated Kate7617 would have been CT scans every 3 months, then 6 months, until progression and or recurrence. Because being at this stage and we did NOT have any type of surgery. But new Protocol according to NCI is Durvalumab for 26 infusions or until progression or adverse/intolerable side effects.

Like DFK says, my Oncology team says the same thing we are working towards "curative" at this stage of the game so I'm down with that 😃 I have to trust that I am more than just a guinea pig, I want to be on the side of one of the people that Durvalumab, did indeed do the job it was intended to do, so my mind is working on that so it can happen

Night all, Roseann 

306693068_Medscat.jpg.f3882e41b0306dbff941fd160b1c33c7.jpg 

 

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Oh SillyCat, why did I almost spit out my food with hysterical laughter when I read your opening line.....You got a web cam in our living room? Just asking.....

I know right, The White Elephant, the reticent step child, the ignored long suffering martyr, us Stage 3’ers. And to add insult to injury, top that off with no biomarkers.....scheesch!

Yep, I'm in the game, hoping for a win or another magnificent Nobel Prize game changer. And yes, there is a part of me that feels as if we're teaching our healthcare providers a thing or two about all these new treatments and the new lung cancer. I suppose, not too far back, a Lung Cancer diagnosis was a signed death warrant for the majority. The outliers provided stories rich in hope for survival, but really, statistics do not fib. And sometimes I wonder, how much of this "death sentence" mentality is still carried over with some of our Oncologists despite all the new discoveries in treatments. It was just last week when I very sweetly and cordially invited my Cardiologist to TREAT my darn symptoms even though, he thought them very minor in the scheme of the Big Lung Cancer picture. Nope buddy, you ain't getting off the hook on this one. I have a problem with a symptom that was absent BEFORE my diagnosis, so let’s be a good boy, and compassionately treat me. 

Thanks Sillycat for your prose....you crack me up. And heck, you can’t even pay for a good giggle and belly laugh....priceless.

Take Care, DFK

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Good Wednesday to all.

I am taking a page from Tomm's playbook, Infusion #23 completed yesterday....Uneventful past two weeks, boring with normal labs and no new challenges. YES!

Great news on Vocal cord front.....after five days of not talking, I broke loose yesterday and I have my normal voice back. No squeaks, no pitchiness, no raspy breathy or Minnie Mouse voice. I can talk. I am a little hoarse (temporarily expected) from talking but it feels great to be able to communicate without miming or needing a writing tablet.

Had CatScans today of chest and neck.....Oncologist said to e-mail him tomorrow for results or I can call him. My next appt is in 2 weeks and I told him I'll wait for the results then. For some odd reason, I just want the next two weeks to be drama free. If results are NED, fantastic, me knowing tomorrow or in two weeks won't change that. If there are concerns on my CatScans, I'd rather enjoy my Thanksgiving and find out later what the concerns may be. 

Happy Gobble Gobble Day to all, 

image.jpeg.cd619cba7ced057318ff80926ee05b1a.jpeg

 

 

 

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Good evening all,

Had my appt with my Neurologist yesterday and he is putting me on Gabapentin starting at 300mg to help with my neuropathy, and the nerve pain I have been experiencing. I say yay to that because I have been wanting to stop taking Oxycodone. I don't like the way it makes me feel. However, he did tell me it will make me drowsy at first, but I will adjust, I'm to increase 300mg per week til I'm at 900mg sounds like a lot! But he said I will be able to tell, because my brain is smart LOL!!! I thought that was the funniest thing I heard all day 😃 He's the best. I return in 2 months. Infusion #8 on Monday also see my Oncololgist, I have questions as usual....

DFK.I am thrilled you have your voice back! Good luck on your upcoming scan results 😃

I wish everyone a very HAPPY THANKSGIVING! 

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infusion #17 yesterday, still boring with all blood work in normal range, no side effects. My blood pressure has been going up for a few weeks, is this a side effect?..anyone else? 

 

hope everyone had a good turkey or?

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Hey Tomm,

I had my 8th infusion on Monday, my Oncologist said I'm doing good. Most of her patients on Durvalumab have not been able to handle the treatment so, since I'm just getting it as a maintenance drug, we will continue as long as I am doing good. 

She never says stable, I guess  because my tumor George is still there lurking at 9mm. My side effects are pretty stable now tho, thank goodness!

Thanksgiving was nice 😃 But other than that life goes on Take care

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Tomm and Sillycat,

Good going on the uneventful infusions. I'm totally down for boring and a tamping of annoying side effects. 

I suppose a change in your Blood Pressure whether high or low is something you probably want to monitor and bring to the attention of your health care team should it continue to be out of your norm. I know this is plain ole common sense but I also know that if I don't bring up the simplest changes to my MD, it will not be addressed. They're monitoring for catastrophes and I'm paying attention to subtle nuances. 

I'm no doctor nor expert on Durvalumab but I don't recall any mention of primary cardiac side effects in my readings. I do know that Kidney function and Hormonal Gland changes can affect your Blood Pressure and Durvalumab certainly does have the potential for both Kidney and Hormonal side effects. So yes, I suppose secondary and tertiary high BP's could be a possible Durvalumab side effect. As they say in the biz, monitor for a consistent trend.

Thanksgiving was bountiful, blessed to have most of my immediate family living close by.

Take Care, DFK

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Sillycat    good to hear your doing good with side effects, I don't think Durvalumab is given to you for as a maintenance drug, it is given with curative intent and you are #8 infusions on the way.

DFK  .. I just did some research on my rising blood pressure and found this. 

Heart Problems: Investigating the Cardiac Side Effects of Cancer Treatments

https://www.cancer.gov/news-events/cancer-currents-blog/2018/cancer-treatment-heart-side-effects

My OC is watching this and said he may address it soon if things don't improve. 

take care all...

.

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Thanks Tomm for info.

I agree completely with the article and pushed my Oncologist (gently nudged) for a Cardiology consult upon completion of my chemo/radiation. I was aware of the risks to my heart with chemo and radiation and wanted to be evaluated by a Cardiologist while I was still in fairly good health. Durvalumab was not on my radar for cardiac adverse side effects.

Per classic textbook, 3 months after chemo/radiation, due to radiation pnemonitis and scarring, I developed a rapid heart rate to compensate for my poor oxygenation. I was started on a small dose of Metoprolol, a beta blocker, while my body adjusted to the "new" me. And yes, with my rapid pulse, my BP was higher. All of that is resolved now, 9 months later. My Cardiologist says my heart is just fine and dandy but he sees me every 6 months. I feel secure in knowing should I have any future concerns, he has some history of what my treatments were and how I have been responding to them. 

Thanks for sharing.....Take Care, DFK

 

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Tomm,  sorry I didn't respond about your blood pressure. I did however, read that article before. A gentlemen on the Inspire website posted quite awhile ago, about his father who had only 1 (one) infusion of Opdivo (Nivolumab) immunotherapy died because of an adverse reaction to his heart, he wasn't bad mouthing the drug, at all, he claimed he was an MD he just wanted people to be aware of the potential side effects of immunotherapy. I read it before I started Durvalumab, um, scared the crap out of me! I still don't like the fact that these drugs can cure us but kill or maim us later on down the road maybe Geez Louise! Huh! Oh and once when I had my vitals checked my BP was 155/90 I was so nervous I thought I was going to drop dead right then and there for sure! My BP has never gone higher than 130/80 ever! The nurse got so upset by the way I reacted LOL! He told me to relax take some deep breaths and some other things it finally came down after about 20 minutes. I did not want to have to take another pill. So far I've been ok. I hope your BP levels out.

DFK, my Oncologist is sort of like the mad professor, she says I am in a curative state Yay! But she does consider Durva a maintenance drug. I say if it cures me of this monster I'm good!

Here to fighting the good fight!

 

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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

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Good Saturday morning Ron,

Nice to hear from you and thanks for chiming in on your personal experience with "Cardiac" concerns and follow thru. I truly believe our banter with our experiences are helping others know they are not alone on this journey and provide some guidance for the uninitiated.

There are a few of us here that got CTs recently and are awaiting results. Couldn't of said it better.....hoping for the best.

Take Care, DFK

 

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Hi Ron,

Nice to hear from you! Glad to hear you are still lurking around! I still consider myself a Durvalumab "Newbie"  only had 8 infusion so far. I have to say with the addition of the 5 mg of daily steroids, and my Neurologist adding Gabapentin to my mix of drugs I'm on, my side effects are down to quite a manageable level. My goal is to completely do away with the oxycodone for pain, this Sunday I will cut my 5mg pill in 1/2  and see how that works out.

With all the talk of heart issues, I think I may make an appointment with cardiologist like DFK did to establish a baseline. Both my parents had major cardiac issues and passed away at an early age because of them.

I hope your being on the TKI is doing right by you, I hear so many wonderful things about how people respond favorably to Alcencensa (alectinib) it must be nice to take a pill instead of having to have infusions 😃 I wish you and I and all of us here didn't have to take anything! But we all have this stupid nasty, blasted, disease we didn't ask for, for F**ks sake! But we got, and we are lucky we have the drugs available to us now, that just a few years ago were not. My daughters' father, my ex died from NSCLC in 2000. He probably would have had a better chance at survival, so I'm grateful 🙏

Anyway, enough ramblings, I will pray for a great scan on Monday and keep busy til Wednesday. Please keep us posted on your progress!

Be well and Take care,

Roseann

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Hi Folks,

thanks for all the feedback on blood pressure, I guess no one  is alone here with any side effects. I also have chronic Afib but am asymptomatic for 4 years, I see my cardiologist once a year and with no other health issues  She does not give me any medication. If my blood pressure is still up next month when I see her again that may change. 

I hope all scans are clear and side effect  a memory

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Hello to all, 

There is a lot of information regarding high heart rate in cancer patients after chemo and radiation.  I had mentioned this high heart rate concern in an earlier general post but not a lot of replies so I though I was the rare case but now after some research I know it is not true.  This can happen with just chemo alone. 

http://www.cancer.ca/en/cancer-information/cancer-type/childhood-cancer-information/watching-for-late-effects/heart-problems/?region=ab

I do not currently have blood pressure issues for now but after my 1st chemo I became dehydrated and all of the sudden my heart rate increased and anxiety really set in.  I was very concerned and after discussing this issue with my ONC I had a heart Echo done A+ heart is healthy.  Then after completing my 2nd infusion just two weeks ago Cisplatin/Paclitaxel now I have a higher heart rate at rest 80's - 90's and 120's after exertion.  I feel that my ONC thinks this is all from anxiety but I now know after reading this may not be true... 

We all have different stories but its is great to know we are all not alone in this 

Darla

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Good Wednesday Morning to all,

#24 Infusion yesterday.....uneventful. Labs all normal. Usual annoying side effects present, tolerable and managed with my arsenal. My husband calls my arsenal of potions, my Felix the Cat bag.

I had my Neck and Chest Cat Scans two weeks ago. These scan were ordered to rule out any new or existing tumors that may have impinged on my left laryngeal nerve to cause my left vocal cord paralysis. I specifically relayed to my Oncologist and ENT docs that I did NOT want to know the results until my regularly scheduled appt., which was yesterday. I really really wanted to enjoy my Thanksgiving without my "Cancer" taking front and center stage should there be progression. My last chest scan was in May, 7 months ago.

Results:

Chest: Original Tumor no longer seen, Nodular parenchymal disease has resolved. No gross lesions are identified and no lymphadenopathy by size criteria. 

Neck: No masses or lesions. Vocal cord paralysis could be due to radiation therapy within the chest for patients known right lung neoplasm and subcarinal lymphadenopathy.

In Blessed simple terms: NED. 

Relief, joy, ecstatic gratitude does not even begin to describe how I felt sitting there in my doctors examining room, where as five minutes before, I braced myself for the worse news ever. Instead, I got the best news in this stage of the game, at the nearing end of my Durvalumab.

I inquired as to the possibility of deferring my #25 infusion until January, with the rationale of celebrating the remainder of December without any treatments. My oncologist said YES I MAY. Tears of joy streamed down my face as I hugged this very pragmatic man. I got just a wee bit of a smile from him.

Plan is to have my last two infusions in January, followed by a PETSCAN a month after my last infusion. I also dovetailed Cardiologist, Pulmonologist, Radiation Oncologist appts and Echocardiogram of my heart on the day of #26 Infusion. I followup with my ENT in 6 months. 

Oncologist said my port may be scheduled for removal pending the results of the PETSCAN.

And that my dear friends is in a nut shell, my reachable and foreseeable future, the light at the end of the tunnel, a sanguine postscript to the past 16 months.

History: Dx August 2018 NSCLC Stg 3b. Carboplatin/premetrexed x3 concurrent with 60 Gy radiation x30 over 6 weeks. Durvalumab initiated 2 weeks after last chemo.

Thank YOU all for your support.

Take Care, DFK

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DFK   ..Great news!!  I think you are the 1st person on this site to become NED while getting Durva, anyone else?  Enjoy your time off and thanks for sharing your great news.

DarlaK      Welcome to a great place to learn and teach, thanks for  your information on blood pressure, a good read.

My naturopath has me taking Nicotinamide riboside  for my raising blood pressure and to treat my Afib. It effects your NAD level.

 

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