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Durvalumab


Robert Macaulay

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Hi Kate. Well after being off the prednisone and muscle relaxers for a couple of days and getting another infusion Thursday the pain is back. Called the doc yesterday. PA on call put me back on muscle relaxers. Not helping much yet but I’ll give it a couple of days. She said doc doesn’t want to put me on steroids at this time. The X-ray And CT 2 weeks ago at the ER showed absolutely nothing, not even anything that “might” be inflammation. So I wait. I did ask what exactly are the muscle relaxers supposed to do, said it will stop the spasms which is what I have had off and on. I hate this

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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

 

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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. 

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Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.

I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.

I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.

 

Don't ANYONE tell my doc I was Googling again! 🤐

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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.

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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.

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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. 

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Happy Sunday to all,

I argued and argued with my oncologist to NOT take me off of my Durvalumab infusions because of my pneumonitis 8 doses in. He was convinced my pneumonitis was radiation related  (4 months since last radiated). He was also convinced if I didn't tamp it down with Prednisone, I had a very good chance of advancing my pneumonitis to permanent lung fibrosis. I requested a Pulmonology consult. 

I wasn't giving up the argument and told him, "My Cancer has priority here", where as he replied pretty vehemently, "Nope, today it does not". I shut up and with the blessing of my Pulmonologist, I took a 4 week Holiday from Durvalumab reeling on Prednisone. Booked a flight to Hawaii and spent a glorious three weeks with family and friends. Didn’t hurt that I was flying pretty high on the steroids and really enjoyed myself. CatScan after 4 weeks of Durvalumab Holiday showed tumor nothing but a scant shadow with pneumonitis resolved and pulmonary function almost to pre chemo and radiation status. Was or is the Durvalumab working or was it the radiation that got my tumor to disappear....I haven't a clue. But like everyone else here on this forum, I am "tolerating" this wonder drug with a 20-25% chance of working so I may live progression free longer.

Pain is non negotiable. Give me something to address it completely or give me a Holiday from Durvalumab. (Side note, I was diagnosed with slight gastritis, probably from Motrin 800mg usage for my muscle pains, now I use Tylenol). No disrespect to my oncologist but I don't allow him to diagnose me in areas that is not in his realm. I got pain in my muscles and joints, I'm going to ask for an orthopedic referral. I had shortness of breath, I asked for a Pulmonologist referral. I have hoarseness, I got an ENT referral. He thought I may have some esophagus issues, I was referred to a G.I. Specialist. Hey, I even had a Cardiologist consult because my Pulmonologist knew his limitations with my pneumonitis and knew my heart was being overly taxed. 

Durvalumab may be a new drug but immunology and manipulating with T-cells is nothing new. Doctors have resources that are available at their fingertips and specialists/endocrinologists they can confer with, in choosing their best course of action to alleviate you of your symptoms. Though I have specialists involved in my care, my oncologist always has the final say in any treatment plan that is ordered for me. 

Anyhoo, that's my two cents worth of soap boxing today. I'll take the hits with Durvalumab, but I expect my docs to help me along to take the edge off of these side/adverse effects without affecting efficacy.

Oh yeah, and there is a P.S. to all of this. I am forever grateful and humbled by the caring of my entire health team. Every two weeks on the day prior to my infusions, I am baking ferociously so my nurses and doctors get a little treat, a little thank you for pulling me along, for all that they do to make my Cancer life as tolerable as it can be. My husbands says I am kissing their butts and buying little favors. I told him nope, it's genuine gratitude for all they do. As an RN, I know how it all works and it's a tough job to be with patients when they are at their worse and how every health care provider can make a difference. A little cookie or brownie after running for 7 hours without a break or food.....Yep, I know the drill. 

Carry on.......DFK

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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.??

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RonH

A belated heartfelt thank you for Isabelle49 sharing on Durvalumab forum......Elizabeth and I did some PM as we both live in the same area, are familiar with the medical community and most importantly, discussed her grand daughters upcoming wedding on November 9th.

Take Care, DFK

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On 10/20/2019 at 11:42 AM, Barb1260 said:

Hi Kate. Well after being off the prednisone and muscle relaxers for a couple of days and getting another infusion Thursday the pain is back. Called the doc yesterday. PA on call put me back on muscle relaxers. Not helping much yet but I’ll give it a couple of days. She said doc doesn’t want to put me on steroids at this time. The X-ray And CT 2 weeks ago at the ER showed absolutely nothing, not even anything that “might” be inflammation. So I wait. I did ask what exactly are the muscle relaxers supposed to do, said it will stop the spasms which is what I have had off and on. I hate this

It is a very difficult place to be. And I know it first hand, when I get my CT scan and follow up with the Doc I will know more. Muscle relaxers? We know the side effects of the Durval is a great problem, but should it be enough to abandon the whole idea of immunotherapy? What you need to ask the Doc...… What are your expectations for me moving forward with this treatment? That is my question. I am so sorry that you are having pain, I went to a pulmonary Dr to actually be informed, and it helped. Every day is a gift, let's remember that. I honestly believe that the Doc gives a prescription just to say, hey I did something. I shake my head.

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On 10/20/2019 at 6:38 PM, RonH said:

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.??

I agree with that completely, thank you sharing this info, I have asked to have my treatments every 3 weeks instead of every 2 weeks. So far they are not budging on my request. I have concerns that I may develop RA, my brother at 62 died from the effects of RA, and now my sister has RA, is it genetic, don't know, but I certainly don't want to find out the hard way.  Plus the swelling is really a very big problem, now tomorrow I have to go back to my cardiologist, for a heart monitor and sonogram. Ok My life belongs to Doctors and hoping they do the right thing for me. 

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Well I got my break from Durvalumab. Have to see the pulmonologist Thursday to get his input on this pleuritis issue. A little prednisone then back to it on the 14th. The muscle relaxers are to stop the spasms that I’ve had with this. It’s all from the Durvalumab. I’m now getting a little joint pain too. 

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Hi all!

I had my 5th Durvalumab infusion yesterday. Straight up 😃 Blood work first, all ok. Seen APRN this visit, Oncololgist next visit. Still have Oxycodone 5g for pain if needed, I take one tablet before bedtime, I'm also still taking one 5mg prednisone daily for my muscle and joint pain. I still have the middle back pain along with the shoulder chest and underarm pain. I asked again why? APRN and Oncologist both do not know why, they feel it could still be from radiation Good grief man! Does it ever go away I asked, she said it takes a long time, last zapping was 7/1/19. I am allergic to Tylenol and dr doesn't want me taking NSAIDS, because of my epilepsy medicines that take a toll on my kidneys and liver, bleah! Funny thing is the steroid helps with the pain better than the pain med lol!  Otherwise I have no new side effects to report from my last infusion til now Yay! 

Barb: I'm glad you are getting a break, hoping it will help resolve some of your issues, you are always in my thoughts and prayers 😃

Take care all my Durva pals have a great evening 😃

 

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Silly-thanks. That’s exactly where all my pain is except my lung hurts when I breathe and when I sneeze it hurts like is going to explode. I said today it’s the same spot on my back where the radiation scar was. Haven’t had any since February so Cant say it’s related. I’m happy for the break and the doc isn’t too worried about any negative impact on the treatment. I just want a week without pain when I need to use my arm

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Sillycat,

I had the same pains around the same time you are and the pain did not go away until I was put on cortico's at 20 mg per day for several days, I believe 3 days and the pain was gone and I stopped taking the roids on my own before 4 days so I didn't have to taper down and still continued treatments. 5mg of cortico's wouldn't have been enough to stop the pain in my side (underarm) or 10 mg for that matter. Chest pains are potentially dangerous side effects to this drug and they should be taking you a little more seriously when you tell them these things other than saying "could be this" or "could be that" or "we don't know". It is THEIR job to find out if it is the Durva that is causing your pain by applying corticosteroids to see if the pain stops. Sounds like you are in a precarious situation with over the counter pain medications since Tylenol and Ibuprophen really helped a lot for me on pain and inflammation. I am surprised your onc didnt delay your treatments for at least a week until they knew more about your pains or at least prescribe a higher dosage of corticos. So sorry you are in pain, I have just recently jumped on the cbd oil wagon, I read it can help with pain too but it can be expensive....

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Hey Charles. Seems this pain is common. Onc is calling it Pneumonitis and not pleuritis and sending me to the pulmonologist to make sure we get it gone. I’m missing one dose and then back on schedule. At first I was miffed that she’s making me go see the pulmonologist and not just giving me the roids so I can stay on schedule. Her thought was to get it right so it doesn’t get worse and get the pulmonary function tests too. Nervous to take a break but better than more lung damage. 

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Hi Barb-

The Durva Road isn’t an easy one for sure.  The treatment break will hopefully help relief some of the pain which can be debilitating physically and emotionally.  You’ve got serious mo-jo so carry on- Jersey strong. 
Michelle

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9 hours ago, Charles said:

Sillycat,

I had the same pains around the same time you are and the pain did not go away until I was put on cortico's at 20 mg per day for several days, I believe 3 days and the pain was gone and I stopped taking the roids on my own before 4 days so I didn't have to taper down and still continued treatments. 5mg of cortico's wouldn't have been enough to stop the pain in my side (underarm) or 10 mg for that matter. Chest pains are potentially dangerous side effects to this drug and they should be taking you a little more seriously when you tell them these things other than saying "could be this" or "could be that" or "we don't know". It is THEIR job to find out if it is the Durva that is causing your pain by applying corticosteroids to see if the pain stops. Sounds like you are in a precarious situation with over the counter pain medications since Tylenol and Ibuprophen really helped a lot for me on pain and inflammation. I am surprised your onc didnt delay your treatments for at least a week until they knew more about your pains or at least prescribe a higher dosage of corticos. So sorry you are in pain, I have just recently jumped on the cbd oil wagon, I read it can help with pain too but it can be expensive....

Good to hear from you Charles! and thank you ! I did have a 2 week break from treatment and pretty much all of my pain went away, so yes it is from the Durva 😃 however, a lot of my chest pain is stress related as I am dealing with a lot of personal and financial issues along with this nasty cancer beast =( but I have a pill for that too haha! I just have to pick my battles with care these days.  Actually, today I see my counselor and physically I really feel not bad 😃 so I'm hoping for a good day!

I have heard some good things about the CBD oils, I'm a light weight, everything pretty much knocks me flat out hahaha! My Neurologist has told me NO! to both Medicinal Marijuana and CBD oil on my last visit in June. I have Petit Mal seizures sometimes lasting up to 5 minutes and he said he doesn't want me wandering around high as a kite in a fog looking for a cookie that isn't there lol!   So for now I think I will try more meditation to help with the stress, keep close to the members of my family that are positive and relax and breathe 😃

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Hi Michelle. You are so right. The pain does effect you emotionally and then the physical feels worse. I consider myself lucky, I got through 12 infusions without major problems. The PA in docs office said she has seen others who couldn’t tolerate the first infusion and that was the end. So a little break will do me just fine both physically and mentally.  Hope you are doing well and enjoying your trips. 😎

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Barb...

I'm glad ya get a break anyway...the pain should ease up some now I hope! Dang pleuritis or pneumonitis... or bursitis.... or whatever it is!🥴

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Barb, 10-4 0n the break from durva, had to take a few of those myself

Sillycat, you are smart and funny and I am glad you are in good spirits

I've been laying low and pixellating and listening to everybody else, scheming on how to get one or more steps ahead of the beast  I have been on this site since page nine and have noticed  similarities in some of our Durva journeys other than the infusions themselves. Infusions 2 and 8 seem to be recurring as noticeable Durva event occurences. My next one will be 16 (should be 21) and  I am as grateful for  prednisone and levothyroxine as I am Imfinzi FOR SURE!  It seems from reading here that after #12  "things" begin to change or the stakes SEEM go up so to speak. I have noticed that my Onc's asst. gets all stuttery and appprehensive when I mention the numbers 12, and 15-24 but generally all after 12. I have "tested her waters" for deception and/or apprehensiveness to reveal the real deal and she has tested positive for both in an innocent type way, but she has become defensive of durva a time or two and I have had to remind her on a couple of occasions that it is OUR cancer, but it is my lungs, my thyroid, and my LIFE, being as nice as I could along the way. I rarely (after 12TH) get to see my actual onc anymore but he has been forthcoming and honest. Being on schedule doesn't seem to be too important to them until it's time for that money so I consider it in my best interest to let them know that if the durva stops working (to me, when shrinkage stops) at 15 or 16 then I might opt for a plan B before mets occurs if at all possible. I had to actually insist to get my pet/ct scan this friday (several weeks past 90 days on my last one) under the advice of the assistant "your insurance probably won't approve it", but they did, and in I'll go hoping and praying for the best, but goes to show that sometimes you have to advocate for yourself in the heat of some battles and this is a crucial time in my mind needing to know the size, location, and movement of the enemy, and if "our" strategy is still working or not. If the beast continues to shrink then Glory to God and you'll see me at the finish line, but if it doesn't and there are no mets after this scan, then Glory to God for allowing me to pinpoint WHEN would be the most opportune time to find a plan B and come off this crap and start recovering from something that I don't know if I'll ever recover from in the first place, before mets occurs. That is my goal at this point, continue till the last treatment if shrinkage continues then from there we'll go, no more shrinkage, no more Imfinzi, IF I GET THE CHANCE.....Hoping and praying for the best but being ever vigilant for the worse

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Charles-the PA said yesterday that the Durva is cumulative so maybe that’s why #12 is a rough time for most. It piles up too much and we have to take a break to get rid of the overload. I’m just guessing but it makes sense to me 

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