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Durvalumab


Robert Macaulay

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Had my first Imfinzi treatment on Dec 3rd. My reactions were at least ten times worse than chemo (Carboplatin and Taxol)

Fever, pounding headache, sinus neck and eye pain, joint pain, fatigue. I must reassess whether I can tolerate this for a year. One week later I am barely getting back to "normal" . While I have been hopeful I might regain my energy after chemo ended, unless there is a way to moderate this immunotherapy I think I'm going to have to stop it.

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SteveD,

It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

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Sounds pretty awful, Steve--I hope Ron's right and it might be a temporary reaction. I'm still trying to figure out the genesis of my severe lower back pain that came on last week--apparently that can be a side effect of the Zometa I'm taking for bones (or I suppose could be a sign of a spinal met). If it's the Zometa, I dearly hope it's a temporary effect because it was unbearable until I was prescribed oxycodone (which I needed just to get through my CT scans on Tuesday).

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Steve, have you asked to be connected with someone in Palliative Care? Their job is to help sort out things like side effects. There might be strategies that could address the worst of the effects you're experiencing. 

And as far as whether misery is "worth it" depends, I suppose, on how long the misery continues vs. the possible benefit (and also what other options might be available).

I'm not for a second suggesting there doesn't come, for some people, a point where it makes no sense to continue treatment. I think you might be a ways off from that point right now, but I totally get the feeling--I won't say the thought didn't cross my mind with the back pain that left me unable to sleep. Still, the pain med prescribed to deal with it helped tremendously. And if this comes on for a few days after each Zometa infusion, I could probably take it, as long as the pain meds work.

Hoping you will try to hang in there and bring in some additional professionals to help you get through this.

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The facts are out there. 36% of those receiving Durvalumab had to suspend treatment due to severe "side effects." Some studies put the number upwards of 42%. Pallative care, aka pain killers, does not appeal to me. Occasional use may be OK but the need for ongoing "pallitive care" is self-defeating, in my opinion. If I am one who cannot tolerate the drug, so be it. I'll wait to speak to my chemo doctor.

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SteveD 

sorry to hear about your bad reactions... I suggest you try CBD oil in a tincture, it's good for a lot of your problems. Do a search about it and talk to your doctors 1st. Most people on this Forum that had to stop Durva because of side effect did start again after a pause. Do you know your PDL-1?

good luck on your journey

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Tomm,

No I don't know what the PDL-1 is. I didn't get a copy of my labs last time either. Hope to have a conversation soon with my doctor.

What I do know is, I've had a bad reaction to this drug, and/or, my body must be stronger to withstand this treatment.

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SteveD..

more on PDL-1

PDL1 (Immunotherapy) Tests

What is a PDL1 test?

This test measures the amount of PDL1 on cancer cells. PDL1 is a protein that helps keep immune cells from attacking nonharmful cells in the body. Normally, the immune system fights foreign substances like viruses and bacteria, and not your own healthy cells. Some cancer cells have high amounts of PDL1. This allows the cancer cells to "trick" the immune system, and avoid being attacked as foreign, harmful substances.

If your cancer cells have a high amount of PDL1, you may benefit from a treatment called immunotherapy. Immunotherapy is a therapy that boosts your immune system to help it recognize and fight cancer cells. Immunotherapy has been shown to be very effective in treating certain types of cancers. It also tends to have fewer side effects than other cancer therapies.

Other names: programmed death-ligand 1, PD-LI, PDL-1 by immunohistochemistry (IHC)

What is it used for?

PDL1 testing is used to find out if you have a cancer that may benefit from immunotherapy

here is the link  https://medlineplus.gov/lab-tests/pdl1-immunotherapy-tests/

and a joke...  Atheism is a non-prophet organization

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  • 1 month later...

Barb: great news indeed but maddening at the same time. Now if we manage to figure out how to asses the whole lung cancer population, for ALL immunotherapy drugs, it might increase our knowledge and improve the survival rate. It looks like we are so close but we rely solely on individual Pharma and their drive for profits. Why does a specific drug work for one patient and not another patient? That shouldn't be hard to figure out. If we combine all pharma results we should be able to target patients with the correct treatment instead of applying drugs based on a single clinical trial.

Thanks again.

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  • 1 month later...

I have had three infusions. The second was bad since I had moderno vaccine at same time and I believe vaccine caused that reaction. A couple of days after 3rd infusion I'm getting a fever(99.5-100.5) every afternoon about 4:00-5:00. I'm fine during the day but curious if anyone else is experiencing this? Thanks.

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Hi, Terry,

I'm not on Durva (I get maintenance of Keytruda and Alimta), but I think any fever should be reported to your doctor, just to rule out infection. Cancer treatment of all types messes with your body's response to infection, and sometimes in unpredictable ways. I'd check, just to be on the safe side.

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Hi Lexi,

Thanks, doctor aware and just monitoring situation. My guess is lungs inflamed a little and that is what is causing the problem. Nothing to cause me to stop infusions. My bewilderment is that I won't have fever all day and then 4:30-5:00 I get 100 degree fever. Very strange in my opinion. Have a great day Lexi.

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  • 3 weeks later...

Hi,

Ended up having pneumonia and spent two days in hospital. Learned that I should have pushed it more with my doctor. I knew something wasn't right. I pushed but not hard enough. Feel fine now and good news is that it did interfere with my infusions.

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Glad to hear you're better now! Yes, it always pays to push it with the medical professionals when something doesn't seem right. 

Was that a typo? I'm assuming the "good news" is that it did NOT interfere with your infusions?

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9 hours ago, TerryB said:

Hi,

Ended up having pneumonia and spent two days in hospital. Learned that I should have pushed it more with my doctor. I knew something wasn't right. I pushed but not hard enough. Feel fine now and good news is that it did interfere with my infusions.

Listen to your body. If I hadnt I would have died twice! First from the original cancer and second when I had a PE. In both cases it required me to keep pushing until we found the cause. It is how it is....which means YOU have to listen to your body.

Surprised they didnt see elevated WBC in a blood test?

Peace

Tom

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Hi there Terry B,

So happy to hear your on the mend. Our bodies do strange things to us while on Durva. I completed al 26 infusions, with a mirad of side effects. I did, however, call my oncologist whenever something didn't just seem right. I was always screened by the nurse first, which in my opinion was best, because they deal directly with us and could tell me better if I should be concerned. My Dr would then call me. With that being said I wish you well and continued luck on your Durva journey 🙏

Namaste

Roseann

Edited by Sillycat1957
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Hi everyone.

I am a newbie. Diagnosed with NSCLC in September 2020. Was treated with chemo and radio and started Durvalumab in January. Had my #7 infusion yesterday. I have suffered the usual side-effects, breathlessness, fatigue and skin rashes. But it has been bearable.

I am also following an alternative treatment programme; Jane McLelland's "how to starve cancer", based on diet and repurposed drugs. I am also using THC as a means of apoptosis. Athough drug interaction checkers show no interactions between THC and Durvalumab, I am really keen to know the experience of others.

MIke 

 

 

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Hi again!

I'm not on Durva (I'm on Keytruda, along with pemetrexed, as maintenance therapy), but just wanted to note that it's important to run any other medications or supplements by your oncologist. Not everything you read on the internet about potential interactions is reliable and your doctor knows your situation the best.

It's still pretty early here in the US, but there should be some Durva folks along before too long. 

Glad to hear the side effects have been tolerable!

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I agree with LexieCat. I was told not to take anything except a multivitamin and if anything else to get oncologist approval first. 

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Hi Mike, 

Welcome to the Durva Club.  While I'm sorry you find yourself here, this is a good place to learn from a number of others who have crossed the Durva finish line.  

I'm very familiar with Jane's program.   Here is the US, it's considered fairly controversial.   She's a big supporter of Metformin, and I've had physicians over here in the US take a deep dive into the research.   It's all inconclusive.  Supplements with lung cancer treatment can become very tricky.  One of my peers took a DIY approach and ended up unintentionally impacting the effectiveness of his treatment plan because it washed the chemo out of his system too quickly. 

I am treated by a Board Certified Physician in Integrative Medicine. There are a number of supplements that I take that were reviewed and approved by both my clinical pharmacist and my oncologist.  My oncologist will generally go along with what the pharmacist recommends.  I am taking one off label drug, Low Dose Naltrexone (which is mentioned in the footnote of Jane's book).  LDN does have clinical evidence to support it's efficacy.  I've been taking that now for two and  a half years.  My labs and supplements are carefully monitored.  In the beginning as my treatment plan was initiated there were quite a few and as my cancer stabilized, many of them were discontinued to hold in reserve if there is a recurrence.  

 I think physicians's attitudes are starting to change about some of the alternative/integrative medicine approaches.  I've had lengthy discussions with my oncologist about this, at first he was skeptical, then he was curious, and now he says, let's not do anything different without talking to your Integrative Doctors.  

Here's a resource from NY, Memorial Sloan Kettering for you to take look at: 

https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs

I hope you find this helpful.  

Michelle 

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Hi Mike,

As a former Durvalumab user, I wanted to ask if you had your biomarker testing done before starting on the Immunotherapy? I too had the chemo and radiation and was then started on Durvalumab. After receiving 18 infusions, a CT/PET indicated a possible progression, so my ONC had a lung needle biopsy sample sent off for Biomarker testing. This testing confirmed that I was PDL1 negative, and ALK positive, so the Durvalumab had little or no chance of working. About the only good thing from the Durvalumab treatments was that I got to meet many great people here in the Lungevity Forums. Eighteen months ago I then switched to an oral Targeted Therapy drug, Alectinib. It has its own unpleasant side effects to deal with, but not quite as many as I had with Durvalumab. Just saying that if you haven't yet had the biomarker testing done, you should discuss with your Oncologist about doing so. Best Wishes.

-Ron

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Hi PMD and welcome. I have no experience with durvalumab. My lung cancer was stage 1a and required only surgery. However, I have had 2 other  non-lung primary cancers, one of which was stage 3 and aggressive and for that I had chemo and radiation.

I *mostly* (but not entirely) agree with the folks who posted above about "alternative' treatments" for cancer. i prefer to think of them as complementary, rather than alternative, since I have used them in addition to, rather than as a replacement for convetional treatment.

Through all of my cancer treatment, I've gone to a local clinic where I tconsulted with a naturopath. She knew a lot about cancer and conventional treatment, as well as complementary treatments. I had a lot of acupuntcture (which helped with side effects) as well as some suppolements and Chinese herbs. 

My experience with conventional medical doctors is that they mostly just say no to anything they don't know anything about. For example, my thoracic surgeon said no to a medication recommended by my naturopath, because he didn't know anything about it. Another example (not related to complementary treatments) was that my medical oncologist for my stage 3 cancer was hesitant to do anything other than treat it as a "regular" cancer, on the grounds that it was a rare type and there were no publshed studies about it and therefore other treatment would not be "evidence based". I got a second opinion from a doctor at our local university hospital, who had clinical experience with this cancer and reommended addtional treatment, which I had. 

There is little financial incentive to do typical clinical studies on THC and other cannabis derivatives--drug companies aren't going to make a lot of money off of these drugs. Also, it's hard for anyone in the US to do studies of cannabis derivatives because of the ridiculous restrictions the US government has put on them. As a result, uses of THC, etc, are bound to be " not evidence based". 

So I think sometimes we need to look at complementary therapies, get the most reliable info we can (which is hard} and make up our own minds. 

I found the oncology pharmacist at my infusion center helpful. He went through my bag of supplements and herbs and found only one to be a problem. It had an animal-derived ingredient which might be raw, and so could be a problem if I developed neutropenia. That sounded like a good reason to me--after all, I gave up sushi, too.

BTW, I'm NED on all 3 cancers. I don't know if any of the complementary stuff helped, but seems like it didn't hurt any,

Keep us posted.

Bridget O

 

 

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