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Robert Macaulay

Durvalumab

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From American Cancer society article on Immuntheraphy

Durvalumab (Imfinzi) also targets the PD-L1 protein. This drug is used a little differently than the other immunotherapy drugs. It is used in people with certain types of NSCLC whose cancer has not gotten worse after they have already received chemotherapy along with radiation (chemoradiation). The goal of treatment with this drug is to keep the cancer from getting worse for as long as possible.

Bob

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58 minutes ago, Robert Macaulay said:

From American Cancer society article on Immuntheraphy

Durvalumab (Imfinzi) also targets the PD-L1 protein. This drug is used a little differently than the other immunotherapy drugs. It is used in people with certain types of NSCLC whose cancer has not gotten worse after they have already received chemotherapy along with radiation (chemoradiation). The goal of treatment with this drug is to keep the cancer from getting worse for as long as possible.

Bob

Bob -  that was exactly how I was prescribed Imfinzi without a PD-L1 test.  Unfortunately,  it did not work for me.  I can’t emphasize enough how important the bio-marker testing was for me.  In hind sight, I believe the bio-marker test should be done before any treatment is started for NSCLC.  My bio-marker test was not done until the Imfinzi showed it was not working for me and I ended up with a Pleural Effusion.

🦅

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Eagle1

I leave all those decisions up to my doctors who monitor my conditions prior to my infusions with checkups and blood work and CT scans every twelve weeks. I was given the option of this drug as it is not being paid for under the Government health care at this time and the drug company is picking up all the costs involved.

Bob

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I agree Eagle...it should be just SOP at this point to get the biomarker testing right away in my opinion. 

I've now had 2 biopsy procedures and STILL did not have biomarker testing! 🤨

 

 

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Interesing. My NSCLC was adenocarcinoma stage 1a and I only needed surgery, but they sent my sample for biomarker testing, which apparently this hospital/surgeon do as a matter of routine. I wonder why there's such variatio in practice.

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Hey guys- Something interesting happened today during my acupuncture appointment with the hippie doctor.  He asked if I would be willing to be interviewed by a first year med student taking his class on Introductory Integrative Medicine.  She’s already learning about the importance of bio-marker testing!  She had a pretty good working knowledge of it.  So there is hope for the next generation of docs if medical schools are teaching this stuff to the pups.  

They are also being trained to be more curious about lingering coughs that do not respond to antibiotics or allergy meds.   Sounds like we’re making some progress.  

This gal was excited to meet a real LC mutant- not just one on paper.  LOL.  

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Hi My fellow Durva people! 

Saw my onc yesterday. Looks like she's decided that ALL the activity in the scan...the ribs too...is inflammation. All because that one lil nodule showed inflammation in the biopsy? Seems presumptious to me but....whatever. Another stronger round of steroids for me...yuck. Then I will resume the durva. I do have another MRI scheduled for the end of January so...will see what that says. I have still been having weird muscle and joint pains...they kinda move around week by week. Could be treatment/inflammation related (as doc thinks). Could be cancer related. Could be old age related! Who knows man I get weird stuff all the time.

 

How's everybody here doin? 😁

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Hey Kleo- 

Great to hear from you!  So I get the inflammation & here is what my hippie doc recommended for me: 4 grams of curcumin, 4 grams of fish oil & 2 capsules of Inflammatone all by Wellavate.   Plus my weekly spa treatment of acupuncture.   Gotta say I was so super skeptical about all the hippie stuff but the look on my medical oncologists face of utter bewilderment is priceless!  So far so good for me. 

Michelle

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24 minutes ago, Rower Michelle said:

Hey Kleo- 

Great to hear from you!  So I get the inflammation & here is what my hippie doc recommended for me: 4 grams of curcumin, 4 grams of fish oil & 2 capsules of Inflammatone all by Wellavate.   Plus my weekly spa treatment of acupuncture.   Gotta say I was so super skeptical about all the hippie stuff but the look on my medical oncologists face of utter bewilderment is priceless!  So far so good for me. 

Michelle

Don’t forget the Organic beet juice.  I also take 1000 mg of Tumeric (curcumin) daily. 😬

Kleo - the weird muscle and joint issues are just part of the norm dealing with cancer from what I can tell.   It may have been triggered by the chemo and radiation, at least for me.   It continued through my Durva and also with my current treatment of Tagrisso.   The Tagrisso has cause muscle issues and fluid build up in my lower legs and ankles.  You just have to keep moving.

🦅

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What I want to know is how is a person to pay a $3000 (20%) Co-Payment in the US?

Now I’m really depressed that I can’t afford to pay for that so why am I doing any of this? 

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Yes Barb the whole money thing is so completely ridiculous. I’ve just decided to develop a different orientation to zeros & not worry about it.  I see brochures all over KU espousing their low cost payment plans.  So figure that you’re getting Mercedes healthcare with a Camry type payment. Negotiate, negotiate & negotiate.   

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Kleo,

I'm hanging in there! Sorry to hear about your muscle pains but it sounds like good news that the docs are attributing what they saw on the scan as inflammation!!

Thinking of you,

 

Ro

 

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Hi Kleo

Found out today I will be taking Durvalumab after my radiation and chemo. 

How are you doing on it?

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My name is Charles, I had been diagnosed with stage 3b NSCLC  and a brochoscopy w/biopsy confirmed. A pet scan also confirmed a tumor 13 cm x 8cm in my right lung with suspected partial lung collapse. went through 35 radiation treatments and 10 chemo infusions with taxol and carboplatin with relatively no side effects until after treatments were through. lungs continue to make excess mucous and  inflammation 1 month and 8 days after treatment stopped. had initial ct scan after treatment and scan showed tumor at least 50% smaller (7cm) but they don't know exactly how much smaller because a lot of what is seen on the scan is suspected to be inflammation and/or dying tissue.so shrinkage could be exceptionally more than 50%. continued to cough up and expel less and less matter and pinkish to red mucus until today. coughing continues to improve slowly and lungs appear to feel like they are healing. I am scheduled to start immunotherapy (durvalumab) tomorrow Jan. 22 and I am very anxious and nervous. The difference between my whirlwind with cancer and others on immunotherapy blogs, mainly durvalumab blogs seems to be that I am trying to be more proactive in my plan than others seem to be in theirs, I could be wrong though. I had to disqualify my first radiation doctor after the consultation  because he did not fit the criteria in my treatment expectations. He seemed to be too complacent and non-chalant about my case without even seeing my scans and seemed to want to put the radiation part of my treatment off until after chemo, which research has shown that chemo and radiation concurrently killed tumors better than consecutive treatments in my type of cancer, boy I'm glad I did my research on that one because that part has been a success as far as tumor shrinkage goes. Also, since I am a part of my own treatment, anything I can do to help the treatments, I feel I am doing, like trying to eat more healthy foods like fresh vegetables as close to raw as I can stand them and maintaining my bodily ph levels at 8.0 to 8.5 (due to my research and beliefs) with the help of ph test strips, during chemo and radiation. and will continue to keep ph from 7.5 to 8.0 during immuno. all with the blessings of my onc dr., primary care provider, and radiation dr. So far, by indications and research all has gone very well. I haven't read anywhere that a 13x8 cm tumor was shrunk so much, so I have to believe that my contributions to the medical treatments have worked hand in hand. And one of the biggest factors of it all is GOD! I have prayed for God's help and presence in all this and know at the time of his works that he is here with me and the direct cause of the miracle at hand. I consider my decision to help with my treatments a part of his miracles. I am nervously awaiting the time for my initial pet scan after treatments and hope that my immuno goes well. I know that durvalumab is not given with curative intents but in my eyes it cannot hurt but my goal is curative. I this comment is long winded, which I hope I will be when this whirlwind subsides and I hope this is the correct place to air my comments as I have never had to comment in this way before. I will try to monitor and post as the immuno and pet scans progress and answer ones who reply if any, Thanxm Charlie..

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Ask for a biomarker test.  At a minimum get a PDL-1 test to see if you are a good candidate for the Durvalamb.  The biomarker test is really the way to go.  I found out after 8 treatments that I was not a good candidate for Durvalamb since there was no PDL-1 test prior to starting treatment.  That is when a biomarker test was done.  I have been on targeted therapy now for 150 days taking Tagrisso since I am EGFR mutation.  I was 3b went to stage 4 while on the Durvalamb.  The targeted therapy has stopped the progression of the cancer and reversed it in some of the lymph nodes based on measurements from CT scans.   You are spot on about the power of prayer.  

🦅

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Charles

One of the things i found very helpful while on  Durvalamb was to monitor my blood work prior to infusions very good indicator as the lab send me the results.

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Hi Charlie.

Sounds like you are making great progress.  God is good everyday!  So glad you found us.  You may also want to check out the breathing excercises by Andrew Weil MD.  You can purchase the CD on Amazon or look at some of the YouTube videos. They will help the healing process.  I do them everyday & on my last CT scan the “lung junk” was gone.  Of course I have my prayer posse too & that works!  

Michelle

 

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Just sat for my first infusion of Imfinzi on Jan 22nd and all seems well here on the 25th, worst part was the stick to the hand (darned veins) No side effects that I can blame exclusively on the immuno drug (knock on wood!)  When I began this whirlwind I vowed I would not face it blindly, I vowed to myself that I would do everything in my power and resources to combat and conquer, if at all possible, and maintain a positive attitude with the help of God. I ask my self, "is there something I can do to help imfinzi to work better or at least keep my cancer from metasisizing to another area?" Then I'll research that question like crazy on the internet, then weigh up the findings with an open mind (good with bad) then make a decision to act or not to act on it. My findings on Durvalumab tells me it is less than a year old for NSCLC stage 3 and it is a pdl-1 blocker and has been researched in the pacific trials with some success- I found this fact utterly wonderful news since it is a drug just for our "condition" Then I found "it doesn't work for everyone" and claimed side effects were scary to me. At this time I know I won't be finding a lot of great success stories and "miraculous cure" claims for a while, so the "scientist" in me decided to look into "things" anyways. In 2015 a complete scientific study was done by H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida USA Department of Cancer Imaging and Metabolism, H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida USA3Department of Pharmacology and Toxicology, Faculty of Pharmacy, Mansoura University, Egypt , on then existing immunotherapies to include pd-1 blockers , WHAT? PD-1 BLOCKERS? is this the same PD-1 that  durvalumab's PDL-1 joins with to cause T-cells to ignore cancer tumors and not destroy them? YES IT IS! and here is the website   www.ncbi.nlm.nih.gov/pmc/articles/PMC4829106/        There is no research available like this on Imfinzi that I know of except the pacific trials which only gave results of administration of the drug as opposed to placebo, and percentage of success and failure overall. The rest of this is my theory due to their research: The website address I gave earlier, which is scientific research done on immunotherapy in vitro and in vivo (petrie dish and mice) that claims PH levels of cancer tumors are key to immunotherapy's level of success and the mechanisms thereof. Since Imfinzi Durvalumab (pdl-1 inhibitor or blocker) was not available to be tested on this test, Pd-1 blockers (known now as Keytruda) was. Pd-1 and pdl-1 work hand in hand together to fool T-cells into not killing tumors and the above research has stated that t-cells don't activate in an acidic environment which tumors are (so they claim) So what this means to me is even if the pd-1 and pdl-1 molecules are being blocked from fooling the t-cells, if the t-cells don't activate due to acidic conditions , then shouldn't they try to adjust ph level? THEY DID! AND IT WORKED! They called it "buffer therapy" and I am doing this at home to try and make the immuno work for me at a safe and maximum rate with hopefully, little to no side effects. So I have all my little supplies together to include ph test strips and the vehicle to "buffer' my tumor's ph , and my elixir formula made up that I take and have been doing this since chemo and radiation which also was shown to benefit from ph "buffering" and so far no bad news. I just put this out there because in the least it makes for fascinating reading and I am like Johnny 5 on the subject- I-N-P-U-T! Thanx

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Charles

I like your home kit for ph i check my Bicarbonate one of the thirty two items that are checked bi weekly prior to ordering the infusions by the doctor and at present i have five out of range. So enjoy the the ride and the goody basket which will include your new medical bracelet and some other nice items.

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Bridget, I have thought about a port but have found ways less invasive to make veins pop up on the hand like drinking more water the day of and before infusions just simply forgot to this time, thanx. To Eagle, Robert, and Rower, thanks for replying to my long winded opener. Eagle, I sure hope my pdl-1 is positive, Robert, I get my labs before treatments but if key readings are too low my Dr. will cut back on the amount or not administer treatment (God forbid)at least that's what he did during chemo. Rower Michelle, Thanks for the info. and I have to reset my password everytime I come on here and that is also a pain in the gluetius maximus.

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Robert, I am really anxious to find out if I get a goody basket out of this although an Imfinzi Durvalumab t-shirt in my size would suffice nicely, what do you do if you find dicrepencies on your lab levels?

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