Eagle13
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Posts posted by Eagle13
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Request a biomarker test. It can be done with a blood draw. Depending on the results you may match with one of the targeted therapy drugs like Tagrisso. Durva didn’t work for me. I was biomarker tested and prescribed Tagrisso. I have been on Tagrisso for ~18months now with no progression.
Never forget the power of prayer! 🙏🏻
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- DFK, Rower Michelle and Tom Galli
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1 hour ago, Tomm said:
Eagle 13, DKF, Sillycat ... thanks for the feedback on having a beer
Eagle ... hope things are going well for you ... I'd like to read an update on your progress after getting off the Durva journey
Hi Tomm,
I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday. There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018. I pray that the Tagrisso will keep working for a long time.
Thanks for asking!
Take care,
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1 hour ago, Tomm said:
....... I'm getting a chocolate beer this week. Anyone else told it's OK to have a beer?
A big Thank You to those that post here to show us what can happen and how to deal with it. It would be nice if people that read this and are on Durva share their journey with others, it will help others.
enjoy the season
When I was on Durva they told me alcohol was okay. Like your Onc said, moderation. If you like chocolate beer I have a couple recommendations
”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing
or
Samuel Smith’s “Organic Chocolate Stout”
cheers 🍻
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- DFK, Sillycat1957, Rower Michelle and 1 other
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Well said Michelle!
- Rower Michelle and DFK
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35 minutes ago, Barb1260 said:
Lol. The funky chicken. Thanks Charles. I guess I’ll put it in the back of my mind until I see the doc. I try to stay positive but you know how it is. Gonna plug myself into an inflight movie and look forward to getting home in 2 hours. Have a great Sunday.
Barb,
I developed a pleural effusion while on Durva. Ultimately, I was taken off the Durva because of it. The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me. I had 4 Thoracentisis done removing 6 liters of fluid from my left lung. The fluid was cancerous and moved me from 3B to stage IV. That was last July,2018. I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday. I am considered stable with no progression. There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all. I recommend asking for a biomarker test. There are many new treatments beyond immunotherapy.
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- Robert Macaulay and Charles
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33 minutes ago, Kleo said:
. Found out I have NO specific markers... no PDL1...so it did nothing. Dang it.
Kleo,
Did they do the full biomarker tests? I think I would ask for another full test. It can be done with blood.
https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/
praying for the best
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17 minutes ago, Robert Macaulay said:
Eagle13
That is correct. My doctor was upset that the ER doctor kept saying i was on chemo and had no idea i was on Immunotherapy. I now keep the info on me at all times and use the medical bracelet that Imfinzi gave me.
Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups. I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected. The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment.
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10 minutes ago, Barb1260 said:
The oncologist and pulmonologist spoke on the phone while I was standing there. They decided together to knock it out before the Durvalumab because it can be a side effect of the Durvalumab and I guess they want to start with a clean slate. All the docs are in contact because of the newness of immunotherapy and basically are still learning themselves because there is not a lot of history. Guess we can call them trail blazer guides.
There are breakthroughs in treatment taking place everyday. This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions. Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice. It has made a world of difference for me.
Forums like this one and other focus groups you can join are a wealth of information. Be sure and do your own verification on things you learn.
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8 hours ago, Tomm said:
Eagle 13 I have the gene mutations of the PDL-1 with 95%> positive.What is your mutation and what are you on now?
I am EGFR exxon 19 deletion. I have been on Tagrisso for ~7 months now. I pray that the Durva works for you. Glad they tested you.
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Have you had a PDL1 test to determine if Durva will work for you? Get a biomarker test done to see what mutation you are if possible. I had 8 treatments of Durva and learned it was not working for me. Biomarker test revealed the mutation I have and have been on another treatment for ~7 months with favorable results.
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Hello Opal,
The Durvalamb did not work for me. Even though I was given 8 infusions before they stopped due to my Pleural Effusion. I had no PD-L1 test before the immunotherapy. It would shown from the beginning it would not have worked. That switched me from stage 3b to stage 4. Biomarker tests were done on the fluid that was pulled via Thoracentisis. I went to a specialists with the biomarker test results and they put me on Tagrisso. My mutation is EGFR exxon 19 deletion per the tests. I have been on Tagrisso now for 218 days (~7 months). I have had several CTs and 2 MRIs and the results have shown no progression, the pleural effusion is gone, there is reduction in size of some of the lymph nodes and I am considered stable. Yes, there are some side effects from the Tagrisso but, I feel better every day. I am also aware that the type of cancer I have will eventually figure out the Tagrisso and will progress again. Discoveries are being made everyday. I am hopeful that there will be some other advancement for my treatment when the Tagrisso’s time is up.
There are several different mutations that can come back from the biomarker testing. I am fortunate enough to have been EGFR that has several options for treatment.
Stay positive, don’t be afraid to ask a true specialist for their opinion, never stop believing in the power of prayer.
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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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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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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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5 hours ago, Kleo said:
Roz...that's exactly why I asked the doc about it. They didn't mention the size of this in the pet scan-the active node that they are going to biopsy- so I wondered if it was big enough that they could get a sample from it. I guess it is! 🤨
Sooo...who has had the needle biopsy on a lung? Doesn't that puncture your lung though? Wonder which way they'll go in....front or back? Guess whichever way is closest..? Will they knock me out? Yikes.....this is some freaky stuff.
Please let em knock me out... LOL
Kleo- I had 4 thoracentisis procedures that involved a large needle stuck through my back into the pleura around my left lung. They drained over 6 liters of fluid from my left lung through these. They did a local anesthesia each time. I watched the procedure on the sonogram live. The initial stick was similar to the stick for bloodwork. It was surprisingly non-eventful.
I suspect the needle biopsy will be similar and actually less of an event. I’m sure they will give you a lidacane shot to numb the area that will actually hurt worse than the procedure. 🙂
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1 hour ago, Rower Michelle said:
Yay for the sample size! Takes a few weeks for the biomarker tests to come back. That testing is a game changer. Stay on top of the insurance coverage for it. I’ve been appealing my Foundation One testing for a month. Wasn’t cheap but totally worth it!
Took ~2 weeks for my biomarker test to come back. Absolutely a game changer for me. I take a Tagrisso pill once a day since I am EGFR. No more infusions since Tagrisso started and my port is being removed next week. This is working for me. I pray you get the right treatment to fight your mutation.
Biomarker test was done on my fluid from the thoracentisis. It was essentially blood.
BTW - I would ask for a bronchoscopy to check to make sure your lymph nodes are normal. Thats what they biopsied the first time for me. They didn’t make it to the small nodule that they were after because the lymph node looked abnormal.
Merry Christmas and Happy Holidays! 🌲🎅🏻☃️❄️
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- Kleo, Robert Macaulay and Tom Galli
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Originally I was told needle biopsy was the only option. Except for me, the nodule was too close to my heart so serious surgery was needed. I declined. After monitoring for almost a year, I was told there was a procedure called a navigational bronchoscopy. I opted for that since it was minimally invasive. I am now almost 1 year to the day a cancer patient/survivor stage 4 metastatic adenocarcinoma lung primary from my biopsy via the navigational bronchoscopy in 2017.
My CT this week showed results that the targeted therapy is working for me and has shut down the cancer compared to my last CT in October. I am convinced the genetic testing is the right approach, at least for me. Stay positive and never underestimate the power of prayer.
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- Robert Macaulay, Kleo, Roz and 1 other
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12 minutes ago, Opal said:
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May I ask what is difference in targeted therapy and immunotherapy you were getting? Good luck next week on CT. Maybe you will share.
"Never underestimate the power of prayer" - Amen
I was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion. I am now Stage 4. Biomarker testing was done on the fluid that was pulled.
I sought a second opinion with the agreement of my Onc. My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid. Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy. The targeted therapy is 1 pill I take once a day, every day at the same time. The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso. I am a non-smoker. EGFR is typical for non-smokers who get non small cell lung cancer.
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This confirms biomarker testing can be done from blood work.
https://www.nccn.org/patients/resources/life_with_cancer/treatment/biomarker_testing.aspx
I personally had 11 test tube size viles of blood pulled from me in one sitting to verify the biomarker test results from my pleural effusion fluid.
Based on what I have learned I don’t understand why this is not the first test done when you are diagnosed with lung cancer. I am hopeful the current targeted therapy I am receiving will continue to work for me. I’m in the 4th month and go for a CT next week to verify its still working. I beleive it is.
After the biomarker testing I was told immunotherapy treatment would not work for my mutation, EGFR.
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7 hours ago, Kleo said:
...... Dangit I wish they'd done the biomarker testing in the first biopsy. ......
Kleo-
I too wish they had done the biomarker testing on my biopsy. My biomarker testing was done on the fluid pulled from the thoracintesis. I also had blood pulled that confirmed the finding from the biomarker testing. In my opinion it can be done from bloodwork.
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Here is a good link that describes the PET and the differences from a CT.
https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
My personal experience has been insurance wont approve the more expensive PET unless the Dr has a pre-scan approval discussion with the ins company Dr. The PET is newer more advanced technolgy where the CT is the main stay.
You should ask for a copy of each scan from each provider along with the radiologist report. Its your medical record. I have personally taken my scan results to get second and 3rd opinions from no kidding top notch experts.
Don’t be afraid to demand the genetic biomarker testing. This is what changed direction for me after the Durva was not working.
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Durvalumab
in IMMUNOTHERAPY
Posted
Hi Mike,
Biomarker test can be done from a blood draw. Durvalumab did not work for me. I was not tested for PDL1 prior to the infusions. I had 8 infusions and ended up with a Pleural Effusion.
I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test.
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