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Robert Macaulay

Durvalumab

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Hi Sundance ....

How long have you been on durvalumab? I've only just started on this treatment (one infusion so far).  

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I was on Durvalumab for 2 months.  It did not work for me.  I developed a plural efusion and had to have 4 Thoracentisis procedures to remove the fluid. The fluid was tested for cancer and came back positive.  That moved me to stage 4.  Luckily they did biomarker testing on the fluid and I came back as EGFR.  Then I was switched to Tagrisso.  The Tagrisso has shut down the plueral effusion.  I have not had to have any fluid removed since starting Tagrisso a couple of months ago.

I was told by the pharmacist that pleural effusion was a possible side effect of the Durvalumab.   If you start experiencing severe shortness of breath you should go see your pulmanologist and have them check for fluid build up around your lung(s).

If you have not had biomarker testing done I would ask for it.  In my opinion the targeted therapy determined from the biomarker testing is the right approach.  By design it goes after the genetic code that is the engine for the cancer you have.  

BTW-  the Thoracentisis procedure is not a big deal.  Seems a little scarry when you hear about it.  If you have fluid build up, you will notice a major improvement in breathing once its removed.  Check Youtube for a video of the Thoracentisis procedure.

Don’t underestimate the power of prayer.

 

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Eagle...I'm glad they got you sorted out! 

I asked my onc if they did any genetic testing on my samples. She said no...that's only done if it's metatastic. wha? But....it spread to my lymphnode so isn't that still metatastic? Locally metatastic maybe? I dunno.

I think right now they give the durvamulab regardless of PDL1 levels. 

Anyway I'm happy to hear the tagrisso is working so well for you!

 

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....itspread to my lymphnode so isn't that still metatastic?

I am not a physician.  The definition of metastatic is when the cancer moves from the oringinal location to any other location in the body.   Don’t be afraid to get a second opinion from a specialist in lung cancer.   The treatment is was given was not working for me.  I asked my onc for a referral to a specialist.  That is when my onc ordered the biomarker testing on my drained fluid.  The test results and consultation with another totally separate cancer treatment facility is how my treatment changed.  I also had a totally separate 3rd consultation with a no kidding Lung Cancer Specialist at another cancer treatment facility to confirm that the Tagrisso was the right choice for my situation.  I was fortunate enough to find what appears to be the right treatment for me.  At least so far.  I am hopeful that it will be a long time before the Tagrisso stops working.  I am told that at some point the cancer will prevail and I will have to switch treatment.  The 3rd opinion specialist said he was hopefully it would be a few years or more.   That was very encouraging.

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Robert-  

My original diagnosis was Metastatic Adenocarcinoma lung primary and I was Stage 3b at the time.   I was told that the staging is based on where all the cancer is found.  I had a spot on my lung detected from a CT at a physical.  When a biopsy was scheduled via navigational bronchoscopy one of my lymph nodes on the opposite side was found to have issues and was biopsied.  Tumor is stage 1, stage 2 is detection nearby but still contained on the same side in the same organ.  Stage 3 was outside that organ but within close proximity like a lymph node.  3b since the lymph node was on the opposite side.   I became stage 4 when the cancer had spread to the fluid in the pleural effusion.  At least that is how I remember the staging being explained to me.   I was also told that staging is the way the physician determines the approach for treatment.  From what I have read my initial treatment was textbook for my diagnosis.  Chemo and radiation.  Once complete it was typical to go to immunoyherapy for “maintenance” or prevention treatment.  Unforunately, the immunotherapy did not work as expected for me.  You are correct,  not every drug works for every individual.  That is why it is critical to seek as much expert advise as you can get.

Looking back,  knowing what I know now, I would demand biomarker testing before any initial treatment.  Of course hind sight is always 20/20.   Who knows what would have happened since Tagrisso wasn’t approved by the FDA until I had already had a couple of months of treatment.

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Kleo-

drink a lot of water to counter the side effects.  I found that drinking plenty of water every day made a big difference in side effects.  It worked for the Platinum based chemo and the Durvalumab.  In my cased the side effects of the Durvalumab were a cough, fatigue and the unfortunate build up of fluid. (Pleural effusion). Hopefully, you won’t experience the Pleural Effusion.

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I'm drinking water! Ok and coffee too but that is just flavored water in my book. LOL I've only had the one infusion so I guess there hasn't been time enough yet for side effects to show up. Hopefully none will! 🤞

 

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6 minutes ago, Kleo said:

I'm drinking water! Ok and coffee too but that is just flavored water in my book. LOL I've only had the one infusion so I guess there hasn't been time enough yet for side effects to show up. Hopefully none will! 🤞

 

I found that coffee was a problem for me until I started the Tagrisso.  It gave me dry mouth and irritated my throat.  I believe my issue was the radiation treatement that focused on my lymph nodes next to my trachea.  I was a major robust coffee drinker before the chemo and radiation.   It seems like I am finally healing from the radiation and can drink my favorite coffees again.

I had 7 treatments of Durvalumab(Imfinzy) before I had to stop.  It is no fun to have to do the infusion every two weeks and the blood work that goes with it.  For me, I noticed shortness of breath getting worse as the treatment progressed.  Stairs were particularly a problem.  It got so bad I had to start using the elevator to go up 1 floor.  Finally during my 7th treatment visit I asked what I could do for relief. Inhaler, oxygen concentrator etc....   that is when I was told the onc would have to defer to the pulmonologists if I wanted those things.  I went to the pulmonologist, he told me I had ~gallon of fluid and sent me to the ER for a Thoracentisis.  That started to road to Tagrisso.

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1 minute ago, Robert Macaulay said:

Eagle13

Did you not see a doctor in between your Durvalumab infusions, I do. Going Monday afternoon and she will give me checkup and asks for any concerns prior to my next infusion.

Yes, every treatment I saw the PA or the oncologist.  I told them both about the continued issue with shortness of breath at each meeting.   They wanted to give the treatment time to work and were waiting for the time when the next CT was allowed by insurance.  The CT is what they go by to see how things are working or not.   A chest xray will show the Pleural effusion.   I got a CT after the chest xray in the ER.

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Yes I go for my first Ct on the 29th of this month since starting the drug and my Oncologist stated prior to starting they will make a decision then to stop or continue. I meet with her on November-9 for that outcome.

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Hi! I'm newbie here and finding way around site. Wondering if anyone on Durvalumab got the "rash" or other side effects?  I started #1 infusion of Durv 8/30, then 9/11 and 9/27 and few days after 8/30 I started getting bumpy skin which turned into red bumps and is still moving to new areas.  Doc stopped 10/9 immune and put me on 70 mg Prednisone.  I'm tapering down now.  Still have red bumps. Altho not a crazy itch it isn't pretty. 

I'm due for CT for radiation doc 11/1. Scanexiety!

From what I see on site seems I'm close to a couple others doing this same immuno.  I'd love to hear from you. 

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Hi Opal and Welcome!

I've only had one infusion so far but haven't noticed anything rashy yet! I guess it's too soon to tell maybe...? My second infusion is tomorrow...I'll be watching for any changes.  I have heard that Keytruda can cause skin irritation and Durva is so similar that I'm not surprised.

Scanxiety! EEP!  Got my fingers crossed for a good scan for you!

 

 

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Never had rash but itchy skin yes and that is one question the doctor asks at each checkup do you have a rash and I seen a picture of a woman with the symtoms ouch!.

Good luck on your scan, I am lucky I get mine a day before yours.  lol

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2 hours ago, Opal said:

Hi! I'm newbie here and finding way around site. Wondering if anyone on Durvalumab got the "rash" or other side effects?  I started #1 infusion of Durv 8/30, then 9/11 and 9/27 and few days after 8/30 I started getting bumpy skin which turned into red bumps and is still moving to new areas.  Doc stopped 10/9 immune and put me on 70 mg Prednisone.  I'm tapering down now.  Still have red bumps. Altho not a crazy itch it isn't pretty. 

I'm due for CT for radiation doc 11/1. Scanexiety!

From what I see on site seems I'm close to a couple others doing this same immuno.  I'd love to hear from you. 

I noticed a rash on my face similar to rosacia.  It would become less noticeable as I became acustom to the treatment.

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Kleo

My bet is this time next week you can stop looking but maybe still scratchin. If you can avoid the cough and mine is very slight not even a concern to the doctor and your still good to Go, Your are on your way  for the four infusion blue ribbon 😉

 

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