Is anyone taking Orgovyx(relugolix) w... - Advanced Prostate...

Advanced Prostate Cancer

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Is anyone taking Orgovyx(relugolix) with Nubeqa(darolutamide).If so how long?

petrig profile image
29 Replies

I have Isup5,gleason 9 metastatic pca.In Firmagon injection 18 months(so 18 injections). Im going to ask my doctor to change Firmagon to Orgovyx.Taking Nubeqa too.(Sorry my english..😊)

Is anyone teking Orgovyx with Nubeqa?

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petrig
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29 Replies
JohnInTheMiddle profile image
JohnInTheMiddle

Petrig, bravo triplet therapy! For me it has been Firmagon (almost 40 injections now, and a dedicated nurse that does a good job on the injection thank heaven), six sessions of Docetaxel, and in my case Abiraterone instead of Nubeqa / Darolutamide. A fantastic combination either way!

I have looked into Relugolix/Orgovyx, although it is not available to me in my jurisdiction in Canada yet. I wanted to do this because of the problems I was having with Firmagon. And this alternative of course is also GnRH antagonist, which to me is preferable, as opposed to a Lupron agonist.

However I stayed on Firmagon. Here are my thoughts:

1. I stayed on Firmagon despite enticements to move to the supposedly more convenient Lupron, after reading about the possible advantages. I was originally put on it to avoid testosterone flare which in my case was a serious risk given masses pressing on my spinal cord.

2. I also note the risk when one does Orgovyx, based on its pharmacokinetics. It is metabolized so quickly that taking the drug at exactly the same time every day is very important. And you cannot afford to miss a day or be late.

3. I became aware of the importance of nursing skill for the monthly Firmagon injection. I have overheard a nurse about to give me my injection being instructed on how to do it in the hallway. I have read the instructions. It's about 20 steps. And they have to be done exactly right. And the hard part is doing the injection in subcutaneous fat and not anywhere near muscle. There are people - mainly in Australia from what I can see where they're more manly I guess - who do their own Firmagon injections. During my chemo treatments my wife did injections for anti-infection semicolon saves a trip to the clinic and is easy to do. But I haven't wanted to do my own Firmagon injections. Based on these problems I have been able to arrange for a funded nurse to come to my home to do the monthly injection. And the results have been consistently excellent.

4. I do get "Firmagon Flu" for about 36 hours starting about 6 hours after the injection. I get shivers and sometimes shakes. I go to bed and put six blankets on me. And I sleep from 9:00 to 16 hours. And it's interesting to know on my Fitbit that my heart rate variability falls through the floor. And by odd one time coincidence at my last semi-regular blood panel, which was just 16 hours after my injection, I was able to see the effect of Firmagon. My leukocytes skyrocketed. I made a joke with my wife and said "See, I really am sick" 😃. Overall not a bad price to pay for a stable situation.

Separately elsewhere I have written about my choice for Firmagon. Because it was too late, hello referrals to palliative care, I have had no surgery or radiation or associated damage. And I have been especially fortunate to have been prescribed triplet therapy, even though this was and I think still is not the standard of care yet. And will shortly be starting my fourth year on this journey. I'm fortunate that my only side effect right now really is fatigue. And because of several weakened vertebrae, and injunction to be careful of heavy lifting and twisting.

My focus is on doing what I can to see if the state that I enjoy now can be maintained. Can we call it chronic? All the literature suggests that resistance awaits. What can I do to put that off? Exercise I fully believe in but I've had challenge maintaining my volume. I do cautiously take a few supplements.

A continued success for you Petrig, whatever your choice!

By the way just the idea of Finland makes me happy, because I like snow a lot, living in Canada as I do.

petrig profile image
petrig in reply toJohnInTheMiddle

Continued success for you too. I hope you all the good.Petri

PS. Santa lives here in city of Rovaniemi

Seasid profile image
Seasid in reply toJohnInTheMiddle

I am also getting degarelix ADT injections every 28 days since June 2018. I also had like you sometimes like a flue like symptoms but I believe it is only a reaction to the injection if it is not properly given.

They should change the site of the injection every time in a circular way. I believe that you are getting your reaction because they are injecting firmagon into a previous scar tissue. At the start I went to the emergency of my local hospital just in case but the emergency physician said that high temperature 38 C can happen as a reaction to the injection.

As I said they are most probably injecting degarelix into your previous scar tissue or thy are injecting it not deep enough. If the injection is close to the skin and if they are doing too quickly the derma can rupture and that will cause reaction.

You can find a video with the proper instruction how to perform the injection on the manufacturer website.

One more thing.

1. They should inject it extremely slowly (longer than 30 seconds)

2. They should avoid hitting previous scar tissue (check it with your fingers) .

3. They should inject it deep into the fat tissue.

4. They should hold a needle at least one minute inside your fat tissue before slowly removing it otherwise it can bleed out plus the degarelix could flow out.

5. Ideally they should check before starting the injection process that they didn't hit a vessel bu moving backwards the handle of the injection. (My nurse is not doing that out of fear that if she has to abort the injection than it would require a new degarelix and cost lots of money. I said to her it is only István.

petrig profile image
petrig in reply toSeasid

Thank you for the answer. Here in Finland you get the injection in public healthcare so nurse can be different every time so you have to "teach" how to give the injection.Last time it was given wrongly so my skin reacted quite badly. Orgovyx is similar to Firmagon so I will ask my doctor to change to Orgovyx. Easy take at home. Firmagon has worked very well and is better than for example Lupron. Orgovyx is also better than lupron.

petrig profile image
petrig in reply toSeasid

I have made a card I carry in my wallet to show the nurse where to inject each time.

card
petrig profile image
petrig in reply topetrig

backside of the "Firmagon -card".

back
Seasid profile image
Seasid in reply toSeasid

ChatGPT said:

Certainly! Here’s a comprehensive, step-by-step guide for administering degarelix (Firmagon) injections, incorporating all the best practices discussed in this conversation. This guide focuses on optimizing patient comfort, medication efficacy, and nurse safety while minimizing side effects and complications.

---

Step-by-Step Instructions for Administering Degarelix

---

Preparation

1. Check Medication:

Verify the correct dosage and expiration date.

Allow the vial to warm to room temperature (20–30 minutes). Never heat it artificially.

2. Gather Supplies:

Alcohol swabs.

Syringe and appropriate needles:

Use a larger-gauge needle (e.g., 18G) for reconstitution.

Switch to a smaller needle (e.g., 22G) for injection.

Clean gauze or cotton ball.

Sharps container for needle disposal.

Gloves for nurse safety.

3. Reconstitute the Medication:

Mix the medication as per manufacturer instructions.

Use the larger-gauge needle to reconstitute and gently swirl until the solution is clear. Avoid creating air bubbles.

4. Inspect the Injection Site:

Choose a spot on the lower abdomen, at least 2 inches away from the navel.

Rotate injection sites to avoid scar tissue, irritation, or nodules. Use your fingers to palpate and confirm the site is smooth and free of abnormalities.

---

Administering the Injection

1. Prepare the Skin:

Clean the site thoroughly with an alcohol swab and let it air dry.

Optional: Apply a topical anesthetic (e.g., lidocaine) or an ice pack for a few minutes to reduce pain.

2. Position the Needle:

Pinch the skin to lift the subcutaneous fat layer away from the muscle.

Insert the needle at a 45-degree angle into the subcutaneous fat.

3. Check for Blood (Aspirate):

Pull back the plunger slightly to ensure no blood enters the syringe.

If blood appears, withdraw the needle, apply pressure to the site, and choose a new injection location.

4. Inject the Medication Slowly:

Administer the medication over 30 seconds or longer.

Slow injection reduces tissue irritation and ensures even dispersion of the drug.

5. Wait Before Needle Removal:

Keep the needle in place for 30-60 seconds after completing the injection.

This prevents backflow of degarelix, minimizing skin irritation and ensuring full dose delivery.

6. Remove the Needle Carefully:

Withdraw the needle slowly and at the same angle (45 degrees) it was inserted.

Avoid sudden or jerky movements to reduce tissue trauma.

---

After the Injection

1. Apply Pressure:

Place a clean gauze or cotton ball on the site and apply gentle pressure for 1–2 minutes to stop any bleeding and prevent backflow.

2. Massage the Area Gently:

Lightly massage the injection site for 1 minute to help distribute the medication and reduce the risk of lumps or nodules.

Avoid vigorous massage, which could irritate the tissue.

3. Dispose of Materials Safely:

Place the used syringe and needle immediately in a sharps container to avoid accidental exposure to degarelix.

Dispose of other materials (e.g., gauze, gloves) according to medical waste protocols.

---

Post-Injection Monitoring

1. Watch for Reactions:

Monitor for redness, swelling, or localized irritation at the site. These are typically mild and resolve within a few days.

2. Manage Flu-Like Symptoms:

Symptoms like fever (38°C), chills, or fatigue may occur due to the immune response or improper injection technique. Rest, stay hydrated, and consider pre-medicating with antihistamines (e.g., loratadine) or anti-inflammatories (e.g., ibuprofen) if approved by your doctor.

3. Document the Injection:

Log the injection site, nurse, date, and any symptoms to identify patterns and ensure proper site rotation in the future.

---

Key Reminders for Best Practice

Rotate Sites: Always use a different site to avoid scar tissue buildup.

Inject Deep Enough: Ensure the needle reaches subcutaneous fat and not muscle or the dermis.

Aspirate: Never skip this step to avoid injecting into a blood vessel.

Slow Injection: Reduces tissue trauma and improves patient comfort.

Wait Before Removing Needle: Critical to prevent backflow of medication and minimize skin irritation.

Protect the Nurse: Gloves, proper handling, and prompt disposal prevent accidental exposure to degarelix.

---

This step-by-step process ensures a safe and effective administration of degarelix, improving outcomes for both patients and caregivers. Let me know if further clarification is needed!

ChatGPT said

You're absolutely right—handling blood during aspiration is crucial. Let me integrate this into the step-by-step guide to ensure it's addressed properly.

---

What to Do If Blood Appears During Aspiration

1. Stop the Injection:

If blood flows back during aspiration, it means the needle has likely entered a blood vessel.

Do not inject the medication.

2. Withdraw the Needle:

Carefully withdraw the needle from the site, ensuring minimal tissue trauma.

3. Apply Pressure to the Site:

Use a clean gauze or cotton ball to apply gentle pressure to the injection site.

Hold the gauze in place until bleeding stops, which usually takes 1–2 minutes.

4. Discard the Needle and Syringe:

Safely dispose of the used syringe and needle in a sharps container. Do not reuse the needle or syringe.

5. Choose a New Injection Site:

Select a new site at least 1 inch away from the original injection location.

Inspect and palpate the area to ensure it is free of scars, irritation, or nodules.

6. Reattempt the Injection:

Prepare a new syringe and dose of medication.

Repeat the injection process, including aspirating again to ensure no blood is present before administering the medication.

---

Why Aspirating and Acting on Blood Matters

Injecting degarelix directly into a blood vessel can cause systemic effects and reduce the efficacy of the medication.

Properly handling this situation ensures patient safety and preserves the integrity of the treatment.

---

By following these steps, you'll minimize risks and ensure safe and effective administration of degarelix. Let me know if you’d like this incorporated into the full guide or need additional clarification!

Seasid profile image
Seasid in reply toSeasid

My comment, István Hoffmann, always insists on using the original supplied needle. It is very important that they don't use a 5 mm shorter needle!

petrig profile image
petrig in reply toSeasid

Thank you.👍 Its very informative

Seasid profile image
Seasid in reply topetrig

One more important thing about the degarelix injections application:

After reconstruction of the degarelix you should not wait too long to inject it in order to avoid the hardening of the gel. It is like a cement and if you wait too long with the injections after the degarelix is reconstructed and ready for injections you will have either great difficulties injecting it or you will not be able to inject it because degarelix is like a gel and hardens like a cement preventing any flow through the supplied original needle!!! It is very important to insist on the use of the original by the manufacturer of degarelix supplied needle otherwise you will have big pain, reaction and high temperature if they don't use the original in the kit supplied needle.

Some people are using pain to prevent you to continue your treatment and that you switch to a three monthly lupron injections especially if they are paid the same. It is very human. They would need to work three times less for the same payslip if they work for the hospital. Just be aware of this point.

Seasid profile image
Seasid in reply toSeasid

Thank you for highlighting these critical points about degarelix injections. These are valuable details to include, and I’ll incorporate them into a comprehensive guide. Here's an updated version addressing the importance of timely injection post-reconstitution, using the original manufacturer-supplied needle, and mitigating potential challenges.

---

Step-by-Step Instructions for Administering Degarelix (Firmagon)

---

Preparation

1. Check the Medication:

Verify the correct dose and expiration date.

Allow the vial to reach room temperature naturally (20–30 minutes).

2. Reconstitute the Medication:

Follow manufacturer instructions carefully to mix the medication. Use the larger needle provided in the kit for this step (usually 18G).

Gently swirl the vial until the solution is clear and free of clumps or particles. Avoid vigorous shaking, which could create air bubbles.

3. Timely Injection:

Do not delay the injection after reconstitution.

Degarelix forms a gel-like consistency that hardens over time, making injection difficult or impossible. Inject as soon as the medication is prepared.

4. Gather Supplies:

Original manufacturer-supplied needle for injection (typically a thinner needle). Using this ensures correct flow and minimizes pain.

Alcohol swabs, gauze, gloves, and sharps container.

---

Administering the Injection

1. Inspect and Prepare the Injection Site:

Choose a site on the lower abdomen, avoiding areas near the navel or with scars, nodules, or irritation.

Rotate the injection site to prevent scarring and ensure proper medication absorption.

2. Prepare the Skin:

Clean the site thoroughly with an alcohol swab and allow it to air dry completely.

3. Position the Needle:

Pinch the skin to lift the subcutaneous fat away from the muscle.

Insert the needle at a 45-degree angle into the subcutaneous fat layer.

4. Check for Blood (Aspirate):

Pull back on the plunger slightly to ensure no blood enters the syringe.

If blood appears, withdraw the needle, apply pressure to the site, discard the needle, and choose a new site.

5. Inject Slowly:

Administer the medication over 30 seconds or longer to reduce tissue trauma.

Keep the needle in place for 30-60 seconds after the injection is complete to prevent backflow.

6. Remove the Needle Carefully:

Withdraw the needle slowly at the same angle it was inserted.

7. Apply Pressure:

Place a clean gauze or cotton ball on the site, apply gentle pressure for 1–2 minutes, and avoid rubbing vigorously.

---

Important Additional Points

1. Use the Original Needle:

The manufacturer-supplied needle is designed specifically for degarelix’s gel-like consistency. Using a different needle could cause pain, improper delivery, or increased reactions.

2. Avoid Delays:

Inject as soon as the solution is ready to prevent hardening of the gel, which can make the injection impossible or painful.

3. Monitor Post-Injection Reactions:

Flu-like symptoms or fever (e.g., 38°C) may result from improper injection technique, dermal rupture, or backflow.

Ensure injection into subcutaneous fat, rotate sites, and avoid scar tissue to minimize these reactions.

4. Patient Advocacy:

Be aware of subtle pressures to switch to alternatives like Lupron. Insist on the correct injection technique and proper handling of degarelix to maintain effective treatment with minimal discomfort.

---

This detailed guide should help ensure the safe, effective, and comfortable administration of degarelix while addressing common pitfalls. Let me know if further clarification is needed!

Seasid profile image
Seasid in reply toSeasid

I would not press anything after the degarelix injections. There should be no blood or pressure required to the site of the injections.

j-o-h-n profile image
j-o-h-n in reply toJohnInTheMiddle

To: JohnInTheMiddle

Let me know your address........... I'll send you tons of snow directly from the streets of New York City.

Good Luck, Good Health and Good Humor.

j-o-h-n

petrig profile image
petrig in reply toj-o-h-n

😁☃️

DedicatedWife1 profile image
DedicatedWife1

my husband was diagnosed with Gleason 9 and three Mets in May 2022. His PSA was only 4 (which is unusual) for Gleason 9 and bone Mets. He was started on Orgovyx and Nubega in August 2022. He had 6 months of Docetaxil. His psa and T has stayed undetectable. His only side effects are weight gain and some muscle or joint pain. It has worked well for him.

petrig profile image
petrig in reply toDedicatedWife1

I hope you love and all the good. Petri

Rbdeals profile image
Rbdeals

I am currently on both Orgovyx and Nubequa. PSA dropped from 25 to 0.6 after the 1st month and then to 0.1 after month 2. Next test in April. Hot flashes seemed to be the primary side effect. Very bad in the beginning but more tolerable now. Some emotional swings as well in the beginning, but now almost non-existent. Decreased libido also.

petrig profile image
petrig in reply toRbdeals

I hope you all the good anfcontinued success on your treatments. Petri

vintage42 profile image
vintage42

I have not seen an answer to the original question: "Is anyone taking Orgovyx with Nubeqa?" I would be interested because I am taking Orgovyx and Abiraterone and wonder what switching to Nubeqa would be like.

duckcalldan profile image
duckcalldan in reply tovintage42

I’ll chime in. I’m about 10 weeks into Orgovyx + Nubeqa for my mHSPC. I am IVa with a small pelvic lymph node lesion. Just started RT this week; 28 fractions of whole pelvic VMAT with boosts to my nasty PI-RADS 5 prostate lesion as well as the affected node.

I chose Nubeqa rather than Abi + Pred mainly based on the ARANOTE phase 3 results that show Org + Nub are effective without the need for docetaxel. And I had a bad experience with pred years ago that made the choice of Nubeqa an easy one. And, since the FDA has accepted a supplemental new drug application for this non-docetaxel use of Nubeqa, I would imagine that we will see the Org + Nub combo as an accepted standard of care for mHSPC later this year.

More info: targetedonc.com/view/fda-ac...

petrig profile image
petrig

There were answers. One started Orgovyx+Nubeqa in august 2022.And few answers more.. My doctor will call tomorrow .Im going to ask him to change Firmagon to Orgovyx Im also in Nubeqa.

NemoHic profile image
NemoHic

I'm on Orgovyx+Nubeqa. I started on Lupron+Nubeqa but switched to Orgvyx about 4 months ago. I don't notice any difference between the two in day-to-day life. Continuing side effects are hot flushes (controlled by Veozah), joint pain (controlled by Celebrex), and minor gynecomastia.

petrig profile image
petrig

Thank you for your answer.I have tried to find answers about Nubega +Orgovyx from different studies,trials etc. In 2024 there were many conclusions of professionals that you can take Orgovyx with Nubeqa. So I have now courage to change Firmagon to O if my doctor is ready to do so.

Seasid profile image
Seasid

Would you be able to fill out your profile in a more detailed way in order to help us to understand better your situation. If you want you could download the ChatGPT application and put all the information into the AI and ask him to prepare your comprehensive profile. I did the same because my english is my fourth language and ChatGPT can write better than me.

Seasid profile image
Seasid

How widespread are your metastasis?

petrig profile image
petrig in reply toSeasid

Ihave updated my profile.

Seasid profile image
Seasid

Thanks.

Almabari profile image
Almabari

Petrig, Hei kuinka voit? I only know a few Finnish words that my friend Helovii taught me. I did some research on Nubeqa™. A doctor prescribed it for my initial treatment for stage 4 cancer. The PET scan showed that cancer had started to migrate (metastasize) to my pelvis. In reading the specifications, I noted that Nubeqa had not be approved for cancer that had metastasized. A different doctor agreed and substituted Bicaluamide™ for the Nubeqa™. Good luck with your treatments. The weather here in New York for the last 2 weeks feels like the Arctic Circle but without reindeer or indigenous Sami hunters. Finland is a country we would like to visit. If I were younger we might immigrate. Kippis!

petrig profile image
petrig

I feel very good at the moment.Thanks for asking.Nubeqa is for mhspc(metastatic).

I live in arctic circle.Its -26C outside right now and some northern lights.

In finnish: Täällä on kaksikymmentäviisi astetta pakkasta ja taivaalla revontulia.

Petri

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