Thoughts on Muse or Penile Injection

mllc16
mllc16 Member Posts: 7 Member
edited March 18 in Prostate Cancer #1

I was diagnosed with prostate cancer in the summer of 2022 at the age of 62 not because of symptoms but a doubling in PSA over a year. At the time of diagnosis I had a PSA of 3.8. Biopsy results came back with Gleason scores of 4+4 on both sides and scans showed a slightly enlarged prostate and a lesion with a PIRAD of 5 but no indication of spread beyond the prostate. I then had a Decipher test completed and it came back at 0.89. With increasing, not good, evidence I opted for RRP surgery in March 2023. The surgeon indicated things went well and that nerves should have been spared. Cancer had extended beyond the prostate but the margins and lymph nodes were clear and at nine months post surgery my PSA was still undetectable.

Recovery has gone well with the exception of no erections. I have been using a VED daily and had been on both Tadalafil and Sildenafil. I am able to engorge my penis with the VED but no natural erections and after living with constant hangovers for nine months stopped using PDE5s. I have discussed both MUSE and injections with my urologist but have yet to initiate using them. My urologist tells me he has been unable to get a pharmacy to fill a MUSE prescription and that injectables would need to come directly from a formulary. My insurance does not cover anything tied to ED and what I have found related to pricing of these drugs is not encouraging.

I apologize for all the background but I am hoping it will provide a basis for the following questions. Has anyone found a supplier for MUSE and if so estimated costs? For injections how have you gone about training? My urologist says I would be trained at his office and could either try the first injection there or privately at home. Any thoughts on doing this in a doctor's office verses home the first time? If done in a doctor's office and it is successful, how does one go about being able to drive home if the erection lasts? Again, do you have any suppliers or brands that you are happy with and any possible costs? Finally, as stated, I have had absolutely no erections coming up on a year either naturally or through the use of PDE5s. Is it even reasonable to hope that an injection would provide an erection?

Comments

  • jc5549
    jc5549 Member Posts: 58 Member
    #2

    Hey mllc16,

    Those are great questions, I, too am on oral meds and the vacuum device hoping to recover function. Like you I may be looking at needing more but I am still much earlier out from surgery

    I would think doing a test injection in the office with your urologist is the safest way to learn the location to inject on the penis, and expectations of how to perform a procedure that is intuitively so wrong. I believe he/she will give you a lower dose the first time so that you only have a partial erection. The first dose should be for both education, and to predict how you are going to respond to the medication. Injectable doses can titrate up for a more lasting and rigid effect. They can also be formulated with 1,2, or 3 (trimix) agents. Compounding pharmacies are available in most cities and should be able to make you a vile suitable for multiple doses. Your urologist will prescribe how many agents and what the mix and strength will be. You can store the vial in the refrigerator between use.

    I’m sure there’s an out-of-pocket cost, perhaps, trying around and determining the value may be something you have to go through to see if it’s worth it to you. I found this video on YouTube from the Cleveland clinic that seems reputable.

    i’m sure there’s an out-of-pocket cost, perhaps, trying a round and determining the value may be something you have to go through to see if it’s worth it to you. I found this video on YouTube from the Cleveland clinic, it seems reputable.

    https://youtu.be/-KGLryQMdsk?si=cevnqXn8cpcuNwqM

    Good luck,

    jc

  • mllc16
    mllc16 Member Posts: 7 Member
    #3
    https://csn.cancer.org/discussion/comment/1714075#Comment_1714075

    Thank you. We covered a fair amount of this at my last appointment though my urologist seemed far more comfortable with me doing a first round at home than I was and I just was not ready to start another med after 10+ months of feeling crappy using PDE5s. We also talked about whether a low testosterone level could be an issue but my urologist said they would not consider even discussing supplements for at least 2 years post surgery and no detectable PSA.

    I have my one year post surgery PSA check and physical coming up in April where we will most likely move toward penile injections if nothing has changed. In our last discussion it sounded like costs would be in the $200-400 range per prescription but that has an immense amount of variability based on the formulary, the brand and how much is needed. The meds come kitted with vial(s), syringes, needles and alcohol pads. Depending on how much is needed a person should be able to get multiple injections out of a single vial. Based on our conversation I was getting the impression that I will be looking at $50-$100 a go. My hope is to hear from others that have gone this route to both align myself and to prepare me so I get the information I need before plunging (pun intended) in.

    Again, thank you for your reply and the best of luck on your recovery. It is a journey but it gets better everyday. Stay positive and talk, talk, talk.

Discussion Boards