Doc noted 4cm (1.58") plaques engulfing entire diameter of shaft. Anyone else?

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Jscout

(Yes, I posted the Doc Notes as a Reply in one of my last posts, but I would really like to chat with other members with similar cases. Pls speak up if you have anything like mine, I could really use some comradeship right about now!)

I've been talking about having a large growth that essentially takes up 1 third of my shaft in my last few posts. I looked up my 3rd Doc's notes from July 30th and my 4th Doc's notes from back on August 6th, figured I would post them for reference. My Peyronie's has spread considerably since the Doc noted a 4cm (1.58") plaque. It's now at least 2 1/4" long and consumes the entire shaft and is protruding into the Glans/Head. When I say "consumes the shaft", I mean the plaque has spread completely thru the entire shaft for a 2"+ section. When I'm flaccid, it is very visible.

This isn't a "contest" that I want to win. I don't want to one-up another guy. I was just as scared when I had a grape-sized lump and a 20 degree curve as I am now with a 2"+ mass and large visible golfball sized bulge when flaccid. This Group is very important to me, I don't want you guys to think I'm bullshitting ya'll or trying to prove anything for some strange reason. It just means alot to me to be validated w what I'm experiencing. I hope that makes sense, and thank you all for being part of this very helpful Group!

From the 4th Doc at OHSU on August 6th:
GENITOURINARY: The penis is circumcised with 4 cm evidence of plaques. The urethral meatus is normal. The testes, epididymides, and cord structures are normal in size and contour bilaterally. The scrotum is normal in size and contour.
IMPRESSION
(N48.6) Peyronie's disease (primary encounter diagnosis)
Had a long discussion regarding diagnosis and treatment options for Peyronie's disease. We discussed capturing images of his erections from 2 angles monthly (we discussed privacy and security of images if he elects to send them to me). We also discussed PDU (with ICI). We discussed oral medications, injection therapy, plication, grafting procedures, and IPP (+/- grafting).
I agree with Dr. Meyers care and would obtain an MRI. If there is any infiltrative component then I would biopsy. I believe this is more likely very rapidly progressive Peyronies Disease and I would consider Xiaflex first.
We discussed incision and grafting.
Spent 60 minutes in direct face to face consultation


From the 3rd Doc at NW Urology on Aug July 30th:
7/30/19 -
He has developed additional thickened plaques on the penis that are indurated and have worsened his curvature. He also has several indentations on the shaft as well. He has a >30 degree rightward curvature. We considered Xiaflex to treat his fibrosis but the location and evolutionary nature of his plaques makes me hesitant to proceed with this. Furthermore, he has a large volume of plaqueing and it would take multiple rounds of injections before we start to see an improvement. We also discussed the possibility that this could be a penile malignancy, although it is rare for this to initially develop deep within the tissue. We could evaluate this with a needle biopsy. Unfortunately, this has the risk of inflaming the surrounding the tissue and causing additional fibrosis of the shaft and causing ED by creating a fistula. We discussed various options that the patient brought up, including stem cell injections, Hybrid Medical H100 Topical Cream, imaging, and prolonged fasting diet. I explained that I don't have extensive experience in these Peyronie's treatments. We discussed the option of seeking a second opinion from Dr. Hedges at OHSU, Dr. Levine in Chicago, or Dr. Goldstein in San Diego, whom he has had a phone call appointment with and did not enjoy. He will continue to consider a penile biopsy for now. I will contact Dr. Hedges and discuss the patient's case with him. We will have a penile MRI completed to obtain documentation of the plaques. Given the complexity of this issue, I would recommend the patient complete the biopsy and Xiaflex treatment with Dr. Hedges. Pt agrees to follow up with Dr. Hedges at OHSU
~Diagnosed Nov 2018, right before my 40th B-day
~Frustrated loving Wife
~Pain w erections
~NO medical progress
~Was naturally curved up like 🍌, straight at initial diagnosis, now curved right & twisted 😢
~Denial/Depressed cycle 😭
~Mass growing!!

TonySa

You sound pretty well informed, just want to make sure you check out the survival guide.  Have you considered getting started on pentox, low dose nightly PDE5i and traction or modeling to halt the progression as much as possible while considering xiaflex, surgery and the like?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Jscout

Tonysa,

The Survival Guide has been a great resource! I was on Pentox, Cialis, and Vitamin E for several months. The Pentox tore my gut up pretty bad, but not bad enough to stop taking it. Unfortunately none of them seemed to help slow the progress (or maybe it would be even worse if I hadn't of taken them??)
Currently, I take Pentox and 5mg Cialis as-needed for sex 1 to 2 times per week on average per the Doc.

I have a few traction devices, but with the plaque extending into the Glans, I haven't been able to use them without excessive pain. I even tried one of the suction cup styles, which I did like better, but still too much pain to be feasible.

I really like my pump, the SOMAerect w 3 cylinders. I try to pump on days we might have sex, as it really lessens the pain caused by an erection and helps me obtain fuller erections. I should be pumping more often. Gotta admit, the depression is difficult, and pumping twice a day is really putting it "in my face".

I'm blessed to have an amazing Wife that loves me very much. She's a fitness trainer in her prime at 37yrs old, it hurts my heart & soul to not meet her sexual needs, but she thanks me genuinely whenever we do have sex
~Diagnosed Nov 2018, right before my 40th B-day
~Frustrated loving Wife
~Pain w erections
~NO medical progress
~Was naturally curved up like 🍌, straight at initial diagnosis, now curved right & twisted 😢
~Denial/Depressed cycle 😭
~Mass growing!!

TonySa

Would an antacid help w the pentox side effects, something like aciphex?  Also nightly low dose cialis or viagra helps to remodel the plaque. If twice daily VED is too much naybe try one time daily for 30", pump and hold for 5", release and repeat 3 times...backoff or stop if any discomfort/pain.  All need to be done daily for several months before you should see improvement.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.