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Just got back from Urologist office - surgery decided (PET SCAN RESULTS IN)

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Posted 4/11/2013 3:54 PM (GMT 0)
David, here's some info about the B&O suppositories from a physician's reference guide:
*****
Drug Category: Analgesic Combination. Urinary Antispasmodic Agent.

Use: Relief of moderate to severe pain associated with rectal or bladder tenesmus that may occur in postoperative states and neoplastic situations. Pain associated with ureteral spasms not responsive to non-narcotic analgesics and to space
intervals between injections of opiates.

Dosing (Adults): 1 suppository rectally once or twice daily. Max 4 doses/day.

Supplied: #15 A: Belladonna extract 16.2 mg and opium 30 mg. #16 A: Belladonna extract 16.2 mg and opium 60 mg.
*****

Three doses a day is close to the maximum dosage. Good that you're checking with the onc to see how this fits with your other meds.
Posted 4/11/2013 7:23 PM (GMT 0)
Just came back from talking to the head pharmacist at Walgreens. (All my normal meds are from the same CVS for over 12 years).

She said they do not stock this med, never had a call for it, and she thought it was unusual to see it written. Plus, she looked at the script, the doctor used 2012 instead of 2013, so she said the script was useless as written. I will have to take it back to my uro's office tomorrow anyhow.

Yes, its true, Medicare will not pay for it. At Walgreens, if she could get it, it would be even more expensive, over 30 bucks per suppository. That is ridiculous price, that would be 90 bucks per day as prescribed.

She was also concerned about the new med, on top of my Fentanyl 100's, the Loratabs, my Ambien, and my Tranzene at the same time. Glad I didn't rush out and fill this and start using it. Again, regardless of supply or price, not going to consider taking this without my oncologist's approval.

She said that you wouldn't even want to use them more than 2-3 days, because they are extremely addictive by nature, and can give you terrible BM problems. Doesn't sound promising to me at this point.

david
Posted 4/11/2013 7:28 PM (GMT 0)
snow,

as far as the lump is concerned, yes it would be nice to see the PET scan image of it before the surgery, but it wouldn't change the need to have it removed. it needs to come out, and soon, in case it is the dreaded porocarcinoma again.

I have a "life or death" number for my oncologist, but I don't feel this is time to use that number. Sure I will have the results soon enough, I seem to have a lot more patience than you do, lol.

My doctor rotates satellite offices on a daily basis, so he's not easy to track down, that's why my normal contact is his nurse. But even she hasn't responded after 2 e-mails and a phone message.

david
Posted 4/11/2013 7:42 PM (GMT 0)
UPDATE 3:40 pm THURSDAY - GOT PET SCAN RESULTS BACK

I was just starting an e-mail directly to my oncologist when his e-mail came in. He apologized for the delay, he was off last week, his nurse was off this week. He knows the radiation guy that read this scan, and said he was thorough.

Bottom line: no evidence of mets anywhere in my skeleton, or on any organs. Nothing else significant reported.

I printed it off, and will read the details to see what else we can glean from it. He said based on this scan, he's confident we should continue to observe my current PC situation, with no advanced treatments needed or recommended by him. Works for me.

There, it worked it self out, sometimes you just have to be patient.

Also, he doesn't want me to use the opium suppository that were just prescribed to me, said it could be too dangerous with the amount of Fentanyl I am on. So my gut feeling there was correct, that ends that problem too.

He agrees that the lump needs to be removed and examined closely.

david
Posted 4/11/2013 7:46 PM (GMT 0)
??? I don't understand why a trained Pharmacist would say that about the suppository being "addictive" when you are on the strongest possible medication out there with the Fentanyl. As well as Lortabs (Hydrocodone) is the number one medication that is abused.


You don't seem to have any issue with addiction so there isn't any reason to be worried about that.

And as I have mentioned a few times, you can easily stop and switch to the suppository instead of the Lortab in case they are worried about you being on 3 meds. As well as do the lower mg and start with one a day. I don't know of any Dr. that would be against doing that.

I have to say it seems like you have been against this from the start which is a shame as it is a very helpful medication for the exact issue that you have with the spasms. I have had two friends that have used this medication before and it has helped them greatly.

I guess if you aren't going this route then you can still try the nerve pain medications or other muscle relaxers as there are many you haven't looked into yet....but I think your Urologist was smart to prescribe this medication to try and you seem to respect and trust him as a Dr.

Also, as we have said, your Urologist can contact your insurance to show that you "medically need" this medication. We have done this a few times for my mom and certain meds...all it took was a bit of paperwork and all set.

And in regards to your PET scan...I have plenty of patience:) I am just surprised as your Oncologist has done this a few times where he seems to make you wait longer than any other patient I know for test results which is a shame.

Hope things go well with the upcoming surgery....

Posted 4/11/2013 8:02 PM (GMT 0)
Again..I was typing at the same time as you were so didn't see your updated thread...

That is great news about the scan! I can't say I understand your Oncologists reasoning that this medication is "too dangerous" with your Fentanyl...It's not much stronger than the 60mg Lortabs you take each day....so that doesn't make sense to me as you could have switched them out to try?

But oh well....I think it would have been a great thing to try and see if it worked as there were ways to do this.

As I wrote, hopefully you can try the different nerve pain meds or muscle relaxers as there are many from which to choose. These are much more effective for "spasm" or "nerve" type of pain than an opiate (pill or patch form) so that is why it doesn't even seem to respond to going all the way up to 100mcgh of Fentanyl which didn't seem to phase you much.


We will keep up the prayers for the upcoming surgery...Does this mean that you will be missing out on the GFMPH meet-up? I hope you will still be able to fit in a few days:)

Post Edited (Snowbunny21) : 4/11/2013 2:42:19 PM (GMT-6)

Posted 4/11/2013 9:00 PM (GMT 0)
David,

That is really great news about your PET scan! While it still doesn't tell us what is going on with the bladder, at least we know the cancer has not spread! Now lets take care of the lump, and move onward to Duke to find the answer to the riddle of some of your symptom

Kerry

Posted 4/11/2013 9:45 PM (GMT 0)
David -

Congratulations on the good PET scan results. I confess that I was fearing bad news, but am very pleased to see you get some good news for a change!

Best of luck with your upcoming surgery. We'll expect a post from recovery. ;)

UG
Posted 4/11/2013 10:27 PM (GMT 0)
snowbunny: no disrespect intended, but this is why we are not doctors or pharmacists. and no, I was not against this new med, I was excited about the prospect when it was first mentioned by the urologist. I had never heard of it, and it wasn't until I looked it up on the net, did I know what it was and what it was made up of. I just had a feeling my oncologist would have an issue with it, and he did, and he is serving as my PCP, as well as my oncologist and PM, and I trust him completely. If he feels it would be dangerous (it was mentioned that in suppository form, the opium is having direct physical contact in that region).

no, I have no addictive issues with any of my meds, and according to my doctor, with the amount of pain my body is constantly fighting, I shouldn't have any. He has told me the symptons to look for, if the pain sources suddenly healed and the body was absorbing the pain meds needlessly, and I have none of those symptons.st

I am taking the script back to the uro tommorw, and see if he can see me for a minute. the script still has the wrong date, and I will tell him what my oncologist said about it, and tell him how expensive it is. perhaps he will have another suggestion up his sleeve.

I am a big believer in team work with my issues, so its important to me that each of my doctors know what the other one is up to, to prevent potential problems.

Appreciate your input. Between what the pharmacist said and what my doctor said, seems pretty convincing to me that its not a good idea to proceed with the b&o suppositories.

david
Posted 4/11/2013 10:46 PM (GMT 0)
That is great news about your scans!

I gather the upcoming surgery is very minor (like a biopsy)?

Hopefully what they find is insignificant!

All in all, a very good day for you!

Mel

Posted 4/11/2013 11:01 PM (GMT 0)
That's very good news on the PET scan, David, and I'm glad you found out about the suppositories.  Here's hoping you find some other way to get rid of the bladder spasms.  That's a very difficult situation.

As far as worrying about becoming addicted to the narcotics, I agree that at your level of pain you're not seeking out these meds for the "buzz," so addiction is not a major concern.  The only danger I encountered after several months using Oxycodone was the terrible insomnia I ran into for a month when I quit using them.  There was a degree of temptation to take an Oxycodone in order to get back to sleep, but I knew that would have been a terrible idea and never gave in to it.

I suppose that when you finally get beyond this pain, and I sincerely hope that day comes soon, you may have to deal with something like that, but I'm sure you'll handle it well.

Posted 4/11/2013 11:05 PM (GMT 0)
No offense taken...

Just like you all are lay experts in PC, I've been in PM for almost 12 years now and am great friends with my PM who is Board Certified and Fellowship trained in that area. So I have a lot of personal experience as well as hours upon hours of listening to him and learning about medications/PM on our lunches and spending time with him and his family. But you are correct...non of us are medical professionals.

Was only trying to help in that this medication is no different than anything else you take and is a lot less strong than the Fentanyl so didn't want you to worry about that aspect. And the entire point of the suppository is for the medication to have "direct contact" in that region that is why it works so well for spasms. Just like there are topical medications that work on the specific area. And as I mentioned...opium is the derivative of all the "opiate" medications..

This is from rxlist.com about the B and O suppository....Opium contains more than twenty alkaloids, the principle ones being morphine (10%), narcotine (6%), papaverine (1%) and codeine (0.5%).

That is why I mentioned it is about the strength of your daily Lortab intake. Every other pain med out there is less in strength than your Fentanyl.

I would have though your Urologist would know what medications you are already on and take that into consideration before he even wrote out the prescription. As well as I was thinking your Oncologist would call him directly to discuss the matter before deciding, especially if he doesn't have experience with that medication.

All of this is neither here nor there as it's not something that you want to try and that's ok. I just wanted to have this information out there in case anyone else comes across this medication so they don't freak out over the term "opium" as people have a strong reaction to this word in general. Same thing with "morphine" as people think of the hospital but it is much, much stronger when in IV form than in pill/suppository.

Again...it's always your choice for what medications and treatments and I respect that choice. 

Some nerve pain meds are Neurontin, Lyrica or Cymbalta. Muscle relaxers are Flexeril, Robaxin, Skelaxin, Baclofen, Soma or Zanaflex.  

The best news of the day is your PET scan results! This will hopefully take away a LOT of worry for now and concentrate on the upcoming outpatient surgery that I pray is uneventful, quick, and confirms that there is no cancer.

Hope you will celebrate this weekend with your family!!

Post Edited (Snowbunny21) : 4/11/2013 5:27:17 PM (GMT-6)

Posted 4/11/2013 11:08 PM (GMT 0)
thanks Kerry and Upstate,

to be honest, my doctor was not expecting mets, according to his thinking about my current pc situation, but even he wanted to make sure that something wasn't going on. he still believes that I have lots of micro-mets, that together add up to my rising PSA number, but none of them are large enough to show up on scans. obviously, as sensitive as the PET scan is, this must be true. depending on how fast the PSA continues to rise over time, at some point, one or some of these micro mets may show up on a future scan.

since I am dealing with such serious QOL issues, i.e. chronic pain and chronic fatigue, he's not eager to push me into treatments, i.e., HT or Chemo, until he feels that I really need it. I still agree with this thinking, as its hard enough day to day existing as it is. this scan gives him the confidence that we are still on the right track, as far as I go.

my case has been difficult and contrary acting from the start, and continues to be so. that is one of the problems with certain gleason 7 cases, they can be more difficult to control and stabilize then some that have Gleason 8 and higher cases. he has told me before, that many gleason 8 cases run a very predictable course, thus making treatment choices and plans easier to follow.

david
Posted 4/11/2013 11:17 PM (GMT 0)
mel - its more than a biopsy, he may have to cut wide and deep to get all the growth or tumor out to be examined. whole thing should be less than 30 minutes, unless he slees more growth once he's inside the area. still considered a day surgery

snow - I respect your PM knowledge, you know your stuff, but you also know how personalized meds are in our CP world. plus I have the added complications of severe radiation damage, multiple surgeries, and dealing with the prostate cancer at the same time. chocked full of issues, lol. seems endless. btw, my uro had my current drug list right in front of him when he made the suggestion. but when I asked him if there could be any problems, he hesitated and had a blank look on his face, so that made my defenses come up - and told me I needed to check this out real good first. plus, regardless, I would have wanted to clear it with my oncologist/PM first - that is the right thing to do in my opinion. we have mmutual respect for each other that way

clock - you did the right thing by not taking that pill. I agree with your thinking. Not one time, have I ever taken an extra pill of any type, no matter how severe my pain may be at the moment, I follow the dosing literally and by the clock.

david
Posted 4/11/2013 11:52 PM (GMT 0)
David:

I lost track of your PSA. The latest I see in you profile is 4/2012. Haven't you done one since then.

Again, in light of your fast-rising PSA, that negative scan is HUGE!!!

I know you've decided against HT, at least for now. But I might add that Scholz/Lam say that if one gets on HT BEFORE evidence of mets show on a scan, they often have a longer PC "remission." I know you have mentioned that with a fast-rising PSA then HT probably would not work for long. I have not heard that formally, although it makes sense. But, regardless, with your negative scan I would be hopeful that maybe your PSA is no longer rising so fast. It might be worth checking.

Mel
Posted 4/12/2013 12:09 AM (GMT 0)
Good news David congrats on no mets..... Still, the P.S.A. rise has to be coming from somewhere so still I worry for you.
Posted 4/12/2013 12:12 AM (GMT 0)
mel,

I haven't updated my profile, need to do that. last PSA was in December 2012, it had risen to 40.x. My situation and Sonny's are still very similar - both with failed surgery and radiation, and high BCR PSA's, but no evidence of mets. I believe he is still doing with his doctor what I am doing with mine. Fortunately for Sonny, he's a healthy and fit guy, and not dealing with my other issues, I am very glad for him in that respect.

I had mentioned to you and here at HW several times in the past, that my doctor has seen a few cases of men with advanced PC, with PSA's as high as 100, with no evidence of mets. One day, I am certain we will have to pull the HT or Chemo trigger, but not now, this is buying me time without further diminishing my already lower QOL. I will take what I can get. With this PET scan, makes me more confident, that for me, and perhaps just me alone, we are doing the right thing.

david

I see him again in May (?), if he wants to do another PSA, we will do one, if not, that's ok as well with me
Posted 4/12/2013 12:14 AM (GMT 0)
oops, todd, didn't see your post till now. all I can say, and I think we can agree, no two PC cases really are or run the same. my situation is unique to me (and appearently sonny's case as well). trust me, my doctor is sharp, he wouldn't hesitate to pull the trigger when he feels the time is right, and I will consent to do what he thinks is best for me.

david
Posted 4/12/2013 1:19 AM (GMT 0)
David,
Great news on the Pet scan mate.
Good luck with the surgery, you've been there before.

Mike

Posted 4/12/2013 1:21 AM (GMT 0)
thanks mike, the surgery part never bothers me, I kind of like being put under, only time I am pain free and at peace with the world. then they have to wake me up, lol.

david
Posted 4/12/2013 2:01 AM (GMT 0)
David,
Very glad to read there's no evidence of mets. Good news!
Posted 4/12/2013 2:12 AM (GMT 0)
Great scan!
Posted 4/12/2013 2:24 AM (GMT 0)
thanks, guys. still think I have a "glow" from that scan, its a new look for me.

david
Posted 4/12/2013 3:49 AM (GMT 0)
Great news david...a clean scan is something to celebrate! Good luck with your surgery as well....chris
Posted 4/12/2013 9:40 AM (GMT 0)
So happy to hear about your scan...
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