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Got results back from PET scan

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Posted 4/11/2013 6:25 PM (GMT -5)
It only took 10 days, but my oncologist e-mailed me the results of my recent PET scan.  The good news is that there is no evidence of mets in any of my bones or organs.  While I still have prostate cancer, it has not spread in any way large enough to be picked up by a scan.  This is great news, for both me and my doctor.  So he will continue to monitor me in the months ahead, and due to my already poor QOL issues, he is not recommending any advanced cancer  treatments for me.  He will eventually, when the cancer does show up in any future scans.  This buys me more time.

Also, my surgery has been scheduled for April 25th, Thursday, at 0800.  I go to pre-op on the 18th.  It will be done at St. Francis Hospital (downtown) in Greenville.  This will be my 10th op there since 2008.  The hospital is less than a 15 minute drive from where I live.

Glad the scan is behind me, we did not expect mets to show up at this point, but as my doctor said in advance, he's not a mind reader, and even he wanted to make sure  that his thinking was correct.

All in all, not a bad day.  Now only if we could do something about the painful spasms, they are becoming longer and longer.  I had one yesterday that was fully 5 minutes in duration.  Honestly thought I was going  to split in two.  I still feel, when the right surgeon is found, that removing that heavily damaged and disconnected bladder is going to be the only long term solution.  In the hands of the right surgeon, I am willing to take the surgical risk just to be rid of this.  Been dealing with them for 4 1/2 years, and never gets any easier.

david in sc

Posted 4/11/2013 6:54 PM (GMT -5)
Hi David That's great news that the scan turned out good. I am sorry that you hurt so bad when those spasms happen. Hopefully you can find a qualified surgeon to get rid of that bladder that is only causing you pain really soon.

I will keep you in my prayers. Please remind us when the day of the surgery gets close. I know my memory is terrible. Take care.

love and hugs
Loretta
Posted 4/11/2013 7:27 PM (GMT -5)
hugs and thank you, Loretta
Posted 4/11/2013 7:42 PM (GMT -5)
Great News on the PET Scan! wow, so very glad for you on that...Happy Dance on that yeah
Keep us posted as your surgery date gets closer, you are in my thoughts and Prayers and celebrate this bit of good news...Prayers and hopefully this surgery will take care of some of those muscle spasms, can hope for it...
Posted 4/11/2013 8:34 PM (GMT -5)
thanks chart. the surgery will have no bearing on the spasms issues, that's related to my heavily damaged and unused bladder. on the surgery, the "growth" or tumor if be the case, needs to come back benign.

david
Posted 4/11/2013 8:38 PM (GMT -5)
Big huge sigh of relief!! I'm sure it was heavy on you and your wife's minds. I'm so glad for you.

Vickie
Posted 4/11/2013 8:41 PM (GMT -5)
thanks Vickie, didn't expect to find mets, but it was in the realm of being possible at this point, this buys me more time, for which I am thankful.

david
Posted 4/11/2013 10:33 PM (GMT -5)
David I'm so glad to hear that there is no mets at this time. I'm sure that all of you are relieved to hear this news.

I'll be praying that your surgery goes well and this tumor that they are removing is benign. You will in my prayers daily.

I'm glad that you and your wife were able to get away for your anniversary, 39 years is a long time. We will celebrate our 28th on June 8 and I'm hoping I'm feeling a bit better that we can just go and stay overnight somewhere close to home.

As for your bladder spasms I pray that you find the right surgeon to remove your bladder and stop all the pain you are having to deal with. I know you mentioned your urologist gave you a script for a suppository to try to help with the pain. I saw on the PC thread that you couldn't get it filled as it wasn't covered and you didn't want to fill it and pay out of pocket in case it didn't work.

Could you just get a couple and try them? I hate that you suffer so bad with your pain and I know your QOL isn't good. I like you suffer from serious pain and I have almost nill QOL. David, I would like to offer to send you a gift card so that you could get the script filled and try it at least. If it works for you, maybe somehow it could be worked out that you could get it on a regular basis.

I offer this with no expectations of something in return David, My heart just breaks for what you have and are having to go through. Just want you to feel better. My email is in my profile you let me know, if that would be okay.

I'm glad about the PET scan, and praying all goes well on the 25tj.

Hugs,
Barbara
Posted 4/11/2013 11:23 PM (GMT -5)
Someone else on here said and I agree, you have an amazing amount of courage! I' m sitting up late tonight in fear about my doctors appointment tomorrow and your facing down surgery....your amazing...
Many prayers are with you.
Posted 4/12/2013 12:15 AM (GMT -5)
I am so glad that there were no mets. That is very nice to hear. I constantly think of you and Barbara and others that have things so much worse than I do. You guys are so strong and courageous to keep on going. You definitely give me strength and help me to find something good in my life each and every day. I consider it a blessing to know such wonderful people on here. I know that there isn't anything that I can do to take any pain away but my heart goes out to everyone. Keep us posted on how things go.

Much love and gentle hugs,
Lynn
Posted 4/12/2013 8:43 AM (GMT -5)
Barb, that was a sweet and sincere offer on your part. It's not a question of money per say. In the end, the prescription was dated wrong, so it's invalid anyway. And when I discussed its use with my oncologist, who is also my PM and serves now as my PCP, he said no to it, as he thought it would potentially be dangerous with my other meds. My wife is a nurse, and she was really upset with the URO for even prescribing something like this on top of what I am on.

I am taking the script back this morning, and see if I can talk to him about perhaps some other alternative. I would rather be safe than sorry with meds, even if it could have helped me.

28 years coming up for you, that's good. that seems a long time ago to me, lol, but hey, we are still newlyweds.

my best to you, I know you are in tough situations too, and you show such calm and grace about it. I still say, no one hear has it easy, just different fights and battles on different days.

david
Posted 4/12/2013 8:47 AM (GMT -5)
chart - I don't know if its courage, or stubbornness on my part, I was never a quitter with anything I have dealt with, as I tell others, perhaps I am just too dumb to duck, lol. as time goes by, I sense little pieces of my ability to fight back slipping away, but I feel that is normal too the longer something goes on.

lynn, thanks, but you are stronger than you give your self credit for, as well as the other members at CP, our situations are all different, so they can't really be compared. what is easy for one person, is difficult for another. trust me, I have my moments of weakness, doubts, fears, and even self pity, but I refuse to let those feelings take over my mind. I will only totally give up, when they close my eyelids and say its over with.

david
Posted 4/12/2013 9:26 AM (GMT -5)
Barbara...that was a very generous offer!!!

David...as I wrote on the PC board, I think that you could have easily just stop taking the 60mg a day of Lortab for now and try the B and O suppositories if they/you were worried about it being "too much" medication....It makes no sense that they have to "add" this to your current meds but substitute those two.

Same thing with knowing there is a lower dosage of the 30mg and at one a day to see how it works as he had given you the 60mg to take "up to" 3 times a day which is a perfectly normal dosage but if they thought it was too high.

Did you ask him about trying the lower dosage and starting with one?

I guess that so many of us just hate to see that there could be something that really works "directly" for spasms in that area that could help you not work out when there are easy ways to try it and be perfectly safe.

With you being on the Fentanyl at 100mcgh....every other medication like this is wayyyy down on the scale of strength.

So...we just hate to see you suffer when there are possible alternatives to try and thought this might be a really good one and hoping your Drs. would talk together to work out a solution. 

That's what we try to do on the boards....brainstorm about ideas and thoughts to discuss with one's Dr.


The other medications that I mentioned on the PC board...The nerve pain meds or other muscle relaxers are something that your Oncologist could call in for you to try so you wouldn't have to wait for an appt.

I would be asking him asap about all these other choices as you just never know if one of them could help with the spasms unless you try them.

So happy for the negative on the PET scan as that should allow some great breathing room for now even with the upcoming surgery you will know that nothing has spread if the lump is not benign. Thankfully the surgery will be a short one and home for the evening.

I didn't see you write on the PC board but will you still be able to head to New Orleans to meet up with the guys/gals for a few days as it's in between everything? I sure hope so!

We are all praying for more great results!!!

Post Edited (Snowbunny21) : 4/12/2013 9:23:57 AM (GMT-6)

Posted 4/12/2013 9:30 AM (GMT -5)
That's great news on the pet scan results David. You can breathe a little easier now.

Keep us posted as to how your small surgery goes. Good luck with that.

Hope you can have a good weekend.

Suzane

Posted 4/12/2013 11:28 AM (GMT -5)
At last you have some positive news David, I am so pleased for you and I'm sure that made your wife a happy person too. I know this doesn't take away the problems you do have but it must be a relief knowing there has been no spread.

I hope this upcoming op goes well. Does the results of the PET scan mean that the lump you are having removed is not cancerous? That would be a relief too. I will be waiting to see how the op goes and to hear from you afterwards.

Take care

Jane
Posted 4/12/2013 12:48 PM (GMT -5)
David, that's good news - glad to hear it. And I will keep you in my prayers and wish you all the best on your surgery on the 25th.
Posted 4/12/2013 2:45 PM (GMT -5)
snow, won't be going to the GFMPH meet in LA, thought about a last minute trip, but not going to be able to pull it off. Have pre-op next Thursday, and have to be in court next Friday.

thanks Suzanne

jane, the lump shows up on the scan, but can't tell from scan alone if its cancerous or not, can't wait to have it out of me regardless, one less thing to bother me.

also - thank you too
----------------------------------------------------------------------
UPDATE FRIDAY
Went to pick up my monthly Ostomy supplies, and happens to be at a compounding pharmacy. So I mentioned the B & O thing to him. He kind of laughed, and said he has only filled a single prescription for it in 10 years, and it was 10 years ago. He agreed with my oncologist and thought it was too dangerous to mix it with the Fentanyl alone. I did take the prescription back to my uro along with a note, but he was in surgery so I wasn't actually able to speak to him. Be interesting to see how he reacts to this development, and what he might suggest next. I give him credit for thinking outside of the box.

The compounding guy said he could mix a special batch, in conjunction with what my doctor feels would be a safe mix, but said it would cost over 500 dollars for a 3 day supply, which is nuts. Can't believe a little bit of opium would cost so much money. He said most insurances would not cover it, so he wasn't surprised that Medicare said no.

david
Posted 4/12/2013 3:06 PM (GMT -5)
That's too bad that you won't be able to make the trip to NO..

As I showed on the PC board...the 60mg B and O suppository is a mixture of opium which has 25 alkaloids including 10% of morphine which is the principle one. Another is .5% codeine.

Just so people can learn about this med....that small amount of morphine and codeine, in this suppository is about as strong as your Hydrocodone (Lortab)....So I just don't see why they keep saying this medication is "too strong or dangerous" with your Fentanyl when you take 60mg of Hydrocodone a day and even your Oncologist has said that he would up your BT med at any time when needed....

Many people on this board are on even more medication than yourself and do just fine....

I'm still just really surprised about the lack of use in your area....Maybe because I live just outside of DC in a large population, I've had two friends who have used these before and they are prescribed by Urologists quite a lot. Even my PM uses this medication for patients of his depending on the diagnosis.

That is why I was just hoping your Urologist would talk directly with your Oncologist as he (Urologist) is the one who knows about this med as well as he knew that you are already on the Fentanyl and Lortab yet prescribed the 60mg B and O suppository for you at 3 times a day right off the bat not worrying about it being "too much".

**Don't worry...promise this will be my last post on this:) Just very surprised at the "reaction" from your Onco as it really isn't a very strong medication and there were many ways to start with a low dosage and even take out the Lortab if needed.....

Hopefully your Dr. can call in a regular muscle relaxer to see if that would help as I don't think I've read about trying any of those?

Again, we all just want to see you in less pain as even upping the Fentanyl to the 100mcgh hasn't seemed to make much of a difference at all so thinking out of the box needs to be done.

Enjoy the weekend celebrating the great news!!

Post Edited (Snowbunny21) : 4/12/2013 2:43:22 PM (GMT-6)

Posted 4/12/2013 5:48 PM (GMT -5)
Snow, I now have the opinions of 3 pharmacists and my oncologist that all disagree with what you are saying. Not saying you are wrong, just telling you what they told me. The compounding pharmacist I talked to today, said the "O" portion of the B & O was as pure an opium as you can get. He also said that this drug was never approved by the FDA, but was "grandfathered" into use, because it existed before it was law. He said the FDA would rather ban it, but can't per say, so they kind of turn a blind eye to its existence.

Yes, SC is a small rural state, there's more people in the greater DC area than in the entire state of SC. You have to admit, for this pharmacist to say he only filled it one time in 10 years, and that was 10 years ago, shows me how little it is used or known. Kind of wondering where my Uro came up with the idea, as he knows first hand that I have been fighting bladder spasms for over 4 1/2 years and never mentioned this drug before.

Still appreciate your input on the subject. Due to the cost alone, it's not going to happen, what an outrageous drug price for something he wanted me to use 3 times a day.

david
Posted 4/12/2013 6:17 PM (GMT -5)
And just fyi I was more referring to the town in which you live compared to mine. The patients/people in this area have local access to places like NIH and Johns Hopkins that are known for their "out of the box" thinking and clinical studies. That is why it seems to be more used by Urologists or other Drs. in this area when other things haven't worked.

Wasn't trying to make a "slight" about the Drs. in your area or someone who lives in smaller towns.

Enjoy your weekend!
Posted 4/12/2013 7:17 PM (GMT -5)
David, apparently the cost of these thingies is a result of less companies manufacturing (due to the FDA non-approval). They are hard to come by and patients pay dearly when they can get them. And yes, Medicare does not cover them.

I found it interesting that these are used rather extensively in various medical settings ...for prostate biopsies, by oncologists for cancer pain management (rectal and bladder cancer), and for severe cases of colitis and other bowel issues. My guess is that doctors can get them easier than patients probably because they order directly from the manufacturer or through a distribution center.

It's a shame that you're not able to try them because from what I've read so far, they do work. But the combo of opium and belladonna is a powerful one indeed and I can't say I blame you for not wanting to add this to your existing meds (and get your pockets picked in the process!).
Posted 4/12/2013 8:00 PM (GMT -5)
snow - I didn't take it that way, just saying SC is a small mostly rural state. we have some great doctors and hospitals, but not to the likes of Hopkins and such. this is why my next step, will be to get a referral to see this Urological head doctor at Duke University, also one of the best in the nation. Hoping to have something going there before the end of this month.

sephie - even if the med was suddenly free, the fact alone that my oncologist doesn't want me to try it, is good enough for me. my wife was very uptight about me being on still another opiate based drug, on top of what I am already on. as long as my oncologist is my PM, I abide to his wishes to the letter, he has been pretty accommodating to my needs, which can be rare among doctors. at least he fully believes in the levels of pain which I suffer.
Posted 4/12/2013 11:55 PM (GMT -5)
David, I'm glad the scan came up clean. Am more than sorry about your bladder spasms and other ongoing issues.

I will be thinking of you on your surgery date. I truly hope that you get a bit of a break soon too, and can find that right surgeon.

Laura
Posted 4/13/2013 6:49 AM (GMT -5)
David, as stated in my post, I fully understand the concern you and your doctor have about adding this very strong medication to your arsenal. I was curious about this medication and found that while pharmacists may not see many requests for it, medical professionals do use it in some fairly common medical procedures and in the treatment of cancer pain.

Believe it or not, my research had one goal: to try to find an option for you in the event that you were interested in trying them. I'm not one to accept what the doctor says and like to research and question what I'm told. This is never meant to second-guess but simply to educate myself and possibly others along the way.

Pain management is a complex medical practice that requires flexibility and the ability to consider all options based on the needs and wishes of the patient. I was just hoping that the oncologist would have been open to discussing other options even if it meant changing your current meds to accommodate this new one. But, as you've said, the decision has been made by your doctor and you are in complete agreement with him, so this is all moot. Hopefully, one of the doctors will come up with another (and less expensive) option to help with the bladder spasms.
Posted 4/13/2013 9:04 AM (GMT -5)
thanks, laura.

sephie - the only "cure" for the spams will be a full or partial bladder removal. somewhere, there has to be a surgeon of the caliber to take on such a risky and complex procedure. I am willing to take the risk for the right doctor, because I can't know that I might have to live with this problem for the rest of my life. It's terrible, on top of and beyond all my regular chronic pain. Everytime I have one of those lasting ones, I wish I could just close my eyes and end it all, they hurt that bad.

just going to take some more patience on my end, until we can find the solution.

david
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