Latest update, progress at last

My 10 AM, my doctor's nurse had contacted me.

Several things had happened that led to all the communication failure last week.

She was on vacation all of last week.  The doctor began a 2-week vacation last week out of the country.

When they made the recent switch from private practice to the Gibbs Cancer Center, they all got new e-mail addresses, and the old ones did not transfer e-mails to the new ones.  She just happened to look on purpose at her old account, and saw my e-mails.

She gave me a new emergency number, that I can use for any true emergency in the future, it will put me through to who ever is the oncologist on call at the time.  I put this number in a very conspicuous place for future use.

She is contacting my doctor (today, Monday) and promised I will have an appointment with one of the two neurologist that we talked about by Wednesday.  She is suppose to call me tomorrow with an update.

Also, she went ahead and talk care of my next Fentanyl prescription so that it didn't become a problem with the doctor being out of pocket.  She just has to get one of the other oncologists to sign off on it.

She said in the future, to avoid confusion, not to e-mail, but to call first.  I did remind her that the doctor told me specifically to e-mail him following the Dr. "S" visit of recent date, so I was doing what I thought he wanted.  How could I know that he was going on vacation for two weeks?

It's all good, while I was in a lot of extra pain during that terrible 9-10 day period, it was still not a true "emergency" in the truest sense of the word.  It was just an escalation in my chronic pain world.  If I had thought I was in a dangerous situation, like something serious was going wrong inside, I would have been in our ER 2 minutes from the house in a heartbeat.

Hopefully, next time, there won't be so much confusion and mixed signals going on if I have another event.  I am glad this major move is behind them now.  As they say, "it" happens.  I am just happy that it seems to be resolved and shouldn't happen again.  Prior to two months ago, none of these kinds of things ever happened.  My doctor had always been easy to reach, great about calling me on his own, and always answered e-mails quickly, so I knew something out of the ordinary was up.

david

 

Post Edited (Purgatory) : 6/24/2013 8:53:04 PM (GMT-6)

So glad that everything worked out.

I have a few drs that I text and email with. It makes it so much easier since it's direct contact without the "middle man" to deal with.

Let us know how the neuro appointment goes. I hate meeting new drs and having to explain the past 10yrs. I hope it goes well for you.

Any news on the Duke referral?

So glad to hear you got this sorted out! It is so comforting to have those numbers when you need them!

Thanks for asking about me.
Well the news was good in a way, the macular degeneration got a little better, but that still points to that the methotrexate might have caused it, he did allow me to go back on the methotrexate, However, I'm adding vitamins for eye health "Right for the macula" and omega3 to hopefully keep the macular degeneration for getting outta control, it's still there just improved some and I took my methotrexate yesterday and can tell some of my knee swelling is down. Next set of eye pictures will be in October, and if he pulls me from methotrexate again then I'm never going to restart it ever as this start and stopping is for the birds. It just seems like a never ending battle with being on the med, to being off the med...and I had to send an appeal into my insurance over the methotrexate as they are overstepping on their end, not wanting me to take the methotrexate(MTX) injectible and wanting me to take the pills which is impossible for me as I have a history of bleeding Ulcers and not the h.plorei ones...So as you can tell I'm fed up over this insurance game again.
Sorry for the rambling on your thread.
Great new for you and hope you get better news from your neuro appointment...
I'm still in limbo and awaiting calls...
Many well wishes and Prayers, again sorry for the ramble...

Finally got my neuro appointment for 17 July...still awaiting my pt calls/appointments...but one thing down.
Many well wishes for you David...

Hi David Your leg sounds like CRPS. I have read about Laura's CRPS, and that's one thing that she talks about. I sure hope that yoiu get that appointment really soon.

Take care.

love and hugs
Loretta

ps your welcome

David

Thanks for updates.. your faith in your dr is well-placed.

So sorry about the additional / new pain. Your acceptance is a reminder that worry is a needless additional stress.. hope you know what I mean.. the brain is tired & confused.

The heat gets me too. Another issue the family does not acknowledge -
"fresh air is good for you, blah blah".. a little over 3 hr sleep last night (because I did get some (hot) fresh air & it eludes me so far tonite too.

Prayers & blessings

Wow David You certainly have had your share of that burning feeling. I hope you can get the diagnosis with the next neurologist, so that you can get the best treatment possible. Take care my friend. I hope that the bad pain caused from the heat has subsided some.

love and hugs
Loretta

David,

In reading your thread here and over on the PC forum.... to hear you describe how much agony you are in.... I just don't understand why your doctor isn't putting you on the meds that we've talked about endless times?

I'm sorry if I sound frustrated, but I admittedly feel that way - when I see anyone suffering - and there's a possible solution that seems pretty straightforward? I completely understand that nothing is going to take away all the pain.... and being pain-free isn't a realistic goal of those w/ long-term CP issues. But there's a difference between dealing w/ (normal) pain and what you describe - your own words: "I swear there is an IV in me on that side injecting some hot liquid that goes through all my nerves and inside my bones".

That's just pure agony David!

You speak of having a ton of patience... and, while I think that can serve a great purpose in many aspects of life... I personally don't think this is one of those times. It doesn't mean that you have to be aggressive or mean-spirited - but there's NOTHING wrong for a person to say - "I'm in agony; I'm suffering; I need to try other things to improve this situation". Not weeks or months from now, when I *might* have a diagnosis, but NOW. Today.

There's been numerous people on both forums that have shared that the CRPS diagnosis is one of mostly exclusion and can take time to properly diagnose. While I hope not - it may take many, many months. Are you going to just maintain the status quo for these months?? I hope your answer is NO.

Hypothetically, let's say your diagnosis is CRPS.... yes, there are some certain treatments (such at the ketamine infusions, etc) that are specific to this diagnosis. However - most treatments are the same for generalized chronic pain. Narcotics. Nerve medications. Steroids. Antidepressants. Nerve blocks/facet injections/etc. There's biofeedback, relaxation techniques, etc. There's intrathecal antispasticity meds (baclofen) and/or narcotics (ie, the pain pump).

The bottom-line is this: regardless of the "official" diagnosis (which, yes, I do think is important to eventually get).... you are suffering! Why wait on beginning some of these treatments?? Especially since some of them are "easy" and might really help you?? When they would be the same treatments whether you have "x", "y" or "z"??

You've mentioned before, a few times in fact, that the only thing that you could see helping your pain was being hospitalized on IV meds. But, as I've shared numerous times - there are things that give the same relief as IV meds (not going to even mention it, because I've done that so many times!)....

So, I get that you are a patient person, David... not a worrier... all of that. But I see a person who says they are suffering and in misery..... and I'm just not understanding why you wouldn't want to try anything/everything to get some relief?

I try to always look for the "positives" even of a bad situation. Certainly, I wish you did not have PCa. But, since that IS one of your health issues.... it makes it easier for your doctor to script you certain medications to deal w/ your pain. I know your oncologist feels that what you have is "more" than cancer-related pain.... but, until a diagnosis is reached - he can still try you on various other medications. And, if he is unwilling to do this (which would be a huge red flag to me).... then I would be finding a traditional pain management doctor that will. But - like I said - with your PCa diagnosis - it makes it easier for your doctors to justify using some of the more expensive medications.... that others on here have a difficult time getting.

We've all said - at one point or another - that we are a family of sorts. As we all know - being a family doesn't mean we have to agree..... You are ultimately the one in charge of your health/pain issues. But I wouldn't be true to the person I am.... if I didn't share the thoughts that I just did.

--Tina

tina,

don't know where to start, or if I should even start at all. appreciate what you wrote and why you wrote it, really do.

for starters, I will cease to post anymore descriptive pain accounts here. I can't help that they are very detailed and very descriptive. that is the writer in me. what I write is literally how I am feeling at that moment in time, very literal, very detailed, and never enhanced. not being written to "impress" the crowd, nor looking for sympathy. I don't want anyone's sympathy, I don't feel sorry for me, this is just what life has handed me, nothing more - nothing less.

but these descriptive writings upset people too much, and I guess I didn't realize that in my weird way of thinking. I am sorry. I thought I was simply sharing my experience, guess it was t.m.i.

let's look at some options:

can't go to the ER - they would see nothing wrong, but a person already on heavy meds seeking more meds without going through their doctor.  our local ER's are full of drug seekers, and the ER's have heard every excuse.  Plus I am not looking for more drugs.  I am looking for a better dx, that will lead to better treatment.

steroid based injections - no way, very allergic to any steroid based meds, plus pain so wide spread, just where would they choose to inject?  this is what one doctor already told me about injections.

my oncologist can prescribe pain meds with more liberty than say a PCP, but even he said he has his limits, he has to be careful, he doesn't want to get nailed by the system, he doesn't want to lose his ability to prescribe meds.  so he has to make sure there is a proper dx to justify certain meds and higher doses.  that makes perfect sense to me.  in my cancer situation, I can not afford to close such a skilled oncologist, as my cancer continues to progress.

He said that of all his PC patients he currently sees, I am having the most severe trouble with pain, and I don't even have bone mets yet.  Can you imagine what it will be like when I finally cross  the line over to mets?  And its going to happen, or we are doing right now is buying me some time, because my QOL already sucks so much.

And whose fault are all these delays and setbacks?  Easy for someone to blame my doctor.  I am just one of many many patients, I don't expect him to devote his every waking moment to David Riley.  Not realistic.

It took time to set up that appt. at MUSC in Charleston.  Then I had to arrange the trip, then we went, then I saw him, and that was a waste of time.

Same thing with this Dr. "S" here in Greenville, the alledge CRPS expert that ended up being, let's say, some kind of nut case in disguse.  My doctor's fault?  No, I asked to see this doctor, based on his advertisement and web page.

And since found out, not all neurologist have CRPS expertise, many don't.  So all these things take time, why is that hard to understand.

Same as me trying to see this specialist at Duke.  Not an easy thing to set-up, then I have to consider my wife's work schedule, the long trip itself (not sure I can be in a car for 5 or 6 hours).

That's why it takes some patience and understanding.

So for now, not going to share any more descriptive pain episodes.  They will still happen of course, but I will keep it to myself, as it obviously is serving no useful purpose here at HW CP.

I will, however, keep posting medical updates when I get them, med changes, etc.  and of course, I am dedicated to staying here and helping as many people as I can, for as long as I can.

Thanks for sharing your thoughts on the matter.

david

 p.s.  if you referring to a certain pain "med" that is in leaf form that we can't talk about, I wouldn't do it even

if it were legal in SC, and it was free of charge, and if it worked 100%.  I have personal reasons and moral reasons from my distant past that I really can't share here that would prevent me from doing so.  I have no problems if others are ok with it, not being judgmental to anyone else.

 

Post Edited (Purgatory) : 6/28/2013 8:52:52 AM (GMT-6)

**Just FYI but you went back and edited your last post while I was writing and you only had the first two paragraphs when it first was on here and that is what I responded to in my above post....

Just adding to the other things you wrote after the edit...

I still just haven't seen things take as long as they have for other people with terminal cancer or even just in general. It's one thing if the Drs. you were going to see had the appt. a few months out but it is taking way too long (in my opinion) for an appt. to even be made...

My mom has Medicare, as well as I know a lot of folks on here do and my mom makes all her own appts. and then the nurse will send over the referral....Same thing with if the Dr. needs to speak with the Dr. beforehand...

Like with Dr. M at Duke...your Dr. gave you this name back at the end of March and there still isn't an appt. yet..It could have been made back then and then your Dr. could take a few weeks IF that was needed to get to the phone consult.

So, not trying to diss your Dr. just saying it's confusing the way that your Drs. office handles things with you having to wait for them to make all the appts. and it has taken weeks/months.

And hopefully you kept that list we gave you on the PC board as most every Neurologist name we gave you treats CRPS as we made sure to check that out so that is good that you have plenty of choices within Greenville as well as the other cities within an easy drive.

I think what has me confused is that you had said in the past that your Onco was also a Board Certified PM so that is why I thought he could prescribe anything he needs to for his patients..You had always told us that he would do whatever it takes to make you comfortable....If he has limits for some reason, then that is why we are saying he should be sending you to a PM that can work together with him and get you the pain meds you need.

I can't imagine why he would get "nailed" for anything....there isn't any more person in need of being comfortable and not in great pain than a person like yourself with terminal cancer and all these horrible side effects from the radiation.

You still have plenty of room to move with pain meds in the future as you are actually on a fairly low dosage with just the Fentanyl patch and Lortab...So, to us, there seems to be no need to suffer now just because you may need more pain meds later? I guess that is your choice...but when you have been writing each week about how awful the pain is.....we try to help by letting you know about all the other pain meds you could be using.

And it's not about "drugging" someone up to where you can't do anything...there are meds you can just use when you need them and they are very powerful and effective.

Anyway....we are all just trying to help...no one is saying you have to stop writing anything so not sure why you are saying you are going to stop. This is what we do here....we try to offer any suggestions we can.

I really hope your appts. are set soon!

Sephie...thanks so much for articulating those thoughts!!

And to David...not sure in your P.S. in the last post who you were referencing asking about a "certain pain med" but neither Tina nor I was talking about that...

We are saying there is Fentora, Fentanyl lollipops/suckers, as well as many other strong BT meds, along with even raising the Fentanyl patch if needed..

And then a lot of other non-narcotic meds and treatments that you can try in combination with each other. We just see that there are lots of options to help with your pain levels.

Post Edited (Snowbunny21) : 6/28/2013 9:33:40 AM (GMT-6)