I traveled out of town to a Proton treatment Center of Excellence, and it was determined that I would start ADT upon returning home. So I got back home, contacted the RO who had originally seen me and suggested the Proton treatment, then set up an appointment to go into the RO and have ADT injections done there.
I went to the local RO - about a 35-40 minute drive on good days - discussed coordinated ADT treatment with the far away Center of Excellence, and was told fine, call the office the next day to schedule an appointment for injection of Lupron, come back the day after or the day after that. Start the process right away.
Been calling the RO for two days now, no replies, no callbacks.
I'm wondering if my local Urologist - a 5 minute drive from my house, and the one who did my original PCa workup, biopsy, and referral to the 35-40 min RO - can give me Lupron injections. Could that be coordinated with the Center of Excellence? It would make things a lot easier, because if I don't get a call back for an appointment or need some other work done I can just swing by the Urologist's office and chat with the front desk. Or, does this Lupron injection have to be given by the RO who is a 35-40 minute drive from my house?
For some reason I seem to have slipped through the cracks and I don't know how to connect the CoE with my local Urologist, if that is possible. Oro can my Primary give me the Lupron injections? She's always available.
My urologist gave me my first Lupron injection. Well, his nurse actually gave it. He then referred me to my MO and he took care of it from then on. I wouldn’t have expected my RO to do it.
My RO has never had anything to do with my Lupron but I suspect that could be different elsewhere. My MO handles most of my work ups these days. I haven't seen my urologist since dx and saw my GP once for Cologuard since dx. I suspect I am the oddball with this but my MO orders anything I ask for as far as tests so haven't seen a need for the other Drs yet. I will probably see my GP soon for additional screening.
I'm in UK. Degarelix is provided every 28 days via pharmacy. I do my own injections. If you do this, read as much as you can about technique. It is not like most subcut and the instructions miss out some points which make a difference. The key points are getting the angle (& therefore depth) correct (it needs to be nearer 90 degrees at start); very slow injection; keeping the needle in position for one minute after completing the injection; very slow withdrawal. My first two were by the district nurse and caused large bruises and hard lumps which are still palpable. DIY means you're not rushed and can follow the method, resulting in minor bruising for a day or so. You can also choose your own position. I find standing up works well. HTH.
Coincidentally I have been recently researching how to get my monthly Firmagon/Degarelix injection because I don't like going to the hospital (it's a lot of rigmarole for 5 minutes of real work). I now have access to a nurse. I was thinking of whether or not I could learn how to do it myself - and there are reports of course of people doing that. I kind of chickened out though. I'm in Canada.
I asked my Dr recently about how many of his patients self inject. His reply was that it’s reasonably common. Give it a shot but of course get regular blood tests to ensure you’re doing it correctly.
I'm high-volume Stage IV metastatic inc. to spine. Regular-ish tests. ADT "forever". An ARPI daily (Abi) "forever". Had chemo. Cranking up exercise! Life is still normal-ish! No disabilities so far! Super-thanks for sharing your doctor's comment that self-injection is "fairly common"! Who knows if this might become useful knowledge to me in the future?
It looks it depends on country and its regulations. In Slovenia we have to go to urologist for Eligard injection. It would be much more convenient to go to GP, but this option was never given to us. Let alone that you would administer it yourself.
My monthly Lupron shot goes in my butt so not sure how I would ever be able to do that on my own. I generally go with the shot to my GP who administers it. But if the timing is bad due to Holidays, us being on vacation, etc., my wife administers the shot. I’m in Italy so as mentioned, maybe different rules.
Just FYI - I'm on Firmagon/Degarelix now 18 months. High volume metastatic PCa with bone mets to the spine. And 0 PSA now almost 10 months.
I thought to reply because of my decision to stay on F/D. I was offered to switch to 90 day Eligard/Lupron - "for convenience". I did a LOT our research. And decided the decision based on convenience was very poor reasoning for such a major decision. The two ADT medical technologies are very different ("antagonist* vs "agonist"). And there are lots of reasons to prefer one over the other especially related to questions of cardiovascular disease, but not just limited to that.
Yes. You'll have to let them establish a chart, do regular blood tests, and so on. Make sure all your doctors are communicating.
My primary oncologist is at MD Anderson in Houston, 3 hours away. I have a local oncologist 10 minutes away who does Lupron injections. I'm not driving 6 hours round trip to get a shot in my ass.
Yes, I am trying. I've notified my PCP, Urologist, RO (who will now no longer be my RO) and the Center of Excellence, given them each permission to contact one another, get records, etc etc. But still, things are not getting from A to B to C. I now take a 2" binder full of my paperwork w/me to all appointments, 'cuz I'm discovering everyone is missing records and reports from the others. Seems every day I'm either on the phone or waiting for a callback for several hours. Very frustrating.
I found out early on that signing those data sharing agreements is useless, unfortunately. If your doctors all have a portal you can send them the info which is what I do every 3 months. It's worth the effort though to get your medication when and where you want.
You can get a damn monkey to do it..... if the Zoo's open.... Tell the closest medical person to do it....... they get paid to................WHAT A COUNTRY WE'VE BECOME???...
John, the reason I ask is that nobody is giving me any info about who to see and/or where to go next. If I don't ask, nothing gets done. Just a few years ago, when I was in a PPO, everything was coordinated between different offices. Tests were scheduled right then and there, with follow-ups to each appropriate specialist made at that time, too. Not sure if it's because I am on original Medicare now, or if it's a trend to give patients the authority and responsibility to coordinate each and every step along the way. Whatever it is, things have changed and I seem to be the last to know.
It's our "after me your next attitude" of the people. You must learn how to speak to these morons. Call each doctor and keep a record of Who, Where and When and go down the line calling them (if all of them) one by one. Insist on getting names of people who answer phones (most only give first names cause they hide). When making a critical call as a Manager in a large financial company I would stand up at my desk and that gave me the "inside my body" authority (BIG DEAL) to break chops..... Just push them to what you want since you're the paYtient and they are the medical staff. Too bad I can't make these calls for you this type of crap is right up my alley. Hit em Hard.....
We are original Medicare and our secondary is a PPO. Most everything that needed to be done was at the main clinic, but recently needed to be done at a sister facility several hundred miles away. It was coordinated by the scheduling person. If doc wants you to have something don’t leave until you talk with the front desk or whatever so you know what’s going on. If that is your main doc, they should have, most likely, should have either given the first shot then, or scheduled your first one. Our doc walks us up to the scheduling area, hands them the chart and they review the orders. But in answer to who can give it, trained medical personnel, ie RN, LPN, trained med tec. Docs don’t usually.
I dont know if its the same but my ADT injections (Zoladex) are designed for the tummy fat - I administer them myself (every 3 months) and that saves a bunch of bother
My MO gives my lupron injection. It is interesting however that it can vary with the system you are in. Some systems ADT is always given by Urology, some by Medical Oncology, and some by primary care. Since the code it as "administration of chemotherapy" the price for administration is outrageous on top of the already high cost of the drug. I once suggested my insurer that I be allowed to inject my self since quite frankly any one could be trained to do it in 10 minutes. I pointed out the saving in healthcare dollars but they said only if I was in a remote setting.
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question for those who have stopped Lupron after many years of ADT
