Subcutaneous Lupron question - Advanced Prostate...

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Subcutaneous Lupron question

COG1 profile image
COG1
23 Replies

My husband is participating in a clinical trial at Emory (Winship Cancer). As part of the protocol, he gets subcutaneous Lupron injections (3month), alternating sides each time. After every injection there is a lump in his stomach at the injection site. Usually, this goes down within a few weeks. He just received his latest injection 2 weeks ago, however the 'lump' from the previous injection still hasn't receded. He, of course, didn't mention anything about it at his appointment. He's now concerned that it's problem. I just called a left a message with his doc, but they are usually slow to respond unless it's an emergency.

Does anyone else get Sub-q Lupron? Have you had issues with the 'lump' hanging around for this length of time?

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COG1 profile image
COG1
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23 Replies
Break60 profile image
Break60

I don’t understand why anyone would need subcutaneous shots. The shots in the “arse” work just fine with no pain or lumps. What’s the point of the trial?

COG1 profile image
COG1 in reply toBreak60

The study is to determine if earlier use of Enzalutamide is beneficial (EMBARK). The study protocol requires the sub-q injection. He would much rather get the intramuscular shot.

Break60 profile image
Break60 in reply toCOG1

Ok I didn’t know that Enzi requires the LHRH agonist to be administered subcutaneously. Or if it’s just for this trial I’d drop out. I get xgeva that way in the arm with no side effects.

COG1 profile image
COG1 in reply toBreak60

I think it's just a trial protocol. I don't think it would be worth dropping out because of an unpleasant injection every 3 months. I was just wanting to know if anyone else had experienced the 'lingering lump'.

Break60 profile image
Break60 in reply toCOG1

That’s your call. I thought you were worried. What’s the trial number?

COG1 profile image
COG1 in reply toBreak60

NCT02319837. Just asking for others' experiences/exchange of information....it's a little pre-mature to jump ship at this point.

DeanNelson profile image
DeanNelson in reply toCOG1

Yes I had degarlix ONE time in the stomach 7 months ago and the lumps are still they and hurt like hell if they get hit

Essex488 profile image
Essex488 in reply toDeanNelson

Yes, I too had a painful lump from Degarelix-the pain on touch [just where the band from my underwear sits] lasted for almost a year. I've never had a problem with Eliguard or Lupron in the ass.

Tall_Allen profile image
Tall_Allen

I think it's good that you told the doctor. If the Lupron isn't getting absorbed over 3 months, he will want to know and test his testosterone levels. I think it's an important clinical trial. The protocol says " leuprolide administered as as a single intramuscular or subcutaneous injection once every 12 weeks" so it sounds like they can give it IM.

Break60 profile image
Break60 in reply toTall_Allen

Doesn’t intramuscular mean in the upper buttocks as is the usual practice?

Tall_Allen profile image
Tall_Allen in reply toBreak60

intramuscular is often in the upper buttocks but doesn't have to be.

Break60 profile image
Break60 in reply toTall_Allen

Ok but my point is if COG1 has the option in the CT to have the shot via intramuscular without side effects why put up with the problem he’s having with subcutaneous injections?

COG1 profile image
COG1 in reply toTall_Allen

We were told that they had to do it sub-q. I'll certainly question if it can be given IM. I know he'd much prefer that. We do know that his T levels were at castrate level on his last blood work 2 weeks ago.

My husband gets the 3 monthly shots in his stomach. He sometimes has a tender lump and some redness at the injection site . The nurse is really good at the injections and the lump does eventually go away . It doesn’t happen every time and when we questioned it were told it’s normal with this injection.

when i first took the lupron shot it was subcutaneous and i loved it then after a couple of them i came back and they said they no do im shots with big needle. i couldn't get them to do the sub stated more went into ones body now then before. also the lupron has to downers. one it decr3easses one bone mass in one body so after time its not helping u. it removes ones testosterone that's all. zytiga actually works on ones psa if that is your main goal of following ones numbers. all meds that u take over time will stop working and u must move on and try something else. when my testosterone was down to 3 i told my oncologist to stop treatments for awhile my body needed rest. he didn't like it but it was my body not his and he refused to do a test to see where my testosterone was. males have from 200-900 testosterone and mine was 3. i felt there was no need to run the total course of removing my psa numbers and the drug didn't have any effect anymore. again remember its your body read all u can and u make the decisions on how to handle your treatment.

Dave435 profile image
Dave435

I receive a subcutaneous injection of Lupron (Eligard) every 6 months. I can usually feel the lump of the previous injection when my next injection is due. I don't think it's a problem. This protocol has worked well for me for the past 7 years. Good luck with the trial.

Dave

Litlerny profile image
Litlerny

I’ve had it like that, and it took several weeks for my bump to go down. The bump was in an uncomfortable spot where it often rubbed against my belt and waist band of my pants, further irritating the skin. So, I had them start sticking me in butt muscle...MUCH more tolerable.

elainea53 profile image
elainea53

My husband had these at the beginning of his treatment. At that time also going to Winship, they didn’t say it was a trial. His stomach would have a lump and be red for weeks. Some were more pain ful than others. It seemed to also depend on the person giving the injection. Now he gets eligard in the arm. Good luck at hearing back from the team at Winship

DrWrite profile image
DrWrite

I'm with Dave on this. I get Eligard in the stomach every 6 months. And yes, there's a lump that goes away after a few weeks, give or take. Otherwise, it's all good. And I don't have to shave anymore. [JUST KIDDING!]

Mkeman profile image
Mkeman

I get Eligard in subcutaneous injection every three months with little to no discomfort. The nurse ices the area first. The fatty area in the abdomen works well for slow

absorption. The little bump eventually goes away.

As this is trial, all bets are off. Perhaps it’s to test a differing of opinions of Medical Oncologists In the suppression of testosterone. My experience is based on twenty-three injections of 3 month, 22.5 mg Lupron or Eligard. All injections were in the Dorsogluteal muscle. All were given Intramuscular. Oh yes, they can be given Subcutaneous, however, in the opinion of my Research Medical Oncologist, Intramuscular administration is preferred for quicker responses by the body. I am not going to argue as my T was always less than 5; usually in the 2-3 range.

I actually preferred Eligard as there was a quick 10 second sting versus a sore spot for about 6-12 hours. Only one time did I have a lump; when an inexperienced RN delivered an injection Subcutaneous. The point here is that the “Z” method is used.

This is accomplished by pulling the skin adjacent to the injection site downward and laterally to displace the skin tissue by about 1 inch. This will shift tissue layers above the muscle to the side on a slant or like a “Z”. Pierce the skin at a 90-degree angle. After injecting, slowly release the skin back to its original position, while withdrawing the needle with a smooth motion. This action actually seals the Lupron into the muscle for quicker absorption, better distribution, and reduced leakage into other tissue layers.

I asked asked about rubbing the site to relieve any lingering pain. I was told never to massage because this would cause the medication to enter the subcutaneous tissue reducing effectiveness.

After readings all the responses, I see that different doctors deliver Lupron and Eligard in different manners. I am relating just my experiences that for me had very little discomfort.

Gourd Dancer

sbmurray profile image
sbmurray

I receive my Lupron every 3 months. It's IM in my butt. For weeks after the injection, I have pain at the site. Would love to get sub cutaneous but it's a pre-filled syringe with an IM needle already there. According to what I've read this pre-filled syringe is specifically for prostate cancer. I could definitely be wrong. I'd much prefer sub-q. If anybody has the answer I'm interested. Thanks.

Jimhoy profile image
Jimhoy

I wonder what you heard back from your Dr.?

I’m sure its the same as I have heard from my all that I’ve questioned about this, answer being bla bla bla bla bla!!!!

My summary is that if you put an asprin in your mouth, and it has not disolved completely, is it still delivering medication? Yes, it is!!

I have been on Eligard for 18mo’s @ 3month intervals. I watch them vigorously mix the leuprolide (aka Lupron, Eligard.....) with the delivery agent before loading into the syringe and injected.

I’ve seen charts that track the testosterone level verses the leuprolide level. They show the “T” remaining a constant low while they track a spike in leuprolide levels at each injection time (my case, every 3 mo’s). Actually, a slight increace in “T” at the injection time!!! Page 5 of below.

accessdata.fda.gov/drugsatf...

Soooo. Even if the dosages overlap, I don’t believe they are more effective in achieving chemical casteration / ADT.

Now my issue, why have I been looking into this for months? Here’s why!

My last (final) 3mo dose of Eligard was administered on Nov 17,2018. I’m going on quality of life vacation once this dose does it’s 3mo thing and weans out of my body?? For the record, Eligard kicked my A$$ six ways to Sunday!!!

Anyway, I received this injection at a diferent facility than my others. They deposited it as described above however, inadvertantly on the same side of my stomach as the previous depot!! Does that matter?? I don’t think so but it did call my attention to the fact that the previous depot was still there!! Virtually the SAME SIZE AS THE NEW.

Since then, I know for a fact that my SE’s have clearly intensified in the past months. My execitive / cognitive ability has declined further to include dificulity comprehending what is said to me (I can hear, just doesn’t make sence) and have recently succomb to being medicated for anxiety!! Etc etc etc!

So, in the diminished mental state that I have been in for the past 18mo’s or so, It took my reading your post to put 2 and 2 together. Thank you!!!

I’m struggling to make my point, please bear with me!!!!

I will use this knowledge (if I remember it in 5 min’s) should I need to restart ADT after my QoL vacation.

My first realization that something was wrong was reported to my Dr on Nov, 27th 2017! Very very confused, unorginized, argumentive, and on and on!!!

Going forward, (two points).

Point #one; I believe that Dr.’s should include a simple blood test to determine the levels of leuprolide and “T” prior to subsequent injections to determine if they are necessary at that time. Especially for those that require ADT long term.

Which brings up point #two (just by talking it through)!!

The standard of PCa ADT initial treatment is currently 18mo’s. It’s clear that many don’t need a shot every 1, 3 or 4 mo’s to keep our “T” depleted!!! Eligard once finally deposited, a 3mo dosage is @ $4000.00 each? More?

I skipped a month 2/3’s of the way through my treatment when changing my Dr and continplating suspending my treatment. My “T” did not raise from its constant15 and PSA stayed @ <0.1.

Maybe most only need a 3mo dosage ever 4 to 5 months saving $$$$$$$$$$$$$$$ especially for thoses with co-pays or worse, no coverage!!!

Maybe, people that loose their jobs, are unemployable and suffering every day of their lives (yup....me) don’t need anywhere near the amount of drugs to acomplish the goal of ADT, OTHER THAT IT COMES IN 1,3,4&6 MONTH DOSAGES, SO YOU HAVE TO HAVE IT EVERY 1,3,4&6 MONTHS RESPECTIVLY!!!!

Jc

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