ADT and SRT Journey Part 5

Treat the techs well, Tee, and they will reciprocate. Once you get familiar with the process, it will be easy. Good luck!

I’m approaching the end of my 4th month on ADT. I’ve had a fairly easy time mostly, but over the last month I think it’s catching up with me.
Bellyfat, which I lost a few years ago, is back. Gained about 8 pounds, ALL in the belly.
I’m restless at night, don’t sleep as well. I’ve always slept like a baby when down in Florida where I am now
My bad knee and bad shoulder are way worse (yeah I fell on the shoulder twice, but it’s not getting better) I’ve got trigger finger which has gotten worse as well
My sense of balance is off for sure.
And my body hair is thinn9ng out, with some patchy bald spots.

I don’t really have fatigue, that’s the one bright spot. But it’s still hard to work out with bad joints. Last year down here at my Florida home, I was an animal in the gym. This year I’m feeling like all the other 68-78 year olds.
I know we tend to attribute everything to the Lupron. Maybe it’s not all from that. All I know is I don’t feel like a young 68 any more.
I pray that this 6 month regimen with SRT works, and I don’t have to go back on it in a year. and I admire and feel for all the guys who are on it long term.
No question here really, just a comment.

I get it Rob. And I’m trying to do that, focus on forward, what’s done is done.

I won’t feel neglected, and in fact we are cruising in March for 12 days, so it might be tough. But hopefully we will. Both have many years of enjoying Florida, and we’ll get together again soon

Lupron has an average time to castrate levels (<20, I believe) of 28 days. That’s average, some quicker, some longer.
So I’m guessing, just guessing mind you, that you may not be quite at castrate levels just yet. But still, that’s a pretty nice drop, so stay optimistic.

Prato.. Ken your description should be on the warning label of the Lupron shot! HA HA. I was thinking a month ago that things were getting better should have known just a little teaser! I have been trying to work on putting my airplane back together and getting the craph knocked out of me. Been living on ALLEVE the last couple of weeks to try and relieve some of the joint pain and get some sleep I have been just totally exhausted by time 7 comes at nite. Before PCA and 20 lbs around the belly I would have had a headlamp on and out snowshoeing at this time. Just when I want to feel sorry for myself I hear that one of the salesmen at the dealership where I hustle cars sometimes has a 3 yr old daughter that is on her 3rd heart operation and they have used up all of their insurance and are in debt 85,000 dollars already and climbing. The day she was born she went from Mama's belly right to surgery spent 47 days in the hospital. And now lives pretty much in a bubble at home because she has no immune system at this time to fight off colds, flu, etc. After hearing this wish I could win the lottery and give them the money to pay their bills for the little girl! Puts it all into perspective and humbles me and makes me realize how good I have it! Although as Rob Lee says the new Lupron normal makes it hard to realize this some days!

Larry

Well, got off to a blazing start and then...…….. Started SRT Wednesday of this week and when I walked in Friday morning was told the machine was broke and everyone would be rescheduled as soon as it is fixed......oh well, it is a machine I guess. Get my first Firmagon shot this coming Tuesday. My RO said he went with Firmagon because more patients seemed to tolerate it better than Lupron....have you heard that?

ROLL TIDE!!!!!!

You know I’m not sure about the number of machines but one would think more than one given this is a new hospital I’m going to. I’ll find out tho - I don’t like the idea of sitting on my thumbs here....

Teeitup, I had 2 Firmagon shots, both caused a bad reaction, the first at the injection site, and a general feeling of malaise with low grade fever, which lasted 2 or 3 days, the second just tenderness and inflammation at the injection site, that lasted about 5 days. After that I was switched to Lupron.

As SP said, they each have different mechanisms of action, and Lupron can cause a spike in testosterone at first, where Firmagon does not. A big difference though is that Lupron drives down testosterone to castrate levels on average , in 28 days after the shot. Firmagon does so in 3 days. Once you have Firmagon and T is down to nothing, if you have not to,rated the shot well you can switch to Lupron without worrying about the initial spike. That’s what happened to me.

Good luck with your treatment.

Well, on my way in a few mins for SRT No. 6. Yesterday, got two Firmagon shots in the gut....not too bad but this morning have two welts about the size of golf balls on either side of my belly button and a little sore. Have to get a bone scan today to set baseline I'm assuming. The NP gave me a book written my Dr. Wassersug et. al. entitled "Androgen Deprivation Therapy". In looking thru it, I noted that when talking about Firmagon vs Lupron, they indicated tests had shown Firmagon did not increase chances of cardial problems OR bone deterioration. I'm wondering if anyone here chose to stay on Firmagon the entire time therapy lasted rather than switching to Lupron (which, from my understanding, carries with it possible cardiac and bone problems)?

Just a quick refresh Hoping that everyone is off to a great start to 2019! I'm going to get an MRI on my back in a week as the pain in getting worse my local doctor has been in contact with my team at the mayo and because of an undetectable psa and my degenerative disc disease feel that this pain has nothing to do with my cancer. At times it is hard to walk as the pain now has completely gone down my right leg all the way to my toes add this to the joint pain in my hands from Lupron and it makes some days not very nice. My heart really goes out to the guys whose PCA has metastasized and the pain that they must encounter. So yeppers SRT and ADT may not be the most pleasant experience but if it keeps that fricken cancer at bay I guess no I know we have to be thankful. In reference to Rob Lee's no subject post I have no excuse on my second cup of coffee. ooops must be the Lupron!! LOL everyone have a great day!! Larry

Bump

Forecaddie... good to hear from you! I sure hope it will be your last one too I know I am looking forward to hopefully my last in April. I put up a new topic on longevity of ADT don't know if you had a chance to read it, it hasn't gotten much interest yet but it talks about the better results with long ADT they were using I think 28 months was the length. The guys that escape the SE's of ADT are pretty fortunate, and then there are other guys that get hammered and that's when we want to use the Lupron Defense!! LOL Just had a guy that I was at the hope lodge with pass away so makes me glad the lupron is working so far. Just to update to my last post had my MRI shows more narrowing of my spinal canal and more degeneration of my disc's so now have to look into all my options if any one has any experience in this condition would sure appreciate any suggestions. Have a good day everyone and stay warm was -31 degrees this morning woke me up when I took the dog for a walk this morning!!

Larry

Forecaddie said...

Here's my latest Triple Play update. My last post was on 3/25/18. Since then I completed SRT in June 2018. I use the washroom so often I don't bother to zip up my pants (at home). This week was my 4th Lupron shot (4 month version). My Urologist says it should be my last (if my Testosterone stays <50). He wants me to continue Lupron until 1 year after SRT ended.

My PSA is undetectable. But my mood swings are not. If I can't chill out I may have to use the "Lupron Defense" someday. Counting the days ...

Great PSA news! What is the Lupron Defense???

My experience, opinion, and research, in part based on talking to a lot of friends, is that Lupron is most definitely the gift that keeps giving...for years, not months. RO's, Uros and even MO's know precious little about what causes SE's, or how to most successfully treat them. As you, I, and many others have discovered, SE's continue well after the last Lupron shot.

I would press the Uro hard for specific 'facts' if he pushes for more ADT. Given your numbers, 16 months seems like enough. IMHO, those who blithely go with whatever their Uro or PO suggest re extended ADT treatment, without lots of independent research are doing themselves a disservice.

Best of luck for continuing that <PSA.