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Posted 9/15/2011 1:07 PM (GMT 0)
Okay, I've been on Lupron now for 11 months. My next psa/Lupron shot is in a couple of weeks. Recently, I have began experiencing a lot of finger joint stiffnes and pain along with trigger finger on 3 different fingers; 2 on right hand, and 1 on left hand.

I was wondering if anyone else on HT has experienced this?

Thanks

K
Posted 9/15/2011 3:00 PM (GMT 0)
I am at the same point on Eligard and will get another shot in three weeks. I have some joint pain in my fingers, but I think it is arthritis that predates the PCa treatment.
Posted 9/15/2011 5:14 PM (GMT 0)
I did on my left hand where i jammed three fingers the previous year. Quite scary but much better now that the T is back.
Posted 9/15/2011 6:30 PM (GMT 0)
I'm into my fifth month and no joint pains that I aware of at our ages......hoe long are you guys planning on staying on the HT?
Posted 9/15/2011 6:58 PM (GMT 0)
Looking at http://www.medicinenet.com/leuprolide-injection/page2.htm

SIDE EFFECTS: Mild burning/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, trouble sleeping, reduced sexual interest.

I've just started with Zoladex which is the same as Lupron. Had my first injection on 4 August, I experienced no side effects till about 2 weeks ago and than had the pleasure of hot flashes.

I plan to stay on the HT as long as my Medical Team says.


For the joint pain, does excercise help at all?

I'm very interested in the responses you receive as I'm just starting on this wonderful journey.

Bud
Posted 9/15/2011 7:05 PM (GMT 0)

Raddad said...
Looking at http://www.medicinenet.com/leuprolide-injection/page2.htm

SIDE EFFECTS: Mild burning/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, trouble sleeping, reduced sexual interest.

I've just started with Zoladex which is the same as Lupron. Had my first injection on 4 August, I experienced no side effects till about 2 weeks ago and than had the pleasure of hot flashes.

I plan to stay on the HT as long as my Medical Team says.


For the joint pain, does excercise help at all?

I'm very interested in the responses you receive as I'm just starting on this wonderful journey.

Bud

 

How long did your medical team indicate? The reason I ask is that some ONCs and UROs have different opinions on the length of time to stay on HT and how effective it is beyond 12 months.

Posted 9/15/2011 7:23 PM (GMT 0)
GlennKavanagh

I also heard of various 'standards of care'.

I'm under care at the VA Hospital in Washington DC. My treatment to date has been
Casodex– 2 tablets a day -Started 22 July, as of my last appointment on 29 August me and the Doctor agree to stop that so could use later if there is a need. (https://www.healingwell.com/community/default.aspx?f=35&m=2169075&p=4 - has the details)
Zoladex – First treatment 4 Aug – Early Nov is next (for bones)
Zometa - First treatment 8 August Second on 6 Sept (Lupron equivalant)
Calcium 500 MG / Vitamin D 200 Unit Tab

My Doctor said we will watch how things progress. He did say continuous is the standard of care but they may stretch out the time frame or reduce the dosage. But again it is too early in the treatments.

My take, if you trust your medical team. go with what they are recommending BUT bring your questions to them and have the discussions.

I would ask about the joint pains - never hurts to ask. The only dumb question is the one that is not asked.

Live Long and Prosper!

Bud
Posted 9/15/2011 9:43 PM (GMT 0)
For the joint pain, does excercise help at all?

it actually made mine worse in the shoulders and hips, and i had a lot of joint pain and stiffness.  i was like an old man for more than a year.  getting in and out of a car was painful. standing up from a seated position or especially a crouched position was embarrassing.

ed

Posted 9/15/2011 10:14 PM (GMT 0)
Now that I think of it, I do have shoulder and neck stiffness in the morning. I thought it was from lifting weights.....oh and btw I can get a full night's sleep when I take a Sandoz, although I don't want to make it a habit.
Posted 9/15/2011 11:00 PM (GMT 0)

F8 said...
For the joint pain, does excercise help at all?
it actually made mine worse in the shoulders and hips, and i had a lot of joint pain and stiffness. i was like an old man for more than a year. getting in and out of a card was painful. standing up from a seated position or especially a crouched position was embarrassing.

ed

I have been on HT since August of 2009. Over that period of time my joint pain and stiffness increased a lot as my arthritis got worse. Whether or not the increase was due to HT, or to the fact that I aged two years during this period, is for now open to question. Perhaps I will have a better answer to this in several months when I am fully off HT. I had my last Lupron injection four months ago, and discontinued Avodart and Casodex about the same time.

When we are on HT our first inclinations appears to be to blame it for all that ails us. Unfortunately the act of aging must also be taken into account, which confuses the issue because we don't all age the same.

Sancarlos
Posted 9/16/2011 1:24 AM (GMT 0)
San Carlos -- i have been off HT for more than  a year.  aches and pains are all gone.  in fact i feel so good now (because i felt so terrible before) that i feel like i'm 10 years younger then when i started lupron.  it may be different for you but that's my experience.

ed

Posted 9/16/2011 2:38 AM (GMT 0)
Jeez..I still dont see all the fuss about Lupron....I guess I need to wait a little longer.

I started July 13th (over 2 months) and dont feel much change at all. testosterones down to 8 and PSA down to 4.1 so its working....but yet to have 1 hot flash, rash, ache or pain. I have felt some fatigue but my doc told me thats from the radiation.

Also still able to have sex about 3 or 4 times a week....(depneding on my wife...LOL)

Its a little harder to get an erection but still do...just takes longer. My clinical study nurse told me some never experience any side effects from Lupron so I guess I wait and see.
Posted 9/16/2011 2:39 AM (GMT 0)
I also forgot to mention ive lost 16 pounds since starting Lupron....which is also not the norm...but then again Ive changed my diet a lot and exercise more.
Posted 9/16/2011 2:44 AM (GMT 0)
casper -- you may be the exception cool .

ed

 

Posted 9/16/2011 3:04 AM (GMT 0)
Like casper I also haven't felt the side effects of the HT as of yet. It must be to early. Started first injection of Lupron in early July. Very few and light hot flashes so far. In fact when I told my med. onc's nurse about it I think she was disappointed!! I'm also on my 29th of 44 treatment of rad. and just now feeling a little tried at work. I just shut my door and everybody thinks I'm on a conference call, But I'm napping.
Really not looking forward to more side effects but I'm sure they are coming.
Can the veterans here tell us newbes when to expect it? Also like Casper I have lost over 20 lbs changing diet and exercising more knowing the Lupron will put on the weight. Trying to stay ahead of it. Is it a losing battle?
Posted 9/16/2011 4:45 AM (GMT 0)
Can the veterans here tell us newbes when to expect it?

the side effects crept up on me but they got worse with time. sex vanished after about a month.  i didn't have hot flashes until about seven months.  you sound like you are doing everything right and to me that means you are winning the battle.  hang in there!

ed

 

Posted 9/16/2011 9:37 AM (GMT 0)
I am on the 10th-month mark of Eligard (6-month shots) which has lower the testosterone to chemical castration levels at less than 0.30 ng/ml. This low level in androgens has given me numerous side effects typical of “menopause”, but mild symptoms. Hot flashes and joint pain become more noticed at the beginning of my second shot but they occurred momentarily occasionally. Fatigue has set in since the start of the treatment.
I have not taken any medicine to counter the effects. I believe that my daily walks (7Km) and a change in some habits have helped in making them unnoticed.

I am hopeful for HT on an intermittent modality. My doctor commented that I would be off-drugs if PSA would kept a level lower than 0.05 during 12 month. So far the PSA is on such levels (since May) so that I will get another shot in November which may be sufficient to hope for a “Vacation” in 2012.
Posted 9/16/2011 2:02 PM (GMT 0)
This maybe a stupid question,

While on Lupron, what should my Testosterone levels be?

I'm have a hard time getting someone to even do my PSA testing. I'm sort of stuck between my ONC and Family Doctor......
Posted 9/16/2011 4:34 PM (GMT 0)
"Can the veterans here tell us newbes when to expect it? Also like Casper I have lost over 20 lbs changing diet and exercising more knowing the Lupron will put on the weight. Trying to stay ahead of it. Is it a losing battle?"

It seems that men have very different experiences with Lupron. Everyone suffers loss of libido. For me the first 6-9 months were the worst. I had mild depression, hot flashes and night sweats, became anemic (which caused considerable fatigue) and had some bone density loss. I was treated for the anemia and bone density loss and rather quickly regained my energy. During the second year of HT I seem to have done well, with my only complaint joint pain and stiffness.

Anyone on HT should have a bone density test and make sure they are not Vitamin D deficient. Good bone health is essential in protecting against metastatic spread of the PCa to the bones.

Weight gain should also be avoided during HT to protect against cardio-vacular disease.

San Carlos
Posted 9/16/2011 4:46 PM (GMT 0)
Glenn,

Your testosterone should ideally be below 20. Studies have found that 32 is the cutoff for effectiveness. It is important to have this tested, as some men do not respond fully to Lupron. Hope you can get your doctors to cooperate. My general practitioner does all this stuff for me. He enjoys learning about a it all.

Nellie
Posted 9/16/2011 5:04 PM (GMT 0)
Sancarlos...and others

My 80 year old husband has been on Lupron since last November with few side effects.  His Urologist did suggest taking Calcium, but not the dosage amount.

What mg of Calcium and iu of D do you suggest be taken daily?

Thanks

Joyce

Posted 9/16/2011 5:20 PM (GMT 0)

Riviere said...
Glenn,

Your testosterone should ideally be below 20. Studies have found that 32 is the cutoff for effectiveness. It is important to have this tested, as some men do not respond fully to Lupron. Hope you can get your doctors to cooperate. My general practitioner does all this stuff for me. He enjoys learning about a it all.

Nellie

 

Thanks Nellie......I'll take that info with me to my FP.

Posted 9/16/2011 5:33 PM (GMT 0)
PA-grandma

My Dr.Son-in-law, Urologist and Oncologist have me on Calcium 500 MG / Vitamin D 200 Unit Tab – twice a day. I take one tab in the morning and one tab around lunchtime.

Bud
Posted 9/16/2011 5:55 PM (GMT 0)
Joyce,

I take Calcium 600mg + D twice a day, in the morning and in the evening. I also take Vitamin D3 supplements, 5000 iu tablets once a day.

San Carlos
Posted 9/16/2011 6:22 PM (GMT 0)
According to Medical Oncologist Stephen B. Strum, (co-author of A Primer of Prostate Cancer) T levels should be held at or <20 ng/dl, and the PSA UDT level of <0.05 for at least 12 months before considering a vacation of ADT.  During this time both levels should be monitored (every 3-4 months) to make sure alls well.  If it is, then enjoy the off time of which it may take a couple of months before the medication wears off and the T level gradually increases.  Depending on how effective the original treatment was (surgery, radiation, etc) will determine the length of the good times.

I should be the poster boy for Lupron because I had EVERY side effect known to exist because of its use, including a sneaky one that you should be aware of.  Bone loss.  A bone density test (DEXA or QCT) is suggested at the earliest of PC treatments so a base line can be established early.  Don't let ADT surprise you later with a Dx of Osteoporosis.  In some cases it can happen very quickly.  I was surprised after a density test that I had developed severe Osteoporosis and I am taking Calcium Citrate (2,000 mg. daily) and Vit D3 (5,000 iu. daily) to help reduce its rate of loss.  My Oncologist advised that Zometa is in my future but is holding off for a little while longer.  He has said the same thing about ADT, which is not a big surprise because of the slowly increasing PSA. 

I have had a good run during this vacation (except for the ED, which is another story) and have all the confidence in the world about having another down the road.......

Hopes this helps answer a few questions.

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