Writing to update my progress etc. Just had my 3 month Eligard shot & check up. PSA down again to .45, last reading was .64. Treatment has been Eligard & casodex ongoing for 13 months. No surgery, stage 4 tumor no Mets ,Gleason 9&8 found in all 8 snips after 3D guided Biopsy. Some suspected lymph node involvement. Underwent 45 EBRT which were completed in Late Feb. Urinary symptoms getting worse but tolerable, no bowel problems yet. Also mild hydronephrosis in right kidney, some improvement seen in latest scan in June, urologist willing to wait & see. Recently drove a 5 thousand mile RV trip from Idaho to FL, tough but enjoyable. Had my 78th birthday with family in FL. Almost floored by pets death on my Birthday in FL. Still recovering from that.
Recently,however, I have begun to experience severe joint pain everywhere, knees,ankles,wrists, and elbows. I suspect the ADT treatments but oncologist moved a planned Bone scan up from Feb to next week. Pain treatable with Ibuprophen (Aleve) or varying amounts of both. I know they are the same but they seem to work a little differently with me. One Aleve can give relief for over 24 hours. Does anyone else have this side effect from ADT2.
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I had pain in fingers and toes but not in the large joints. Joint pain is a relatively common side effect of ADT. The Lupron "drug label" that I read at the time (2004) said up to 33% of men get it. However I thought that pain in the small joints was much more common than in the large.
You can look up any drug in the FDA label database here: labels.fda.gov/ It's a complicated database and you have to do some digging to get to an actual label document but, once there, you can usually find something with a name like "adverse reactions". Don't stop at the first place you find that but keep looking. Eventually you should get to a page that lists all of the negative side effects that people had with the percentage of patients that had them in the main clinical trial.
Thanks Alan, I generally read all the literature and was aware of this possibility. The severity & the rapid onset is what took me by surprise. I try to exercise regularly and still hit golf balls when the weather permits. Planning to take up golf again after 25 years.
Not sure if my suggestions will help, but it cannot hurt. Check my bio and you will see that I have taken every drug and now in chemo.
While undergoing chemo, Med Onc added Vitamin B-6 at 100mg/day to help prevent neuropathy in extremities. He also added 1 Claritin taken for 6 days around Neulasta injection to minimize bone pain.
Might be worth a try in your case, as these are fairly benign supplements.
Vitamine B6 is not effective for the treatment of chemo-induced neuropathy. There has been a placebo controlled clinical trial that has demonstrated that B6 is no more effective than placebo ( link.springer.com/article/1... ). This does not speak to the issue of prevention of neuropathy.
You are right Joel. I've read quite a bit on this subject and the only relationship I could find between neuropathy and B6 is that B6 in large enough quantities causes nerve damage. At one time it was thought that B vitamins were safe in large doses because they are water soluable. This has been proven to be false.
Here's a quote from an article:
"We used to think that B vitamins were harmless because, like vitamin C, they’re water-soluble and therefore can’t accumulate in the body like fat-soluble vitamins (A, D, E, and K). However, we now know that too high an intake of certain B vitamins can be troublesome. For example, vitamin B6 (pyridoxine) can cause nerve toxicity although it usually doesn’t do that in doses lower than 200-300 mg per day. Over time, higher doses of B6 can be harmful and may result in nerve damage, producing numbness and tingling in the extremities that may eventually be irreversible. Be sure to discontinue use of supplemental B6 if you notice any unusual sensations."
As my post said, my Med Onc suggests 100mg of B-6 daily as a potential prevention of chemo-induced neuropathy, not to solve a problem you already have. Just to clarify.
Mark, I understand, at best B6 might be preventive. It is clear that as Gregg has stated that overuse of B6 can itself cause neuropathy. If you do add the 100 mg make sure that you also add in any B6 you might consume from other multivitamins or supplements you also take.
Thanks Mark, I owned supplement stores for 25 years and use them continuously and always look for those solutions first. I have always used Boswellia (frankincense) for inflamation, but there are times when only aleve will work.
Regarding your urinary symptoms, I had a major frequency issue and tried a couple of meds. Finally was prescribed Myrbetriq (50mg per day) and it works very well for me
I had a lot of joint pain and stiffness, particularly during the first 6-months after I started Lupron and was undergoing chemo. I found that exercise and stretching helped a lot. As Mark suggests, if you are taking Neulasta, Claritin helps a lot, too.
Please keep us posted on your ongoing progress. And have a great day!
I cannot use Myrbetric due to it causes a rise in Blood pressure, I have also had a Quad Bypass and struggle to keep BP in the 130/80 range. Thanks for the suggestion
Joint and muscle pain is one of the more common side effects of ADT. I've been on triple ADT going on 4 years now and experience joint pain, I exercise daily. I use ibuprofen sparingly to alleviate joint pain.
I was aware of this side effect, what took me by surprise was the severity and rapid onset after a year of treatment. I did suffer thru a respiratory viral infection prior to the onset which could have contributed. Thanks to all who replied
Yes sir! I’ve had the same symptoms, joint and muscle pain and even phantom pain and neuropathy. You can say promoted by ADt for sure but achieving our goal of 0 testosterone is the culprit. I know because I thought the symptoms of adt would diminish when I opted for orchiectomy in place of shots for life. I still have symptoms but I enjoy not to going to get regular shots. I’m on a test Adt drug Tak-700 and recently cut dosing by 1/3 to hope fully decrease joint pain complaints. Many have dropped due to those complaints. Diet of course is huge on fighting inflammation.You mentioned Alleve . Before APC I used to use alleve for muscle aches and pains. I went into kidney failure due to APC tumors blocking my urethra. I had been taking Alleve pm for some time prior, including the night of K.failure. Woke after surgery with tubes out of back. The visiting neauphrologist told me emphatically “never” use alleve or others like it. Long road trips = not great for someone with urological issues. I’m in a much better place now after almost 3yrs of treatment and 11/2 with no visible signs. If you’ve perused these pages you understand that this is just one day in a lifelong procession to live beyond the worry of the haunts of APC. No mets= that’s good, sorry for the pain ,diet and exersize..are main options for joint pain. I’ve done 30 mgs of cbd’s The none phycoactive part of medical marijuana for about 4 months now .My joint pains and general aches are lessened greatly. Legal in every state. Ginger and turmeric also help me. Hope that your symptoms diminish and healing continues . I also was non op stage 4..For us in that category there are no guarantees of medical cures .There is just dealing with the cards that we’re holding at this moment. We fear that joint pain indicates bone mets ..So far not true in my case and hopefully Not for you either. Good luck!
Thanks Lulu700, Very good advice, glad you are doing better, I have some CBD oil and have been experimenting with small doses. Fingers crossed for next weeks scan.
Lulu is the good lookin 3lb puppy in my pic. She’s now 14 months 12lbs and full grown .Sorry to hear of your pet going on your birthday. That’s terrible. Guess you can salute that love to that pet on your birthday from now on .My lulu heals me when I need it. And that is daily. Good luck on the scans!
My picture shows me holding two toy Poodles, The one in my right arm is PJ the one we lost, had him to love for 15 years. Suzy on the right is 8 and will be around for quite a few more years.😊
I had joint pain for most of the first year of Lupron (six month interval) and then it gradually diminished. Now beginning fourth year and not noticeable. There are so many things going on as you begin these treatments (plus age) it is not easy to detect the source of new aches (or were they really new?) Have now completed Provenge and will know in one month what is next. I found being active reduced the joint pain along with an Aleve now and then. Good luck.
Thanks Shepard, Hopefully I will have a clean scan next week & then I can only worry & deal with simple Joint pain. I am 78 and have never had joint problems. Was athletic and stayed in shape. Never any body fat until now, It is amazing how the lack of T causes fat accumulation. I hate it but realize it is necessary.
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