unexplained pain.

[GoEZ]

OK, I need some advice on recent event. In the last few weeks I have had stiffness in my hips to the point of affecting my walking, It’s not all the time but it does happen. I also have a cold sensations going down my thighs and steady lower back pain not affected by movement. This weekend I went to the ER because of pain in my right side under my ribs. All test showed negative and blood work was good. The only thing was Lower retrocaval lymphadenopathy measuring 3.3 x 2.2 cm and others lymph nodes borderline. I have a doctor’s appointment in a month. What do I ask or do. Thanks Guys

[MJCA]

You may be experiencing pain from your meds. Could it be arthritis? Has there been a change in the weather where you are over that time period?

[GoEZ in reply to MJCA]

yes i do have arthritis. this is different and new. the weather has been nice till 2 days ago. the problem has been with me for a few weeks.

[Break60 in reply to GoEZ]

What do you take for your arthritis? I take celecoxib and duloxetine. No pain.

[GoEZ in reply to Break60]

nothing, its not that bad yet. it is just a dull ache in my hands and shoulders.

[Break60 in reply to GoEZ]

It’s not cancer then. Ibuprofen should help

[Break60]

What kind of imaging did you have? If it was just an mri or bone scan it may have been insufficient to see PCa.

[GoEZ in reply to Break60]

I've had C-scan with contrast. Two lymph nodes were smaller. Last scan was about 8 months ago. This weekend I had to go to the ER only problem was some lymph nodes were enlarged. Plus the problem with my legs is new and has been there for about3 to 4 weeks.

[NPfisherman]

Consider taking indomethacin for the pain with abiraterone... may help overcome resistance to abiraterone

ncbi.nlm.nih.gov/pubmed/277...

As for zytiga, it can cause leg pain, tingling...

mayoclinic.org/drugs-supple...

looked at your profile, it looks like PSA is going up, and if you add indomethacin and need a little more help for abiraterone consider changing from prednisone to dexamethasone...

ncbi.nlm.nih.gov/pmc/articl...

It could just be arthritis or zytiga side effects, so adding indomethacin for the pain makes sense in my opinion...

All the best,

Fish

[GoEZ]

No

[GoEZ]

Abiraterone started in June 2018. I have failed on Bicalutamide and Enzalutamide. Abiraterone has been the best so far. There is alot less pain and more energy.

[RalphieJr64]

You said you were CT scanned. What about bone imaging?

[GoEZ in reply to RalphieJr64]

Bones are clean.

[DaughterOnAMission]

Did you do radiation? My dad is having horrible leg pain from radiation and zytiga.

[GoEZ in reply to DaughterOnAMission]

I had radiation 9 years ago.

[paulparry]

Sounds very similar to my experience. Mine started with Sciatic type pain and we decided to Radiate the hip on the sacroiliac joint to relieve the pressure and pain. This worked but has left the area inflammed and very sore.

Exactly as you describe from hip, lower back and then legs.

I am waiting on an appointment and hopefully a new scan.

I have been informally told its likely arthritis on the hip but could relate to Sciatic because of the leg pains.

Will let you know. Good luck

[gleason9guy]

I've long experienced the same thing. Treatment included chemo, radiation, Lupron, and Zytiga. Prostate still intact but swollen, and one lymph note appears crystalized on an MRI. That hip pain and stiffness gets better when I'm off the Zytiga for a little while. The doctors have never seemed to be concerned about this issue, at least, compared to the larger issue of the cancer and keeping it from spreading. If the pain gets too bad, I take Ibuprofen and some pain meds.

[GoEZ in reply to gleason9guy]

Thanks.

[DaughterOnAMission in reply to gleason9guy]

What's "a little while" how long do you go off Zytiga? Safely?

[gleason9guy in reply to DaughterOnAMission]

If I take a break of a week, then usually I'm feeling better. The doctor reluctantly approves this, as he knows I get to feeling pretty bad. Again, the side-effects seem to move in waves. For me, it's just been a matter of tracking the side effects and staying on top of what I'm taking when.

[GoEZ in reply to gleason9guy]

Thanks

[Currumpaw]

Hey GoEZ!

You've had all the other tests and nothing found?

Arthritis even an old injury, trauma from a fall can make a hip hurt. Cold sensations down your thighs? Sciatica? Lower back pain as well as pain under your ribs?

Have you been to a good chiropractor? Are you taking cod liver or fish oil? Do you do stretching and strength exercises that will release synovial fluid to lubricate your joints?

Get a assessment of your spinal vertebrae by a good chiropractor. If your spine needs alignment it may take a couple appointments a week at first.

If it is available and it seems to be on Amazon, Twin Lab Emulsified Cod Liver Oil is perhaps the best supplement to lubricate your joints. One third of the oil mix is cod liver oil, the other two thirds are emulsifying agents that make it rapidly and highly digestible getting into your blood where it can do your joints good. It is most effective taken on an empty stomach and not eating for a couple hours after. I'd suggest that if you wake at night that would be a good time. If you don't use Twin Lab's emulsified oil get a top brand. Garbage in is garbage out and that applies to supplements as well as IT. Cheap supplements especially cod liver oil are a waste of money.

If you don't do anything else try stretching exercises at home. Taking yoga will help more than you would believe. Once you start to feel better try to strengthen your ligaments and tendons with resistance exercises. Should you do that I would advise you to begin with machines at a gym to build a little strength and don't discount the value of a personal trainer to get you started. After a few months you might consider free weights. Proper form when lifting is essential to avoid injury. Lifts such as the deadlift and squat may very well improve your symptoms and maybe even make them a thing of the past. A good personal trainer to instruct you and starting light at first even with just a bar for squats and light weight with the deadlift.

In my opinion, the best joint supplement available is Joint Vibrance. Take that or whatever supplement that you choose before exercising so that your joints will get the nourishment as the blood flow to them is increased by the exercise.

Do what you can for exercise. Movement and increasing the range of movement is an important factor. Many yoga classes are geared towards folks that have limitations. Don't be afraid that you will feel out of place.

Have you been prescribed quinolones repeatedly in the past? Quinolones are what caused my problems. The report on my bone scan in August 2013 stated that there was a little inflammation in my lower back. The report of my bone scan of February 2017 stated that there was degradation of the joints of both shoulders and my lower back.

The first damage showed up in August 2014 after 3 courses of quinolones for two biopsies and an ablation. Cipro and Levaquin were combined. That morning in in August as I unracked my warmup weight for incline bench pressing tissue in my right shoulder was audibly shredding. That was the beginning. It was only my warm up weight.

How often have you been prescribed or injected with quinolones?

Cefdinir and Rocephin are alternatives to quinolones that don't "eat" the repairs to old injuries in ligaments and tendons which seem to be the low hanging fruit for the quinolones even more so than the Achilles tendons--at least in my case.

Currumpaw

[GoEZ in reply to Currumpaw]

Thanks. There is a lot of good information here.

[SeosamhM]

Sorry to hear of your problems, EZ. I would be lying if I said that I took any new/different pain to be anything but a sign of the progression of my disease! But, after information and reflection ultimately take hold (IF...a big IF... there is no evidence of progression....!), I look for other causes.

The simple fact is that ADT of any kind is insidiously brutal and severely diminishes our body's ability to control inflammation (from whatever source) and fibrosis. In a systemic fight like this, there is often no "direct" cause for the pain that is quantifiable for our good doctors. So they, like the good scientists they are, put our pain in a category of "Nothing we can do...good day!.... What? Still here? Oh, if you insist! Here are some pills that numb everything, lock up your bowels, and in rare instances lead to the taker to believe they are a turnip...but a small price, eh?! Good day!..."

My philosophy is that we must constantly view ourselves in a state of physical recovery that requires active physical therapy of some kind. PT is a process, not a treatment.

Currumpaw has some great insight and lays out many tools we can use. I would add medical massage to the mix if chiropractic care is out (which it is for me - multiple bone mets, alas). And I would recommend ultrasonic therapy.

Lose your oncologists and look for physical therapists who specialize in or are familiar with cancer patients. Often, the cancer treatment center has (or has access to) these caregivers, but most doctors do not sell or describe PT services (I wholeheartedly believe they view PT as a peripheral, derivative practice of quasi-medicine, if not outright quackery...). AND, these services may be available to you under your insurance (or Medicare).

Good luck. - Joe M.

[GoEZ]

Thanks you

[redbank]

are you taking a statin at all for cholesterol perhaps?

[redbank]

oh by the way Casodex is a brand name of bicalutamide

[GoEZ]

no statins bad reaction to it.

[NPfisherman]

No, the indomethacin is just added--doesn't replace anything... The dexamethasone is used to replace the prednisone---- if that fails....if using the indomethacin works and PSA decreases, then one can hold on to switching to dexamethasone for later and one can get some extra mileage out of abiraterone...

While the number of drugs for this continues to increase, we still don't have an arsenal... better than 10 years ago?--absolutely... would like to have 10 more drugs to use.... we all are here trying to survive and hoping for a cure... squeezing some extra time out of drugs is a strategy to get the most bang for the buck out of our meds....

Sorry my reply wasn't more clear earlier.... I hope this explanation helps...

Fish

[NPfisherman]

We are all warriors fighting the same foe...we should help each other....band of brothers...

Don Pescado