2 years post DX and still in pain...how about you??

Deb I just had to respond to your question concerning bone pain.......a year before I was dx I started having severe pain in my left knee.........took Advil for a year............then came the dx in January 06 and all the bone scans...........I didn't really understand at the time what the docs were doing but I remember laying on the table with the scanner starting at my feet and slowly moving up my body and I'm thinking they are looking for more cancer..........and then I thought this is why my knee has been hurting so bad.........got the scan......of course they kept going over my lungs...........sarcoidious.........but anyway very advance degeneration and arthritis in left knee.............triple neg here so after taxol/ac I could barley walk............I walked like GrandPaw on the Real McCoys........3 months ago I was at pcp and I asked her about possibly Vit D levels.........she took blood work right then and called me 2 days later and said Vit D was 9 and should be between 45 and 55..............she put me on Prescription Vit D 3 months ago....I take one pill a week 50,000 i.u.'s per week and 2 months ago my knee and all my after affects of treatment have disappeared..........for the first time in 3 years my knee does not hurt and I no longer limp.............my joints have stopped hurting etc.........now Deb I still have canceritits but at least I'm no longer in the physical pain I had been enduring for so long.........check with the doc and have blood work done...............especially living in Alaska.............you aren't getting your vit d from sunlight..........just a thought.................Love Shokk

I was diagnosed in December of '04.  Had latisimus flap reconstruction, dose dense ac&t and 1 year herceptin.  Now I am taking tamoxifen for 5 years.  I'm so glad to know that I am not alone in my "achiness".  My arm hurts (breast cancer side) if I use it too much, my knees hurt, almost everyday somewhere hurts and its been almost 3 years since surgery

Hi Deb - didn't read super carefully, just to joint pain.  I think it might be worthwhile to see a rheumatologist - either they'll have advice for athritis, or be able to rule it out.  And it might be fibro or something else....worth checking.  IMHO.  Hope you feel better soon!

Also, I've been told magnesium in the evening will help with relaxing and muscle pain.

On the alternative side of things, for fibromyalgia I found that an amino acid supplement called Seriphos worked well for pain.   Kind of blew me away the difference it made.  But every body is different.

Hope you feel better! 

HUgs to you Deb....

  Yes, post bc is not all its cracked up to be except that we are NED.

I am 3 years out, maybe almost 4 come March. But I am on aromasin after a hsyterectomy and ooph last year. I am only 44. I too am always in some kind of pain. My joints hurt. I am fatigued alot. And I don`t mean a little tired. I mean exhausted. Some mornings I can hardly get out of bed. I have started going to bed very early too.

I have pain on my mastectomy side too. Sometimes in the chest, but mostly on the side at the bottom of my ribs. My latest ultrasound was Sept. It showed dilated bile ducts in my liver, which the doc said is usual since I don`t have a gallbladder. But this achy pain continues. I have had bone scans too.... and xrays in various spots. It seems the tests say I am healthy... including the blood work. I thank God for that. But I am dealing with feeling crappy most of the time. I exercise intermittently.... I try to eat right. I take vit D and calcium. I started taking magnesium with my calcium which seems to help the fatigue a bit.

I don`t know the answer. Maybe this is my new normal. I try to keep my whining to a minimum because I am sure my family is sick and tired of me being sick and tired. Especially when there seems to be nothing wrong.... My mom actually said to me once I must want something to be wrong because I keep going to the doctor and having tests done. The nerve!!

So I am just letting you know you are not alone. I can totally relate to your angst.

Wendy A

AD - I think you've got some good suggestions here.

That's great that you joined a gym. Will this be in addition to your swimming or did that not work out?

I think, with the gym, that "going for the burn" is NOT what you should do. Go, but take it easy. Overdoing at the gym will just get you an injury and sideline you.  So go ahead and be the person who is walking the slowest on the treadmill, or just doing the 2-3 pound weights.

Don't sign on for spinning or heavy duty aerobics.  Look for a class with lots of old "geezers." No, I don't think you are a "geezer", but that's the group that will move at a reasonable pace and not get into competitive spells.

It's about you moving around a bit more, getting those juices flowing into those joints, not about what somebody else who has spent the last 43 years of their life training can do. So go, but go easy!  

Deb-  Since you are asking for Vitamin D levels to be taken;  You may also ask your Gyn if she would run an ANA lab on you.  It's an Antinuclear Antibody Test.

It helps screen for autoimmune processes like Rheumatoid Arthritis, Lupus--many, many others.

Even in Fibro it can run high. 

Patients with autoimmune disorders can have a wide variety of symptoms such as low-grade fever, joint pain, fatigue, and/or unexplained rashes that may change over time.

Even if you get what is considered within a currently normal level for vitamin D, -that doesn't mean your are getting the optimum level re: current research.

Nicki--I was going to let you know that in a month or so both Actonel and Fosamax should be available in generic formulations.

But, on reconsideration, I'm thinking-- Maybe a lucky break for you that you didn't take it.

Consider this from the FDA:

A recent FDA article describes severe pain associated with two bisphosphonate drugs: Fosamax (alendronate sodium) and Actonel (risedronate sodium).

The article, which was published in the Archives of Internal Medicine, describes over a hundred reports received by the FDA of severe bone, joint and muscle pain in patients being treated with Fosamax for osteoporosis. Many patients were unable to walk, climb stairs, or perform usual activities, and some of them became bedridden. Many of them had numerous diagnostic tests with mostly normal findings.

A majority of the patients experienced relief from pain after the drug was discontinued. This improvement was gradual in most of the patients, although some did show immediate improvement.

The article also notes that the FDA has received similar reports for Actonel, another bisphosphonate drug, and this suggests a possible class effect for these drugs.

The article says that pain in patients treated with bisphosphonates is likely to be underreported because of its subjective nature and because physicians may attribute the pain to the osteoporosis itself. It concludes that patients should be instructed to report severe bone, joint, or muscle pain that starts shortly after beginning bisphosphonate therapy, and that physicians should consider discontinuing the drug if that happens.

Additional Information:

Wysowski DK, Chang J. Alendronate and risedronate: reports of severe bone, joint and muscle pain. Arch Intern Med 2005;165:346-347.
http://www.fda.gov/cdrh/psn/show-54-alendronate.html 

 

 

Just came back to read more on this great thread (thanks Deb!). My bone, joint, muscle pain started in 2007.



Wow, I am truly amazed at the FDA warning about oral bisphosphonates and this kind of pain.

Maybe that explains some of our problems.



There is a new drug,Denosumab, which may supplement or replace the bisphosphonates eventually, due to their problem with osteonecrosis of the jaw.. It's in a large phase III trial now: women and men with new bone mets, past use of oral bisphosphonates but not IV bisphosphonates ok. There's some evidence in the lab mouse it impacts bone metastasis.



Thank you all for your great insight,

Tender