I sure hope you don't have myeloma!

--am I correct in assuming that you've had normal blood work-ups done, including CBC's, on a fairly regular basis, and no blood cellular abnormalities have shown up?

The disntiction here is between cancers of the bone tissue itself ( and primary bone cancer is very, very rare) and cancers of the blood marrow/cell producing regions--myeloma falls into the second category. If there was some suspicion of the latter, likely some tell-tale signs would have shown up, such as increased immunoglobulin levels, or evidence of rogue monoclonal protein on immunofixation electrophoresis (have you had one of those recently)? Plus, your serum calcium levels (especially ionic levels) would likely be significantly elevated.

Of course, neither of these are an outcome anyone likes, and I hope this is not in the cards for you. (Given you history, though, I'm still suspicous that metabolically something is leaching the calcium out of your bones.)

Glenn,
I've had regular blood work. They did an electrophoresis test in Oct when I received the transfusions. Everything was normal at that point. But I was told the only way to be sure was to do the bone biopsy. I resisted. Everything else was normal and so I saw no need for it.

There will be more bloodwork done and a repeat of some of it.

Billye

Billye I am among the ones who'd love to help you. I am sorry, unfortunately I can't ¡... i am only wishing and praying for your recovery i hope the blood work comes back fine.

A number of the women believed to be suffered from autoimmune illness relating to implants have tested positive for MGUS. This is the abnormal (rogue) protein found in Multiple Myeloma. People with MGUS sometimes go on to develop MM, although this is supposed to be rare. (MGUS=monoclonal gammopathy of unknown significance)

As far as the rogue monoclonal protein goes, there was nothing to suggest that I had this, nothing... I read of these findings in one of the implant support groups, went to my Immunologist and insisted on being tested for it. He was floored when it came back positive.

While physicians I have spoken with assure me that there are no symptoms relating to MGUS, some of the women have reported that there are indeed symptoms. I would say that it is hard to differentiate between what is related to their autoimmune symptoms and what might be related to the presence of this protein. Also, many have neuropathy.

If my memory serves me correctly, this protein can also cause a neruopathy of sorts. I pointed this out recently to my Oncologist, whose response was that if this was actually the cause of my neuropathy, Prednisone was the treatment...

Perhaps the immunofixation electrophoresis is above and beyond protein total and protein electrophoresis, as they were recently normal. However, the protein finding is clearly positive in my Oncologist's testing; her testing must go above and beyond protein electrophoresis in some manner, but this is beyond my level of understanding...

I will query the support group to see if any are suffering from bone loss or fractures and post this, if I find out anything.

Cathie

--the presence of monoclonal proteins in the blood, even in the absence of blood dyscrasias, has been shown to be associated with neuropathy; thre seems to be a cross reaction between the antibodies and certain glycolipids on the surface of nerve tissue (sort of like a key that happens to fit a certain shaped lock).

Neuropathic symptoms are more common with an elevation in the IgM class or gammoglobulin, though they can occur with elevations in all the other classes (IgA, IgG), or with elevations in more than one class.

The immunofixation electrophoresis of serum and urine is the more specific test to detect these--a protein electrophoresis is not enough, as small elevations in the gammaglobulin portion may be obscured in such a test. If these are detected, a number of other tests are then performed, including calcium ion and bone marrow biopsy. The finding of M-protein is actually fairly common in older people (roughly 2% in people over 50, and about 5% in people over 70).

The Washington University Neuromuscular website describes this well:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

Glenn,
It is very over my head. We will see what Monday or Tues
brings. I just refuse to dwell on it until I know what I am dealing with. Yeah...I know sticking my head in the sand.

Billye

"When you hear hoofbeats, think of horses."

When a patient's been on MTX, think of osteoporosis. When they are known to have osteoporosis, think of osteoporosis when they have fractures.

Don't think of zebras. Myeloma, osteosarcoma--these are zebras.

Nothing indicates it and I'm very optimistic for you.

J Endocrinol Invest. 2007 Jul-Aug;30(7):590-7.

Looking beyond low bone mineral density: multiple insufficiency fractures in a woman with post-menopausal osteoporosis on alendronate therapy.

Lee P, van der Wall H, Seibel MJ.

Department of Endocrinology and Metabolism, Concord Repatriation General Hospital, The University of Sydney, Sydney Concord, NSW 2139, Australia. pcylee@gmail.com

Insufficiency fractures occur most commonly in the pelvic girdle and in the sacrum, followed by the tibia and the femoral neck. Insufficiency fractures of the femoral diaphyses are rare, with only few reported cases in the literature. The strongest associations exist with untreated osteoporosis. We describe an unusual case of multiple insufficiency fractures in a 73-yr-old Chinese woman who presented with a 10-month history of bilateral groin pain and difficulty with walking in the absence of trauma, diagnosed 18 months following the commencement of anti-resorptive therapy with alendronate. The pathogenesis of such insufficiency fractures is poorly understood, but next to low bone mineral density and micro-architectural damage likely involves other components such as changes in bone turnover and patient-related factors (e.g. non-compliance). This case report and review of the literature draws attention to some of the challenges in the diagnosis and management of such rare insufficiency fractures.


2: J Bone Miner Metab. 2007;25(5):333-6. Epub 2007 Aug 25.

Pelvic insufficiency fracture associated with severe suppression of bone turnover by alendronate therapy.

Imai K, Yamamoto S, Anamizu Y, Horiuchi T.

Department of Orthopaedic Surgery, Tokyo Metropolitan Geriatric Medical Center, 35-2 Sakae-cho, Itabashi-ku, Tokyo 173-0015, Japan. imaik-ort@umin.ac.jp

Publication Types:

* Case Reports


PMID: 17704999 [PubMed - indexed for MEDLINE]

3: Joint Bone Spine. 2005 Oct;72(5):372-5.

Osteoporotic fractures of the proximal humerus, pelvis, and ankle: epidemiology and diagnosis.

Guggenbuhl P, Meadeb J, Chalès G.

Rheumatology Department, Rennes Teaching Hospital, South Hospital, 16 Bd de Bulgarie, 35203 Rennes cedex 2, France. pascal.guggenbuhl@chu-rennes.fr

Although fractures involving the wrist, spine, and proximal femur are known to be strongly associated with osteoporosis, the underlying bone insufficiency often receives insufficient diagnostic and therapeutic attention. Osteoporosis also increases the risk of fractures at other sites. Low-energy fractures in patients older than 50 years should lead to investigations for osteoporosis, the only exceptions being fractures of the skull, cervical spine, fingers, and toes. The incidence rates of fractures of the proximal humerus, pelvis, and ankle are climbing relentlessly. Whereas fractures of the proximal humerus and pelvis are undoubtedly related to osteoporosis, the link is less well established for fractures of the ankle. Mortality and morbidity rates associated with pelvic fractures are similar to those seen with fractures of the proximal femur, in keeping with the fact that both fractures occur in elderly individuals.

Publication Types:

* Review


PMID: 16214070 [PubMed - indexed for MEDLINE]


Mayo Clin Proc. 1988 Aug;63(8):807-12.

Insufficiency fractures of the pelvis that simulate metastatic disease.
Hauge MD, Cooper KL, Litin SC.

Division of Hematology/Oncology, Mayo Clinic, Jacksonville, FL 32224.

Insufficiency fractures of the pelvis, which almost always occur in elderly women with osteoporosis, are often misinterpreted as metastatic disease. The initial symptom of such fractures is severe pain unassociated with an obvious history of trauma. The typical sites of involvement are the sacrum, the iliac bones, and the pubis. The plain film appearance of the sacral and iliac fractures is usually subtle and easily overlooked, and bone scans will show the abnormal areas more readily. The existence of multiple fractures not only in the pelvis but also in the vertebrae and ribs should suggest the diagnosis of insufficiency-type stress fractures. Computed tomography can exclude the presence of a destructive process and an associated soft tissue mass, as would be seen in metastatic disease. If insufficiency fractures are identified in the typical anatomic locations, bone biopsy is unnecessary.


1: J Clin Densitom. 2000 Summer;3(2):203-6.

Osteolysis of the pelvis presenting as insufficiency fracture in a patient with rheumatoid arthritis.
Duston M.

mduston@Actel.net.

Physician awareness of the risk of osteoporosis and subsequent fractures in a patient with a history of long-term steroid treatment is high. The tendency to assume that a fracture is owing to steroid-induced osteoporosis may result in an unnecessarily intense antiresorptive treatment regimen for a patient who may not have osteoporosis. I report here about a patient with rheumatoid arthritis who presented with bone fracture despite antiresorptive therapy and without evidence of osteoporosis by bone mineral density testing.



Br J Hosp Med. 1995 Jun 21-Jul 11;54(1):15-9.

Insufficiency fractures of the sacrum and os pubis.
Peh WC, Khong PL, Ho WY.

Department of Diagnostic Radiology, University of Hong Kong.

Insufficiency fractures are increasingly seen among postmenopausal women. Sacral fractures are difficult to detect clinically and radiographically, while os pubis fractures may mimic malignancy. Diagnosis is made by bone scintigraphy, supplemented by computed tomography. As patients respond well to conservative management, increased awareness and use of appropriate imaging may avoid unnecessary and invasive investigations.


AJR Am J Roentgenol. 1985 Sep;145(3):601-6

Pubic and sacral insufficiency fractures: clinical course and radiologic findings.

De Smet AA, Neff JR.

Distinctive vertical insufficiency fractures of the pelvis were found in nine osteopenic patients. Each patient had subacute pelvic pain without antecedent trauma. The sacral fractures healed fairly quickly, but the pubic fractures often had a protracted course. Eight patients had combined sacral and pubic fractures; one had only sacral alar fractures. In three patients the sacral fractures preceded the pubic fractures by 3-4 months. All nine patients had skeletal demineralization due to metabolic bone disease, radiation therapy, or multiple myeloma. Recognition of the association between pubic and sacral insufficiency fractures should aid in recognizing the diffuse nature of the skeletal disease so that unnecessary biopsy of the fracture sites can be avoided.





J Manipulative Physiol Ther. 1994 Sep;17(7):485-8.

Pelvic insufficiency fracture simulating metastatic bone disease.
Stern PJ, Côté P, Dust W.

Canadian Memorial Chiropractic College, Toronto, Ontario.

OBJECTIVE: To present a rare case of pelvic insufficiency fracture mistaken for metastatic bone disease. CLINICAL FEATURES: A 58-yr-old female received 3 wk of chiropractic treatment for mechanical low back pain. The treatment offered no relief. Two months later, a bone scan revealed increased uptake in the pelvis, suggesting metastatic bone disease. A CT scan demonstrated several pubic fractures. Subsequent biopsy failed to show evidence of malignancy. A diagnosis of insufficiency fractures secondary to osteoporosis was made. INTERVENTION AND OUTCOME: She was referred to a rehabilitation clinic for physiotherapy and medication. She consulted a rheumatologist and was prescribed calcitonin. Ten months later, she was improved and the fractures had united. CONCLUSION: The absence of trauma frequently delays the diagnosis of parasymphyseal insufficiency fracture. The ambiguous X-ray features often lead to a diagnosis of metastatic bone disease. Early detection is important as significant morbidity may result from delaying the treatment.



J Radiol. 1986 Oct;67(10):741-4.
[Spontaneous fracture of the sacrum due to "insufficiency". An overlooked cause of low lumbago in elderly women]
[Article in French]

Guilbeau JC, Arrivé L, Maurice F, Nahum H.

A case of insufficiency fracture of the sacrum is reported. These fractures usually occur in elderly women and are secondary to various conditions, mainly postmenopausal or steroid-induced osteoporosis and radiation therapy. They are often overlooked or confused clinically and radiographically with metastatic disease. Findings on plain films are often subtle. Radionuclide bone scan shows a characteristic H or butterfly shaped pattern of increased uptake in the sacral alae. The diagnosis is confirmed by conventional tomograms or CT which show the fracture always surrounded by prominent sclerosis.

--as I mentioned, if you had a bone marrow condition that was contributing to this, there probably would have been some blood test signs that would have pointed in that direction.

On the other hand, many of us here are not only zebras, but quaggas (google that one up).

I suspect that there is something about what's currently going with you on that is related to abnormal calcium/vitamin D absoprtion/processing, and that generally makes one suspect drug interaction, or hormonal insuficiency, first.

You've been busy girl!!! Thanks for all the articles. I thought I'd print them out for the ortho PA. I think she has some things to learn. And knowing her, she'd be willing to learn.

I called, asked for and got my test results this morning. Reading them myself, I believe I'm in the clear for bone cancer. They show significant arthritic activity and lots of breaks. But some of the breaks seem to be healing. So I guess I'm doing something right. I will still meet with the doctor and PA on Friday and get the official results and see if they have any more suggestions.

Many, many thanks for all the good wishes, research, love and support. You are all a super group of friends to have!

Billye