Alan Suher, CT, USAIn 1998 I woke up with all of my toes numb. This was the beginning of what would be six months of doctors, tests, more doctors and more tests. I feel very lucky that after only a half year a new Neurologist, I had an appointment wit…
Just receive is some very crucial information regarding POEMS from Alan Suher. Please vidsit his website at: http://poemssyndrome.info/. I have forwarded his email to Mrs. Lane and her son.For those who need this valuable information here is what Alan …
I received this email from Mrs. Lane and her aooeal for help. I am asking anyone out there who has pertinent information to help. Here’s Mrs. Lane’s eamil:
I saw your email on the Myeloma website for Atlantic Canada. My son, age 46 was diagnosed in November with CIDP. After 2 months not getting any better, he was admitted to hospital on January 6th and has been there every since. He was diagnosed with MM and several days later told he also has a rare syndrome POEMS..Its now been 2 1/2 monthas and he has had several treatments,Dex ( steriods) 13 radiation treatments and is now on chemo for 4 treatments, 14 days apart. The hospital is now in the process of getting thalitomide from the US.He has severe polyneuropathy and is bedridden 24/7..This is the 1st case of POEMS for the hospital so this is all new to them as well as us.Any information would begreatly appreciated,Thank You,Jean Lane.
I offered this help, but I am also asking that you out there who read this post to also help:
Dear Mrs. Lane,
Pray is a powerful thing but in order to help yourselves you and your son need to know what it is you are dealing with. There are many resources at your disposal, among which is the Mayo Clinic online. There you may find out what you are dealing with. Information is your greatest strength; another are the people with POEMS and they are perhaps your greatest resource.
With the first part, reliable information is paramount. I suggest you go online to (click the link below; you may have to ctrl click it):
Don’t let it frighten you; above all you need faith and belief in your son’s recovery or medical control by your doctors of what he has. Another source of information is NINDS.
National Institute of Neurological Disorders and Stroke (NINDS) find CIDP Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Click on this link. Again do not let this frighten you, you must control you emotions.
Finally, you must seek out those who have your son’s condition and the IMF is the best location I can think of and its list server is the location to find help. Here is the link to the IMF
When there go to find support; there’s a link at the top of the page. Get on the List Server where other MMers communicate. Ask for help, information on your son’s condition and those with it will respond and overwhelm you with information and therapies. Remember, you are not ALONE; there’s HELP. Don’t give up, PRAY and get into ACTION. I have copied this to my friend Susan and she can help you also.
I sincerely hope this helps,
IF ANY OF YOU CAN HELP PLEASE EMAIL ME AT:
Osteonecrosis of the jaw in patients with multiple myeloma treated with zoledronic acid.
Department of Oral and Maxillofacial Surgery, Faculty of Dentistry, Gazi University, Ankara, Turkey.
Intravenous bisphosphonates-the potent inhibitors of osteoclast-mediated bone resorption are among the most commonly prescribed drugs in the management of multiple myeloma (MM). Zoledronic acid (ZA) is a new generation potent intravenous bisphosphonate that has been approved for the treatment and prevention of bone lesions, and/or hypercalcemia associated with MM. Osteonecrosis of the jaw (ONJ) is an emerging serious side effect of the new generation bisphosphonates with a growing number of reports related to this pathological entity. ONJ usually appears following oral surgical and dental procedures but sometimes occur spontaneously. These cases are mostly seen and treated by dentists and oral surgeons. The aim of this study was to discuss the frequency, characteristics, risk factors, management and histopathological features of ZA induced ONJ based on the literature and illustrated with five own cases. Thirty-two patients with MM who received ZA for a median period of 26.5 +/- 18.7 months (min: 5 months, max: 76 months) were evaluated. ONJ was detected in five patients and mean drug duration time was 34 months. The frequency was 15% and the patients were usually symptomatic. There was no significant difference in terms of the duration of ZA in patients with and without ONJ. Management of these established cases were performed with medical treatment, minor debridement, sequestrectomy, and combining bone resection with autologous platelet rich plasma. Our data indicate that ZA therapy has a major role in the development of ONJ a fact that should be considered by physicians treating MM patients.
New generation pharmacotherapy in elderly multiple myeloma patients.Ataergin SA, Kindwall-Keller T, Berger NA, Lazarus HM.Gulhane (GATA) Faculty of Medicine Department of Medical Oncology and Bone Marrow Transplantation Unit, 06018, Etlik, Ankara, Turk…
Emerging therapies for multiple myeloma.Podar K, Tai YT, Hideshima T, Vallet S, Richardson PG, Anderson KC.Dana-Farber Cancer Institute, Jerome Lipper Multiple Myeloma Center, Department of Medical Oncology, Boston, MA 02115, USA. email@example.com…
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