Monday, March 30, 2009

Craig Lane's Photo From Webshots

Left, Craig's mother Jean Lane.
The link below connects to a photo of Peoms Multiple Myeloma patient Craig Lane from Newfoundland, who the entire multiple myeloma community sends best wishes for a speedy recovery. Craig if there is anything further we can do to help you, please let us know. Thank you Jason and Jean Lane, Lady Newfoundland.

Frank Boyd (Ed.)

Craig pictures from art photos on webshots

Sunday, March 29, 2009

Updates On Craig MM POEMS Patient

This from Jason,today Sunday, March 29, 2009; I have requested a photo of Craig, Frank Boyd Ed.

Jason here. Just got back from a long day at the hospital. I stayed over last night. it was a pretty quiet night, but by 6am Craig was feeling some anxiety due to the pain. His hip was sore with the way he was lying on the bed. So he was agitated and his oxygen level was low. The nurses took him down to the ICU around 2pm and he's been there since. His blood pressure is low, so they are monitoring that too. His heart rate was high, but he is resting now and that has come down. His oxygen levels are back to 100% and he just got some pain medication. He is feeling discomfort, but they will monitor his condition tonight. They will also do a chest CT scan to make sure there's no blood clotting or infection where the drainage tube is. He's getting lots of attention in the ICU so that's good. He has lots and lots of visitors, but only family can go into the ICU. Hopefully the levels will be stable over night and he can go back up to the 4th floor room (if not tomorrow then on Tuesday). We'll keep you posted.Jason

This from Craig's Mother Jean on Wednesday, March 25, 2009

Hi Frank..Thanks again for your help. I have heard from many MM and POEMS patients. Craig's main Dr came in today and said she was talking to Dr Angela and she gave her some suggestions but Dr Angela didn't think they should use thalidomide. They are coming in tomorrow to explain it all to us.
Today Craig had his 3rd amount of belly fluid removed (21 liters in all 3) but they have left the tube in and have it clamped and will let some more off in a couple days. He has been in hospital 82 days lying flat on his back...he's starting to go stir-crazy..Its been hard for us as well. His brother is coming tomorrow from BC for the second time.We are missing home but will stay on as long as it is neccesary.

Many Thanks for all who have helped,

Jean Lane

We are not put on this earth to see through one another, but to see one another through.

Tuesday, March 24, 2009


Alan Suher, CT, USA

In 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 with, came to a possible conclusion that I had POEMS Syndrome. He said if he is right the illness is beyond him, but he had about four doctors, in various states, that he felt were familiar with POEMS. Thanks for your help Alan, Frank

Myeloma patients from across North America banded together to help a Newwfoundland POEMS patient they have never met. The patient's mother thanks everyone as she writes:

"Hello Frank..I just wanted to let you know I spoke to the Dr. this morning and this afternoon she came in to say she had called Dr. Angela and spoke with her secretary and left a message..Its 11PM and we just got home from the hospital since 10 this morning..

Thanks for all your help and the help of others who have emailed me,


We are all pulling for Mrs. Lane's son and I will give you updates on his progress. Meanwhile I want to thank the myeloma team for a team effort. RUFF! RUFF! RUFF!

Sunday, March 22, 2009

Multiple Myeloma Patient, Richard Brown, a Top Curler

Canadian wheelchair curling championship begins Monday, March 23, 2009 in Lower Sackville.

Nova Scotia’s best wheelchair curlers will take on a strong field at the Canadian Wheelchair Curling Championship beginning Monday at the Lakeshore Curling Club in Lower Sackville.

One of these champion curlers, Richard Brown, underwent a stem cell transplant last February 2008 at the same time as I did. Richard and his lovely wife Sharron are delighted that Richard is going to get to play, and so am I.

Brown, 62, was an able-bodied curler at the club level, curling out of Mayflower for 17 years, before a spinal tumour led to surgery in late 2007.

His condition, multiple myeloma, is treatable, but incurable, and he now has titanium rods in his spine. However, extensive rehabilitation at the Nova Scotia Rehab Centre has allowed him to get around with the help of a walker and, more recently, canes.

This is his first year playing the wheelchair game.

"It’s a lot different because there’s no sweeping," said Brown. "You have to be pretty accurate with your throwing, a lot more accurate than you are in the able-bodied game."

Good luck Richard and Sharron and let us know how you are doing. We are all so proud of you.


POEMS Re-visited Advise from Jeffrey Hoffen and Alan Suher

Just receive is some very crucial information regarding POEMS from Alan Suher. Please vidsit his website at: I have forwarded his email to Mrs. Lane and her son.

For those who need this valuable information here is what Alan wrote:


My name is Alan Suher and I diagnosed with POEMS in 1998. During these 10 years I have learned a lot and I am glad to pass some information on to you. Being in a hospital that has never treated a POEMS patient is not a good situation. In all honesty they don't know what to do because they haven't run this course before. They will do a lot of "trail and error stuff" and that is not the answer.

My recombination's:

Have the doctor in charge of the case contact Dr Angela Dispenzieri the Mayo Clinic in Rochester, MN (USA). The phone number is 507-284-2479. Dr. D. is one of the few doctors in the world that understand POEMS and how to treat it.

Sign up on ACOR.ORG and communicate with other POEMS patients. What could be more helpful then being able to talk to others that have already gone through this route?
Finally, go to the website POEMSSYNDROME.INFO This is a website I recently developed for POEMS patients.

These are my suggestions. If I can me of further assistance, please write me at
Good luck,

Alan Suher in CT (USA)

Thank you Alan and Jeffrey Hoffen

Here is what Jeffrey wrote:

Hi Mr. Boyd

I saw a quick note about someone with POEMS who might need assistance. A website and community of POEMS patients does exist. The web site was generally put together by Alan Suher (email below).

You can contact him, or me, for further information. Dr. Dispenzieri at Mayo is the leading expert on POEMS. Also, if patient can not get to Mayo I would recommend an Academic tertiary care hospital-one that is affiliated with a medical school. This is a complex disease.


Saturday, March 21, 2009


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,

Frank Boyd
Susan Trites

(902) 463-0070


Thursday, March 19, 2009

ONJ Osteonecrosis of the jaw

Osteonecrosis of the jaw in patients with multiple myeloma treated with zoledronic acid.

Cetiner S, Sucak GT, Kahraman SA, Akı SZ, Kocakahyaoglu B, Gultekin SE, Cetiner M, Haznedar R.

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.

Elderly Multiple Myeloma 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, Turkey.

BACKGROUND: Observational databases have demonstrated that the overall prognosis of multiple myeloma patients has markedly improved over the past decade, yet the greatest strides have been attained in younger rather than older patients. OBJECTIVE: To review recent clinical trials that include new generation agents (thalidomide, lenalidomide and bortezomib) and autologous stem cell transplantation in older multiple myeloma patients. RESULTS: Conventional regimens such as melphalan plus prednisone can be improved with the addition of thalidomide or bortezomib: more patients attain complete and near-complete remission, and progression-free survival rates are nearly doubled. In addition, autologous hematopoietic stem cell transplantation studies show that this treatment approach can be used successfully in selected older myeloma patients in whom the toxicity profile of autotransplant and resulting overall survival may be similar to that obtained in the younger patient group. CONCLUSIONS: In the advanced-age population, implementation of new therapies results in significant benefits in older as well as younger patients.

Emerging Therapies for Multiple Myeloma

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.

Multiple myeloma (MM) is a clonal plasma cell malignancy clinically characterized by osteolytic lesions, immunodeficiency, and renal disease. There are an estimated 750,000 people diagnosed with MM worldwide, with a median overall survival of 3 - 5 years. Besides chromosomal aberrations, translocations, and mutations in essential growth and tumor-suppressor genes, accumulating data strongly highlight the pathophysiologic role of the bone marrow (BM) microenvironment in MM pathogenesis. Based on this knowledge, several novel agents have been identified, and treatment options in MM have fundamentally changed during the last decade. Thalidomide, bortezomib, and lenalidomide have been incorporated into conventional cytotoxic and transplantation regimens, first in relapsed and refractory and now also in newly diagnosed MM. Despite these significant advances, there remains an urgent need for more efficacious and tolerable drugs. Indeed, a plethora of preclinical agents awaits translation from the bench to the bedside. This article reviews the scientific rationale of new therapy regimens and newly identified therapeutic agents - small molecules as well as therapeutic antibodies - that hold promise to further improve outcome in MM.

PMID: 19249983 [PubMed - in process

Wednesday, March 18, 2009


What is multiple myeloma?

Multiple myeloma is an incurable yet treatable cancer of the blood in which plasma cells are overproduced in the bone marrow. Plasma cells are a type of white blood cell found in bone marrow that produces the antibodies to help the body fight infections.[i] Multiple myeloma occurs when abnormal cells develop in the bone marrow and divide uncontrollably, eventually crowding out healthy blood cells. Over time these cells can spread to the solid part of the bone, causing fractures and pain.
Fast Facts
Multiple myeloma is the second most prevalent blood cancer after non-Hodgkin's lymphoma and accounts for 1.3 per cent of all new cancer cases in Canada and 1.9 per cent of all cancer deaths.[ii]

According to the most recent Canadian Cancer Society statistics, of the approximately 6,000 Canadians living with the disease, about 1,350 will die this year and 2,100 new patients will be diagnosed across Canada.

Once considered a disease of the elderly, the average age at diagnosis of people with multiple myeloma is the early 60s, with many patients much younger.
Multiple myeloma affects slightly more men than women.
Causes and risk factors
Despite the tremendous amount of work that has gone into the search into the cause of myeloma, to date no cause of this disease has been identified. However, a possible link between exposure to chemicals, pollutants, radiation, or other environmental risk factors and a greater risk of developing myeloma has been suggested.[iii] In most cases, individuals who develop multiple myeloma have no clear risk factors.
Symptoms and diagnosis

There are often no symptoms in the early stages of myeloma. In some cases, myeloma may be discovered by accident during routine blood testing. When present, symptoms may be vague and similar to those of other conditions.

The growth of malignant plasma cells in the bone marrow crowd out healthy blood cells and impact the body in a number of ways, including:
  • Producing fewer red blood cells, which can result in anemia and fatigue;
  • Suppressing healthy white blood cell production, which can lead to recurrent infections;
  • Attacking and weakening of bones, which may lead to osteoporosis and result in considerable pain and potential fractures;
  • Affecting normal kidney and nerve functions.
Because myeloma is a very complex disease, patients may experience all or none of the above symptoms. The diagnosis of multiple myeloma is often made by way of a routine blood test for other conditions. The existence of anemia and a high serum protein may suggest further testing.[iv]

[i] Canadian Cancer Society. What is multiple myeloma? Available online at: Accessed February 17, 2009.

[ii] Myeloma Canada: Cause and Incidence; Accessed February 17, 2009.

[iii]Myeloma Canada. Stronger together. (pamphlet). Fall 2008.

[iv] Myeloma Canada. Diagnosis. Available online at: Accessed on February 17, 2009.



A recent national survey shows that Canadians are divided on how confident they are about having access to the necessary medications, if they were diagnosed with cancer. In fact, 43% of respondents indicated they were not confident that they would have access to the cancer medications they would need.

· Although they are divided in their confidence about having access to the necessary cancer medications, Canadians are optimistic in that they tend to see cancer as something you can live with (64%), as opposed to something you will necessarily die from.

· Greater access to cancer treatments ranked second only to reduced wait times among a list of four potential priorities for government health care spending.

· After being told about the current public insurance coverage for cancer treatments in Canada, the vast majority of Canadians (86%) stated that provincial government programs should pay for all cancer medications approved by Health Canada for those eligible - even if it meant a re-allocation of health care dollars. 84% of respondents felt that all of the provincial governments should have a common list of cancer drugs that they cover instead of having different coverage lists in each province.

· Very few (15%) correctly identify multiple myeloma as a blood cancer. A third (33%) mistakenly identified it as a type of skin cancer and another third (36%) admitted to not knowing what it is.


The findings reflect results of a nationwide online survey of adult Canadians conducted by Angus Reid Strategies on behalf of Myeloma Canada. The study was conducted among a randomly selected, representative sample of 1,002 adult Canadians. Below is the breakdown by region:
· British Columbia: n=140
· Alberta: n=123
· Manitoba/Saskatchewan: n=63
· Ontario: n=356
· Quebec: n=224
· Atlantic: n=96

The data were collected between November 14 and 16, 2008. The margin of error for results based on the total sample of 1,002 is +/- 3.1%, 19 times out of 20. Results have been statistically weighted according to Statistics Canada’s most current education, age, gender and region Census data to ensure a representative sample of the entire adult population of Canada.
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For more information, please contact:
Rosalind O’Connell
Hill & Knowlton Canada
(416) 413-4773