Waldenstrom's Macroglobulinemia Cancer

[69690jay]

Hi, I have a friend who has this rare Cancer.

I am trying to help him get an experienced doctor as most doctors have never had a patient with this form of cancer. He has been living in Phuket Thailand for many years.

Many thanks,

Jay

Edited October 18, 2009 by 69690jay

[Sheryl]

It is a type of non-Hodgkins lymphoma, admittedly a rare type, so best bet in Thailand is a specialist in lymphoma. As your friend lives in Phuket I would suggest going to Bangkok Hospital in Bangkok to consult one of the following dioctors, reason being that while he would certainly have to go to Bkk for initial consultation and occasional follow-up, they could arrange for med refills and tests etc to be done at Bkk Phuket Hosp thus reducing the number of trips he'd have to make.

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

http://www.bangkokhospital.com/App/doctorp...&Lang=en-US

The above are Western-trained hematologist/oncologists and some are board certified in the field in the US or UK. Don't know if any have as pecial interest in Waldenstrom's but they will have all heard of it and be experienced in treatment of lymphoma in general. The first one listed appears to have the most recent western experience which may be an asset given recent and ongoing research in treatment of this condition.

Your friend should feel free to have consultation with more than one of then so he can select the doctor who seems miost interested and qualified and with whom he feels most comfortable. And bring all existing test results/medical summaries with him when he goes, most especially report of bone marrow aspiration.

The standard treatment for this condition is not curative, it just prolongs life. When he consults specialist he should specifically ask about the following non-standrad treatments which are currently under investiagtion and have proven helpful in some cases:

* high does chemo combine with autologous stem cell transplant: stem cells are removed from the patient's own bone marriow before chemo, stored, treated to remove cancer cells and then trabnsfused in after thep atient has had high dose chemo.

* splenectomy (only if his spleen is enlarged). this removes a major source of IgM and has produced long remissions in some patients.

* the drugs thalidomide and bortezomib, both of which are already used to treat multiple myleoma and thus available, but are also being studied in clinical trials for use in treating Waldenstrom's.

Depending on this person's nationality, age and overall health, it might be worth seeking enrollment in a clinical trial, there are several ongoing. Would require a return to the West. I can help in identifiying possible trials if he is interetsed. Most are being conducted by the US National Cancer Institute but there may be some European participating institutions.

Without a clinical trial or one of the "non-standard" treatments listed above, the most he can hope for is a temporary remission and the disease will ultimately be fatal, sorry to say. So if he is otherwise in good health and relatively young it might be worth considerable effort to avail of cutting edge treatments.

See also http://www.cancer.gov/cancertopics/factsheet/Sites-Types/WM

[wmozzie]

Hi, I have a friend who has this rare Cancer.

I am trying to help him get an experienced doctor as most doctors have never had a patient with this form of cancer. He has been living in Phuket Thailand for many years.

Many thanks,

Jay

G'day Jay and thanks for caring for your friend. As you say, WM is very rare and even more rare among those of Asian or African descent than of European, so it may well be less common in Thailand than in Australia.

I'm Support Group Leader for the 'WMozzies', the Australasian section of the International Waldenstrom's Macroglobulinemia Foundation headquartered in Florida. There are currently no closer support groups operating in Asia.

First, do go to the Foundation's website: (it seems I can't post the URL so search for "IWMF" )where you will find a wealth of information about WM and can request a snail-mail package of information for the newly diagnosed.

Second, I have searched my extensive files without finding any Thai clinicians specifically engaged in the international forums about this disease. However a search of Google Scholar does reveal a number of scientific papers published by Thai researchers such as at (search for "pubmed/19702069") . This is a very recent paper in The Journal of the Medical Association of Thailand by authors from Srinakarinwirot University, Bangkok. They report a case study of a tricky diagnosis and treatment which indicates to me that the authors are well versed in the difficulties of this area of hematology. (The underlying lymphoma for all cases of WM is classed as lymphoplasmacytic lymphoma (LPL). A diagnosis of WM also requires that the paraprotein produced is IgM. The authors successfully diagnosed an even more rare case of LPL producing IgA instead of IgM. The treatment combination they used would be quite typical in any of the leading cancer centres in the West.) If I were in Thailand I would feel confident consulting the authors.

Third, even in Australia where we have around a hundred diagnosed cases, there is only one clinician who particularly specialises in WM: Professor John Seymour of the Peter McCallum Centre in Melbourne. However most of us are treated in the major teaching hospitals of each state where any haematologist / oncologist will be well versed in the condition. I expect your friend will find that while they may not encounter it often, Thai specialists will similarly be able to access the latest information. Professor Seymour has shown himself willing to consult with local clinicians, as are the world's leading researchers at centres like Dana-Farber and Mayo Clinic in the U.S.

Fourth, as a patient myself, diagnosed fifteen years ago and well up-to-date on the disease, a word of caution. We have been primed by the media over the years to think that "cancer" must be discovered early and treated aggressively. This is NOT NOT NOT true of WM. The experts do not treat because of the "numbers", the test results they get from the blood and marrow though it is wise to monitor them every three months or so. They treat only when the symptoms truly warrant it. So your friend has time to assess the situation before rushing into treatment. If you wish, you can contact me directly at <[email protected]> with details of your friend's test results and symptoms and I'll help if I can.

Hope this helps a little. gareth

[Sheryl]

Many thanks for your input, Gareth.

I have done a bit more research myself and it looks like the leading expert on all types of Lymphoma in Thailand is Dr. Tanin Intragumtornchai who is head of the Chulalonghorn Dept of Hematology and also its Bone Marrow and Stem Cell units. He has experience with autologous stem cell transpants so might be worth consulting in that regard if the docs listed at Bkk Hosp cannot help. Although anything he might be able to do would probably have to be at Chula, the easiest way to get to see him directly would be at Saint Louis Hospital where he has occasional private practice. Don't bother with their website, call them and will probably need at least a week notcie, he is a very busy man.

[69690jay]

Sheryl & Gareth thank you for your efforts to help, I will pass this onto him.

Thanks again,

Jay

[Maizefarmer]

... and most, if not all of the doc's named in Sheryls very informative contribution, will also be contracted to practise at one or other of the state/government hospitals in the area as well - as most are required to do, especialy if they are specialists or teaching doc's - and that means there is a chance he could get much the same treatment through the state system, but substantialy cheaper.

As a rule folks, if you are living in Thailand and on a budget with limited, or no health insurance (as a lot of ex-pats are) the large State teaching and regional hospitals in Thailand can offer all that the private hospitals offer but at far cheaper rates. Okay, the rooms may not be as flash, the menu may not be Westernised and you may not have sat TV in your room, but the nurses, doctors and medical care is up to the same standard. So don't overlook the Thai State hospitals.

10 days in a Thai state hospital ICU a few years back cost me the grand total of just over Baht 36 000 (everything included) - try get that, for a bed alone in a single room from a private hospital - never mind doctors fee, medicine and dressings included