Leukemia and Bone Marrow Transplants -- Bad Week part II

[QuietLoud]

In mid-May I started a topic about my having a bad week and in particular, that I had a break-in. The other thing that happen that week was that I was called by a friend, Emru Townsend, and I found out that he had been diagnosed with Leukemia. I mentioned this in another topic related to animation, and that I was doing research in order to start a topic specifically about this.

As I sit here in Toronto, it it past midnight, a couple of weeks later. I have been trying to get the research done, but along with the fact that I am already providing care for someone else, and dealing with other "minor emergencies" that arise in fairly normal living, I have not gotten as far as I wanted to. But my internal "risk evaluator" says "time's up!" I have to get this started now. His problem is not going to wait just because I am busy. I will try to post more when I get more information, and maybe correct stuff I post as necessary. I will try not to get anything wrong in the first place, but there is always a chance I will make some mistakes.

The Story Goes:

I have known Emru for a number of years. I met him through work in the computer field. He is a writer who has been published in some noted magazines. If you have bought computer equipment, particularly in the graphics fields, or some mobile stuff, you might have relied on his reviews. He is also the editor/publisher/owner of "FPS Magazine", and a recognized expert in the animation fields. I mentioned that he has been in charge of SIGGraph, which is the major computer animation festival. Emru has a small family of a wife and young son. He is not wealthy, he is a working man, putting in long hours, along with his wife, hoping to raise a child with a learning disability.

In December of 2007, he received the bad news. Having been diagnosed with leukemia, he has gone through "chemo" and it has not gone away. Now he is existing on blood transfusions and waiting, and hoping that he will find a bone marrow stem cell donor match, so that a transplant can be done, which will reduce or eliminate his current need for transfusions. In this regard, he has another problem. He is Black. It is ironic that as race is finally being put behind us, and we are finding it less and less relevant in most aspects of our lives, he is being slammed by that fact hard. It IS possible that a bone marrow match will be found, and that it might be from someone who is Chinese, or Italian, or whatever, but statistically, it is most likely going to be someone who is also Black. The problem is that in Canada in particular, few Black people have come forward to register for bone marrow transplant donation.

We, his friends and relatives have to reach out to the Black communities (there is more than one), and encourage Black people to come forward and register as bone marrow transplant donors. This is hard for me because I am naturally not a public speaker, nor do I like to "lead". I am by nature an independent who normally says "do what you want (and don't bug me!)." I am not the kind of person who does well in "community" situations. Yet I think I am going to have to do something this time.

If you are not Black, I would still like to encourage you to register as a potential donor. You might not match Emru in particular (though, as I said, it is still possible that you will) but you might have a chance to save someone else.

Please check out Emru's website. If you have questions, feel free to post them here and I will try to get answers -- as best as I can.

http://www.healemru.com/

[Edited 2008/06/07 -- spelling corrections.]
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[Cafe du Monde]

QuietLoud,

This is an extremely noble thing (unwittingly, of course) you're doing for your dear friend, and I hope that through your efforts a matching donor comes up. Cancer of any type can be quite devastating for those involved, but from my experience it's usually harder on the patient's family and friends than the patient himself. No one wants to watch someone he loves slowly succumb to the debilitation that cancer and its treatments causes, and it pains the patient like no other to see his loved ones worry and despair over him. I'll keep Emru and his family and friends in my prayers. Keep the faith, believe.

[hvand]

As a leukemia doctor, I can not tell you how important it is to register as a bone marrow donor.

Most donors do not donate "bone marrow". Most donate blood stem cells that can be harvested by a procedure called "hemopheresis". This is the same procedure that is used for platelet donation and it eliminates the need to go to the operating room. You can refuse if you actually get called, but most donors find it does not take a great deal of time and it is very satisfying.

QuietLoud is quite right that there is a shortage of ethnic donors. Nevertheless, I would encourage everyone to register.

You can register by going to the following site http://www.marrow.org/. You can pay $52 dollars and have a kit sent to you. Simply, swab your cheek and sent it back. You can also find details on donor drives in your area. These are usually free.

If you want more information on bone marrow transplant, you can check out the links at http://www.ibmtindy.com/resources/internet.htm

Personally, I'd like to see as many trumpet players sign up as possible. I think my patients would feel better if they had the blood of a trumpet player running through them.

QuietLoud, thanks again for posting. Emru has my prayers as well.

Hank

[MrClean]

[hvand]

Mr Clean,
Don't worry ... I would never accuse you or anyone of being anything for asking this question. I agree that the cost is a real disincentive.

Unfortunately, HLA typing involves extracting DNA and running some sophisticated tests to determine your "immunologic signature" as it were. Add shipping, clerical costs, etc and you will go well past $52. When siblings get typed the cost is well over 10 times this amount.

The web site allows you find donor drives in your area. These events are almost always free for donors. Churches and civic groups can organize these drives and raise money to pay for typing.

My advice for individuals interested in signing up as donors is to call your nearest bone marrow transplant center. UNC has a donor drive every year and there is no cost to the donor. Most university medical centers with transplant programs have similar drives.

My advice for you, Mr Clean, is to contact the City of Hope Medical Center http://www.cityofhope.org/blooddonorcenter/marrow.htm. They pay for the cost of typing by asking potential donors to donate blood or platelets. Pretty clever!

(I just gave advice to a member of the LA Phil )

Thanks for your interest ... there are many patients in need of donors.

Hank

[MrClean]

I can definitely afford it, but it occurred to me that there are some people out there that will balk at the cost, which will cut back on the number of people willing to submit to the "database", if you will. Seems there should be federal money subsidizing such a program.

J

[hvand]

Don't get me started about federal funding ... I'll wind up in TH jail. But, you're point is an excellent one.

The history of donor registries in necessarily a pretty one. Cost is one of several hurdles that have kept us from maximizing the number of donors. Fortunately, we are making progress. I like the City of Hope's program. I was unaware of it until this morning. I may even talk to the folks at UNC about adopting a similar program.

I'd love to see an entire brass section sign up as donors. It would be a good PR move for the symphony and a great one for bone marrow transplant programs.

Hank

[QuietLoud]

A lot has happened already. If you have checked out Emru's Website (above) I think the news has been posted. A single match has been found. This is NOT a guaranteed solution, but we are very hopeful. The first big obstacle is that the donor still has the right to change his/her mind and decided not to go through with it. As mentioned above, this is NOT a high risk procedure for the donor. I am not a doctor, but it sounds to me about equal to a regular dental appointment type risk. The risks are mainly on the recipient side.

However, even if the transplant happens, there are possibilities of it not working for one reason or another, or, it may work for a while and then leukemia comes back -- not a surprise if you have heard about other cancers in general. So as I see it, I am uplifted by the hope, but no plans have changed. I am still going through my contacts and looking for further contacts, etc.

About the cost: As mentioned above, there are FREE testings -- sometimes. Unfortunately, I think you have to check into it in advance to know for sure. Emru told me of one situation where there was a free testing and nobody was mentioning the fact that it was "FREE!" They did not get the fact that it was an issue. Sad, but that is the kind of mistake that happens in this world. "Real People Making Real Mistakes!" Life's like that. . . .

http://www.cbc.ca/canada/montreal/story/2008/06/05/qc-bonemarrowdonor0605.html

The above is a link to a CP report on the current situation. It is wrong because it seems to imply the the problem has been resolved. That is premature. The finding of a match is a Really Big Deal, but it is NOT a resolved situation.

Anyway, thanks for the comments. Hopefully I will have more to add within the week.

[Edited 2008/06/07, spelling corrections.]
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[QuietLoud]

Carolyn Tam is a Canadian of Chinese ancestry in the Toronto area who is in a similar situation as Emru. At this point, she has her own supporters, and I think what little time I have is better spent trying to help Emru more directly. But if I see a possibility of coordinating something with her supporters, then I might get in touch with them. Anyway, here is a link to her Website:

http://www.savecarolyn.com/
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[QuietLoud]

By now, some of you are probably surprised because I have been posting generalities, and you probably wondered why I have not posted specifics. I will be getting down harder facts as best as I can, but as I wrote above, my research has not been going as well as I would like. The problem is that this is not an area I have canvassed before and there is a huge amount to read. These first numbers are from "the OneMatch registry" managed by "Canada Blood Services", through Emru.

"On March 31, 2008, there were 233,273 Canadians registered." The following is the ethnic breakdown. Keep in mind that these numbers are for the whole of Canada:

Caucasian 195,949 (registrants)
Asian (unless otherwise noted) 10,264
East Indian 6,998
Aboriginal 2,566
Black/African 1,633
Hispanic 933
Chinese 233
Multi-ethnic 233
Other 9097
Unknown 5,365

The Black/African was only 0.7% of the registry, (and regarding Carolyn Tam, the Chinese is only 0.1% of the registry). Think about 1,633. What would that be? About the population size of a couple of high schools?
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[QuietLoud]

The following information is from the 2006 national census.

In the "old days" the "City of Toronto" was a part of "Metropolitan Toronto" and in fact was about 1/4 of Metropolitan Toronto, both is physical size and population. After amalgamation, a few years ago, the whole of what was "Metropolitan Toronto" became the new "City of Toronto". Apparently, the national census still uses the old categories. I live in the "Metropolitan Toronto" census area.

Anyway, the Census collected data on "Visible Minorities" and the follow data was taken from the results for "Metropolitan Toronto":

Category -- Toronto (Ontario)
Total Population -- 5,072,075 (12,028,895)
Chinese -- 486,330 (576,975)
South Asian -- 684,070 (794,170)
Black -- 352,220 (473,765)
Filipino -- 171,980 (203,215)
Latin American -- 99,295 147,140)
Southeast Asian -- 70,215 (110,045)
Arab -- 53,430 (111,405)
West Asian -- 75,475 (96,620)
Korean -- 55,265 (69,540)
Japanese -- 19,010 (28,080)
Visible Minority ("other") -- 46,705 (56,845)
Multiple visible Minority -- 60,075 (77,400)
Not a visible minority -- 2,898,005 (9,283,695)

If you want to see the whole table I took this data from it is at:

"http://www12.statcan.ca/english/census06/
data/profiles/community/Details/
Page.cfm?Lang=E&Geo1=CMA&Code1=535__&
Geo2=PR&Code2=35&Data=Count&SearchText=Toronto&
SearchType=Begins&SearchPR=01&B1=Visible%20minority&
Custom="

NOTE: I broke down the above URL deliberately because it would mess up the display for people reading on narrow screens.
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[QuietLoud]

Again, in perspective, in the CBC (Canadian Press) article linked above, it was reported that there were/are 500 searches going on right now in Canada for bone marrow matches.

I hope to get a bit more information in this regard. Also, I will post a bit of the stats I have specifically for Leukemia.

Also, another disease that can be treated with bone marrow transplants is sickle cell anemia. And there are a few other diseases also.
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[skootchy]

Back in 1985 I became a potential Bone Marrow Donor. I have been on the list ever since and have come "close" twice. The first time they found a closer match and the second time was "too late". I became a donor for free because I donated some platelets in a process called Pheresis. If you jump in the program through a Pheresis donation then you are automatically typed for bone marrow donor free. I also understand that certain ethnic groups are free registration because of the overwhelming need. This information may have changed since then so check it out through your local Red Cross. Everyone should be a potential donor. There are people dieing out there and they could be walking right past a cure. That is very sad folks. BTW; here is a definition of Pheresis from Wikepedia: Pheresis (pronounced as fur-ee-sis) is a special kind of blood donation by which specific components of the blood can be separated. It came from a Greek word meaning 'to take away' or 'separate'. By this method, the blood components like plasma, erythrocytes, platelets, granulocytes (neutrophils and basophils), and agranulocytes (lymphocytes and monocytes) can be separated. The pheresis is done using a machine called a cell separator. The separation is based on density gradient centrifugation The separated components are collected in separate vials or specialized polythene bags in the machine.
The pheresis procedure, or apheresis, is often used to obtain stem cells from the peripheral blood of a person having a blood disease (such as leukemia), which are at a later time reinfused (often after some sort of processing) into that patient's bloodstream in a procedure known as an autologous bone marrow transplant. In this type of transplant, the sick person is his own donor. Similarly, the procedure is often used to obtain stem cells from a healthy person in a procedure known as an allogeneic bone marrow transplant. In this type of transplant, another person (whether related or not) is the donor.
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[QuietLoud]

CBC maintains "background" pieces on various common news issues. Their piece on "Chronic myelogenous leukemia" (CML) was last updated October 9. 2007. This article covers some general information but focuses on CML because that was a specific type of Leukemia that had been mentioned in specific news pieces at that time. I do not know what Emru has, except that it has been complicated by something called "Monosomy 7".

http://www.cbc.ca/news/background/cancer/cancer-cml.html

According to that report, the "Canadian Cancer Society" estimates that in 2007, 4,200 Canadians would have learned they have leukemia. Also, "[T]he five-year survival-rate for all types of leukemia is 47 per cent." It is estimated that "[w]ithin five years, just under 2,000 of those people will die of their illness."

[This estimate seems to include people with and without treatment. So that would include the extended lives of those with bone marrow transplant. On the other hand, I calculate that it also implies that around 226 of those people diagnosed with Leukemia will have died within 5 years of other causes.]

According to this article, "the four most common leukemias are:

* Acute lymphoblastic leukemia (ALL)
* Acute myelogenous leukemia (AML)
* Chronic lymphocytic leukemia (CLL)
* Chronic myelogenous leukemia (CML)"

Regarding CML, this article says "that the mutation that causes CML is not hereditary . . . , it develops spontaneously during the everyday process of cell growth. The older you are, the higher your risk of developing the disease, with most cases striking between the ages of 45 and 55. CML also tends to be slightly more common in men than in women."

[From readings so far, it would seem that these last comments tend to be fairly common for other Leukemias, except that some tend to occur in very young children, and the preference of men over women was not something I noticed as generally prevalent. However, I must point out that my research is both rushed and at this point superficial. I could be wrong on these matters.]

NOTE: If leukemias are primarily due to random and fairly rare errors of normal cell division, then we can expect that as the average life expectancy increases, a corresponding increase in leukemia will occur. This means that leukemia can be expected to increase somewhat in the near future.
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[QuietLoud]

I am a little numb right now. The older you get the more deaths accumulate in your memories. Some are sad. Some are shocking. There are others. There are times when you live in anticipation of death. I have known what it is like to live with someone close to it. For the past 9 years I have bounced in and out of hospitals and care facilities looking after people, and being close to people in their last years. My friend Emru is not dead yet. We, his friends have had varying amounts of hope for his future. Being closer to the medical world lately, I have to admit that I never got my hopes up too high. He told me early on what the real complications were, and now, we are heading into the lower chances of a good outcome. This is is latest message:

The good:

I'm back! Actually, I've been home since last Friday, trying to readjust.

The bad:

The reason for my discharge and transfer back to my old hospital is because although the transplant itself was an awesome success by any measure, I haven't gone into remission.

So what does this mean? Well, there's a chance that I'll develop Graft vs. Host Disease (GvHD) which might attack the leukemic cells. But frankly there are too many ifs in that statement, and there's no guarantee it would wipe it all out, as far as I know.

The ugly:

I asked one of my hematologists in Ottawa how much time he figured I had. He said less than a year. I asked the same question of my hematologist today, and she said weeks, maybe months.

Those are the facts about the leukemia. I have a lot more to write, but I started today about twelve hours ago by collapsing and needing to be be brought in to the hospital by ambulance. I'm quite tired. I have just enough energy to ask a favour. Could thouse of you who are on mailing lists I'm on (or used to be on) please post this? I don't have the energy to go to PWAC-L, the various SIGGRAPH lists, CE-L, and so on. You'd really be helping me out a lot. Thanks.

Again, Emru is not the only one going through this kind of thing. Rather than feeling sorry for him, I know that he would appreciate it if people reading this were motivated to do something positive. In particular, to volunteer as transplant donors.

I think that I would add to this right now: For some reason I do not know, in Canada we seem to be short of blood donors lately. Since Emru has survived for months now on blood transfusions, I think he would probably appreciate my suggestion that even if you are unsure of whether you would like to become a stem cell donor volunteer, a donation of blood could also help save a life.
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[QuietLoud]

My good friend Emru Townsend passed away before 22:00 on November 11 in the company of family members. Because I live as far as I do, and am helping to provide care for others, it is unlikely that I will be able to attend any ceremony of remembrance for him. This is sad irony, but life is like that. . . .
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[Tuningbell]

Hello Everyone-
I know with Wayne Bergeron's diagnosis and the passing of Ryan Anthony cancer is in our community as it is in all communities. I know there are some cancer experts on this site and was hoping for some insight into something that just made me burst into tears. I was diagnosed with Ann Arbor Stage 3 NHL in my abdomen and groin. With suspicion of co-occurring DLCBL and CD 10 Follicular Lymphoma. The Follicular is confirmed by biopsy the DLCBL is suspected by PET scan SUV values. Anyway, I tried to play today and my lips are numb! Could barely feel a buzz. Honked out a few notes but couldn’t really play and felt disconnected to the horn. Is RChop neuropathy only hands and legs or could I experience it in my lips? I no longer play as a pro for a living but was hoping to be able to nourish my soul and spirits by playing Christmas carols, hymns and the blues ( for obvious reasons) I’m not experiencing any other neurological issues and actually feel pretty good after my first treatment. 5 more to go. Any insight on this would be helpful. I’ll be discussing this with my Haematologist as well. Cheers - john

[blbaumgarn]

I have been on the bone marrow donors list for twenty years. Would go anytime they ask. We had a drive to register people in the city where I live for several people affected at the same time. It is such a simple way to help someone. I know two people who have been called and contributed. In one of those cases it gave someone a new lease on life. I hope and pray that your friend finds a match soon. I would that it would be me to donate. It really is a simple way to help someone.
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there is one that lives to lay waste to woodwinds and strings, leaving them lie blue and lifeless along a swath of destruction that is a
trumpeter's fury-then there is the dark side!" Irving Bush

[LittleRusty]