In may 2002 my husband David was diagnosed with acute myeloid leukaemia, M5. He has now had five courses of chemotherapy and recent test results indicate he has leukaemia cells in his spinal fluid.

He is now receiving chemotherapy direct into his spine via a lumbar puncture on a weekly basis and has been advised the best hope of curing him would be a bone marrow transplant. Unfortunately there are no suitable donor matches out there on any worldwide registers.

After his last course of chemo, we made a decision to allow the doctors to proceed with an autologous transplant. David was operated on to extract his stem cells but unfortunately not enough were gathered for harvest and treatment. His bone marrow is too scarred and damaged from the chemo and the doctors are unable to continue with that particular line of treatment so we are now faced with no alternative but an allogenic transplant. He has a particularly rare tissue type which doesn't help and still no donor has been located. Does anyone have any information on independant registries worldwide who are not necessarily affiliated with the Worldwide Donor Registry? Please help, time is running out.

We have two young boys aged 7 and 5 who face the rest of their lives without their father unless a donor can be found.

Thank you.

03/11/02 Many thanks to all of you who who have took the time to read/reply to my post so far, my thanks especially to Jay Tor for yours http://www.healthboards.com/ubb/smile.gif

[This message has been edited by Gina Wiffen (edited 11-03-2002).]

wot blood group,is he??? good luck l have a rare blood group which not alot of people can help if i need any tell me my blood can help loads but only a few can help me if i ever need help goo luck http://www.healthboards.com/ubb/wave.gif

[This message has been edited by niecsey (edited 10-11-2002).]

Hi Niecsey

David's blood group is O negative, but the actual bone marrow tissue typing doesn't necessarily mean that your blood groups need to match.

It's all to do with chromosomes and antogens, ideally a 6/6 match is the least risky of transplants from an unrelated donor match.

What blood group are you out of curiosity? I am A positive which is quite a common one I believe.

Thanks for your reply and your good luck wishes.

Take care
Love Gina.

Hi:

I can appreciate your situation - our child had AML and needed a BMT.

Have your husband's HEM/ONCs mentioned autologous BMT? This is where his own bone marrow would be re-infused after having been treated to kill any leukemic cells. This option isn't ideal long-term but it is a potential interim strategy until an HLA-matched related or unrelated donor can be found.

Another possibility is a stem cell transplant from umbilical cord blood. This is a comparatively new option [past 5-6 years]. Because the HLA machinery isn't fully operational in a neonate/newborn [therefore less HLA-matching required and less overall HLA mismatch risk], and since umbilical cord blood is proportionally much richer in stem cells than adult blood [therefore less volume required for infusion], this option has been used with some success for bone marrow transplant patients who've been unable to locate an appropriate HLA match.

Have you contacted the Bone Marrow Foundation? Although U.S.-based, it provides information and some other resources internationally. Also check the Red Cross Bone Marrow Registry and the Canadian Blood Services Bone Marrow Transplant registry. Israel also has an excellent bone marrow registry.

Good luck,
Jay

[This message has been edited by Jay Tor (edited 10-12-2002).]

Hi Jay

Thanks for your reply to my post. I really am so sorry to hear about your child having AML and needing a bone marrow transplant. How are things now? I do hope your child is ok.

My husband is having to go ahead with the autologous bone marrow transplant which is ok for now, but we have been advised it is by no means a cure, just the best the doctor's can offer to do for now. We have been told to expect David to have a relapse but it's just a question of when.

We are very interested in the stem cell transplant using the umbilical cord blood. So far we haven't actually been offered this, but I will be asking David's doctor about it on Tuesday when he has his spinal tap.

Would you have any objections to my printing your post and showing it to David's doctor? My reasons are so that we can ask them to check the less well known registries in England and abroad. Also what you have stated regarding the stem cells from umbilical cord blood is very informative and is worth them having a look at just to show how interested we are in that particular method.

My thanks again for your reply.

Good luck to you too and take care.
Love Gina.

Hi:

Our child is fine [knock wood] but it's been a long rollercoaster ride. Feel free to print whatever posts/correspondence you feel are helpful. Also, pls check the 'Resource Links' part/posts of this and the general 'Cancer' topics category. I will pull those up shortly for you to browse.

Here are two excellent articles that I strongly recommend you read:

Acute Myelogenous Leukemia

Author: Karen Seiter, MD, Associate Professor, Department of Internal Medicine, Division of Oncology/Hematology, New York Medical College

Hematopoietic Stem Cell Transplantation

Author: Stephan A Grupp, MD, PhD, Director, Stem Cell Biology Program, Children's Hospital of Philadelphia; Assistant Professor, Department of Pediatrics, Division of Oncology, University of Pennsylvania

You should be able to locate these articles quite easily if you type in all of the title, all of the author's name and at least some of the author's credentials.

I also suggest that you visit the Web sites of three of the top U.S. BMT transplant centres: Johns Hopkins, M.D. Anderson and Fred Hutchinson. All three have online patient information.

You're probably keeping track of all of your husband's bloodwork tests, here's a site that explains lab results.
http://labtestsonline.org/understanding/analytes/liver_panel/glance.html

The Merck Manual is another excellent medical information resource - in hard copy, this manual is found in almost every hospital. It's also available online.

Pharmaceutical manufacturers specializing in cancer therapy are another source of information - esp. the very early phase clinical trials. [This, of course, is not an ideal scenario/not where you really want to find yourself in, however...]. The easiest way of identifying these manufacturers is simply by asking the hospital staff and/or HEM/ONC 'Who makes ___ chemo drug?'.

You may have already run into drug reaction and drug interaction problems. There are a couple of very thorough technical level drug interaction sites that use multum information, I suggest you search for them. Otherwise, I recommend MedLinePlus which is a very basic, non-technical drug database. Below is the link to MedLinePlus information on ARA-C [ Cytarabine ], one of the key chemo drugs used in AML therapy.
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202177.html

Web-based research resources: for med/sci articles try Scirus or the Copernik2001 search engine. Cancerlit, through the NCI or Oncolink, sometimes allows access to the most recent Hematology, Oncology and Tranplant journals. Keep in mind that many HEM/ONCs esp. at the teaching hospitals are continually involved in research; they're often aware of or can gain access to preliminary clinical trials results.

Good luck,
Jay


[This message has been edited by Jay Tor (edited 10-13-2002).]

Hi Jay

I am so glad to hear that your child is fine, will keep knocking on the wood for you!

Thanks for allowing me to use your correspondence, it is very much appreciated.

My friends have set up a website to try and help find David a donor, the address is:
http://www.geocities.com/mazncaz/

I will try the resource links that you've recommended, I am sure I will find them helpful.

Once again my thanks to you, I am truly grateful.

Love and best wishes
Gina. http://www.healthboards.com/ubb/wave.gif