Friday, March 12, 2010

Correction: I HAD a Donor

Thursday I learned that my high-quality donor has decided to move on to other challenging opportunities. I am sure they had very good reasons to cut and run in the middle of an evil, moonless, snowy night. Maybe someone showed them my blog!

By the way, if any of my readers have a drop of Cherokee in their blood and are otherwise boring (Scots, Irish, and English with a touch of French), as well as type A–, by all means volunteer as a donor. Tomorrow, if at all possible!

My sub-space radar had been warning me of catastrophe for more than a week. By now we should have been testing cardio and respiratory functions. A schedule should have been established. My doctor should have called me back last week.

When he came into the exam room Thursday he very much wanted to talk about something good first, anything at all, but me, I wanted my suspicions confirmed right away. Yes, I had no donor. For a few hours after that I walked into walls, screwed up my appointment calendar, and was unable to string together two coherent thoughts. 

Here's my general advice to doctors on reducing patient fears. Make sure there's a compact in force: bad news will travel quickly while good news can take its time. If doctor and patient both understand this, then, when there is no news for a couple of weeks, the assumption by the patient will be that all is well. With that understanding, patients can stop needlessly worrying and use their time more productively or enjoyably (in my case, I have a new wife with which to play). Violate the compact just once and I doubt it will work again.

The team is now sifting through the pile for another donor. I am sure I'm somewhat wrong on the details, but I think there are about eight million registered donors in the United States. I think I heard that about 8,000 of these are a possible match for me (6/6 HLA). The problem is that the entries are cataloged by six HLA numbers, but I need better than that. Today, the best match is a 10/10, with additional analysis at the allele level. So the "sifting" is technically advanced and time consuming, although I know little about it. I'll find out more and report, if only for curiosity. Even if I have the numbers wrong, you get the idea.

Practically, this setback means I will probably have to find out if arsenic trioxide and vitamin C will work for me, because the cancer is out of control (having had no treatment since January 15). My doctor wants to add melphalan to the mix (resulting in the acronym MAC—don't you just love the proliferation of chemo acronyms in multiple myeloma?), but I don't see the point, having become resistant to all of the other alklyating agents and loath to damage what little working marrow I have left. I fear that next week, after an MRI and a PET scan,  the need for chemotherapy will be unignorable.


  1. Lon,
    Do you have to have the same blood type or can you be the universal vintage?I have no cherokee
    (that I know of) but dabs of all the others you mention with a side order of german and italian but I am O-neg.

  2. Lon,
    A local news reporter from the Desert Sun newspaper recently donated stem cells herself and did an excellent presentation in her column. I have written her to solicit her input to help you obtain another donor. Maybe she can help with her contacts. I sent you a email copy of my request to her.
    Take care, my friend. I know you will be successful in a future allo transplant.

    Eric Vogt
    Palm Desert,CA

  3. Lon, I am intending that you are experiencing all kinds of miraculous happenings to being you and the perfect donor into connection right now... and this IS for the highest and best good of all concerned. So be it and SO IT IS!!!

  4. Here are some facts, taken from the site:

    However, 70% of patients do not have a suitable donor in their family. If you do not have a donor in your family, your doctor can contact the National Marrow Donor Program® (NMDP) to search the Be The Match Registry® for an unrelated donor or cord blood unit for you. The registry lists more than 8 million potential donors and more than 100,000 cord blood units and provides access to an additional 5 million donors through agreements with international cooperative registries. Your doctor can look for adult donors and cord blood units in the same search of the registry and choose the option that is best for you.

  5. UGH!.. I am just catching up and was so curious to know how things were going Lon. Since you are looking for a specific type (match) can the national program launch an advocacy effort to recruit people that may fit your blood type HLA needs. Where do you start? Would the original donor have a sibling that might be willing to be tested? Hang in there.. grey skies always clear up..

  6. Dear Lon, My daughter 2 weeks ago was working with a donor team in search of donors. All over North America are similar goings on. Many donations everyday for this cause. So everyday, and every hour it changes for a possible donor for you. Please don't give in to this. We are praying that your team of docs will find the right one...soon if not now. Lynne Ralph and Lyndsey with prayers for you and yours.

  7. Lon, sending good thoughts for a new match.
    -A caregiver and MM listserve reader


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