Since his release from Hopkins, Curt's been regrouping and researching new experimental treatments, and trying to stay healthy enough to give chemo anohter round. He can't go anywhere right now b/c of existing infections. Lehigh Valley's second opinion is the same as Hopkins: it may be difficult for him to handle a chemo trial right now.

Nonetheless, Glen (a fraternity brother) works in the field and has heard of a new drug that achieves remission in 58% of refractory AML patients that take the treatment. Refractory AML is exactly what Curt is right now (refractory means "not in remission"). As we speak, Curt's pursuing the possibilty of getting access to that experimental round. He's also obtained his hospital records from Hopkins for the purpose of getting another opinion from MD Anderson in Houston. We'll see how these two avenues go.

It's been a long 8 months. 5 months total in the hospital. And the last 3.5 months in the hospital has especially taken it's toll on me physically. I need to put on about 25 lbs and get over this stomach issue and just essentially get my strength back.

I plan to stay at my sister's until whatever the next step is. But I do plan to come to VA on weekends more often this time. Visitors in PA are always welcome too. Please stay in touch with some phone calls to 703-598-4348 to let me know what's happening. Hope to talk to you soon.

While sleeping at my sister's after only 1 week there, on 1/20/2005 I developed severe pain in my left hip. After 14 oxycodone pain pills failed, I drove to Hopkins. I was demanding them to give me pain meds and let me go home. They said no way, you're being admitted.

The pain in my left hip left, but it moved to my right hip then it moved to my back. The entire time I was on extremely strong pain IV meds which I think ripped up my stomach lining.

His plan is this: stay un-infected and don't get sick between now and mid-late january, and then head in for transplant at hopkins. He'll be in the same part of the hospital, jsut a different ward. He *may* come home to arlington for a few days, up to a week, as a break between this round of chemo and the transplant. Stay tuned.

Remember, he still needs visitors! Anyone who'd like to go visit, i also have some things I need to send up ... email me back or call (301) 237-0196.

Many of you have asked what you can do for Curt. I have been talking to Curt, and one of the things he would like to have but feels he cannot afford right now is some alternative healing therapies. These therapies range from massages to other types of healing practices. They can serve to make him more comfortable and also to help heal his body.

If you would like to contribute to a fund to purchase some of these sessions for Curt, please let me know. We would like to give him something nice for the holidays.

You can email me at lisa.williford@verizon.net and let me know if you would like to contribute, or mail checks to: Lisa Williford, 1128 B North Stafford Street, Arlington VA 22201.

the xmas tree is decorated and lit waiting for goodies to be put under it... well around it, as it's only two feet tall. I will be up to see Curt this Saturday or Sunday if anyone would like me to put anything under the tree for you, get it to me this week. Mara and I will be spending xmas evening with Curt as well - if you want to get something for him but can't get it to anyone before this weekend, you'll have till xmas eve to get it to us."

You can drop gifts off at my house or contact Ben dirctly at bhale@panatech.com

1. My fevers range from 101 - 105 every day. I pretty much never am under 100, and definitely NEVER under 99. They last essentially all day. They are essentially completely dehabilitating about 18 hours out of the day where I do nothing but moan in bed. I seem to get a reprieve around 3-9pm give or take a few hours where I can feel normal (with fever) and do whatever.
2. They feel at this point it's a different type of fungal infection that is causing my issue than the one they originally diagnosed. They are giving me "all the guns" to stop the infection. I think they will give this enough time to ensure all options are provided enough time to work, maybe a week or more?
3. If the infection does not go away, which is a distinct possibility, then FLAM is out since prior infection is an exclusion criteria.
4. I could consider alternate chemos like Mylotarg, but the risk is the infection will kill me since chemo's COMPLETELY destroy my little immune system.
5. I'll stop there. Hopefully they figure out what this damn infection

(cut n pasted from my 11/19/04 email)The last 6 weeks of Curt's fight against Leukemia has been tough on everyone. And, so much has happened in the last two weeks that its been difficult to keep up with the updates, even for the closest of us to Curt. I asked Curt to write this update, since he knows best what he wants to say to people at this point in his fight.

---

Friends and family,

The last several weeks has been a whirlwind of information. Todd asked for this update some time ago but I honestly was not exactly sure what I wanted to say. I'm still not sure I know what to say, but I don't believe in candy coating the situation so here goes.

First I need to write the below timeline just to refresh my own mind on when this rollercoaster ride started.

Essentially what has happened is my disease is growing at a very aggressive rate. My white blood cells count (most leukemic cancer cells) reached 48,000 which is very high. They treated me with the 2nd round of chemo with the hope of getting rid of enough of the leukemic cancer cells to enable me to get to transplant in Seattle on schedule. Yes, Seattle did end up letting me back in the trial. This 2nd round of chemo did reduce the leukemia in my blood and it resolved the leukemia in both forearms which was actually quite severe. I was on self given morphine and Dilaudid (sp?) (stronger than morphine) to address the pain in both forearms, and it worked well. However, it hardly did anything to reduce the leukemia in my bone marrow. And the bone marrow and spleen is where essentially all my stem cells are that produce white blood cells, red blood cells, and platelets. AML causes these stem cells to be cancerous and essentially useless. This means I have:

Seattle and MD Anderson (the best in the US) both told me that my disease is far too out of control to expect any hope of a successful transplant unless I can reduce my blast % in my marrow (blasts = cancerous white blood cells). So transplant is out for now. Johns Hopkins agreed that my transplant option has no reasonable chance to work with my blasts at 80-90%+ in my marrow and growing. So this leaves the option to get chemo treatment to either

Hopkins discussed this option with me and ultimately feel I have a very unlikely chance to get cured with this path since

Hopkins summed up my options as this:

They ultimately don't see a chance for cure with any of these 4 options. This is probably influenced by the fact that the leukemia under my skin is an indicator that my disease will relapse at a rate of 70% +. So even if I get into remission after a transplant, it's highly likely my disease will come back. So Hopkins said the 3 medical options are all equally bad, with no preference for either of them. And they wanted to ensure that I understood that just going home and enjoying my remaining time is a very valid and acceptable option that they would support. And they left it up to me to choose which of the 4 options I want to pursue and said they would support any of them.

Option 4: Go home. SCREW THAT. That AIN'T happening.
Options 1&2: Transplant at Hopkins or Seattle. Seems no one have ever made it through transplant with a 80-90% blast count in the marrow. And I essentially will only get 1 shot at a transplant, so I don't like this option.

So Option 3 wins. I start round 3 chemo at Hopkins on 11/29. It's a phase 2 clinical trial called FLAM. It's 2 new drugs and 1 of the same drugs as used during round 1 of chemo. This round will last around 45 days and be significantly harder than round 1. They are getting 20-35% remission rates for refractory patients (patients who fail prior rounds of chemo). However, I think they deem my disease so refractory that my odds are not expected to be that good. BUT THERE IS A CHANCE IT WILL WORK. And If I get to remission or < 10% blasts, this also is sufficient to have a good shot during transplant. As the blast % goes up, the odds of transplant success go down. I will know in 2.5 weeks if this 3rd round of chemo worked or not. If not, then hopefully it will keep my disease in control long enough to recover for a 4th round of chemo with Myelotarg which has about a 28% remission rate.

So, there ends this rollercoaster ride of the past few weeks. Most of it actually happened in a couple of days. All of it came as news within the same week. My organs appear to be in solid shape to start the chemo. I have no infections now. So I'm physically ready for this round of chemo. I feel like I've been hit by a freight train emotionally this past 2 weeks. None of it has really sunk in. I'd be lying if I said "everything is fine emotionally". But with help from you all to keep my spirits up, make me laugh, take my mind off my medical situation if I ask that I don't want to talk about it, etc, I know I can make it through this round and more rounds if needed with your emotional support.

Things anyone can do to help these next 45+ days are:

So it's one step at a time from here on out. And it's going to be a road I'm on for a while to come. It's at least 8 more months to get to a transplant remission assuming this round of chemo works. If not, add on another 1-2 months for each round of chemo. This first step DOES have a chance, so let's hope for some good news. I am certainly due some good news. Either way, I'm in this fight for the long haul. This disease will eventually get tired and just give up!!

Lastly, I can say enough how much I appreciate everyone's help these past 5 months. I've been overwhelmed by the support. It's been the best experience of my life to see how kind people can be. It humbles me and hopefully will make me a better person once I'm through this crap.

Thank you,
Curt

1. I miss being in DC, but overall doing great.
2. I have an infection of my hickman, but hopefully that is going away with the antibiotics I'm taking. Infections are always a bit worrisome for me, but this one I think is manageable and fixable.
3. My head/focus/concentration/memory still don't feel 100%, but of course most of you would just say "Well, you were always like that." I've heard some people feel like this for years after chemo, so hopefully it goes away. Either way, it's not a major issue.
4. There is a study in Houston with 50% cure which I think I actually qualify for now. It only needs a 6/6 match which I already have. Challenge is, they say "I'm not medically qualified" to be there. I have no clue what this means. The doc is calling me back. I'm pretty sure it's just some technicality or misunderstanding of my condition. I feel good that it will be cleared up by Monday. If so, I plan to fly down there immediately. I would consider this over Seattle as an option. Note that BOTH the Seattle study (1 of the 2) and this MD Anderson (Houston) study are "non-myloblative", which means much loses does of chemo are used. I feel one of these 2 studies is the way to go.
5. I'm taking an amazing amount of alternative stuff. I'd rather not say what .. You'd think I'm nuts. Let's just say some of this stuff is "out there". :-)
6. I'm working now for DOL again part time. Good to get some cash to pay for all this alternative stuff.
7. I'm hoping I get a donor soon, since I really want to be OUT of the hospital on Xmas Day. This means basically I need a firmed up donor within about a month. I think the family may be planning some sort of Xmas vacation in Seattle in either case.

1. Unlike what my insurance plan explicitly states, they now say I have coverage to do unlimited searching for a donor because I'm going thru Seattle instead of Hopkins. Hopkins was not a "center of excellence", thus they only allowed for a 10 donor search. It's good the search is with Seattle right now.
2. They found a 10/10 match in the database, but they have not called or found out if he is available or willing.
3. I need a 10/10 match at the antigen level and I can only have 1 mismatch at the allele level in order to get me into the Hutch Protocol that has 50%+ cure rates. This looks promising, but it has not happened yet. My goal is to wait this out until I can get into this new protocol with the promising cure rates. I think Seattle is in line with my goals.

1. Had a bone marrow biopsy done today. It showed my disease is progressing, but slowly which is good.
2. Overall, my health is great barring the Leukemia.
3. I learned that Hopkins gave me a very strong dose of chemo in round one, much stronger and at different timing that the "standard induction cycle". This explains why they didn't do a 2nd round of chemo. Thus, it does appear that I am refractory (meaning I have a very resistive form of Leukemia which reduces my cure rate significantly).
4. I told Dr. Gore of Hopkins that Seattle is my very likely my choice for the transplant. He understood and agreed based on their higher cure rates.
5. Of the first 10 searches, 6 were mismatches, 1 is being typed, and the other 3 are unknown.
6. I learned that my insurance does not cover "investigational" therapies. I have to see if the clinical trial at Seattle is considering "investigational". Based on my quick review of my policy and talking to them, it does not look positive. So I may have some expenses coming here. I spoke with Seattle today and they said they run into this insurance snag all the time. And often they can get around it. Hopefully they can in my case.
7. I will be switching the donor search to Seattle once the first 10 searches are done (soon).
8. I've asked Gore (and will ask Seattle) to expedite the search to a 3 day match process instead of 2 weeks based on an "urgency" need. I'll see if it works.

The appointment went very well as I expected. The doctor is pretty laid back. A west coast thing I guess. Here's where I basically stand at the moment:

1. I need to get a bone marrow biopsy to see if my disease is stable or progressing. No one else recommended this until Seattle. A great idea since blood test can show no progression yet bone marrow tests show high progression.
2. I'm it's progressing, then I need to proceed to a bone marrow transplant asap. Seattle also agrees I have a good chance of a 10/10 match. In fact, Seattle said they found 2 people from the Netherlands and 1 from Great Britain who have my same unusual antigens in their quick search they did for me.
3. If it's NOT progressing, then I can continue to hold out and wait to get the protocol here in Seattle which has a 50% cure rate for relapsed/refractory Leukemia patients. Compare this to the standard MUD cure rate of 20%. Challenge is I likely cannot get into the study until November since they have limited lead lined rooms which can handle this protocol (radioactive iodine I 131 which gets administered in the room I sleep in). If I'm NOT refractory, then my odds go up even further with this protocol, maybe 60-70% or more. Additionally, they have a "mini-transplant version" which shows almost as high results and is less toxic.

So, I want to come to Seattle barring better news from Houston or Minnesota. Challenge is it's hard to last until November with my disease without my blast counts getting out of control OR me getting sick and risking not being able to get the transplant. I could also get another induction chemo if my blasts start to rise and this would have maybe a 40-50% remission chance and even if it didn't' work it would buy me time for the Seattle option.

My gut says I'm going to find a 10/10 donor fairly quickly. And all the docs ALL recommend getting the transplant ASAP if that's the case. Challenge is, the cure rate on all these other protocols is less. Boston protocol is between 20-50% depending on how refractory I really am, which no one knows. So my gut says I'll have to make the choice to ignore the strong Seattle cure rate out of fear (the doctors fear) that waiting risks a) me getting sick enough that I can't get ANY transplant or b) my blasts will get so out of control that I can't get a transplant or c) they use chemo to control my blasts which puts me in the greatest risk of getting sick and once again risking the transplant never happening. So my gut says I'll need to make this decision of ignoring the high Seattle cure rate out of these fears. A hard decision to make, but one I'll have to do since all of them seem to recommend it.

As of now, Boston would be my choice for an immediate transplant. But I have not asked Seattle what other protocols they have for me which are immediately open. I'll find this out tomorrow.

It went extremely well. I spoke with Dr. Joseph Antin, the head of the Transplant Center here. Their opinions here vastly contradict with Hopkins. And they give me stronger odds, up to 50% cure rate. This is based upon the theory I may NOT be refractory (e.g. I may NOT have a highly resistive form of leukemia). If I DO, then I'm refractory and my odds DO go down to 20%. Really, he just don't know at this point and he thinks it's erroneous to assume I'm refractory. He said in Boston they would have done a 2nd round of chemo immediately on day 14 when I failed the first bone marrow test. And I would have had a 50% chance of remission. And they said the 2 months post transplant hospitalization is only 1 visit per week, not daily.

So I'll summarize his recommendations:

1st option: Do a FAST MUD search of 2-6 weeks. He feels I have a very good chance of a 10/10 quickly. And they do quicker searches than Hopkins seems to be able to do. Then do a MUD transplant with the following protocol http://www.bloodjournal.org/cgi/content/abstract/102/5/1601?ck=nck . He predicts 50% cure rate, but I think he's being optimistic that I'm not refractory. Realty falls at either 50% or 20%, we just don't know if I'm truly refractory or not.

2nd option: If the search takes longer than he likes, then he'd do a 2nd round of chemo to attempt remission as a preventative measure to buy me time. I'm not sure I totally understand the theory here since as long as my white counts remain low (I'm at 700 right now which is really low), then who cares?

3rd option: PKC412 study on the FLT3 mutation issue which about 1/3 of all AML patients suffer from.

I visit Seattle on Thursday. I'll see what they say.

There are, unfortunately, some challenges still ahead. Apparently curt has a somewhat rare chromasonal DNA structure, which will make finding a match suitable for transplant more difficult. And there may be some insurance issues to tackle ... apparently his insurance company covers the transplant surgery but not the search to find a transplant donor? More info to come. Its the "15XX and 07XX antigen in the "C" region of the chromosome," if any of you are DNA scientists...

Visiting: Curt encourages visitors! Even in Hopkins. Just remember, he's pretty susceptible to illness, so like before, if you've been ill, or around someone who's been ill, do NOT visit.

• email: curt@rettke.org
• aol IM: curtrettke1962
• cell phone: (703) 598-4348

The medical designation for his exact type of cancer is "Acute Myelogenous Leukemia" or "Acute Myeloid Leukemia." This essentially means his leukemia is rapidly progressing, and is isolated to the blood cells (as opposed to his Lymph nodes). I'm not sure of his subtype. Leukemia isn't an inherited disease, or something that you bring upon yourself through damaging behaviors (like say, lung cancer). There's no known cause, but the cure is well known and well practiced.

For more information, here are informational sites:

The National Bone marrow Program has a local contact who can answer any/all questions. Contact Mary Hope, 703-476-1471 about Marrow Drives and Donor Questions.

Here's a list of places you can call to get registered for the national database:

Keep him in your prayers. Please forward along to anyone you think may be concerned. Thanks, Todd