Tuesday April 24, 01:
Quick Update - FANTASTIC NEWS!
Sorry for taking so long to share this. Sunday, April 20th, Chris finally came home, after spending about a week shy of three months in the hospital, and all but 3 weeks of year 2001 in the hospital. But that's not really the good news. Chris's marrow finally started healing about 10 days ago after over 2 months of being leveled out at near zero levels. Unbelievably his counts are all up to near normal levels. RBC: 3.5, WBC: 3.1 PLT: 99, thought they gave us someone else's counts when I read them yesterday. That's not really the good news either. They did a BMA (Bone Marrow Aspiration - biopsy) Thurday and an LP (Lumbar Puncture) Friday. and both came back clean of Blast (leukemia) cells. Still waiting for official lab report of the BMA , but Dr. Rintels said it looked good and the lab has always confirmed his inspections. Some of the marrow has been sent out for PCR testing but we won't get those results for another couple of weeks. What this all means is that we're pretty sure that we have a clinical remission and a shot at a molecular remission (PCR-negative). What that means, is that we have a good shot of doing an auto-BMT (Bone Marrow Transplant), which is good news because the unrelated donor search results is not doing so great. The 25 candidate 5/6 matches have got knocked down to 6 that have not responded and been tested yet. The other 19 are all either not now available or have been tested and are not candidate 5/6 matches anymore. We have not yet started contacting the 17 4/4s to see if there is any candidate 5/6s or even 6/6s amongst them. Our search coordinator is very pessimistic about there being any candidates amongst them. She has done a probability study and came up with a less than 1% chance of even getting even a 5/6 from that group let alone a 6/6. It turns out that Chris has two very rare antigens (one of the DRs and an A I believe). I think that the probability came up much less than 1% , but I don't have the actual figures. We will be checking the 17 4/4s but with Chris's great recent progress we have bought some time. We will be going up to NEMC (New England Medical Center) next Monday to get second opinions and information about their transplant facilities vs. Dana-Farber. We also have to go up to Dana-Farber and talk more with them. There are insurance issues that may make it more favorable to go to NEMC instead of D-F, but we have to talk more with both of them to get opinions and evaluate the facilities.
So how is Chris actually doing? He's still pretty much beat from all the treatment and the long hospital stay. But I think he's slowly coming back to us. He's walking more each day and talking a little more, and even has an occasional smile, but mostly he just has a blank stare off into space. I can only compare it to the "thousand mile stare" that used to be associated with Viet-Nam Vets returning back to the states. Kind of makes sense, Chris has been through more than any of us vets had had to go through in Nam. Doc said he's giving Chris a week off, which I think means he wants to start some sort of consolidation treatment soon (more chemo) . There's some question as to if he should get some radiation treatments along with it . Will try and get more input on that from NEMC and D-F, He will have to get the radiation either now or just before a BMT, but right now we are not sure of the best time. Another thing I just realized that I'm not sure about is if he should get a marrow harvest done before or after the consolidation. We are all in agreement that he should have a harvest (as soon as we confirm PCR-negative), in case we do have to do an auto-BMT. We will probably still wait to see if there is a 5/6 or even 6/6 but know that we should do the harvest just in case. But I'm concerned that if they do consolidation treatment first that his counts may not come back fast enough to do it. Got to run that one by the docs. Think I will push to hold off consolidation until we get PCR results and if they are negative to do the harvest first. We already missed two opportunities to do it before Chris's 2 relapses- don't want to blow it again, especially since a donor match seems unlikely.
Okay, so this wasn't that quick of an update. I'm just really using this to collect some of my thoughts. I will try and answer some of what should seem like obvious questions from people not completely up on all this stuff. prompted by questions asked by co-workers.
1) If Chris is in remission why do anything? ANSW: Remission does not mean cured (although the possibility is there). Remission only means that there is no detectable level of Leukemia. Chris has been in remission twice, in fact molecular remission. The fact that he relapsed twice (3 times if you count the CNS relapse), combined with the fact that each successive remission has been harder to achieve, means that we can not even hope that a remission means cured. Typically AML patients require a BMT for long term remission. The only reason we never looked at a BMT before is that for Chris's particular type of AML , which is APL, that the success rates of the alternate treatments, only available to APL patients, was very high. Chris just fell into the short end of the stats for both treatments (ATRA for initial remission, and Arsenic for relapse from remission. That put him back into the standard AML treatments which almost always requires a BMT. Actually Arsenic treatments are normally followed up by a BMT , but because of Chris's Heart condition and the fact that the majority of the researchers felt that Arsenic should work without a BMT (It was just typically done for insurance) , we chose not to go that route then. Bad decision on hindsight. Funny thing (bad choice of words) is, that with the numerous rounds of chemo, ATRA, and Arsenic, Chris's heart has not shown any wear and tear, and latest recommendations is that his heart should not be a factor in any further treatments. I'm sure all the chemo has had some effect on his heart but it is a slow process and will not show up for years. They have already said , before the Leukemia, that he will probably need some valve work before he's 40, so maybe with all the chemo it will be closer to 30. We can deal with that later. First we have to worry about getting to that age.
2) Auto-BMT vs. Allo-BMT: Obvious question is, if you have to do a BMT, which means you have a possibility of undetectable Leukemia cells still in the marrow, What good is it giving it back to you? Good question! Not sure if I have the best answer, think its two things. 1) they can treat the marrow once its drawn to try and further kill any possible leukemia cells in it. and 2) the quantity of marrow drawn is a small percentage of the total marrow, so you may get a sample that are void of Leukemia. This raises another related question., that is, does the high level chemo and radiation kill all the leukemia in the marrow before injecting the harvested marrow? I'm afraid I know the answer to that one, and it is, no. This relates to the next question I will bring up (mini vs. full BMTs) . The good thing about an Auto-BMT is that you don't get Graft vs. Host disease. (the new marrow antigens don't try to attack the body cells as foreign bodies) , The bad thing about an Auto-BMT is also that you don't get Graft vs. Host disease. Because Graft vs. Host also means Graft vs. Leukemia. Recent studies indicate that the reason that allo-BMTs have worked all these years is not that the Leukemia was wiped out by the high level chemo and radiation but because the donors marrow killed of the remaining leukemia population, seeing it as foreign bodies. It may be, that the successful cases of auto-BMTs were only successful because the treatments that achieved remission had actually killed the leukemia in the first place (which means that a transplant wasn't required) or possibly that in some instances the pre-BMT had killed any few Leukemia cells. This is all pretty much layman's conjecture on my part. So, though its great news that it looks like we will probably be able to do an-Auto BMT, I am still upset that its looking more and more like an Allo will not be possible. .
I was going to add some more tech stuff here (full BMT vs. mini-BMT) and some facts about how dangerous auto, full-Allos, and mini-Allos are because I think most people have no idea how dangerous and traumatic any of them are, but I have ran out of steam.
New Subject: Tonight, as I was typing all this in, Chris and his Mom attended a fundraiser held for Chris at the Karaoke Club that Chris and his friends used to frequent. I feel like a heel because I didn't attend. Deb just got home and called me and it sounded like it was a great time. Most of Chris's friends showed up, as well as a lot of the nursing staff from the clinic and Chris's hospital floor and some of his fellow leukemia patient friends from the clinic, and unbelievably our Doc (Peter Rintels) even showed up. That knocked me over when Deb said that Peter showed up. He never gets away from the clinic and hospital. Now, I'm really sorry I missed it. I guess Chris had a good time, Deb said he even managed a few smiles, though it was tough for him to sit there that long.
Sorry for the long update. Like I said it was more for my benefit than anyone else's. Just trying to get some of my thoughts straight.
April 17, 01:
Quick Update - Good news for a change.
I've been negligent in updates over the last 2-3 weeks. I will not even try to fill in all the details of what has been going on but will just give todays status In a word, things are going Great! At least relatively. Over the last 1 1/2 weeks Chris's counts have steadily climbed to way above what they were in early Feb. Still low but above neutropenic, and no transfusions required for almost a week now. I suspect he will actually be able to come home by the weekend (after almost 3 months in the hospital). They will be doing a BMA tomorrow and his doc is very optimistic that we have a clinical remission. No great progress on the match search yet - 2 non-molecular DR matches results of the 5/6s so far and 2 samples just received but not done typing yet - more coming. We have a lot of stuff going on on the side regarding search stuff, but I won't go into it now. Chris has got his appetite back, albeit not much variety - just Chief-Boy-A-Dee spaghetti, butterscotch pudding, and Boost. Glad he finally got a taste for Boost. His daily walks are getting longer each day. We are not sure yet but Chris will probably have to do some consolidation chemo, since we dont yet have a good allo match. We haven't sat down and gone into details of our next plane of attack yet, it depends on the outcome of the BMA and a probably a spinal check.
Mar 24, 01:
More miscommunications. Talked to a different search coordinator from D-F last Monday. This is the head coordinator and the one that will be handling Chris. Yes there are seventeen 4/4 matches but there are twenty-five 5/6 matches. Says that the chance of doing better than 5/6 with the 4/4's is too remote to consider testing them, especially since we have twenty-five candidate 5/6s. But they will not contact them for further testing till we identify the exact type of Chris's DR antigens. His counts are too low to retest him (less than 0.1 now), but there was some frozen DNA of his still at RI blood center. They (D-F) have sent for that and also sent three kits for Deb, I and Chris's Sister to get retyped at D-F for full level typing. They should be able to figure out Chris's DNA typing from them. I drove up to Boston with the threesets of blood samples Wednesday. They should have results by next Wednesday. This weeks bad news is that the coordinator does not think Chris's insurance will pay for the further testing of the twenty-five candidates ( at $800 each). Says she has never had any luck getting RI or Conn. Insurance to pay for candidate match testing. We'll see about that!. That does not mean they won't get tested just means that some creative financing and negotiating is required. We have to wait till we get a better handle on Chris's typing before we can even start that process though. Our newest concern with Chris is his mentality. Over the past week he started slurring words, misusing words and gotten into one word sentence communications that is difficult to understand. The neurologists have seen him and they have altered some of his meds to try and figure out what is going on. I think there's been a slight sign of improvement over the last two days though. His 24th Birthday was this past Tuesday and a bunch of his friends went to visit him, but I think he barely realized it. His counts are still essentially zero, but per plan aren't expected to start coming up for a few more days yet. Still too soon to check for effectiveness of the chemo. He still cant hold down any food and vomits about 100 times a day no matter what anti-nausea meds he gets. They started him on IV nutrients several days ago.
Mar 16, 01:
Good news - bad news - good news. Welcome to the Clements family emotional roller coaster. Dont blink or you'll miss something. Things are better than the last post, maybe even better than the one previous to it, too early to tell.
I called one of the search coordinators at D-F today, and finally spoke with someone who seems to know what she is doing. As far as she could tell there never was a search done for Chris. The other searcher, who was out Friday, may have done one but there was nothing in Chris's file. She said she would check with Stone and then start one immediately, if he ordered it. Being Friday, I'm thinking, "Great, so this won't get resolved till next week?" But she assured me she'd get back to me within in an hour. "Sure!", I say skeptically. About half an hour later, she called back. She spoke with Stone, and yes a search was ordered but some how never done. She started the search and already had the match results from the BMDW (that's the one that includes all the worldwide registries). Turns out there are seventeen 4/4 matches and at least one 5/6. She said she would start the process of getting the 4/4 donors further tested for DR matches. (4/4 means the two A antigens and the two B antigens matched but that the donors were never tested for the DR antigens.) She had to check first to make sure Chris's insurance would pay for the testing, but said she would call me right back if there was any resistance so I could arrange to pay it myself. There is one snag though. According to Chris's Antigen results, his DR typing was only tested at low level DNA typing. Each of his DR types actually breaks down into several different type classes, and one of his types (DRB1*04) break down into 40 subtypes (splits?), the other (DRB1*07) only breaks down into 4 alleles. This is way beyond me now but I think some of the splits are a lot more common than others and some may be compatible with each other. The problem is, is that Chris's counts may be too low for him to get retyped now. The search coordinator said that his white counts should be above 0.2 to get typed. His WBC was running about 0.2 - 0.3 last week but has dropped to 0.1 since getting this last round of chemo. We will probably have to wait a while for them to come up some to do the retesting. That shouldn't really hold anything up because it will probably take a while to get all the 4/4 candidates further tested. Not really sure how all that works but will I will try to find out Monday. The other good news is that the Doc does think that there is some indication that this chemo worked. Too early to really tell much though
LATE Mar 15, 01:
I'm afraid I have to make a correction to my last post. I STILL CAN'T BELIEVE THIS IS HAPPENING!!!
It turns out that the HLA Marrow match report that Dana-Farber sent to our Doc are wrong. I worked late tonight to make up some lost time while Debi went to the hospital. Our Doc came by with the match results that D-F had sent. She gave me the antigen numbers over the phone, but they didn't make sense, none of them seemed to match the numbers I had for Chris, so I had her fax them to me. I realized then, that there was a major screw up. Deb figured I was reading them wrong so I faxed Chris's HLA types back to the hospital for our Doc to look at. Doc agreed, sure enough they sent us the wrong results. Rintells was almost as furious as I was and said he would get to the bottom of it tomorrow with D-F. I knew I would too anyway because I had called them today already and ran into roadblocks about trying to get copies of the report (before I had seen it). I then realized I had a pager number for Dr. Stone (the head hemo doc we had met with twice at D-F) and I then had him paged. He was quick to return the page and seemed shocked that they sent the wrong results but also seemed to recall that there were no matched donors for Chris. He gave me the names of the search coordinators so I could call them directly tomorrow, That was what I was trying to find out when I called D-F earlier today, and was only told that Stone would get back to me. He said he never got that message. I cannot put down in typing how furious I am right now. I can't believe that this sort of incompetence could exist in people that are dealing with issues that lives depend on. If it turns out that Chris does have any candidate matches, I am strongly going to consider sending him elsewhere for the transplant. Some research has shown that D-F is more experienced at unmatched unrelated transplants trhen our second choice but has still not done that many. It turns out (at least by my research) that NEMC, our second choice in Boston, may not have done any. I'm now thinking the Hutch in Seattle as a first choice (most experienced) or Sloan-Kitteran in NY. They may not be as convenient and I'm not sure if there are any insurance issues. First step is to see if there are any matches out there. One thing I did learn from the D-F report is that they did do a worldwide search, at least for the patient that they sent the wrong results of. My hope now is the info that Stone recalled when I paged him is not from a full search.
Mar, 015:
Things have been too crazy to take time to update this thing lately. I will just jot down a few things now before I forget them.
Since my last post, Chris had to have his gall-bladder removed (March 02). It was kind of risky with his counts still being down, but it worked out okay, and had immediate results as far as eliminating the pains he was getting from it. They did another bone aspiration while he was out during the operation and it came back positive. They have also done another LP since then and that also came back positive. So, Chris is back into both marrow and CNS relapse. Also his counts never really came back from the chemo that he received early February and have leveled off at low counts. He started a new round of chemo on March 10th, 3 days of ARA-C and two days of Etopiside. The hope is that either (1) This round will get him back into remission and his counts will come back (in which case we may be able to still do an auto-transplant, or (2) He gets into remission but if his counts don't return that they can keep him alive on transfusions long enough to do some sort of partial match unrelated donor. Also somewhere in there they blew Chris's Hickman Catheter out and he had to get a new one installed. We just received word yesterday that there are three candidate 5/6 match donors in the registry. I am still hoping that they haven't checked the world registry (BMDW) yet and that there may be a 6/6 there. But we are overjoyed that at least we are still in the fight with three candidate 5/6 matches. We still have to get Chris in remission and hope that either his counts come up on their own or that we can keep pumping blood and platelets in him long enough for them to confirm the marrow matches and do a marrow harvest and transfusion.
Feb 24, 01:
Just a quick Update:
Chris is still in the RI hospital, Guess that is since Feb 02 except for the one day he was out on Feb 9th. His counts are still down and his temp is still going up and down, fluctuating between normal and 101+ the last few days. He is starting to eat some now but isn't keeping much down. He started on a new med last week "Atragene". It is really just an IV form of the ATRA he used before but isn't FDA approved yet. Using under a compassionate exception through the NCI. Some good news is that in order to start the Atragene, Chris had to have a bone aspiration, and the results came back "NEGATIVE" no sign of leukemia blasts. They won't be able to check his CNS (spinal tap) until his counts come up some. They should be starting to come up by now but there are no signs of recovery yet. He's still getting whole blood and platelets to keep his counts up. He's still zonked out most of the time but has gotten out of bed for a couple slow laps around the hall. Oh yea he has a touch of pneumonia now too. Confirmed by x-rays and C-scans last night. Don't know if they will adjust meds to take care of it or rely on the same antibiotics he's been getting to fight it. Haven't seen the Doc since results of C-scan came back yet.
Feb 16, 01:
News since last Update:
Chris stayed in the hospital Feb 2d - Feb 8th and received 3-4 days of the Chemo. It was fairly uneventful, no immediate side effects. He was still feeling pretty good when he came home Thursday night. The following day, Friday, he even went to a friend's wedding. His counts hadn't really started going down yet and the doc said it would be okay. Friday, just before the wedding, he was complaining of a bad sour throat. I told him he should go straight to the clinic and have it checked out, but of course he didn't listen and he went to the wedding anyway. Late that night we got the call from him saying he was getting sharp pains in his stomach. We called his doc and he went straight to the emergency room at the RI hospital. He finally got admitted back into the hospital the next morning Feb 10th. For the next few days he had numerous C-Scans and X-rays, but they couldn't find any source of the stomach pain, which was getting increasingly worse each day. By Tues, they had decided it was some kind of bowel obstruction and the surgeons wanted to go in and cut a section out. But with Chris's counts now dropping it was decided to hold off as long as possible and see if they could free it with medicine. Throughout all this Chris had been vomiting up large quantities of dark green fluid. There was talk about putting a suction tube to his stomach through his nose to drain the fluid, but we also held off on that because of the low counts. By Weds after nothing seemed to work, Debi convinced them to try some other form of oral medicine that she knew about to try and free it (cant recall the name). Early Thursday it finally worked and the damn broke. Never thought I'd get that excited about my son taking a crap! Since then the pain has been diminishing and the swollen stomach has mostly gone down but Chris is continuing to run high temps. Not good with his counts down. He's presently "on about every antibiotic known to man" as one of the nurses said yesterday. Hopefully they can keep any infections down with the meds and keep pumping in blood and platelets until Chris's counts start rising again. We won't know if the Chemo did its job of getting Chris back into remission for another week or so. Got to wait for his counts to get back up before doing a marrow aspiration.
Feb 03, 01 - Sat:
It just keeps getting worse. I still remember Debi saying on New Years Eve. "This is going to be a great year." Things went bad two days later and kept getting worse!
This past Monday (01/29), we all went to Danna-Farber in Boston to consult with Dr Stone. The plan after that day was to keep doing the LP chemo until the CNS was clear than to shoot to Boston for a Marrow harvest, come home to rest for a week, then go back to Boston for auto-BMT. Found out that day that an allo-BMT or a Mini-MUD-BMT is not possible because there are no candidate donors in national registry. That was okay, at that time I didn't want Chris to take the risk of an allo anyway. Since Monday, I never even saw Chris until Friday. He was hanging out at a friend's house whose parents went to Jamaica for a week. Sounds like his whole Karaoke group was there for the week. That's fine, they went with him for his LP Tues and his BM-biopsy Thurs and he was with good friends. Probably needed a break from mom and dad. Friday at about 2:30 I get the call from Debi. Rintells (our hemo doc) found Leukemia cells in marrow. Everything changes now. Chris is to be admitted to the hospital. I rush up there (Debi was on her way to work when she got the call and couldn't get out of it). I went to the clinic - but no Chris. Turns out that a conspiracy between clinic staff and Chris's Friends allowed him to escape and go out to Chili's for a good meal while waiting for a room to open. Good for them! Meanwhile I had a good "heart-to-heart" with Rintells who seemed even more upset than I did over this news. He spent all night rummaging through medical articles and making calls to figure out the next step. Chris did get admitted Friday (was that really only yesterday) and started the new protocol of chemo (Idarubicin) along with ATRA (All-Trans Retinoic Acid. ATRA is the stuff Chris first got remission in with two+ years ago. He relapsed while on maintenance with it, but the Docs think maybe since it's been over a year his system may still respond to it. Doc was talking about using other new forms of retinoids (one from a Japanese study) but I guess they weren't available. I got this awful impression that they are grasping now.
Anyway, the new plan, as I understand it, is to first get Chris back into marrow and CNS remission. The Idarubicin is strong enough to get to CNS also (maybe if we weren't so concerned bout Chris's heart 2 years ago we never would have seen the CNS relapse, but that was when we where looking at the 85% success rate with ATRA), then go for the auto-transplant. My gut feeling is that we really need an allo-transplant at this point, regardless of cardiac effects, but unfortunately that's not even an option with no matches. Rintells is still going to look further into that. Stone said "no matches" but didn't say if he meant no 4/4, 6/6, 5/6 or what. Chris, as usual, is taking this all in better then his mom and me. At least as far as we can tell. I suspect that he thinks the same as us. I'm betting he holds his tears back till we leave the hospital just as we do.
Jan 23, 01 - Tues:
