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3/30/08: Matt's annual biopsy is scheduled for Tuesday. Hopefully it will go better than last year. We'll post results when we have them.
6/9/07: Matt had his biopsy in March. The biopsy was more difficult than usual and he has had some residual pain in his back and leg surrounding the biopsy site. Dr. Larson thinks some blood and marrow clumped between the bone and the surrounding membrane and will eventually work itself out. Cytogenetics and PCR were both negative.
1/4/07: Matt saw Dr. Larson today and all of Matt's blood counts are normal. He scheduled a biopsy in March and Dr. Larson plans to do cytogenetics and molecular on the biopsy. Matt will keep having a biopsy every March and FISH every September with PB counts every 3 months.
Dr. Larson mentioned that the 5 year results from the IRIS study (Phase III Gleevec trials) were published in December in NEJM. I have added that article to the Gleevec section in CML Info. It reports that for patients on Gleevec with 3 log reduction in Ph+ (which Matt has) the estimated progression-free survival probability at 5 years is 100%, with none of the 139 patients from the study in that group having progressed. Great news!
I have also included two other NEJM articles from 2006 reporting the results of the Phase I dose escalation studies for the next generation CML drugs, Nilotinib and Dasatinib, to the Gleevec section in CML Info. They report manageable side effects with excellent patient response even at the low doses used in the study.
9/21/06: Matt has started seeing Dr. Larson regularly beginning with his fall appointment. The UC Hospital does their FISH tests on site and is right near our offices on campus, so it's very convenient. Dr. Larson does not do regular PCR tests, so Matt will just be having FISH tests now with an annual biopsy. His FISH test from this month was negative and he is scheduled for a biopsy in the spring. Dr. Larson had brought up the idea of reducing Matt's dose to 400 mg, but ultimately felt that since the risk is unknown there is no reason to make a change.
5/3/06: We got the results from Matt's FISH and PCR tests. FISH is still negative and PCR has gone down to 0.002. So it is likely that the recent rise was a fluctuation. Given the decrease, Dr. Kahn doesn't think it's necessary to have another test in June, so the next one will probably be in September.
4/19/06: Matt is going today to get blood drawn for a PCR test. It will probably take a couple of weeks to get the results.
4/4/06: Matt met with Dr. Larson at University of Chicago Hospitals yesterday. Unfortunately Matt's appointment with Dr. Larson got started later than scheduled which foiled our plan of having Jack nap through the appointment allowing me to listen in. Dr. Larson has rather different thoughts on CML monitoring than we've heard from other doctors and read in papers. He does not believe that PCR testing is particularly valuable; he says that any result less than 0.01 is potentially a fluctuation from zero. He would not recommend changing treatments until the PCR value reaches 0.1 -- a factor of four higher than Matt's current test results. At that value a FISH test would probably also show a positive result, so Dr. Larson prefers to do FISH tests only. He pointed out that Matt's PCR tests have been performed at a lab in California and that damage to the sample from transport can affect results. The protocol he follows for his patients is CBCs every three months, FISH tests every six months, and BMB every year. His lab does FISH tests locally on 400 cells with no false positive rate. He feels that Matt's marrow is not actually empty; he thinks a sample could probably be obtained by trying a different biopsy site.
Dr. Larson is not particularly concerned by Matt's current PCR results, but in the case of a relapse he would recommend getting into one of the new drug trials. He feels that the two new drugs (BMS and Novartis) are comparable so the choice would be made based on what trial is open at the time. Right now one must be 25% Ph+ in order to enter a trial. He views transplant as a last resort. He is not concerned by any of Matt's side effects and even suggested that it might be possible to scale back to 400 mg of Gleevec to reduce side effects.
We are glad to hear that Dr. Larson feels that Matt's recent results are a fluctuation, but we are frustrated by all the conflicting information we have. We will need to talk with Dr. Kahn before settling on a final plan, but we are thinking that we will go ahead with PCR tests in April and June. After that the trend (or the fluctuation) will be much more clear. If it is a fluctuation and we continue monitoring, we are considering switching to Dr. Larson for Matt's September biopsy as his office is right on campus and their FISH tests are more precise.
3/31/06: I added some recent articles to the treatment strategy section in CML Info.
3/29/06: We exchanged emails with Dr. Forman about Matt's latest results. He says that he doesn't advise making any change until he sees a factor of ten increase -- right now Matt's levels have increased by a factor of four if you use the May 2004 result of 0.006 as a baseline. Dr. Forman made the point that these levels are still on the low end so we have time to be absolutely sure we're seeing a real trend before doing anything drastic. He recommends increasing the frequency of Matt's PCR tests so we don't have to wait so long to make a change if one is needed. We will talk to Dr. Larson on Monday and see if he agrees.

3/28/06: Here is a full history of Matt's test results.

Test Date	Test Type	Result
3/03	BMB	20/20 cells Ph+ (diagnosis)
6/03	BMB	4/20 cells Ph+
9/03	FISH	borderline positive (4/300)
9/03	PCR qual (1/10000)	negative
12/03	BMB	no cytogenetics possible
12/03	PCR qual (1/10000)	weakly positive
3/04	BMA	0/13 cells Ph+
3/04	PCR qual (1/10000)	positive
5/04	QN PCR (1/100000)	0.006
6/04	QN PCR (1/100000)	negative
6/04	FISH	negative
9/04	BMB	no cytogenetics possible
9/04	FISH	negative
12/04	FISH	negative
3/05	FISH	negative
6/05	FISH	negative
9/05	BMB	0/5 cells Ph+
12/05	QN PCR (1/100000)	0.013
3/06	QN PCR (1/100000)	0.025

3/28/06: We got the result of the PCR test yesterday. The number is 0.025 -- it has doubled since December. So it seems that the numbers really are increasing -- we don't feel that this can be explained by a fluctuation. We have exchanged emails with Dr. Forman and passed on all of Matt's test results. We are hoping to talk on the phone with Dr. Forman soon. We have also made an appointment for a consultation with Dr. Larson at the University of Chicago Hospitals. He is a CML expert that Dr. Forman has recommended in the past. The appointment is on Monday, April 3.
3/26/06: Matt had his 3 month PCR early in March. On Friday we got a call from Dr. Kahn saying that his PCR has gone up again. Dr. Kahn is concerned -- he wants us to consult with Dr. Forman and consider the possibility of increasing his dosage or even switching to a new medicine. The new medications have looked good in trials but are still very new, so this would be a very serious step. We don't have a copy of the test result yet so we don't even know how much Matt's PCR has gone up. The current thinking is that when PCR values are less than 1000x reduced from full disease load and/or are increasing it is time to consider different treatments. Obviously we are worried, but we don't have all the information yet. We will try to get a phone consultation with Dr. Forman as soon as possible. I'll update as soon as we know more.
1/10/06: Matt went in for his 3 month testing in December. Dr. Kahn wanted to do a PCR test this time. He has always pushed for just FISH in the past. We don't know why this time was different -- perhaps the protocol is changing. We just got the results when we got back from California. It was a quantitative PCR test and the value was 0.013. This is higher than any of Matt's previous PCR test results, but not so much higher that it's likely to be anything more than a fluctuation. The test will be repeated in March.
10/8/05: We got the results of Matt's cytogentics. Unfortunately the lab was only able to analyze 5 cells. They were all Ph negative, which is good news, but the FISH test (usually done on 200+ cells) was not possible. We haven't made much progress in our research on this marrow hypocellularity. Dr. Kahn does not think it poses a danger, but we would like to know more about what could be causing it and what possible problems there are. I'll post again when we find out more.
9/16/05: Frustrating news from Dr. Kahn -- Matt's marrow is still quite "empty." The sample appeared good during the biopsy but the lab said that the material was mostly fat and that it was only 3% stem cells. A normal value for someone Matt's age would be 40%. There may be enough cells to get cytogentics (and possibly FISH) testing done, but it is still a bit troubling to have Matt's marrow in an unusual condition. Dr. Kahn says it doesn't pose any danger, but he doesn't understand what's causing it. We are doing a little of our own research and will probably check in with Dr. Forman to get his perspective. We will get the cytogenetics results in a week or two.
9/9/05: Matt's biopsy on Wednesday went well. I waited outside with Jack -- we thought it would be upsesetting for him and distracting for the doctor for him to be in the room -- so I can only report what Matt told me. He said that Dr. Kahn used more anesthesia than usual, so he didn't feel a thing until the needle was already in the bone. That made it more startling when he did feel something, so he said he was more jumpy during this biopsy than usual, but it was not very painful. Dr. Kahn was pleased with the sample and was sure that Matt's marrow had recovered enough to get a FISH test done on the marrow so he didn't even order a blood draw for a peripheral blood FISH. Matt was stiff and sore for a while afterwards, but seems to be moving normally now. As ususal we'll have the results of the FISH test in a few weeks.
9/5/05: Matt's annual bone marrow biopsy is Wednesday. We've been frustrated in the past that Dr. Kahn has been unable to get a good sample to verify that Matt's marrow is also negative -- all the test results we have are from peripheral blood. We are expecting that Matt's marrow has recovered in the past year and it should be possible to get a good aspirate. Matt is not looking forward to the biopsy experience -- even though his biopsies are not usually very painful, they are very uncomfortable and not fun.
6/17/05: Matt's FISH test was negative -- very good news. Yesterday we attended a 5k race that raises money for leukemia research. I ran (slowly) and Jack wore a little t-shirt that said "My Daddy is living with CML." We have done this race several times in the past but it was even more fun to share it with Jack.
6/8/05: Matt had his quarterly appointment with Dr. Kahn today. His CBC was normal and Dr. Kahn was very pleased. Matt is not very excited that his leg rash is spreading to his arms and torso, but other than that (and the usual side-effects) he is feeling very well. He had blood drawn for a FISH -- as usual we'll have the results in a few weeks. His next biopsy is scheduled for September.
4/5/05: Matt's FISH test was negative and all his blood counts were normal. Everything continues to go well!
3/8/05: Matt had an appointment with Dr. Kahn today. All his CBC counts are normal. Blood was drawn for a peripheral blood FISH test. Dr. Kahn says that the next biopsy will be in September (a year after Matt's last biopsy) as long as his FISH tests keep coming back negative. We will have the FISH results in a few weeks.
3/2/05: My brother-in-law, Teddy, joined the National Marrow Donor Program registry when Matt was diagnosed. He turned out to be a match for a one year old baby! He donated marrow on February 18. The procedure was not difficult and Teddy is feeling fine. Here is a link to Teddy's webpage where there's a little bit about his experience. We haven't heard any news yet about how the baby is doing but we pray the transplant will be successful. We are very proud of Teddy and glad that Matt's CML led indirectly to this good thing.
2/1/05: I'm sorry I haven't updated the page in a while. I guess it's good news that we are focusing on things other than CML! Matt did have a peripheral blood FISH test in December which came back negative, so everything continues to look good. He will have a biopsy in March. Side effects continue to fluctuate but are usually fairly mild.
10/3/04: We got the results of Matt's peripheral blood FISH test. It measured 3/300 Ph+ cells. This is a negative result because it is within the false positive rate of the test. So everything seems to be going fine. We haven't received the results of the biopsy yet. Matt is feeling ok -- he has had some bad side effects lately -- they come and go every month or so.
9/14/04: Matt saw Dr. Kahn yesterday for a bone marrow biopsy. Dr. Kahn still had a hard time getting an aspirate -- no one understands what this means. He also took a peripheral blood sample in case the lab is unable to do a FISH test on the aspirate. We have agreed that it's not necessary to do regular PCR tests at this point. We should have the results of the FISH tests in a few weeks. This biopsy was one of the most difficult so far and Matt is still pretty sore. He has generally been feeling very well -- he gets a bad patch of side effects about once per month.
6/17/04: Great news! Matt's FISH and PCR tests both came back negative.
6/11/04: Matt saw Dr. Kahn this week for his PCR and FISH tests. Dr. Kahn explained that the most recent PCR test (result was 0.006) was a quantitative test. The PCR before that (result was positive, 0.01) was qualitative and he has no idea what the 0.01 number means. We should get the results of this week's tests in the next two weeks. Dr. Kahn also confirmed that there have been some very encouraging results in early trials of a new drug -- people who were resistant to Gleevec have been getting some response to this new treatment. Matt also told Dr. Kahn that we are frustrated with the lack of communication between him and Dr. Forman. He promised to be more proactive in contacting Dr. Forman, but we are still planning to find a local CML specialist. Matt's Gleevec side effects have been more uncomfortable than ususl this week -- he has been tired and nauseous a lot. Hopefully this spell will pass quickly.
5/28/04: We got the results from Matt's PCR test last week. As usual they are a little confusing. The value was 0.006 which is lower than the value from March of 0.01. While it is encouraging that the number has not continued to rise, we still do not know whether these positive results represent a significant increase from the negative PCR values from last fall. Also, Dr. Kahn's office said that it might not be possible to compare this result to the earlier tests because it is a different test -- we have not been able to figure out what that means. We are waiting to hear back from Dr. Forman for his take on this result. We did receive the names of two CML specialists in Chicago and will schedule consultations soon. Matt has been feeling very well with no serious side effects. In other news, Matt successfully defended his thesis on Tuesday, so he is finished with his PhD! His parents, Bryce, Jon, Gody, Jack, and I all went to the defense and joined several other friends for a nice party at his advisor's home afterwards.
5/9/04: Matt had blood drawn for a PCR test on Friday. He also had a CBC -- all his counts were normal. We were quite frustrated because we had agreed with Dr. Forman that all the tests (cytogenetics, FISH, and PCR) should be done at this time, but Dr. Kahn's nurses refused to do the cytogenetics and FISH tests. We were not able to speak with Dr. Kahn but they told us that he said we only needed PCR at this time. We have been increasingly frustrated with Dr. Kahn's office and their inability to communicate with us and with Dr. Forman. We are planning to find a CML specialist in the Chicago area who will be better able to work with us and Dr. Forman. In the meantime, Matt plans to push Dr. Kahn for a FISH test next week.
4/12/04: Matt spoke to Dr. Forman on the phone tonight. Dr. Forman is concerned about the increasing PCR values and frustrated that we have not been able to get a good sample from the biopsies. He does not want to wait until June for the next round of tests -- he suggests that Matt have cytogenetics, FISH, and PCR tests done on his blood in early May. If those results are not encouraging, it is likely that we will go to California to have all the tests repeated at City of Hope. If the test results point to relapse, one option is to increase Matt's Gleevec dose to 800 mg. Of course another option is transplant, but we are all hoping it doesn't come to that. It is scary to hear that Dr. Forman is concerned, but it's important to remember that Dr. Forman is a very cautious person and is easily concerned -- which is a good quality in an oncologist. It is still very likely that everything is ok but we agree with Dr. Forman that we should be as cautious as is reasonable in monitoring the CML so that if there is a relapse we can catch it early.
4/7/04: Sorry for the delay in posting the results of Matt's tests. Jack was born on March 8 and we have been rather busy ever since. The cytogenetics came back negative in the 13 cells that were tested. Usually 20 cells are examined, but Matt's marrow is still "empty" as a result of the Gleevec treatment, so we were unable to get a full sample. For the same reason, no FISH test could be done on the marrow. The PCR test came back positive with a value of 0.01. It was worrying to us and Dr. Kahn that the PCR tests appear to be getting worse (from negative to weakly positive to positive) so in late March a blood sample was taken so that we could get a FISH test in the blood. Today we found out that the FISH test was negative (2/200) -- FISH tests have a small false positive rate, so 2/200 is considered negative. This is very reassuring. Dr. Forman has said in the past that he will not recommend pursuing transplant unless the FISH test becomes positive. Also, no one has reached Matt's level of CML suppression on Gleevec and relapsed, so it is very likely that everything is fine. Nonetheless, we will be hoping that the next PCR test (which will be in June) does not continue the trend of increasing values.
3/1/04: Matt's bone marrow aspiration is on Wednesday. We are hoping to get cytogentics and FISH on the bone marrow which we were unable to get in December. We are doing fine, although Matt is going through a bad patch with side effects. It seems that he either has all of them (swollen face, nausea, fatigue, and coldness) or none and for the past few days he has had them all. Hopefully this period of bad side effects will pass quickly since Matt will be working hard to coach me through the baby's birth soon!
2/11/04: We have no major CML news. Matt's side effects have not been particularly bad lately which is good because we have both spent a lot of energy getting moved in to our new house. We are not finished yet, but it is becoming more livable every day. Matt has a bone marrow aspiration scheduled for March 3. This is similar to a bone marrow biopsy except they do not need a core of hard marrow so it is a little less uncomfortable. Cytogenetics and FISH testing will be done on the sample to verify that Matt's marrow has the same low level of Ph+ cells we have seen in earlier blood tests. His 3 month blood PCR test will also be done at this time. We expect everything to show that he continues to do very well and have extremely low levels of Ph+ cells, but it is very important to monitor the CML carefully so that we can catch a relapse early if it does occur.
1/22/04: Matt had his routine bloodwork done today. All of his counts are normal. He has been feeling very good lately even though we are both a little stressed out about our home buying and selling -- it looks like we are going to close on our new house and move in next week so that will be a big relief. WBC=4.4, Hgb=12.7, Plt=236
1/7/04: Matt and I just got back from a nice long visit to San Diego. We met with Dr. Forman on December 23 as planned. His advice is that since Matt has had such a good response to Gleevec, he should stay on Gleevec and not go to transplant unless he begins to relapse. He will have bone marrow biopsies every 6 months, blood PCR every 3 months, and continue more frequent monitoring of his CBC levels. If at any time Matt loses his response to Gleevec so that he becomes FISH positive or sees a large increase in PCR levels then we would reconsider the transplant option. All in all Dr. Forman seemed much more positive about the long term prospects on Gleevec than when we met with him last March. He has been very pleased with the recent results that suggest very low relapse rates for people in Matt's situation. We were happy and relieved to hear that Dr. Forman's point of view was similar to our own and that it is unlikely Matt will need a transplant anytime soon. Dr. Forman thinks that the difficulty with obtaining a marrow sample from Matt's last biopsy is related to the fact the marrow is still recovering from the trauma of being overrun with CML cells and having most of them killed quickly by the Gleevec. He says that they see similar marrow conditions in people who have undergone traditional chemotherapy. He is hopeful that we'll be able to get a better sample if Matt has another biopsy done in March.
12/19/03: We got some frustrating news yesterday -- the sample that was taken for cytogenetics/FISH testing from Matt's bone marrow biopsy failed to grow in the lab, so the tests could not be done. This means that while the blood PCR test remains good, we do not know what is going on in the marrow and Dr. Forman wanted to have those results before making a recommendation regarding transplant. So it is likely that Matt will have to have another bone marrow aspiration sometime soon. As far as we know, it doesn't mean anything about Matt's health that the marrow sample failed to grow.
12/9/03: Today we got some of the results from Matt's visit to Dr. Kahn last week. The visual inspection of the bone marrow was good -- no new abnormalities. There is a note that Matt's marrow has "serous atrophy of fat consistent with treated CML." We don't know exactly what that means, but it might explain the difficulty Dr. Kahn had in obtaining a sample. The cytogenetics and FISH results are not back yet. The PCR test (which was done on blood -- not marrow) came back weakly positive. This test has a sensitivity of 1/10000 just like the PCR test from October. It probably does not mean that Matt has actually gotten worse -- simply that in October the fraction of BCR-ABL transcripts was just below the sensitivity of the test and now they have fluctuated to just above the sensitivity of the test. Dr. Forman has copies of these results and we have asked him if it would be worthwhile to get a more sensitive, quantitative PCR test done before we meet with him. Matt and I are busy getting ready for the holdiays, trying to buy a house, and preparing for the birth of our son. Matt is having a good spell with respect to side effects -- he has been feeling quite well since late November.
12/3/03: Matt's bone marrow biopsy was today. Dr. Kahn had a little bit of trouble getting the sample he needed so it took longer than usual, but Matt says it was not very painful. We expect to get the results in the next few weeks. They will do conventional cytogenetics, FISH, and PCR. Generally it is expected that the results will agree with the blood PCR test that was done in October, but it is possible for the blood test to look good when there is still a problem in the marrow, so it will be very helpful to have the marrow results. WBC=4.9, Hbg=12.7, Plt=198
11/11/03: We have scheduled Matt's next bone marrow biopsy for December 3 and a consultation with Dr. Forman for December 23. Dr. Forman feels that it is important to know the results of cytogenetics and PCR on the marrow before we meet with him and it will have been almost 6 months since Matt's last biopsy so the timing is good. Matt continues to feel quite bad -- he is having a lot of nausea, headaches, and fatigue. He was able to get quite a bit of work done last week but has been completely exhausted since then. We will discuss this with the doctors but there is probably not much that they can do about the Gleevec side affects and it is not considered a good idea to reduce the dose unless absolutely necessary.
10/30/03: We got Matt's CBC results from earlier in the week and everything was normal. He has been having very bad side effects -- nausea, fatigue, face swelling, and badly blurry vision -- for several weeks now. This week seems to be a little better in that he has been able to work quite steadily but not without a lot of fatigue and blurry vision. He is sleeping more hours per day than I am, which is not easy to do! Now that we have the CBC results we know that there's nothing in his blood (like a drop in hemoglobin) contributing to the fatigue, so it is probably just part of being on Gleevec. Usually the side effects go through cycles of getting better or worse so hopefully he will start to feel better soon.
10/28/03: WBC=4.0, Hgb=13.5, Plt=178
10/10/03: Today we got the best possible news -- Matt is negative by PCR. The test has the ability to detect the equivalent of one in 10,000 leukemia cells, so this means that less than 0.01% of his cells have evidence of leukemia. We recently read an article from NEJM in which they evaluated the chance of progression to accelerated CML as a function of PCR levels -- of patients who achieved a factor of 1000 or better reduction in their disease load at one year, none had progressed by 2 years. Of those with CCR but less than a factor of 1000 reduction, 5% progressed by two years, so lower PCR values do make a big difference. It is not completely easy to translate between Matt's PCR result and the results quoted in the article because the actual numbers vary from lab to lab, but it is safe to assume that Matt's disease reduction is greater than the factor of 1000 quoted in the article. We are very lucky as only a small fraction of patients respond this well to Gleevec. Of course we still have to discuss this result with Dr. Forman, but the most likely scenario is that Matt will continue on Gleevec with frequent monitoring of his PCR level. If the PCR level begins to rise, we will have time to start the transplant process before the relapse progresses very far, so this is a very good, safe position to be in.
10/06/03: We got a message from Dr. Forman today that he would like to wait and see the result of the PCR test before scheduling our visit to City of Hope. He confirmed what we had discovered about the false positive rate in the FISH test -- there is still a chance that Matt's PCR test will come back negative (or with very low disease load) even though the FISH test was 4/300. We should get the PCR result sometime this week.
09/29/03: We have learned a little bit more about the FISH test that makes us feel better about last week's results. In addition to the statistical error on the measurement, we found out that there is a small rate of "false positives" which means that it is possible that Matt's Ph+ level is considerably lower than we thought on Friday. Of course it's still possible that he is hovering near "zero" on FISH which means more disease load than we had hoped. The PCR test should tell us a little more -- we will get that back in the next few weeks.
09/26/03: We got Matt's 6 month FISH results back today. They found 4/300 Ph+ cells or 1.3%. This is a good result and is considered "complete cytogenetic response" since the conventional cytogenetics tests only 20 cells. Since Matt was close to zero they went ahead and took more blood for a PCR test which is the next level of sensitivity. We won't get a lot more information from that test right now, but it is good to have the first PCR test done now so we will have a baseline in the future if Matt becomes negative by FISH. We are a little disappointed as we were hoping Matt would be completely negative since he was only 20% Ph+ at 3 months. However, he is still responding well to the Gleevec so we will just have to wait another 3 months to see what his next biopsy, FISH, and PCR tests show.
09/24/03: We still have not heard the results of Matt's FISH test. We expect them sometime in the next week. We did hear back from the NMDP about my HLA results -- apparently the problem was that the lab took a very long time to process my sample so my typing was not in the database until recently. The woman at NMDP is going to mail a copy of the results to us so that we can be sure that they get to Dr. Forman. This is very important because it will help us decide whether or not we need to store the baby's cord blood for Matt and will tell us the odds of the baby being a related match for Matt.
09/17/03: Matt's 6 month appointment with Dr. Kahn was today. It was a routine visit and blood was drawn for a FISH test to measure the fraction of Philadelphia chromosomes in Matt's blood. It will be several weeks before we get the results. WBC=5.0, Hgb=12.0, Plt=210
09/12/03: Matt and I are back from a visit to Vermont. While we were there we got wonderful news from City of Hope. Two donors who are 12/12 matches to Matt have been identified. Both are men roughly our age. The 12/12 match means that they have antigens and alleles identical to Matt's at all sites thought to be important for transplant -- they are the best unrelated matches we could have hoped for. Of course we are not going to make a decision about whether or not to go ahead with the transplant until we find out the results of Matt's 6 month cytogenetics and talk to Dr. Forman, but it is good to have the option and know that these two donors exist in case Matt needs them.
08/25/03: Matt and I celebrated our wedding anniversary on Sunday -- so much has happened since our wedding day that it seems very long ago! It has been a wonderful year. On our way home from dinner we found two very special anniversary gifts -- 6 week old kittens playing in the middle of Michigan Avenue. We caught them and took them home and are quite taken with them.
We have no major news on the CML situation -- Matt's 6 month follow-up will be on September 17 (they will test his blood for the Ph+ percentage using FISH and a biopsy will be necessary only if the blood test is completely negative). Then we will have a consultation with Dr. Forman in October -- we are planning to combine the trip to City of Hope with Matt's thesis defense. We have been exchaning phone calls with the NMDP trying to track down my HLA typing results which never made it to City of Hope, but haven't had any luck so far -- this is important because it will let us know whether or not there is a chance that our children could be possible donors for Matt. Gleevec side effects remain unpleasant but manageable. WBC=5.4, Hgb=12.6, Plt=217
07/31:03: I haven't posted an update in quite a while as things have not changed much in the past month. We do have good news from City of Hope -- Blue Cross approved Matt's donor search so that process has begun. We spoke to Dr. Forman briefly in the middle of the month but he was quite rushed and we weren't able to talk very much. We are planning to schedule a meeting with him in the fall to have a serious discussion of the treatment options. Matt had his liver function test repeated last Friday and everything was in the normal range, so the high alkaline phosphatase reading from June was probably just a fluctuation. In terms of day to day life, things are pretty normal. Matt is still training for the Chicago Marathon and is running more than 40 miles per week. The worst of his side effects is the swelling in his face which puts pressure on his ears and causes them to hurt. The severity of this seems pretty random. He still has occasional nausea. He is still having trouble with blurry vision, particularly if he gets tired, and he is not able to work full time without exhausting himself.
07/25/03: WBC=5.5, Hgb=12.5, Plt=235
07/09/03: Matt has been a little more troubled by side effects lately, but he is doing ok. He officially started his new job at UCLA on July 1 and all the paperwork has been filed, so we are now on Blue Cross insurance. This means that the donor search through City of Hope can begin soon. We are hoping to get a phone consultation with Dr. Forman scheduled soon. We are not expecting him to make any recommendations about transplant yet, but we want to know what his thoughts are at this point. WBC=5.6, Hgb=12.4, Plt=181
06/27/03: Matt talked to Dr. Kahn today. His biopsy results are back -- he has 4/20 (20%) Philadelphia chromosome positive cells which is classified as a major cytogenetic response. About 85% of chronic phase patients get a MCR. Dr. Forman had said that he would expect Matt to be around 50% at 3 months and a recent article from Dr. Goldman defines a "good response" as MCR within 3 months. So this is expected but good news. Matt didn't get a chance to discuss any more details of the biopsy result with Dr. Kahn, but we will discuss it in detail with Dr. Forman as soon as he gets his copy of the results.
06/25/03: We haven't heard anything about Matt's biopsy results yet. We really shouldn't expect the results until late this week or early next week but we are still impatient!
06/19/03: Matt talked to Dr. Kahn's office today. We got the results of his liver function test which was done on Monday. Everything is normal except for alkaline phosphatase which is a little high -- it is 130 U/L and normal is 20-125. This seems to be pretty common for people on Gleevec and Dr. Kahn is not at all worried. Matt will have another liver function test in 6 weeks. We will not have any results on the biopsy until next week. Apparently the lab that does the biopsy analysis does not send their report to Dr. Kahn until everything is finished. In other news, this evening Matt and I ran a local 5k that is a benefit for leukemia research. Neither of us were particularly happy with our times, but we had fun and Matt is a lot faster than he was before he started treatment.
06/16/03: Matt had his bone marrow biopsy today. It was a little more painful than the first one but he insists it was really not bad at all. They gave him a local anesthetic so he didn't really feel pain as much as pressure and discomfort. I thought I was handling everything fine right up until the doctor said I was turning green! I did get a little light-headed but managed not to faint -- you see stories on TV about med students passing out in the OR and now I understand. I'm sure I will get used to it and handle everything as well as Matt does in the future. Dr. Kahn said that he got a good sample and we will have some results from the biopsy this week but shouldn't expect the cytogenetics for another few weeks. WBC=7.1, Hgb=12.0, Plt=166
06/13/03: Good news on the insurance front! We heard today from the benefits counselor at UCLA that their Blue Cross PPO plan does cover the donor search once the transplant is approved. I spoke to a woman at Blue Cross's transplant office earlier this week and she assured me that as long as our doctor is at a "Center of Expertise" (which City of Hope is) his recommendation regarding medical necessity would be respected. Blue Cross was our first choice among the UCLA plans because it seems to be the best overall insurance plan, it allows us to continue to work with City of Hope for transplant issues, and it is a national PPO so it allows us to remain in Chicago. Matt's new job at UCLA starts on July 1, so we will start the transplant approval process then. Matt also heard from Dr. Kahn today -- Matt's CBC counts have been stable enough that he can go to monthly blood tests instead of weekly.
06/11/03: Matt is feeling about the same as he has been -- he will have a lot of energy for several days and then get very tired for several days. Gody is visiting us this week -- that has been a lot of fun, though we fear we're not the most exciting hosts. Matt's 3 month bone marrow biopsy is coming up on Monday. The results of that will tell us how much the Gleevec has been able to reduce the fraction of Philadelphia chromosomes in his marrow. WBC=4.8, Hgb=12.1, Plt=167
06/04/03: Matt's side effects returned last weekend and he felt pretty awful but he is feeling better now. It seems that the side effects are going to come and go without any pattern. WBC=5.5, Hgb=11.7, Plt=178
05/28/03: Matt is feeling much better these days -- he seems to have adjusted to the increased dose. He has been doing a lot of running and is enjoying being fast again! WBC=6.3, Hgb=11.6, Plt=174
05/21/03: Matt's side effects continue to be worse than they were before the dose increase but they are quite manageable. Peter, Donna, and Bryce are arriving tomorrow evening and staying through Monday. We are looking forward to seeing them and doing some fun touristy stuff in Chicago. WBC=5.4, Hgb=11.6, Plt=170
05/15/03: We heard from Dr. Forman that Matt's parents do not match. Both of them are "half-matches" since they are his parents, but this is not useful for transplant purposes.
05/14/03: We had a nice trip to Annapolis and enjoyed seeing my family and meeting Teddy's family. We got back pretty late on Sunday night but got a lot of sleep early in the week so we aren't too tired. No changes in Matt's side effects -- they are manageable and he continues to be able to run. WBC=8.2, Hgb=11.6, Plt=197
05/07/03: We are doing fine -- Matt still has more side effects than he had before the dosage increase but he has been taking it easy and feeling ok. We are leaving tomorrow morning for Neil's and will be back on Sunday night. WBC=7.7, Hgb=10.3, Plt=163
05/05/03: Matt's side effects have returned with the increased Gleevec dose -- he is experiencing fatigue, joint pain, nausea, and soreness and swelling in his face. None of these side effects are terribly severe and we are hopeful that his body will soon adjust to the increased dose.
05/02/03: Matt had an appointment with Dr. Kahn today. Dr. Kahn is very pleased with Matt's progress and is not concerned about any of his side effects. He is increasing Matt's Gleevec dosage to 600 mg from 400 mg. Studies have shown that increasing the dose can increase the probability of complete cytogenetic response so since Matt is tolerating Gleevec well there is no reason not to go with the higher dose. Matt has an appointment on June 16 for his 3 month cytogenetics test. Dr. Kahn wants to do a FISH test (which uses peripheral blood stem cells) but Dr. Forman had advised getting a bone marrow biopsy -- we will discuss this with Dr. Forman before deciding whether or not to press for the biopsy. Dr. Kahn is very excited about Gleevec and does not recommend a transplant unless Gleevec starts to fail. He did receive Dr. Forman's letter and is happy to work with either City of Hope or Hutchinson. WBC=7.2, Hgb=12.2, Plt=181
05/01/03: Matt spoke with Dr. Witherspoon at the Hutchinson Center today. He was very understanding about the insurance situation and said that this sort of thing has happened before. If we decide to go with Hutchinson all that will be required to start the donor search process will be a phone call from Dr. Kahn and another blood sample -- we would not have to go to Seattle yet. He said that City of Hope and Hutchinson are equally good facilities. He said that UCLA used to be a top center but that many people have left -- he was not sure of the current status of their transplant program. Since it will not be difficult to get the search started at Hutchinson, we will continue our appeals with the insurance company to get approval for City of Hope -- if we fail to get approval we know that we can fall back on Hutchinson without a lot of delay.
04/30/03: We have had a good week. Matt had a lot of energy over the weekend but may have worn himself out a little painting the kitchen -- he was quite tired on Monday and Tuesday. He has not been having any other Gleevec side effects. He has been running regularly and getting some physics work done. We have been having battles with the insurance company. Right now they are saying that they will not pay for anything else from City of Hope because they are within 50 miles of UCLA so Matt is required to use UCLA facilities. UCLA has not had as much experience or success with transplants as City of Hope so we will not use them. Ironically, the insurance will pay for everything at an "out of area" facility so the Hutchinson Center in Seattle would be covered. Hutchinson is the biggest and best transplant center in the country so going there is a viable option but would mean starting from scratch at a new facility with an unknown doctor so we would prefer to stay with Dr. Forman and City of Hope. All of this is quite pressing because the full search for unrelated donors must be done through a transplant center and needs to start as soon as possible. We are exploring a number of options and will probably find a way to get things paid for at City of Hope but we find the whole insurance situation maddening. Matt has an appointment with Dr. Kahn on Friday and will discuss Gleevec side effects and insurance issues with him then. WBC=5.9, Hgb=10.9, Plt=180
04/23/03: Today Matt spoke to Dr. Charles Sawyers at UCLA to discuss the treatment options for CML. Dr. Sawyers is a research doctor at UCLA's Jonsson Cancer Center who has been involved with the Gleevec trials. We were put in touch with Dr. Sawyers by Matt's advisor, David Saltzberg. Dr. Sawyers said that if a matched sibling donor were available it would be very difficult to choose between a transplant and treatment with Gleevec. Given that Bryce is not a match, he would recommend continuing treatment with Gleevec and considering a transplant only if Matt does not achieve a complete cytogenetic response (CCR) or begins to relapse after achieving CCR. He recommends monitoring Matt's progress with PCR testing in addition to cytogenetic testing. The PCR test is able to detect much lower levels of Philadelphia chromosomes and so is able to predict relapse very early -- this should lower the risk of progressing suddenly to a more advanced phase of CML. He would recommend raising the dose of Gleevec only if Matt is not able to achieve CCR on his current dose. He said that in studies of patients on interferon (the standard treatment before Gleevec) CCR was an excellent marker for long-term survival -- very few patients were able to achieve CCR but those that did had an excellent chance for living 10-15 years. Dr. Sawyers is involved in studies of several new drug treatments that are in the initial phases of clinical testing. If this testing is successful he expects these drugs to be available for large clinical trails (probably open to people who are not able to maintain CCR on Gleevec) in 3-5 years. As for transplants, he said that the current standard is to do peripheral blood stem cell (PBSC) transplants rather than bone marrow transplants as the PBSC graft more quickly. We have read about PBSC transplants but did not realize that they have become the norm -- we will verify this with Dr. Forman next time we speak to him. Dr. Sawyers also believes that transplant technology is improving so rapidly that any increased chance of survival from having a transplant in the first year would be outweighed by the improvements in transplant technology that would have come along in the intervening years. Dr. Sawyers said that this very question -- transplant vs. Gleevec -- is the most controversial topic in his field at this time and that there are extremely well-informed, intelligent people on both sides of the debate.
Matt has been feeling better and more energetic lately. This makes sense in light of the higher hemoglobin count in today's CBC. WBC=5.6, Hgb=10.5, Plt=190
04/20/03: Happy Easter! The rotating Gleevec side effects continue -- Matt's nausea and muscle aches have improved quite a bit but he has been fatigued and frequently has trouble focusing his eyes. He is planning to report all this to Dr. Kahn next time they talk. He was able to run twice this week and felt quite good.
04/18/03: No new news. Matt is still feeling very tired. We have been busy putting our wedding album together now that the pictures have arrived.
04/16/03: We got the results of Bryce's HLA typing -- he and Matt do not match. Dr. Forman said in his email that he found a number of potential unrelated matches in the international registry, so he will pursue those while we are waiting to see how well Matt responds to Gleevec. WBC=3.8, Hgb=9.7, Plt=234
04/15/03: Matt had been having less trouble with Gleevec side effects lately but the muscle aches were quite bad last night.
04/13/03: I am back in Chicago. Matt ran again today. He has been making an effort to keep food on his stomach all the time and this really seems to be helping with the nausea.
04/11/03: Matt ran 2 miles today. He felt pretty good but his calves were sore from Gleevec.
04/10/03: We found out that Matt's blood test yesterday was normal! This is very good news -- Matt is responding to the Gleevec. It should also mean that he will be cleared to exercise again. I am going to Atlanta for the weekend for Hazel's funeral and am leaving Matt and Moses home alone.
04/09/03: Our plan of eating breakfast immediately upon waking seems to have helped with the morning nausea. Matt was actually hungry for lunch today and now his nausea is from Taco Bell! We found out today that the hospital lost Bryce's blood so we won't have the HLA matching for a little while longer. WBC=9.1, Hgb=10.5, Plt=227
04/07/03: I went to have my blood drawn for HLA typing so that I can join the National Marrow Donor Program. My arm hurt for hours afterwards and is still bruised. Matt assures me that he has big veins and the poking is not as uncomfortable for him.
04/06/03: Matt is home from Philadelphia. He is starting to experience more side effects from the Gleevec -- he is having muscle pain and morning nausea.
04/04/03: Matt flew to Philadelphia for the APS/DPF meeting today. His WBC counts are now low enough that he will need weekly rather than daily blood tests. WBC=29.5, Hgb=9.3, Plt=191
04/03/02: WBC=21.5, Hgb=9.5, Plt=199
04/02/03: WBC=29.6, Hgb=9.4, Plt=191
04/01/03: We're back in Chicago after a very nice visit to San Diego. Bryce had his blood drawn this morning for HLA typing. WBC=33, Hgb=9.3, Plt=205
03/31/03: We met with Dr. Forman at City of Hope in Los Angeles. Dr. Forman is the director of Hematology and Bone Marrow Transplantation. He feels that while Gleevec is a wonderful breakthrough, he does not expect it to allow for a normal lifespan. He feels that a bone marrow transplant is still the only known cure and something that Matt should consider seriously if a matched donor is found. Matt had blood drawn for his HLA typing while at City of Hope. Bryce will have his HLA typing done later this week. There is a 25% chance that Bryce will be a match and a roughly 50% chance of finding an unrelated matched donor in the national registry. Assuming that we find a donor and Matt responds well to the Gleevec, the decision about the transplant should be made after the six month marrow biopsy. Dr. Forman expects that if Matt responds well to the Gleevec he will have 50% Philadelphia chromosomes by his 3 month bone marrow biopsy and complete cytogenetic response (0% Philadelphia chromosomes) by 6-9 months. If he does not respond well then we would have to consider the transplant sooner. WBC=52.1, Hgb=9.6, Plt=172
03/28/03: Dr. Kahn has taken Matt off of Hydrea -- his WBC has gone down enough that we can safely let Gleevec take over. WBC=106, Hgb=9.2, Plt=141
03/27/03: WBC=116, Hgb=9.1, Plt=138
03/26/03: WBC=141, Hgb=9.2, Plt=143
03/25/03: We flew to San Diego to spend time with the Worcesters.
03/24/03: WBC=190, Hgb=9.6, Plt=143
03/22/03: WBC=244, Hgb=11.2, Plt=166
03/20/03: WBC=271, Hgb=9.8
03/19/03: WBC=260, Hgb=8.5
03/18/03: Matt's WBC is still very high so he began taking Hydrea in addition to Gleevec to get the counts under control. WBC=240
03/17/03: WBC=305
03/14/03: Matt began taking Gleevec (400 mg/day). We met with Dr. Kahn to discuss CML and treatment options. He was very positive. There is an excellent chance that Matt will respond to the Gleevec and be able to live a normal life, though he will have to be on Gleevec indefinitely.
03/12/03: Dr. Kahn confirmed the diagnosis of CML. Matt is to begin daily blood tests.
03/06/03: Matt went to the doctor because of increasing inability to complete running workouts. The blood test taken by the GP came back abnormal and he was advised to see a hematologist immediately. WBC=?? (Matt was just told "very high"), Hgb=10.3, Plt=188

Normal Values for CBC Counts
WBC White Blood Cell 3.5-11.0
Hgb Hemoglobin 13.5-17.5
Plt Platelets 150-450

History of Matt's Blood Counts

Information

Treatment Strategy
Here is an article from the Mayo Clinic Proceedings from 2006. It is nominally about the transplant decision, but it provides a pretty good overview of CML and current treatment options: Stem Cell Transplantation in Patients with CML: When Should It Be Used?
Here is an article from Fall 2005 about the transplant decision: Rethinking Allogenic Stem Cell Transplants for CML in the Gleevec Era
Here is an article from OHSU on the transplant decision: Transplantation for chronic myelogenous leukemia: yes, no, maybe so
Here is an extensive review of CML which includes some strategies for possible future treatment options: CML as a paradigm of early cancer and possible curative strategies
Here is a web lecture series on CML treatment and montioring. The speakers are all world experts in CML treatment. You must be registered for Medscape (free registration) in order to access this webcast: Changing Paradigms in the Treatment and Monitoring of CML
Here is an article by Dr. Druker (who is one of the primary developers of Gleevec) on his ideas for treatment strategies: CML in the Imatinib Era
Here is a recent journal article which describes the treatment options for CML: Hematology 2002
Transplants
Here is a journal article comparing graft-vs-host disease in "mini" transplants and conventional transplants: Graft-versus-host disease after nonmyeloablative versus conventional hematopoietic stem cell transplantation
Here is a journal article on the current "state of the art" in traditional BMT: HLA-matched related hematopoietic cell transplantaion for chronic-phase CML using a targeted busulfan and cyclophospahmide preparative regimen
Here is a journal article on "mini" transplants: Nonmyeloablative allogenic stem cell transplantation for the treatment of CML in first chronic phase
Here is a journal article on HLA typing: Major-Histocompatibility-Complex Class I Alleles and Antigens in Hematopoietic-Cell Transplantation
The National Marrow Donor Program facilitates unrelated marrow and blood stem cell transplantation. Their web site describes what is involved with becoming a potential donor and where to sign up in your area. The chances of any one unrelated person matching Matt are very small but there is always a chance that you would be able to help him or someone else in the same situation. In order to join the program, one must fill out a health questionaire, give a sample of blood, and pay a small fee to offset the cost of typing. When I joined, they took two vials of blood and it cost $65. If you want the results of your test sent directly to Matt's doctor at City of Hope, there is an additional form to be filled out -- contact us for the hospital's mailing address. If you are identified as a potential donor for someone, you will be asked to go in for additional blood tests. If you match, you will attend an information session and will be asked to make a final decision about your availability as a donor. You might be asked to donate marrow or blood stem cells. The marrow collection process is a surgical procedure that requires an overnight hospital stay. The blood stem cell collection process involves taking a drug for several days to increase the number of stem cells in your blood and then having your stem cells harvested through apheresis -- it is similar to donating platelets. If you are interested in becoming a potential donor and need more information than you can find on the NMDP website, please contact us and we will be happy to help.
Gleevec
Here is an article from NEJM with the 5 year results from the Phase III Gleevec trials: Five-Year Follow-up of Patients Receiving Imatinib for CML
Two articles from NEJM with the Phase I trial results of the next generation CML drugs:
Nilotinib in Imatinib-Resistant CML and Philadelphia Chromosome-Positive ALL
Dasatinib in Imatinib-Resistant Philadelphia Chromosome-Positive Leukemias
Here is a very important article from NEJM discussing further results from the Phase III Gleevec trials. They have determined that the probability of progression after reaching CCR can be determined from BCR-ABL levels which are measured by PCR testing: Frequency of Major Molecular Responses to IM
Here are some letters to Blood regarding dose escalation as a response to Gleevec resistance: Transient benefit only from increasing the IM dose in CML patients who do not acheive CCR on conventional doses
Here is a journal article on high (800 mg) doses of Gleevec: Result of high-dose imatinib mesylate in patients with Philadelphia chromosome-positive CML after failure of interferon-alpha
Here is a journal article on mutations and Gleevec resistance: Implication of mutations in imatinib-treated CML
Here are two articles from the March 2003 New England Journal of Medicine which document the latest results from the Gleevec trials:
- Imatinib Compared with Interferon and Low- Dose Cytarabine for Newly Diagnosed Chronic-Phase Chronic Myeloid Leukemia
- Imatinib Mesylate - The New Gold Standard for Treatment of Chronic Myeloid Leukemia
Other

Here is a listing of many medical journal articles on CML: CML Support Journal Articles

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Normal Values for CBC Counts
WBC	White Blood Cell	3.5-11.0
Hgb	Hemoglobin	13.5-17.5
Plt	Platelets	150-450

Updates on Matt's CML

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Journal

History of Matt's Blood Counts

Information

Treatment Strategy

Transplants

Gleevec

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Journal (Updated frequently)
History of Matt's Blood Counts
Information on CML
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