New diagnosis, sorta....

I can't believe it was just a week ago, but I made a "pilgrimage" to MD Anderson in Houston for a 2nd opinion from the leukemia department head, and his list of awards is staggering. He is also in his 60's even though he doesn't look that old, so he has a huge amount of of experience. Due to the fact that my Oncologist in New Orleans is in her mid to late 30's, I figured with me going so far off the beaten track as far as AML is concerned, I better ask somebody who has seen darn near "everything". Another patient in the waiting room with a good Texas accent asked me if I knew what the MD in MD Anderson stood for, and then told me it was "Most of the Day"!! Considering how freaking huge the cancer center at MD Anderson is, it was very well organized. When I got to meet him it was pretty clear I was talking to the "right guy", and in about 20 minutes he outlined my diagnosis and treatment options on a sheet of paper, and it's take a full week for some of this to sink in.

To review, my initial diagnosis was AML, 25% CD34 blasts, intermediate risk, with t(3:3) mutation. This was picked up by accident as the result of a pre-op physical for a total knee replacement, and I wasn't even aware I had leukemia. No sickness, no pains, mouth sores, infections, no nuthin! At the time I just figured it was a really lucky break that I had the physical, and in retrospect it looks like it was probably something far, far different. The 3+7 treatment also produced minimal side effects, with no mouth sores, no puking, or even an upset stomach. Then the roof fell in, my blast population exploded to 65%, and my doctor at the time told me that it was only because the leukemia ran out of space to grow while I still had enough white cells to barely survive. If I hadn't been at "the original" Mayo clinic at the time, I'm sure I would have died. When Dr. K. was discussing my AML, he used the term "Indolent", which I thought might have been a depreciating comment about my AML running off and hiding in some corner like lazy, homeless, drunk.

So I got up this morning and looked at the sheet of paper again, and there at the top of the page and circled were the words "Indolent Leukemia" . O.M.G...... That's a diagnosis! A far bit of Googling revealed that while "indolent lymphoma" was a fairly common thing which allowed patients to get sick, go through chemo, go into remission, and ultimately survive the disease into old age, there was no mention of indolent leukemia. Dr. K. had told me that it was not than uncommon a diagnosis, but seeing as he is probably one of the top 5 experts in the nation on leukemia, he has probably seen more cases than anybody else. My own oncologist had never heard the term before.

Considering my diagnosis after the 3+7 disaster was refractory leukemia straight up, and my survival with the azacitidine was a 1 in 20 shot that I made with seeming ease, I had thought that the only thing I really had to worry about was how long would this "quick fix" last? I have already referred to the course of my disease as being far out in left field, and then beyond the stadium itself, and finally being over the horizon so I couldn't even see the damn ballpark any more.

As far as next steps, I had a BMB on the 27th, and the results take a week or so. That will let me know if my blast count has gone up, stayed the same or gone down, and seeing as I feel fine as usual, it can't have changed much unless it decided to hit the 6% remission mark and disappear for a while. One option that Dr. K. gave me was to try adding venetoclax pills (YAY!! No needles!) to the azacitidine, and while it's only on label for lymphoma right now, it has been found to be just as useful for leukemia. The other possibility is to use targeted chemotherapy to attack the FLT3 and 1DM1 mutations which can yield a very high kill ratio without damaging healthy tissue. The one catch is that only 10% of the population have the enzymes necessary to provide markers for the chemo to attack and kill the mutations. That means I have to hit odds of 1 in 10. Hah!! Piece of cake!! :roll: Regardless of what the BMB shows, it's time to go in for the kill with one of these two options. I found out today that another patient is getting set up to get the pills, so I was added to the list.

As a result of these revelations, I'm now back in the stadium, but it appears to have been repurposed for an entirely new game! It smells like a combination of snooker and badminton!

In light of this new diagnosis, it might be argued that I no longer fully deserve the DMW handle, but I'm going to keep it for "sentimental reasons", and besides that the Mods would certainly not permit an "ointment in your fly" like me to start running around in here with clean slate!! BMB data will probably be up 1st week in August, along with enzyme marker test.

Chronic Myeloid Leukemia and Chronic Lymphocytic Leukemia are both indolent, manageable leukemias. They manifest completely differently, having either lymphocytes or myeloid cells as their originating cells. CLL is essentially identical to SLL, a lymphoma; the difference being in where they appear. CLL, in particular, is controlled, placed into long term remission by a breakthrough drug, Gleevec. Just how AML morphs into an indolent leukemia is a question for the ages. Although, cells that are not in a mitotic (dividing) process when treatment hits are often spared. Those may be slower dividing cells and so treatment can eliminate the aggressive cells while sparing the slower growing. Or... or... was it an indolent form that was pushed into aggression by treatment, as has been the case with follicular lymphomas?

Often along this road, there are more questions than answers. However, the conclusion in your case is indeed a game changer; a life changer. "Chronic/Indolent" is a blessing in disguise, as it indicates "time" and that time provides for newer, less toxic and more effective treatments to arrive.

As to your username, it seems that reports of your impending demise have been greatly exaggerated.

Thank you for the informed reply!!

Scenario #1 IIRC, there was one hell of a rush to get me into treatment once the AML was discovered, and so it was the result of a single BMB that caused the resulting chemoslide downhill. I had not had a blood test for at least a year previous to that, and it was only the combination of a barely out of spec RBC and WBC that triggered the biopsy. At this point there is no going back in reconstructing what might have been actually happening (or not happening...) in May of 2016, so I guess we'll never know if it was AML or CML that blew up on me. After talking to my wife - this is not an accurate assumption - The Mayo Clinic trusts no one, and so duplicated and verified the AML diagnosis!! :eek:

Scenario #2
The BMB reports have been consistent with an AML CD34 t(3:3) mutation starting with 25%, blowing up to 65% with chemo, then down to 12% with 4 week cycles, and 16% with 5 week cycles, and the coming result will be back down to 4 week cycles. As such, it appears to be a question for the ages, which excludes Dr. Kantarjian, who says that Indolent Leukemia isn't all that rare. This means that the very peculiar smell of snooker and badminton is indeed rife upon the air, and the future is again open to interpretation.

Causality Scenario #1: I am one lucky S.O.B. !! I flew through the eye of an invisible needle to get where I am...:roll:

Causality Scenario #2: I came down to Louisiana last November to live out what was left of my life, and against some stiff odds, I quickly got a job doing Therapy Dog work, which is what I literally live for. The huge medical complex only had 3 small dogs for the whole facility, and so I provided some guidance for the Volunteer Manager to try and find more working teams. The day after my BMB last week the Manager informed me she had 3 teams from national Therapy Dog organizations signed up, and there were 4 more waiting in the wings! This complex sits literally right next to the North levy of the Mississippi, and we all know what happens when pressure on the outside of something manages to find a crack and get through it. Whatever is on the other side changes forever. The inside of the Ochsner complex will shortly have close to a dozen therapy dog teams working inside it, and after things start to change inside the hospital even more will come. Two unexpected but intertwined events less than a week apart happening in New Orleans, aka "The Big Easy", where "Da Fix" is always in. I have to get floor blueprints for the whole damn complex, to map out where all these therapy teams have to go, and who to see. Damn! That could take years before the situation is stable again. ;) FYI: This https://www.google.com/maps/@29.9613.../data=!3m1!1e3 is what I have to sort out, map, and create a coverage plan for the teams to cover. The shortest buildings are 5 stories tall, there are two 11 story towers, and a 20 story tower under construction.

P.S. The venetoclax is on order. You start out with a dosipack type card for a week, and then it's one pill a day........

All scenarios are better than what you were told last year. On the home front, it seems that my marrow may not have MDS at this point. A comfort, since 30% of MDS mutates into AML.

DMW, what great news for you! Congratulations on your new lease on life. Remember that we are all "DMWs" as we journey through this life, there is simply no other destination other than that one. In the meantime, live, enjoy and celebrate you good fortune. I wish you many, many trips around the sun with your new chronic condition.

Good health,

kermica

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Originally Posted by po18guy

All scenarios are better than what you were told last year. On the home front, it seems that my marrow may not have MDS at this point. A comfort, since 30% of MDS mutates into AML.

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Your condition(S), in all their myriad variations, reminds me of a particularly expensive and complicated mechanical watch that strives to duplicate ALL rules governing the keeping of time, including leap years, which add a day every 4 years, turn of century leap years, where a day is NOT added in February, and 4 century century leap years, where a day IS added in February. As such, there is a very tiny gear inside the watch that turns once every 400 years. And you still ride your motorcycle on the curving and rain slicked roads of the Pacific Northwest, which means that none of your vast diagnosis may be relevant on any given day!! Makes sense to me......8-)

What does intermediate risk mean ? My brother was told he's low to intermediate risk.
I went today for HLA typing to find if I'm a match for BMT. My other brother is registered and my one sister will be registering. My other sister can't donate because she's diabetic due to insulin dependency.

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Originally Posted by Teresap14

What does intermediate risk mean ? My brother was told he's low to intermediate risk.
I went today for HLA typing to find if I'm a match for BMT. My other brother is registered and my one sister will be registering. My other sister can't donate because she's diabetic due to insulin dependency.

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In cases of lymphoma at least, there is an index which rates a patient's risk factors in treatment. Here is a link to the Wiki on the International Prognostic Index. I am high-intermediate risk, but have had a transplant, so the IPI barely applies to me.

New Diagnosis. kinda, sorta, & Down the rabbit hole!!

In an attempt to further explore my new diagnosis of Indolent Leukemia (Hey, can I borrow a fiver until Friday?), I have been Googling "Indolent Leukemia" in multiple permutations, and came up with very little. If you Google "indolent" you gets lots of hits on lymphomas, but nothing on leukemia. Finally I thought I had hit pay dirt with this one: https://www.ncbi.nlm.nih.gov/pubmed/1065389 , and it made a lot of sense, and then I looked at the date: 1976??? :shock: I graduated with a B.S. in Chemistry two years earlier, and back then genetics was a wet-bench lab technique like the chemistry I did. Still, they had managed to show results that indicated that it was possible to cause the AML blasts to die and slow the disease down to crawl. The next surprise came from this article: https://www.mycancergenome.org/conte...rpn1-evi1/256/ and you can just read the top two lines of small print: I'm a 1%'er straight up! The last 3 BMB's showed the RPN1/MECOM signature as an abnormality, and the % appears to be growing with time!

Back in the summer/fall of 2016 I had looked at some of the fundamental risk categories for AML in a ~2009 cancer textbook, and it seemed to indicate that the t(3:3) mutation I had was intermediate risk, which seemed about right. Well, either the typesetting was off in that textbook, or I read it wrong! The t(3:3) was HIGH risk, and had the dual nastiness of sneering at the chemo and watching it wither and run away, and also the average lifespan was about 6 months! I had clinically verified the first part of that with a near-death experience, and the 2nd part was my diagnosis, right on the money! :shock: The good news, which was just a weird, was neither the 3+7 or the azacitidine made me puke, feel dead or anything else. Chemo week gave a "sorta" case of the blaahs and Annabelle and I still kept/keep working in the hospital. I also found the side effect list for azacitidine, and it's long and nasty. Good thing nobody ever told me about it! 8-) The other puzzle piece I was able to locate was some clinical evidence that despite the bad news about the t(3:3) being the kiss of death, some additional mitigating factors were found: Patients with inv(3)/t(3;3) and balanced t(3q21) at diagnosis presented with higher WBC and platelet counts. In multivariable analysis, only inv(3)/t(3;3), but not t(3q26) and t(3q21), predicted reduced relapse-free survival (hazard ratio [HR], 1.99; P < .001) and overall survival (HR, 1.4; P = .006). At 1st diagnosis I did present with higher WBC and platelet counts, so that good news applies to me.
So it would appear that while the smell of snooker and badminton is still in the air, the stadium is nowhere in sight, and I have no idea where I am! I do have Dr. Kantarjian's email, however, and based on his diagnosis which is eerily prescient, I can ask for directions. There are a lot of gaps to be filled in, but it still appears that I have a good bit of time left. There is one intriguing aspect of all this, and AKAIK Dr. Kantarjian is about 4 years younger than me. As such, he probably got out of medical school in about 1975, and that original article from 1976 was probably "The NEW news" back then, so he MUST have seen it! Isn't time a funny old thing??

The only indolent myeloid leukemia is Chronic Myeloid Leukemia. The reason that so many papers are from the 70s is that the 1970s were the last time an advance against AML was made. Will have to study up some more on the leukemias, but it is possible that you might have had both AML and CML simultaneously. Or, the treatment killed the most aggressive clones, leaving only the slower growing variety. Or, you might be just another 1%er.