Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Very bad news... We received word yesterday that Sal has relapsed already, just 8 weeks after his last dose of chemo during his 4th round of consolidation.
He had gotten the "all clear" to return to work and was scheduled to start on Monday (Dec 30). We were told that there was a 40% chance that Sal was already cured. He was very excited to go back and "use his brain" (he's a software architect). The plan was to have monthly blood draws and quarterly bone marrow biopsies. Last week (Dec 19) Sal had a bone marrow biopsy, which was to be his "baseline." However, there were 27% blasts in his bone marrow. We do not yet have the cytogenic results.
Sal was diagnosed on May 6, 2013 and his original BMB had a sole abnormality of Trisomy 8, negative FLT3, negative NPM. This BMB was done in San Diego, where Sal was working at the time and where he received his induction chemo. When Sal's care was transferred to Stanford Hospital, near where we live, the slides were again reviewed. First consolidation began in July, 2nd August, 3rd September, 4th end of October to beginning of November.
Current blood work:
WBC 2.4
RBC 3.06
Hemoglobin 10.2
Hematocrit 30.3
Platelets 125
Myelocytes 1%
Our hemotologist/onc was as surprised about the results as we were. He is going to confer with the BMT doctor about next steps and begin transferring Sal's care to him. It looks like Sal may be admitted to the hospital on or about January 2 for another induction. The good news is that one of Sal's sisters is a 10/10 match.
In addition to all the medical worries, we are faced with financial stuff as well. I lost my job (due to layoffs) a month after Sal's diagnosis, the day Sal arrived home from the airport from San Diego. But you all have had to deal with this, too...
We are absolutely floored. Has anyone else relapsed so quickly after consolidation? Or heard of this?? It seems that the consolidation rounds merely kept the leukemia in check. Sal was FLT3 negative, but maybe that was an error? (Eddie, didn't they miss the FLT3 diagnosis in your case?)
Monique
He had gotten the "all clear" to return to work and was scheduled to start on Monday (Dec 30). We were told that there was a 40% chance that Sal was already cured. He was very excited to go back and "use his brain" (he's a software architect). The plan was to have monthly blood draws and quarterly bone marrow biopsies. Last week (Dec 19) Sal had a bone marrow biopsy, which was to be his "baseline." However, there were 27% blasts in his bone marrow. We do not yet have the cytogenic results.
Sal was diagnosed on May 6, 2013 and his original BMB had a sole abnormality of Trisomy 8, negative FLT3, negative NPM. This BMB was done in San Diego, where Sal was working at the time and where he received his induction chemo. When Sal's care was transferred to Stanford Hospital, near where we live, the slides were again reviewed. First consolidation began in July, 2nd August, 3rd September, 4th end of October to beginning of November.
Current blood work:
WBC 2.4
RBC 3.06
Hemoglobin 10.2
Hematocrit 30.3
Platelets 125
Myelocytes 1%
Our hemotologist/onc was as surprised about the results as we were. He is going to confer with the BMT doctor about next steps and begin transferring Sal's care to him. It looks like Sal may be admitted to the hospital on or about January 2 for another induction. The good news is that one of Sal's sisters is a 10/10 match.
In addition to all the medical worries, we are faced with financial stuff as well. I lost my job (due to layoffs) a month after Sal's diagnosis, the day Sal arrived home from the airport from San Diego. But you all have had to deal with this, too...
We are absolutely floored. Has anyone else relapsed so quickly after consolidation? Or heard of this?? It seems that the consolidation rounds merely kept the leukemia in check. Sal was FLT3 negative, but maybe that was an error? (Eddie, didn't they miss the FLT3 diagnosis in your case?)
Monique
Maybe this one? His onc is one of the investigators.
"S0919, A Phase II Study of Idarubicin and Ara-C in Combination With Pravastatin for Relapsed Acute Myelogenous Leukemia (AML).
RATIONALE: Drugs used in chemotherapy, such as idarubicin and cytarabine, work in different ways to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Pravastatin may stop the growth of cancer cells by blocking some of the enzymes needed for cell growth. Pravastatin may also help idarubicin and cytarabine work better by making cancer cells more sensitive to the drugs. Giving idarubicin and cytarabine together with pravastatin may kill more cancer cells. PURPOSE: This phase II trial is studying how well giving idarubicin and cytarabine together with pravastatin works in treating patients with relapsed acute myeloid leukemia."
I am really sorry to hear this news, but Sal is young and strong and will get through this. And so will you. As a caretaker it is hard to stand-by, but hang in there and all will be ok. To answer your question regarding the speed of relapse... I think it just depends - everyone is different. My dad relapsed just 2.5 months after achieving remission. He had just finished his 2nd consolidation (about 2 weeks after we learned of his relapse). He was also FLT3 negative. I looked up the clinical trial you mentioned - it looks very promising and already in Phase II. I am sure Sal is in good hands and he's lucky to have you in his corner. Stay strong. Wishing Sal smooth waters ahead. Take good care.
As for the FLT3, that's also a less favorable abnormality, which Eddie, Andrea, Planxty, me and others have. And its treatment also calls for a BMT in most all cases so you would be in the same place anyway. But some centers mix inhibitors into the equation and you should ask them to make sure he is truly FLT3 negative just in case their protocol includes inhibitors for FLT3 patients. I know they didn't catch it on Eddie's first diagnosis so it's possible they could have missed it.
It must be frustrating having to start all over again but all hope is not lost. Sal has a lot going for him in his youth, his general good health and strength, a matched sibling donor and you as his advocate. So just focus on the next phase and before you know it he'll be on his way to recovery. Take care.
Lou
I am so sorry to hear this. I too relapsed after 4 doses of consolidation chemo. I was diagnosed in Nov 2011 and finished my consolidation in April 2012, I then relapsed Oct 2012. It was devastating, I also was just returning to work and am negative for FLT3 and NPM1. I achieved complete remission again after a repeat induction. They used a different chemo protocol. It was Clofarabine and Cytarabine, I then had a BMT in Jan 2013. It is great that he already has a donor match, I was already typed so it did not take them too long to find a donor which was a blessing. It is so difficult to start treatment again though, it is like "rinse/repeat"! I am sure Sal will achieve remission again, and he will move on and do well with transplant. The financial worries are no picnic either, I wish I could just wave a wand and make them go away. " Be the Match" does give out some financial assistance for those going through transplant. Be sure to connect with the Social Worker at the transplant center, she/he will have some other ideas too. Praying that all goes well as he gets ready to kick that AML monster back into oblivion!
Take Care
Suzanne
I am so sorry to hear about Sal, but he is definitely at the right place. I have a great deal of respect for the oncology at Stanford. I was a medical student there in the late '70s and I was always impressed with the depth of their department and their ability to always stay on the cutting edge of therapy. The clinical trial sounds very promising and can only accelerate his recovery. Most regimens that the rest of us have had use anthracyclines like idarubicin. It is very effective. I am intrigued by the pravastatin. There is nothing that Sal will be receiving that is unknown and that should be very reassuring.
Please be optimistic about Sal's future. Many of us have gotten transplants, including me, and we are doing well. Sal already has a very committed donor. Who could be better than a sibling?
Who are Sal's doctors at Stanford? Interestingly, the doctor who convinced me to go to Sloan Kettering was a fellow in oncology at Stanford when I was a med student and arranged for everything for me when I was first admitted. She's typical of the type of doctors I met as a student. Compassionate, smart, and aggressive in the best sense.
Just know that we are all here to share our experiences with transplant. Sal will do well and will get the best of care. After all, he has you.
Praying for you and Sal. 2014 will be a good year.
Cliff
I'm so so sorry to hear about Sals relapse. I just had my last consolidation on 17 Nov and try not to think about relapse but of course the fear creeps in. That is great news that he has an awesome sibling match. I'm praying for you and Sal and that induction goes well.
Julie
Lori, thanks for your quick reply, for sharing your dear dad's relapse info, and for your kind words of support.
Lou, Trisomy 8 has been *mostly* listed as intermediate, but I definitely saw the possible "poor risk" categorization in a study (or two) during my many, many hours of online research. (Yes, I know, I have broken all the rules regarding online research.but I've learned a lot, too.) Onward to transplant we go!
Suzanne, thanks so much for sharing the similarities of your experiences with us. I know that you've been through so much, and I'm so glad that you are doing well. Thanks for the financial suggestions, too. I will reach out to our social worker at Stanford.
To answer your question, Cliff, Sal's hematologist/onc at Stanford is Bruno Medeiros. His BMT doc is Wen-Kai Weng. Your replies to all of our posts here on DS are always informative, empathetic, interested, compassionate, uplifting and so very supportive. You clearly had a FANTASTIC bedside manner when you were practicing medicine! While I certainly don't wish AML on anyone, I am glad that you are here with us.
Julie, I am hoping, praying, and EXPECTING that you will be fine. Thank you for your prayers.
Lori, Sal had four rounds of high dose Ara-C (cytarabine). At Stanford, consolidation is out-patient: M-W-F 7am-11am & 5pm-8:30pm or so. His last dose of chemo was November 1. Lori, I have been following Keir's treatments and hope that you find a donor and can safely move to transplant very, very soon. You are always in my prayers, as I cannot imagine how hard this all must be for a mother.
Dave, thank your for your prayers!
I hope to hear from the doctors soon with our next step. Thank you all again. I love this group so much!
-Monique
I agree with everyone here that there is no reason for you and Sal not to be very optimistic about next steps, even as you are struggling to absorb the upsetting news of his recent relapse. His "youth", the match he has with his sister, the great care he is getting at Stanford, his participation in the trial, and your immense love and support are lining up to give him the very best of outcomes. We are all here for you.
Robin
Thank you. Sal's doctors are far younger than I, so I called a classmate of mine from my Stanford days who is on faculty there. He said that both Dr. Madeiros and Weng are super-smart, young, energetic and very well-respected at Stanford. I am glad, because now I am ultra-certain that Sal will be getting the best.
Those of us who have gone through transplantation are here to answer even your most trivial questions, because when it comes to the process, the more you know, the less you will worry (that may be counter-intuitive, but it is true). Sal has already been through the rockiest of his treatments, the early ones, when it takes time to adjust to the changes that take place in one's body as a result of the therapy. He will now how to parry the new barrage.
Monique, you know that I have said this before to so many on this site...STOP COMBING THE INTERNET!! You have two compassionate and brilliant doctors. Ask THEM your questions, not your computer screen (that frequently spouts nothing but confusing half-truths). As you also know, I chose to read NOTHING related to my AML. I preferred to trust my doctors' wisdom. I asked questions constantly and even wrote up lists of queries at times, just to be economical with my doctors' busy schedules. However, I never asked about prognosis, percentages, etc. Such knowledge is just not productive. I have previously quoted Alexander Pope:
A little learning is a dangerous thing;
Drink deep, or taste not the Pierian spring:
There shallow draughts intoxicate the brain,
And drinking largely sobers us again.
You might say that if you were able to "drink deep" from the pool of AML knowledge, it might be beneficial to you and Sal. The problem is that none of us (and certainly not I) are sufficiently versed in oncology to truly understand the implications of what we read about AML in the scientific literature, except for the parts that may well frighten us or the parts that are nothing but conjecture based on small samples of patients. So let's neither drink from the shallow waters of knowledge nor from its depths when it comes to surviving this illness, both physically and especially mentally. I am not an ostrich who buries my head in the sand, but rather a pragmatist who asks what needs to be asked, avoiding any and all information that thwarts hope and optimism. Remember, Monique. AML is an eminently treatable disease in 2013, and the numerous protocols available now as primary or adjunctive therapy are testaments to the explosion in our knowledge of how to beat this horrid menace at its own game. At the risk of seeming naive, I advise, as I have advised others, that you and Sal put your blinders on, put one foot in front of the other, and march to the beat of an AML cure. Brighter days are ahead.
Cliff
First, I am sorry about this mini setback, but it also leads you in the direction of total cure. There is little I can add that has not been said here, reading through these posts yesterday and today. Those of us having been through the transplant process, no longer fear it.
I have read so much this week. One was a long article about "what I wished I knew about cancer before I got it -not sad, just factual and allowed me to refocus this week on how I have changed and those around me. How some have been able to stay with me on the path while others became uncomfortable (I get it).. The other was a statement made by Robin Roberts that my husband shared this week and that was, the past will make you depressed, the future will cause anxiety, stay in the moment for peace. I am focusing, as best possible, in the moment. I don't know where this all leads us, but I am different and I am learning to embrace the new me. I am a truer version of myself.
So, after my long windedness here, embrace the path, accept it as if you had chosen it and know we are here praying, fighting and waiting to support you both as patient and caregiver through this next step..peace, love and forever hope,
Andrea
Robin, thank you for reminding us to be optimistic! We were so shocked by the news and lost our warrior spirit for a little while.
Cliff, I am so touched that you went out of your way to ask a classmate about our doctors. It is very reassuring to hear from another professional that Sal is in good hands.
And I completely agree with "the more you know, the less you will worry." I realize that you are referring to the process, but I feel I have to know it all. It gives me the illusion of control, maybe? I want to learn everything about AML. I spent hours and hours online at the beginning, but here's why: (1) Sal was in the hospital in San Diego, about 500 miles south of our home, where I worked and took care of the children; and (2) Sal's oncologist in San Diego was incredibly tight-lipped. I mean, she told me NOTHING about AML. She would stop into Sal's room for about 3 minutes each day. Sal would put me on speaker-phone so that I could hear what was going on and be able to ask questions. (Sal was just battling at that time, he had no questions.) I received the shortest answers imaginable. And it was pulling teeth to get Sal's cytogenics out of her! For some reason, I don't think she thought it was necessary to explain anything. It always felt like she was holding back. I thought to myself, "Maybe she's not explaining things because she doesn't want to upset Sal." So I called her. There was no difference: she was very tight-lipped and rushed, no elaboration, nothing. I left the kids with my mother for a long weekend to spend it in the hospital room with Sal, and I got to see her for 2 minutes (where she informed us that she was going on a European vacation and wouldn't see Sal again before his hospital discharge). I had nowhere else to go but the internet to learn about my husband's cancer. But, over the course of a couple weeks, I learned give much less weight to all the old info out there. And also not to be scared, because there are so many encouraging new ways to fight this beast.
Andrea, I really like the statement you shared from Robin Roberts. I will definitely try to keep that with me. And thank you for reminding us that we are now on a path of total cure, and not to fear the transplant process.
Thank you all so much for your encouragement!!
xoxo Monique
Sending my prayers Sals way candles lit in Ireland for him today.
Planxty
Sadly, the way you describe the seeming lack of interest of Sal's San Diego doctor is disappointing, albeit not surprising. I just don't understand what motivates physicians today. My younger daughter is currently in med school and my son will be applying this year (he is getting his PhD in neuroscience right now). Both are incredibly compassionate and charitable people. It will kill me if the system changes them in to doctors who just don't seem to understand the way the human mind deals with disease and uncertainty. I will not make any excuses for such behavior, and have seen the same priorities in my own colleagues.
Nevertheless, there are still many caring people out there. From what I hear from my friend, you and Sal have hit upon two of them.
I completely understand why you turned to the Internet for information. However, I would advise no longer doing that. Ask you doctors and never worrying about being a pest. Good doctors understand how frightened patients and their families are. Anyone who has a modicum of kindness in him or her would be happy to answer any and all questions. Just stay away from the hypothetical negatives -- such questions are difficult to answer and simply lead you down a black hole. Not good for the soul!
Cliff