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.
Hello AML team,
I am reporting back as ordered, and since I do not have a support group on daily strength, I hope that the AML team will officially allow for me to become part of this group, to be supported and to support in return.
Some of you know that my journey began with a trip to the ER in December of 2014. My WBC were at 22000 and my AEC (Absolute Eosinophil Count) around 14000.
I reached out to all of you in January as we began the process of diagnosis. We learned it was not AML after my first bone marrow biopsy but was diagnosed with Myeologeneous Hypereosinophilic Syndrome/Chronic Eosinophilic Leukemia (M-HES/CEL) in early February.
I promised everyone to check in as things moved forward, so here I am.
Since my first bone marrow biopsy in January, I was sent from Walter Reed to the National Institutes of Health where my Doctors tried everything to see what might work on me. Prednisone, Imatinib and Interferon have all failed. Additionally, MRIs have revealed that I also have probable Multiple sclerosis, with lesions on my brain in the right spots, a couple of other lesions on my spine and oligoclonal bands in my spinal column after a spinal tap. No blasts or immature white cells in my CSF, so they are confident that the lesions are not leukemic in origin. It appears to be a case of a very rare disease on top of a pretty rare disease that are independent from each other.
So, where we are now is headed to a BMT. Unlike the nasty leukemia that you all have, M-HES/CEL generally causes problems with either blood clots (eosinophils are sticky and blood thinners don't work) or organ damage (specifically heart valve and pulmonary). Since they cannot get the eosinophilia under control, BMT is the only viable option.
I am still active duty Navy, currently stationed at the Pentagon. The Navy has put me on LIMDU (Limited Duty) and is transferring me to Stanford University Hospital for BMT. I had a remarkable 53 initial 10 of 10 matches and they are narrowing down for the best match. Current plan is for BMT in late June or early July.
Even more remarkable is that my neurologists have said that the BMT, when successful, will likely cure my leukemia AND the multiple sclerosis. Normally MS is not treated with BMT given risks, but in certain extreme cases, it is.
If you all think that there is a more appropriate support group for me, please let me know. Otherwise, I would like to be part of this group as we all tackle the challenges of leukemia, regardless of the specific variety.
V.r
John
I am reporting back as ordered, and since I do not have a support group on daily strength, I hope that the AML team will officially allow for me to become part of this group, to be supported and to support in return.
Some of you know that my journey began with a trip to the ER in December of 2014. My WBC were at 22000 and my AEC (Absolute Eosinophil Count) around 14000.
I reached out to all of you in January as we began the process of diagnosis. We learned it was not AML after my first bone marrow biopsy but was diagnosed with Myeologeneous Hypereosinophilic Syndrome/Chronic Eosinophilic Leukemia (M-HES/CEL) in early February.
I promised everyone to check in as things moved forward, so here I am.
Since my first bone marrow biopsy in January, I was sent from Walter Reed to the National Institutes of Health where my Doctors tried everything to see what might work on me. Prednisone, Imatinib and Interferon have all failed. Additionally, MRIs have revealed that I also have probable Multiple sclerosis, with lesions on my brain in the right spots, a couple of other lesions on my spine and oligoclonal bands in my spinal column after a spinal tap. No blasts or immature white cells in my CSF, so they are confident that the lesions are not leukemic in origin. It appears to be a case of a very rare disease on top of a pretty rare disease that are independent from each other.
So, where we are now is headed to a BMT. Unlike the nasty leukemia that you all have, M-HES/CEL generally causes problems with either blood clots (eosinophils are sticky and blood thinners don't work) or organ damage (specifically heart valve and pulmonary). Since they cannot get the eosinophilia under control, BMT is the only viable option.
I am still active duty Navy, currently stationed at the Pentagon. The Navy has put me on LIMDU (Limited Duty) and is transferring me to Stanford University Hospital for BMT. I had a remarkable 53 initial 10 of 10 matches and they are narrowing down for the best match. Current plan is for BMT in late June or early July.
Even more remarkable is that my neurologists have said that the BMT, when successful, will likely cure my leukemia AND the multiple sclerosis. Normally MS is not treated with BMT given risks, but in certain extreme cases, it is.
If you all think that there is a more appropriate support group for me, please let me know. Otherwise, I would like to be part of this group as we all tackle the challenges of leukemia, regardless of the specific variety.
V.r
John
I hate to say welcome aboard as the entry fee here is high, but welcome aboard. And with Memorial Day Weekend coming, thank you for your service to our country. You should get a really good match with 53 to choose from. My oldest brother was my donor for my transplant. The better the match, the less risk with graft vs host.
It looks like you have a nice family to support and care for you, post transplant. That is huge plus. There is a great group of patients, caregivers, and parents/siblings here, you would be hard pressed to find better. I'll be praying for a successful transplant and your cure. Again, welcome.
DaveJ
My husband was also treated at Walter Reed (he is active duty AF). I'm so sorry for your diagnosis (I have never heard of this type of Leukemia). He did not go the BMT route so I can't give you much insight there. He has been in remission for 2 1/2 years now and is still active duty. He guesses they still have some use for him :) He was inpatient for 5 months so he basically did not work that entire time (and we had been stationed overseas at the time of diagnosis). It is great news that you have so many matches. Best of luck with your BMT! We met a couple of folks (when we were there) that had their induction at Walter Reed and BMT at John Hopkins and the one I stay in touch with is still doing great and still in remission.
:) Julie
Such great news to have 53 matches and the chance for cure of MS-amazing. You have an amazing attitude that shines through your posts. This group is so supportive. You have never left my family's prayer list from your initial inquiries in January. BTW, it looks like you have three daughters? Me too!
Blessings,
the other Julie
Just tuning in. The whole scenario is so interesting. I had only 3 matches, so your 53 is astounding and you should get an amazing match.
I went to Stanford for medical school and it is a really great place that has always been at the forefront of hematology/oncology. Will be praying for you in the meantime.
Cliff
I speak for all here and am sure I am not out of line to say we really want to follow your case. Please keep us and ask what questions you can. Cliff is an MD and all of us have AML experience -- about half (I am thinking maybe 70%) have had transplants -- so I think they can help, especially if GvHD becomes a problem. And for sure, we will all be praying for you. -- daveB
Appreciate the replies and apologize for the delay in response. Things are crazy here as we plan to move on short notice across the country.
The Navy isn't bad logistically when a PCS (permanent change of station) is "normal", but when things are abnormal, stuff breaks down. Just trying to keep lots of plates in the air while still keeping up with medical demands.
Movers coming on 2-4 June, we leave on 5 June to drive across the country and arrive no later than 15 June. Will stop and see some friends and family along the way
I have to get another bone marrow biopsy (#3) at Stanford as well as getting my port put in. Also a whole bunch more organ function tests.
If anyone has info on the transplant in general, the surgery for the port or any other advice, I am all ears. Would love to hear all of your advice.
Julie, your comment about three daughters made my wife laugh. I have two daughters. The woman in the blue dress is Cathy, my lovely wife. The two little blondes, Morgan and Sophia, are my daughters. My mom is in a black dress. This was taken on a disney cruise last year.
Thank you to everyone for letting me join this group. I look forward to hearing all of your stories and to help in any way I can. I mainly know of Julie's story the most. I was happy to see platelets are still going up nicely. :)
Hope all is well with everyone. Praying every night and amazed how our list has grown over the months. It seems that once you have cancer, your eyes are opened to everyone else that is suffering.
I can give a brief summary of my story, different from yours but the path to cure looks to be similar.
I was dx on 7-27-13 with AML. (52 year old) It took an emergency room visit to come up with the diagnosis. I was admitted that day and started chemo the next. My transplant doc later told me that I was probably a few days from death. I went into remission after the induction chemo and with Gods grace have stayed that way since. I had 3 rounds of consolidation chemo after the induction and before my transplant. In that time period my genetic testing results came back as positive for the Flt3 mutation, so like you, my only chance for cure was a stem cell transplant. My 3 brothers were tested and my oldest brother was my perfect match.
I was admitted to Karmanos Cancer Center in Detroit on 12-20-13 to start the chemo for transplant. I started on the Busulfan and Fludarabine chemo on the 21st, did that for 4 days. 5th day was Fludarabine only. 6th day was rest. I received the transplant on 12-27-13 (exactly 6 months post dx). I was released from the Hospital on 1- I6-14. I am now 17 months post transplant and doing well. I did have and continue to have some complications with GVHD (dry eyes, mouth and occasional nausea) but it is not something that I can't live with. I am very, very blessed to be here and alive. If not for the prayers and support of literally hundreds of people (this group included) that would not be the case.
As far as advice on surgery and transplant:
The surgery for your port is really no big deal. I was awake through the whole thing and it took 20 minutes max. May have been sore some afterwards but I really don't remember it if I was. For transplant they did not use my port though, they installed the hickman tubes in my chest. That surgery I was under for. But again, it was only a few minutes, they did it the day before I was admitted to the transplant floor.
For the transplant my biggest struggle was eating and the Mucus (cant remember the name for it) in my mouth. But you have to make yourself eat, it is the only way to gain strength and recover form the aggressive chemo that you just went through. And make yourself walk the the laps around floor. You will want to go in well fed, because you will struggle with eating for a while, my taste didn't return for at least 8 months, but I think I am the exception to the rule there, most recover before that.
Exercise, (mainly cycling) has been a huge part of my recovery, physically and mentally. I really didn't experience the extreme fatigue that a lot of transplant patients do.
If you have any specific questions let me know, I will do my best to answer, but I'm sure if I cant answer it, others here will be able too. Your age is a big advantage for a favorable outcome, along with the amazing 53 matches that you have. That is the most matches I have ever heard anyone have. Good luck John, I will be praying for you.
DaveJ
You are in our prayers. Have a safe trip to Stanford. My son had the choice of Stanford or UC Davis and he choose UCD because it was closer to Reno where he is doing his residency.
The port surgery was no big deal (according to him) he is now 34 but was 33 when he got his SCT and has been doing well. He had slow count recovery after getting out of the hospital but has been low normal for about a month now.
I say follow your doctors orders to the T and do everything that the others have suggested here and you will do fine. Just remember to take everything one day at a time.
Hugs and prayers.
Karen