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.
Would MDS show up on a normal blood test or would you have to be specifically checking for that for it to be noticed?
I ask because while talking to my mother recently she told us something neither my sister nor I had known. My sister Jo was born severely anemic. I knew that as a teenager she had to take iron pills because she was anemic but I hadn't know she was anemic at birth. So, could she have had MDS all this time and it was never diagnosed and now it developed into the AML?
The doctor she worked for would do routine labs on them once a year just as a perk for them. Things like CBC, cholesterol, etc., and she had those for the past 15 years so I was wondering if it would have shown up in those labs or would they have had to be looking for it. This is actually how they found my sister's leukemia in the first place. She thought she had the flu so the doctor she worked for ran her yearly lab work early and something hinky showed up in the lab work so they did more testing and found it. Would MDS make the CBC abnormal also?
Her MDA doctor has never mentioned MDS but it makes me wonder about it since they are making her do the maintenance decitabine chemo for so long.
I ask because while talking to my mother recently she told us something neither my sister nor I had known. My sister Jo was born severely anemic. I knew that as a teenager she had to take iron pills because she was anemic but I hadn't know she was anemic at birth. So, could she have had MDS all this time and it was never diagnosed and now it developed into the AML?
The doctor she worked for would do routine labs on them once a year just as a perk for them. Things like CBC, cholesterol, etc., and she had those for the past 15 years so I was wondering if it would have shown up in those labs or would they have had to be looking for it. This is actually how they found my sister's leukemia in the first place. She thought she had the flu so the doctor she worked for ran her yearly lab work early and something hinky showed up in the lab work so they did more testing and found it. Would MDS make the CBC abnormal also?
Her MDA doctor has never mentioned MDS but it makes me wonder about it since they are making her do the maintenance decitabine chemo for so long.
This post is so intriguing to me it seems Jo and I have another thing in common beyond inversion 16. I don't have the ability to discuss this with my mother as she passed away five years ago. However, she often referenced that I had blood However when I was born and almost to have my"blood changed" I was a very healthy child and was never anemic. I never really thought about it until I was dxd. My oldest brother was 17 when I was born and claims I had blood transfusion after birth. Very strange and makes me wonder.
Relative to MDS I believe it is detected relatively easy. 1/3 of Mds patience turn into aml. I am confident that the experts at mda would know if Jos aml started as mds. I know Jo does not ask questions of jet med team but I sure would want to know the answer to this question polls the flt 3 question. You are such a great sister.
Praying for Jo
Julie
How is Jo doing otherwise?
DaveJ
The only thing I can think is the doctor tells her just what she needs to know in order not to stress her too much. I look at the reports but I don't really discuss them with her.
She is doing fine right now other than her last couple of BMB's showing some cells misbehaving but so far they are not turning into AML so I guess that is good.
I would love to go to her next doctor's visit on the 23rd and ask these questions but I don't think she wants to know so I wouldn't be able to ask anyway. I try to let her deal with it her way, however she can handle it, so I ask you guys instead. Thanks for the info :)
Julie, if you know what hospital you where born at, you should be able to request your records to see exactly what happened at your birth. Just a thought. Thanks again guys!
Debbie
But let's back up -- MDS in and of itself just means that your blood cells are mis-shapd -- disshaped/displasia -- weird shapes when they should all look like nice little things. This can be seen under a microscope but it is not the standard thing the do on a CBT -- it takes extra effort.
So what? Well, seems MDS is a precursor to AML. My first onc told me that since my AML was caused by MDS and MDS is incurable, I might as well give it up. Fortunately my son found me another doctorr and six years later I am still here (MDS and all). I do not worry about it, but that does not do your sister any good.
Another marker -- they usually do not say someone has AML until their blast count gets above 25% or so -- kind of an arbtrary things - they call it MDS when it is under 20%. That may have changed because the whole things does not relate. MDS is just mis-shaped blood cells and a lot of people never ever get it DXed -- they go thru life with it and never know it because it never gets to be AML. Julie said it was 1/3 that turns into AML, so there are 2/3 that do not. Another reason not to be that awfully concerned about MDS.
As for the anemia -- perhaps that signaled and early problem that ultimately enabled leukemia to get a foothold into her DNA. With most people it is a combination of such vulnerabilities combined with just plain old chance. I have heard it said that if we were to live long enough -- maybe to 125 or 150, we would ALL get cancer of some kind just from puree luck. Recognize that our cells are getting bombarded by millions of attacks every day which the body in it God-given marvelous way heals. It is when the abnormality gets to keeping the cell's death chrmosome from working that the bad cells refuse to die and cause cancer. Amazing that too much immortality caused death -- paradoxical.
Here is a rundown of it to those who want to bet into it deeper:
http://www.biblethought.net/cancer-and-evolution.html
I hope this helps -- the vibes I am getting is that your onc is not that optimistic about a permanent remission and wants to keep from alarming Jo -- seeing how much she worries, this might not be a bad approach, although being quite positive with good news would seem to me to be the best approach. -- daveB
has no chance of ever evolving into AML?
Based on the link above at cancer.org there are 7 different subtypes of Mds similar to aml and that can determine prognosis and need for sct.
I know this was the cancer Robin Roberts got as a result of treatment from breast cancer. She recieved a sct. Usually aml from mds requires a sct like Jeremy worried mom's son.
Your situation with Jo is so challenging. Based on all the lab reports you have so thoroughly reviewed it seems that Jo had MDS that evolved to AML Inversion 16 with the FLT IDK mutation. To be honest, thus actually makes her treatment at MDA seem more reasonable.
Remember when we first met and realized Jo and I both had Inversion 16 and I was so confused as to why Jo was receiving so much more and different chemo. Knowing the additional issues this makes sense. It is interesting that although Jo was getting yearly CBC her MDS was bit discovered. I do know of several that both were I'd at the same time.
Maybe Jo had been told this info but has blocked it out. I meet many who know what M they are like we are M4 but nothing further.
You are such a great sister. I understand your desire to know more and only you know how to balance this with your sister.
Praying for wisdom for you
Julie
Jeremy was diagnosed with AML & MDS and after t
Inductiob and consolidation received a SCT. I am happy to say that almost 13 months after his SCT his blood test and BMB show no sign of AML or MDS, but his doctor had put him on one of the MDS drugs to prevent relapse.
If Jo has MDS this is probably why they have her on the extended treatments as MDS drugs are chemo and are usually given (iv) or taken (pill) for a specific number of days every so many days (each case is different).
There is a great facebook group for MDS and also specific discussions on the blood marrow website as it is a type of marrow failure.
I hope this helps Debbie. I can always connect you with Jeremy if you want to talk to him about his treatment, he has a very positive outlook on it..
Hugs and prayers
Karen
I just worry too much I guess. She is doing well health wise right now. I just need to concentrate on that! I just can't wait to see her back healthy and stronger again.
Debbie