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.
TFD on another thread wrote: "I had read it takes about 7 years after radiation exposer for leukemia to show up." This was something I had not heard and it got me to thinking that we might want to put our heads together and see what we might all have in common. that might cause AML.
The only thing I keep hearing is that benzene exposure might do it. I would guess the first thing we need to do is to start a list of all possible causes. There must be some scientific basis for the benzene thing since it is stated in so many places as an established fact. TFD added the radiation possibility, which is in my mind a completely different animal. I have also heard that AML can be a side effect of chemo.
If benzene is a major cause, then how long does one need to be exposed to it, in what way, and how long after this exposure would it show up.
One thing that seems to be a complicating factor is the average age of AML victims. Seems to be somewhere around 70, so it would seem to me that it would be a very thin chance that all of these oldsters (I am 69) would have been exposed to it recently. It would seem like their systems just cannot handle it once they get to an older age. Could it be an accumluated thing over a lifetime. Or perhaps something that we have been exposed to on a regular basis but now that we are hitting the older ager we just cannot handle it?
Anyway -- if you are interested in this and know anything about it or just have a hunch and want to jump in, here is a forum for it.
Thanks in advance -- dave
The only thing I keep hearing is that benzene exposure might do it. I would guess the first thing we need to do is to start a list of all possible causes. There must be some scientific basis for the benzene thing since it is stated in so many places as an established fact. TFD added the radiation possibility, which is in my mind a completely different animal. I have also heard that AML can be a side effect of chemo.
If benzene is a major cause, then how long does one need to be exposed to it, in what way, and how long after this exposure would it show up.
One thing that seems to be a complicating factor is the average age of AML victims. Seems to be somewhere around 70, so it would seem to me that it would be a very thin chance that all of these oldsters (I am 69) would have been exposed to it recently. It would seem like their systems just cannot handle it once they get to an older age. Could it be an accumluated thing over a lifetime. Or perhaps something that we have been exposed to on a regular basis but now that we are hitting the older ager we just cannot handle it?
Anyway -- if you are interested in this and know anything about it or just have a hunch and want to jump in, here is a forum for it.
Thanks in advance -- dave
Ben's stomache pain was constipation
The doctor suggested, lactulose, which i guess is like the Miramax. It worked well!
Ben's back pain started after his SCT back in November, He had a 3 week hospital stay in hospital; he was mostly bed ridden. It has been an on and off issue, ever since then. He's had ultra sound, cat scan x ray and MRI to rule out any other problems.
The result of the mri was mild de generative changes and mild disc bulge at L4L5 l level
Our Nurse practicioner says she has the same thing,
Last week Ben was prescibed Tylenol 3 with codeine 300/30
He has been taking 2 at night and 2 morning around 12 hours apart. We were told to take sennotab to make sure he had no bowel issues. He never took any, hence, constipation.
Cliff I'm pushing him to drink lots, he is trying to get at least 4 500 ml water in daily, together with any other fluids. I have to admit that is a battle. Sometimes I feel like the gestapo!!
Oh! another thing happened recently, Ben says he can't taste his food, so he is just eating little amounts for the sake of nourishment. Have you any thoughts on that?
As far as the pain for the back issue.... the hospital sent Ben a physiotherapist once a week to help him.. The physio says as soon as Ben regains some muscle, his back should get stronger. We are thinking of going to a chiropractor for advice Any thoughts?.
I'll keep you informed,
thanks a million Cliff,
You are a blessing to us all,
Sandra and Ben
You suggested the gas X. It seems Ben was full of gas. He has taken a couple of the gas X and it really helps!!!
His taste buds and digestion are not the best right now, I am hoping this too will pass......
Thanks Dave....I will keep you updated on The transplant thread...
Sandra
-- dave
It's good we can look back at those moments, like your gas episode and have a good laugh.
Ben has had urticaria (hives) all his life, I learned to keep Reactine on me because it would take a while to get it from the hospital phamacy.
Have a GREAT DAY brother!
Sandra.and Ben (Nehemiah 8:10)
I always figured you were a drug addict (simethicone, that is!) LOLOL. Did your wife hide boxes inside home-made cakes???
The gas issue seems universal. I think it might be multifactorial. First of all, almost all of us have had antibiotics in the course of our treatments. That can really change the flora of the bowel. Secondly, the bowel suffers along with the hair follicles and the blasts and takes a while to recover. Put some stresses on the small bowel, like digesting fats, milk sugars etc., and voil, you have gas. Simethicone is the drug of choice, no matter what name it goes under. CVS, Walgreens etc., Walmart and Costco carry much cheaper versions of Gas-Ex.
Sandra,
I am glad that Ben's belly issues have been taken care of. I generally recommend Miralax over lactulose for 2 reasons: First, it has no taste and you can mix it into ANY beverage, even coffee. Second, you can take it daily if needed without any issues. Lactulose is an osmotic agent which draws fluid into the gut. Not infrequently, you can overshoot with lactulose, turning C into D.
With regard to the sense of taste, I can only speak for my own experience. Following my transplant, even when the throat sores resolved, my sense of taste was so incredibly altered that I could only eat eggs, and, believe it or not, grapefruits. I still liked coffee. I could not tolerate anything else, especially tomato sauce, my favorite, diet Pepsi, or just about anything. It was very hard for me to eat anything and everything tested horrendous. It took over 6 months for my taste to really recover. I thought that would never happen, but it did...finally. Then I went back to my voracious eating habits. I think Ben is drinking enough. Try different foods on him and see what he likes. Then just give him foods that are nutritious as possible, but that also have a tolerable taste. From my discussions with Phil, who is also rounding the corner with regard to post-transplant days, it seems as if he has not had an alteration in his taste perception. So, I guess it varies. I was more like Ben in that regard.
The muscle thing is definitely true. IT WILL COME BACK, even with simply performing the usual day's activities. I also have and L4,5 disc problem. It was bad on the right for a long time, and I almost had surgery. I just upped my crunches in the gym and things improved. Lately, I have been having pain on the left side, which was so bad a few days ago that I took 2 Advil twice a day for a few days. That is below the therapeutic dose (which should be at least 2 pills 3 to 4 x a day. I am afraid to take NSAIDS, however, because my kidney function has been a bit compromised by my treatment and NSAIDS should be avoided by people with reduced renal function. I took it anyway, because I did not want to start taking codeine or other narcotics. If his doctor has no objections to it, I would give him Advil 400mg 3x to 4x a day with food each time. Let me know how things go.
Love to all,
Cliff