Another first!
Earlier in the year I mentioned the fact that I took the First Connection training from the Leukemia and Lymphoma Society to serve as a sounding board for those who are currently going through what I have undergone during the past (almost) two years. Basically, you relate your experience without offering any suggestions - I am not a doctor.
In any case, I was asked to call a woman in Arizona who was diagnosed with AML back in April and was informed that having a bone marrow transplant would make her very sick. When I asked her what was said, she said that her doctor told her that a bone marrow transplant would be 100 times worde than the chemptherapy! What a lot of balderdash - who knows what the affect will be? Nobody! And, because of that, the woman is reluctant to even consider the option. What a surprise!
Admittedly, she was extremely exhausted during the initial chemptherapy phase - which I was not. So, maybe she will have more problems - then again, maybe not! To be honest with you, being restricted to only being able to relate your own story does not seem to offer much to someone who is still somewhat early down the path and looking for direction. But, it's certainly understandable why you can't offer much more - you are not qualified to do so!
How was it left? She said that her doctor would pursue finging a donor(which is always of concern) and, if one is found, she can then decide what to do. I am the second person that she has spoken to and the other person had a positive experience with the transplant as well.
Speaking of that. The myriad eye drops and ointments do seem to help but I am forever dropping something into me eyes.
It's a wonder that I can see at all...
Bobb
September 9, 2010 11:35 PM
Like swimming under water all the time!
I'm constantly taking eye drops or ointment such that my eyes always seem to be full of something. Today I had to go back to Boston to get the serum based eye drops as it could not be shipped and it needs to be refrigerated. I also got another prescription that had to be ordered by my local pharmacy. So, now I take one set of eye drops twice a day, another one four times a day, a third one every two hours, and the ointment just before going to bed. It seems like I'm always putting something in my eyes. The twice a day drops will end in two weeks and we'll see what happens with the others after that.
However, if there is any consolation, there was another gentleman picking up his serum based eye drops along with me and he has to take his every one to two hours! I guess that I am not as needy as he is.
The pharmacist at Mass Eye and Ear said that the serum based drops usually do the trick but that it can take some time before you actually see results - from one to six months. The supply I got today is for three months. I'll have to go back at the end of November to get my blood drawn again for the next batch. It was interesting, yesterday, when they said that they would have to draw my blood for the drops. It didn't phase me in the east. When this all started, I would have cringed at the thought. However, I've had my blood drawn so many times over the past 19 months that I feel like a vampire test dummy at times.
So, does all this stuff work? It does work but for a limited time. Initial treatment makes the discomfort go away but after an hour or two - it returns. At this juncture, that's to be expected but it's nice to get some relief which is quickly restored when I apply a new dose of drops.
As I said yesterday, it's a small inconvenience in the grand scheme of things...
Bob
I'm constantly taking eye drops or ointment such that my eyes always seem to be full of something. Today I had to go back to Boston to get the serum based eye drops as it could not be shipped and it needs to be refrigerated. I also got another prescription that had to be ordered by my local pharmacy. So, now I take one set of eye drops twice a day, another one four times a day, a third one every two hours, and the ointment just before going to bed. It seems like I'm always putting something in my eyes. The twice a day drops will end in two weeks and we'll see what happens with the others after that.
However, if there is any consolation, there was another gentleman picking up his serum based eye drops along with me and he has to take his every one to two hours! I guess that I am not as needy as he is.
The pharmacist at Mass Eye and Ear said that the serum based drops usually do the trick but that it can take some time before you actually see results - from one to six months. The supply I got today is for three months. I'll have to go back at the end of November to get my blood drawn again for the next batch. It was interesting, yesterday, when they said that they would have to draw my blood for the drops. It didn't phase me in the east. When this all started, I would have cringed at the thought. However, I've had my blood drawn so many times over the past 19 months that I feel like a vampire test dummy at times.
So, does all this stuff work? It does work but for a limited time. Initial treatment makes the discomfort go away but after an hour or two - it returns. At this juncture, that's to be expected but it's nice to get some relief which is quickly restored when I apply a new dose of drops.
As I said yesterday, it's a small inconvenience in the grand scheme of things...
Bob
September 8, 2010 10:15 PM
A rather intersting day at Mass Eye and Ear!
Of course, they start you off with a full series of diagnostic tests to ascertain what your status is. My status- moderate to severe dry eye! Is this really bad? In their eyes it means that an agreesive treatment program needs to be put in place to bring it under control.
One reason for my thinking that things seemed to be improving somewhat with the new medication is that the body tries to defend itself by modifying nerve endings so that the pain goes away. This sounds serious but, with treatment, the body starts to rejuvenate them again. In any case, the situation does NOT lead to permanent eye damage such that you cannot see.
Now, what's the treatment plan? Mostly ointments and drops. I now have more eye drops and oitments that I am taking than I never knew existed. And some of this is rather interesting. One of the eye drops is my own blood serum! That's right~ Thwy draw your blood, spin out the cells, and save the serum to be used as eye drops! In this case, it's not my blood - just the blood that I am currently using. So I am to take eye drops periodically during the day and an ointment at bedtime which renders me permanently in blurry land until morning.
But the treatment doesn't stop there! I learned something new today. Your tear ducts are not for manufacturing tears but for drainming them! Since I am still making tears)but at a reduced rate), they plugged up all four of my tear ducts so as to maintain my tears as long as possible.
Now, what happens to the plugs over time? They will gradualy work themselves out but it could be days, weeks, months, even years before they are finally gone.
But it is really good news. The situation is treatable and is a somewhat common side effect of graft vs host disease. But, I will gratefully accept the inconvenience that I am currently facing over the possible end result of not having the bone marrow transplant.
But there is much better news. While we were there, we carried around my Dana-Farber medical records that had been faxed over and they said that everything else was perfect! So I don't currently have to worry about any leukemia at this point.
In life, you take the cards that you have been dealt and you play them the best way that you can.
I am winning...
Bob
Of course, they start you off with a full series of diagnostic tests to ascertain what your status is. My status- moderate to severe dry eye! Is this really bad? In their eyes it means that an agreesive treatment program needs to be put in place to bring it under control.
One reason for my thinking that things seemed to be improving somewhat with the new medication is that the body tries to defend itself by modifying nerve endings so that the pain goes away. This sounds serious but, with treatment, the body starts to rejuvenate them again. In any case, the situation does NOT lead to permanent eye damage such that you cannot see.
Now, what's the treatment plan? Mostly ointments and drops. I now have more eye drops and oitments that I am taking than I never knew existed. And some of this is rather interesting. One of the eye drops is my own blood serum! That's right~ Thwy draw your blood, spin out the cells, and save the serum to be used as eye drops! In this case, it's not my blood - just the blood that I am currently using. So I am to take eye drops periodically during the day and an ointment at bedtime which renders me permanently in blurry land until morning.
But the treatment doesn't stop there! I learned something new today. Your tear ducts are not for manufacturing tears but for drainming them! Since I am still making tears)but at a reduced rate), they plugged up all four of my tear ducts so as to maintain my tears as long as possible.
Now, what happens to the plugs over time? They will gradualy work themselves out but it could be days, weeks, months, even years before they are finally gone.
But it is really good news. The situation is treatable and is a somewhat common side effect of graft vs host disease. But, I will gratefully accept the inconvenience that I am currently facing over the possible end result of not having the bone marrow transplant.
But there is much better news. While we were there, we carried around my Dana-Farber medical records that had been faxed over and they said that everything else was perfect! So I don't currently have to worry about any leukemia at this point.
In life, you take the cards that you have been dealt and you play them the best way that you can.
I am winning...
Bob
September 8, 2010 11:40 PM
Off to see the eye doctor tomorrow!
I have no idea what he is going to do but we'll stick with the game plan. My eyes seem to be improving but I'm certainly not all the way back. Not much else to say about this until after the appointment.
A busy day for me now that I've resumed working on my basement project. It's a great way to occupy my time.
I'll be back tomorrow night when I really have something to report...
Bob
I have no idea what he is going to do but we'll stick with the game plan. My eyes seem to be improving but I'm certainly not all the way back. Not much else to say about this until after the appointment.
A busy day for me now that I've resumed working on my basement project. It's a great way to occupy my time.
I'll be back tomorrow night when I really have something to report...
Bob
September 6, 2010 11:59 PM
Getting back to "normal"!
Now tha Labor Day has come and gone, the fall season begins with its attendent set of activities ramping up. This week is another meeting at the Currier, choir practice begins anew, I have the doctor's appointment on Wednesday, next Monday my leukemia support group reconvenes, bridge begins for our couples group, the men's group, and our condo association group, etc.
Life gets really busy once again and that's great.
After I kind of finish off my projects at home, I'm still going to be looking for 1 or 2 more things to do. Sitting home all day long doing nothing is not an option that appeals to me.
This past weekend has been the last hurrah for the summer and it was so-so weatherwise - very windy and cool. But, fall is just around the corner and I guess that we can't expect much else from the weather even though tomorrow is supposed to be in the upper 80's.
At this point, anything I do is better that what the alternative might have been...
Bob
Now tha Labor Day has come and gone, the fall season begins with its attendent set of activities ramping up. This week is another meeting at the Currier, choir practice begins anew, I have the doctor's appointment on Wednesday, next Monday my leukemia support group reconvenes, bridge begins for our couples group, the men's group, and our condo association group, etc.
Life gets really busy once again and that's great.
After I kind of finish off my projects at home, I'm still going to be looking for 1 or 2 more things to do. Sitting home all day long doing nothing is not an option that appeals to me.
This past weekend has been the last hurrah for the summer and it was so-so weatherwise - very windy and cool. But, fall is just around the corner and I guess that we can't expect much else from the weather even though tomorrow is supposed to be in the upper 80's.
At this point, anything I do is better that what the alternative might have been...
Bob
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