Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
Mike..dear Mike, it is great to hear from you. You did have all of us worried.
I am going on my journey tomorrow. I started a blog...
sandramdsadventuresblogstop.com
(sandra mds adventures blog stop . com) go to the browser and don't google it.
I will keep you posted on there. Let me know if you have any trouble
my e mail address is: sgroes1308@comcast.net
http://www.sandramdsadventures.blogspot.com/
You are in my thoughts and prayers, dear friend, Hugs!
If you have several options available, you are probably overwhelmed with wondering which way you will need to go, not to mention the biggie--will it work?
We are pulling for you, girl, so don't give up the fight. Once the docs have a treatment plan that produces results for you, you might look back at this time as a low spot.
Mike, I said before that we are darned relieved to know you've just been busy. You live in Garland, right? I was trying to figure a way to reach you (my daughter lives there, & so does MotorcycleGma). Wouldn't hurt to post your email if you're going to be out of action for any length of time.
And now our Sandra goes on her adventure. Thanks, BJ, for clearing up the web address. I just checked & there's nothing going just yet.
Had my grandbaby fix Fri, better than meds! It had been four months since we last visited.
I'm on my third round of antibiotics for this awful bronchitis. The good news is that it's working. The bad news is that it's working. My tummy hates the stuff! I'm taking acidophilus, too, but have had to resort to taking the doses with some food. Sharon
P.S. My email is birdmom@sti.net
Cat, I am sorry to hear of your troubles. I was feeling very sorry for myself today. I have played tennis on teams and leagues for over 35 years and today was my last day. I had an injury to my knee and also arthritis since last May. I tried to play today and between the knee and shortness of breath and no stamina (from the MDS?) I decided to give it up since I could not play to my usual ability. Not fair to the other girls playing with me. But considering what you've been going through, my pity party seems kind of lame. Hope they come up with a good treatment for you soon. Sandy
If you look back through my posts you'll see that 3 1/2 yrs ago when I was diagnosed it was originally Leukimia and the doc said I had three hours to get to the hospital. He He I told him it took them two weeks to get the lab results for something I had for some time it could wait a couple of days. My oncologist had been studying my history and diagnosed me with MDS. Lesson don't be afraid of getting second opinions. Do all you can to be an informed patient and go in with questions written down about the disease, the treatments they are suggesting including success rates vs risks, side effects, etc.. My doc and I have an understanding about quality of life being a major consideration in my decisions.
I get copies of all my lab reports and ocasionally summaries of my med records. Example I was able this week to look back to see that my blood levels today are in the same range as last year at this time. Not going up like we want but hanging in there. Being informed and having your oncologist involved in decisions gives you the ammunition when docs look at a lab report and panic at your low counts to explain to them that for you this is normal. I had one doctor who insisted on giving me neupogen to increase my WBC count. I insisted he check with the oncologist first which he wouldn't do but when I called my doc told me to stay away from it at all costs as it would also raise my blast count and put me in full Leukemia.
It's not easy stuff to have but it's not without hope either. There are folks in remisssion, new treatments coming along, folks are hangin in there much longer with this junk than they used to. Life is still good even with the various side effects of MDS and the treatments. Along with all that you have a fantastic group out here of folks that are in various stages of this stuff, who can help you, talk with you, and listen from knowing what's going on. There is a lot of gooooood love in here too. Anyone that can put up with me has to be all right and they have been doing that for some time now LOL>
Keep your hand in the Lords as you go along. There is not a valley He won't light up for you or a mountain He won't pull or carry you over. And He's been putting up with me for 47 years now....imagine that.
Keep us posted please.
Mike
Sorry I do get a bit long winded at times too :-)
I do have every CBC test I have had and also have made a copy on my computer. I LOL am a very controlling person. I want to know everything and won't let anyone not tell me exactly what is going on. I have a MDS specialist too. In one of my post I explained I was diagnosed in Nov 2011 and told at that time I am at the high end of MDS after having 2 BMB's. I also can't have shots of neupogen, same reason as you. I was told that without a Stem Cell transplant I only had 1 to 2 years with treatment. I not only have high MDS I am missing the 5q in my DNA sequence but I also have extra DNA sequences which is causing major problems. So okay enough with that....
I have great news two things as a matter of fact. My insurance will pay for a transplant. Be the Match have found 3 number 10 matches for me. So once I am in remission I have 3 donors waiting in the back ground. I can't tell you how wonderful that makes me feel. HOPEFUL HOPEFUL...
Life is good and it is a great new year.
Love to all
Cat
Cat
Cat
My own disease has progressed that treatment will begin in the next couple weeks. Thinking positive that the VIDAZA will work but won't know until the end of 4 cycles. We did talk about BMT but that doesn't appear to be an option.
Taking one day at a time and enjoying it while I can.
Stay well everyone. Hugs!
If you don't know about it is a wonderful site where you can post how you are doing for family and friends near and far. It is a great way to tell everyone and not have to repeat your story over and over again. I have been on it since the beginning of my diagnoses. I am under catjohnson. I hope Sandra doesn't mind me give out this information. You can find her under the name sandragroesbeck all one word. No spacing.
You can leave messages here for her and read her journal.
I know she is starting the chemo so she hasn't posted anything in the past couple of days. I hope she is feel okay.
Cat
Cat hopeful is the key word. I'm glad to here about your insurance that is great. Every day they come up with different things. The article I passed along talks about how stem cells used to be a 1 in five chance of finding a match and today using umbilical cord cells they are finding matches for 3 out of 5 and where it used to be for the children only they have found a way to double up and be able to use for us bigger folks.
Becky and really everyone we all the negatives and potential outcomes on our minds with this stuff and those things are certainly real but I've found that when I turn the ole brain to other more positive things of which there are many more then life, even with the side effects and differences is still very good and that takes it a puts it on my terms.
Everyone hang in there and have a great week. Like my grand kids and I say .....We got this.
God Bless,
Mike
Cat