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MemberI am very hesitant to go the bone marrow route as there seldom is a second chance if it fails and often quality of life is greatly diminished for a long time afterwards. The stats, especially for those who have a secondary MDS, are very dismal. Be very careful to look at not only how many are disease free after the first and fifth years, but also how many end up with major Graft vs. Host Disease or succumb to other infections (these people often are counted in the "disease free" stats as they have no active MDS, just many other issues). With drug treatments, I have been able to keep this disease at bay and still maintain a decent quality of life. If one treatment doesn’t work, usually I have been able to try another. If a bone marrow doesn’t work, it is usually the end. I currently have 5% blasts, but they are staying at that number. This decision is only my decision, though. I know there are others out there who have followed the BMT route. I believe they would have different input. Everyone is fighting the same disease, but each of us has a different course and path to do so, and each person’s body will react differently. Praying for you as you face these tough decisions.
MemberHi Cathie,
I lost count a long time ago on how many BMB’s I have had over the past 23 years. They are rather limited as to where they can biopsy…the posterior hip seems to be the favorite. You can ask them to use the opposite hip if possible. I have also had sternal taps, but only rarely. I do get lingering hip pain near the sites and some scarring over the years, but a small price to pay to keep a good picture of where the disease is at and how treatment is going. School is in full swing here, as well as soccer, kids’ church groups, my daughter’s volunteer time at a therapeutic riding center, teaching one to drive, etc. etc. Trying to keep up on rest, and washing hands lots to avoid all the germs my students bring with them. Have a great week
MemberHi Ray,
I watched your videos…they are a good overview of this disease and would be very helpful to a newly diagnosed patient. As I have had so many transfusions over the years, I have had to resort to specific donors. This assures that my chances of reaction are minimized and blood is fresh. I also use irradiated and filtered blood. You are right when you say you must sometimes demand this. When I travel, I carry a note from my physician stating this need should I need to get transfused. I have tried to schedule in a Forum from time to time when they are closer to me, but my work schedule often gets in the way. I do keep a close eye on updates, both on this website and at the AA/MDS website. The internet has become a huge help in keeping up with new trials. Thanks.MemberHi Cathie,
I have used Exjade recently to get iron down. Currently am not on anything as transfusions have been more infrequent. My prognosis is not good, but I have long ago learned to look past the prognosis, and try to stay focused on the moment. Right now there are no trials that I qualify for beyond bone marrow transplant. Clofarabine may be an option if the blasts jump again as it was effective in the past. I have avoided the bone marrow option, and will continue to avoid it, as long as possible as the long term outlook is not good and there are so many complications inherent in the process.
My girls are 13 and 15. I also have a 17 year old son. They have grown up with this disease and are great advocates for research. You can see our team pic at http://pages.lightthenight.org/soh/Dayton09/AlwaysFriends as well as the links to our individual pages.MemberALL is acute lymphocytic leukemia. My MDS is secondary to the methotrexate used to treat the initial leukemia when I was a young adult. I have had over 250 transfusions, generally red blood cells, occasionally platelets, as those are the two blood lines that tend to decrease for me. I run a hemoglobin of 9 currently. My body has adjusted to this low over the years…I generally will be below 7.5 before I need a transfusion. I get increasing fatigue and fogginess (and what my girls refer to as TBS "terrible blood syndrome"–the extreme irritability that you described) when I am heading towards a transfusion. I have held steady since June now. I do not experience any decrease in appetite when I am low…more typically I crave carbohydrates (and caffeine)at that point as the sugar gives a quick burst of energy.
MemberStill here…back to work this week in the schools and doing okay. Just went through treatment for tick-related disease (some people collect shells in the Outer Banks; I found a tick instead). At a rather scary point of not having any good trials that I qualify for…so have a stable blast load of 5% currently, feeling quite good with minimal transfusion needs, but would like to know there are some options ready in case the blasts take off again.
MemberAs a 12 year old, your son could get his school involved in Pennies for Patients through your area Leukemia & Lymphoma Society. You may also want to look for a nearby Light the Night walk. You can find info on both at lls.org or just call your area society. The website also has info on MDS, as it is connected to leukemia and can go on to become AML. I captain a Light the Night team in Dayton, Ohio. My 2 daughters have been active fundraisers in this for 10 years now. You can see our team video at http://animoto.com/play/j8nOKDx7YfTWfnvoRo8ENA and our team web page at http://pages.lightthenight.org/soh/Dayton09/AlwaysFriends
It is good that your son wants to help.MemberFatigue is understandable. The Procrit is trying to kick the red blood cell production into over drive. It takes energy from the body to make this happen. Mild bone pain is also common. Try to eat well and give yourself extra rest while your body and the Procrit work.
LauraMemberI have gone the “no interference” route as much as possible, as my MDS is secondary to initial treatment for ALL. My docs also wanted to go the BMT route initially, but the risks seemed way too high for me as a young mom at the time. I have had periods of treatments, most recently with Clofarabine a year ago, but once the blasts stabilize below 3% and the other counts are holding, my body seems able to maintain the counts for awhile with no further treatment. This is not common for most, but works for me. I work full-time and have a family of 3 teens. My counts are monitored monthly right now.
MemberThis is a website of another Caring Bridge child who had MDS. He just completed a bone marrow transplant and is doing well and back home currently. http://www2.caringbridge.org/fl/mark/
Keep up the hope…MemberHi Terri,
I just had to share what my boss did at work. I work in the schools. This year we had a very small cost of living raise, while our administration had a much greater raise. My boss took the money he is making above and beyond the raise the rest of us got, and donated it all to charities, including $500 to our Light the Night Walk. I am so blessed to work where I do. I also have 20 or so co-workers who are walking on our team. Friends always make the journey easier.
LauraMemberHi Terri! I have fielded a Light the Night team called Always Friends for 6 years now. Last year we had 39 walkers and we raised $8000 with a special cookbook project. Over the 6 years, we have raised a bit over $17,000 through many generous sponsors. My website is http://www.active.com/donate/ltnCincin/1953_LAlwaysLTN Our walk is Sept. 28 in Dayton Ohio. Good luck on your fundraising and prayers for good weather the night of your walk.
LauraMemberJeff,
When my HGB is low, I often need a mid-day nap. My work place is wonderful about allowing this…which I suppose not all are. It allows me to get through the day. I just sleep sitting at my desk, setting my pager alarm to wake me. Often just 25 to 30 minutes is enough to shake off the worst of the fatigue.
LauraMemberI have secondary MDS after treatment for leukemia as a young adult. I have lived with MDS for many years, and have benefited from a variety of trials along the way. Revlimid was an effective drug for me. My MDS tends to cycle into transfusion needs if I get sick with ordinary ailments. I tend to stick to the least invasive treatments, along with good nutrition, exercise, and lots of prayer supporters. Currently I am transfusion independent and enjoying summer vacation (I work in the schools). Be an advocate for your own health, and enjoy each day along the way.
MemberUncertainty is one of the many emotions I struggle with when I am feeling good (my disease is currently in a “quiet state” with the blasts staying low and counts staying stable without transfusions or other treatment). It reminds me of how the Israelites might have felt crossing over the Red Sea…
Path of Certainty
Crossing through this raging river of life,
I find myself once again walking on dry ground,
A testimony to Your faithfulness and mercy.
Walls of water tower on my right and my left,
Bearing witness to the power of Your hands,
Even while my mind begins to sense fear.
What if the walls come tumbling down
Before I manage to clamber up
The riverbank so far ahead of me?
What if Your grip on these watery waves
Is suddenly loosed
And I am swept away,
Engulfed in the roiling currents again?Trust, my heart beats out with each step;
Trust in the Lord whose promises never fail.
Find joy in the journey of today,
Skipping, if you dare, over this dusty path,
Dancing in celebration of what He has done,
Singing in praise of what He will yet do.
Know that whether the path is dry land
Or whirling mud or overpowering storms,
That God will be right there with you.
His love will carry you safely,
Even when uncertainty washes over you.
So spend this time in certainty.
With a peaceful heart and unfettered step,
Know that through every circumstance of life,
He is bringing you closer to that riverbank ahead,
Waiting to welcome you home for all eternity. -
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