[Zoe]

Birgit,

Thank you for the clarification. It sounds like the process in Germany is similar to the one here in the US. I had been surprised to hear the previous info, as I have a copy of a journal article done on MDS patients under age 50 (the largest study ever done when it was written a few years back). The study was conducted in (forgive my spelling) Dusseldorf. It did say that low and intermediate patients had a survival rate of 86% at 20 years (no transplant). I would be interested to see how this compares to the US.

When you say Germany has a high standard in your SCT programs, what do you mean? Patient qualifications? General expectations?

I always appreciate hearing about research and stats from other countries.

Zoe

[Zoe]

Gene,

Yeah, I do know! I keep holding on for some type of health care reform. My insurance premiums went up 25% this last fiscal year. I am scrambling to keep enough money to pay the premiums. God forbid I lose my insurance. I just keep holding on. We should write a song, Holding on, holding on with MDS. OK, I am exhausted, had a stressful day, and am being dorfy, so I am signing off :^)

Zoe

[Zoe]

Sounds like you learned a lot!

Quote: I learned how in Germany they are miles ahead of us here in the states in the was they run their Transplant program. MDS patients are urged to register early as soon as they are diagnosed and they believe that, since that is still the only "cure" for the condition that a transplant should happen as soon as possible as the patient is likely never stronger later.

Very interesting. Is this for all patients? Even 5q-? My hemo says 5q are basically watch and wait with some Aranesp, Revlimid and transfusions thrown in. My last hgb jumped up to 10.5! That is with Aranesp. I am starting a new counseling business, and I spent the day moving into a new office, so I was really grateful for the 10.5

Zoe

[Zoe]

Ramey,

It is good your cytogenics are fine. As for some questions: I would clarify the blast count. Is it 14% or 1.2%? Anything under 5 is nothing with MDS. I don’t know what it is in non-MDS people. My guess is your blast count is 14% since you are intermediate 1. It sounds like the doctor wants to have potential family donors lined up if needed down the road, but s/he doesn’t see the need for it at the moment. I would be wondering what they are looking for in making that decision. Do you know what your blood counts are? I always get copies of all reports. It is easier to look it over at home, do some on-line research, then when I go back to the hemo my questions are more focused. Also, it is good to know if you have low neutrophils as this can make a difference in your body’s ability to fight disease. If your white count (of which neutrophils are a part) is low, you may want to take precautions, particularly around sick people.

Jim,

I must apologize if I said something that sounded like I was saying that MDS could be cured with anything less than a transplant. I looked back at my posts in this thread but didn’t see anything, but you know how posts can sometimes be confused. You are absolutely correct in saying that meds control MDS, not cure it. Thanks for calling me young, I don’t get that much any more.

Zoe

Zoe

[Zoe]

I know that train feeling! The first time I had to walk into a cancer clinic was awe inspiring in a humble sort of way.

What I recall in the article, the people who lived 30+ years did not have transplants. It was (maybe still is) the largest study of patients under 50 years old at diagnosis. I was just looking at the article–at 20 years, 86% of low and intermediate patients who were younger than 50 at diagnisis were doing well without any intensive treatments, which would include transplants.

I do wonder if the 1.2% blast count is in the blood, because I can’t think of anything else besides bone marrow blast count that defines AML (acute leukemia) at 20%. They won’t have your bone marrow blast count until your results come back.

Even if you do need a transplant, your young age will be a huge asset to you! I know, believe me I know in many areas of my life, that this is easier said than done, but enjoy each day as a gift to unwrap. Even with this diagnosis hanging over your head, don’t let fear steal the joys of today.

Keep us posted!

Zoe

[Zoe]

Ramey,

Yes, people can live a long time with MDS. And many people are younger. There was a study done in Germany which found that younger people with MDS in the low risk categories were still alive and kicking at 30 years post diagnosis. Do you know what type of MDS you have? Blast count, that kind of thing, or is that what you will find out tomorrow?

Zoe

[Zoe]

Hi Rachel and welcome to the group. I think I have seen your posts on the Aussie board. I am not a member since I live in the US, but I lurk.

I am also 5q, diagnosed at 47, not quite as young as you. Although when the anemia is bad enough there are no barriers. Brain fog, exhaustion, I have both tonight.

Aranesp is doing a decent job for me right now. Though I just went from around 10 to 9 (or 100 to 90 depending on how you figure). I am hoping an early bedtime will help out. No Olympics for me tonight.

I did read a study out of Germany that younger patients with isolated 5q- were still doing well after 30 years. So, yes, management is more challenging because we are likely to have many transfusions, but at least we don’t have as many of some of the other problems statistically. I have the article if you are interested.

I haven’t had transfusions yet, so I can’t answer your transfusion question personally.

Zoe

[Zoe]

Plantcollector, Thanks, I will check it out. Many 5q don’t respond to Aranesp, but I did. So I hope I can respond to Revlimid when I get there. Next labs this coming Friday.

Zoe

[Zoe]

OMG, I had no idea there was a generic lenalidomide! My insurance won’t cover that when I get to that point. They cover my Aranesp as long as I go to the hospital for the injection. I am trending down on my hgb. Maybe I will rebound, I have before…nonetheless, I am off to check the bio scrip page. Thank you 5q Friend for sharing! I don’t make anywhere near $11K a month! It is crazy.

Zoe

[Zoe]

Deb,

If the blood is irradiated, does that prevent this problem from happening?

Zoe

[Zoe]

Lindajo, what wonderful news and a great thing to celebrate 19 years and still going strong! Congrats.

Pam, it is hard to believe it is going on a year from your transplant. You have earned a party…I mean who really needs an excuse for a party, but when you have a reason, it is all the better!

Zoe

[Zoe]

Mags,

I am in Logan. It is near Athens. No one seems to know where Logan is :^) Not Logan County, we are in Hocking County. I go to The James, where do you go?

Zoe

[Zoe]

I don’t know if this is the same, but I know someone who has gallbladder issues. When she was in the hospital her hgb dropped rapidly. They thought she was bleeding, but after a myriad of tests, they decided that her marrow just doesn’t function well under stress. After her gallbladder crisis ended, her hgb went back to normal. I wonder if you are similar and with the stress of pregnancy your bone marrow just doesn’t work well. She is young too, I think she is 26.

Zoe

[Zoe]

I am sorry to hear your sad news. May God bless you, encourage you and surround you with love.

Zoe

[Zoe]

Mags,

Labs vary somewhat on what they consider normal. However, RBC low end normal should be between 3.8-4.2 ish. My RBC runs around 2.7-3.1 lately, and my hgb is running in the low 10’s. But as Marlene said, they really look at hgb and hct for transfusions.

Zoe

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