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Old Wed Sep 24, 2008, 05:08 PM
susaq susaq is offline
Join Date: Sep 2008
Location: Princeton, NJ
Posts: 6
Question End Stage MDS suspected

HI all, It's nice to see a forum about such an unpleasant subject. My Dad * 83 years old) was diagnosed with MDS about 10 years ago, became transfusion dependant 5 years ago and underwent some chemo about 4 years ago which successfully put him into remission.
Over the past few months he has become transfusion dependant again with only his hemoglobin failing - his white count and platelets are holding.
I'm wondering what to expect since it seems that the MDS has returned and there are no alternatives for him.
He is very tired and weak all the time, feels achy and nauseaus often. He's pretty discouraged. Does this sound like end-stage MDS? What else can we expect?

Thanks to all who respond.
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Old Wed Sep 24, 2008, 06:07 PM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,309
Just a thought....have they ruled out an bleeding which may be causing a drop in HGB only. Also, is his iron, B12 and folate at least in the mid range of normal? It is possible that it's something else causing the drop HGB.

Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Sep 25, 2008, 02:21 AM
Wayne O'Shana Wayne O'Shana is offline
Join Date: Jan 2007
Location: Vista, CA
Posts: 15
End Stage MDS?

Hi Susaq:

Don't think "end stage" without looking at counts and IPSS score first. Could you provide that information? No alternatives? From the information you provided it is hard for me to beleve that your dad is getting proper treatment. Please remember that when you hire a hem/onc they can be just as stupid as any other worker, and should be retained or fired just as you would a plumber or a carpenter. I was able to train one hem/onc and was happy to get rid of three third-raters. If you have not already done so click on "Medical Resources" at the left side of the home page and search "US Treatment Centers". There are several good places in your area. You might consider what worked for me:

1. Demand that all blood be leukocyte reduced and irradiated at time of collection. This is important for pts getting chronic tx.

2. Epogen 60,000 and Neupogen 300 once per week. They work together so demand the combination.

3. Try to maintain Hgb in a range of 10.0 to 12.0. Going outside of this range can cause trouble.

Please keep us posted.

Best wishes...
Middle-aged (83 yo) dx Nov 4, 1997 w/MDS-RA+pancytopenia, tx about 18 mo. Responded to EPO+G-CSF. Ferritin dropped from 2500 to 480. Three non-fatal heart attacks, five non-fatal strokes and a lot of TIAs. Otherwise in very good health.

Last edited by Wayne O'Shana : Thu Sep 25, 2008 at 02:24 AM. Reason: typo
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Old Fri Sep 26, 2008, 12:25 PM
susaq susaq is offline
Join Date: Sep 2008
Location: Princeton, NJ
Posts: 6
Post More diagnostic tests

Thanks for the responses. To your point, Marlene, my father has been going through lots of tests in the past 8 weeks to determine if there is internal bleeding and so far there is nothing. They are also looking to see if he has blood and/or heart infection. He is getting the results of the blood cultures today but they've done an echocardiogram which was negative and cultured his blood a few weeks ago with no infection cultured.

Wayne, in response to your questions, I don't have a lot of info on his blood work but could get it. I can't imagine that his blood has been irradiated or received any other special treatment so I'll have to get more info on the points that you made.

I have met his hemo/onc and don't have a lot of confidence in him. He is saying that the MDS hasn't returned because his platelets are good but from my reading, the platelets and white cells can remain stable while the hemoglobin falls.

This is difficult because he's in FL and I'm up north. He's feeling terrible and isn't really capable of advocating for himself but also won't admit that...
I've tried to make suggestions to him and he does listen but then forgets. I've called his doctors myself and they don't return my call. I am a health proxy for him.

I just read about about the new drug vediva (sp?) and am wondering if that could help him at this point. He had been on revlimid and had to get off it because is was causing him severe leg pain.

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Old Fri Sep 26, 2008, 01:55 PM
Birgitta-A Birgitta-A is offline
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
End stage MDS

Hi Susan,
Your dad must be very strong fighting this disease for so many years! You know I think it is very common that MDS patients have low red blood cells and normal white blood cells and platelets.

As Whayne already told you you must ask if they have tried to treat your dad with Epogen (for red blood cells) or similar drugs and Neupogen (for white blood cells but works with Epogen for better effect) or similar drugs. He has perhaps had both these types of drugs before?

The drug vediva is unknown to me - do you mean Vidaza? Vidaza is considered to be the best drug for MDS patients except for patients with a chromosome aberration, 5q. These patients often respond well to Revlimid. It may take at least four months for Vidaza to "kick in" but then about 60 % of the patients have some hematological improvement.

Hope your dad gets effective treatment!
Kind regards
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for 4 days with transfusions for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic
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Old Wed Oct 1, 2008, 01:05 PM
susaq susaq is offline
Join Date: Sep 2008
Location: Princeton, NJ
Posts: 6
Angry Leukemia now suspected

My dad just came back from the MD and his white count and platelets are down as well as his hemoglobin. The same MD who said " no, the reason you feel so terrible isn't the MDS coming back" is now saying that it could be leukemia. As you can imagine, I am not at all happy with this MD.
He is going for a BMB on Tuesday - which seems like a long wait when they're suspecting leukemia... It is so hard to be far away when he is going through this. As I said before I can call his doctors until the cows come home and they won't return my call.
Would the Center of Excellence close to him be a good place to start if this is leukemia? He's 83 and not in the best of health right now ( I guess obviously) so I'm not sure what kind of treatment would be good for him - if there is any available....
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Old Wed Oct 1, 2008, 04:32 PM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 610
Hi, susaq.

Having a decreased white count is not consistent with a transition to leukemia, which is typically related to an abnormally high white count.

Depending on where your Dad is located in Florida, you might try to get him into either the Mayo Clinic in Jacksonville or the H. Lee Moffit Cancer Center at the University of South Florida in Tampa. If he can't get to either one, you may be able to have a specialist at one of these centers review his BMB results in order to give you a second opinion about his diagnosis and treatment options.

Hope this helps.

Ruth Cuadra
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Wed Oct 1, 2008, 05:34 PM
susaq susaq is offline
Join Date: Sep 2008
Location: Princeton, NJ
Posts: 6
Thank you, Ruth, for your reply. My mother told me about the white blood count so I need to check and see what the count is - high or low. YOur info about the Mayo clinic and Moffet Center are great. I appreciate it.

Right now, my father doesn't want me to know so I'm waiting a day before I talk to him. It sounds like every day counts with this disease so I'm not going to wait for too long.

Thanks again.

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