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Chirley
Fri Sep 17, 2010, 08:55 PM
Hi,

I was just wondering if anyone else out there was averaging 2 units of blood a week?

I used to average 1 unit but then I had 3 cycles of Vidaza, missed 1 cycle of Vidaza and since then have been needing 2 units of blood a week. I assume that I'm not making any of my own RCCs any more and thought that now I must be destroying the donated ones as well. Does that sound right?

Is having that many blood transfusions a long term option? Does any one know if they do SCTs based on severe transfusion dependance rather than on blast counts?

Last blood counts were...


Hb 64
WCC 0.3
ANC 0.03
Lymphs 0.17
Plat 116


It seems that normal life doesn't exist any more and that this disease and it's treatment is taking control, I try to do other things but that is becoming more difficult.

Take care everyone.

evansmom
Fri Sep 17, 2010, 09:18 PM
Hi there,

It seems that a destruction process is going on with your RBC's as even transfused red cells should last a few weeks if not a month or more. There are many meds that can cause blood vessel injury, resulting in red cell breakage. If this were the case, it would be prudent to try a different med in it's place as hemolysis can be a dangerous situation if it became severe enough.

Ask your doc to check for red cells fragments (schistocytes) in your next blood smear plus have an LDH level done as if this comes back markedly raised and you have red cell fragments, one should start looking at the cause for the mechanical destruction of your red cells.

You want to try and minimize your transfusions if there is a possibility of needing a BMT in the future. More transfusions = more iron build up and more antibody production.

Hope this helps, take care.

Birgitta-A
Sat Sep 18, 2010, 07:09 AM
Hi Chirley,
During last spring I had to have 2 units of blood every week instead of every third week - then I decided to try Thalidomide and that drug has had a positive effect on my fibrotic bone marrow. My ferritin level rose from 1500 to 5600 but now it is 2000 and slowly decreasing.

The high ferritin level is toxic for liver, heart and other organs as you know. That is the most important reason for trying to avoid too many blood transfusions - I have received 142 units of blood since dx May 2006. I have autohemolysis - that is the red blood cells don't live long. I always get cortison in connection with transfusions but I don't think it has much effect.

As far as I remember your ferritin level was low though you have had many blood transfusions. That is positive since a high ferritin level has a negative impact on SCT http://ash.confex.com/ash/2009/webprogram/Paper18585.html

Increasing blast cells is the most important reason for SCT - for most MDS patients a SCT is not an option either they are tx dependent or not. You are lucky being young and otherwise healthy.
Kind regards
Birgitta-A

Chirley
Sat Sep 18, 2010, 09:38 PM
Thanks for that. I was starting to worry that 2 units of blood a week was very abnormal even for MDS. My last ferritin level was 2000 and I've had more than 20 units of blood since then. My doc keeps saying he's going to start Exjade but then he seems to forget about it.

I'm due to start my 5th cycle of Vidaza on Monday after missing the 4th cycle but now it seems as if the 5th cycle is going to be cancelled too.

Birgitta, I'm pleased to learn that the Thalidomide has worked so well for you. I hope it keeps working for a long time.

Bye

Chirley

Laura
Sat Sep 18, 2010, 11:31 PM
Why are they getting cancelled?

Laura

Birgitta-A
Sun Sep 19, 2010, 06:07 AM
Hi Chirley,
Thank you for wishing me a good treatment result with Thalidomide for a long time! Now my HGB is decreasing 4 points/week compared to 20 points/week before Thalidomide :).

Perhaps you should remind your doctor about Exjade because Exjade can have adverse effects like low WBCs and high kreatinin so it can take time to find the best dose. I can't take more than 500mg/day though I should take 1250mg/day but my WBCs will not tolerate that dose.

Now they have found that it is important to try to decrease the ferritin level before a SCT. This abstract is from the EHA Conference June 2010:
http://www.eventure-online.com/eventure/publicAbstractView.do?id=136450&congressId=3446
Kind regards
Birgitta-A

Chirley
Sun Sep 19, 2010, 11:27 AM
Hi,

Thanks for that, I'm definitely going to ask him about Exjade again.

Laura, I had 3 cycles of Vidaza and the only change in my blood counts were that my platelets dropped and started to not recover fully. As I'm paying the full cost of the Vidaza at $7,700 per cycle the doc decided to do a bone marrow after 3 cycles instead of the customary 6. The results showed that everything had gotten worse and the blasts had increased markedly so that I was now well and truly RAEB 1. My ringed sideroblasts had increased to 58%. He decided to cancel 1 cycle and repeat the BMB to see if there was any change negative or positive and then decide where to go from there. At my last appointment I got the impression that we may just proceed to SCT (although no donor found yet). I'm due to start the 5th cycle of Vidaza tomorrow but he has not made any appointments for me, so it's either cancelled again or it's going to be delayed. I get my latest BMB results on Thursday.

There is a lot of waiting with this disease isn't there?

Any one feeling the cold yet? We have had a wet spring so far but the temp has been good.

Bye


Chirley

Laura
Sun Sep 19, 2010, 02:52 PM
I am so sorry to hear that Chirley! I hope that they can find you a donor and things start moving on the right tract soon!!!

Yes, it is cold here!!

Laura