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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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Old Wed Feb 3, 2010, 10:55 AM
Jill2008 Jill2008 is offline
Join Date: Jul 2008
Location: Redding, CA
Posts: 84
Question When are transfusions needed?

I just had a BMB on Friday and don't have all results yet, but my platelet count has been slowly and steadily dropping...currently 23,000. At what point are transfusions usually needed?
Also, my ANC count has dropped to .7. My doctor has recommended a modified low-microbial diet. I'm curious what other precautions I need to take with my neutrophils being this low. Should I be avoiding going out in public?
Am I just being paranoid?
Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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Old Wed Feb 3, 2010, 11:44 AM
squirrellypoo squirrellypoo is offline
Join Date: Nov 2008
Location: London, UK
Posts: 458
I know transfusion levels for red blood differ from hospital to hospital, so platelet transfusion protocols probably do, too.

Anyway, at my hospitals, I'd get transfused if my platelets dropped below 20, or (once I needed HLA matched platelets, which require a 24 hour lead time) if it looked like I was going to drop below that in the next day or so.
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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Old Wed Feb 3, 2010, 12:30 PM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,330
Platelets can vary from person to person. John could go as low as 8K without any bleeding. You will have to find your threshold. Somewhere between 10K and 20K is when they'll consider transfusing. But if at anytime, you have bleeding that doesn't stop, you need to call your doc.

Regarding your ANC. At .7, you still have enough to fight infections but why chance it? I would take precautions and stay away from those with colds, viruses, etc. An infection can tax your immune system and fevers do chew through red cells and platelets. So avoid what you can but don't stop living. Instead of going to the 7 pm movie on Saturday nite....go to an afternoon showing. Go shopping during off-peak hours and be selective when going out to eat. No raw fish, or undercooked meat/fish. Just re-assess what you do and modify things to mitigate the risk.

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 Wed Feb 3, 2010, 01:57 PM
Hawaii Bill Hawaii Bill is offline
Join Date: Jun 2008
Location: Waikele Hawaii
Posts: 100
Tx levels

When I was transfusion-dependent and outside the hospital, my doctor transfused me when hemoglobin dropped below 8 or platelets were below 20. In the hospital during ATG treatment, the hemoglobin threshold was below 7 and platelets below 10. But I think it really does depend on the patient and their own ability to handle the low counts.
Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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Old Wed Feb 3, 2010, 04:38 PM
tytd tytd is offline
Join Date: Jul 2009
Location: Southeast, USA
Posts: 132
platelet transfusions

Hello Jill,
I, too, get paranoid and anxious when my platelet count gets below 20k, fortunately I don't have to worry about a low WBC as you do. As far as platelet transfusions go, I agree with everything that Marlene has said. Everyone with these diseases is different and one number that would trigger transfusion does not apply to all. In general from what I have read and heard, as long as your platelet count is above 20k you are probably OK as far as bleeding goes unless you are injured or have to have minor surgery. Also the rate of decline of the platelet count, I think, makes a difference in this also. I am unusual in that my platelet count has declined slowly and I've done OK with counts ranging from 19 - 25k over the past year. The usual trigger for platelet transfusions is less than 10k in most circumstances. However there is an increased risk for bleeding if you have a fever, infection, significant kidney or liver disease, clotting disorder, enlarged spleen or very low HCT. In those cases they might transfuse sooner, say between 10k and 20k. Some have even recommended transfusion only if you are bleeding with a low platelet count. I've also heard an expert say that 7k seems to be the magic number below which bleeding events rise dramatically. These are just guidelines that I have read and of course your hematologist is the best one to ask about his platelet transfusion guidelines. If you have fever, infection, bleeding, trauma -- get to your doctor right away. Avoid any medications that might affect your counts. I'm sure you already know this. Good luck and keep us informed about your transplant preparations. Tytd
possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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Old Thu Feb 4, 2010, 11:35 AM
Jill2008 Jill2008 is offline
Join Date: Jul 2008
Location: Redding, CA
Posts: 84
Thank you!

Wow..thanks for all the info everyone! I return to Stanford next week for a chest x-ray and EKG and to go over my latest biopsy results. The lowest my platelets have been so far is 21. I am being very cautious what I eat and I am avoiding going out at peak times when places are crowded. I also carry a small bottle of hand sanitizer and anti-bacterial wipes in my purse. My husband has offered to take over the grocery shopping for me. I will let you know what we find out next week.
Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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Old Thu Feb 4, 2010, 01:10 PM
Birgitta-A Birgitta-A is offline
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Low WBCs and platelets

Hi Jill,
You have already got much info about your low counts. Perhaps you could ask for Neupogen or a similar drug for the low WBCs. Then you have probably read info to neutropenic patients. Here is a quite good link about avoiding infections:

Since I had neutropenic fever (almost sepsis) 2007 I live like I have neutropenia though I take 2 Neupogen injections/week and have normal WBC.

You know that there are a lot of drugs specially pain killers that can decrease platelets.

Then there are 2 drugs for patients with a special type of disease with low platelets (Immune Thrombocytopenic Purpura). The drugs are Nplate and Promacta. Both are in trials for MDS. Nplate har given some MDS patients increased blast cells/AML and I should not take that drug. One member of Marrowforums is taking Promacta for his low platelets since June 2009 with good result.

Hope your counts will increase !
Kind regards
70 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal and Exjade for iron overload, Neupogen for low WBCs.
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Old Thu Feb 4, 2010, 02:51 PM
Lisa V Lisa V is offline
Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Our doctor used 10k as a generic target number for transfusing platelets, but it really depends on how well you do at different levels. If you're having petechiae and bruising above that level, then you should transfuse. Other patients have experimented with letting it go as low as possible just to avoid so many frequent transfusions, and have arrived at target numbers as low as 4 or 5k with no ill effects. Obviously you have to be very cautious and avoid putting yourself at risk for injury while you're doing this.

tytd mentioned the rate of decline, and this was always a big issue for us too. If Ken's Plts were dropping 20 or 30k in a week, we would always try to schedule the next transfusion before he actually hit 10k because we knew that by the time of the appointment they would be there or lower. The problem was in getting the nurses to see it that way, as they had strict orders not to order a tx if his last reading was still, say 12k. You'd think it would be common sense to look at the trajectory rather than just the static count, but maybe SAAers drop more rapidly than most patients? I really don't know, but it certainly caused a lot of hysteria around our house!
-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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