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  #1  
Old Thu Jan 26, 2012, 08:10 PM
annmonster annmonster is offline
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Hemoglobin Numbers at Transfusion .....

Hi Everybody ....


My Dr. transfuses me when my hemoglobin numbers are 7.0 or lower and gives me ONE unit of blood..... is this consistent with your experiences ??
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  #2  
Old Thu Jan 26, 2012, 08:21 PM
Chirley Chirley is offline
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At my cancer centre they transfuse transfusion dependent people if they are below 100. For people who are anaemic as a result of chemo or other treatments they use a lower number depending on how well they cope symptomatically.

The thinking is that chronic low Hb can cause heart problems so they try to keep the baseline pretty high. It also improves your quality of life.

Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #3  
Old Fri Jan 27, 2012, 07:16 AM
Marlene Marlene is offline
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John's HGB threshold was 8.0 and would get two units. He went to one unit when his time between transfusions lengthened. But most get two units.

1 - How do you feel at 7.0 ?
2 - Does one unit make you feel better?
3 - How often do you get transfused?

You really need to go by how you feel and what, if any, symptoms you are experiencing. And if one unit only gets you one week, you may do better with two units.

And as it's been mentioned before on this site, the fresher the blood the longer it lasts in you.
__________________
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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  #4  
Old Fri Jan 27, 2012, 06:20 PM
cheri cheri is offline
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My experience has varied due to the fact that I need blood that comes from Phila and has to be ordered the day before. For example, I had 2 units Tuesday, as my Hgb was 7.5 on Monday; but one of those units was NOT fresh, and I needed 2 more today, Friday. Twice is one week is not good, as my ferratin is sky high anyway.

Yesterday my Hgb was 8.3, but it would have been Tuesday before I got blood, so we decided to do it today. Hopefully it will last a few weeks, as both bags today were fresh, due to expire the end of Feb....I totally agree with the fresh factor, but how do you insure it?

There have been times when my Hgb was in the 7's and I felt great! Even today, I didn't feel that I needed blood. I think sometimes certain bags of blood agree with your system more than others....and also, what other health issues you have at the time.

I don't think I have ever gotten just one unit of blood, but if that is enough to keep you going, less is better....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #5  
Old Fri Jan 27, 2012, 10:18 PM
Greg H Greg H is offline
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My number is generally 8.0 and I always get two units, unless my Hgb has dropped into the sixes. Then I get three.

I was just transfused at 8.3 because I was somewhat symptomatic. And I knew, if I waited another week, I'd be in the low sevens and feeling like crap.

I find my symptoms (fatigue, shortness of breath, all the usual stuff) do not march in lockstep with my hemoglobin level. But when I'm getting down in the sevens, I usually can tell based on symptoms.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #6  
Old Fri Jan 27, 2012, 10:20 PM
Greg H Greg H is offline
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Research on unit age

While the subject has come up, has anyone seen any good research on PRBC unit age and effectiveness? I've seen a lot of anecdotal evidence that older units don't last as long in the body, but I haven't seen much in the way of actual research.

Anyone run across any good papers?

Thanks!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #7  
Old Sat Jan 28, 2012, 06:38 AM
Birgitta-A Birgitta-A is offline
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Blood

Hi Greg,
I have read many articles about "old blood". They are all about patients who need txs due to operations and never about patients like us with hematological cancer. Sometimes they find that blood older than 10 days gives more complications and sometimes they find that there is no difference.
http://www.doctorslounge.com/index.php/news/pb/26288

I always control the age of the blood. It is often 7 to 14 days old and I have never found that 7 days old blood lasts longer than 14 days old blood.
Kind regards
Birgitta-A
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  #8  
Old Sat Jan 28, 2012, 09:17 AM
Greg H Greg H is offline
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Thanks, Birgitta!

One would think the Red Cross or some of the blood banks would be doing research on this among folks with bone marrow failure.

At my hospital, the blood always has an expiration date and information about the source. It does not, however, have the date when it was collected (nor the volume of the unit). I will have to check how the expiration date is determined, so I can calculate backwards from that.

I quite often receive blood that is 14 day from expiration -- or even near expiration. Perhaps I should speak with my hematologist and the blood bank manager to see if we can specify blood that is "younger."

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #9  
Old Sat Jan 28, 2012, 09:54 AM
cheri cheri is offline
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I agree Greg--those needing blood following surgery or injury do not have the same requirements as those of us who have bone marrow issues.

I am thinking, as well, as to how to get my Dr to insure that I get the freshest blood possible, as each unit increases the nefarious ferratin. We can't afford to have blood that isn't fresh!

I also note that there are volume variations, and am surprised that there are not notations on the bag, as in platelets. I also think this can affect the length of time between transfusions.

From what I have seen, the Red Cross has a lot of discrepancies in their operational efficiencies--doubt they have the time or funding for research on quality of blood donated!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #10  
Old Sat Jan 28, 2012, 09:59 AM
Chirley Chirley is offline
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Hi, I once had blood that was 2 days from expiry. I thought to myself that I'd be back in within 2 weeks. I was having 3 weekly transfusions at the time. I was very pleasantly surprised that I went almost 4 weeks before I needed the next transfusion.

I know that Hb drop doesn't seem to have rhyme or reason but it did make me question the thinking that old blood didn't last long once transfused.

Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #11  
Old Sat Jan 28, 2012, 10:25 AM
cheri cheri is offline
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Chirley
Three tx a week? For how long? Did your ferratin skyrocket?
What caused the change to not needing as many tx?
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #12  
Old Sat Jan 28, 2012, 10:25 AM
cheri cheri is offline
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Question

Which reminds me: how does an infection influence your Hgb, if at all?
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #13  
Old Sat Jan 28, 2012, 10:57 AM
slip up 2 slip up 2 is offline
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We had a meeting last year with the head of the Blood Bank, started by asking questions about the iron in the older blood....more free iron....she did some research and came back to us after consulting with other hospitals and she found it to be true...My husband now gets the newest blood possible...
Also with developing anit-bodies, the heart rate goes sky high and blood trans. are of little use until they are found...something are chemo nurses did not know...hence 3 days in hospital emerg. and a mess...
I know I have found so much info on this site, it always feels like a best friend is beside you...and no question is too silly...
We now keep my husband's HB over 90, he just feels so much better, but at times it is in the 80's and he feels like it is over 100...
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  #14  
Old Sat Jan 28, 2012, 02:17 PM
Marlene Marlene is offline
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I came across these studies in Pub Med and one Cleveland Clinic article. Of course, they do not address transfusion in BM failure but based on their finding, you can easily see how this applies.

http://www.ncbi.nlm.nih.gov/pubmed/2...?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/20299509

http://www.ncbi.nlm.nih.gov/pubmed/21545003

http://www.cap.org/apps/cap.portal?_...geLabel=cntvwr

Quote from the above article says it all ......

Stored blood and steak are both protein, Dr. Shander says, but a person would probably “think about 1,700 times before cooking and eating 42-day-old steak.” And while blood is sterile and probably not growing anything, it’s decaying as a protein for 42 days, he points out. “So why spend time arguing about whether the literature is equivocal on whether older blood is more harmful than fresher blood? There’s no question in anyone’s mind that the longer a protein decays, the less functional it is. And there are lots of other things in the blood—it’s basically a bag of immune complexes.”
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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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  #15  
Old Sat Jan 28, 2012, 03:18 PM
Birgitta-A Birgitta-A is offline
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HGB and infection

Hi Cheri,
Infections can decrease all counts in MDS patients - that's why I live like I am neutropenic though my WBCs now are normal without Neupogen. Here is an article about anemia and as you can see infections can give anemia:
http://asheducationbook.hematologyli...010/1/276.full

Hi Marlene,
Yes, I am sure of that blood - as well as everything else that enters our bodies - not should be old and have started to decay.
Kind regards
Birgitta-A
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  #16  
Old Sat Jan 28, 2012, 08:12 PM
Chirley Chirley is offline
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Sorry, my fault. I meant Tx every 3 weeks.

Also when I had an infection in my Achilles tendon and was in hospital for antibiotics, my Hb drooped over 20 points in one day. It went from 101 to 79 overnight. My doctor said it decreased the life of the circulating red cells.

Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #17  
Old Sat Jan 28, 2012, 09:15 PM
riccd2001 riccd2001 is offline
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Keeping track of volumes and dates of expiry...

Maybe this is only anecdotal, but for me it's very specific for the last 12 months. BTW I'm using the SI system of measurement where the normal range units for Hgb are grams per litre(M 81 to 112; F 74 to 99); Plt count are x10 ^9 per litre; Serum Ferritin are microgram per litre(M 12 to 300; F 10 to 150); Serum Creatinine are micromoles per litre(M 110; F 94).


Jan 6,2011 Hgb 71 #1 295ml donated Dec 6,2010 expire Jan 17,2011; #2 303ml donated Dec 15,2010 expire Jan 26,2011; Ferritin 814; Creatinine 145; Plt 570.


Jan 26,2011 Hgb 72 #1 290ml donated Dec 22,2010 expire Feb 2,2011; #2 303ml donated Dec 26,2010 expire Feb 8,2011; Ferritin 770; Creatinine 140 ; Plt 625.


Feb 5,2011 Hgb 65 #1 300ml donated Jan 26,2011 expire Mar 9,2011; #2 306ml donated Jan 27,2011 expire Mar 10,2011; #3 313ml donated Jan 22,2010 expire Mar 5,2011; Ferritin ?; Creatinine ?; Plt ?


Mar 9,2011 Hgb 77#1 339ml donated Feb 3,2011 expire Mar 17,2011; #2 337ml donated Feb 10,2011 expire Mar 24,2011; Ferritin 727; Creatinine 131 ; Plt 616.


Mar 30,2011 Hgb 77#1 332ml donated Feb 21,2011 expire Apr 4,2011; #2 332ml donated Mar 1,2011 expire Apr 12,2011; Ferritin 738; Creatinine 150 ; Plt 706.


Apr 20,2011 Hgb 77#1 353ml donated Mar 31,2011 expire May 12,2011; #2 252ml donated Mar 21,2011 expire May 6,2011; Ferritin 773; Creatinine 138 ; Plt 618.


May 11,2011 Hgb 77#1 315ml donated Apr 11,2011 expire May 24,2011; #2 268ml donated Apr 4,2011 expire May 16,2011; Ferritin ?; Creatinine 130 ; Plt ?


Jun 1,2011 Hgb 73#1 249ml donated Apr 28,2011 expire Jun 9,2011; #2 336ml donated May 9,2011 expire Jun 20,2011; Ferritin 756; Creatinine 144 ; Plt ?


Jun 22,2011 Hgb 63 #1 285ml donated May 16,2011 expire Jun 27,2011; #2 325ml donated May 31,2011 expire Jul 12,2011; #3 352ml donated Jun 8,20101 expire Jul,20 2011; Ferritin 728; Creatinine 156; Plt ?


Jul 13,2011 Hgb 75#1 315ml donated Apr 28,2011 expire Jun 9,2011; #2 345ml donated Jun 21,2011 expire Aug 2,2011; Ferritin 822; Creatinine 128 ; Plt 603.


Aug 3,2011 Hgb 74#1 281ml donated Jul 15,2011 expire Aug 26,2011; #2 258ml donated Jul 15,2011 expire Aug 26,2011; Ferritin 776; Creatinine 118 ; Plt 608.


Aug 24,2011 Hgb 77#1 287ml donated Aug 1,2011 expire Sep 12,2011; #2 303ml donated Aug 1,2011 expire Sep 12,2011; Ferritin 676; Creatinine 125 ; Plt 563.


Sep 14,2011 Hgb 72#1 271ml donated Aug 23,2011 expire Oct 4,2011; #2 317ml donated Aug 23,2011 expire Oct 4,2011; Ferritin 763; Creatinine ? ; Plt ?


Oct 5,2011 Hgb 81#1 325ml donated Aug 27,2011 expire Oct 8,2011; #2 318ml donated Sep 8,2011 expire Oct 20,2011; Ferritin 949; Creatinine 128 ; Plt 565.


Oct 26,2011 Hgb 74#1 334donated Sep 20,2011 expire Nov 1,2011; #2 276ml donated Sep20,2011 expire Nov 1,2011; Ferritin 844; Creatinine 129 ; Plt 617.


Nov 16,2011 Hgb 73#1 326ml donated Oct 24,2011 expire Dec 5,2011; #2 280ml donated Nov 1,2011 expire Dec 13,2011; Ferritin 804; Creatinine ? ; Plt ?


Dec 7,2011 Hgb 76#1 332ml donated Nov 16,2011 expire Dec 28,2011; #2 361ml donated Nov 28,2011 expire Jan 9,2012; Ferritin 813; Creatinine 106 ; Plt 604.


Dec 29,2011 Hgb 73 #1 270ml donated Dec 5,2011 expire Jan 16,2012; #2 291ml donated Dec 5,2011 expire Jan 16,2012; Ferritin 1061; Creatinine 126 ; Plt 668.


Jan 18,2012 Hgb 72#1 332ml donated Dec 12,2011 expire Jan 23,2012; #2 269ml donated Dec 13,2011 expire Jan 24,2012; Ferritin 864; Creatinine 129 ; Plt 659.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #18  
Old Sat Jan 28, 2012, 10:04 PM
Greg H Greg H is offline
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Ric,

Very interesting that you are tracking this. I'm going to backtrack my data and see if I can pull anything out of it. I haven't recorded all the data in a spreadsheet, but I use my iPhone to photograph every unit of blood I receive, so I should be able to pull the photos and create a spreadsheet.

What conclusions do you draw from your data?

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #19  
Old Sat Jan 28, 2012, 10:11 PM
Greg H Greg H is offline
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Quote:
Originally Posted by Marlene View Post
Dr. Shander says, but a person would probably “think about 1,700 times before cooking and eating 42-day-old steak.”[/b]
Dr. Shander must be a vegetarian. The best testing, most tender, priciest steaks are in fact "old," though the restaurants generally call them "aged."

But the process is usually limited to 20-30 days, and the tenderness is indeed a side effect of tissue breakdown. :-)

Thanks for the references Marlene!

Take Care.

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #20  
Old Sun Jan 29, 2012, 03:23 AM
cathybee1 cathybee1 is offline
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Bruce gets transfusions when his hgb is below 8.3. He's usually not symptomatic then. But...this week, when he had his bloodwork, he was at 8.1 and could definitely tell it was time. He was tiring easily, and coming up stairs caused breathlessness. It wouldn't seem like .2 would make such a difference. But in Bruce's case, it does. So, I would think you should be able to decide and not the doctor. Btw, at our local hospital, if you are at 7, you can go into the ER and get a transfusion, no questions asked.

As far as expiry date, Bruce has asked his doctor to request the freshest blood possible. Now the nurses at the outpatient unit where he gets his transfusions pass that request on routinely. The blood from the transfusion yesterday had an expiry of February 9.

What a great idea, Greg, to take pictures of your blood!
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #21  
Old Sun Jan 29, 2012, 10:39 AM
Marlene Marlene is offline
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Great idea Greg to take a pic of your blood!!!

And yes, steaks are aged to make them tender. Pretty disgusting when you think of it. We have the fortune to get some our meats from an Amish farm and you can tell the difference in freshness between the supermarket and the farm just by the smell.

But at least when you consume food, your body has defenses like stomach acid and bacteria to deal with the pathogens we consume. Not so when injecting them directly into the blood.
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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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  #22  
Old Sun Jan 29, 2012, 04:15 PM
riccd2001 riccd2001 is offline
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Cool

Quote:
Originally Posted by Greg H View Post
Ric,

Very interesting that you are tracking this. I'm going to backtrack my data and see if I can pull anything out of it. I haven't recorded all the data in a spreadsheet, but I use my iPhone to photograph every unit of blood I receive, so I should be able to pull the photos and create a spreadsheet.

What conclusions do you draw from your data?

Take care!

Greg
My conclusions are personal to me; however, I will say that fresher IS better; using Exjade is necessary to keep increases in ferritin levels under control but also watching out for the undesireable side effect of raising Creatinine levels (no matter what Novartis claims); and keeping track of PRBC donation dates and infused volumes is still a good idea.

And truly greatful THANKS to people who donate this life-giving gift to us with MDS who are in the battle to survive as long as we can!!!
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #23  
Old Mon Jan 30, 2012, 01:20 PM
Lbrown Lbrown is offline
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I would doubt that blood is sterile. In fact, the human genome project showed a ratio of 10:1 bacterial cells to human cells in the human body. All those bacteria have to live somewhere.

Page 128 of this magazine article: "Growing the Recalcitrant": http://www.theasm.org.au/uploads/pdf/MA_Sept_07.pdf

http://www.human-microbiome.org/file...mendations.pdf

http://www.amazon.com/Metagenomics-H.../dp/1441970886

Deb
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  #24  
Old Thu Feb 2, 2012, 02:36 PM
Marlene Marlene is offline
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Hi Deb,

Have you ever looked into ozone therapy as it relates to pathogens. I know it's not mainstream medicine and I have read a little bit about it years ago but never seriously looked into it. It's premise is that ozone therapy can kill viruses, bacteria and fungi. At one point in John's recovery, I looked into topical oxygen therapy for stubborn wound that wasn't healing and even considered hyperbaric oxygen as an option for his hemorrhagic cystitis. Both resolved and we didn't need to go down that road.

Just wondering if you came across it in your research.
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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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  #25  
Old Thu Feb 2, 2012, 08:19 PM
Lisa Z Lisa Z is offline
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Cherie

I live in the Philly suburbs and when I was getting transfused, the threshold my doctor used was 8 for hgb. I often was able to go to low 7's however. I ended up using Exjade for 6 months and then went off it. My iron ferritin was only around 1300, but I wanted it normal. The exjade made me mildly neasus for the last 4 months I was on it. I justs had to go off it, but by then I was down to around 450 and then after I went off it, my counts went to normal anyway and have remained there. I am transfusion independant now, but if I had to chelate again, I guess I would - just to get rid of the iron, but it wasn't enjoyable and I also work full time.....
I also was concerned about the dates on the blood.......
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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