No Effect from Transfusions

[Alice P]

None of the treatments available to my husband have had any effect, so he is now on supportive care alone. He is averaging 2 units of pRBC every two weeks and platelets every 10-14 days. For the last month or so, however, he has been seeing very little, if any, improvement in his energy level after a transfusion. He is unable to walk more than a few yards without stopping to rest, whether his Hgb is 9.5 or 7.5. Does anyone know if it would be possible, and help him to feel better, to get his Hgb up to 12 or so and then transfuse at 10 or 11? Any thoughts or suggestions would be appreciated.

[bebop]

I am sorry it doesn't seem to be doing anything for him. do they have to have special donors for him due to antibodies? I would check the date on the blood. It could be that it is close to expiration on the bags. I know if my dad got older blood he didn't have alot of effects on him.

[Marlene]

Alice,

Have his testosterone checked. John's bottomed out. He feels soooo much better since he started a bio-identical testosterone.

[Birgitta-A]

Hi Alice,
As Marlene suggested testosterone either a bio-identical drug or Danazol as other members are trying perhaps could help your husband.

He has not yet tried Dacogen - some patients respond to Dacogen but not to Vidaza though they are the same kind of drugs.
Kind regards
Birgitta-A

[gatorback]

Erythroytes (Red Blood Cells) follow a lifecycle outline here.

Key facts from the article indicate that under normal conditions:
1) 2.5 Million of 25 Trillion or .00001 % of all RBCs 'die' each day
2) Production period for RBC maturity is 4 days
3) RBC Lifespan is 120 days

If we assume that:
* a transfusion brings us up to 100% (25 Trillion RBCs) and
* age of infused and self produced RBCs is evenly distributed
* effectively no new RBC are produced \ infused

I realize that these assumptions may not be realistic, however I would expect that slightly less than 1% (1/120) decline in Hb every day.

Why all the mathematical gymnastics? Well, my dad was diagnosed with MDS and infusions would help but lethargy would set in rapidly afer a few (2-4) days. If a blood infusion results in lethargy\fatigue < 2 days, then either the transfusion did not provide a significant enough RBC boost and \ or something is accelerating RBC deaths (for example Malaria or possibly cytokines)

I like this MDS explanation: http://www.greghankins.com/gregsmds/The_basics.html

[Birgitta-A]

Hi Gatorback,
You know one unit of PRBCs increases HB about 1 g/l http://www.pathology.med.umich.edu/b...h_5/index.html

When our HB decreases very fast the reason is often hemolysis due to antibodies as bebob wrote.

I had hemolysis very soon after my first transfusion (at dx) and after 142 units of PCBCs I have many irregular antibodies. It takes hours to find blood for me and I always get Solucortef (like Prednisone) injected before transfusion. Today I don't need any transfusions due to positive result after Thalidomide treatment.
Kind regards
Birgitta-A

[Gene_In_Va]

Dear Alice P,

There is one other possibility I have seen others mention here: That is one of internal blood loss or bleeding depleting the RBG supply as quickly. That was one of the first things I had checked. Then the internalist sent me to the oncology group.

Has this been checked out as well?

Gene_In_Va

[Alice P]

My husband's hematologist agreed to try a little experiment, although he had doubts about the outcome. John was admitted to the local hospital on Monday with a Hgb of 8.8 (and barely able to walk). He had 4 units of pRBC infused overnight along with a bag of platelets (13,000 upon admission). He was discharged Tuesday morning and, today, Wednesday, while I was at work, John spent most of the day outdoors. He drove himself into town, went to the bank, post office, and bakery. He started up the tractor and took a ride around the property. When I came home, he was messing around in his workshop. This is the first day he has been able to do much but lie in bed since October. I'm not sure how high his Hgb got or how long the benefits will last, but the extra red cells sure have given him a reason to enjoy life again. He goes for a CBC tomorrow. I am looking forward to receiving those results and sharing the results of the transfusions with the doctor.

[bebop]

I think the biggest issue is keeping the blood levels up. it is very hard to do since most drs won't infuse unless they are down into the 8's I think due to medicare. strange they won't pay or something if they are higher. that's our government for you though. I am so glad your husband got some life back into him! sure makes it a little easier for the caretaker to deal with it.

[cheri]

Bebop, glad to see you are still around....how are you holding up?

[bebop]

cheri I am hanging in there. how are you? good to see you too

[Alice P]

Today wasn't quite as good as yesterday, but it was still quite an improvement over the past month. John's CBC showed his Hgb was 11.3, hematocrit 33.6, and platelets 24,000. He was able to get around, do a little shopping, pick up the mail, and climb the stairs without assistance. I hope we can use 10-11 as his new transfusion threshold. His primary insurance is BC/BS through my work policy; Medicare is secondary. So far, his transfusions have not been questioned, except that the hospital somehow cannot link his account to our blood bank membership. So we have to call every time we get a bill for blood products and explain that we should not be billed. Sigh...

[Sunnsurf@bellsouth.net]

Originally Posted by Alice P

None of the treatments available to my husband have had any effect, so he is now on supportive care alone. He is averaging 2 units of pRBC every two weeks and platelets every 10-14 days. For the last month or so, however, he has been seeing very little, if any, improvement in his energy level after a transfusion. He is unable to walk more than a few yards without stopping to rest, whether his Hgb is 9.5 or 7.5. Does anyone know if it would be possible, and help him to feel better, to get his Hgb up to 12 or so and then transfuse at 10 or 11? Any thoughts or suggestions would be appreciated.

. Alice, I was having blood transfusions every two weeks until I started taking a superfood from bio- age.com called f3. I haven't had a transfusion for a year. Don't know how it works but it did for me. Sending prayers.. Diane

[BigMick]

Originally Posted by Sunnsurf@bellsouth.net

. Alice, I was having blood transfusions every two weeks until I started taking a superfood from bio- age.com called f3. I haven't had a transfusion for a year. Don't know how it works but it did for me. Sending prayers.. Diane

I have read what the company says about this product, what I want to know is how did you initially find this product and how long did you take the product before you noticed any effects and improved results. e.g. did you see your Hb level rising and what level did it get to when you stopped having transfusions.
Regards

[JohnL]

Hi Alice: A year ago I was getting 2 units of Reds every 7-11 days. I had to go below 8 on my HGN before I could qualify. I switched to MD Anderson in Oct 2012. Their lst treatment was with Cychosporin but it did not work and I was switched to Revlimid 10 CM on 3/9/13. I had 5 more transfusions but after the last on 5/29/13 my HGN went to 9.9 and basically stayed there. On 8/12/35 my platelets dropped to 15 and I had to get a unit of platelets. I stopped the Revlimid for about a month and my counts all went up. We then went to a pill every other day but my platelets dropped to the 50-80 Range. By November, 2013 we went to the 10CM every other day for 21 days and then a holiday for 7 days. This morning my HGN was 10.3 and my platelets were 86. I have now gone 43 weeks without a RBC transfusion.

Around Christmas of 2012 I had a transfusion and the next day I had trouble breathing. One doc said it could be fluid overload and I took water pills for several days. I went to see my hemotologist about this event and he told me to see my cardiologist. After an EKG my heart doc said I probably had a clot in my heart and that I had AFIB. He put me on Coumadin to disolve the clot and said I will be taking it the rest of my life. Six months later I had a cardioconversion and it was like getting a super charge. Even my swollen ankles have gone away.

You didn't say how long your husband was on the Revlimid or the dosage. It took 3 months to begin to work for me at the 10 strength. If he took the 5 it might be even longer. It seems with me that when it did kick in I should have gone to a lower strength. I asked my doc at MD Anderson if I should take a 5 every day but he said "if it's not broken, don't fix it"--we both laughed. Seems these medicines are all so new that the doctors don't have a real plan of attack as to what will work or not.

I think our bodies are under teriffic stress and the heart should not be overlooked. I had AFIB and never knew it. Perhaps my MDS brought it on.

Good luck and good health. Hope I was able to help you with my experiences.

John L

[maggiemag]

Keep in mind folks, that the original post in this thread was 2 and a half years ago!