Blood Donation: Part Two.

So I went to a Myeloma foundation and the person there tried to answer my question on her own. She did advise me to bring this up with my doctor but, as we saw in part one... that is a non-starter.

She stated:

Our bone marrow is constantly producing new hematopoietic cells to replenish the cells that are currently in circulation, working at their various jobs; red cells carry oxygen in the blood stream, various white blood cells fight infection and platelets help our blood clot if we get cut. Each different cell type has a different life span, but they all need to be replaced whether they live days or weeks.

Ok so far so good. 

I have trouble understanding why donating a physiologically safe amount of blood would cause abnormal stress on the bone marrow. 

So here is the problem. I have trouble understanding why they can't understand my concern and they simply NEVER TELL ME WHY? So frustrating. Presumably losing a lot of blood cells at once is going to stress the factories that will need to make new ones in quick time and, under stress, I worry it would be more likely they would go for broken stem cells to make new WBCs that were lost. 

She continues:

I have not read any studies showing blood transfusions caused myeloma to become active. 

Here is the problem with this. People with MGUS will be advised not to donate blood to other persons. So it is very likely that no one with MGUS will donate blood and therefore no one will ever find out if it causes issues. Never mind that with the limited funds for MGUS research NO ONE is going to do a study on this.   

Later on, without my requesting her to she

I wrote to Dr Robert Kyle, who was with the Mayo Clinic for many many years and is most knowledgeable regarding MGUS. He responded to your questions as follows. 

Yeh that is right, Robert A. Kyle, MD, Luminary in Myeloma Research -- that guy, you know the FATHER of MGUS.  He stated:

There is no evidence to his knowledge that donating a sample of blood on an ongoing basis would cause the MGUS to progress.  In fact, he doubts that there is any harm to the recipient, but there is no data in this regard.  As a prospective blood donor, one should tell the Blood Bank that they do have a MGUS and the Blood Bank will probably turn them down as a donor. A larger MGUS could have circulating plasma cells, but that is unlikely to be a problem for the recipient.

Ok but here is the problem... of course there is no evidence. People with MGUS are advised not to donate blood - as he rightly states (and completely contradicts my hematologist /oncologist team).

He goes on to incorrectly state that there is no benefit to donating blood.

There is no benefit in giving a research sample other than “participating” in the research project. 

I have to disagree. There is a lot of benefits to blood donation, in particular with regard to cardiac issues. 

In closing he did provide another good nugget of information:

[he had] wondered if you were referring to the use of plasmapheresis if there is too high a protein level in the blood, thinking it would be similar to donating blood and might explain benefit. He explained that hyperviscosity does not occur in MGUS except for extremely rare situations.

That is good to know. At this point I figured I better just shut the heck up over it. My name was on the e-mails and I don't want to get a "reputation" - I had decided that maybe I just shouldn't donate blood at all.   More in Part 3.