@henfayp ,

I was able to get a transfusion 2 weeks ago, and have felt better ever since (apart from the usual 2-3 day post-chemo blahs). Significantly better.

It's impossible for me to separate all the other variables and credit the transfusion alone as accounting for my improvement, but I would definitely do it again. I was actually able to jog (slowly) a couple blocks during my nightly 2-mile power walk this week, both of which I haven't done in a while.

The official transfusion protocols are pretty hard to work around, and I feel lucky to have gotten what I did, but I would advocate for "the profession" to reconsider their protocols to be a little more flexible.

Various talking points have come up in my discussions with all the people involved. Among them, (quotes are paraphrased, not exact):

"Low hemoglobin affects different people differently. One person might feel worse at 9.0 than another person at 8.0"

"Maintaining a good performance status is one of the best indicators of longer-term survival." (In the context of reducing Abraxane to limit neuropathy and retain physical abilities/activities.)

"It doesn't make much sense to keep getting transfusions if the chemo keeps destroying your bone marrow."

"If you stop/reduce the chemo, hemoglobin should return to normal levels naturally in about 8 weeks."

"Studies have shown that exercise is better than any drug at combating chemo-induced and cancer-related fatigue."

"It's a blood product with all the associated risks, and is also in short supply."

My basic replies and rationale were:

I already have a (supposedly) terminal disease (Stage-IV pancreatic cancer). If there's a bad reaction to the blood transfusion, I can accept that, being no worse than the cancer itself.

If we're spending many, many thousands of dollars on chemo drugs, the cost to infuse a pint of blood is a miniscule add-on.

If I have to reduce or stop chemo in order to raise my hemoglobin to avoid fatigue, but let the cancer kill me, what have I gained? Do I have to choose between having energy and having my cancer under control?

If we're adding palliative care to my cancer care, and I've already tried exercise (couldn't tolerate), sleep adjustments, Ritalin, and reduced chemo, what's next to combat fatigue?

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It shouldn't be so hard. As I mentioned in an earlier post, I believe several months of chronically low hemoglobin is as bad as a temporary, acute low (< 8.0), especially in terms of remaining active and retaining a good performance status.

After caring for my dad in his battle with mesothelioma (and anemia that accompanied it), I can only imagine how much better he might have felt with something as simple as a transfusion. He "didn't meet the criteria" and 22 hours a day in bed did not help him at all.

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As a side note, we reduced my Abraxane by about 15% for the last two infusions, and my CA19-9 has gone up slightly each time. Too soon to call it significant, but not too soon to be suspicious of the correlation.