Does anyone have myelofibrosis?

[Laurieptsre]

My boyfriend has myelofibrosis.  He will receive the results of his second bone marrow biopsy in about 2 weeks.  The hematologist said he will most likely need a bone marrow transplant.  We are SCARED!  I am planning on working with him on his nutrition.  I don't think a Whole 30 type lifestyle will work for him but I want to get him as close as possible.  He definitely will eliminate sugary/junky foods and I'm trying to get him to go gluten and dairy free  .Does anyone have experience/recommendations with this type of illness?

[praxisproject]

If he takes any immuno-suppressing drugs, he'll need to be careful about how food is prepared, the doctors should give you a very detailed list.

 

Make sure doctors are aware of any diet changes, they could alter blood test results/interpretation.

[Laurieptsre]

Praxisproject - thanks for responding.   I did not even think about the fact that diet changes could alter his blood tests.  We are going to talk to his hematologist about food/exercise.  I take the immunosuppressant drug, cyclosporine, for a skin condition so I have some experience with immunosuppressants.  I  want to make sure I do everything right and possible to help him.

[praxisproject]

It can make big changes in blood work, which can be confusing if you're getting tests done.

It doesn't mean the doctor won't let you do things, but you may need to avoid stacking a diet change on top of medication or treatment changes, as the doctors won't be able to tell what works.

Things like kombucha can be both a benefit and also a risk if you're on an immuno-suppressant, same as kefir and anything else with bacteria, make sure it's doctor approved Fermented meats are usually banned (like salami). Sometimes there is a middle ground, like commercial kombucha which is tested, but check with your doc, everyone is different.