Having breastfed my own toddler this past year during his leukemia treatment and having had so little luck getting questions answered by both physicians and lactation experts (though many on this list did really try to help me) related to chemotherapy, breastfeeding and leukemia that came up for myself, I feel that I want to contribute to this discussion in some way.  I have been contacted by several mothers of breastfeeding babies with leukemia since I posted an article about my experience on line and I am always so discouraged by the inability to get information and support for them, as so little seems to be known.  It is so rare for babies to be diagnosed with leukemia and for toddlers (like my two-year-old) who are so diagnosed to be still breastfeeding.  These mothers are so desperate. 



It sounds as though this baby is going to receive a bone marrow transplant, which means that her entire bone marrow will be killed off through high dose radiation, and then a donor's bone marrow introduced to re-grow new hopefully healthy marrow.  This is a very dangerous procedure, I would think especially for such a little baby - it must be their only hope of saving the baby's life because bone marrow transplantation is not usually recommended as a first line treatment (from what I understand) because of the high risk nature.  This mom is very stressed (as I understand it babies diagnosed under a year old are high risk), and probably being able to provide breast milk feels like the one and only thing she can do to possibly help save her baby's life.  At least that is how I felt, and my son's prognosis was fairly good from the outset.  



One fear is that the baby's body will reject the donor marrow cells, which results in a dangerous and painful condition.  



I found one citation that seems to suggest that breastfeeding could be protective against this, but not being medically trained, and not knowing the exact procedure the child is having) I have no idea whether this applies in this mom's case or not.  



http://bloodjournal.hematologylibrary.org/cgi/content/full/113/8/1829 



I'd like to know what the doctor's research basis is for his conclusion that breast milk would in some way defeat or put at risk the ability of the donor marrow to grow.  I can sort of understand how this MIGHT be the case, but he must have a citation, and as a breastfeeding counselor, that is what I would ask for.  Then we would have a citation to work with, and see what research response has been made to it if any. 



Please, I implore some of the highly trained medical professionals on this list who are also so knowledgable about breastfeeding and breast milk to give some thought and time to how breastfeeding and breast milk work with leukemia and more broadly chemo and bone marrow transplantation.  There aren't many folks who need to know this but with the rise in breastfeeding rates, more will be diagnosed while nursing (and with rising survival rates, more will live, we hope).  I have had several questions come up from moms with nursing infants in cancer treatment wonder whether there is any risk that they, the mothers, might absorb some of the chemo drugs from the infant's sucking, because we are told to wear gloves and masks when we administer oral chemo at home, and change diapers and that we should scrupulously avoid contact with the baby's bodily fluids during chemo (which in leukemia treatment is 3 years).  The moms worry, especially if they become pregnant if they can absorb chemo through breastfeeding but nobody knows or has even any educated guesses.  So we all just breastfeed (or not) and hope for the best, because in the end our kid has CANCER. 



Sorry to be so personal but because of my experience and one article I have posted on the Internet about leukemia and breastfeeding, I do get questions from moms and I am struggling to find ways to get them info.  They are so stressed at that point that they just cannot do the research for themselves.  One mom's baby ended up getting too sick to be able to even breastfeed before I was able to get her any information (from a runaway fungal infection), and wasn't expected to live. 



There isn't much out there, but I keep thinking that someone with a strong scientific understanding of breast milk's effect on the immune system, and also on drug absorption and how that works, could probably reason out some answers, or at least hypotheses and maybe this would be an area of research, since we are always wanting to under more about how breastfeeding improves immune response generally.  There isn't a big clientele for it, and the oncologists are not interested enough to look into it themselves but they always tell me if I "hear anything" let them know. 



Thanks. 



Pam Pilch, JD 

Lamaze Certified Childbirth Educator 

LLL Leader, NGA 

Website Update on my son's leukemia:  http://www.caringbridge.org/visit/jonathanpilch 





             ***********************************************

Archives: http://community.lsoft.com/archives/LACTNET.html
To reach list owners: [log in to unmask]
Mail all list management commands to: [log in to unmask]
COMMANDS:
1. To temporarily stop your subscription write in the body of an email: set lactnet nomail
2. To start it again: set lactnet mail
3. To unsubscribe: unsubscribe lactnet
4. To get a comprehensive list of rules and directions: get lactnet welcome