Question about RBC transfusions

[lbeachbum2]

I receive 2 Units of blood about every 10 to 14 days … how long can this go on … My doctor seems to have a concern about all the antigens that I’m receiving ..he says that it can affect the success of the BMT that I’m currently looking for a donor for ……. anybody have any thoughts????

[patti]

Lots of blood transfusions can do as your doctor said but there is something you can do to help prevent this. The biggest thing is to make sure your blood is irradiated. This is usually a standard procedure for someone they are looking to do a transplant for but you should make sure.

My MIL has had over 70 units of blood over the past 2 1/2yrs. Usually every 14 days or so. She has not built up any antigens and I really think it’s the irradiation that has prevented this. My take is you can go for quite a long time doing tx every two weeks.

Patti

[jga_socal]

You’ve got nothing to lose by experimenting with food supplements.
The normal adult male loses around 1 pint of blood per week to… cell death. Luckily, the bone marrow of healthy stem cells produce replacements. Red blood cells have a life of around 110 days, or 16 weeks. So if you are getting 2 pints every 10-14 days, that means your stem cells have pretty much quit making ‘healthy’ RBCs. Your deficit is close to 100%. In my case, I think my RBC deficit is 40-50%, I get 2 pints every 5 weeks.
I’m experimenting with food supplements to see if they have an effect on my RBC. The question I want to answer is, “Does the inability of the BM stem cells to make health RBC/WBC/Platelets have anything to do with cellular nutrition?”. What if the stem cells are unable to create lineage partially because they dont have the right building materials? The wide range of responses to erythropoietin products (Procrit & Aranesp) lead to believe these are valid questions. Why does EP work in some people but not in others? I’ve found no explanations. For people in the early stages of mds (low blast count) and with no chromosomal abnormalities this is especially relevant. For 50% of these patients, EP has no effect. Perhaps the stem cells get the message but dont have the building materials to carry out the job? Cellular nutrition…
So, anyway, nothing to lose. Most food supplements are inexpensive. Get copies of your CBCs at every visit. Start taking lots of fishoil, CoQ10, juicing, or what-have-you. Look for trends in your CBC counts as the weeks go by.
What are the chances you’d get mds after hodkins and a stem cell transplant? Seems like extremely low odds. Experiment with your diet. Watch your counts.
Jim

[patti]

Quote:

Originally posted by jga_socal:
What are the chances you’d get mds after hodkins and a stem cell transplant? Seems like extremely low odds. Experiment with your diet. Watch your counts.
Jim

Jim,

I totally agree with you regarding the whole nutrition aspect, etc. But I wanted to address your quote above about the chances of someone getting MDS from a SCT.

The odds are actually HUGE that someone would get MDS or cancer from an SCT or BMT, etc. The amount of chemo given in order for someone to undergo a transplant is large and extremely damaging to the DNA. The bone marrow they get might be new but there are millions of other cells in the body that get affected. If there is any chemo left in a person’s body when they get a transplant it would affect the new marrow as well. So many people on the leukemia board have had transplants but none of them seem to discuss the idea that they may in the future end up with another form of cancer or MDS as a result of the huge quantities of chemo they received for their leukemia/transplant.

If people choose to go the chemo/transplant route that seems well and good. What makes me mad is that doctors do NOT tell them, nor are they obligated to tell them, that they may set themselves up for cancer 10-20yrs down the road. And that might not matter to some people because most of us would say we’d rather have 10 more years then 0 years. I just wanted to make the point that in all fairness it seems like a patient should be told of ALL the potential outcomes of their treatment and one of those is future MDS.

My mom had a low profile breast cancer and did all their treatments and not once did they tell her she might end up with MDS someday as a result. To me, that’s criminal.

Beachbum, hang in there. You’ve travelled a long road but are obviously very strong to have come this far. Just study, learn, and question and best wishes for a healthier year for you.

Patti

[lbeachbum2]

If people choose to go the chemo/transplant route that seems well and good. What makes me mad is that doctors do NOT tell them, nor are they obligated to tell them, that they may set themselves up for cancer 10-20yrs down the road. And that might not matter to some people because most of us would say we’d rather have 10 more years then 0 years. I just wanted to make the point that in all fairness it seems like a patient should be told of ALL the potential outcomes of their treatment and one of those is future MDS.
This is so true … as I have researched it 15% of SCT leads to a secondary cancer such as MDS … as I already know that having a Allogeneic transplant this time is only 50% chance of a long term cure and with that it also triples the chances that I get another leukemia later in life ……… But what can I do … the doctors told me I have a projected survival of 1/12 years and that was 6 months ago ………so I just roll with the punches

[patti]

Beachbum,

Yep. That’s sort of what I meant by saying we’d all rather have ten years then zero years. You have to go on with treatment that will provide you the most likely outcome that you are desiring. It’s an ugly double edged sword, isn’t it?

Take care and hang in there.

patti

[Sandy L]

Hi Beachbum,

Mike was on Noni capsules. It kept him strong against infections. When RBC were low we concentrated on juicing. Beets and cucumbers. Look at some of the past posts and get the exact recipe. I can not remember right now.
For Platelets – Juice Pineapple and black sesame seeds. Ask Patti …. she will know exactly… and I can’t think right now.

Good Luck … You are doing great

[Author]

Posts