A good reminder, I sure counted on generosity of others through the many transfusions that I have had.

I have been wanting to ask if I would be eligible to donate considering my history, any of the other survivors here donating?

Hope that you and Jo are doing well, and praying for the cure for Jo.

DaveJ

I have been told that leukemia survivors are not to give blood, but if anyone has other information, please let us know -- daveB

I agree Dave.

In fact, I saw this post the day I saw my onc and she confirmed, no blood donations allowed.

Debbie,

How is Jo? Does she know how many more chemo treatments she had ahead of her?

Praying
Julie

Thanks Debbie this is an important issue

Julie,

Jo is doing ok. They are trying to increase her chemo dosage again and so she is back to transfusions and platelets as you can tell by my recent post.

Her white count is staying too low for too long. It was .6 this past lab draw yesterday and her last round of chemo was the week before Christmas and she had a shot right after chemo to help raise them. So far, the shot hasn't helped much.

This is the reason she is on the decitabine maintenance chemo. Her body just can't handle the raised chemo so she has had to do it longer than normal at a lower dose. She has 3 more rounds to do.

It always makes me nervous when they want to raise the chemo dosage. I always think, what did they see in her labs or BMB, but so far they have showed she is still in remission.

I did want to ask though if any of you experienced severe cramps due to low white blood count and a little dehydration? My sister's husband had to get her some pickle juice to drink last night because her hands cramped so bad. Is this a normal thing?

Debbie,

I never experienced cramps associated with low white counts as my marrow always responded pretty well to Nuepegen shots. I do suffer for cramps usually in my feet and calves almost associated with not drinking enough water. I would also check Jo's magnesium and potassium levels. I am sure her med team are tracking those routinely as they can be natively impacted during chemo.

Pickle juice, huh-must be a southern thing :-)

I would not read more into the desire to increase Jo's dose. If she relapsed, you'd know. I just think the thought is to give us as much as we can tolerate. But always remember, I had half the dose of HiAriC and I'm still in remission, by the grace of almighty God.

You are such a great and supportive sister. She is truly blessed to have you with her during her fight.

Blessings,

Julie

Julie,

Good point about the magnesium. I was having atrocious leg cramps and spasms in my hands. My magnesium was low normal to below normal. I now take a supplement, and am much much better. Almonds are very rich in magnesium. There are few dietary ways, however, to replete this ion, so supplements are advised. Many people have magnesium issues after transplant. Margaret's Jimmy is a case in point.

As far as donations go, people with a history of leukemia cannot give blood. That is understandable. What isn't is that people with hemochromatosis (a genetic iron overload disorder) cannot give blood, even though those receiving transfusions are often initially iron depleted.

I know that all of us would give to help others. Our hands are tied, so we should all turn to other ways of helping our brothers and sisters with this disease or its aftermath.

Cliff

They had me on this post transplant and I continue to take it to this day

http://mgplusprotein.com/index.html

When I started to get back into my cycling training I noticed that I did not cramp at all anymore where I used to on 4 or 5 hour rides. it was this stuff that stopped it.

Pickle juice is well known in the endurance sports world as a remedy for cramps, never used it myself, don't think I could keep it down.

DaveJ

Yes pickle juice is used for sport endurance but probably not as much around cooler places as it is in the hotter southern areas. I play tennis and since we live in Texas, the heat is almost unbearable in the summer months. We played a sectionals tournament in Dallas in August this past year and the temperature on the courts in the middle of the day registered 127 degrees. That was on the court though, it was lower off the courts of course, unfortunately, we were on them. Needless to say, there were numerous withdrawals for heat reasons. Pickle juice was very popular that weekend! It is sold in little jars around here so you don't have to buy jars of pickles to get it, :) It does help to prevent cramping and dehydration.

A little southern learning for you Julie, lol. I would love to have a milder climate such as Utah. Many years ago, :), I was in Provo Utah to play volleyball at BYU. It is beautiful in that area but trying to breathe in the altitude was something else!!

Debbie