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Kathy:
I am sorry to hear about your father. My heart is with you and evryone struggling with this disease. May you and your family find peace and comfort in each other as you go through the holidays.
Dusty

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For what it’s worth, I would caution the use of supplements unless their use is measured with routine blood work. This is especially true for calcium. Betty had a hypercalcimic event that was about as scary as anything we have gone through. Apparently some of the biproducts of leukemia behave chemically the same as the causes of osteoporosis. The result is that excess calcium is not removed by the kidneys. A build up of calcium is manifested as extreme constipation (excess calcium pulls water out of the colon,) weakness, lack of coordination, confusion, disorientation. She was hospitalized for four days to get the calcium back down. After this was over, I learned that ocassionally the first indication of leukemia is the hypercalcimic event. When Betty’s calcium got back under 10, we found she had low magnesium and phosphorus. We used over the counter mg supplements (250mg 2-3/day) to get the magnesium back up, and “Neutraphos” to get the phosphorus back up.
These electrolytes can be checked any where they do CBC’s. I would suggest they get checked at least every two weeks.
Stay Strong

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Hi Margaret:
Betty was having lots of shakes, especially in her hands and arms. Last week she went off her pain meds (Oxycontin amd Oxycodone,) and is now on Morphine. The shakes and tremors are barely noticable. Other causes for the shakes might be poor oxygenation, low Hgb. Our nurses will often put warm towels on her arms to help with blood draws. He almost sounds hypothermic where the body will pull the blood away from the extremities to keep the body core oxygenated.
Good Luck
Don

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We also toured the facilities at U of Minn at Fairview. We found them to be warm, friendly, competent and very organized. We were seeking a cord blood transplant as Betty was not able to tolerate chemo very well, and we did not have a related donor. With cord blood, there are some advantages in that you may only need an HLA match of 3 or 4 out of 6, versus 6 out of six for MUD. We were looking at a partially ablative transplant. The concept is that once the stem cells engraft, they will produce enough antibodies to fight off new leukemic cells as they develop. Unfortunately in our case, Betty was not able to get into remission, so we were not able to proceed with the transplant.

Here are some links to some cord blood sites:
Good Luck and stay strong.
Don
http://www.nationalcordbloodprogram.org
http://www.nationalcordbloodprogram.org/about/program_overview.html
http://www.cancer.umn.edu/page/research/trsplant/cord11.html

http://www.cancer.umn.edu/page/research/trsplant/cord1.html#family

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Of the four words, I think Hope is the most important. You have a chance and it is worth fighting for. You are in our prayers.

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Betty started been taking Hydroxyurea to help get her white counts down. But the first week her platelets dropped to 7K. So she was transfused with platelets and given Amnicar (Aminocaproic Acid.) The risk for clotting Neil spoke of is real, and she has had a history of pulmonary emboli – but that episode was associated with high platelet levels.

Good Luck

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Marie:
Stay strong. Know that we are with you and that we care.

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