4 months on Revlimid

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• February 4, 2007 at 5:12 am #16396
  LuAnn

  Member

  Hi Pat, Dad has had a slight fluid problem and we treat it by monitoring his weight and giving him Lasix and potassium daily. However 2 weeks ago he started Revlimid and he retained much more water than usual in his abdomen and legs. The dr. added a third dieuretic to take nightly along with 2 Lasix and potassium a day. He was also prescribed Flomax to help his prostrate which also helped eliminate the fluids. The dr. stopped the Revlimid on Friday and dad lost additional fluid since then. If Chuck takes Lasix or another dieuretic check with the dr. to see if he should take potassium also. If you don’t take potassium with the Lasix the pulse is affected and can go very low. Extreme fatigue, tiredness, pale color and coldness are the symptoms. My dad didn’t take the potassium the day he received Lasix during his transfusion and his pulse went down to 40. I gave him a banana, one potassium pill and a glass of orange juice at 1/2 hour intervals and his pulse went up to 64 and he felt much better. I’m not aware of the cornsilk Patti references but will research it.

  How low did Chuck’s HGB go to get 3 units? I’ve never heard of someone getting 3 units before. I know dad gains about 3 lbs. when he gets 2 units of blood and it takes a few days to get rid of it.

  Hope this helps.

  February 4, 2007 at 7:03 am #16397
  patti

  Member

  Pat,

  Mom’s kidney function tests all show “normal” but it’s obvious from looking at her ankles daily that her kidneys are not “normal.” I have no idea what idiot designed that test but it’s definately not accurate in mom’s case.

  LuAnn is absolutely right about taking potassium if one takes lasix daily. This is a must as potassium and sodium are flushed out with the fluid and they are what regulates heart rhythm.

  LuAnn, cornsilk and dandelion root are herbs that are natural diuretics. They do not flush potassium and sodium out of the body the way lasix does. They are much safer. Mom takes them in tincture form (liquid) because they are more concentrated that way and work very fast.

  She had major fluid overload on Wednesday night. We gave her both tinctures and within an hour her body started flushing fluid she was feeling much better. By the next day she had flushed out enough fluid her blood pressure was normal again and she no longer had heart/lung pain (she can never tell which one it is).

  Hope this helps.

  patti

  February 4, 2007 at 4:38 pm #16398
  Maryvillepat

  Member

  Luann & Patti: Chuck’s hgt was 6.9 when he was given 3 units. It was his choice, but the nurse suggested it, and the doctor approved it. He is only supposed to take Lasix when he gains 3 pounds, which he hasn’t done. They gave him potassium in the hospital, but I think his second CBC showed it had come back up to normal. I agree that he must ask his doctor about taking it all the time, however. I take BP meds and must also take 20mgs of potassium daily. His ankles are only slightly swollen right now. His BP is always low, which I’d kill for! It is never dangerously low, however. How complex our bodies are! I will tell Chuck about the tinctures, however. Thank you both for your responses.

  February 7, 2007 at 6:58 pm #16399
  Maryvillepat

  Member

  As of today, Chuck is off Revlimid. His doctor said perhaps he is a so-called slow responder, and that if he wanted to stay on it longer, it was up to him, but his advice is for Chuck to go back to Vidaza. It worked well for him, he just didn’t like the side effects. The doctor said it might not work again, and pretty much suggested that if not, the only thing left is a BMT. He said Chuck is a candidate despite his age, but I don’t think Chuck will choose that route, as it seems it’s the most iffy of all of them. It is too bad, but must be faced with grace and courage, and hope. Easy for me to say, I guess. His hgt was 7.6 after three units of blood two weeks ago. Since he had all that fluid accumulation from it, he is only take two units tomorrow,and they’re including Lasix. He will begin the Vidaza again in two weeks. Pray with me that it will work!

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