STARTED THALIDOMIDE

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• February 2, 2006 at 4:01 am #11608
  diner

  Member

  Hi everyone,
  I started the Thalidomide 50mg last week. So far I have just had headaches and some dizziness but as my body is adjusting to it, I’m doing better. My platelets were only 2,000 today but the doctor doesn’t think the platelet transfusions are really helping (they only help for a couple of days). He’s going mostly by my body’s indications of needing them. He’s trying me on Amicar which is used to prevent or treat bleeding and works to form clots.
  I’m still taking the Essiac tea capsules and
  L-lysine for mouth sores so I might get brave and try some pineapple. Dee

  February 2, 2006 at 8:23 am #11609
  Sandy L

  Member

  Good luck Dee

  I will keep you in my prayers.

  February 3, 2006 at 4:09 pm #11610
  gemloyear

  Member

  Hi Dee, I pray that the thalidomide works for you, and you become stronger and healthier day by day.
  Best wishes Ellie

  February 3, 2006 at 7:26 pm #11611
  patti

  Member

  Dee,

  I hope this trial works out for you. What a blessing it would be. Take care of yourself. And go for the pineapple through a straw for those platelets.

  Patti

  February 4, 2006 at 1:06 am #11612
  diner

  Member

  Thanks to all of you for responding. I juiced my first 1/2 pineapple and it was delicious. I have some questions:
  1. How long does it take to know if it’s helping? 2. Why juice it instead of just eating it? 3. Why does it raise platelets?

  I’m starting AMICAR (Aminocaproic Acid) today since my platelets won’t go above 2-3. I guess it’s used to prevent or treat bleeding. It works to form clots.

  Dee

  February 4, 2006 at 1:40 am #11613
  patti

  Member

  Hi Dee,

  My MIL noticed a change in her platelets about a week after she’d been doing the pineapple daily. She actually does eat the pineapple because she can’t stand the thought of throwing away any portion of any piece of food (including the pulp)! That said, if you’ve still got mouth sores that might be hard. I would do what’s easiest for you. Also, when my MIL’s platelets go below 12 (because that’s when she starts to have bleeding issues) I always have her increase her pineapple to one whole one a day for awhile. It usually takes her a week to go up enough to stop bleeding. If you can, I would encourage you to use a whole pineapple a day for awhile. If I remember right you said your last platelet check was in the 2000’s??? For you, right now, more pineapple is better. We asked mom’s naturapathic doctor if she understands why this works and she has no idea but she had some theories. Most enzymes work in the digestive system. But there’s at least one that she knows of that helps the sinuses. It’s bromelain. Well, bromelain is the enzyme that happens to come from, you guessed it, pineapple. She thinks there is something else to the bromelain that they don’t understand how it functions. Why is it that it helps sinuses? So, while she didn’t have any concrete answers, she did understand that bromelain appears to be an enzyme that plays a role in many parts of the body other then the digestion. So bromelain goes a little against the thought that enzymes only help in our digestive system.

  Also, I can take bromelain tablets for my sinuses (I take it daily), but it didn’t do a thing for mom’s platelets. So I’m not sure why a pill works one way but not another. I do know that in general, whole foods are always better than supplements. So, eat your pineapple, and enjoy it! I know my MIL does.

  Take care, Dee.

  patti

  February 4, 2006 at 3:27 am #11614
  diner

  Member

  Patti, Thanks so much for the information. I will go ahead and increase my pineapple to 1 a day for awhile. I’ll have another blood test next Wed. and I’ll really be anxious to see if anything has changed. Yes, my platelets were only 2,000. I had a couple of mouth hemorraghes but they are gone. Yeah! Is your mom the one who also takes Esiak tea capsules? Mine say to take them for a month and then go off a week.
  Dee

  February 4, 2006 at 4:48 am #11615
  Ensnee

  Member

  Dee, I wish you good luck on the Thalidomide. I’m really, really hoping it helps.

  The pineapple has done wonders for Hans’platelets twice, now. I think maybe juicing it makes it easier to tolerate in terms of making your mouth sore. I know in the past when I’ve been eating a lot of it, it did make my mouth sore.

  many hugs,
  Esme

  February 4, 2006 at 6:12 am #11616
  diner

  Member

  Esme,
  Thanks for the well wishes and I think you’re right about juicing being easier on the mouth. I just ate a couple of pieces and it seemed to be irritating but the juice isn’t. I sure hope the Thalidomide works too. If not, I don’t know what will happen. I don’t know of anyone who has been on it though, but heard it can help in a lot of cases. Thanks for the hugs.

  Dee

  February 4, 2006 at 6:52 am #11617
  patti

  Member

  Hi Dee,

  Mom is also taking the essiac tea capsules. She started by taking one cap. 2x’s a day. She’s now taking one cap. 3 x’s a day. We’re trying to avoid the bowel issues (runs). I’ll be anxious to hear how your next blood test is. Please share with us. Take good care.

  Patti

  February 4, 2006 at 7:51 am #11618
  sugarwhale

  Member

  Dear Dee,
  I think it’s MY mom who takes Esiak Caps. She takes 3 caps a day and has done this since Dec. 5. They have resulted in a big improvement, and our doctor urges her to continue taking them. You can avoid diarrhea and any sort of tummy ache by: 1/ drinking lots and lots of pure water and 2/ always taking the caps on an empty stomach.
  Best of luck!
  ~~~ Janet

  February 5, 2006 at 12:24 am #11619
  franm

  Member

  Dear Dee:

  Just would like to wish you the best of luck and hope that everything you are doing will work.

  Franm

  February 5, 2006 at 6:03 pm #11620
  seekay

  Member

  Hi all,

  I think the runs from the Essiac comes from the detoxifying effect the herbs are having, helping the liver greatly, which is good. You should be happy to have some diarrhea from the capsules; it means they are working!

  Re: mouth being sore from eating pineapple–try avoiding the pineapple parts near the skin–only eat and juice the part that you can cut well away from the skin. Also, ask your grocer to pick out/show you how to pick ones that are just ripe–these are less acidic.

  Fresh fruit ALWAYS better than canned or supplements. ALWAYS, because of the potent phytochemicals, oxidyzing enzymes in fresh fruit and veggies. Any sort of cooking/preservation destroys colloidal content of foods, that’s why raw diet, for example, so healthful.

  Bromelain and other digestive enzymes are often sorely lacking in our bodies as we get older, meaning that we don’t absorb nutrients from the food we eat. Another fruit to try would be papaya, which has another important digestive enzyme (papase??). Also, investigate hydrochloric acid and pancreatic enzymes–there is a brand called Wobe-Mugos used in Gerson therapy. I don’t think you can buy it in the US, but there seems to be some sort of alternate I saw on a website awhile ago. Nature’s Sunshine makes digestive enzymes. Also, there is a company called AbsorbAid that makes a product all plant based. We take it sometimes for indigestion–works extremely well–has bromelain, papase, etc.

  February 7, 2006 at 1:51 am #11621
  Terri

  Member

  Hi Diner hope all goes well with the New drug.
  Keeping everyone in my prayers.

  February 7, 2006 at 2:44 am #11622
  diner

  Member

  Patti, Thanks for the info on Vit. K. I will mention it to my doc. I just started the Amicar.
  Thanks to everyone for your interest and advice.
  I started juicing last week and am still taking the Essiac tea capsules, but the ones Janet is getting are stronger and cheaper than the ones I’ve been taking. I’ll prob. get them next time.
  I always take them on an empty stomach BUT my bottle says to go off of them for a week. Does yours say that Janet?
  I had a lot of loud rushing in my head this weekend. I went in for a blood test today and my HGB was only 7.8 and my platelets were still 2. I am going to get both red cells and platelets tomorrow. I have had some blood sores in my mouth from the low platelets. I was hoping the pineapple would have increased my platelets but know it’s too soon. At least they didn’t go any lower.
  I’ll keep you all posted.
  Dee

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