please check these out!

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Offline Christine Mary

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please check these out!
« on: September 25, 2006, 03:08:05 PM »
www.clinicaltrials.gov/ct/show/NCT00001958
www.bloodjournal.org/cgi/content/full/102/4/1529
www.annalsnyas.org/cgi/content/abstract/850/1/120
www.emedicine.com/ped/topic2232.htm
http://content.nejm.org/cgi/content/full/336/13/964
www.thalassemia.com/non_transfusion_2.html


hi everyone- these are links that i copied from another thal forum. they talk about the use of hydroxyurea and other meds for thal major treatment. i was wondering if this is something to be excited about? is there any possibilty of this? i was told by another thal pt

"There's not much literature out there on this. With Beta-Thal major,
>patients have close to 90% fetal hemoglobin, so a modest increase with
>hydroxyurea probably does not make enough difference to make them
>transfusion independent.
>
>Fetal hemoglobin is made up of 2 alpha and 2 gamma chains. Hemoglobin A
>(normal adult hemoglobin) is made of 2 alpha and 2 beta. In beta thal
>major,
>pts can't make beta, so they can't make Hemoglobin A. Thus they make mostly
>hemoglobin F."

any thoughts on this???
thanx
christine

Lauryn's Mom

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Offline Andy Battaglia

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Re: please check these out!
« Reply #1 on: September 25, 2006, 06:05:35 PM »
Hi Chrissy,

We have had some previous discussions about the use of hydroxyurea in thal. It has been used mostly in thal intermedia but there have been some tests on majors also.

http://www.thalassemiapatientsandfriends.com/index.php?topic=253.0

It does help many intermedias avoid transfusions but more research needs to be done regarding its use in major.
Andy

All we are saying is give thals a chance.

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Offline namitha

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Re: please check these out!
« Reply #2 on: October 12, 2006, 02:49:29 PM »
Hi,

I found some info on hydroxyurea that I am posting. I often consider going in for this but I am too scared of unwanted side effects. Atleast transfusion is a known evil!

What are hydroxyurea capsules? 
HYDROXYUREA (Droxia®, Hydrea®) is used to treat sickle cell disease or certain types of cancer. Hydroxyurea is used for treating cancers of the blood, skin, ovary and head and neck. Hydroxyurea is also used to decrease the painful episodes associated with sickle cell disease. Hydroxyurea does not cure sickle cell disease, but may help to control the symptoms when used on a regular basis. Generic hydroxyurea capsules are available.

What should my health care professional know before I take hydroxyurea?
They need to know if you have any of these conditions:
•bleeding problems
•blood disorders
•dental disease
•having intramuscular injections
•infection (especially virus infection such as chickenpox or herpes)
•kidney disease
•an unusual or allergic reaction to hydroxyurea, other chemotherapy, other medicines, foods, dyes, or preservatives
•pregnant or trying to get pregnant
•breast-feeding

How should I take this medicine?
Take hydroxyurea capsules by mouth. Follow the directions on the prescription label. Swallow the capsules with a drink of water. Do not take your medicine more often than directed. Finish the full course prescribed by your doctor or health care professional, even if the capsules make you feel unwell. Do not stop taking except on your prescriber's advice. If you have difficulty swallowing the capsule, carefully open it and empty the contents into a glass of water. Drink at once, some ingredients may not dissolve, but float on the surface; this does not matter. Make sure to drink all of the water to get the entire dose. Rinse and wash the glass thoroughly after using.

Hydroxyurea is a medicine that must be handled with care. People who are not taking hydroxyurea should not be exposed to the powder in the open capsules. If the powder from the capsule is spilled, it should be wiped up immediately with a damp towel. The towel should then be put in a closed container such as a plastic bag and thrown away.

What if I miss a dose?
If you miss a dose, skip that dose unless you remember within a few hours, or your prescriber or health care professional tells you otherwise. Do not take double or extra doses. If you vomit after taking a dose, call your prescriber or health care professional for advice.

What drug(s) may interact with hydroxyurea?
•didanosine, ddI
•medicines that affect your blood such as cilostazol or warfarin,
•other chemotherapy agents may increase the side effects seen with hydroxyurea
•stavudine, d4T
•vaccines

Talk to your prescriber or health care professional before taking any of these medicines:
•aspirin
•acetaminophen
•ibuprofen
•naproxen
•ketoprofen

Tell your prescriber or other health care professional about all other medicines you are taking including nonprescription medicines, nutritional supplements, or herbal products. Also, tell your prescriber or health care professional if you are a frequent user of drinks with caffeine or alcohol, if you smoke or if you use illegal drugs. These may affect the way your medicine works. Check before stopping or starting any of your medications.

What side effects may I notice from taking hydroxyurea?
Side effects that you should report to your prescriber or health care professional as soon as possible:
•low blood counts - hydroxyurea may decrease the number of white blood cells, red blood cells and platelets. You may be at increased risk for infections and bleeding.
•signs of infection - fever or chills, cough, sore throat, pain or difficulty passing urine
•signs of decreased platelets or bleeding - bruising, pinpoint red spots on the skin, black, tarry stools, blood in the urine
•signs of decreased red blood cells - unusual weakness or tiredness, fainting spells, lightheadedness
•burning, redness or pain at the site of radiation therapy
•lower back pain
•sore mouth or lips (ulcers)
•vomiting

Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome):
•constipation or diarrhea
•loss of appetite
•nausea
•red face
•skin rash, itching

What should I watch for while taking hydroxyurea?
Visit your prescriber or health care professional for checks on your progress. You will need to have regular blood checks. The side effects of hydroxyurea can continue after you finish your treatment; report side effects promptly.

Hydroxyurea may make you feel generally unwell. Report any side effects as above, but continue your course of medicine even though you feel ill, unless your prescriber or health care professional tells you to stop.

When given alone or with other chemotherapy agents, hydroxyurea may decrease your body's ability to fight infections or increase your risk to bruise or bleed. Call your prescriber or health care professional if you have a fever, chills, sore throat or other symptoms of a cold or flu. Do not treat these symptoms yourself. Try to avoid being around people who are sick. Call your prescriber or health care professional if you notice any unusual bleeding. Be careful not to cut, bruise or injure yourself because you may get an infection and bleed more than usual.

Hydroxyurea may harm your unborn baby. You should contact your prescriber immediately if you believe or suspect you or your partner has become pregnant while you are taking hydroxyrea. Both men and women must use effective birth control continuously while taking hydroxyurea. It is recommended that you use 2 reliable forms of contraception together.

Avoid taking aspirin, acetaminophen (Tylenol®), ibuprofen (Advil®), naproxen (Aleve®), or ketoprofen (Orudis® KT) products as these may hide a fever, unless instructed to by your prescriber or health care professional.

Be careful brushing and flossing your teeth or using a toothpick while receiving hydroxyurea because you may get an infection or bleed more easily. If you have any dental work done, tell your dentist you are receiving hydroxyurea.

Drink several glasses of water a day. This will help to reduce possible kidney problems.

If you are going to have surgery, tell your prescriber or health care professional that you are taking hydroxyurea.

Where can I keep my medicine?
Keep out of the reach of children in a container that small children cannot open.

Store at room temperature, approximately 25 degrees C (77 degrees F). Throw away any unused medicine after the expiration date.

Andy, Is it worth the risk? Do tell me please?

Regards,
Namitha
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

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Offline Christine Mary

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Re: please check these out!
« Reply #3 on: October 12, 2006, 03:08:55 PM »
hi namitha,

my cousin olivia is an intermedia and she is 2 1/2 yrs old. she has been on hydroxyurea for almost 3 months and it raised her hg from a 6 to a 9! she has minimal side effects if any and she looks great.
since she is younger, youd think shed be messed up from it, but shes doing so much better!
hope this helps.

xxx christine

Lauryn's Mom

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Offline Andy Battaglia

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Re: please check these out!
« Reply #4 on: October 12, 2006, 03:20:15 PM »
All medicines have listed side effects, and some people do find hydroxyurea to be harsh, but many use it with few if any side effects. The same can be said for every drug. Desferal is too harsh for many people, resulting in under-compliance. L1 causes neutropenia in some patients. Exjade caused a severe rash in the wife of one of our members and she had to stop. The point is, that these side effects generally happen in only small minorities of patients. My own asthma drug is implicated in the deaths of some asthmatics. Should I stop taking the only drug that has ever worked for my asthma? These are choices we are forced to make and often the only answer is to try the drug and see if you tolerate it. If a drug proves too harsh, then you must discontinue it, but the fear of side effects is not a good reason to not even try the drug.

Hydroxyurea works for many patients and is worth at least a try to see how well you tolerate it. Thals go through much worse than this, so be optimistic and hope that you are one of the many patients who can successfully use this drug. As we have seen with Christine's niece, it is a drug with some real value.
Andy

All we are saying is give thals a chance.

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Offline olivia mary

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Re: please check these out!
« Reply #5 on: October 13, 2006, 05:45:36 AM »
Dear Namitha,
 
Hi my name is Kathleen Olivia's mom. (christine's cousin).
Olivia is a little over 2 1/2 yrs old and was diag. with thal intermedia this year. Her Hb was getting very low, at one time a 6.3. The doctors started to talk to us about transfusions. Then we heard about Hydroxyurea from a dr. who used it it many sickel cell pts. and some thal intermedias with good results. He thought we should give it a try with Olivia. We did alot of research and decided to try it. Thank God we did. She is doing so good now. At 8 weeks on the medication her hb was a 9.0. (we go back to the dr on 10-18). She also takes folic acid every day too. I know the side effects are scarey I was so worried about them.( I mean this is my baby girl and i would never want to see her sick from this medication) Olivia has not had any problems to date. She has a beautiful color to her face  she eats and sleeps better and has so much energy. Now after seeing what it has done for her I would say it it worth a try. I will continue to keep you all posted. I hope this helps.

**Also you will be closley watched by your doctor while on this medication so if there is anything going on they will  be able to take action.....what if it does work for you too?***

Love Kathleen

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Offline §ãJ¡Ð ساجد

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Re: please check these out!
« Reply #6 on: October 13, 2006, 05:54:41 AM »
Hi Kathleen,

This is really a great news and I totally agree with you that Thal. InterMs. should give it a try. After all any oral medicine is better than TransX which has it's own side effect (iron overload and then use Desf. and it's side effects i.e pain etc)

Just give it a try and if things don't work out smooth, just stop using it; Simple!

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline namitha

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Re: please check these out!
« Reply #7 on: October 13, 2006, 03:01:42 PM »
Hi Christine, Andy, Kathleen and Sajid,

Thanks for the info. After reading that Olivia is tolerating hydroxyurea well, I have decided to speak to my hemato about it. I will keep you posted. Thanks for dispelling my fears. I was scared that it was a chemo drug.

Thanx a bunch.

Regards,
Namitha
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

Re: please check these out!
« Reply #8 on: October 13, 2006, 03:14:24 PM »
Namitha

Dr. Sharmila Chanda of Kothari Medical Center, Kolkata, has been using the drug.. and I do believe that she is getting very good results.. you might want to speak to her if you get the opportunity..
She has a full fleged thal Unit at the medical center. I think she is the best in Kolkata onThal.. I have been to her a number times...

Shikha

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Offline Andy Battaglia

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Re: please check these out!
« Reply #9 on: October 13, 2006, 03:35:39 PM »
Hydroxyurea is used in chemotherapy also, but the dosage is higher and it works by inhibiting DNA synthesis and thereby the cell division of cancer.

From http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Hydroxycarbamide

Quote
Hydroxycarbamide may be prescribed for conditions other than cancer. The drug dosage may then be much lower and therefore these side effects will probably not occur.

It has shown much usefullness in many intermedias and has also had trials in majors with some success in totaly eliminating transfusion dependency.

I have mentioned this study before but it is worth repeating.

From http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12702505&dopt=Abstract

Quote
We now report a marked elevation of total Hb levels with HU that permitted regular transfusions to be stopped in 7 children with transfusion-dependent beta-thalassemia... We conclude that HU can eliminate transfusional needs in children with beta-thalassemia major.
« Last Edit: October 13, 2006, 11:48:24 PM by Andy »
Andy

All we are saying is give thals a chance.

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Offline namitha

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Re: please check these out!
« Reply #10 on: October 24, 2006, 09:17:58 AM »
Hi Shikha Aunty and Andy,

Thanks for the info. I am going to give it a try. Will keep you posted.

Regards,
Namitha
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

 

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