hydroxyurea treatment?

  • 4 Replies
  • 6194 Views
hydroxyurea treatment?
« on: May 11, 2010, 04:45:02 PM »
Our hematologist just emailed me and said that one thing he'd like to begin discussing with me is the possibility of hydroxyurea treatment on Aaron (beta thal major).  I had not ever heard of it before.
He explained it's a drug that can increase fetal hemoglobin in some patients, particularly sickle cell, and there are a minority of patients with thal that may respond to this. 
Aaron's fetal hemoglobin is only 2.6% now, so the hem. said he's not  too optimistic that he'd be a great responder, but thinks it may be worth a try.

Is there anyone who can share more info. on this - especially if your child (or you) has tried this, or if you decided not to go this route, I'd love info. on that too!
Thanks,
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: hydroxyurea treatment?
« Reply #1 on: May 11, 2010, 05:51:32 PM »
Hi Nicole,

Hydroxyurea is used by some of the children whose parents are members here, including our Moderator, Manal's son. I would recommend it 100% and feel that this should be tried with more thal majors, as it has shown to increase the hemoglobin level enough to reduce the amount of transfusions needed in many patients. There is a recent thread about this topic at
http://www.thalassemiapatientsandfriends.com/index.php?topic=3352.msg34138#msg34138

I will disagree a bit with the hematologist because an HbF of over 2 does show some ability to produce HbF. I know of many majors who have very low HbF levels, below 1.5, so 2.6 is not all that low. Some studies have shown a cumulative effect when hydroxyurea is used with natural fetal hemoglobin inducers, such as resveratrol and wheatgrass, so this should also be considered.
Andy

All we are saying is give thals a chance.

Re: hydroxyurea treatment?
« Reply #2 on: May 11, 2010, 06:40:59 PM »
Andy,
Thank you for responding, and for the link to the discussion topic. 
One thing I am not clear on...is this drug (which is primarily used for chemo) a short term med. to get the fetal hem. to be produced at a higher level, or is it a long term med. (like Exjade, though I realize that's for a totally different reason).
I have several online friends whose ped. hem/onc would not consider this med. due to their child's age.  Our son is 3.  Our son was transfused last week into the 11s and we are hopeful he will transfuse every 4 weeks.  Not sure we are ready to go the route of the hydroxyurea, but it is so important for us to have all the info. about it to make a good decision.
Thank you!
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: hydroxyurea treatment?
« Reply #3 on: May 11, 2010, 11:50:05 PM »
Hi Nicole,

Hydroxyurea use is an ongoing therapy. It will only work while it is being used. Although it is used with cancer patients, it is not what one would think of as a chemo drug. It is used because it suppresses the bone marrow, which helps deprive cancer cells of a good blood source. This is used in combination with other drugs which are truly chemotherapy drugs. For this same suppression of the bone marrow reason, it is useful in thalassemia. Blood transfusions also serve this purpose in thal, as the higher the hemoglobin, the less bone marrow activity takes place, which is one of the goals of transfusion. In addition to raising the Hb so that there is a sufficient supply of oxygen, transfusion suppresses the bone marrow so fewer defective red blood cells are produced. The defective red blood cells and unmatched alpha globin chains that are produced by thals create many problems for thals and limiting their production is always a goal in thalassemia. In some patients like Manal's son, there hasn't been any real rise in Hb through hydroxyurea use, but his Hb has stayed fairly level, and his health remains far better than one might expect with the Hb level he normally maintains (Usually around 7). The hydroxyurea is suppressing his bone marrow so red cell production is not overstimulated by the low Hb and his blood remains healthy, leading to a healthy active child who is doing remarkably well in spite of his low Hb level. Avoiding or reducing transfusions is a top goal in thalassemia because taking blood does create problems and the less blood needed, the better it is for the patient.

Hydroxyurea has been shown to be safe at very young ages. There is a full report of the study using hydroxyurea in sickle cell patients at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1895275/  I will quote one relevant bit from the text. The age of the children involved was 2.6 to 4.4 years.

Quote
We believe hydroxyurea is a relatively safe drug for children with SCA but requires periodic monitoring of blood counts and physical examinations. As with any new treatment, hydroxyurea therapy needs to be closely monitored for toxicity, which may prove difficult in developing countries.

Hydroxyurea should be used for at least one and hopefully, two years before making an assessment of its full value. Its effect has been shown to continue to increase into the third year of use and beyond. I will also point out that the next generation of hemoglobin inducing drugs is already in trials, and unofficially, results have looked good so far, far surpassing hydroxyurea in ability to raise the hemoglobin level. I also want to mention that it is not easy to predict how much this drug will help. It has been noted that patients with certain mutations in beta thalassemia have seen better results, so the actual gene defect also has some bearing on the results.
Andy

All we are saying is give thals a chance.

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: hydroxyurea treatment?
« Reply #4 on: May 12, 2010, 01:34:33 AM »
Hi Nicole,

I totally agree with Andy. HU helps too in reducing the size of the spleen and liver and the suppression of bone marrow too helps to prevent bone deformity in addition to an increase in the activity level.

In the last conference that i attended, HU was also advised to thal patients who are transfusion dependent because it can increase the duration between transfusion

Studies showed that taking HU below 20mg/kg is considered a safe dose too.

Please chec this study in the link below
http://www.thalassemiapatientsandfriends.com/index.php?topic=1077.0

manal

 

SMF spam blocked by CleanTalk