Carao: Has Anyone Ever Tried This Product?

Lloyd, my shipment is not arrived yet...not sure if I have given my phone details too while placing this order. Pls let me know if I can do anything to track my shipment.

regards..
mudit

Hi Sis :
its nice to hear that, her pre-transfusion Hb is good ..  Good Job Sis, it's the result of your good care behind  her maintained Hb on good levels  ...
i hope & wish that, it  will increase in upcoming days.... Best of Luck ..

Take Care
Umair

Mudit: there is no tracking information on these airmail shipments.  Since tracking from Costa Rica is not computerized, we have found it to be too slow to be useful.
--
Lloyd

Hi Lloyd,

Transfusion regimen vary from place to place. Like here at Jamila Sultana Foundation in Rawalpindi they try to keep the pre transf. HB above 10 all the time by giving less blood quicker to keep overall health good. In my case its after 10 days. They would transfuse even if my Hb is slightly above 11 instead of calling back again in a few days. The next transfusion however would be given later than usual. (eg 15 days instead of 10)

Andy,

The goal is to have pretx hg levels between 9 and 10.  They thought that below 9 was too low and can interfere with growth and cause the spleen and bone marrow to expand. 

We did receive a lot of info - if there are any other questions you are welcome to ask while it is all fresh in my mind 

Sharmin

Hi Lloyd,

As you can see in Sharmin's post that Dr Vichinsky told her that pre transfusion hb should be in between 9 and 10,so it won 't effect bone marrow ,growth and spleen,so it's very normal for my daughter to get transfused at 9.4,even i remember that we even transfused her at 10 in the past.Although,since last few months her hb ahs hovered more between 9.2 and 9.6.

The duration between her transfusions is three weeks,even if this duration can increase and she can hold her hb for a little longer,like two or three months, it would be good.
How high do i need to see her hb for not transfusing? I guess if she can maintain her hb between 10-10.5,i won't transfuse her then.It's definitely better to avoid transfusions,less iron less problems,but if it effects her over all growth and health ,i would obviously opt for the transfusions.

I have increased her dose from two teaspoons to four teaspoons,divided in two doses,morning and evening,lets see what happens when the next transfusion comes.

Andy,

Am i right about the hb levels of 10-10.5 for not transfusing,do you think these levels are enough not to effect a child's health and growth?

Zaini.

Of course I am not a doctor, but my personal opinion is that the acceptable subnormal HGB will vary among individuals.  If the person is symptomless, with normal energy level, that in my opinion matters a lot. 

I think carao fruit therapy may allow some thalassemics to become symptomless and to maintain stable blood counts without blood transfusions, but at lower than normal HGB levels (perhaps between 9 and 11).  I am hoping that it will help some with thalassemia minor to attain normal blood counts as well.

Zaini,

You are right, it is important to keep hg levels above 9 - that is why the guideline is to transfuse between 9 - 10.  In the past, before the antibody issue, whenever my son would have a hg of 10 or above our doctor would suggest that we wait a week to transfuse.  9.4ish is the perfect pretranfusion hg. 

It is a fine balance between hg levels, iron levels and chelation.  A hg of 9 is important for the bones, growth and the spleen.  If you can get away with fewer transfusions you have less iron and in turn lower requirement of chelating agents which means fewer side effects from chelation.  If you can maintain a hg level of above 9 (with Carao) for a longer duration then you will have achieved all of these goals. 

I think Zainab will do well in this trial - just keep her hg above 9.  I hope to begin using Carao in the future - I just don't want to add anything new since we have just completed his treatment this summer.  So far he looks good - he's holding his hg and things are returning to normal.  No more puffy cheeks:)

Best of luck to everyone in this trial,


Sharmin

The thinking with thalassemia intermedia has been changing in recent years, and it is becoming more accepted to keep the Hb high (above 9-10) so that normal growth and development occurs. In the past, intermedias were not transfused until they dropped to the 7-8 range. With advancements in chelation and blood safety, the dangers from transfusion are greatly reduced, so if it is shown that low Hb is inhibiting development, transfusions are now being recommended whereas in the past, the trade off of slower development over taking blood was the norm. Chelation compliance is the key if this strategy is to work. Supplementing chelation with iron removing antioxidants (IP6, green tea extract, and fermented papaya product which we will be learning much about in the near future) and boosting Hb with Hb inducers (wheatgrass, resveratrol, carao etc) should also be part of the treatment strategy.

Llyod,

I still have not received it too. Sure hope that i can receive it soon coz need to join the rest in giving info whether it's working with my son.

Hi Everyone,

I recieved other two bottles of carao yesterday,Thanks a lot Lloyd.

Yes,my goal is to keep my daughter's hb between 9 and 10,i don't want her growth or physical appearence to be effected in anyway,right now if a person who doesn't know about her thal,when looks at her can't detect a thing,i want to keep it that way.I am trying my best to be compliant with the chelation,her ferritin last checked was 1232,it's still a bit high,i am working to bring it down ,below 1000 will be good.

Best of luck to everyone.

Zaini.

I think carao may be able to stabilize HGB above 9 in many thal intermediate patients.  However, if blood transfusions are routinely given at HGB 9.5, or even 10+, this test might not allow us to know if/when blood levels have become stable and that bt is not necessary to maintain levels between 9 and 10.

Of course, I am not suggesting that anyone modify their treatment practices.  I am only pointing out what may be the limitations of this informal study.

For thal minor, I am hoping to see HGB levels in the normal or near-normal range.  Is there anyone in the carao study who is thal minor?

Glad your other bottles finally arrived, Zaini.

The folks in Oakland would be proud of you Zaini 

Lloyd - I am a thal minor and I would be happy to participate in your trial. 

Sharmin

Sharmin, this carao trial is closed, but if you can find 2 or more other thal minors who will participate (agreeing to post results here, and paying postage), I'll donate the carao for a thal minor trial!

Hi Lloyd,

I am a thal minor and iron defiecent too, but as i told you i didn't start taking it yet cause i don't have all the bottles.

An Update on my son:

I did a CBC before taking carao, the Hb was 6.5 and the Reticulocyte Count was 12.6%. After finishing two bottles till now in around 45 days, his Hb is still 6.5 but the reticulocyte count  is 3.5%. Though the hematologist can not see anything significant about this but i am sooo happy because to my knowledge this means that there is less pressure from the bone marrow on the bones. By the way we never had this reading even at the time when my son was taking the hydrroxyurea. 

manal

Anyone else? 

Sharmin