Hi Teo,

How much difference do you see in ferritin values? I think many labs give diff results also.

Good for the weight gain with this disease, my mother could do with a few extra kgs, but she did not gain any weight with EPO. Is there any benefit showing with Danazol or is it too early to say?

Asunra, manufactured by Novartis, Switzerland is the chelation drug available here, which is same as exjade. 30 tabs of 400 mg cost is approx US$55. The starting dose is 20 mg/kg. You could send me a pm if you need more information.

Merry Christmas
 

Merry Christmas to you Mdeth and all other members too :)!
Birgitta-A

Ferritin values
 

Hi Mseth,

Ferritin for the initial test is reaching almost 10,000 but the final one is 4864 and they retest again, the level was 4318. All these results are from the same blood taken on the same day.

Yea, cant really tell as it is too early.

Thanks for the info on Exjade.

Thanks Birgitta, wish you a Happy & Healthy 2014 too!!

This may not apply to your mother as I also have CLL intermediate stage. One possibility is for the bone marrow to be jammed with immature cells so that the WBC cells are unable to be produced.

Update
 

Hi all,

Just to update about my mom status after she was on Danazol for about 5 months now. Started Danazol from Nov 2013 and seeing improvement on the BT needed after 3 months consuming danazol. BT was extended to 2 packs/6 weeks now as compared to 4 weeks before. Will keep monitoring and updating here.

Hi Teo,

Great update, hope she will continue with a good response like this.

My mother has been prescribed a Danazol+Prednisone combination by a specialist, but our treating doctor is not encouraging her to try either. I hope to convince him.

What is the Danazol dose? Is she experiencing any side effects, as its a male hormone.

Do keep posting on the progress.

Danazol
 

Hi Theo,
Very positve that your mother is responding to Danazol :)!
Kind regards
Birgitta-A

Danazol
 

Hi Mseth,

Sorry for late reply.

Dosage = (2*500mg) * 3 times a day.

There is no side effects so far besides the weight gained which she concerns the most :)).

Did your mom try Danazol before ? If not, maybe she can try it. You can ask the treating doctor why he doesnt allow your mom to try Danazol. Good to find out first before insisting. Just a thought!

Cheers
teo

Danazol
 

Hi Birgitta-A,

I hope it will continue improving but some of the Blood test results make me a bit worry.

I do noticed the WBC is a bit out of the range this time. It was at 3.8 (Normal Range : 4-11) with HGB 9.9. Also the RDW (red cell distribution width) is very much out of range too, 21.2 (Normal Range : 11.5 - 14.5). Suspected these might be the side effects from having the Danazol as these 2 values are out of range when the HGB gets improved. If you have any opinions or suggestions. Please do share with me. Thanks.

cheers
teo

Danazol
 

Hi Teo,
Your mother's WBC is still good but you have to keep an eye so it isn't really decreasing. My WBC often decreases when I take new drugs so I have to take low doses or take Neupogen injections to avoid neutropenia. Danazol can probably decrease WBC.

As far as I understand it is very common in MDS patients to have a high RDW – we have red blood cells of different size. It can increase after txs.

I have never had that test – it is new and used to examine different types of anemia. My dx has been MDS during many years.

I don't think you have to worry about these test results.
Kind regards
Birgitta-A

Danazol
 

Hi Teo,

Doctor does not recommend Danazol as it may cause hepatic(liver) toxicity. And more importantly it is not part of the MDS treatment protocol. My mother has a confirmed MDS dx.

RDW(red cell distribution width) is always included in a CBC test at the lab we use, after transfusion the RDW is closer to normal range and before transfusion it is always high. It seems to be reverse for your mother. I dont think this is of much significance. Hb of 9.9 is very good, is this just after transfusion?

TLC can also drop due to chelation or any drug as I understand. TLC of 3.8 is not a worry. After start of chelation my mothers TLC also dropped, but still low normal till last report.

Thanks for the advice Birgitta-A. Appreciate that.

Actually my mom RDW has been steady within the range for around 2 years and it became so much out of range after having Danazol for few months. That's why i am wondering/worried.

May i know what new test is that to examine different types of anemia ?

Hi Mseth,

Personal i think all medications have the side effects depending to individual body condition. If other treatments doesnt help in your mom HGB, it might be worth trying Danazol or Danazol + Prednisone, plus monitoring the liver status if that's what the treating doctor concerned about.

As my mom RDW is always within/a little bit out of range before or after the BT, so this few months RDW is a big jump for her after consuming Danazol. Will monitor further.

HGB 9.9 is after having 1 pack of blood 8 days ago. The HGB before the BT is 8.7.

cheers
teo

RWD
 

Hi Teo,
When my lab (Karolinska Institute) look at my blood they control: Hb, Erc-MCH, Erc-MCV, Erc-MCHC, LPK, TPK, EPK and EVF.

As far as I know they have never controlled RWD. I have googled the test and it is really not new though not so much used in Sweden except in newly detected patients with anemia.
Kind regards
Birgitta-A

Thanks for the info Birgitta-A.

Might be Danazol side effects
 

My mother WBC seems continue to go downward after consuming danazol (2*200mg/day) for the past 6 months. Current level at 3.36. The level drop from 3.8 to 3.36 in 19 days. Initial level before consuming Danazol was at more than 5

The ANC level was at 1938 ([10^3/mm^3]) 2 months ago when the WBC at 3.86. The normal range must be > 1500 [10^3/mm^3]

The formula i am using to calculate for ANC is

ANC = WBC count (x10³/mm³) * Neutrophils (%).

Found this in internet. Hope the formula is correct :))

Just wondering if the ANC level goes below the 1500, is it a MUST to get it back to 1500 again or can this be done later as my mother will go for a trip in the middle of this month. Any help/info is much appreciated.

Or should my mother stopped taking the Danazol for the time being till after she is back from the trip.

Hi Teo,

Danazol is not known to reduce WBC but then any drug may cause different reaction in different people. Chelation drugs can reduce WBC, though your mother did not have decreasing count when she started that it can happen later as well. Maybe you can ask the doctor and reduce/stop chelation drug for a while to see if it helps. She has just started benefitting from Danazol, you can try stopping that next.
Her ANC is still above the threshold level, but you will have to keep a watch and see how it can stay within normal levels with a reduction in one of the drugs, if it is one of the drugs responsible for it.

Has your mothers Danazol dose ben reduced? You mentioned a higher dose in your earlier post. My mother has also started taking Danazol 200 mg* 3 times/day.

All the best for the trip!! Good to keep life as normal as possible.

Thanks for the suggestion Mseth.

At the moment, i will get the results of the Neutrophils % from the hospital (No hema in this hospital) in order to get the ANC values for my mother when her WBC was at 3.36. Then i will ask the specialist in another hospital what is the next action for my mom.

I told my mom to just taking 1 Danazol/day instead of 2 from today. Will consult the specialist within this week.

How is your mom after consuming Danazol ? Hope there is no side effects.