desperate for info!

[hectorzaza]

Hi all,
Firstly I apologise in advance that this may seem rather long winded but I'm desperate to try to understand my father in law's RAEB,diagnosis was earlier this year.
Unfortunately,my mum+ dad in law[both in their 70's]are always reluctant to ask many questions of doctors,believing that they are 'bothering them' so when giving my hubby and myself info it's very hard to decipher.
We know he has RAEB but don't know if it's 1 or 2.He's been on the synthetic hormone injection,weekly for about 4 mnths and has had 1 transfusion[which made no difference]and has just had the injections stopped as they 'are not working' and is having his 2nd transfusion tomorrow,but then does not see anyone until Jan 18th.....????!!!!!!!
I understand what RAEB means,the blasts etc,and have done a fair bit of research on here,and understand about the % of blasts being important
but the only concrete numbers I can get from mum/dad are as follows
'Normal' blood 16-18
dad's blood 2 months ago up from 7 to 9[not after the transfusion]
blood now at 4
What I just cannot find out is what these numbers refer to,they don't seem to match any type of cell count or % of blasts.
Therefore I cannot hazard a guess as to whether he's into RAEB 2 yet [4 instead of 16-18 sounds bad to me] or whether he should possibly be having more transfusions.They have said that if this transfusion makes no difference it will be chemo.
Hubby and I are really desperate to know how far along the line dad may be
Can anyone shed any light at all on what those blood numbers may be or indicate??
Being partly in the dark like this eats you up and you don't know how prepared you need to be and when.
Any info will be REALLY appreciated and all comments will be answered,
Thank you all in advance

[Birgitta-A]

Hi Hectorzaza,
You are right when you think your father ought to have more transfusions. The range for hemoglobin for men is 13.5 - 17.5. http://www.mayoclinic.com/health/com...ECTION=results. Different labs can have a little different range.

Your father has probably been treated with an EPO-drug like Aranesp during 4 months without effect. Some patients that don't respond to an EPO-drug alone do respond if they get the combination EPO-drug + Neupogen or a similar drug that stimulates the white blood cells.

A hemoglobin of 4 is far too low - your father can get severe heart symptoms. You have to ask your father for permission to contact his doctor and discuss diagnosis, test results and treatment.

The most important tests are hemoglobin, white blood cells and platelets. Ask for copies of all his test results and save them.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, tx dependent since dx due to severe bone marrow fibrosis. Positive results with Thalidomide + Prednisone since 2010

[hectorzaza]

Hi Birgitta-A.
Thank you so much for your reply,it.s terrible when you just can't find any answers.
I wish I could think that he'd give permission,but he wouldn't even take mum in law in with him but for the fact he forgets what they've said to him.
He also has a bad lung disease,not sure of spelling.......bronchiecstasis.. it's same family as cystic fibrosis,he's also had a triple heart nypass years ago and only 1 side of his heart is up to the job.
We go with them to the cancer unit but tjey won't let us in to the Dr with them....it's all sooooo worrying,i'm nervous every time the phone rings!!

Anyway,thank you again,I have not nosed into any other posts you may have done so I hope you are well
Grateful regards x

[Birgitta-A]

Hi Hectorzaza,
OK, when you don't get any info it is difficult to know what is going on. I now understand that he isn't your father but your father in law.

I suppose he won't let his wife ask for copies of the test results?

The lung disease bronchiectasis can be serious as well as a heart operation.

I feel fine thank you - as a matter of fact I have not had much symptoms since dx 2006 when I got breathless in long stairs and steep hills. With Thalidomide + Prednisone my WBC and platelets are holding - my hemoglobin is slowly deceasing but there is no need for next drug (Revlimid?) yet.
Kind regards
Birgitta-A

[hectorzaza]

Hi again,
Afraid he won't let anyone ask Dr's further questions,not his wife or son or even me,perhaps he just prefers not to know.I just don't think he realises the worry but we have to respect his wishes ,I know.I just wish I knew if I should be pushing for more transfusions.

Good to hear you are reasonably well at mo.......I hope that continues

Best wishes x