New member- mother-in-law recently diagnosed with MDS RAEB-2

[chris]

Dear Darren

Arrrgghh!! Just posted a great long reply to you all and it hasn't appeared. Don't know if this is because Jayne's posted at same time and system cannot handle?!

Anyway, if I can remember what I wrote. Thanks so much for doing this -especially with a 2 -year-old party going down!! Fond memories of the Terrible Twos - not!!! Oldest is now 32 but still causing me stress!!! Sophie has now posted the Independent supplement on the home page of this site and there is an article about Gwen who is now on Azacitidine. Might be useful to share with family and your mother-in-law and hope that she is bearing up with the side-effects.

Sounds like some would like to know a range of normal values. We do need to bear in mind that medical staff will have our medical histories and other information to make an educated interpretation of results but the ranges are in public domain so with those provisos, I think it's a good idea. Even within the Uk some hospitals/ labs use different measuring systems so people who have a haemoglobin of 10 could be a bit worried if they read somebody else has a value of 107!! As Sarah says, please don't feel obliged to respond quickly as you have enough on your plate but you can see how appreciative people are. It does highlight a gap that maybe the clinical nurse specialists could provide? Having said all this, MDS Patient Support and especially Sophie are an absolute mine of information so we just need to make sure that newly diagnosed people get to find this site.

Sarah - glad that burning the midnight oil with the webinars is helpful. If you register you can watch a live one and type in your own questions which I have found very helpful. Free consultations with experts!!

Off to France in a few days and hoping the gale force winds die down as don't relish the ferry experience!!

Take care, all

Chris

[Thedbs]

Dear all,

I'm so glad you have found this information useful. I will post further information as requested but this may have to wait until the weekend as I'm off to sunny Glasgow for a blood transfusion conference over the next 3 days.

Thanks for the Independent article notice. I will read and pass on the info.

Chris, I hope the wind dies down too as don't fancy flying in this as much as you don't fancy a sea crossing. Enjoy your trip to France.

Take care all

Regards

Darren

P.S. Mother-in-law doing ok. Had second platelet transfusion today and having first two units of blood tomorrow so that should perk her up a bit. Will post results and treatment plan later for info.

[janetstanford]

Hi Darren
thank you for that i am sure as you are being very kind and are busy we certainly can wait
i do hope the mother-in -law is feeling better tomorrow after her transfusion just had mine today just a little tired although after a sleep i will be fine its the sitting that makes you tired....

that blood transfusion conference sounds interesting if there is any thing you think may interest us please post ....

the weather over the next few days is rain and wind i am flying on Thursday and Chris has the ferry to combat hope a safe journey for all over the next few days

again thank you Janet

[chris]

Hi Darren and Janet

Hope your flights are OK. Supposed to be lighter winds so hope we all have a comfortable journey!!!

I think the initial action of the drug is to lower existing counts - hence the need for platelet and blood transfusions until the counts start to pick up again. How often is the treatment given to your mother-in-law? I heard an interesting thing on a webinar the other day. Apparently all the research on Azacitidine was done using a 7-day cycle so this is the recommended protocol. However, as the haematologist pointed out, most clinics do not open on Saturdays or Sundays so usually they either add on the Monday and Tuesday of the following week or give 5-day treatment cycles?

Looking forward to your further posts but only when you have the time.

Chris

[Sarah Reakes]

Hi Darren et al,

Just a quick posting. Our recent conversations regarding information on the normal blood count ranges/levels for men and women got me thinking that this really is something that ought to be on the MDS Patient Support website as reference material for us all to be able to refer to as a standard.

Coincidentally, I was speaking to Sophie today regarding forming a Regional Group in this area, and mentioned this subject to her and she said that she thinks there is a one page document giving this information that one of the Specialist Nurses at Kings had produced and provides to her patients. Sophie also thinks that she has some information on this on file, so she said she will look into it and see what she can do.

I just thought I'd mention this as this will save you the trouble of duplicating this task if Sophie already has it to hand, and more importantly, as Administrator she can ensure that Patients/Members will be able to find it on the website as standard reference material. Suggest, therefore, you hang fire until we know what Sophie manages to come up with.

Hope all goes well.

Sarah

[Thedbs]

Hi all,

I have not disappeared and not forgotten about your requests for further info. Only got back from conference in Glasgow late Saturday and been tied up with work. I hope to be able to put finger to keyboard at the weekend.
I hope all are well

Regards

Darren