Mum, Myelodisplasia > leukemia?

[grungema3]

Hi all , you americans make me giggle! You know all the names of all the tests! In England , if you go into hospital you're lucky if they tell you your doctor's name! Also, we must be the only country where no-one is told their blood group - and they get upset if you ask!
Anyway, Mum 90, multiple health problems, heart, lungs etc. Has regular transfusions. Was due one today. Has been getting weaker each day. 10 days ago, hb 11.5. Last night she was in a terrible state. Could hardly breathe and was hanging on to me in excrutiating pain all over her body. Stayed with her all night, eventually slept.
Today, hb was 8.2. She usually goes down about .5 a week.
Stupid English hospital said they had no bed for her to stay to have her second bag of blood (day centre was closing) so we have to go back on Thursday.
Does this sound like  the MDS has crossed to a leukemic state or does the MDS produce these symtoms when the hb is low ? The doctors won't tell me anything - I told you, they're all sworn to secrecy like the Masons!  

[Londres70]

Your mother (mum) has dementia too?  Geez!  

Remind me never go to England for care. (joke)

Well, in any case, she needs a bone marrow aspirate to confirm AML.  After reading your posts, I think she in converting to this Leukemia.  Unfortunately, given her age and other conditions, it will not be a good prognosis

[grungema3]

Hi, there

Thank you so much for taking the trouble to reply.
Yes, that's what i thought about the way to treat anyone. I wasn't well enough to take Mum (M.E./ C.F.S) so the carer took her.
They phoned me to say they didn't have time to give another bag. Can they keep her? No, not hospital policy unless under hb5!
Yes, the hb is getting more erratic - sometimes it goes down around .5 a week then, like this time, it goes down from 11 to 8 in ten days.
You must be joking about me knowing the result of tests!  Or, indeed what the tests are or what they're for.  I told you, doctors in England must have to have Secret Service training before they qualify!
I don't like to think this, but I do believe that there is a conversion taking place.
They've tested her everywhere and there's no bleeding.
I was concerned about the excrutiating pain because this has never happened before.
Mum's legs ache when she is due for a transfusion but I'd never seen her like this - Pain all over her body, poor thing.
It did go after the blood on Monday but this morning I was scared to try and wake her in case she didn't. She looked horribly white, no colour in her lips, really scary. I went near the bed and she opened one eye and said "Is it breakfast time? I'm starving!"
Then she looked at me and said"What's wrong with you? You're as white as a ghost!"
She does make me laugh. I know I should be prepared but I'll be devastated when she goes. I know she's 90 but her heart's so bad, 2 leaky valves, and pulmonary hypertension. I really hoped that nothing else would crop up but if it has I can't change it.
Do you know, people just see a tiny ,pretty little old lady but my mum that was used to wear mad high heels (right into her seventies!), always had her hair done and her makeup just right. Even now she moans at the carer for trying to dress her in the wrong matching colours and tells her: "You're so old fashioned, supposed a modern young lady but you've got no idea!"
Anyway, it's 2.00a.m in this part of the world so I'd better go to bed.
Once again, thanks so much for botheringx  

[grungema3]

Hi thanks for your reply.
Re. test results. You're having a laugh! I told you it's all MI5 and CIA here. If I started quoting all that to the doctors they'd get really upset! Nobody likes a smart *** -especially English doctors!
Seriously, they have tested  everywhere for bleeding and there's none anywhere - stomach, poo, wee, organs. She has no significant bruising other than where they take blood, give transfusions.
I asked the doctor why she hasn't had a bone marrow test and he said that when she was in hospital he said he was going to do it and she refused. Even a 90-year-old lady with dementia  has to be taken at her word otherwise the doctor ends up in prison.
I don't have power of attorney so they couldn't phone me for permission.
Thing is, no-one told me or requested that I attend while mum was being examined as I could have persuaded her that it was o.k. I'm sure it's not at all o.k. and it sounds  like it hurts loads, but if that is what's needed to secure a definite diagnosis I might ask him if he can turn up while she's having her trans.
On the other hand, with a weak heart and two leaky valves plus pulmonary hypertension, maybe he really is a bit worried about causing too much shock.
Don't know, told you, they don't tell you anything. Good job I've got a watch!
She had half the transfusion on Monday. I thought she'd look better today. When I went into her room I had such a fright. She honestly looked like that was it. Horrible  white, pale lips, I was scared to touch her in case she didn't wake up.
However, I must have disturbed her because she saw me, opened one eye and said"is it breakfast time, I'm starving!"
Appetite has improved since monday, she's sleeping now so I only have one more day  to go.
I do think that they are duty bound to tell next of kin of any changes but I think the only way they can make a correct diagnosis is by bone marrow so it would only be an  educated guess.
At the end of the day, I don't suppose it makes any difference what it's called. The pain has stopped since the trans. but I will  ask them to come and do full bloods  every week instead of every 2 as is happening at present.
I just asked because it was a new symptom- poor mum.
Anyway, thanks once again for your time and reply.
Have a good day/ evening / nightx

[Londres70]

How long has she had the MDS?  Has she had a bone marrow transplant? Any chemo treatments?  

If it is getting more and more difficult to keep her Hgb counts up and they are dipping shortly after blood transfusions, I would be suspicious that she is converting to AML if no other cause is found.  What have her platelets, wbc and absolute neutrophil counts been like?  The anemia secondary to the MDS can produce the symptoms she is having.  

She also could have a bleed somewhere causing the Hgb to dip quickly.  

If that is how they treat a 90 year old woman in England with multiple medical problems and a Hgb of 8.2, that is a shame; she should have been hospitalized to sort her situation out for sure.  Waiting another day to get her second unit of blood who knows what her Hgb will be by Thursday.

[Ken_PA]

hi again. My guess would be not leukemia but bleeding. Look for red or black stools. Also look for bleeding inside the mouth, where it might show up more readily. Also for bruising or red/purple splotches on the skin.

Here's the reason: the MDS keeps normal blood cells from being produced. So all the cells like Red Blood Cells (RBCs) and platelets get fewer and fewer. Which is called anemia. Since those RBCs are what carry oxygen throughout the body, she can't breathe well. However, that doesn't explain  the rapid drop in her hb.

And the pain? You say it's not only in her chest. So maybe/probably that's not from the anemia.

The platelets are a big part of what stops up any bleeding. Low platelets = more bleeding, even internally where it can't be seen. Did you tell any doc there about the pain? Maybe it's from internal bleeding, which can be very serious. But again, you say it's all over - - so I don't have any good guess as to why that is. Please ring somebody up right away and tell them about the severe pain.

What were her platelet counts lately, on the same test (CBC with platelets) on which her hemoglobin was tested?

Another type of blood cell that gets fewer and fewer are the immune cells. Is there any fever?

Good luck to your mom. At the very least they should treat the pain immediately.  Maybe somebody else here has better info for you.