confused re treatments

[aussie danielle]

Hi i have low grade myelodysplasia and am red cell deficient.with times of a high white cell count.
my age is 72 this november .i have been led to believe here in australia, that other than transfusions, nothing else can be done for me.is this right??

It may be my fault ,that i have this opinion, but so many pages and pages of information on the net all i feel you need a degree to understand properly.i just get bogged down with it all .My GP here in the town i live in !!well!! he knows less that i do....
My specialist is an oncologist, hematologist.reputed to be the smartest in the state.i live 5 houirs from him, so only get to see him twice a yearand that is so rushed as he is such a busy man.i feel i need to pin him down and ask more question. i was diagnosed 15 months ago.

is there any one that can share their thoughts on something to try to get the red cell count elevated?? i have read that exercise is very good for the bone marrow .i need to hear the folk who actually have this disease...i look forward to hearing from any one ...thanks so much aussie danielle

[Birgitta-A]

Hi Danielle,
Initially - before blood transfusions - your doctor should have taken a test called EPO. EPO is made in the kidneys and this test shows if your kidneys try to increase hemoglobin by making more EPO that stimulates the bone marrow.

If your own EPO is high - mine was more than 800 - then EPO in injections called Procrit or Aranesp won't help you. If your own EPO was less than 500 then you should try Procrit, Aranesp or a similar drug that can increase your hemoglobin.

You don't have to wait until you meet your hematologist again - just ask him in a mail or letter about your EPO. If it is less than 500 you should tell your GP that you want to try Procrit or a similar drug. I can post reports about EPO treatment if you are interested.

Exercise is always good - it stimulate the whole body. Then I take B6, B12, folic acid and vitamines with minerals except iron for the blood.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, transfusion dependent from dx. Supportive treatment with transfusions, Neupogen for low white blood cells, Desferal and Exjade for iron overload until 2010 when I started to take Thalidomide + Prednisone with positive result.

[Chirley]

Danielle, I've sent you a private email.

The hematologist you're talking about sounds like James Morton. Busy, busy, busy! But exceptionally good.


Please ring the Leukaemia Foundation so you can register for our telephone forum that's happening this Tuesday night. They really are a good place to ask a lot of questions, even ones that you wouldn't ask a doctor, just input from fellow sufferers.

Regards

Chirley

[aussie danielle]

Hi there i will go in and read your email yes it is James Morton busy busy busy you are so right...thanks for the reply i will go in now and have a read and i will ring the foundation.thanks so much for the reply its greatly appreciated...i feel like im floundering around in the dark from one transfusion to another..mny last vist i to james he said you wont make 7 weeks for a transfusion you can forget that, that is in the past...and up t nowi have made the 7 weeks going in to the 8th!!Drs...!!

[aussie danielle]

chirley didyou send it to my private email address?/or the private messages here?/im so new here still finding my way about.danielle

[Chirley]

Hi Danielle, I sent you a PM.

Mention busy doctor and automatically think James . I've seen him do a consult from the door while running past. In his defense, he is excellent and is in charge of QLDs only BM transplant unit and he does enormous amounts for charity. He also gives talks on BM transplant to interested people for the LF, for free of course. I don't think you can get much better. ( except my Dr.....Ashish Misra). Ashish isn't as busy and can take the time to stop and have a chat. He also likes to treat people as a whole and not just as their disease. He works with James at the RBH as well.

Regards

Chirley

[Julianna]

Hi Chirley! Dr Misra was my Dr in Brisbane. And I guess still is if I go back to Brissy for treatment. Funny thing is that I guess all the Hemo's in Australia probably know each other. Anyway...

Hi again Danielle. Nice to hear some more of your story. I mostly come here if I've gone through some health drama at the time. But I try to forget about it, as much as one can! Which is hard sometimes.

Hope you can get in touch with the Leukaemia Foundation as Chirley suggested. They have been a great support to me down here in Vic. Take care and all the best. xo

[Chirley]

Hi Julie,

I think Dr Misra is awesome. When I was in hospital recently I was in a huge amount of pain. My neurologist wasn't answering his phone or pages so they rang Dr Misra.


It was late at night but he ordered two different types of pain relief and then CAME IN to the hospital to make sure I was okay.

There aren't many people in this world, let alone doctors, that I can truly say I respect, admire, trust and like. He is a rare one.

Regards

Chirley

[SLB]

Hi!! Its great to see some aussies on here. I am a 36 yo female from parkinson, in brisbane I was diagnosed with mds raeb 13% blasts only 2 months ago. I am currently under the care of Dr Bahn from the Qld haemotolgy & oncology group. Have u heard of them? I am currently in hospital on iv antibotics for an ear infection that came on within less than 24 hrs. I am due to start on vidaza injections on mon next wk if this infection hasnt messed with that. I am being referred to royal too for a SCT. Interested to hear about doctors in area but not if there is no time at all to ask questions etc... It is hard enough to get your head around things as it is. LF has been great to me so far so defintiely also say contact them. They recommended the telephone forum but dont think i will be out of hospital this month. Sorry danielle i dont know much about red defiecenes my mds is affecting mainly neutrofils (hence ear inf) & low platelets. Think my hg is about 10.

[aussie danielle]

hi there Lbl thanks for the reply, yes it s so good to chat with someone else who has this crazy problem...

i dont now a lot about your type either it seems there are various types.Im hopeing i can get on the telephone forum evenif i just listen .

Since joining Marrow forums in the past couple of days, i have learnt bits and peices, that areall helpfull.The very best thing though,is to actually chat to someone who knows what im talking about and to me taht is great.

i hope you are feeling better soon and your ear is all good again,may be next phone forum we can say hi....take care chat again sometime hugs danielle

[Joyce W]

I am confused by treatment therapies. My mom (age 96) has MDS. Arenesp stopped being effective which she was getting every 6 weeks. Now Vidasia has devastating reactions for her. She now has MAI bacteria resulting in pneumonia and getting three strong antibiotics. Plan is to resume blood transfusions and receive platelets plus neulasta shots for remainder of the month and then begin Vidasia treatment again. Does anyone have any documentation on long-term blood transfusions with Arenesp and Revalimid as opposed to beginning Vidasia again which will bring her counts down and back into pneumonia. Desparate for some advice since she is out of state.

[Chirley]

Hi SLB,

Don't worry about joining the phone forum if you're still in hospital. There are a few of us who have joined in while still in hospital.

I was going to do it last time but I had a bad night and needed morphine needles. Thought I'd probably fall asleep mid sentence, not a good look

Is the QLD haem and onc group based at Greenslopes? I go to HOCA. I used to go to Chermside (live at Loganholme ugghh) but starting today I'm going to Mater South Brisbane.

If you get a chance it'd be great to have a lot of participants tonight, especially with Dr Tony Mills as guest speaker. I got my second opinion from him. He's really easy to speak to. He works PAH and Greenslopes.

JOYCE....sorry, I don't have any advice for you, there are far more medically savvy people on this forum than me. I hope someone can give you the answers you're looking for.

Regards

Chirley

[SLB]

Sorry for the delay in response... thanks for reminding about the phone forum Chirley and I did go on and asked a few questions.. found it very worthwhile. How were the doctors at the Mater?

I believe my doctor (Dr Ray Bahn) works out of greenslopes, brisbane private and also at Mater. But he office that i see him at is Brisbane Private (the old Holy Spirit hospital in Spring Hill) & have been admitted there twce but did my 2nd BMB at greenslopes.

Sorry Joyce I too am clueless I have only started this journey 2 months ago.. or should i say this rollercoaster ride! however i hope things start looking up for your mum soon.

Sharnie

[Birgitta-A]

Hi Joyce,
Both Vidaza and Revlimid often decrease the counts initially. That can lead to severe infections. Revlimid can decrease platelets and since your mother already needs platelet transfusions I don't think Revlimid is the best drug for her.
http://www.ncbi.nlm.nih.gov/pubmed/22211483

Why not continue with supportive therapy with blood and platelet transfusions + Neulasta for the low WBCs.
Kind regards
Birgitta-A