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Chirley
Tue Oct 23, 2007, 10:31 PM
Hi, I'm new to the site, I have not been diagnosed with MDS however the numerous Haematologists I have seen all say my bone marrow biopsy (4) results all suggest MDS without finding any dysplasia. Chromosome analysis normal. I have a chronic anaemia which requires 5 weekly blood transfusions, I also have a consistently low white cell count with both low neutrophils and low lymphocytes. Platlet count has always been normal. This first started 4 years ago when I got severe atypical pnuemonia and the doctors noticed that my white cell count was low and wouldn't respond to the infection.

I have a couple of questions for you. Did anyone else have trouble getting a diagnosis ? My Haematologist wants to do another bone marrow biopsy, this time after giving me 8 to 10 units of blood to try and prod my bone marrow into producing more cells so that he has a better chance of finding dysplastic cells . Has anyone else heard of this before ? My disease is complicated by having iron deficiency of unknown origin and extreme allergic reactions to any form of iron (oral, IV, IM). I prefer to think that my anaemia is simple iron deficiency but the blood test results and bone marrow results don't support this.

Thanks just for being there. Chirley

Zoe's Life
Tue Oct 23, 2007, 11:10 PM
Chirley,

Welcome. I don't really have any answers for you, but someone likely will. You have 5 transfusions a week? Wow! Is there some hemolysis going on?

I am curious though, if there is no dysplasia, and no chromosome abnormalities, what are they basing the probable MDS diagnosis on?

I have not heard of transfusions increasing bone marrow production, but maybe someone else has.

Why are they convinced it is not related to the lack of iron?

Sorry, all I can think of is more questions for you. Sometimes though, asking the right question can be what you need.

Zoe

Chirley
Wed Oct 24, 2007, 12:11 AM
What I meant to say was that I have a transfusion (4 units) every five weeks. I don't know why the doctors still think it's MDS except that I have had bone marrow biopsies following Fe infusions (before I started getting allergic reactions) and the bone marrow still doesn't increase it's production of red cells. The red cells that I produce don't mature properly and therefore won't carry haemaglobin. There was also something about the (?) MCV, being high instead of low which would be expected in iron deficiency.

The haematologist wants to give me another iron infusion just to see what happens but because of the reaction I get he says he will admit me straight into the Intensive Care Unit for it. However, my skin burns and blisters every time despite steroid and anti histamine premeds and prednisone tablets afterward. This always happens within an hour or two of starting the infusion and I'm not willing to go through the weeks of discomfort and pain again. Last time I went into mild kidney failure as well.

As you would understand I'd much prefer to have Fe deficiency anaemia to MDS. After reading some of the posts, I have to admire the courage that is displayed there. Chirley

Zoe's Life
Wed Oct 24, 2007, 09:18 AM
Oh, OK, a transfusion every 5 weeks makes more sense.

MCV is mean cell volume and has to do with the size of the red blood cells. Yes, with iron deficiency MCV tends to be low, and with MDS it often runs high.

I know that before I was diagnosed and was searching on-line I found that there are some iron utilization diseases. I believe I found the info on the Merk Manual web site.

I hope someone has more ideas for you. You might also try posting in "Bone Marrow Failure," or "General Health Issues" to see if someone who doesn't read "MDS" might have some ideas for you.

Keep us posted.

Zoe

Birgitta-A
Wed Oct 24, 2007, 03:17 PM
Hi Chirley,
Here is a link about definitions in the diagnosis of MDS:
http://www.hematologics.com/pdf/ref36.pdf

Try first page 35 - if it is too complicated ask your hematologist - and then page 6 - perhaps you have Idiopathic Cytopenia of Uncertain Significance (ICUS).

I think you fulfil the prerequisite criteria - A - but none of the MDS-related criteria - B - but you didnīt mention anything about blast cells in bone marrow. The co-criteria - C - are so complicated that you have to ask your hematologist if he did any of these examinations:confused:.
Kind regards:)
Birgitta
Diagnosed MDS May 2006 - June 2006. Then rediagnoses to myelofibrosis til September 2007. Since then I have MDS intermediate-1.

Chirley
Wed Oct 24, 2007, 08:05 PM
Thank you for replying. I have read the link you sent me and it has made me feel relieved because now I know there is an alternative to the MDS diagnosis. Not one of the doctors I have seen has ever told me there were other causes for cytopenia. Chirley

Birgitta-A
Thu Oct 25, 2007, 05:46 AM
Hi Chirley,
I have never read anything about giving 8 to 10 units of blood "to try and prod the bone marrow into producing more cells so you have a better chance of finding dysplastic cells" and donīt think it is a common method:mad:.

The other idea "to give another iron infusion just to see what happens" and admit you to the Intensive Care Unit because your skin burns and blisters seems just as uncommon:mad:.

Then I think it is better to give 2 units of blood more frequent than to give 4 units every 5th week:mad:.

If I was you I should try to find a new hematologist even if you have been to numerous. I think the hematologists at MD Anderson Cancer Center are the best in the world. In any case you have to go to a university clinic where they have better possibilities to perform the complicated tests you need to get the correct diagnosis;)
Kind regards
Birgitta

Zoe's Life
Thu Oct 25, 2007, 08:52 AM
Chirley,

This is likely too obvious, and has likely been done, however, the thought came to me, so I will ask.

Have they checked your B12 levels, MMA (this will be elevated when their is a B12 deficiency), and folate levels? Deficiencies of B12 and/or folate will cause macrocytic anemia. Wouldn't affect your white cells though.

Just a random thought that came to me, FWIW,
Zoe

Wayne O'Shana
Fri Oct 26, 2007, 02:07 AM
Hi Chirlie:

You need a new hematologist - - - the one you have now sounds like a real nut case. (UK - Aus?)

Zoe makes a good point, and checking for intrinsic factor is something else to consider. If that is missing you could avoid another injection by using an under the tongue B-12 + folic acid tablet. Can you take a multi vitamin mineral tablet with 15 mg iron without having such serious problems? One other thought, eating lots and lots of liver was supposed to help some people with pernicious anemia in the dark ages before B-12 was discovered.

Visit www.irondisorders.org and click on tests. A full iron panel might also help with your dx. If you are not already doing so, be sure to get a copy of every lab report and give us more info on your counts.

Best wishes,

Wayne

Chirley
Fri Oct 26, 2007, 04:14 AM
I live in Brisbane Australia and have been attending the haematology clinic at a major teaching hospital, hence the numerous haematologists. I now see a private physician and have my blood transfusions in a private hospital. The last haematologist I saw was invited to consult by my physician who wanted some extra input. It was this haematologist who suggested the hyperinfusion and the repeat iron infusion. Since then I have had a nuclear medicine scan which has shown a "hot spot" in my R kidney, so there may be another reason for my blood dyscrasias. Hopefully, it will turn out to be something treatable. Keeping my fingers crossed.
By the way, I am homozygous for MTHFR genotype which makes me at risk for vascular disease and arterial thrombosis (never had a problem). I take 5 mgs folic acid every day to prevent any problems and blood tests show that I have lots of B12 and folate on board.
Oddly enough I'm almost looking forward to my next visit, just to see if my kidney could be the cause of the problem.

Birgitta-A
Fri Oct 26, 2007, 11:18 AM
Hi Chirley,
Yes, we hope that your blood dyscrasies depend on some treatable disease in your R kidney:)!

If not, you could perhaps try to see a hematologist at Department of Haematology and Medical Oncology Peter MacCallum Cancer Centre in Melbourne with this adress: http://www.petermac.org/dept/haema/

The hematologists at this clinic participate in clinical trials for MDS patients and have to be able so diagnose MDS. The name of the doctor who is contact person for a trial for MDS patients is Dr Melita Kenealy, Department of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Locked Bag 1 A’Beckett Street, Melbourne VIC 8006, tel: +61-3-9656 Ext. 1111, melita.kenealy@petermac.org.

I donīt mean that you should paticipate in a trial but you have to get in contact with a MDS specialist:rolleyes:.
Kind regards
Birgitta

Helen Robinson
Fri Oct 26, 2007, 11:18 PM
Hi Chirlie

I sympathise with the uncertainty of your diagnosis but it sounds as if you are being well looked after. We can recommend Peter Mac but Mellita is on maternity leave. John Seymour is her boss and is very approachable. See wesite for details.

When you have more info your dr could confer with him or you could do it yourself. We travel to Melbourne via Sydney to gain access to Revlimid for my husband. He has MDS 5q- and it is finally working. The travel is cheaper than buying the drug from the US.

Because of our smaller population there are fewer cases of these rare conditions. Have you seen our local Talkbloodcancer.com forum? It is moderated by the Leukaemia Fdn and covers many disorders and there are members from Brisbane.

Best wishes

Helen

Neil Cuadra
Sat Oct 27, 2007, 12:07 PM
Because of our smaller population there are fewer cases of these rare conditions. Have you seen our local Talkbloodcancer.com forum? It is moderated by the Leukaemia Fdn and covers many disorders and there are members from Brisbane.Thanks for pointing out the site. We've added Talk Blood Cancer (http://talkbloodcancer.com/) to our Resources page.

Chirley
Fri Nov 9, 2007, 01:19 AM
Hi, I just received my blood test results from 2 days ago. My Hb is 75 and my WCC is 2.0. This means that i'll need another transfusion next week. By that time my Hb will have fallen to 70, it seems to average a fall of 5 - 10 a week. I'm kind of used to this after 4 years but I get really tired and I still need to work. What I'm finding hard to deal with is the joint pain that I get. At the moment (last 6 weeks) I have had L sided hip and shoulder pain which makes working just that much more difficult. Unfortunately I have a physically active kind of job. PLEASE does anyone else get this kind of joint pain ? If so , what is it ? How do you ease it without taking pain killers ? My doctor doesn't seem interested. When you have a more serious condition they don't seem to want to know about minor (!!) inconveniences. When I have my transfusion next week I should find out what the hot spot in my kidney is all about. I hope it doesn't mean more tests. Looking forward to some feedback. Thanks. Chirley

Birgitta-A
Fri Nov 9, 2007, 07:57 AM
Hi Chirley,
When your white blood cell count is only 2,0 :mad: you have to be very careful so that you donīt get any infections- if I was you I shouldnīt work because you probably meet many persons that can be infected.

I was hospitalized with very low white blood cell count (1.5) after four infections July-August and since then I have to get Neupogen injections - now 2/week with very good result (white blood cell count now 18,4).

Bone pain is one of the symptoms of MDS but can of cause develop in many diseases. If you look at joint paint in the archive of this site you will find many posts but I have not found any explanation at internet.

Take care!
Kind regards
Birgitta

Kitty
Mon Nov 12, 2007, 03:06 PM
I just wanted to add my Dr. recommended I take 1 Claritin a day (now sells over-the-counter) for bone pain caused by neupogen and it works really well.

Zoe's Life
Mon Nov 12, 2007, 10:18 PM
Kitty,

Claritin for bone pain? How interesting. I wonder why it works.

The things you learn here :rolleyes:

Zoe

Chirley
Fri Nov 16, 2007, 10:59 PM
Hello, it's me again. I have just come home from hospital, I've had some good news and I'm feeling well. There's not much better than that , is there ? It turns out that the spot on my kidney is just some scarring from previous infections or stones and it isn't anything nasty. Also my physician has decided not to take the advice of the haematologist and he isn't going to ask me to have another iron infusion in ICU or another bone marrow biopsy at this stage. Whew !!, When I was admitted this time I stayed in my street clothes and refused to get into a bed so that it would be easier to refuse treatment and leave hospital if my doctor was going to insist on these treatments. But it wasn't necessary because he couldn't see the point of doing those treatments either. Well, I've had 5 units of blood ( Hb fell to 61 ) and my total WCC has risen to 2.5, I feel great, I'm going to sieze the day and mow my lawn while I can. It's beautiful weather, 25 degrees and a nice breeze with just a hint of a shower of rain coming off the sea later on. After mowing the lawn I'll reward myself with a nice cold beer. I hope you know what I mean when I say that I just appreciate feeling well enough to do (and enjoy)things that I used to think of as a chore. Bye for now. Chirley

Ruth Cuadra
Fri Nov 16, 2007, 11:07 PM
Great news, Chirley. Glad you were able to get away without more tests. What has happened with the hip and shoulder pain you were having?

Regards,
Ruth

Chirley
Sat Nov 17, 2007, 03:47 AM
Thanks for asking. I was so relieved that I wasn't going to have any fancy tests or treatments that I didn't mention my hip or shoulder pain to my doctor. I just wanted out of there while the going was good. However, I've gone to see a physiotherapist who also does acupuncture and she thinks that I have a neck and back problem and has started to treat me for that. Be good if it works but I'm a bit doubtful about it. I'm a cynic at heart and don't know if I believe that acupuncture really works, I suppose I'll soon find out. I'll keep you posted on that. Bye for now. Chirley

Birgitta-A
Sat Nov 17, 2007, 06:47 AM
Hi Chirley,
I admire your spirit:)! Good that your WCC is 2.5 and that your kidneys are OK.
Kind regards
Birgitta

Kitty
Sat Nov 17, 2007, 02:38 PM
Chirley,

Becareful with taking alcoholic beverages if you have MDS. I heard from several people that it can bring your blood counts down and it happened to myself also.

About the Claritin (medication for allergies) it works because of the antihistamines in it. I don't know the details.

Also, I had to stop the Neupogen because it brought my platelet count way down. They added the Neupogen to the Aranesp to see if I could have more time between transfusions but it did not work. Now I get transfused every six weeks (2 units).

I hope everything works out well for you and welcome to this wonderful site.:)

Kitty

Linda Payne
Tue Nov 20, 2007, 02:57 AM
Chirley,
This appears to be a lot of treatment with no definite diagnosis. With four units of PRBC's per transfusion, one would soon have to address the problem of iron overload. Have you thought of getting a second opinion?? Perhaps from a Center of Excellence.
Best regards, Linda Payne, MDS, RA , 5q-: Dx 1988, Tx with revlimid past four years.
Hi, I'm new to the site, I have not been diagnosed with MDS however the numerous Haematologists I have seen all say my bone marrow biopsy (4) results all suggest MDS without finding any dysplasia. Chromosome analysis normal. I have a chronic anaemia which requires 5 weekly blood transfusions, I also have a consistently low white cell count with both low neutrophils and low lymphocytes. Platlet count has always been normal. This first started 4 years ago when I got severe atypical pnuemonia and the doctors noticed that my white cell count was low and wouldn't respond to the infection.

I have a couple of questions for you. Did anyone else have trouble getting a diagnosis ? My Haematologist wants to do another bone marrow biopsy, this time after giving me 8 to 10 units of blood to try and prod my bone marrow into producing more cells so that he has a better chance of finding dysplastic cells . Has anyone else heard of this before ? My disease is complicated by having iron deficiency of unknown origin and extreme allergic reactions to any form of iron (oral, IV, IM). I prefer to think that my anaemia is simple iron deficiency but the blood test results and bone marrow results don't support this.

Thanks just for being there. Chirley

Murphy
Sun Nov 25, 2007, 07:22 AM
Chirley,

Adding to Linda's response, a second opinion sound sensible. I was diagonised by Dr Frank Firkin at St Vincent Hospital, Melbourne and at the moment, under the care of Dr Kerry Taylor at Mater Medical Centre, Brisbane. There were difficulties at my diagnosis and early treatment stage. I believe instinct do tell you who can assist you on the road to recovery and having a positive attitude always help.

Cheers
Murphy

Chirley
Mon Nov 26, 2007, 03:55 AM
Hi Murphy, I have seen Dr Kerry Taylor too. I have also seen Trevor Olsen, Ashish ? Misra, Dr Catley and a couple of others (forgotten their names). They all say that I have a definite iron deficiency anaemia but that I also have a blood picture which suggests that I have myelodysplasia as well. Bone marrow biopsies sometimes show that I have no iron stores and sometimes show that I have normal iron stores. The bone marrow biopsies that show normal iron stores still show that I produce red cells in normal numbers but the cells don't mature properly and don't carry haemaglobin. There has been no explanation to me about the low white cell count. The only cell line that is always normal is the platelets. I have a brother who has lupus and he gets a very profound thrombocytopenia from time to time. He has platelet transfusions sometimes but his body destroys the donated platelets very fast and the only treatment that helps him then is high dose steroids.He is now 56 and this has been happening to him since he was 11. I also have a couple of cousins with auto immune diseases and a family history of hodgkins lymphoma. I personally think that I have some weird auto immune disease and not MDS but I can't discount it either. I always thought that medicine was an exact science but I realise now that things aren't always black or white and there are lots of shades of grey in between. Bye for now. Chirley

Helen Robinson
Mon Nov 26, 2007, 04:32 AM
Hello Chirley

A few comments. from my understanding anaemia in MDS is caused by too many immature red cells which do not deveop and provide the haemoglobin you need. You do not need to have a chromosome abnormality.

About the iron overload. I thought they measured this via the ferritin in a normal CBC not a BMB. Ask what your level is and think about chelation (the new oral chelator Exjade os on the PBS). Once the iron is high it is hard to reduce while you are continually having transfusions.

My husbands GP says that just because you have a rare problem it does not mean that you cannot have normal things such as arthritis. The first thing would be to try panadol and have faith in your physio. Mine is wonderful and the acupuncture can be a magic cure.

I am glad you are feeling better now. Keep smiling

Helen

Murphy
Wed Dec 12, 2007, 02:20 AM
Hi Chirley,

I too have been told that no one knows what the exact cause of my AA is and that used to bug me. I used to feel that I must know the cause so I can fix it and become good again, which might have something to do with the fear of rejection by not able to be perfect. Nowadays I appreciate their honesty and can kind of relate to the need for being brutally honest at some circumstances. I think science will always be science. The grey areas are probably where the profession yet to discover and work on.

I feel for you that some of your families and yourself are troubled by auto immune diseases and hodgkins lymphoma. I was off Cyclosporin a month ago, my platelets had dropped but everything else seems fine. Can't wait to go overseas to Tasmania :D

Murph

Chirley
Thu Dec 20, 2007, 09:00 PM
Hi, I thought I would take this opportunity to wish everyone Seasons Greetings. Good luck and better health in 2008. Bye Chirley

Chirley
Thu Jan 10, 2008, 05:15 AM
Hello, I just wanted to know if any one has any information about portocaths. I was thinking of asking my doctor if I could have one inserted but I met a woman last week who told me that hers was very painful. She said that it was painful all the time and was agony when they tried to access it. I don't know whether to believe her because she was complaining a lot about everything and everything seemed such a drama. I know that people in this forum have mentioned having ports inserted and pain didn't seem to be an issue. Thank you. Chirley

Birgitta-A
Thu Jan 10, 2008, 07:13 AM
Hi Chirley,
One year ago I had a port inserted. My platelets were low and dysfunctional so I took Cyclokapron 1 g x 3 for 5 days before the operation. Then I got 1 unit of platelets. I was bleeding much and the dr who made the operation asked if I had been taking painkillers!

My port is placed very high due to bleeding in the underlying tissues but that is only good - I have seen other patients with ports very deep in the tissues and the nurses have difficulties to use the ports.

The port was painful the first two weeks. After that I have not felt it at all and it is fuctioning very well :).
Kind regards
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days with RBC transfusion every 6th week, Neupogen 2 injections/week, asymptomatic

Chirley
Sat Jan 19, 2008, 05:04 AM
Hello, my Hb last Thursday was 69 and I can't have a transfusion until next Thursday,due to work commitments, when I expect my Hb to have dropped to about 60ish. I do get very tired and short of breath and carry anginine with me just in case I get angina, but one of the things that bugs me the most is a persistent itch and restless legs. It only kicks in when I get really anaemic and tired in any case, and with this itch I can't sleep much at all. Is this a common thing and does any one have a solution ? I can't take phenergan because it just increases the tiredness. Thanks. Chirley

Chirley
Wed Jan 30, 2008, 06:32 AM
Hi, I've just come out of hospital from my last transfusion. While I was in there my Dr said that he would like to do some more definitive tests because he thought that ultimately I will need a bone marrow transplant. I must admit it isn't something I have even considered. Could any one who has had a bmt PLEASE let me know what their experience was like. I don't think I want it but if or when I'm presented with the choice of transplant or death I don't know what my decision would be. I hope I have a long time to procrastinate about it. Also am getting a portacath inserted in 2 weeks time, best part will be no more bruised arms. Hope to hear from you soon. Chirley

Chirley
Mon Feb 18, 2008, 05:15 AM
Hi, I was just wondering if any one else has tested positive homozygous for MTHFR gene mutation. I have just had my portacath inserted and the vascular surgeon who inserted it mumbled something about it being interesting that I had that gene mutation and bone marrow failure. I felt that he was making some connection between the two. I have never seen any articles that associate the gene mutation with bone marrow problems. It would be interesting to know if there is an increased incidence of MTHFR mutations in bone marrow disease. Chirley

Chirley
Sat Mar 1, 2008, 07:33 PM
Hi, I'm excited. I had my portacath accessed for the first time. I was apprehensive, especially when the nurse asked if she could do it for the first time under supervision from the nurse educator. Thank goodness, totally painless. It's really good to have your arms free and be able to do everything as normal. Another bonus, my Hb didn't drop as much as usual. I know this is premature but it is a little bit of hope that the transfusions might be less frequent. My white cell count was still a bit low but not too bad. One thing that I noticed over the last few hospital admissions is that I get a slight temperature (37.6-37.8) every evening. It isn't high enough to be of any concern, it's just makes me wonder why it happens. My holidays are almost over, back to work on Monday, it's going to be hard to get out of bed at 4.30am again, battle the traffic for 2 hours a day and stay out of the office politics. Oh well, someone has to do it I suppose. Bye Chirley

Zoe's Life
Sat Mar 1, 2008, 11:14 PM
Chirley,

How wonderful. Glad things are going well. Will it be good to get back to work, in spite of the traffic and politics?

Zoe

Chirley
Sun Mar 2, 2008, 03:17 AM
Hi Zoe, I don't mind going to work too much but I've been doing it for so long that it has lost all it's challenge. I can do it without even thinking about it. It is mind numbingly boring and the worst part is that I work with people (average age of 10, ha ha) who think it's challenging and exciting. They talk about it even when we're on lunch breaks etc. I find it very difficult to pretend any interest in the job and yet everyone else seems to talk about it like it's rocket science or something. It can be physically challenging sometimes when I'm not feeling well and I wish I could do something that would stimulate me mentally, but I'm a bit too old to retrain for anything else and am just hanging in there for the retirement benefits. I notice that you're from Logan too, only half a world away...... Chirley

Chirley
Fri Mar 7, 2008, 02:49 AM
Hi, I've just come back from my GP. I asked him why I would be getting fevers in the evening when I don't have any obvious signs of infection. He said it's an indicator for leukaemia. My blood tests this time were really good and certainly don't show any reason to suspect leukaemia. Hb 86, haematocrit 2.9, RCC 3.4, WCC 2.9, neuts 1.6 (great!!), lymphocytes .5 everything else in normal range. My question is does anyone else get these evening temperature rises ? I think I'm just after some reassurance that it isn't pointing to an escalation of my disease. Also the GP said that they want to keep my Hb above 80 because chronic low Hb can cause heart failure very quickly. Has anyone else developed heart failure from anaemia ? I know I got heart failure when I had pnuemonia but it recovered completely when my pnuemonia was treated. Also have been getting mouth ulcers, anyone got any quick fixes for them ? Thanks Chirley

Birgitta-A
Fri Mar 7, 2008, 11:33 AM
Hi Chirley,
Joan asked the same question concerning her husband Jan 2008 and then I wrote:
"Fever during the night can depend on that the so called cytokines are more active when we sleep. Cancer cells can spontaneously produce cytokines, small proteins with multiple biological properties. Some cytokines released by cancer cells are "pyrogenic", they produce fever directly by their action on the hypothalamus, which is involved in regulating body temperature. Then the fever isnīt a reason to worry.

If your husband has an infection you should worry. I understand that his WBC:s including the neutrophils are OK and then this info from a MDS-site perhaps isnīt relevant.

“For aplastic anemia, myelodysplastic syndromes and PNH patients, there is no absolute number at which an elevated temperature becomes critical. The most important issues are:
what is your absolute neutrophil count?
what is your absolute lymphocyte count?
do you have a central line or some other "foreign body" in you?
are you having symptoms (chills, low blood pressure, sweating, rapid breathing)?
do you have a source for infection on your physical examination?

Persistent fever should be considered to be an indication of infection until proven otherwise. Indwelling cathers can often be a source of asymptomatic infection. A diligent search for infection should be undertaken. Occasionally fevers can be associated with disease progression to acute leukemia. Fever can also follow transfusions.”

Kind regards
Birgitta-A
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days after transfusion every 6th week, Neupogen 2 injections/week, asymptomatic