MDS without dysplasia

[Chirley]

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]

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]

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]

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]

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 didn´t 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.
Kind regards
Birgitta
Diagnosed MDS May 2006 - June 2006. Then rediagnoses to myelofibrosis til September 2007. Since then I have MDS intermediate-1.

[Chirley]

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]

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 don´t think it is a common method.

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.

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

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]

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]

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]

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]

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 don´t mean that you should paticipate in a trial but you have to get in contact with a MDS specialist.
Kind regards
Birgitta

[Helen Robinson]

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]

Originally Posted by Helen Robinson

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 to our Resources page.

[Chirley]

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]

Hi Chirley,
When your white blood cell count is only 2,0 you have to be very careful so that you don´t get any infections- if I was you I shouldn´t 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]

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]

Kitty,

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

The things you learn here

Zoe

[Chirley]

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]

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]

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]

Hi Chirley,
I admire your spirit! Good that your WCC is 2.5 and that your kidneys are OK.
Kind regards
Birgitta

[Kitty]

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]

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.

Originally Posted by cme01

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]

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]

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