Myelofibrosis

Hi Ruth 

Welcome back - I hope you had a great vacation! 

It wasn't a war, my apologies. 

Dear All,

I know I am new to this (diagnosis Idiopathic myelofibrosis April 2012) However, i have been doing health research on behalf of memebers of our local patient group for epilepsy for which I wa secretrary, for a number of years. (I had epilepsy from age 5 and got better age 37); I was also diagnosed in 1973 with schizophrenia having gone on a vegetarian diet overnight without any knowledge - foolish of me I know. They diagnosed me without consideration of this - foolish of them. One month of hell later I smiled sweetly and left the place to join the Welsh National Opera Company - I am a violinist - I joined them on tour, appropriately with Wagner's The Flying Dutchman! It took me eight years of meditation to get my memory back after the ECT. I gave up the Depixol antipsychotic three years later when I found out they had neglected to give me the antidote to the side effects of stiffening of the muscles - For a violinist! Their mistake was looking for the cause directly in the symptoms!

You never limp onto your injured foot!

Meanwhile, I like the adage: My luck seems to improve the harder I work! I agree, you do need to go armed to your doctor. I have got amazing results by research and questions in the right places.

Check out Thioridazine as well. It might be a convenient use of a tired drug - a moneyspinner, or it might not. I don't yet know! I mentioned this to my doctor. I will post you any more info I get on this.

Hi John, Radiationruth and Cal

I had another doc appointment this morning for bloodwork. My counts continue to DROP.  RBC have been low and now at 3.88, HGB, 12.9, WBC 8.5, LYM 2.4 and platelets at 429k. The nurse said "oh, everything looks fine it's right where it should be." 

Over of the past 4 months my platelets have dropped from 549, 521, 457, 429 today (previously my onc in Largo was happy if they stayed around 600K, then they dropped to 540k. 

Since February this year, my blood counts have done the following: 

Platelets 549k, 521k, 457k today 429k (my doc in Largo used to be happy if they were between 600k and 550k)

RBC = 4.43, 4.02, 3.99, today 3.88

WBC = 9, 7.9, 8, and today 8.5

MID = 1.5, 1.4, 1.4, and today 1.0

GRAN = 5.5, 4.8, 4.5, and today 5.1 (R3)

MCV = 107.6, 107.3, 105.2, and today 103.4

The nurse today said "Oh, everything looks perfect" ... I said "in spite of the overall downward trend in rbc, wbc and platelet counts?" oh yes, everything is right where it should be and it looks like you're improving but I'll let the doctor know the results'

Last month the nurse said as she gave me the blood results - "oh you're getting better!"  

I know what the RBC, WBC, LYM are ... Radiationruth or John, what are the granulocytes and which way should it be going? Is that anything to keep an eye on? 

Becca

What are the granulocytes and which way should the counts be going? 

PS Radiationruth, thank you for the link! I'll go read. I do have a biomedical/laboratory background, it's just been so long since I've dealt with blood counts that I've forgotten. 

Thanks everyone. 

Hello AllGoodWays and welcome! 

Hi everyone - I mentioned PubMed the other day ... I find it useful to see the 'current thinking' in our clinicians - here are the titles and links to some full length articles you might find interesting / useful.  Some of the info will drive you crazy as well! 

The articles are in pdf so you can save them to read later. 

Rethinking disease definitions and therapeutic strategies in essential thrombocythemia and polycythemia vera

http://asheducationbook.hematologylibrary.org/content/2010/1

Essential thrombocythemia versus early primary myelofibrosis: a multicenter study to validate the WHO classification

http://bloodjournal.hematologylibrary.org/content/117/21/571

Management of essential thrombocythemia

http://asheducationbook.hematologylibrary.org/content/2011/1

Management of myelofibrosis

http://asheducationbook.hematologylibrary.org/content/2011/1

the renaissance of interferon therapy for the treatment of myeloid malignancies

http://bloodjournal.hematologylibrary.org/content/117/18/470

Assessing New Therapies and Their Overall Impact in Myelofibrosis

http://asheducationbook.hematologylibrary.org/content/2010/1

dang I cannot find a way to edit posts ... saw a typo in subject header ~looks up and cringes~ just as it was saving. 

Is it possible to edit posts here? If so, how? 

Dear runningmermaid,

I am so sorry I said in my letter thank you to the 'gentleman' who recommended PubMed. I was merely being stupid. My apologies. I was reading the substance and neglected to absorb the source.

I am printing out the article Managing myelofibrosis meanwhile. The more material to puzzle over the greater the power of mind being concentrated on the problem.

On Jun 01, 2012 3:21 PM runningmermaid wrote:

Hi John, Radiationruth and Cal

I had another doc appointment this morning for bloodwork. My counts continue to DROP.  RBC have been low and now at 3.88, HGB, 12.9, WBC 8.5, LYM 2.4 and platelets at 429k. The nurse said "oh, everything looks fine it's right where it should be." 

Over of the past 4 months my platelets have dropped from 549, 521, 457, 429 today (previously my onc in Largo was happy if they stayed around 600K, then they dropped to 540k. 

Since February this year, my blood counts have done the following: 

Platelets 549k, 521k, 457k today 429k (my doc in Largo used to be happy if they were between 600k and 550k)

RBC = 4.43, 4.02, 3.99, today 3.88

WBC = 9, 7.9, 8, and today 8.5

MID = 1.5, 1.4, 1.4, and today 1.0

GRAN = 5.5, 4.8, 4.5, and today 5.1 (R3)

MCV = 107.6, 107.3, 105.2, and today 103.4

The nurse today said "Oh, everything looks perfect" ... I said "in spite of the overall downward trend in rbc, wbc and platelet counts?" oh yes, everything is right where it should be and it looks like you're improving but I'll let the doctor know the results'

Last month the nurse said as she gave me the blood results - "oh you're getting better!"  

I know what the RBC, WBC, LYM are ... Radiationruth or John, what are the granulocytes and which way should it be going? Is that anything to keep an eye on? 

Becca

What are the granulocytes and which way should the counts be going? 

PS Radiationruth, thank you for the link! I'll go read. I do have a biomedical/laboratory background, it's just been so long since I've dealt with blood counts that I've forgotten. 

Thanks everyone. 

Becca,

 Oh, everything looks perfect.

Just kidding.   I hear mostly the same thing.   I think that the power of positive thinking has really taken hold of many of these types of people.  

I only had one nurse tell me once,  while looking at an old lab result of mine from 2006 "Oh s__t, that is really messed up",  and that was in the research section of the BMT team when I was being evaluated for possible BMT.

Ok,  I have my blood results from today in front of me,  so I will see what the heck GRAN and MCV are,  oh wait,  they aren't even on my two page printout.   On mine,  it's the LDH and Blast percentage I hear a lot about besides Platelet count and WBC and RBC.  Also I have no MID on mine.    There are two pages of stuff that means little to me including MCH, MCHC, AST, ALT etc.

Actually my platelets slipped down today to 167, the lowest I ever remember seeing and I was the only one who mentioned it or seemed to notice.   Based on that and my recent experience,  I asked to get only two shots of IF in June instead of three like I had in May.   You don't want to go from 1.2 million to 167000 too fast,  or so I said to myself.

But there is only one decision on the table for my team of doctor and head nurse and me,  to keep the pedal to the metal by keeping up the interferon or lifting the foot off and stopping it or slowing it.   So if I'm not losing weight,  complaining about changes in my life or body,  sweating more at night,  or there are no truly alarming changes in my blood,  then the power of positive thinking outweighs anything else (in their opinion) that they could say or do at the moment or so I am guessing.   Then again,  if I worked at a cancer center and had to deal with what that includes every day,  who knows what my coping strategy might evolve to.   I'm guessing there are about 400 patients a week for the folks I see face to face.   25% of those might be in final stages,  sad to say.   I have overheard some very sad and final conversations in the hallway there and I remember a less than upbeat presentation (putting it mildly:  "get your things in order") to me on the day they got my marrow biopsy back from the lab in the summer of 2010.

Sorry I can't help more with the technicalities,  but I think the blast % is the first thing my people look at.   You get that one?

Sorry to hear that the depression issue could be a sticky point.   Runs with me coming down from my parents.   Never could handle medication for it,  not even for a couple of days.   I am so glad my dog is upbeat.   Cheers me up a lot.   It is really weird how I can pretend to be cheerful around my dog when it hurts so bad inside,  and she doesn't look at me like I'm a phony,  because I know she can see through people.

I'm going to try to research granularity now.

John

Ps I found out Hassidic blood lines have a higher incidence of MF than others.  Doesn’t affect me to my knowledge, but it is another interesting aside.

Becca,

Lymphocyte Percent:  11%

is what it says on todays test result for me.   Is that the measure of granularity do you think?  Don't remember ever discussing this measure with anyone.   Granular.   I feel like I have sand in my eyes.   I'm sure that has nothing to do with it,  just kidding.

And I am guessing that the blast % is the same as the Monocyte percent.   I could use a class in how to read these test results.

John