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What would you ask an MPD expert?

Sent on Friday, August 9, 2005

By August 28, 2005 approximately 200 responses and over 400+ questions were received

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I would ask when the cure, when the better treatments, and what the future holds in their opinion and
why they feel that way?

What is the prognosis (in years)?

More phlebotomies you get done or high platelets level without being lowered, does it equal to more
chances to go faster into spent phase?

Itching -inherited gene? Leukemia life expectancy?

Do I really need the meds?

Why are phlebotomies enough?

What is the significance of the JAK gene discovery?

Do you believe interferon selectively represses the JAK gene?

What drugs may repress the JAK gene or the mutant clone?

How did I get ET?

How did I get ET?

Will my children get it?

Is there anything that can be done about overwhelming fatigue?

Should I receive active treatment?

How long will I live?

How do we get more experts interested in research on these diseases?

Why is there an apparent controversy surrounding the optimal target hematocrit for phlebotomy

How can the controversy be best resolved?

Ask each expert to place a vote on the hematocrit level he believes to be closest to the optimum!

Should every high-risk patient with ET be seen by an MPD expert?

After 4 yrs on 1 K mgs HU 1 day and having CBCs read by PCP, am I safe?

Would a PCP know from CBCs if 4 yrs of HU is harming me?

What is the prognosis for a person with PV, elderly, who has developed pulmonary fibrosis and
pulmonary hypertension?

Are stem cell transplants every recommended for MPDers over 70?

If you had a serious MPD, where would you go for a transplant?

What is the future of specific MPD research in regards to our daily lives?

When will there be studies and clinical trials consisting of MPDers that were diagnosed pre-50's?

Can we provide information to specialists to create information regarding our lives and treatments as
people diagnosed with MPD in younger years?

Is anybody looking into what causes the gene mutation that eventually causes MPDs?

If not, why not?

How close are researchers to finding a targeted treatment for the MPDs other than leukemia?

I have had ET dx for years I now have "mild reticulin fibrosis" per bmb, and anemia per CBC.

Does this mean I will develop MF?

Itching treatment, fatigue treatment, quality of life treatment?

What is the average life expectancy of a PV patient diagnosed in her 30s?

What is the primary concern of having the disorder Polycythemia Vera?

Do you think Interferon really can halt the disease progression?

Do you truly see any breakthrough down the pike in treating our diseases?

What do so-called experts have against interferon?

Do you see any cure in the near future?

How often should one have a BMB?

How important are the MCV, MCH, and MCHC levels?

If these three values are all high and rbc is low, what are the dangers?

Is 1000 mg Hu and 8 mg aspirin a reasonable treatment in this case?

What are the long-term effects of hydrea?

Are food sensitivities typical of MPD patients?

How long do you predict the more targeted therapies coming out of JAK research will take to mature?

Do you find that your MPD patients have bone pain in long bones but not all?

Do you find in your patients many have hypothyroidism and visual migraines before they are

I had radium needles as a child does it play a role in MPD?

A Jak question, A question about anagrelide promoting MF, what else besides JAK?

Could a better bone marrow test be developed? My understanding is that the present biopsy may not be
representative of the whole marrow, for instance in measuring overall fibrosis?

How long till a genetically tailored med for ET? Thank you.

For a young person 30 to 50, why use hydrea when there are no contraindications to other less cytogenic

Is it better to delay drug therapy and use phlebotomies and low dose aspirin for as long as possible to
manage PV?

What are the most likely environmental elements, conditions, exposures that could enable a person
predisposed to get an MPD to get one?

What is the expected life expectancy of a PV patient- dx'd at age 50 receiving regular phlebotomies to
keep HCT and Platelets in order?

Why are so many people think they are going to get Leukemia from use of Hydrea when MPD-L and
statistics show otherwise?

Why do I have pain in my feet with PV and Neurologists and other doctors cannot find a reason?

What are the chances of my children having an MPD condition?

What are the chances of my children having an MPD condition?

Do all MPD patients have unusual medical problems, as that has been what I have been experiencing
over the years?

Is the stem cell research benefiting our cause?

Will there ever be a cure for polycythemia vera?

Is PV hereditary?

Based on the most recent data, what is the projected life span for someone with PV?

What proof do you have that a baby aspirin will help me more than it hurts me?

What is the cellular mechanism for interferon's effect on myelogenesis?

I am having a hard time finding a doctor in my area who is able to under stand the MPD procedures?

What is the percentage of those with MPDs who have a family history?

Are there early warning signs that someone may develop an MPD?

Will cord blood-banking help in MPD potential future cures?

If you are diagnosed with PV, when will you know that phlebotomy is not sufficient treatment?

Why do some people with PV have severe bone pain no matter what their counts are?

What causes fatigue in PV patients?

Muscle Spasms in the calves of my legs (charlie horses) when I am in bed or up walking around, never
had them before PV, what causes them?
If a stem cell transplant is a cure, then why are not more people doing it/ Cost? Risk? Lack of facilities

Can a reduced intensity matched unrelated transplant cure myelofibrosis?

What are the chances of severe graft versus host disease following a reduced intensity transplant for

What would be the long-term effects?

Can we expect soon a 100% recovery from MF, without transplantation?

What is the best medicine to become transfusion independent (MF)?

What do you advise to do after diagnosed with MF?

Is polycythemia vera cancer?

Why does a phlebotomy work as I thought the body would perceive it as a bleed and fill up quickly?

Why do doctors not know how to treat the symptoms of PV Vera?

Please do more research on pregnancy and breastfeeding in relation to the medications, Argylin and

Please find out how to stop the progression of the disorders.

What is - in laymen’s terms - the latest on JAK?

Is anyone working on a cure for PV?

How long before I can expect a cure for MF?

Does Agrylin really cause anemia & fibrosis?

I have both ET & MF, should I stop taking Agrylin?

Is there anyway to control the dizziness?

Is there anyway to help with the fatigue?

What research is being done on polycythemia?

How soon will there be a more targeted treatment modality for ET & PV?

Where is the origin of AMM, bone marrow, blood, and spleen, somewhere else?

Does high blood pressure increase the risk of morbidity and/or mortality in patients with ET and PV,
even if the blood pressure is controlled by BP reducing medications?

Which class of BP reducing drugs offer the best protection?

Where, in what organ, does AMM originate, marrow, blood, spleen, elsewhere?

Is AMM caused by a virus, genetically, bacteria, something else?

Can or does a person's enlarged spleen stop growing at some point or will it always keep growing?

Based on the most current findings, what is the basic course of treatment for a newly diagnosed
polycythemia vera patient who is otherwise in good health?

What is the role of coumadin in treatment of PV?

What hi blood pressure meds can we use (some say "not for those with blood dyscrasias")? if we have
renal damage?

New orphan drug possibilities?

I have tried all antihistamines out there for itching and nothing helps. Also ultra violet ray therapy
nothing helps. Do You have any other answers, as I have itching constant.

I have ET. How much will the disease shorten my lifespan?

I get migraines -4 times per week Agrylin makes these worse, but I had them before -- maybe part of
the disease I've applied for social security disability, but its a tough go.

Why is to hard to diagnose MPD I was diagnosed with ET in 1989 with a BMB, but still new doctors
will say that I don't have an MPD and make me feel CRAZY!

Do you prefer HU to Ag in the treatment of ET in the over 50s?

What is the risk for someone over 70 to taking Agrylin?

What percentage of myeloproliferative disease patients have mitral valve prolapse?

How long would you say a person of age 70 would have a remission of ET after taking Busulphan?

Would being around turpentine and paint have any cause of MPD diseases?



Why has the survival time for MF gotten longer than was earlier talked about? from - yrs to 0-5?

Could it be that many are having BMT and some are really surviving and that has put the time longer?
Why don't doctors recommend vitamins & diet?

I am a 70-year-old female I have MDS/RA, 7 years with year remission. Now transfusion dependent, on
Aransep and Deferral pump for iron overload.

Are the new drugs Revimlid and Excade possible aids to put me back in remission?

Is it acceptable for the Hct to be higher when living in high altitudes?

What are the probabilities of the MPD's to be genetic?

Why does it seem that it is showing up in younger people than in previous times?

Is there any way to stop the headaches I get from the disease process itself and or from the meds I take
to treat the MPD?

How many of you say to get a BMB at diagnosis?

Is there a true ET and a false ET?

How many of you agree that "embryonic stem cell" research should be funded by the government?

How close are you to a cure?

I hear conflicting stories about life expectancy with ET. What is my life expectancy?

Is Agrylin as dangerous as others say it is? I'm concerned because it seems to work for me.

How well is the research going?

How long until we can be cured?

What causes MPD?

Is Jak targeted therapy on the horizon?

What is the number when your white count is considered dangerously high?

I have ET, had a BMH January last year and have not gone back onto INF because my WCC and Neut
are consistently below normal and Plat at currently 5000 so if all is relatively in order why am I so tired?

Have the MPDs ever been associated with a monoclonal protein in either serum or urine?

What prednisone dose causes diabetes?

Where can I get the best information and the best Drs for MPD?

I have myelodysplasia and myelofibrosis my spleen was removed in May my blood counts are still not
good what is next?

How soon will hematologists offer selective eradication of impaired marrow stem cells?

I have swollen glands in my neck, they are soft smooth and sore. My white blood cells are 70,000 I am
also taking 1,000 mg of Augmenten twice a day for six days four to go. Shouldn’t the swelling be gone
by now?

Don't you think some kind of government support should be given to those who have this illness?

Do your patients have thyroid problems before this illness?

Do notice PV clients have visual migraines and bone pain when having this illness?

How does the disease ET occur?

If you have ET and then conceive a child, will this cause the baby to have ET?

What causes ET?

How long do you think it will be until there is a cure for myelofibrosis?

How long do you think it will be until there is an effective treatment for myelofibrosis?

What can I do as a patient to expedite the process of finding a cure or treatment?

Is it safe to drastically reduce my dosage of Agrylin?

Do you feel there is reason to be optimistic about the discovery of the JAK- malfunction?

What will be the timeframe of therapies developed from the JAK gene?

What can be done for excess sweating?

Why when I doubled Hydrea as my doctor suggests do I get a dull ache in the kidneys?

Connection PV and high cholesterol?




In your opinion, how long will it be until a cure is found for any of the MPD's?

Why do some patients experience a great deal of pain, but others not much?
What is current thinking as to life expectancy for each MPD?

How often should a bone marrow be done on pvera pts?

Interferon seems to be the one of the best treatments for P vera?

Do you see a lot of upper gastric problems in P vera?

What are the symptoms and effects of "end stage" myelofibrosis?

What does the future hold for continued research of the MPD's?

I am on Hospice care now but am not bedridden My spleen and liver are VERY enlarged I can still get
transfusions but they seem to add to the fluid in my abdomen is there anything that can be done so that I
can be more comfortable?

What effects/complications can arise during pregnancy?

What does the future hold for continued research of the MPD's?

Do you think, in my lifetime (I am 57 y/o), there will be a cure for any of the MPD's?

I was diagnosed with PV in April 00 Hct 6 On hydrea Bcr-abl+ late 00 by rt-pcr last year by Q PT-PCR
bcr-abl disappeared Will it come back?

Can you disclose your current ties to drug companies that produce medications that are geared to
treating ET?

How will my life change?

How will my (and my families) life change?

Explain "spent Phase" in laymen’s terms.

Why do I have no energy or desire to do anything?

How close is a cure of myelofibrosis?

Does ET cause fibrosis and to what extent?

Can ET morph into myelofibrosis?

If interferon is chosen as treatment of choice for PV, what are the pros and con's of Peg-Intron vs.
interferon , 5 or 7 days per week?

What percentage of patients on interferon develop fibrosis, but do not experience anemia?

Life expectancy with myelofibrosis?

Effects of long-term use of hydrea?

Expected platelet count with myelofibrosis?

What % of patients on interferon develop fibrosis, but do not experience anemia?

Does scarring from past bone marrow biopsies affect subsequent biopsies?

Why can't someone with PV have a BMT while their health is still good instead of being on their last

Why me?

Why do some drs say there is a spent phase and others don't believe there is a spent phase?
What is the difference between MF, AMM, and MM?

What is the difference between MF/AMM/MMM?

What are the stages of Myelofibrosis (i.e. how advanced MF is in relation to life expectancy)?

When do we know it is time for a bmt, i.e. we know there is not more time to wait before it turns to

When will a drug come out to help us?

Why am I always tired?

Why is there no cure?

Is there any connection between MPDs & immune system diseases such as Crohn's & autoimmune

Are there any studies that show long-term (5+ years) PV patients being diagnosed with Primary

What would be your treatment plan/goals if diagnosed with PV in mid-30?

Where are funds allocated for treatment advances?

When will we have access to definitive guidance re effacy of AG Vs HU-some we can trust?

If I'm 7 yrs post diag w/PV, and never had a BMB, is there any value now in doing so?

Age 69, 7 yrs post diag w/PV, how long can I live w/good quality?

If your disease has been slow growing 6 years, (ET), then is it likely?
I was told in 1985 that people with ET have a shorter than normal life expectancy Is that true?

Is ET a cancer?

Do ET patients suffer from tiredness as I do and my hem says they don’t?

If I have jak in my blood what news is there of a cure?

How can I improve the fatigue issues I have?

After reaching complete remission, what are the chances of a relapse?

Is there another option besides BMT in case of relapse?

What causes CML ?

How can I improve the fatigue that plagues me all the time?

How can this be explained to friends and family in simple terms?

How long does it take the average PV patient to get their counts under control?

How to correctly distinguish early myelofibrosis from essential thrombocythemia correct prognosis
from early myelofibrosis for person under 40?

Role of interferon versus hydrea for early myelofibrosis?

Role of autologous transplant for early myelofibrosis when stem cells collected early when disease is
stable and transplanted years later when disease is more advanced?

What are the newest treatments for agnogenic myelofibrosis and how successful are they?
Should a 97-yr-old woman in otherwise excellent health, living independently, recently diagnosed with
PV, take hydroxyurea 1000 mg/day?

Or should she just let things develop as they might?

What is the best treatment for mouth sore?

What different symptoms does a PV patient have that an ET patient doesn't have?

What is the best way to shrink a spleen?

Do you have criteria to tell you when to remove a spleen and when to leave it in?

How do you know that myelofibrosis is not an autoimmune disease?

Could ET be caused by the hormone change in pregnant women, provided it is more often happened in
women? Do you see a link?

Anybody studied hormone and ET?

Living on a rice farm that had to be sprayed for weed, would that attribute to polycythemia?

My children were born at the time that the spaying was going on. Would that be something to worry

Correct counts for polycythemia?

What is my chances of passing this to my kids?

Why do some say ET is cancer and others say it is not?

What would make MPD wake up in a person and make it become active and in such younger people?
Are their any new protocols for treating PPMM?

How long can one live with PPMM?

Does PPMM ever progress to AML?

Has anyone ever been cured of an MPD, where cure is defined as 5 years in remission?

What is the expert opinion about the outlook for possible MPD cures over the next 5 Years?

Is MF considered a terminal disease?

Are there distinguishing differences between levels of PV?

Is there a critical point where HU needs to be started?

Why such big differences in dosages of HU between PV patients?

Is there a diet that would help with pv?

What can I do to help myself?

Is there a cure in the future?

Is there any research being done on persons with ET over 50 not taking any medication except 8mg
aspirin daily?

How far away from developing new treatments for ET are we?

Are there any natural or alternative treatments for ET that work?

Does exercise help ET, and if so, what type and how much?
Does exercise help ET, and if so, what type and how much?

What is the most important factor I need to know about my doctor to know if he or she is properly
diagnosing and treating my PV?

Do you feel it is necessary to see an MPD expert to work with your own doctor?

What can I do about this damn itch?

Is there any research on how effective exercise is in controlling you hematocrit if you have
polycythemia vera?

Does limiting glucose consumption deny the red blood cells nutrition, like denying iron would?

Are experts working on a cure/other treatments?

Why do hem/onc believe that ET does not need to be treated until counts are over million?

Why do hem/onc not understand that symptoms from ET can happen even if plts are 500K or less?

Upon death, would any part of the body be beneficial for researchers to have?

If one has others in their family with blood issues, should children be tested--if so, at what age?

Beneficial to early-on harvest own cells for future use?

I have been diag IMF After extensive diet modification, hydrea and exercise I am symptom free MY
blood no's are at 90% of norm.

Do you know of any cases where diet and nutrition healed someone by activating our own host defense
immune systems?

Is this a Cancer?

Why do most doctors not see the female goals for blood counts different then men and how do you fix
that It's been a battle.

I am 80, female with ET, no meds Diagnosed three years ago.

Experiencing variety of symptoms from migraine, fever, internal bone pain, fatigue, etc.

How do I manage internal bone pain?

At 58 female with ET, what is the life expectancy?

What complications (no meds) are most common?

What is the life expectancy for MF patients?

Do natural supplements speed the progression of our diseases?

When is the right time for a bmt?

What tests should be run when on INF?

Will their ever be a cure?

Why are the effects of the disorder so vastly varied from person to person?

How can I help find a cure?

Will agrilyn ever get cheaper?

What is the chance of a MPD transforming into a different type of MPD?

How long is the life expectancy of the different MPDs?

How does the disease spread genetically, (what are the chances of passing this on to offspring)?

Has my MPD shortened my life?

What do the doctors know that the patients don't know about MPDs and the treatments?

Will there be a cure or better treatment in my lifetime?

How close are they finding a cure for polycythemia rubra vera?

Are their any studies in progress that deal with the spent phase of polycythemia rubra vera?

Do they plan any continuing education for hem doctors for polycythemia?

Why is MPD ( ET in my case) so hard to get a diagnosis for? I have had too many doctors imply that
my symptoms are all in my mind?

Why did we get ET?

How can we prolong our time?

How can we find a provider that understands our symptoms and does not discount them?

Can ET with MF be cured with BMT ?

After the BMT can the disease come back ?

Did Agrilyn caused my MF ?

MF and spleens: how to monitor growth, rate of growth expected, treatment options and when to treat
MF and anemia: treatment options and when to treat impact on spleen from transfusions?
How do keep a check on et to see if it is not changing to another MPD?

Around persons with ET claimed remission after prolonged treatment with interferon. Is that permanent

Does interferon inhibit spleen enlargement and possibly reverses some enlargement?

In addition to JAK-, what other mutagenic?

I had myelofibrosis and had a stem cell transplant now I have Graft VS Host disease and Medicare will
not cover the only treatment that has helped me - photopheresis - How can I get the ball rolling with
Medicare to review this?

How many people with ET develop Hemiplegic Migraine and what is the treatment?

In familial Et what percentage of children develop the disorder?

Why do my platelets have to be kept between 75 and 5 otherwise I start having strokes?

In your opinion, is Agrylin or Hydroxyurea the better choice for ET?

My platelets were 1.6 million when diagnosed I am 45 now, and have had ET since I was 40 years old.
The Agrylin keeps me down at 05mg 3 x per day 3 days a week, and 2 x other days.

In your opinion, is Agrylin or Hydroxyurea the better choice for ET?

My platelets were 6 million when diagnosed I am 45 now, and have had ET since I was 40 years old.

The Agrylin .05mg 3 x per day 3 days a week, and 2x other days.

What is the life expectancy for a person diagnosed with PV at the age of 12?
What will the quality of life be in future years for that same person diagnosed with Pv at age 12?

What are the chances that PV will change over to MF when diagnosed?

What is the life expectancy for a person diagnosed with PV at the age of twelve?

What will a person’s quality of life be like when they are diagnosed with PV at the young age of

How long can a person take Hydrea before there is a concern for them?

What is known about the lifespan expectancy of a 5 year old male who had a stroke recently caused by
undiagnosed PV?

Are there any studies of people who have had a stroke caused by PV?

How does one find out about genetic markers?

Is there another way to check bone marrow in overweight people besides the hip biopsy?

Does weight have anything to do with the onset of ET?

What are the complications to watch for when ET?

Is there another way to check bone marrow in overweight people besides the hip biopsy?

Does weight have anything to do with the onset of ET?

What are the complications to watch for when ET is progressing from one disease to another?

My hematologist called ET a chronic cancer of the blood. Is this true?

Is it inherited? Is there any treatment?

My hematologist called ET a chronic cancer of the blood Is this? true?

I had a severe nosebleed that had to be cauterized in the emergency room. Is this a side effect of ET?

What are the long-term effects of AG; how long can you take it?

Why no cure?

Why me?

Why not use the phelebs for infusion to others?

How close is a cure for MPDs?

Where is the best place to go to participate in a clinical trial?

Is interferon our miracle?

This question & answer concept was created by Robert Tollen,

OK to redistribute to help others.