what would you ask an mpd expertbbb

8/15/2019 What would you ask an MPD expertbbb

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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 receivedPlease enter your opinion on the questions you wish. Just click on the blue c in front of each questionthat you wish to answer. A warm thank you to all who participate in this endeavor. Robert Tollen,listowner, http://members.aol.com/mpdsupport Our MPD-SUPPORT-L web site since 1994 offersinteresting information on chronic myelogenous leukemia, polycythemia vera, essentialthrombocythemia, agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis. Anyone - patient,family member, or health professional, is welcome to join our growing list of subscribers.

To subscribe to MPD- SUPPORT-L by email, do the following:

Email to: [email protected] line: blank or just a dash on AOLBody: SUBSCRIBE MPD-SUPPORT-L John Smith(Substitute your first and last name for John Smith's)


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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 arediagnosed?

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 berepresentative 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

drugs?

Is it better to delay drug therapy and use phlebotomies and low dose aspirin for as long as possible tomanage 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 tokeep HCT and Platelets in order?

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


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Do all MPD patients have unusual medical problems, as that has been what I have been experiencingover 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?


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If a stem cell transplant is a cure, then why are not more people doing it/ Cost? Risk? Lack of facilitiesetc?

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 myelofibrosis?

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 andInterferon.

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

What is - in laymens terms - the latest on JAK?

Is anyone working on a cure for PV?


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

New orphan drug possibilities?

I have tried all antihistamines out there for itching and nothing helps. Also ultra violet ray therapynothing 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 doctorswill 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?

IS THERE A CURE? CAN IT BE MANAGED SUCCESSFULLY?

HOW LONG CAN I LIVE WITH IT?

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?


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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, onAransep 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 taketo 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?


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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 Neutare 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 notgood 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 amalso taking 1,000 mg of Augmenten twice a day for six days four to go. Shouldnt 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?


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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?

COULD PV BE CAUSED BY CHEMICALS AT THE WORK PLACE?

WHAT IS THE LIFE EXPECTANCY?

CAN IT EFFECT EVERY ORGAN IN YOUR BODY?

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?


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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 gettransfusions but they seem to add to the fluid in my abdomen is there anything that can be done so that Ican 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 totreating ET?

How will my life change?

How will my (and my families) life change?


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Explain "spent Phase" in laymens 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 lastleg?

Why me?

Why do some drs say there is a spent phase and others don't believe there is a spent phase?


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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 toAML?

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 & autoimmunediseases?

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

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?


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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 dont?

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 prognosisfrom 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 isstable and transplanted years later when disease is more advanced?

What are the newest treatments for agnogenic myelofibrosis and how successful are they?


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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 8mgaspirin 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?


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What is the most important factor I need to know about my doctor to know if he or she is properlydiagnosing 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 defenseimmune 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


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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?


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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 thatmy 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 treatMF and anemia: treatment options and when to treat impact on spleen from transfusions?


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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 permanentremission?

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 willnot cover the only treatment that has helped me - photopheresis - How can I get the ball rolling withMedicare 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?


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