Need information – Please help

[smfallen]

Hi – I am new to the forum and have some questions. My father has MDS from low platelets. I don’t know what will happen to him – he’s been to the doctor for a bone marrow and the doctor told him to come back again in september for another one and then compare them then. I have been reading that MDS can cause anything from manageable anemia to AML. I am very scared of what this means. Has anyone been asked to go back for a second bone marrow aspiration and then been diagnosed with AML? Please help! I need any information your experiences can give me.

thank you in advance.

s

[franb rars dx 12/06 age 57]

I would ask for a copy of the biopsy report and ask the doctor what type of MDS your father has, there are several subtypes.

It’s hard to know anything without knowing what subtype he has. The MDS foundation can send you a lot of useful info that will explain the subtypes. You can also download info from this site. If you can, go to a Hematologist who is affiliated with one of the “Centers of Excellence” that the MDS recommends. I did and can’t believe how much more knowledgeable the Doctor the MDS Foundation recommended was than my former hematologist.

Good luck to you

[Neil]

Fran provided some excellent advice with respect to having an experienced hematologist treating him. There are several in the Chgo area. It is very important he be treated by a doc with MDS experience!!
A second biopsy is common. when was his first? My first two were about a year apart.
How old is your father?
Does he have any excess blasts? (immature cells)
His classification is important. There are treatments that may help low reds and whites.
I have had low platelets for a little over 10 years. Also low red and white counts.
Platelets were about 35,000 when diagnosed and slowly decreased to 10,000 where they have been for several years.
Does he have any symptoms of low plts? Bleeding, bruising or petechiae? Some of us are fortunate and do not present any visible symptoms regardless of the low level. Since there are no symptoms, my doc and I agree not to attempt to treat this aspect of my MDS
There are some patients with fairly high plts (in the 75,000 range) that experience problems. Believe it is a quality vs quantity issue.
Do you know if he has any abnormal chromosomes? A 20q- for example may provide a patient with a pretty good prognosis.
Do you know if he has hypocellular or hypercellular marrow? Those with hypo do not have sufficient megakaryocytes (platelet producing cells) to produce plts. Those with hyper frequently produce huge quantities of plts, but most are abnormal. They are identified, killed off and flushed in a normal process. The number and quality of those remaining is the significant factor.
I have lead a pretty normal life. Get as much exercise as I can handle, eat a low carb low fat diet (am a diabetic) take Vitamin C, Multivitamin Vitamin B6,with folic acid. NO Vitamin E!
Am extremely careful around power tools, and drive very carefully. Pay prompt attention to any bleeding problems.
Have had 3 platelet transfusions over the years when surgery was necessary.
When plts get low (in the 10,000 range)there is a tendency for lab techs to get a bit concerned. They get too concerned and at times get too carried away. Have him be aware of this, till they have a handle on his exact situation. It can be a bit disconcerting.
There are no drugs that will grow platelets—today. Danazol, and prednisone have helped a few people, but only temporarily. The side effects can be pretty bad.
Would be inclined to put AML in the background till the docs get more specific. About 30% of MDS patient transform to leukemia. Usually they are the higher risk patients. If thrombocytopenia is his primary issue, would be inclined to think transforming to AML is pretty remote
There is a lot more to let you know, but unfortunately all MDS patients are different! We respond differently to the disease and respond differently to treatments.
Other members of The Forum will provide you with their experiences as you respond to some of the questions. It is a great group of people with much experience to share.
.

[krishananth]

Hi Neil,

Your post was real good. The list of questions you have mentioned would occur only on a timely basis but not all together. I think this is a kind of checklist for people to have to generate questions for their doctors and know more about MDS.

I have one question based on what you had mentioned of “thrombocytopenia -> chances of moving to AML are remote”, why is that so?

I assume thromobocytopenia is related to low platelets. My dad has platelets ranging from 20,000 – 50,000 sometime back but over the last 2 months his count has just been 10000, and now over the last 2 – 3 weeks just 8000. we were all so worried because one of the haemotologist whom we visited said it is dangerously low and he needed platelet transfusion. He also mentioned that the chances of the diease transformation to AML are more. but his regular haemo told us not to worry or go for a platelet transfusion unless and until there is a bleeding from anywhere.

However, his blood count is okays… falls as low as 4.4 every month and after tranfusion of 3 packed cells goes up to 9 – 10.

Thanks
Sandhya

[smfallen]

Thank you all for all your help. I don’t know the numbers yet, but I do know that my dad is a 70-yr old diabetic who was daignosed in intermediate-1 phase on the IPSS scale for MDS. He is asymptomatic, other than the blood test revealing what he called “a sever decline in platelets.” He has one of the best doctors for MDS (my dad is in NY). I am hoping that you are right about progression to AML. i am concerned that he will have severe bleeding at some point, but obviously I have more questions to ask. Thanks you all so much! Information is key.

[smfallen]

I also should note that the doctor recommended no treatment for now, but another bone marrow aspiration in september. this sounds like good news to me – i hope. thanks again!

[kls]

My Dad’s Dr. orders a bmb every 3 months. I think that is the only way to check progression of the disease. It is great that your Dad’s platelets are the only part of the blood involved with the disease. That is better! If his Dr. is recommending no treatment, he must be doing ok. Stay involved with your Dad’s treatments…..it will be good for both of you. Good luck!

[Mary4Mike]

Hello Neil,

I am newly registered to this forum, however I have been reading the past posts for about a month. I am finding it all very helpful and a bit comforting to know we can actually communicate and share with others who are also effected by this disease.

You mentioned in your list of supplements, NO vitamin E. I am curious to know why. Does it have blood thinning capabilities?

Thanks for any info you can offer.

[Neil]

Hi Mary,
There is evidence vitamin E adversely impacts platelet function/production in some patients,

[Neil]

Hi Sandhya,
As a rule patients with slightly low to normal RBC and WBC but with low platelets will not progress to AML. About 30% of all MDS patients with MDS will transfotm to AML eventually. The majoority of them will be high risk patients with RAEB.
Thrombocytopenia seems to come in various “flavors”. Some patients display symptoms at counts in the 50,000 to 75,000 range. Others , myself included, do not have symptoms in the 10,000 range. There were time when I had a reading of 3,000. At that point my doc made a slide and counted them manually. They were actually 10,000. The equipment used to measure platelets is just not that accurate when counts are low. There is about 5 liters of blood in the average body. The total platelet volume is about a teaspoonful. Difficult to measure. My platelets are a bit larger than normal. This could be a benefit. When there is trauma, platelets break up and flow to the sight of an injury. Since my platelets are larger than normal we suspect they break up into more pieces and privide an increase in the count. Might be an advantage.
If a patient has low platelets and no symptoms even at 10,000 why transfuse? There are docs who automatically transfuse at 10,000 regardless of symptoms. Why? Remember, a patient will become refractory to platelets after “X” number of platelet transfusions. We cannot have an unlimited number of them.
My doc and I have agreed not to treat my low platelet condition till there are symptoms. It has worked for a little over 10 years. Have has 3 platelet TX over the years when I needed surgery. They boosted my count to around 55,000 and did not encounter any bleeding isues.
It appears to be a quality versus quantity issue. Some of us can get by with 10,000 while others have problems at 75,000.
My comments are addressed to those with low platelets without symptoms.
My BMB frequency is determined by my counts. If they are stable I get a BMB about every other year. If there is any reason to believe something is going on the frequency is increased. Obviously there is reason to have one more frequently early in ones DX to get a handle on progression. As time passes the compelling reason diminishes.
Over the years the only significant change in my marrow has been an increase in megakaryocytes. An apparent effort to increase platelet production.
This will not work for everyone, but I am willing to bet there are others out there that fall into my category.
The key is an experienced doc that has treated a number of MDS patients, particularly those in your classification. The experience factor is a huge benefit.
Procrit and Aranesp have helped my Red cell counts to a very large degree. Not sure what I would do without help with my EPO. My white count has been in the 1.0 area for years. We do not plan any treatment till my ANC dips below 500.
No blast issues.
It appears his regular hemo has a good grasp of your dads situation. Would feel comfortable with him. Again, why treat an asymptomatic condition. Monitor it and be alert to changes.

[Russ P.]

Neil, Your grasp of the MDS situation is amazing.
Too bad the law doesn’t permit you to practice.
Blessings,
Russ

[Neil]

Hi Mary
This is the list of drugs that may impact platelets
Drugs that can reduce platelet counts

Anxiety/Depression
diazepam- antianxiety, tranquilizer (Valium among others)
chlorpromazine – antipsychotic, tranquilizer (Chlorpromanyl, Largactil, Thorazine
imipramine – antidepressant )Antipress, Apo-imipramine, Impril. Janimine, Tipramine

Arthritis
penicillamine-antiarthritic, heavy metal poisoning (Cuprimine, Depen)

Attention Deficit Disorder
methylphenidate hydrochloride (Ritalin) thrombocytopenia purpura is a listed side effect

Diabetes
chlorpropamide-antidiabetic, (Apo-Chlorpropamide, Chloronase,Diabinese, Glucamide)

Gout
allopurinol- Used to control gout (Alloprin, Lopurin, Novopurol, Purinol, Zurinol, Zyloprim

Hair Loss
minoxidil- antihypertensive, hair growth stimulant (Minodyl, Minoximen, Rogaine)

Heartburn
cimetine – Heartburn Tagament, Zantac, Pepcid in same class of Histamine H-2 blocking drugs

ranitidine- H-2 Recptor blocker (Zantac)

Heart Conditions
azetazolamide- Used for Glaucoma, seizures, retention of fluid in congestive heart
Failure, mountain sickness
diltiazem- antianginal, antihypertensive, calcium channel blocker(Apo-Diltiaz, Cardizem)

digoxin- Digitalis preparations, congestive heart stimulant and treatment of heart rhythms. (Lanoxicaps, Lanoxin, Novodigoxin)

procainamide- antiarrhythmic (Apo-Procainamide, Procamide, Procanbid, Promine, Rhythmin)

quinidine- antirrhythmic- (Apo-Quinidine, Cardioquin, Duraquin, Quinora)

High Blood Pressure Water Retention
chlorothiazide- diuretic, antihypertensive (Aldoclor, Diachlor, Diupres, Didudrigen, Diurul, Supres)

chlorthalidone- antihypertensive, diuretic ( Apo-Chlorthalidone, Combipres, Hygroton-Reserpine, Thalitone, Uridon)

furosmide – antihypertensive, diuretic (Lasix, Lo-Aqua, Luramide)

quinapril Hydrochloride (Accupril)

Infections
ampicillin – antibiotic used to treat infections (Amcill, Ampicin, Ampilean, Omnipen, Polycillin, Penbritin, Principen)

cephalosporins- anti-infectives

cefaclor (Ceclor)- cefadroxil (Duricef, Ultracef)- cefamandole (Mandol)- cefazolin (Ancef, Kefzol, Zolicef)- cefixime (Suprax) – cefmetazole ( Zefazone)- cefonicid (Monocid)- cefoperazone (Cefobid)- ceforanide (Percef)- cefotaxime (Claforan)- cefotetan (Cefotan)- cefoxitin (Mefoxin) – cefprozil (Cefzil)- ceftazidime (Fortaz, Tazidime, Tazicef) – ceftizoxime (Cefizox)

ceftriazone (Rocephin)- cefuroxime (Ceftin, Kefurox, Zinacef) – cephalexin (Keflex, Keftab)- cephalothin (Keflin)- cephaprin (Cefadyl)- cephradine (Anspor, Velosef)- moxalactam (Moxam)

penicillin V- antibiotic causes abnormal bleeding or bruising

rifampin- antibiotic (Rifadin, Rifamate, Rofact)

sulfamethoxazole- anti-infective (Apo-Sulfatrim, Bactrim, Comoxol, Septra)

vancomycin- anti-infective ( Vancocin, Vancoled, Vancor)

Inflammation/Pain
Asprin (acetylsalicylic acid, ASA) relief of mild to moderate pain and inflammation. Causes decreased number of white cells and platelets.

Diclofenac- analgesic NSAID, (Apo-Diclo, Arthrotec, Cataflam, Novo-difenac, Voltaren)

Morphine- analgesic, opioids

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