TOPIC:

I have stated quite a few times that a bone marrow biopsy does not determine adequate platelet production, regardless of what we are hearing from our doctors. I have not been able to find any publications that state this. I asked the PDSA if they knew who could answer the question, and it was passed on to 4 of the PDSA medical advisors. This is the answer that one of them gave, the other three fully agreed with the answer:

"I dont understand why anyone would use a bone marrow test to determine whether a patient is a candidate for Nplate or Promacta. My guess is that the doctor making this statement believes that if the bone marrow is normal (normal number of megakaryocytes) or is consistent with ITP (normal or increased number of megakaryocytes) that this shows that the bone marrow is making an adequate number of platelets and that production is therefore "normal" and that the patient is therefore not a candidate for a class of drugs that increase platelet production.

Nothing could be further from the truth. A bone marrow is a static sample and does not tell the doctor whether the normal or increased number of megakaryocytes is actually producing platelets. A large number of studies over the past 9 years have suggested that the normal or increased number of bone marrow megakaryocytes in the ITP patient bone marrow is not producing platelets adequately. Rather these megakaryocytes are probably being attacked by the immune system and undergoing programmed cell death (apoptosis) and die before they have a chance to make platelets.

The bone marrow test cannot be used to determine whether Nplate or Promacta will be effective.

With regard to when to do a bone marrow biopsy, the new (and the old) guidelines suggest that in adults it is rarely recommended except in those who have not responded to initial therapies, those over 60 (to exclude myelodysplastic syndromes) or those contemplating splenectomy. I rarely see a need to do a bone marrow biopsy in most of my patients except for those who fail to respond to initial therapy and those older patients who might have MDS (again reserving it mostly for those who do not have a robust response to initial therapy or those who might have other cytopenias). In a patient who has responded well to initial therapy and will then go on to splenectomy, I dont usually see a need for a bone marrow."

Wow this is great info, thanks Sandi - I think you should thumb tack this one. Erica

Interesting indeed. Even though it's been almost a year, all these big words still throw me for a loop!

Rather these megakaryocytes are probably being attacked by the immune system and undergoing programmed cell death (apoptosis) and die before they have a chance to make platelets

is there a way to check that to know for sure?

There is a test, but it is not done routinely on patients. I suspect it is expensive and time consuming. It is probably easier to just go down the treatment line, because having that information may not make a difference as to what a person might respond to anyway. I think the assumption is leaning toward the possibility that all ITP patients have both problems to some extent.

Do you know why he says those contemplating splenectomy are candidates for BMB?

hey, im booked in for bmb next week. I wasnt really told why and now I am wondering is it another needless invasive test? I am assuming that initial treatment would not mean just one failed treatment as the pred had no impact on my counts at all. However on IVIG I have seen that others seem to have responded much better than what I have done. could this be why the doc has decided to do this test now? I have only had on IVIG treatment am undergoing my 2nd now and wont have any results before the BMB.

Karen - I guess it's just a precaution to rule out other possible causes before an invasive, irreversible surgery is done.

Shen - failing initial treatments may be a reason for a bone marrow biopsy, however, still may not be necessary. What else did you try? Did anything work? Some people get a great response to IVIG and some get no response. It varies. At this point, it certainly wouldn't hurt to get it done (well, it might hurt a bit physically, you know what I mean)!

Sandi the only thing i have really tried is pred, the only treatment i can have at the minute is the ivig because the doc doesnt want to suppress my immune system due to the virus that i have.

on my last appointment the hema rang a virologist, now what ever this person said to my doc had her then scedule the biopsy as soon as she got off the phone. As she had initially talked about getting me off the pred n just let nature take its course with the platelets making use of ivig when counts get below 10.

I responded okay to the ivig but not well enough for the price of it. kept me above 20 for 2 weeks. after 3 weeks i was below 10. there is no way i want to spend 3 days travelling to and frm hosp spending all day there to have something that only lasts 3 weeks.getting last two bottle of ivig tomoz.

Thanks Sandi. looks like il just ave to go for it

Yeah, you have extenuating circumstances. I thought that the fear of it was worse than the actual procedure.

Have they tried one day of IVIG? You might get the same response. Worth a try..

Thats a good call Sandi, think if I need it again thats what i will do.

Thanks, will maybe ask hema a Q or two about the biopsy see if she has anything new to add.

Don't be surprised if she doesn't know the info I just posted. I'm curious to know if she is aware of it. Let me know!

Way back in 1994 I had bone marrow test done but I think in those days they did it to rule out other conditions eg leukemia etc. When a patient is first admitted they like to rule out things so they know what they are really dealing with. No good treating low platelets if it turned out to be Non-Hodgkins..... Not good treating Non-Hodgkins if it turns out to be low platelets. Some things can look similar when the blood is in a bad way at first. Just precaution but it is better to treat the right condition and rule out other possibilities. Yes it hurts but not for long. It don't last long and far better to know for sure.

Had a bone marrow biopsy almost 3 years ago, since then moved to a different state. Already knew I had ITP (age 45 at diagnosis). The doc told me I had MDS and could still have ITP. In the state we're in now, it took me awhile to get a doctor, as it seems no one in the area specializes in platelet conditions, and everyone I called and asked, said "ah, yes, pernicious anemia". So I called a local clinic, and they assigned me to an Internist, insisting that's what I must go to. Better than nothing, I thought. Have had a bleeding incident for which I was sent for a transfusion. Had an endoscopy, for which I was sent to the hospital emergency because I had the temerity to ask if they had the necessary equipment at the clinic for bleeding. Now this was within a few days after transfusion, so they ran a count to check, and freaked, admitting me to emergency. More transfusions. Nurses told me my count wasn't that bad, but docs thought it was, because it had dropped lower than it was before the first transfusion. (Diagnosis AVP in the stomach and duodenum.) Finally, the internist sent me to a hematologist.

My records from the previous state were hard to get, and I don't seem to be able to convince this lot to give me a copy of what they received from the previous doc. Guess I'll have to pay to get those records in my hands! Anyway, the hematologist the internist sent me to looked at the previous doc's evaluation and said he doesn't think I have MDS, and if I do, it is mild. But, he also said he would have to see the original biopsy to be positive, but he thinks I'm too mild to do a biopsy. Would rather not anyway, if you know what I mean.

Now they tell me check platelets every 6 months unless something crops up. If I have slight bleeding, which I have had from the lower colon, to go in as I did when it happened, if I get dizzy, etc., go straight to emergency. (Basically, what was done with the slight bleeding was soft diet, take it easy.)

All tests for cancer have been negative.

Can anyone tell me how long a hospital keeps a bone marrow biopsy on file? And why wouldn't the previous doc have sent that, only his evaluation of the biopsy?

Is bleeding from the lower intestine, colon, common? What is normal procedure for this?

Another question. They have me on iron supplements now for months. Also on omeprazole for stomach bleeding I'm told. (Had reflux before, took other meds at that time.) I am 64. Do these sound like treatments for my condition?

Well, rats! Have read more postings on this board. The doc way back in 1995 did a bone marrow to rule out cancer as I recall, but said he used it to diagnose ITP. Then blood samples 3 times a week, then 2 times, then once a week. Then basically said if I got these huge purple marks, or black tarry, go to emergency.

In second state, 15 years later, that doc did bone marrow to diagnose what he suspected was MDS, after 2 bleeding incidents, about 2 months apart. That was about 3 years ago. That bone marrow was done without even local anesthetic, and was extremely painful. The way it was done was totally barbaric!

So it seems, at least the last bone marrow was not necessary? Wow. Top that off, I think I was caught in a competition between a family practitioner and the specialist. The specialist's office now tells me they have no record of that test! Lovely! Anyway, those two docs were running me for blood work twice a week, because they didn't like the lab the other one used! Found that out when I asked if they couldn't just do one test and share the results.

Did I post my 2 queries right? Am new to posting on the boards. Thanks.

Cate:

There is a lot to your medical history that I don't really understand. Also, you didn't say what your platelet counts were at any point. Pernicious anemia is due to low B-12; did you have that and treat it? Also, why were you on iron? Low reds on the CBC, low ferritin?

If a patient has suspected MDS, bone marrow biopsies are necessary. MDS is more common in people over 60.

Sandi,
Was never told I had pernicious anemia. When I was looking for a doctor in the area we now live in, each time I would ask the nurse if the doc had experience with ITP/MDS. "Ah, yes, pernicious anemia" nurse would say. "No, ITP/MDS" I would say.

History is this:
1995 - Diagnosed with ITP after blood tests found low platelet count, and a bone marrow biopsy was done. Hematologist, after many blood tests later, told me just to watch for certain symptoms, if these happened, go to emergency room. Nothing happened for years.
2008 - In another state, serious bleeding incident (stomach). Because platelets large, clumping, doc did bone marrow biopsy, told me I had MDS. No more incidents until:
2011 - Now in another state. Docs here doubt have MDS, but say do have ITP. Say check platelets every 6 months. Have had one bleeding incident, lower stomach and duodenum. Am told caused by AVMs,which can happen again. Hematologist here doubts MDS, says if I have it is mild. And the only way he can tell for sure is by looking at a bone marrow biopsy, which he does not believe is necessary at this point. (Well, as I say, I'd rather not unless absolutely necessary. And I'd rather not have MDS.) He simply said that different docs see different things. Says do have ITP, check platelets every 6 months. (My family practitioner from previous state only sent his evaluation of the bone marrow biopsy. Apparently not the actual biopsy results. The hematologist/oncologist's office in that state now tells me they have no records on me. It has only been 3 years, can't figure out why that info would disappear from his office.)

Have been told platelets run about half of what is normal. Sometimes platelets have been normal, or close to normal. Current internist talks more about hemoglobin levels being good than platelets.

Iron was prescribed by doc in charge of my case in hospital in last bleeding incident, to restore depleted iron supplies. Is iron supplementation routine after a bleeding incident (64 years old)?

Have been on omeprazole for 3 years now. Doc here says it's because of bleeding in stomach. (I suspect it is more that specialist who did endoscopy this year wants followup endo in a year to check for Barrett's Esophagus, which his PA told me is caused by reflux.)

Levothyroxine is for heart murmur and slowing thyroid. (Does help murmur.)

I do take supplements. Doc is informed, and has made recommendations, changed dosages. Take B,K2,D3, beta carotene, l-lysine, calcium/magnesium/zinc, lutein, chaga mushroom, mega green vegetable tablets, grape seed extract, cranberry extract. Dulse flakes or kelp instead of salt or pepper. Try to follow a macrobiotic diet.

Questions:
Is iron common after a bleeding incident? (Female, age 64.) Have you heard of any risk taking omeprazole with ITP? Is 6 month followup on platelets the norm now? Have read that intestinal bleeding common with ITP; are AVMs also common with ITP? Do you know how long a lab keeps a bone marrow biopsy? Would it be useful to pursue getting that biopsy?

Since it was years after the first diagnosis with ITP to a bleeding incident, guess I am pretty much a newbie at this. Learning to gather and safeguard data better, not to rely just on memory, for one thing!

Sorry, trying to be as precise as possible, noticed I repeated things. Ah, rats!

Cate:

Iron may be necessary after bleeding if the iron was depleted due to bleeding. If not, iron is not necessary. It depends on your levels.

I'm not familiar with Omeprazole.

Follow up on platelets depends on what the last count was and what your normal trend is. If counts are decent, 6 months is okay. Intestinal bleeding is not all that common with ITP...it's actually fairly rare and usually only occurs if counts are really low.

I don't know how long labs keep records. They are all probably different depending on their own policies and state regulations.

If you have suspected MDS, then yes, I would get the bone marrow biopsy if it's suggested. The biopsy is necessary to monitor and treat, if need be.

Sandi,
Omeprazole is in the class of proton pump inhibitor, and is used for acid reflux treatment generally. It is considered by some as better than cimetidine as a treatment with less side effects. Just wondered because I have read that both can cause thrombocytopenia. All of this class can cause bone fracture, so one has to take adequate magnesium.

On the stomach and duodenum AVMs. AVM are clusters of veins that brea

I'm on Apo-Pantoprazole 40MG for mine. When I was first diagnosed, I went off all my meds. I can't go more than 3 days without my "pantoloc".

New question on bone marrow biopsy. What do you do when pain hits in that hip, spreading to your lower spine and leg? It's been 3 years since that biopsy.

I'd had a biopsy before this one. Had 2 weeks of excruciating pain the winter after, then never again. This last biopsy of 3 years ago was not nearly as professional as the first, I do not exaggerate when I say it was primitive. Had about a month of pain the first winter after. Since then, every so often there has been a sort of dull ache in that hip. Now there's pain in the hip that radiates down the leg to the ankle, and also to the lower spine. Been using Ben Gay. Anything else I can do?

CindyL,
The doc says the omeprazole is because I had bleeding in the stomach and duodenum. On the other hand, the gastro doc will be checking again next year for Barrett's Esophagus, which he says is caused by acid reflux. Had reflux 16 years ago, at the beginning of this journey. First took cimetidine, then a purple pill for 21 days, and then doc said take nothing because reflux symptoms were gone. Now omeprazole. Gets confusing sometimes.

Have your doc told to have lots of probiotics? Like yogurt, kefir? Or to take a powerful supplement of probiotics? To keep the stomach and intestinal bacteria balanced?

I had my BMB last year. My Hema wanted to make sure that he ruled out everything and make sure all he had to focus on was ITP.

The procedure for me was uneventful. i was well injected with Lidecane (I think that is the spelling) and really felt no pain after the initial stick. The only thing that I noticed was the pressure on the bone on the back of my hip. If it hurts ask for lidecane, there is no reason to feel the pain. Don't be tough.

Cate,

I'm pretty sure my reflux is from my hiatus hernia. I don't have any bleeding issues.

No doctor has told me to take more probiotics. I am supposed to eat more fiber due to my diverticulitus.

CindyL,
Acid reflux meds and all antacids cause an imbalance in beneficial bacteria in the stomach and intestines. This inbalance can affect health in other ways. Probiotics, or live active bacteria cultures, restore that balance. A lot of yogurts today contain live active bacteria cultures. Kefir is the forerunner of yogurt, and contains at least 10 different live active bacteria cultures. There's also supplements that are handy, especially if you're on a trip. Since I like yogurt and kefir, those are just part of my daily diet. Can get both in either cow or goat milk forms. Getting the goat variety used to be hard. My daughter had to have only goat dairy for awhile, and we had to travel to get it! Now it's available in many grocery stores. There's also rice milk and soy milk yogurt.

I have hernias too. One is abdomen (intestinal), and there's a small one that was discovered when an endoscopy was done, around where the stomach goes to the duodenum.

Also have to have fiber! Originally was told to keep the colon from straining, but is also for hemorrhoids now.

cgoewert,
Lidecane? Is that by IV, or is there a prescription form? I know the first BMB I had around 16 years ago was uneventful at the time of the biopsy, just like you described. (Had 2 weeks of misery first winter after, but took meds, pain did not return.) The second BMB, 3 years ago, was done without any local anesthetic at all. They did it while I was in the hospital for internal bleeding. Waited until the bleeding was under control, then just did it in the room I was in, and believe me when I say it was primitive! Hemo/onc I have now assures me that he would never do such a thing to a patient. The pain I have now is positively from that biopsy of 3 years ago. Starts right at that site, usually a dull ache that goes away. This time it is not going away, so I think I need something for it this time.

I was told that when my 4 year old is older (no idea how old the haematologist meant) they would do a bone marrow biopsy to rule out other things. I'm not too worried at the moment as I'm guessing it's a while away. But do you know what other things they could be ruling out?

I had been on Omeprazole for the last 8 years for G.E.R.D. (acid reflux), when my platelets dropped into the low 20's this spring, they switched me over to Pantoprazole, in fact many of my meds were changed on my diagnosis of I.T.P.

for myself, they did a bone marrow biopsy, after prednisone had no results, I had IVIG, got 24 hours of improvement, recently I finished a Rituxin treatment, waiting to see if it has any long term improvement....

When I had BMB done way back in 1994 I am thinking they did it to rule out Leukemia and was told very quickly by next day I believe that it wasn't that and back to the drawing board. Now I know more about everything, I am guessing they knew it was ITP all along but had to work through the book just to make sure and that everything was a little bit heywire that very fist time I think.

All I know that if I have another BMB done at any time I will know to 'bully' for decent pain relieve as I didn't feel a thing when I had been transferred hospitals. I don't think I felt any pain any later date though. The only pain I now feel is where they removed the 2nd splenectomy the scar tissue, but that is when my platelets are dropping.

May be the pain isn't to do with BMB but other conditions you have?