What to expect

[Gayle N]

My 20-something daughter was referred to a hematologist after finding low counts (red/white/platelets) in a routine visit about a year ago. Over the last year she has had 2 bone marrow biopsies with no diagnosis except "leaning toward aplastic anemia but not really" told to me by the dr. on the phone - we live in different states. He says a definitive diagnosis isn't possible because there aren't enough cells but that she should come in to discuss the situation. I'm going with her for support and with a medical background (pharmacist). She has no symptoms currently except the low counts. My question is this: Is it reasonable to ask for access to test results (lots of bloodwork and 2 bone marrow biopsies) from the last year? Any other suggestions or ideas would be very welcome, too. This is a whole new thing for us.

[Neil Cuadra]

Gayle,

You should absolutely get copies of the biopsy results and recent blood test results. They are your daughter's medical records so she's entitled to them. The hematologist's office or treatment center might charge you a nominal fee for fetching and copying the records, but many don't do even that.

CBC (complete blood count) charts are pretty easy to read. Bone marrow biopsy reports are harder for most patients and caregivers to interpret so your medical background will come in handy. Forum members often help each other interpret them.

Your daughter's doctor should answer any and all questions the two of you have, but we know that some doctors don't spend enough time answering questions in terms patients will understand. That's why it's nice to have the option to talk to other patients and caregivers too.

Chances are that these test results are going to provide details but reflect what you already know: that your daughter's bone marrow biopsies have been inconclusive because of the lack of cellularity. Empty bone marrow can be a sign of aplastic anemia, as can low blood counts, but that's not enough to say for certain. Diagnosis is the first step leading to treatment, if treatment is needed, so I can appreciate that it's hard for your family to continue not knowing what you're dealing with.

Do you know just how low your daughter's counts are compared with the normal ranges for a young adult woman? Does she have the characteristic symptoms of low blood counts or do they just show up low on lab tests? Has she needed any transfusions? If not, the doctors may be favoring a wait-and-watch approach both because of the low or moderate severity of her symptoms and because of the lack of a diagnosis.

Since your daughter is in her 20s, make sure the doctor knows if she's thinking of having children anytime soon, since that may change their approach to providing the appropriate care for her condition.

[Gayle N]

Thanks, Neil. We'll feel more confident requesting that information now. Values from CBC last summer (from a general practitioner) indicate moderately low levels with no symptoms requiring treatment then or now. I'm guessing it'll be a watch and wait situation but comparing the Dec. and June CBC taken by the hematologist should be informative.

[squirrellypoo]

I don't have anything further to add, but I just want to say hello since I saw you're in State College! I'm a Penn State grad, as are my mom and brother, and growing up in Central PA meant we were always travelling up there for various tailgating and football games.

I noticed you didn't say where your daughter is based - it might be worth sending her BMB results to an expert in AA/MDS to get a second opinion. Even among haematologists, these are very rare diseases so it's worth getting expert eyes on them. Is there an MDS Centre of Excellence near her?

[Gayle N]

Thanks for replying. I'm a State College transplant and from the short time I've been here (5 years) I can see the Nittany Lions have a bond. It's a nice town.
About my daughter's hematologist - she's in Tucson, AZ and was referred to Arizona Oncology but I don't think it's associated with the U. of AZ which is an MDS Center of Excellence. She's a grad. student at U of AZ, though. How does one determine if it's necessary to have a second opinion from a coe and is that something the current dr. should encourage? Maybe he has already sought that consultation. We should find out.
PS JoePa is still here and coaching.

[Gayle N]

Well, we met with Dr. Boxer of AZ Oncology in Tucson and rec'd copies of some of the bloodwork and bone marrow biopsy reports from the last 9 mos. Looks like the rbc and wbc are staying slightly low (3.1 and 3.8) but the platelets have dropped from 88 in Aug. 2010 to 53 in 5/11. It seems the 2 attempted bone marrow biopsies and aspirations (12/2010 and 5/2011) didn't yield enough cells to analyze. The "marrow was diluted by peripheral blood and the aspirate smears contain a rare hypocellular marrow particle with rare marrow elements", but suboptimal for hematologic evaluation. Dr. Boxer apologized several times for not obtaining a good sample and wants to try a 3rd time. It was painful and expensive (grad student univ. insurance) so we're wondering what to do next - what will be different this time? He said he does about 150/yr so it sounds like he's experienced. I asked about U of AZ hematology for a 2nd opinion and he suggested the Mayo clinic in Scottsdale, AZ and said he would contact his friend there. My daughter is active and not feeling any symptoms but I see lots of bruises, probably from throwing herself against hard objects while playing ult frisbee and riding mtn bikes, but still... I've noticed she gets dizzy standing up quickly, but then that's pretty common. Dr. had originally said "AA but not really." Now there's no diagnosis given. The platelet drop is what worries me. Any ideas or thoughts?

[Neil Cuadra]

Gayle,

You're asking good questions but I don't know what the best answers are.

Getting a second opinion is usually helpful, because it either gives you another point of view or gives you more confidence when another doctor agrees. A good doctor should welcome second opinions, not object or feel threatened, and the Mayo Clinic is excellent. However, you can't get a second opinion on your daughter's bone marrow biopsy results because there wasn't enough of a sample, and a history of blood counts isn't going to tell them everything they'll want to know. Since insurance may also be an issue, you could start by asking Dr. Boxer if he's consulted with colleagues at Arizona Oncology or other institutions. You could also check with the Mayo Clinic's insurance department and see how your daughter's college insurance would apply to a consultation at the Mayo Clinic.

Your daughter's hypocellularity has certainly been confirmed, but that's preventing diagnosis of the underlying condition, or at least ruling out some of the possibilities. Dr. Boxer may have apologized but I don't think it's his fault that the sample had too few cells. The fewer cells there are, the worse the chances of getting enough cells for analysis.

If your daughter's counts continue to drop or remain very low, she may have little choice other than another biopsy. If she gets one, it should probably be from another section of bone, for example, left hip vs. right hip, but there's no guarantee of a good sample. Your daughter should insist on more painkillers or stronger painkillers and not suffer the same discomfort as the previous times. Many doctors don't pay enough attention to pain, and they understandably don't want to overmedicate a patient, but that means it's often up to patients to speak up.

You and your daughter should take her low platelets seriously. The doctors know better than us laypersons, but I'm surprised your daughter wan't told to avoid Ultimate Frisbee and mountain biking given her bleeding risk. Nobody wants to take away a student's enjoyment of college life, but you have to be realistic about the dangers of low blood counts.

[Gayle N]

Thanks for the suggestions, Neil. Have you heard of other bone marrow biopsies being difficult to obtain? The Dr. said he had never had this kind of trouble and the only thing that would be different next time is that he'd go deeper. More novacaine was injected on the second attempt but it was still painful. And as we joke, my daughter isn't one to suffer in silence. What other medications do you see used for these procedures - Vicodin or Xanax come to mind? I'm not sure she would want to take them, but if something could help her it might help the Dr., too, to not be rushed or nervous. (Which he seemed last time - esp. when her friend who went for support became nauseous.) Maybe I'll go out for the next one. I'm thinking it'll probably wait until the next set of blood tests in 3 months.

About the second opinion, I guess we'll wait and see what Dr. Boxer comes up with after this last round of blood tests before pursuing. He said he would "talk it over with his Mayo friend." I don't know if that's a full-blown consultation or what. He wasn't defensive or uncomfortable at all when we asked about contacting other specialists.

About the physical activity - Dr. Boxer didn't caution about anything. Online it looks like problem bleeding can occur when platelets reach the 15-30 range. We need to ask at what point action would be needed if they continue to drop. Is that something with which you have experience?

Thank you so much for this forum. Although the Dr. is accessible and answers our questions, it's so nice to be able to talk to others with experience.

Gayle

[Lisa V]

Originally Posted by Gayle N

About the physical activity - Dr. Boxer didn't caution about anything. Online it looks like problem bleeding can occur when platelets reach the 15-30 range. We need to ask at what point action would be needed if they continue to drop.

Gayle

Gayle, I've usually heard 50k referred to as a "safe" range for normal daily activity. Extreme sports are not really normal daily activity, however, so if I were your daughter I think I'd try to avoid that sort of thing, especially if she drops under 50K, which she's awfully close to now.

[Neil Cuadra]

Gayle,

Your daughter isn't alone in having the biopsy problem. Some of my wife's biopsies produced better samples than others. She has had biopsies with ativan, vicodin, valium, and injected lidocaine but still had lots of pain. She had no ill effects from any of them, they just weren't enough.

Then she had some biopsies with propofol (Diprivan), which knocks you completely out during the procedure. That solved the pain problem and there were no after effects. Even better, the doctor got the best samples when my wife was unconscious, perhaps because she wasn't tensed from the pain. However, propofol requires an anesthesiologist or nurse anesthetist, which university insurance may not cover. It might be wise to ask to speak to a pain specialist about the options ahead of time, rather than leave it to the day of the procedure.

If you go along to help your daughter and you are squeamish, hold her hand and/or look at her face rather than watching what the doctors do. Even when kids grow up they can still take comfort from Mom!

Be sure your daughter asks about physical activity. The doctor's advice will be sound, so you just want to make sure the subject comes up.

[Gayle N]

Thank you. This is very helpful.
Gayle