What are the most important questions to ask my hematologist

[J.claire]

It has been 2-1/2 weeks since my mds diagnosis and I have decided to ask my doctor some questions. What are the most important questions? I am thinking that I want to ask him if there is any chance that the bone marrow biopsy results could be misinterpreted, or if not, why. My marrow is hypocellular (20% cellularity) whereas the majority are full of cells. Also, I am a bit young for this. But I am asking you folks what you would ask. At this time his office is arranging a second opinion at Dana Farber (I think it’s Dr. Stone) but no dates yet. My hematologist also has already suggested the bone marrow transplant as his opinion of the best option for me. Thanks for your suggestions!

[willie]

J.claire What are the red, white and platelet counts? Have they given you a blast % in your marrow and in your circulating blood? What is your prognosis index (in years) if left untreated? What treatment options are available? Here you can read through the correspondence on this forum and get a good picture of the options. Which treatment option do they suggest and why. Where are you on the RA severity scale. I think there at least 4 severity levels.
It will take some time but read through this forum. It would have been good for me when my wife was first diagnosed.
Willie

[Kiwi Ken]

Ask for a WHO classification and full blood count, especially red, white and platelets. Then regular monthly blood count and check for variations. This way you can see for yourself which way the MDS is going. Its best you learn every thing for yourself and to the best of your ability.
Good luck

[J.claire]

Dear Willie and Ken,
WHat good advice! I have been doing lots of searches of this forum and I have learned more that from any other source. What a help to me. Also, I am going to ask my hematologist if I can have monthly CBC’s for a couple of months. I had one on 9/1/06 and my next one isn’t till January. I would like to be able to see the numbers monthly for a little white to get a feel for the natural variation in readings, plus sometimes waiting I begin to worry. Good ideas. Thank you so much.

[Bkwits]

My husband Joe’s hematologist had told us that Joe could come in anytime to get a CBC. He didn’t need to see the doc unless his counts very bad. We also received a copy of all the tests. I also am very thankful for this forum. Between the time that we were first told that Joe had MDS (I had never heard of it) and the second BMB which showed CMML, I had learned so much that I at least had some idea of what the doc was talking about. He referred to it as CMMoL. I knew enough to ask him if it was the same as CMML. He said that it was. Good luck and God bless. Barb

[Neil]

a
A LIST OF QUESTIONS FOR A DOC

How much experience have you had treating patients with MDS?
How many MDS patients do you treat? How are they doing?
Are you affiliated with any research group or hospital that specializes in the study of these types of diseases?
Can you give me the names of other patients with MDS that I can talk to?
What is your treatment philosophy? conserative, moderate or aggressive?
What are your usual treatment recommendations for MDS?
What course of action do you recommend in my case?
What has been the record of success for this treatment and how was it measured?
How long will I need this treatment?
How will the treatment be administered?
What is the criteria for discontinuing the treatment?
Is this treatment designed to increase my counts temporarily or permanently?
What would you recommend next if this treatment fails?
What are the side effects of this treatment?
For which side effects should I contact you?
Are there any precautions that can be taken to minimize the side effects?
Can you give me the name of someone else who has had the treatment?
Will I develop other medical problems from this treatment?
How will you monitor the treatment progress?
What is the cure for MDS?
Can I develop cancer from the treatment?
Do you have or know of any articles or other sources of information about the treatment?

[uno grasshopper]

Hi J.Claire:

From your description of your marrow cellularity and current CBC counts as of Nov 9 being “RBC=3.4, Hgb=12.0, Hct=34, Plt=164, WBC=2.4.” I would guess that your hemo is “aggressive” in his treatment approach if he is suggesting BMT only after 2 or 3 weeks after your diagnosis. A BMT is pretty much the most aggressive form of treatment for this condition. You’re not even near transfusion level yet and if you’re RA, then it doesn’t seem that you have excess blasts. Personally, if I had any doubt or uncertainty that my BMB results might be interpreted differently, then I would get a second and maybe even a third opinion before submitting to a BMT. Keeping track of each CBC is also a good idea so that you can see any trends.

What I would ask him in addition to what Neil suggested above,

1). What is it in your marrow studies that indicated to him with certainty that the BMB result is MDS-RA.

2). Why would he suggest a BMT as opposed to a milder treatment for your particular case? How many MDS-“RA” patients has he treated with BMT and how many were successful? And how long out of transplant are they? There is a lot to know about BMTs that you’ll likely have to study on your own.

3). Would you be placed in a clinical trial? And if so, how is he involved with it? Does he get paid for enrolling you in a clinical trial? I was recently reading a book by Marcia Angell, M.D. who worked with the New England Journal of Medicine for 20 years and was their former editor. She wrote in her book, The Truth About Drug Companies, that doctors commonly are “paid” to enroll patients into clinical trials. She wrote that in 2001 doctors were paid an average of $7,000 per patient that they enrolled in a clinical trial. Make sure your doc’s recommendation for you isn’t motivated by a cash incentive to get you into a study above what you’re already paying him for his services.

Neil asked a lot of good questions, but there was one question that I would really like to hear an answer to if your doc has one (other than the common party line). That is the question of “What is the cure for MDS?” From much of the medical literature I’ve read, there is no cure for MDS “EXCEPT” a successful BMT. Anything else in medico lingo is either remission or disease progression in varying rates once diagnosed with MDS. Then you’ll have to research what their definition is for “success.” You may find that your definition of “success” is not the same as their definition. My “suggestion” is that with whatever decision you make, make sure that you and your doc are using the same definition to words. Things like “cure,” “remission,” “partial remission,” “success,” etc. can take on a whole new dimension when speaking medical lingo.

Hope this helps, and take care,

Marla

P.S. I think you mentioned that you run every day? I have noticed that there are several runners who have blood conditions. I can personally think of about 5, not including you. It has been my suspicion that some runners over-exert themselves. You may be aware of “runner’s anemia.” I do believe “endurance” running can be very taxing on the body, so long-distance runners really need to make sure that they’re getting enough nutrition and rest to make up for all the energy expended during all that running. (I think running is good, just that “endurance” running can be more taxing that just your average jogger, and thus you need “exceptional” nutrition, not just adequate nutrition to keep up with ordinary body demands). If you haven’t had your iron level checked yet, I would suggest that be checked as well as your B12 and folate.

[Neil]

There is another possible cure for MDS with a bit less risk. A stem cell transplant. That is if you have a sibling donor that is a 6/6 match. Usually does not involve radiation and involves less toxic chemo.
Can put you in touch with one patient who had one at age 56 in June of 2000. She is in complete remission at this time.
If you do not have a sibling donor Matched Unrelated Donor (MUD)may be a possibility. Suggest you contact Dr. Richard Childs at Yhe NIH for more info on this possibility.
Both a BMT and SCT have substantial risks. Would be very sure of the odds for success vs your prognosis if you elect go with supportive care.

[J.claire]

Dear Neal and Uno,
You have expressed exactly they general thoughts I have been having in two areas, one being the diagnosis. I read a transcript of a presentation on 11/16/06 by DRs Estey and Gore (link: http://www.leukemia-lymphoma.org/graphics/National/MDSFinalTranscription.pdf ) where they say that about 10 percent of the people who are send to md anderson with MDS diagnosis don’t have it, they also talk about the real risks of transplants, and, expecially, the hypoplastic people, like me, who respond to immunosuppressive therapy. My hemo, with umass medical (where they do a lot of trials and follow a lot of mds folks), told me on the day of my diagnosis that I should not trust any doctors, always question, and especially, be careful of trials. He said my age, 50, and my good health, made him suggest transplant. But, he also said he wants another lab to read my results, and when questioned on friday, agreed with me that it is possible that another lab could make a different diagnosis. That’s why he is making me an appointment at dana farber. Do you think I should ask them to do another biopysy, if they are going to just use the old one? Pretty soon, I will learn all the abbreviations you folks use, and my posts won’t be as long.

[J.claire]

Dear Marla, I also wanted to address something you said, because I am really worried about it. It is your comments about running and nutrition. About 4 years ago, I lost 100 lbs and became a runner and I eat incredibly healthy. But, since this mds thing, I have wondered if I’ve gone too far. I would never admit this, even to myself, because I have worked so hard to be in shape, and my cholestral, bp, etc., is so good. But could it be that all the exercise has affected my marrow? I don’t know. It has been in the back of my mind. I read all the info on runner’s anemia, and even gave copies of it to my hemo. He discounted it. He said it could cause slight dillution of the blood, but not to this extent. Just so youknow, I’m not a competitive type runner. I average about 12-13 minute miles, and I run for pleasure in the woods and fields to gain spiritual strength from nature. I know I get enough of all the nutrients because I have carefully made sure of this. I even eat 2X the protein I need. But, still, you made a point that has really bothered me. Are these other 5 runners hypoplastic? Are they here on this forum so I could talk to them? Thank you. I can’t possible express how much I am gaining from all of you on this forum. I have so much to think aobut that it is overwhelming. But, mostly, I keep t hinking that the diagnosis could be a mistake.–ThaNKS.

[uno grasshopper]

Hi Claire:

There are two girls on the aplastic anemia forum who seem to put in a lot of mileage on during their runs. Both, IIRC, had hypocellular marrow. Both seem to be on the mend now, one had switched over to swimming for a while. Not sure if she’s back to running long distance again. I do think they are still checking in on the forum at http://aplasticcentral.com/test/toast.asp?sub=show&action=topics&fid=2 where you can also post. Their names are Serena and Becca.

I read of another gal (again, marathon runner who actually competes) who developed AA, then underwent a BMT of which did not take(generally AA cases are hypocellular). Fortunately, even though her transplanted marrow did not take, her own marrow came back, and she’s back to running again. I think she went on to be a doctor in the UK. Her mother was the one posting on the forum, and I don’t know if she’s still on there as this all happened about 3 or 4 years ago, now. But you can check at http://forums.marrowforums.org/ and post see is she responds or if anyone who knows her can give you her email address. I believe the mom’s name is Lisa Stock, and her daughter is Nadia (now Dr. Nadia).

Then I have two friends who are now gone, one was John in Gr who ran 3 miles a day, and just before his counts really started to take a dive he had gone on a 15-mile-run called the River Bank run. My other friend was a recovered AAer, and completed a 10 mile charity run. Shortly afterwards his counts started to spiral down each month until he was severely transfusion dependent again on both reds and plts even tho he was still on cyclo and GCSF. I can’t say for certain it was the running, but I do think that “excess” running is taxing, especially on a body that is trying desperately to make enough blood. I’m certainly not saying not to run, but rather be very careful to have down time, too, and don’t overdo it.

Now that I think of it, I think there was another guy who posted here recently who isn’t very old, and is also a runner. Maybe he’ll read this and reply to you.

Hope this helps,

Marla

[J.claire]

Dear Neil and Marla, I am going to get to use those questions soon! The appt with the dr at Dana-Farber is Tuesday. I looked up their stats for bmt for mds. The nurse who called me described him as a “bone marrow transplant doctor.” Two questions come to my mind: is that what the letters MPD mean after MD after his name? also, Would this mean he is more inclined to recommend transplants. Those questions you gave me will help in this regard. This forum has helped me to not feel intimidated by the medical people and their knowledge and the words they use. Thanks.

[J.claire]

It does appear that my appointment is at the transplant center. LinK: http://www.bmtinfonet.org/centers/index.cfm?FuseAction=Center&CenterID=5 does that mean this doctor will also re-evaluate and diagnose or that he will just go with the original diagnosis, in which case I am not really getting a “second opinion”. Maybe this is just the way they do it. Not sure. I think I really want another opinion.

[Jack_dup1]

Every time I have gone for another opinion (3 Centers of Excellence), they insisted on running their own tests including BMB.
Jack

[Neil]

Both Dr Esty and Dr Gore have outstanding credentials. Can’t imagine them pushing a patient toward a BMT or SCT without a compelling reason.
Push them for their feeling on the odds for success. If they are very optimistic be sure you understand why. If they are not optimistic on success you want to know about that also!!
Your age is an asset. Your hypo plastic marrow is probably the justification for the procedure.
Question? Is there any drug or procedure that would help you produce more cells than you are producing now? Conversely, will your hypo cellularity become worse over time?

[Author]

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