Hypocellular 5q-

[Bananamoore]

My mom who has 5q- was told at her most recent bone marrow tap that she exhibits "hypocellular" marrow, much like that of someone who has AA; the doctor didn't elaborate much more, but has anyone here encountered a similar situation? Is there anything about having hypocellular marrow that would make certain treatments more/less effective?

[DanL]

Hpyo-cellular marrow simply means that the patient's marrow is a little less dense than what is expected for her age. A rule of thumb measurement is that you take the patient's age from 100 and you would get an expected cellularity - for example, I am 42 years old - it would be expected that my marrow would show up at 60% cellularity. Anything substantially less than 60% would be hypo-cellular and anything substantially more, say 75% would be hyper-cellular. Patients with aplastic anemia are classified as AA, severe AA, or very severe AA. In order to have a diagnosis of AA, the patient would have to have very few dysplastic or misshapen cells, and they could not have any cytogenetic anomalies, like the 5q deletion.

Because of the similarity to AA, although the research is not definitive, some research suggests that hypo-cellular MDS is a little more responsive to certain kinds of treatment, including immune suppression as with Campath or ATG.

The 5q deletion component tends to respond to Revlimid, and is normally treated with either Revlimid or one of the EPO agents if EPO levels are low.

I don't remember seeing anything that goes into detail about the division between hypo, normo, or hyper-cellular marrow in any of the studies as they pertain to the use and effectiveness of Revlimid. Overall, hypo-cellular patients with only 5q deletions are believed to do better, but as with all things MDS, it is very hard to predict how any individual will respond.

I hope this gives you a little bit of information to discuss with the doctor.

[Bananamoore]

Dan, thank you for the reply! Yes, that does give us things to ask the doc next time. You're right about the Revlimid being mostly effective on 5q-, but mom also has the p53 mutation, which her doc said does not do as well on that med. He was not pushing at it first, then kind of changed his mind and says we may as well try it. So we're thinking about maybe starting off at 5mg and see how that goes, keeping the immunosuppressants in mind.
Mom also has a *really* hard time with bone marrow taps, it's just beyond painful and the numbing meds have almost no effect on her. The last person who did it literally broke into a sweat after chiseling, she said after that mom's bones are unusually hard for someone her age (62). I wonder if that is at all tied in with the hypocellular element? Or the two are just separate?

[bailie]

Anna, you might soon learn that these drugs such as Revlimid sometimes work when there seems no particular reason. With these diseases the approach is sometimes like "throwing paint on a wall and hoping something sticks". There is just that much uncertainty about these drugs and the different way different people react. I have had three months of Revlimid with zero side effects along with Vidaza. Not sure if it helped more than the Vidaza alone, but it was worth the try.

As far as the bone marrow biopsies, I will be getting my 18th BMB next week. I haven't had many problems but I know they can get a person's attention. She should make it known that she would like more powerful meds to ease the pain. They have also commented to me that I have "really hard bones" and I take that as a positive.

[Margaret W]

FWIW, I've always had BMBs in which my bone marrow cellularity is around 2-5%. The last one, in January of this year, was 5% and it was the highest I've ever had. Various hematologists have explained this to me accompanied by a theme of, "Well, you're making blood cells somewhere. You're here. We just can't find where you're making these cells." I've been having these BMB cellularity results for almost 44 years now. By now, I just say to myself, "What - me worry?"

Margaret

[DanL]

Regarding the bone marrow biopsies, it is pretty common with hypo-cellular marrow and with fibrosis that you get dry taps, which tend to be a little more painful. Also, if your mother's doctor is not using a drill, then you might ask about the drill. The other possibility - sedation. I have been given my last 16 biopsies with the drill - I burned one out with the hard bones issue - but the pain is over with much more quickly, and the samples are better generally. Recovery time seems to be quicker as well.