Dad may have MDS - new member

[Kidgee]

We are waiting to find out if my Dad has MDS secondary to chemotherapy. His oncologist sent a bone marrow test in for chromosome testing and we were told today that the test was inconclusive as the white blood cells failed to grow. I am wondering what this may mean? In the meantime, my Dad is taking Aranesp and Prednisone and is having his blood checked every two weeks. He had his first blood transfusion a couple of weeks ago and feels much better. We remain, however, very worried and scared.

[Dick S]

Originally Posted by Kidgee

We are waiting to find out if my Dad has MDS secondary to chemotherapy. His oncologist sent a bone marrow test in for chromosome testing and we were told today that the test was inconclusive as the white blood cells failed to grow. I am wondering what this may mean? In the meantime, my Dad is taking Aranesp and Prednisone and is having his blood checked every two weeks. He had his first blood transfusion a couple of weeks ago and feels much better. We remain, however, very worried and scared.

I'm sorta new and I don't know how to interpret "white blood cells failed to grow", but keep us posted and we will include you our prayers for your Dad.

[Kidgee]

I guess "white blood cells failed to grow" was rather cryptic! I guess they have to culture the white blood cell line before they can determine whether or not there are any chromosome abnormalities. They were able to "grow" (or culture?) the lymphocytes, but not the white blood cells. The doctor told me that he took this as a good sign that the white blood cells were not growing fast. I don't really understand why that would be a good sign...In any case, we are still in a "wait and see" mode. My Dad will receive blood tests every two weeks to see how his counts are doing. I am worried that we should be doing something else! Does anyone know if MDS can be diagnosed even if there are no chromosome abnormalities?

[LynnI]

Kidgee;
For what it is worth, I have been dx with Myelodysplastic Syndrome/Myeloproliferative Disorder-Unclassified and I have no Chromesome changes at this point.

[Kidgee]

Thanks, LynnI, for sharing. Is it suspected that your MDS was secondary to chemotherapy? I read somewhere that MDS secondary to chemo has a 75%-85% change of chromosome abnormalities.

[Marlene]

I don't know about culturing the cells and what that all means but Lymphocytes are white blood cells. There different types of white blood cells and lymphs are one type. The other types are granulocytes (aka neutrophils), monocytes, basophils and eosinophils. All of these make up the WBC in CBC.

Only the lymph can reproduce themselves. They are made in the bone marrow from stem cell but they can also divide to make more of themselves once they have left the BM. The other white cells come from stem cells also but they do not have the ability to reproduce. This is also true for platelets and red cells.

[Kidgee]

Thank you, Marlene. Very informative re: white blood cells. I actually noticed that lymphocytes were white blood cells in a recent internet search (after posting my below message). Do you know which white blood cells contain the chromosomes that might be abnormal in a person with MDS? I have tried to figure that out via internet searches, but haven't found it so far. Thank you!

[Marlene]

All I can do is guess. There are others here much more knowledgeable on MDS. I'm sure they'll post if they know. In the meantime, here's a pretty thorough link on MDS and a second one explaining the different components of blood. You'll see the wbc go down different paths when the stem cells differentiate. One is the lymph path and the other myloid.

http://users.rcn.com/jkimball.ma.ult...s/B/Blood.html

http://www.emedicine.com/med/topic2695.htm

Hope this helps

[Kidgee]

Many thanks! I really appreciate your help and the web sites. There is a lot of data to wade through.

[LynnI]

Kidgee:
I have never had chemo before, mine is Primary instead of Secondary.

Lynn

[Kidgee]

Thanks, Lynn1, for that piece of data. My Dad has had chemo several times. Once in 1995 for low-grade non-hodgkins lymphoma and again in 2007 for a recurrence (as well as radiation this year). If he does have MDS, I think it will be a result of one of those chemotherapies or radiation. He's 67 years old.

My best wishes to you, Marlene, Dick, and everyone else on this web site! This is a wonderful site and I am so thankful for it.

Melissa

[Harold P]

Hi,
My husband was diagnosed 2/08 with MDS RARS-INT1, secondary due to prior chemo from Non Hodgkins Lmphoma. He has several abnormal chromosome damage including monosomy 7. He has been doing quite well so far. He had 1 treatment of Vidaza in 4/08 for 7 days, & then decided not to continue with Vidaza because one of his oncologist/hematologist thought a wait & watch approach was warranted because his counts were pretty good & he feels good. After getting opinions from 2 oncologist/hematologists, 1 Dr who specializes in MDS, & 2 transplant doctors my husband decided to wait & watch for now. He said he could always start the Vidaza treatments later on if needed. He is not a good candidate for a stem cell transplant or umbilicord transplant due to other health issues. The transplant doctors told my husband that he would have a 20 - 40% chance of making it through a transplant. So he has ruled that out for now, but did allow them to take blood in case he changes his mind at a later date. No 2 people who have MDS have exactly the same symptoms or treatment. There are a lot of factors that weigh into the treatment that each doctor recommends. There are several web sites to research so you get more knowledgeable about this horrific disease; so you can make decisions on what is the best treatment option to follow. The more informed you are the more questions you can ask the doctors. Please keep me posted as to what you guys find out. We may have a lot in common as you find out more.

Sincerely,
Pete & Sandy Peterson

[Kidgee]

Thank you, Sandy, for your message. My Dad's oncologist phoned yesterday and told us that Dad definitely has MDS. I am not sure how he suddenly made that determination. Dad got a blood test yesterday and the numbers were not improved. Now, we need to figure out what to do: should we get a second opinion from a doctor that specializes in MDS, do we need to get a definitive diagnosis regarding the exact type of MDS? My feeling is that we need to do both, but my Dad's oncologist wants him to just keep taking Aranesp every three weeks. I am going to post a new thread asking for advice.

Thanks again, and my best to you and Pete.

[Harold P]

Hi,
I would definitely get a second & even a 3rd opinion until you find a doctor that you & your dad feel confident & comfortable with. They need to get the right kind of tests done & sit you guys down & explain exactly what the results show & the course of treatment they would recommend. Please don't stop with one doctor's opinion. I would go to an MDS center of excellence & see a doctor who has seen several MDS patients. Go online & have the MDS & Leukemia & Lymphoma Foundation send you some lnformation so you know what kind of questions to ask the doctors. I will send you some links later. Good Luck.

Sincerely,
Sandy & Pete Peterson

[Kidgee]

Thanks, Sandy. We met with my Dad's oncologist yesterday and he recommended a hematologist at USC. We'll probably start there. He gave us some more information as well: Dad has (FAB)-RA with .8% blasts, which I think is good news (if one has to have MDS at all). We still do not know if he has any chromosome abnormalities, but will probably find out when he gets his marrow re-tested sometime in the future. For now, he is still taking Aranesp (he got another shot yesterday), and we're still hoping he'll have a good response (I know that there is a good chance that he won't).

[Harold P]

Hi,
I still think the Center of Excellence will be able to verify what type of MDS your dad has & if he has chromosome damage. Anyone who has had prior chemo or radiation is automatically considered to have secondary MDS. They will usually find lots of chromosome damage because of the chemo & radiation. The Center of Excellence will do a BMB & from that the doctor will get a diagnosis from the Bone Marrow Aspirate, Core Biopsy, Clot Section & Peripheral Blood. This report will give the doctor information on your dad's peripheral blood & bone marrow. The doctor will also do a chromosome Analysis for Hematologic Disorders, Bone Marrow. That test will show if your dad has abnormal chromosomes & which chromosomes are abnormal. These tests are what they did on my husband & how they determined that he had MDS secondary. The test determined that he had both de novo & therapy-related myeloid malignancies. Secondary is harder to treat because of the abnormal chromosome damage & is considered high risk, which has a high probability it will evolve into AML. Please make sure you have a list of questions to ask the doctor. If you aren't sure of what to ask you can look at the links I have included below:

Leukemia & Lymphoma Society:
Home Page: http://www.lls.org/hm_lls
You can navigate this site to blood cancers, MDS, etc.
LLS education series on MDS: http://www.leukemia-lymphoma.org/all_page?item_id=74405 this site should list the MDS phone conference

MDS Foundation:
This site has lots of information & will send you excellent brochures, etc.
Home Page: http://www.mds-foundation.org/

AA/MDS Foundation:
This is another excellent site. Also can provide lots of information to you.
Home page: http://www.aamds.org/aplastic/

Please keep me posted on what your dad finds out. I'm pretty sure that your dad & my husband's diagnosis will be similar because of prior chemo treatments for Non Hodgkins's Lymphoma.

Sincerely,
Sandy Peterson

[Kidgee]

Thanks, Sandy. How is your husband doing? I hope he is still feeling good as you earlier indicated. Are you still pursuing a "watch and wait" approach? It's really "unfair" to go through the pain of NHL and then have to face yet another complicated condition like MDS. When was Pete diagnosed with NHL? My Dad was first diagnosed in 1995 when he was 54 and went into a long remission (from 1996 to 2007). He had a recurrence last June and has been fighting that with chemo and radiation ever since. I think the NHL is in control (for now). Fortunately, my Dad (now 67) has a really positive outlook on life and does a good job of living life to its fullest. I think that helps him a lot.

In response to you last post, we do have a pathology report of my Dad's bone marrow that concludes that he has FAB-RA with few blasts (.8%) and no ringed sideroblasts. It's quite detailed (I have a copy of it, but a lot of it is hard to understand). His marrow was also sent at the same time for a Cytogenetic Analysis Report (to determine chromosome damage), but the report states: "the volume of specimen received was inadequate for our testing purposes..." So, as of now, we don't know about the chromosome abnormalities. I suspect that when we see the USC hematologist, she will do another bone marrow test and will receive new pathology and cytogenetic reports so we'll know more. But, for now, it looks like he does not have the exact same sub-type that your husband has (RARS), and we don't yet know about chromosome abnormalities. I would not be surprised if, as you say, he has some chromo-abnormalities. His doctor confirmed for us that his MDS is considered "high risk." (I asked him that specific question because I had read that "RA" MDS is one of the lower risk types to have, but according to the book "100 Questions and Answers about MDS," which I have found to be very informative, the FAB and WHO classification systems are really not valid for secondary MDS.)

The good news is that he had a transfusion on 6/25 and he still feels great today. Also, after two shots of Aranesp (he's due for another one next week), his platelets have come up from 29 to 42 and his hemoglobin has risen slightly. His WBC and RBC are generally just hanging in there. I am not sure if the Aranesp is responsible or not. Anyway, I'll keep you posted once we've seen the USC hematologist, hopefully week after next.

[Steve Kessler]

One of the premier MDS docs is Ron Paquette at UCLA. E-mail paquette@ucla.edu. You might onsider him for a second opinion. By the way, what your dad's doc has done so far sounds entirely reasonable, he sounds knowledgable and aranesp is a good starting med for a condition that seems to have not progressed far. Stay hopeful. With new meds, many MDS patients live far longer than the old statistics (pre- effective drug days) predicted.

[Harold P]

My husband Pete, was diagnosed with NHL in 7/98. Pete found a marble size lump on one of his testicles when he was showering. He was lucky he found it early, & had surgery to get it removed then he had 6 months of CHOP chemo. He has been in remissin ever since. Thank God!

You are correct about the FAB & WHO MDS subtypes. It is for Di Novo patients & not for secondary MDS. That's why they consider secondary high risk. They know it was caused from chemo, radiation or benzene because of the abnormal chromosome damage. I'm sure the new Dr. will do another BMB & a chromosome analysis.

Pete is still doing very good. He just had a CBC & his counts were very good. He is still doing the watch & wait.

I hope your dad likes the new Dr. & can get more definite answers. Please keep me updated. Best of luck to you, your dad, & your family. I will keep all of you in my thoughts & prayers.

Sincerely,
Sandy Peterson