Kelly, northern VA, new MDS dx

[kmiller]

I'm glad to find out about your forum. After several mos of blood tests and then a bone marrow test, my MD feels confident that I have MDS, probably RAEB 1, with a trisomy 8 chromosomal finding. As I understand it, I am neither low or high risk, but somewhere in the middle. Its mostly my WBCs that are affected now (last test 1.9) and I've been feeling tired, run down, headachy, but no probs with infections. MD has suggested I meet with Dr. Gore at Johns Hopkins to discuss treatment options. A friend in the know thought maybe I might want to check NIH clinical trials as well. Anyone know about either Hopkins or NIH work with MDS.

I am 42, so young to get this diagnosis. Depending on how fast things change, I gather I'll be facing a decision about transplant at some point. I have two siblings, neither has been tested for a match yet.

This all seems unreal to me at this point. I've always been blessed with good health - this has been a real shock. I am married with two young children, so of course I'm worried about the impact of all this on them. We haven't talked to the children yet (11 yrs, 8 yrs), thinking we'll wait until we know how we'll approach treatment (so far none). Going to get blood checked again on Tuesday and trying this week to set up an appt at Johns Hopkins.

Anyone with suggestions or thoughts for me? Thanks, Kelly

[Birgitta-A]

Hi Kelly,
Good that you don´t have any serious symptoms! Be careful when your WBC:s are 1.9 because you can get infections.

If you look at clin trials gov you will find 1098 clinical trials for MDS patients today. At John Hopkins they have 6 trials – 1 about platelet transfusion strategy, 1 with vaccination, 2 with leukemia drugs (clofarabine and ara-C) and 2 with new drugs called KW-2449 and MS-274.

As far as I understand only patients with advanced MDS can participate in the KW-2449 trial.

MS-275 is a very interesting new drug. It is an oral histone deacetylase inhibitor and is combined with GM-CSF (Sargramostim) in this study. GM-CSF is a growth factor that increases the number of cells from the bone marrow.

Histone deacetylase inhibitors like MS-275 are postulated to inactivate tumour suppressor genes leading to neoplastic transformation. Adverse reactions have been nausea, vomiting, anorexia, and fatigue but no hematological events as far as I have been able to find.

At John Hopkins they started the trial April 2007 and only 18 patients can be enrolled.

Perhaps the hematologist at John Hopkins prefers to wait with treatment – I think it is a very good strategy for many patients like myself.
Kind regards
Birgitta
68 yo, MDS dx interm-1 May 2006, transfusion dependent, desferal 4 days/month, Neupogen 2 days/week, Prednisolone 2,5 mg/day, asymptomatic

[kmiller]

Thanks for your reply, Birgitta. It sounds like you really have a good handle on various treatment options. I wanted to ask you more about the WBCs and infection risk. My hematologist claims that I will likely do just fine at this level and can carry on with usual activities, with some common sense precautions (hand washing, good self care). He did say to call, go to ER with any fever of 101 or over. While I don't want to hide in the house (and can't!), I still find myself wondering about whether and how much I should be working (home care hospice social worker) and how much time I should be spending at my kids' school. This must be a common concern! Thanks, Kelly

[Marlene]

Hi Kelly,

My husband went to Hopkins for SAA treatment with Dr. Brodsky. Hopkins is a top notch center. I have heard good things about Dr. Gore also.

We too are in No. Va. John got all his transfusions, post treatment, at INOVA Fairfax. The staff there was very good also.

Regarding your white count.....John did really well with low white count for many years. You just have to be careful. Make sure to support your digestive system with good bacteria from plain yogurt or a supplement.

I think you need to explore all your options and since you are so close to NIH, there's no harm in seeing them also.

Marlene

[Birgitta-A]

Hi Kelly
One type of WBC:s is very important when you fight infections and that is the neutrophiles. Neutrophiles are the most common type of WBC:s, comprising about 50-70% of all WBC:s. You know when your WBC:s are 1.9 your neutrophiles are probably very low – ask your hematologist about the number.

In August I had four infection starting with tonsillitis and after a few weeks my neutrophils were 0,1. I started taking Neupogen (now 2 injections/week), that stimulates my bone marrow and my WBC:s are now 6.6.

Here is one of many links to info about low neutrophiles.
http://www.nccn.org/patients/patient...a/contents.asp
Kind regards
Birgitta

[kmiller]

Thanks, everyone, for your thoughts. Kelly

[Tom C]

Hi Kelly,
I felt compelled to respond to your post. I also was recently dx with MDS in August '07 after two years of abnormal blood work and finally a bone marrow biopsy. I'm 41! I have RARS and also have two siblings that have not been tested ( or told of my condition) as possible donors. I'm still dealing with the shock & haven't had the courage to tell anyone. My wife is the only one who knows at this point. My health history was unremarkable until the abnormal blood work surfaced. I'm very healthy and an avid distance runner. I have a consult with Dr. Doug Smith at Hopkins the end of December. My Hematologist highly recommended him. I'll let you know how it goes.
All the best,
Tom

[kmiller]

Hi Tom, thanks for writing. Interesting, I used to be a distance runner as well and even though I haven't been so much of a runner in the past 15 yrs, I exercise and am in pretty good shape (or so I thought).

What is RARS (refractory anemia with ?) Are you having any symptoms at this point? I have RAEB - 1 (refractory anemia with excess blasts (approx 10%) and it looks like a have a chromosomal abnormality on chrom 8 (trisomy 8); I guess all of these details can affect your prognosis and how you approach treatment. On the positive side for both of us, we will probably be helped by relative youth and good health! For me, at this point, the biggest concern is a low WBC - which can make me more susceptible to infection. Hemoglobin, hematocrit a bit low, but nowhere near needing any transfusions.

I have an appt at Hopkins on Dec. 13 w/some colleagues of Dr. Gore. I'm getting tired of all the waiting for some kind of bottom line and recommendations! Are you near Hopkins? We live in Alexandria, VA.

Thanks again for writing and keep me posted. Kelly

[Neil Cuadra]

Originally Posted by kmiller

What is RARS (refractory anemia with ?)

RARS is refractory anemia with ringed sideroblasts. RARS is characterized by low blast (immature cell) counts, low mature red cell counts (anemia), and dark rings of iron in red cells that are unable to use the iron to produce hemoglobin.

[Tom C]

Hi Kelly,
Neil posted a great description of RARS (Thanks Neil!). My WBCs are consistently below normal (2.7 two weeks ago) and my RBCs are below normal as well. HGB has hovered around 11-12, so at this point I'm just being watched with no intervention. Fortunately, I'm about 15 minutes from Hopkins. Hope all goes well on your upcoming consult. Keep us posted.
Tom

[Tom M]

Hi Kelly - When your wbc's and neutrophils are low, you should avoid being around people that are sick. Wash your hands often, and I use a hand cream with alcohol to kill any germs that the hand washing might have missed. I wash all my fresh vegetables and fruits with a special wash that can be purchased at most grocery stores, just for that purpose.

I know one of the responses was about making sure you eat yogurt. That is so true. Make sure the yogurt has those beneficial bacteria. I find that if I go for a couple of weeks without eating yogurt, I develop a fungus on my tongue. It sounds worse than it is, but the yogurt's bacteria actually destroys the fungus.

One last thing......A friend from this site brought a product to my attention, and it is called Epicor. It is a yeast based product, and I have been taking it for 3 months. It is supposed to boost the immune system. My hematologist is aware of the product and does not see any problem with my taking this supplement. I suggest you do your own research on this product and see if it is for you. You can find some information about Epicor at: http://www.naturodoc.com/. I can only speak from my own experience, but I have been around people that were sick, and my wife had a terrible head cold, and all I got was some sniffles for one day. She is now taking the Epicor as a preventative. Pass it by your doctor. I have found the best price for this product is from Swanson Vitamins..at about $10.00/30.