Just recently diagnosed with MDS

[Tim1010]

I'm presently in emotonal turmoil about my recent diagnosis of MDS. I'm 75 and I firmly believe I will need to continue, as long as my health permits, to have a circle of good friends and family. To remain active with my volunteer work and selling my eWorkbook over the internet. Any thoughts you may have concerning my attitude and the attitudes any of you have taken to deal with this health issue. Thanks for any thoughts you may have.

[kertkkey2007]

You just keep that good attitude, and keep on doing what you want to do and follow your dreams, but listen to your body when it says to rest, rest.
I'm 72 and I've had MDS for 3 + years now and take the drug Dacogen every 5th. week, I feel great most of the time.
Hang in there, Kert

[Ruth Cuadra]

Hi, Tim.

Welcome to Marrowforums. I'm glad you've found us. There are lots of people here who can understand how you're feeling because many of us, including me, have had the same experience of being diagnosed with MDS.

You sound like you do have a very active life and you certainly don't want to lose that. For me, information was the key to keeping everything in perspective. The more I learned about MDS, the better equipped I felt to participate in the plan for my treatment and to manage my expectations for how much I could do in a given day.

Have you been in touch with the Aplastic Anemia & MDS International Foundation? Be sure to get their basic information packet on MDS for a good overview. Then feel free to post about your fears and worries here. It helps to talk with people who understand what you're going through.

Regards,
Ruth Cuadra

[kgtuck]

In June 2009 I was absolutely devastated, 61 years old and never been sick or in a hospital (except for an easy delivery with my daughter)! But, once I studied the disease, talked with others with MDS, nurses, friends of friends, etc. I learned you can live a normal life; for me, with the help of drug therapy, Dacogen, 1 week on, 3 weeks off. May even be able to stretch out the time off at some point!

[jhmc]

I am a 65 years old male. Six months ago, following a bone marrrow biopsey/aspirate, I was diagnosed with MDS. I feel fine and work a full day and exercise regularily. I am not taking any drugs or treatment for this condition at this time. Is there anything I can take now that will slow the progress of this disease?
Thanks,
John

[Neil Cuadra]

John,

I'm glad you feel fine and stay active. Are your blood counts normal? If so, what symptoms led to your having a bone marrow biopsy?

Staying as healthy as possible, in all of the ways that any doctor would recommend, puts you in the best possible position should treatment eventually be needed. Patients who are strong, active, and healthy other than having MDS have the most treatment options available and the best chances to do well during treatment.

There are plenty of people who recommend particular diet choices, supplements, or alternative treatments to boost the immune system or maintain other aspects of your health, but I don't know of research showing that they can prevent or undo mutations to chromosomes or stop the mechanism of MDS within your bone marrow.

There are growth factors that enhance marrow function and chemotherapy drugs that stop or slow the progression MDS for many patients, but that's the type of treatment the doctors have apparently told you that you don't need, or at least don't need for now.

[jhmc]

Thanks for the quick response Neil,
My last CBC (Feb2011) was as follows:
Hb 10.8g/dl
RBC 3.3 x10^12l
PCV 31.2%
All the other counts are either in the normal range or very close. My blood counts have been about like this for the last year. In fact, they have improved a little from 6 months ago.
I'm not sure if my current condition requires treatment. If not, I will just keep watching and wait until I experience problems. I don't want to miss a chance to slow the progress of this.
My doctor has not recommended anything except Erythropoietin (EPO). I think this will just increase RBC and not really treat MDS. I will be seeing my doctor next week. Would decitabine or azacitidine be possible drugs that would delay progress?
Thanks,
John

[Neil Cuadra]

John,

It's good news that the "wait and watch" strategy has been working for you. You may be one of the many people who live just fine with lower than normal counts, and having stable or slightly improved counts is a good sign. Your doctor may want to do periodic bone marrow biopsies to determine if your marrow is changing at the cellular and genetic level.

You are correct that EPO is used to increase red blood cell production, not to treat the underlying cause.

Yes, decitabine or azacitidine could delay progress of the disease. Their mechanism isn't completely understood but they affect your genes and when they work its by inhibiting the reproduction of damaged cells. They're called demethylating agents. Ironically, they can have a side effect of reducing blood counts. The question your doctor will be considering is whether you are sufficiently symptom-free to avoid or delay treatment. "Wait and watch" leaves you with the risk that the MDS will worsen but without any side effects. Without a sign of progression your doctor may not think these drugs are worth the risks and possible side effects. I hope your doctor will not only make a recommendation but also discuss the tradeoffs with you.

The doctors understand the latest research a lot better than we patients and caregivers do, but a well-informed patient is going to be much more comfortable with the treatment choices made and can participate in the decision-making.

[jhmc]

Thanks again,
You are putting my mind as ease. I will ask the doctor if just having monthly CBC blood tests would be ok to be sure it is not getting worse.
Can you tell me the way decitabine and azacitidine are administered. Is a shot or a pill or something else? Also, do you have any idea of the cost of these meds. I ask because my insurance will only reimburse a percentage so I would have to pay the full amount up front.
John

[Neil Cuadra]

John,

Decitabine (brand name Dacogen) and azacitidine (brand name Vidaza) are put directly into your bloodstream by intravenous infusion or subcutaneous injection. Your doctor establishes a schedule where you are given a certain dose over a certain number of hours for a certain number of days in a row. That's called a cycle. You then get a certain number of weeks off before starting another cycle. Sometimes it takes many cycles to see results.

I don't know the costs of these drugs. Perhaps some of the patients who take them will comment on that. There are financial assistance programs you might want to look into; see our Resources page for some of them.

Most drug manufacturers run their own assistance programs. Celgene (Vidaza) has a Patient Support page. EISAI Inc. (Dacogen) has the Eisai Assistance Program.

[kgtuck]

Drug is certainly not cheap!! My cycle is 5 days (1 hr. each day) on and then 3 weeks off!
The cost of drug and adminstering the drug is approximately $2500 per day! Also, involved in this cost is blood work (CBC) and 1 visit with the doctor. I'm not sure the exact cost of the drug alone! Thank goodness for my insurance covers all except a co-pay to the doctor. But, this drug has kept me well for 22 months transfusion independent and living normal life and I'd pay all the money I have for it if I had to!

[jhmc]

Thanks for the information kgtuck.
Neil, is the cycle that kgtuck has a typical one?
What are the signs that indicate that treatment is needed? Since I feel fine, what symptons would indicate I need to get attention? Do the symptons disappear after a cycle and then reappear when another cycle is needed?
Once cycles start, does it go on for the rest of your life or does the condiition stablize after awhile? The questions just keep popping into my head. I will be traveling for a few days but will check when I get a chance.
How about Medicare? Does it cover treatment for MDS?
Thanks
John

[Neil Cuadra]

John,

Yes, kgtuck's treatment schedule is typical. Here is one of the studies that showed it's an effective schedule. (It makes you wonder how the doctors figure these things out in the first place!)

There are two ways to know that treatment is needed. The first is when you suffer from the symptoms of MDS: the effects of low blood counts or becoming transfusion dependent. The second is when you have bad results from blood and marrow tests, such as defective chromosomes, chromosomes that are changing, high counts of blast cells (immature blood cells), or very high risk of infection (neutropenia). Even if you feel OK, the tests you take are in case you come to a point where the doctors recommend that you begin treatment.

If you search these forums you'll find a number of reports from patients about their experiences while taking Dacogen, including the timing of cycles and how they responded. "Your mileage may vary."

The goal of these treatments is to prevent the worsening or transformation of MDS. In the best cases (a small percentage) it eliminates MDS. In the worst cases, patients don't get off the drug because they don't live long enough. For everyone in between, the doctors (and patients) have to make the decisions about how long to wait for a positive response or how long the improvements outweigh the risks or side effects. The MDS drugs aren't addictive. The way doctors see it, the signs of success are medical improvements, including higher blood counts and fewer infections and transfusions. The way patients see it, it's an improved quality of life however they define it.

Yes, Medicare covers all but the experimental or off-label treatments for MDS, but it's subject to all the usual complications of Medicare, like annual deductibles, and the changes from the Health Care and Education Reconciliation Act of 2010. If you get into a clinical trial, your expenses are paid for as part of the trial. You'll find some discussions about Medicare in these forums, this one for example.